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Notice cheap zithromax canada zithromax 500mg price. This notice announces the request for nominations for membership on the Medicare Evidence Development &. Coverage Advisory Committee (MEDCAC).

Among other duties, the MEDCAC provides advice and zithromax 500mg price guidance to the Secretary of the Department of Health and Human Services (the Secretary) and the Administrator of the Centers for Medicare &. Medicaid Services (CMS) concerning the adequacy of scientific evidence available to CMS in making coverage determinations under the Medicare program. The MEDCAC's fundamental purpose is to support the principles of an evidence-based determination process for Medicare's coverage policies.

MEDCAC panels provide advice to CMS on the strength of the evidence available zithromax 500mg price for specific medical treatments and technologies through a public, participatory, and accountable process. Nominations must be received by Monday, March 28, 2022. You may mail nominations for membership to the following address.

Centers for Medicare & zithromax 500mg price. Medicaid Services, Center for Clinical Standards and Quality, Attention. Ruth McKesson, 7500 Security Boulevard, Mail Stop.

S3-02-01, Baltimore, MD 21244 or send via zithromax 500mg price email to MEDCACnomination@cms.hhs.gov. Start Further Info Ruth McKesson, MEDCAC Coordinator, Centers for Medicare &. Medicaid Services, Center for Clinical Standards and Quality, Coverage and Analysis Group, S3-02-01, 7500 Security Boulevard, Baltimore, MD 21244 or contact Ms.

McKesson by phone (410) 786-8611 or via email zithromax 500mg price at Ruth.McKesson@cms.hhs.gov. End Further Info End Preamble Start Supplemental Information I. Background The Secretary signed the initial charter for the Medicare Coverage Advisory Committee (MCAC) on November 24, 1998.

A notice in the Federal Register (63 FR 68780) announcing establishment of the MCAC was published on December zithromax 500mg price 14, 1998. The MCAC name was updated to more accurately reflect the purpose of the committee and on January 26, 2007, the Secretary published a notice in the Federal Register (72 FR 3853), announcing that the Committee's name changed to the Medicare Evidence Development &. Coverage Advisory Committee (MEDCAC).

The current zithromax 500mg price Secretary's Charter for the MEDCAC is available on the CMS website at. Https://www.cms.gov/âRegulations-and-Guidance/âGuidance/âFACA/âDownloads/âmedcaccharter.pdf or you may obtain a copy of the charter by submitting a request to the contact listed in the FOR FURTHER INFORMATION section of this notice. The MEDCAC is governed by provisions of the Federal Advisory Committee Act, Public Law 92-463, as amended (5 U.S.C.

App. 2), which sets forth standards for the formulation and use of advisory committees, and is authorized by section 222 of the Public Health Service Act as amended (42 U.S.C. 217A).

We are requesting nominations for candidates to serve on the MEDCAC. Nominees are selected based upon their individual qualifications and not solely as representatives of professional associations or societies. We wish to Start Printed Page 11449 ensure adequate representation of those enrolled in the Medicare program including but not limited to, racial and ethnic groups, individuals with disabilities, and from across the gender spectrum.

Therefore, we encourage nominations of qualified candidates who can represent these lived experiences. The MEDCAC consists of a pool of 100 appointed members including. 90 at-large standing members (10 of whom are patient advocates), and 10 representatives of industry interests.

Members generally are recognized authorities in clinical medicine including subspecialties, administrative medicine, public health, biological and physical sciences, epidemiology and biostatistics, clinical trial design, health care data management and analysis, patient advocacy, health care economics, health disparities, medical ethics, those with an understanding of sociodemographic bias and resulting limitations of scientific evidence, or other relevant professions. The MEDCAC works from an agenda provided by the Designated Federal Official. The MEDCAC reviews and evaluates medical literature and technology assessments, and hears public testimony on the evidence available to address the impact of medical items and services on health outcomes of Medicare beneficiaries.

The MEDCAC may also advise the Centers for Medicare &. Medicaid Services (CMS) as part of Medicare's âcoverage with evidence developmentâ initiative. II.

Provisions of the Notice As of June 2022, there will be 23 membership terms expiring. Of the 23 memberships expiring, 3 are patient advocates and the remaining 20 membership openings are for the at-large standing MEDCAC membership. All nominations must be accompanied by curricula vitae.

Nomination packages should be sent to Ruth McKesson at the address listed in the ADDRESSES section of this notice. Nominees are selected based upon their individual qualifications. Nominees for membership must have expertise and experience in one or more of the following fields.

Clinical medicine including subspecialties Administrative medicine Public health Health disparities Biological and physical sciences Epidemiology and biostatistics Clinical trial design Health care data management and analysis Patient advocacy Health care economics Medical ethics Other relevant professions We are looking particularly for experts in a number of fields. These include health disparities, cancer screening, genetic testing, clinical epidemiology, psychopharmacology, screening and diagnostic testing analysis, and vascular surgery. We also need experts in biostatistics in clinical settings, dementia treatment, observational research design, stroke epidemiology, and women's health.

The nomination letter must include a statement that the nominee is willing to serve as a member of the MEDCAC and appears to have no conflict of interest that would preclude membership. We are requesting that all curricula vitae include the following. Title and current position Professional affiliation Home and business address Telephone Email address List of areas of expertise In the nomination letter, we are requesting that nominees specify whether they are applying for a patient advocate position, for an at-large standing position, or as an industry representative.

Potential candidates will be asked to provide detailed information concerning such matters as financial holdings, consultancies, and research grants or contracts in order to permit evaluation of possible sources of financial conflict of interest. Department policy prohibits multiple committee memberships. A federal advisory committee member may not serve on more than one committee within an agency at the same time.

Members may be invited to serve for overlapping 2-year terms. A member may continue to serve after the expiration of the member's term until a successor is named. Any interested person may nominate one or more qualified persons.

Self-nominations are also accepted. Individuals interested in the representative positions are encouraged to include a letter of support from the organization or interest group they would represent. III.

Collection of Information This document does not impose information collection requirements, that is, reporting, recordkeeping or third-party disclosure requirements. Consequently, there is no need for review by the Office of Management and Budget under the authority of the Paperwork Reduction Act of 1995 (44 U.S.C. 3501 et seq.

). The Chief Medical Officer and Director of the Center for Clinical Standards and Quality for the Centers for Medicare &. Medicaid Services (CMS), Lee A.

Fleisher, having reviewed and approved this document, authorizes Evell J. Barco Holland, who is the Federal Register Liaison, to electronically sign this document for purposes of publication in the Federal Register. Start Signature Evell J.

Barco Holland, Federal Register Liaison, Centers for Medicare &. Medicaid Services. End Signature End Supplemental Information.

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65, Does not have Medicare)(OR has Medicare and buy zithromax online uk has http://www.em-achenheim.ac-strasbourg.fr/bienvenue/ dependent child <. 18 or <. 19 in school) 138% FPL*** Children <. 5 and pregnant women have HIGHER LIMITS than shown ESSENTIAL PLAN (2022) For MAGI-eligible people over buy zithromax online uk MAGI income limit up to 200% FPL No long term care.

See info here 1 2 1 2 3 1 2 Income $934 (up from $884 in 2021) add $20 for standard deduction $1367 (up from $1,300 in 2021) add $20 for standard deduction $1,563 $2,106 $2,649 $2,266 $3,052 Resources $16,800 (up from $15,900 in 2021) $24,600 (up from $23,400 in 2020) NO LIMIT** NO LIMIT Source for all levels based on the Federal Poverty Line (FPL)- GIS 22 MA/01 Attachment I. Source for non-MAGI levels that are not based on the FPL. GIS 21 MA/25 Attachment I buy zithromax online uk (only for non-MAGI limits for Aged, Blind &. Disabled - non-MAGI) GIS 21 MA/25 Attachment II - only for non-MAGI levels (this is now partly replaced by the 2022 GIS) GIS 21 MA/25 Attachment V (PDF) PICKLE reduction factors - see more about Pickle here buy antibiotics NOTE - Because of the ongoing Public Health Emergency, current Medicaid recipients will have eligibility continued under their current budgets.

Though income for many increased in 2022 with the 5.9% COLA for Social Security, their spend-down will not be increased at this time. However, when the Public Health Emergency is declared over, probably in 2022, the next renewals will redetermine their elgbibility using 2022 income and limits buy zithromax online uk. See this article for tips on renewals. Note that the 2022 increase in the Medicare Part B premium (($170.10/mo increased from $148.50 in 2021 ) will offset some of the increased Social Security income.

But for buy zithromax online uk new applications filed or approved in 2022, the 2022 limits will be used for non-MAGI. NEED TO KNOW PAST MEDICAID INCOME AND RESOURCE LEVELS?. WHAT IS THE HOUSEHOLD SIZE?. See rules here buy zithromax online uk.

HOW TO READ THE HRA Medicaid Levels chart - Boxes 1 and 2 are NON-MAGI Income and Resource levels -- Age 65+, Blind or Disabled and other adults who need to use "spend-down" because they are over the MAGI income levels. Box 11 are the MAGI income levels -- The Affordable Care Act changed the rules for Medicaid income eligibility for many BUT NOT ALL New Yorkers. People in the "MAGI" category - those NOT on Medicare -- have expanded eligibility up to 138% of the Federal Poverty Line, so may now qualify for Medicaid even if they were not eligible before, or may now be eligible for Medicaid without a "spend-down." They have NO resource limit. Box 3 on page 1 is Spousal Impoverishment levels for Managed Long Term Care &.

Nursing Homes and Box 9 on page 5 has the Transfer Penalty rates for nursing home eligibility Box 5 has Medicaid Buy-In for Working People with Disabilities Under Age 65 Box 6 - Family Planning Benefit Program Box 7 are Medicare Savings Program levels Box 8 - annual Medicare figures Box 9 are monthly regional Nursing Home rates, used to calculate the transfer penalty for nursing home care. If and when the lookback begins for home care and Assisted Living Program, the same rates will be used for the transfer penalty. See this article Box 10 - Fair Market Regional Rates for Special Standard for Housing Expenses - an extra income disregard for people enrolled in MLTC when they return home after 30+ days in a nursing home or adult home. See this article.

Box 11 are the MAGI income levels -- for those under 65 NOT on Medicare (with some exceptions) -- have expanded eligibility up to 138% of the Federal Poverty Line. They have NO resource limit.B Box 12 - MAGI limits for children under 18 and pregnant women Box 13 - Child Health Plus limits for children under age 19 who are not Mediacid-eligible Box 14 - Disabled Adult Child (DAC) income limits Box 15 - Congregate Care Levels I, II, and III - these are the income limits used in the Assisted Living Program and in Adult Homes (adult care facilities) and other congregate facilties. These levels are published by the NYS Office of Temporary &. Disability Assistance (OTDA) each year - most recently at 2022 Levels 21-INF-09 Attachment 1 - 2022 SSI and SSP Maximum Monthly Benefit Levels Chart.

(IF this isn't updated, look at OTDA Policy Directives for recent INF directives. Prior years in ARCHIVES link. MAGI INCOME LEVEL of 138% FPL applies to most adults who are not disabled and who do not have Medicare, AND MAGI can also apply to adults with Medicare if they have a dependent child/relative under age 18 or under 19 if in school. 42 C.F.R.

Â§ 435.4. Certain populations have an even higher income limit - 224% FPL for pregnant women and babies <. Age 1, 154% FPL for children age 1 - 19. CAUTION.

What is counted as income may not be what you think. For the NON-MAGI Disabled/Aged 65+/Blind, income will still be determined by the same rules as before, explained in this outline and these charts on income disregards. However, for the MAGI population - which is virtually everyone under age 65 who is not on Medicare - their income will now be determined under new rules, based on federal income tax concepts - called "Modifed Adjusted Gross Income" (MAGI). There are good changes and bad changes.

GOOD. Veteran's benefits, Workers compensation, and gifts from family or others no longer count as income. BAD. There is no more "spousal" or parental refusal for this population (but there still is for the Disabled/Aged/Blind.) and some other rules.

For all of the rules see. ALSO SEE 2018 Manual on Lump Sums and Impact on Public Benefits - with resource rules HOW TO DETERMINE SIZE OF HOUSEHOLD TO IDENTIFY WHICH INCOME LIMIT APPLIES The income limits increase with the "household size." In other words, the income limit for a family of 5 may be higher than the income limit for a single person. HOWEVER, Medicaid rules about how to calculate the household size are not intuitive or even logical. There are different rules depending on the "category" of the person seeking Medicaid.

Here are the 2 basic categories and the rules for calculating their household size. People who are Disabled, Aged 65+ or Blind - "DAB" or "SSI-Related" Category -- NON-MAGI - See this chart for their household size. These same rules apply to the Medicare Savings Program, with some exceptions explained in this article. Everyone else -- MAGI - All children and adults under age 65, including people with disabilities who are not yet on Medicare -- this is the new "MAGI" population.

Their household size will be determined using federal income tax rules, which are very complicated. New rule is explained in State's directive 13 ADM-03 - Medicaid Eligibility Changes under the Affordable Care Act (ACA) of 2010 (PDF) pp. 8-10 of the PDF, This PowerPoint by NYLAG on MAGI Budgeting attempts to explain the new MAGI budgeting, including how to determine the Household Size. See slides 28-49.

Also seeLegal Aid Society and Empire Justice Center materials OLD RULE used until end of 2013 -- Count the person(s) applying for Medicaid who live together, plus any of their legally responsible relatives who do not receive SNA, ADC, or SSI and reside with an applicant/recipient. Spouses or legally responsible for one another, and parents are legally responsible for their children under age 21 (though if the child is disabled, use the rule in the 1st "DAB" category. Under this rule, a child may be excluded from the household if that child's income causes other family members to lose Medicaid eligibility. See 18 NYCRR 360-4.2, MRG p.

573, NYS GIS 2000 MA-007 CAUTION. Different people in the same household may be in different "categories" and hence have different household sizes AND Medicaid income and resource limits. If a man is age 67 and has Medicare and his wife is age 62 and not disabled or blind, the husband's household size for Medicaid is determined under Category 1/ Non-MAGI above and his wife's is under Category 2/MAGI. The following programs were available prior to 2014, but are now discontinued because they are folded into MAGI Medicaid.

Prenatal Care Assistance Program (PCAP) was Medicaid for pregnant women and children under age 19, with higher income limits for pregnant woman and infants under one year (200% FPL for pregnant women receiving perinatal coverage only not full Medicaid) than for children ages 1-18 (133% FPL). Medicaid for adults between ages 21-65 who are not disabled and without children under 21 in the household. It was sometimes known as "S/CC" category for Singles and Childless Couples. This category had lower income limits than DAB/ADC-related, but had no asset limits.

It did not allow "spend down" of excess income. This category has now been subsumed under the new MAGI adult group whose limit is now raised to 138% FPL. Family Health Plus - this was an expansion of Medicaid to families with income up to 150% FPL and for childless adults up to 100% FPL.

Whether to use the income level for 1, 2 or more persons zithromax 500mg price Click Here is not intuitive. See rules on household size here. Non-MAGI - 2022 Disabled, 65+ or Blind ("DAB" or SSI-Related) and have Medicare MAGI (2022) (<.

65, Does not zithromax 500mg price have Medicare)(OR has Medicare and has dependent child <. 18 or <. 19 in school) 138% FPL*** Children <.

5 and zithromax 500mg price pregnant women have HIGHER LIMITS than shown ESSENTIAL PLAN (2022) For MAGI-eligible people over MAGI income limit up to 200% FPL No long term care. See info here 1 2 1 2 3 1 2 Income $934 (up from $884 in 2021) add $20 for standard deduction $1367 (up from $1,300 in 2021) add $20 for standard deduction $1,563 $2,106 $2,649 $2,266 $3,052 Resources $16,800 (up from $15,900 in 2021) $24,600 (up from $23,400 in 2020) NO LIMIT** NO LIMIT Source for all levels based on the Federal Poverty Line (FPL)- GIS 22 MA/01 Attachment I. Source for non-MAGI levels that are not based on the FPL.

GIS 21 MA/25 Attachment I (only zithromax 500mg price for non-MAGI limits for Aged, Blind &. Disabled - non-MAGI) GIS 21 MA/25 Attachment II - only for non-MAGI levels (this is now partly replaced by the 2022 GIS) GIS 21 MA/25 Attachment V (PDF) PICKLE reduction factors - see more about Pickle here buy antibiotics NOTE - Because of the ongoing Public Health Emergency, current Medicaid recipients will have eligibility continued under their current budgets. Though income for many increased in 2022 with the 5.9% COLA for Social Security, their spend-down will not be increased at this time.

However, when the Public Health Emergency is declared over, probably in 2022, the next renewals will redetermine their elgbibility using zithromax 500mg price 2022 income and limits. See this article for tips on renewals. Note that the 2022 increase in the Medicare Part B premium (($170.10/mo increased from $148.50 in 2021 ) will offset some of the increased Social Security income.

But for new applications filed or approved in 2022, the 2022 limits will be used for zithromax 500mg price non-MAGI. NEED TO KNOW PAST MEDICAID INCOME AND RESOURCE LEVELS?. WHAT IS THE HOUSEHOLD SIZE?.

See rules here zithromax 500mg price. They are not intuitive!. !.

!. !. HOW TO READ THE HRA Medicaid Levels chart - Boxes 1 and 2 are NON-MAGI Income and Resource levels -- Age 65+, Blind or Disabled and other adults who need to use "spend-down" because they are over the MAGI income levels.

Box 11 are the MAGI income levels -- The Affordable Care Act changed the rules for Medicaid income eligibility for many BUT NOT ALL New Yorkers. People in the "MAGI" category - those NOT on Medicare -- have expanded eligibility up to 138% of the Federal Poverty Line, so may now qualify for Medicaid even if they were not eligible before, or may now be eligible for Medicaid without a "spend-down." They have NO resource limit. Box 3 on page 1 is Spousal Impoverishment levels for Managed Long Term Care &.

See this article. Box 11 are the MAGI income levels -- for those under 65 NOT on Medicare (with some exceptions) -- have expanded eligibility up to 138% of the Federal Poverty Line. They have NO resource limit.B Box 12 - MAGI limits for children under 18 and pregnant women Box 13 - Child Health Plus limits for children under age 19 who are not Mediacid-eligible Box 14 - Disabled Adult Child (DAC) income limits Box 15 - Congregate Care Levels I, II, and III - these are the income limits used in the Assisted Living Program and in Adult Homes (adult care facilities) and other congregate facilties.

These levels are published by the NYS Office of Temporary &. Disability Assistance (OTDA) each year - most recently at 2022 Levels 21-INF-09 Attachment 1 - 2022 SSI and SSP Maximum Monthly Benefit Levels Chart. (IF this isn't updated, look at OTDA Policy Directives for recent INF directives.

Prior years in ARCHIVES link. MAGI INCOME LEVEL of 138% FPL applies to most adults who are not disabled and who do not have Medicare, AND MAGI can also apply websites to adults with Medicare if they have a dependent child/relative under age 18 or under 19 if in school. 42 C.F.R.

Â§ 435.4. Certain populations have an even higher income limit - 224% FPL for pregnant women and babies <. Age 1, 154% FPL for children age 1 - 19.

CAUTION. What is counted as income may not be what you think. For the NON-MAGI Disabled/Aged 65+/Blind, income will still be determined by the same rules as before, explained in this outline and these charts on income disregards.

However, for the MAGI population - which is virtually everyone under age 65 who is not on Medicare - their income will now be determined under new rules, based on federal income tax concepts - called "Modifed Adjusted Gross Income" (MAGI). There are good changes and bad changes. GOOD.

Veteran's benefits, Workers compensation, and gifts from family or others no longer count as income. BAD. There is no more "spousal" or parental refusal for this population (but there still is for the Disabled/Aged/Blind.) and some other rules.

There are different rules depending on the "category" of the person seeking Medicaid. Here are the 2 basic categories and the rules for calculating their household size. People who are Disabled, Aged 65+ or Blind - "DAB" or "SSI-Related" Category -- NON-MAGI - See this chart for their household size.

These same rules apply to the Medicare Savings Program, with some exceptions explained in this article. Everyone else -- MAGI - All children and adults under age 65, including people with disabilities who are not yet on Medicare -- this is the new "MAGI" population. Their household size will be determined using federal income tax rules, which are very complicated.

New rule is explained in State's directive 13 ADM-03 - Medicaid Eligibility Changes under the Affordable Care Act (ACA) of 2010 (PDF) pp. 8-10 of the PDF, This PowerPoint by NYLAG on MAGI Budgeting attempts to explain the new MAGI budgeting, including how to determine the Household Size. See slides 28-49.

See 18 NYCRR 360-4.2, MRG p. 573, NYS GIS 2000 MA-007 CAUTION. Different people in the same household may be in different "categories" and hence have different household sizes AND Medicaid income and resource limits.

If a man is age 67 and has Medicare and his wife is age 62 and not disabled or blind, the husband's household size for Medicaid is determined under Category 1/ Non-MAGI above and his wife's is under Category 2/MAGI. The following programs were available prior to 2014, but are now discontinued because they are folded into MAGI Medicaid. Prenatal Care Assistance Program (PCAP) was Medicaid for pregnant women and children under age 19, with higher income limits for pregnant woman and infants under one year (200% FPL for pregnant women receiving perinatal coverage only not full Medicaid) than for children ages 1-18 (133% FPL).

Medicaid for adults between ages 21-65 who are not disabled and without children under 21 in the household. It was sometimes known as "S/CC" category for Singles and Childless Couples. This category had lower income limits than DAB/ADC-related, but had no asset limits.

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IntroductionThe WHO, the International Council of Nurses and zithromax 500mg for sale Nursing Now, had planned to raise the can i get zithromax over the counter global public profile of nursing in 2020 as a consequence of Florence Nightingales 200th anniversary. However, with the unexpected arrival of the antibiotics zithromax in late 2019, nurses and the nursing profession found themselves having unexpected media attention can i get zithromax over the counter. The degree and type of media attention that nursing achieved during this time were never anticipated.

This article considers the reality of nursing, both the role and profession in the UK in 2021 compared with the public perception and temporal media portrayal.Stereotypes of nursingThe media mediates public perception(s) through imagery and can i get zithromax over the counter messaging. However, with reduced public understanding of healthcare services, inadequate understanding of healthcare professional roles and responsibilities, and reduced health literacy in the general population,1 there is ample opportunity for misinformation and psychological bias (such as confirmation bias or stereotyping) to operate in the mainstream discourse dictating and perpetuating a false image of nursing.2 Given that nursing is the largest global occupation of predominately female employees3 and the National Health Service (NHS) is the largest employer in Europe, qualified nurses in the UK make up 26% of the total NHS workforce.4 The consequences of nursing having a poor public image subsequently impact the profession being undervalued, with poor recruitment, retention and indirectly influence patient healthcare.4Since the 1970s, nursing had forwarded Advanced Clinical Practice and specialist roles.5 Conversely, for decades, the media has portrayed nurses as predominantly subservient to doctors and referred to nurses as the doctorâs âhandmaidenâ and not as independent practitioners. The idea of nursing subservience is rooted in a gross misunderstanding of the nurseâs role,6 7 with outdated patriarchal and gendered ideas around male-doctor http://carlstephens.us/testimonial/sarah/ dominance and female subservience.8 9 From the outsider and non-informed perspective, the â¦IntroductionPhotovoice is a participatory action research method which provides cameras to a group of individuals and asks them to record their experiences over a period of can i get zithromax over the counter time.1 The photographs taken by participants are subsequently used as catalysts for discussion.

ÂPhotovoiceâ is so called because it aims to allow the photographic image to become the participantsâ voice in order to communicate their experiences to a variety of different audiences. Originally developed by Wang and Burris as a way to improve reproductive health policy for women in rural China, Photovoice can i get zithromax over the counter has three primary goals. (1) to enable participants to record and reflect on their communityâs strengths and concerns, (2) to promote critical dialogue and (3) to reach stakeholders (both policy makers and the general public) who are able to enact change.1Photovoice is a particularly relevant method for the field of Nursing because of its historical concern for social justice.2 Photovoice is similarly rooted in the ideas of social justice and emphasises individual and community empowerment through participation.

Likewise, it is important for nurses to possess an understanding of the lived experiences of can i get zithromax over the counter their own patients. This is particularly the case with those who are marginalised or those whose needs are unrecognised, or where nurses and others may struggle to understand how best to act in a practice situation.3 Successful use of this method could assist healthcare professionals and policy makers to â¦.

IntroductionThe WHO, the zithromax 500mg price International Council of Nurses and Nursing Now, zithromax online uk had planned to raise the global public profile of nursing in 2020 as a consequence of Florence Nightingales 200th anniversary. However, with the unexpected arrival of the antibiotics zithromax 500mg price zithromax in late 2019, nurses and the nursing profession found themselves having unexpected media attention. The degree and type of media attention that nursing achieved during this time were never anticipated. This article zithromax 500mg price considers the reality of nursing, both the role and profession in the UK in 2021 compared with the public perception and temporal media portrayal.Stereotypes of nursingThe media mediates public perception(s) through imagery and messaging.

However, with reduced public understanding of healthcare services, inadequate understanding of healthcare professional roles and responsibilities, and reduced health literacy in the general population,1 there is ample opportunity for misinformation and psychological bias (such as confirmation bias or stereotyping) to operate in the mainstream discourse dictating and perpetuating a false image of nursing.2 Given that nursing is the largest global occupation of predominately female employees3 and the National Health Service (NHS) is the largest employer in Europe, qualified nurses in the UK make up 26% of the total NHS workforce.4 The consequences of nursing having a poor public image subsequently impact the profession being undervalued, with poor recruitment, retention and indirectly influence patient healthcare.4Since the 1970s, nursing had forwarded Advanced Clinical Practice and specialist roles.5 Conversely, for decades, the media has portrayed nurses as predominantly subservient to doctors and referred to nurses as the doctorâs âhandmaidenâ and not as independent practitioners. The idea of nursing subservience is rooted in a gross misunderstanding of the nurseâs role,6 7 with outdated patriarchal and gendered ideas around male-doctor dominance and female subservience.8 9 From the outsider and non-informed perspective, the â¦IntroductionPhotovoice is a participatory action research method which provides cameras to a group of individuals and asks them to record their experiences over a period of time.1 The photographs taken by participants are subsequently used zithromax 500mg price as catalysts for discussion. ÂPhotovoiceâ is so called because it aims to allow the photographic image to become the participantsâ voice in order to communicate their experiences to a variety of different audiences. Originally developed by Wang and Burris as a way to improve zithromax 500mg price reproductive health policy for women in rural China, Photovoice has three primary goals.

(1) to enable participants to record and reflect on their communityâs strengths and concerns, (2) to promote critical dialogue and (3) to reach stakeholders (both policy makers and the general public) who are able to enact change.1Photovoice is a particularly relevant method for the field of Nursing because of its historical concern for social justice.2 Photovoice is similarly rooted in the ideas of social justice and emphasises individual and community empowerment through participation. Likewise, it is important zithromax 500mg price for nurses to possess an understanding of the lived experiences of their own patients. This is particularly the case with those who are marginalised or those whose needs are unrecognised, or where nurses and others may struggle to understand how best to act in a practice situation.3 Successful use of this method could assist healthcare professionals and policy makers to â¦.

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NCHS Data zithromax dangers Can i buy seroquel Brief No. 286, September 2017PDF Versionpdf icon (374 KB)Anjel Vahratian, Ph.D.Key findingsData from the National Health Interview Survey, 2015Among those aged 40â59, perimenopausal women (56.0%) were more likely than postmenopausal (40.5%) and premenopausal (32.5%) women to sleep less than 7 hours, on average, in a 24-hour period.Postmenopausal women aged 40â59 were more likely than premenopausal women aged 40â59 to have trouble falling asleep (27.1% compared with 16.8%, respectively), and staying asleep (35.9% compared with 23.7%), four times or more in the past week.Postmenopausal women aged 40â59 (55.1%) were more likely than premenopausal women aged 40â59 (47.0%) to not wake up feeling well rested 4 days or more in the past week.Sleep duration and quality are important contributors to health and wellness. Insufficient sleep zithromax dangers is associated with an increased risk for chronic conditions such as cardiovascular disease (1) and diabetes (2). Women may be particularly vulnerable to sleep problems during times of reproductive hormonal change, such as after the menopausal transition.

Menopause is zithromax dangers âthe permanent cessation of menstruation that occurs after the loss of ovarian activityâ (3). This data brief describes sleep duration and sleep quality among nonpregnant women aged 40â59 by menopausal status. The age range selected for this analysis reflects the focus on midlife sleep health. In this analysis, zithromax dangers 74.2% of women are premenopausal, 3.7% are perimenopausal, and 22.1% are postmenopausal.

Keywords. Insufficient sleep, menopause, National Health Interview Survey Perimenopausal women were more likely than premenopausal and zithromax dangers postmenopausal women to sleep less than 7 hours, on average, in a 24-hour period.More than one in three nonpregnant women aged 40â59 slept less than 7 hours, on average, in a 24-hour period (35.1%) (Figure 1). Perimenopausal women were most likely to sleep less than 7 hours, on average, in a 24-hour period (56.0%), compared with 32.5% of premenopausal and 40.5% of postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to sleep less than 7 hours, on average, in a 24-hour period.

Figure 1 zithromax dangers. Percentage of nonpregnant women aged 40â59 who slept less than 7 hours, on average, in a 24-hour period, by menopausal status. United States, zithromax dangers 2015image icon1Significant quadratic trend by menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they no longer had a menstrual cycle and their last menstrual cycle was 1 zithromax dangers year ago or less. Women were premenopausal if they still had a menstrual cycle. Access data zithromax dangers table for Figure 1pdf icon.SOURCE.

NCHS, National Health Interview Survey, 2015. The percentage of women aged 40â59 who had trouble falling asleep four times or more in zithromax dangers the past week varied by menopausal status.Nearly one in five nonpregnant women aged 40â59 had trouble falling asleep four times or more in the past week (19.4%) (Figure 2). The percentage of women in this age group who had trouble falling asleep four times or more in the past week increased from 16.8% among premenopausal women to 24.7% among perimenopausal and 27.1% among postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to have trouble falling asleep four times or more in the past week.

Figure 2 zithromax dangers. Percentage of nonpregnant women aged 40â59 who had trouble falling asleep four times or more in the past week, by menopausal status. United States, 2015image icon1Significant linear trend by zithromax dangers menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they no longer had a menstrual cycle and zithromax dangers their last menstrual cycle was 1 year ago or less. Women were premenopausal if they still had a menstrual cycle. Access data table zithromax dangers for Figure 2pdf icon.SOURCE.

NCHS, National Health Interview Survey, 2015. The percentage of women aged 40â59 who had trouble staying asleep four times or more in the past week varied by menopausal status.More than one in four nonpregnant women aged 40â59 zithromax dangers had trouble staying asleep four times or more in the past week (26.7%) (Figure 3). The percentage of women aged 40â59 who had trouble staying asleep four times or more in the past week increased from 23.7% among premenopausal, to 30.8% among perimenopausal, and to 35.9% among postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to have trouble staying asleep four times or more in the past week.

Figure 3 zithromax dangers. Percentage of nonpregnant women aged 40â59 who had trouble staying asleep four times or more in the past week, by menopausal status. United States, 2015image icon1Significant linear trend by zithromax dangers menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they zithromax dangers no longer had a menstrual cycle and their last menstrual cycle was 1 year ago or less. Women were premenopausal if they still had a menstrual cycle. Access data table for Figure zithromax dangers 3pdf icon.SOURCE.

NCHS, National Health Interview Survey, 2015. The percentage of women aged 40â59 who did not wake up feeling well rested 4 days or more in the past week varied by menopausal status.Nearly one in two nonpregnant women aged 40â59 did not wake up feeling well rested 4 days or more in the past week (48.9%) (Figure 4). The percentage of women in this age group who did not wake up feeling well rested 4 days or more in the past week increased from 47.0% among premenopausal women to 49.9% among zithromax dangers perimenopausal and 55.1% among postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to not wake up feeling well rested 4 days or more in the past week.

Figure 4 zithromax dangers. Percentage of nonpregnant women aged 40â59 who did not wake up feeling well rested 4 days or more in the past week, by menopausal status. United States, 2015image icon1Significant linear trend by menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they no longer had a menstrual cycle and their last menstrual cycle was 1 year ago or less. Women were premenopausal if they still had a menstrual cycle. Access data table for Figure 4pdf icon.SOURCE.

NCHS, National Health Interview Survey, 2015. SummaryThis report describes sleep duration and sleep quality among U.S. Nonpregnant women aged 40â59 by menopausal status. Perimenopausal women were most likely to sleep less than 7 hours, on average, in a 24-hour period compared with premenopausal and postmenopausal women.

In contrast, postmenopausal women were most likely to have poor-quality sleep. A greater percentage of postmenopausal women had frequent trouble falling asleep, staying asleep, and not waking well rested compared with premenopausal women. The percentage of perimenopausal women with poor-quality sleep was between the percentages for the other two groups in all three categories. Sleep duration changes with advancing age (4), but sleep duration and quality are also influenced by concurrent changes in womenâs reproductive hormone levels (5).

Because sleep is critical for optimal health and well-being (6), the findings in this report highlight areas for further research and targeted health promotion. DefinitionsMenopausal status. A three-level categorical variable was created from a series of questions that asked women. 1) âHow old were you when your periods or menstrual cycles started?.

Â. 2) âDo you still have periods or menstrual cycles?. Â. 3) âWhen did you have your last period or menstrual cycle?.

Â. And 4) âHave you ever had both ovaries removed, either as part of a hysterectomy or as one or more separate surgeries?. Â Women were postmenopausal if they a) had gone without a menstrual cycle for more than 1 year or b) were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they a) no longer had a menstrual cycle and b) their last menstrual cycle was 1 year ago or less.

Premenopausal women still had a menstrual cycle.Not waking feeling well rested. Determined by respondents who answered 3 days or less on the questionnaire item asking, âIn the past week, on how many days did you wake up feeling well rested?. ÂShort sleep duration. Determined by respondents who answered 6 hours or less on the questionnaire item asking, âOn average, how many hours of sleep do you get in a 24-hour period?.

ÂTrouble falling asleep. Determined by respondents who answered four times or more on the questionnaire item asking, âIn the past week, how many times did you have trouble falling asleep?. ÂTrouble staying asleep. Determined by respondents who answered four times or more on the questionnaire item asking, âIn the past week, how many times did you have trouble staying asleep?.

Â Data source and methodsData from the 2015 National Health Interview Survey (NHIS) were used for this analysis. NHIS is a multipurpose health survey conducted continuously throughout the year by the National Center for Health Statistics. Interviews are conducted in person in respondentsâ homes, but follow-ups to complete interviews may be conducted over the telephone. Data for this analysis came from the Sample Adult core and cancer supplement sections of the 2015 NHIS.

For more information about NHIS, including the questionnaire, visit the NHIS website.All analyses used weights to produce national estimates. Estimates on sleep duration and quality in this report are nationally representative of the civilian, noninstitutionalized nonpregnant female population aged 40â59 living in households across the United States. The sample design is described in more detail elsewhere (7). Point estimates and their estimated variances were calculated using SUDAAN software (8) to account for the complex sample design of NHIS.

Linear and quadratic trend tests of the estimated proportions across menopausal status were tested in SUDAAN via PROC DESCRIPT using the POLY option. Differences between percentages were evaluated using two-sided significance tests at the 0.05 level. About the authorAnjel Vahratian is with the National Center for Health Statistics, Division of Health Interview Statistics. The author gratefully acknowledges the assistance of Lindsey Black in the preparation of this report.

ReferencesFord ES. Habitual sleep duration and predicted 10-year cardiovascular risk using the pooled cohort risk equations among US adults. J Am Heart Assoc 3(6):e001454. 2014.Ford ES, Wheaton AG, Chapman DP, Li C, Perry GS, Croft JB.

Associations between self-reported sleep duration and sleeping disorder with concentrations of fasting and 2-h glucose, insulin, and glycosylated hemoglobin among adults without diagnosed diabetes. J Diabetes 6(4):338â50. 2014.American College of Obstetrics and Gynecology. ACOG Practice Bulletin No.

141. Management of menopausal symptoms. Obstet Gynecol 123(1):202â16. 2014.Black LI, Nugent CN, Adams PF.

Tables of adult health behaviors, sleep. National Health Interview Survey, 2011â2014pdf icon. 2016.Santoro N. Perimenopause.

From research to practice. J Womenâs Health (Larchmt) 25(4):332â9. 2016.Watson NF, Badr MS, Belenky G, Bliwise DL, Buxton OM, Buysse D, et al. Recommended amount of sleep for a healthy adult.

A joint consensus statement of the American Academy of Sleep Medicine and Sleep Research Society. J Clin Sleep Med 11(6):591â2. 2015.Parsons VL, Moriarity C, Jonas K, et al. Design and estimation for the National Health Interview Survey, 2006â2015.

National Center for Health Statistics. Vital Health Stat 2(165). 2014.RTI International. SUDAAN (Release 11.0.0) [computer software].

2012. Suggested citationVahratian A. Sleep duration and quality among women aged 40â59, by menopausal status. NCHS data brief, no 286.

Hyattsville, MD. National Center for Health Statistics. 2017.Copyright informationAll material appearing in this report is in the public domain and may be reproduced or copied without permission. Citation as to source, however, is appreciated.National Center for Health StatisticsCharles J.

Rothwell, M.S., M.B.A., DirectorJennifer H. Madans, Ph.D., Associate Director for ScienceDivision of Health Interview StatisticsMarcie L. Cynamon, DirectorStephen J. Blumberg, Ph.D., Associate Director for Science.

NCHS Data http://ld2technologies.in/can-i-buy-seroquel/ Brief zithromax 500mg price No. 286, September 2017PDF Versionpdf icon (374 KB)Anjel Vahratian, Ph.D.Key findingsData from the National Health Interview Survey, 2015Among those aged 40â59, perimenopausal women (56.0%) were more likely than postmenopausal (40.5%) and premenopausal (32.5%) women to sleep less than 7 hours, on average, in a 24-hour period.Postmenopausal women aged 40â59 were more likely than premenopausal women aged 40â59 to have trouble falling asleep (27.1% compared with 16.8%, respectively), and staying asleep (35.9% compared with 23.7%), four times or more in the past week.Postmenopausal women aged 40â59 (55.1%) were more likely than premenopausal women aged 40â59 (47.0%) to not wake up feeling well rested 4 days or more in the past week.Sleep duration and quality are important contributors to health and wellness. Insufficient sleep is associated with an increased risk for chronic conditions such as cardiovascular disease zithromax 500mg price (1) and diabetes (2). Women may be particularly vulnerable to sleep problems during times of reproductive hormonal change, such as after the menopausal transition.

Menopause is âthe permanent cessation of menstruation that occurs after the loss zithromax 500mg price of ovarian activityâ (3). This data brief describes sleep duration and sleep quality among nonpregnant women aged 40â59 by menopausal status. The age range selected for this analysis reflects the focus on midlife sleep health. In this analysis, 74.2% of women are premenopausal, zithromax 500mg price 3.7% are perimenopausal, and 22.1% are postmenopausal.

Keywords. Insufficient sleep, menopause, National Health Interview Survey Perimenopausal women were more likely than premenopausal and postmenopausal women to sleep less than 7 hours, on average, in a 24-hour period.More than one in three nonpregnant women aged 40â59 slept less than 7 hours, on average, in a 24-hour period (35.1%) (Figure 1) zithromax 500mg price. Perimenopausal women were most likely to sleep less than 7 hours, on average, in a 24-hour period (56.0%), compared with 32.5% of premenopausal and 40.5% of postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to sleep less than 7 hours, on average, in a 24-hour period.

Figure 1 zithromax 500mg price. Percentage of nonpregnant women aged 40â59 who slept less than 7 hours, on average, in a 24-hour period, by menopausal status. United States, 2015image icon1Significant quadratic trend zithromax 500mg price by menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they no longer had a menstrual cycle and their last menstrual cycle was 1 year ago or less zithromax 500mg price. Women were premenopausal if they still had a menstrual cycle. Access data zithromax 500mg price table for Figure 1pdf icon.SOURCE.

NCHS, National Health Interview Survey, 2015. The percentage of women aged 40â59 who had trouble falling asleep four times or more in the past week varied by menopausal status.Nearly one in five nonpregnant women aged 40â59 had trouble falling asleep four times or more in the past week (19.4%) zithromax 500mg price (Figure 2). The percentage of women in this age group who had trouble falling asleep four times or more in the past week increased from 16.8% among premenopausal women to 24.7% among perimenopausal and 27.1% among postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to have trouble falling asleep four times or more in the past week.

Figure 2 zithromax 500mg price. Percentage of nonpregnant women aged 40â59 who had trouble falling asleep four times or more in the past week, by menopausal status. United States, zithromax 500mg price 2015image icon1Significant linear trend by menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they no longer had a menstrual cycle and their last menstrual cycle was zithromax 500mg price 1 year ago or less. Women were premenopausal if they still had a menstrual cycle. Access data table for zithromax 500mg price Figure 2pdf icon.SOURCE.

NCHS, National Health Interview Survey, 2015. The percentage of women aged 40â59 who zithromax 500mg price had trouble staying asleep four times or more in the past week varied by menopausal status.More than one in four nonpregnant women aged 40â59 had trouble staying asleep four times or more in the past week (26.7%) (Figure 3). The percentage of women aged 40â59 who had trouble staying asleep four times or more in the past week increased from 23.7% among premenopausal, to 30.8% among perimenopausal, and to 35.9% among postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to have trouble staying asleep four times or more in the past week.

Figure 3 zithromax 500mg price. Percentage of nonpregnant women aged 40â59 who had trouble staying asleep four times or more in the past week, by menopausal status. United States, zithromax 500mg price 2015image icon1Significant linear trend by menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they no longer had a menstrual cycle and zithromax 500mg price their last menstrual cycle was 1 year ago or less. Women were premenopausal if they still had a menstrual cycle. Access data zithromax 500mg price table for Figure 3pdf icon.SOURCE.

NCHS, National Health Interview Survey, 2015. The percentage of women aged 40â59 who did not wake up feeling well rested 4 days or more in the past week varied by menopausal status.Nearly one in two nonpregnant women aged 40â59 did not wake up feeling well rested 4 days or more in the past week (48.9%) (Figure 4). The percentage of women in this age group who did not wake up feeling well rested 4 days or more in the past week increased from 47.0% among premenopausal zithromax 500mg price women to 49.9% among perimenopausal and 55.1% among postmenopausal women. Postmenopausal women were significantly more likely than premenopausal women to not wake up feeling well rested 4 days or more in the past week.

Figure 4 zithromax 500mg price. Percentage of nonpregnant women aged 40â59 who did not wake up feeling well rested 4 days or more in the past week, by menopausal status. United States, 2015image icon1Significant linear trend by menopausal status (p <. 0.05).NOTES.

Women were postmenopausal if they had gone without a menstrual cycle for more than 1 year or were in surgical menopause after the removal of their ovaries. Women were perimenopausal if they no longer had a menstrual cycle and their last menstrual cycle was 1 year ago or less. Women were premenopausal if they still had a menstrual cycle. Access data table for Figure 4pdf icon.SOURCE.

Â. 2) âDo you still have periods or menstrual cycles?. Â. 3) âWhen did you have your last period or menstrual cycle?.

141. Management of menopausal symptoms. Obstet Gynecol 123(1):202â16. 2014.Black LI, Nugent CN, Adams PF.

Tables of adult health behaviors, sleep. National Health Interview Survey, 2011â2014pdf icon. 2016.Santoro N. Perimenopause.

From research to practice. J Womenâs Health (Larchmt) 25(4):332â9. 2016.Watson NF, Badr MS, Belenky G, Bliwise DL, Buxton OM, Buysse D, et al. Recommended amount of sleep for a healthy adult.

National Center for Health Statistics. Vital Health Stat 2(165). 2014.RTI International. SUDAAN (Release 11.0.0) [computer software].

2012. Suggested citationVahratian A. Sleep duration and quality among women aged 40â59, by menopausal status. NCHS data brief, no 286.

Is zithromax good for sinus

IntroductionTracing the implications is zithromax good for sinus of developments within genetic science has become a major Where to buy antabuse area of research and debate within medical sociology and allied disciplines (Martin and Dingwall 2010). Sociologists and bioethicists have long argued that technological developments are leading to an increasing âgeneticisationâ of many aspects of health and healthcare (Lippman 1991). This can particularly be seen in the establishment and adoption of is zithromax good for sinus a âgenomics agendaâ within public health institutions (Mwale and Farsides 2021). Genomics involves the study of all of a personâs genes (the genome) and how genes interact with each other and the environment.

The expansion of this area of medicine has been made possible by technological development, economic investment and the application of political capital. Going beyond the individual gene offers new diagnostic is zithromax good for sinus and treatment possibilitiesâparticularly for complex and rare conditions.Alongside these clinical opportunities, there are substantial social implications. As Martin and Dingwall (2010, 514) have noted, one of the distinguishing features of genetics (and now, genomics) is its promissory discourse which relies on a mobilisation of âhigh expectations and social anxietiesâ. Such can involve a reconfiguring of expectations, hopes and fears about the future (Martin and Dingwall 2010) is zithromax good for sinus .

As Parker (2012) argues, ethical problems within genetics emerge against, and need to be understood in the context of, a rich background of complex but largely day-to-day practice. This is also true for the experiences of those engaging with genomics as patients or carers. An engagement with genomics is is zithromax good for sinus always mediated through, and interpreted against, peoplesâ own lived (and everyday) experience (Featherstone et al. 2006).Understanding the perspectives of those who engage with genomic medicine services is (or, should be) an important facet of social scientific enquiry.

Particularly, as previous research has suggested that patientsâ expectations and assumptions about ethical practice may not always be the same as those of healthcare professionals (Dheensa, Fenwick, and Lucassen 2016). However, as Lewis is zithromax good for sinus et al. (2020) note, there are relatively few qualitative studies that explore the perspectives of parents who have been offered genomic sequencing to diagnose their childâs rare conditions in the UK. As a result, we are less aware of how families see the impact on their lives of the positive imagined futures presented by scientists, clinicians is zithromax good for sinus and policy makers.

We might also be prone to reducing the experience of families down to that of travellers on the âdiagnostic odysseyâ so often referred to in literature (Rosell et al. 2016). Our research aims to is zithromax good for sinus collate rich accounts of lived experience in order to make visible the diverse, variable and multilayered everyday lives of patients and families and how these correspond with emerging, rapidly changing, and complex fields such as genomic medicine. While the application of genomic technologies has the potential to transform patients' lives, the excitement (or, âgenohypeâ (Kakuk 2006)) around these technologies mustn't eclipse the everyday experiences of the people who live with, and care for, those with genetic conditions.

As Kerr et al. (2021) have argued, these promissory claims are fragile and contested, particularly when set against everyday encounters.Dealing with the uncertainty that the advent and subsequent mainstreaming of clinical genomics brings requires working in a is zithromax good for sinus way that empowers âvoices at the margins so that they may help craft creative options and [create] opportunities for collective consensual decision-making that are respectful of differenceâ (Baylis 2019, 175). This involves finding ways to speak âwithâ rather than âforâ, creating a way for the ideas and interests of stakeholder communities to rise to the fore, and hence, our interest in participatory-writing.Writing worldsWriting, as we see it, belongs at the heart of social research. It is part of is zithromax good for sinus research.

A research method in its own right. A means of enquiry, exploration and articulation. (Phillips and Kara (2021, 8)Finding ways to understand, evoke and (re)present the experiences is zithromax good for sinus of research participants is at the heart of social scientific inquiry. Methodological plurality and creativity is increasingly celebrated as allowing for more nuanced perspectives, different modalities of knowledge and more participatory approaches to doing research with (as opposed to simply, on) participants (DeLyser and Sui 2014).

The challenge, as described by Deacon (2000) is to âfind ways to make living systems actually come aliveâ. Given that âsocial is zithromax good for sinus researchers work with participants to explore their experiences and perspectives in their own wordsâ (Phillips and Kara 2021, 105) there are opportunities to think more creatively about how we come to elicit, produce and obtain these words. Written words, not just spoken.As Richardson (2000, 923) argues âwriting is also a way of 'knowing'âa method of discovery and analysisâ. Explorations of using writing as a mode of inquiry have seen experimentation with different is zithromax good for sinus written forms (Eshun and Madge 2012.

Lorimer 2018. Phillips and Kara 2021) as well as autobiographical accounts in the style of autoethnographic methods (Bochner and Ellis 2002). However, as Elizabeth (2008, 4) notes, such a use of autobiographical writing as a method remains underused and is âis largely confined to those is zithromax good for sinus sociologists who choose to write personally. Participants are rarely granted a similar opportunityâ.

Certainly, many such examples can be found of this style of academic is zithromax good for sinus writing, and obviously, this is not to downplay their contributions and insights, but to draw attention to the potential ways in which such methods can be extended to engage with the knowledges of participants. There is perhaps something troubling about the way that âwritingâ is something retained as the privileged territory of the researcher.Participatory methods have been invoked to great success across a diverse range of settings. Participatory drawing (Literat 2013), participatory photography (Prins 2010), participatory video (Kindon 2003) to name just a few. Yet there appears to remain a hesitancy to extending these principles of participation to that is zithromax good for sinus staple of research.

Writing. Many of the benefits that have been identified as resulting from social researchers using writing as method (Phillips and Kara 2021. Richardson and St is zithromax good for sinus . Pierre 2018) can also equally arrive from enabling those we research with to contribute illuminating understandings through the processual experience of writing.

For example, is zithromax good for sinus in writing about writing as a method of inquiry, Richardson and St. Pierre (2018, 1428) emphasis original) reflect on the benefits of how âthought happened in the writingâ. Similarly, Phillips and Kara (2021, 17) explain how âwriting can help us to explore experiences and identify and express emotionsâ. Of course, such a generation of new ideas, understandings and connections through writing is not limited to those doing research, but extends to all those who might embrace and engage in the exploratory and expressive acts and processes emerging from an is zithromax good for sinus engagement in writing.Asking participants to write is not an unusual method in and of itself.

It is the core thing that we ask people to do when we send them qualitative questionnaires and include room for open-ended responses in our surveys. Diary methods have a rich history as an enlightening form of empirical investigation, capable of offering insights into everyday life (Latham 2003). The Mass Observation Project and Archive similarly relies on participants becoming diarists and writers, responding in a written is zithromax good for sinus form and recording their experiences and thoughts (McGlacken and Hobson-West 2022. Smart 2011).

Yet, despite such utilisations of inscription, there still remains something of a sense of impropriety to the notion that research participants may write, rather than speakâone in is zithromax good for sinus conflict with, and challenging to, the privileged place which interviewing occupies within qualitative inquiry (Elizabeth 2008). In describing the Mass Observation Project, Smart (2011, 541) describes how, until more recently, sociological engagement with the written narratives produced through the Mass Observation Project has been limited âbecause the free way in which they wrote was not regarded as sufficiently rigorous for sociological analysisâ. Attitudes have since changed however, to recognise the richness and depth of the narratives that many Mass Observation panellists produce (Smart 2011).There are substantial benefits in asking participants to write about their lives (Elizabeth 2008). Using writing is zithromax good for sinus as a method of inquiry raises the possibility for âproducing different knowledge and producing knowledge differentlyâ (St.

Pierre 1997, 175). Writing creates is zithromax good for sinus a very different modality of representation. It allows research participants to âgive the researcher their stories and words in an exact formâ (Deacon 2000). As Penn (2001, 50, emphasis original) argues, to write is an act of agency.

Âwhen we write we are no is zithromax good for sinus longer being done to. We are doingâ. This can be a particularly important mechanism of representation for certain groups and narratives, particularly if writing about events where agency may have been lacking for the author. Writing thus provides a way of transferring a level of control and ownership to participants âin a way that traditional interviews cannotâ is zithromax good for sinus (Burtt 2020, 7).

This could simply be about enabling participants to take the time to narrate their experiences in their own terms. This âgiving is zithromax good for sinus timeâ may be at odds with some forms of social science that prioritise and privilege the immediacy and synchronicity of the research interview as a strategy for overcoming anxieties about âpremeditationâ. Yet for some topics and participants, the opportunity to respond carefully and thoughtfully allows a more sensitive immersion in research. Participants can spend as long as they need to complete their written reflections, considering carefully their responses in an atmosphere less structured by the pressures of direct questioning (Burtt 2020).

Participatory-writing can provide windows on subjects that would otherwise be is zithromax good for sinus hard to reach by virtue of their personal or sensitive nature (Phillips and Kara 2021). Writing can afford a level of safety in providing space, time and privacy to consider the framing and language in which disclosures and stories are told, navigating and articulating vulnerability and uncertainty. Participants are able to craft their voice. Such crafting may again be challenged by those concerned about the risks to the generation of âtruthfulnessâ, though to assume that only through the imposition of is zithromax good for sinus questions on the spot during interviews are authentic and authorative accounts produced is flawed.

To quote Elizabeth (2008, 14):Writing provides researchers with access to the unique, partial and situated perspectives of our participants. We gain insight into the discourses that circulate in is zithromax good for sinus their social milieu and the way in which these vie for our participants' subjectivities.Writing can enable people to overcome the effects of self-censorship, allowing self-revelatory forms of expression (Elizabeth 2008). While oral research methods are often based on the dialogue between interviewer and interviewee, writing tasks, as Elizabeth (2008) describes, can put past and present selves into dialogue with each other. Writing brings a level of flexibility that can aid progression beyond fixed questions and rigid categories and vocabularies introduced by the researcher, participants can employ their own concepts and terminology, and even, to certain extents, define the questions they wish to ask and answer (Burtt 2020).

Similarly, participatory-writing as a is zithromax good for sinus method is less influenced by the mediating effects of the interviewer (or other focus-group participants). Interjections, perceived cues, puzzled looks or requests to know that oneâs narrative is making sense (Burtt 2020. Elizabeth 2008).This is not to claim that writing produces accounts that can be universally representative or the source for generalisations about the social world, rather the impact and intention of writing as a method is to be illustrative (Evans 2021. Phillips and is zithromax good for sinus Kara 2021).

By collating multiple autobiographical accounts from participants with a shared connection, social researchers are left with a âmethod through which we might investigate that more conventional social space of the collectiveâ (Evans 2021, 14). This in itself allows is zithromax good for sinus for the inclusion of multiple âvoicesâ within the final written product of research, giving a platform to participants that has the potential to be less directly mediated and subject to academic meddling.This is not to position writing as an epistemologically âbetterâ method of inquiry than more conventional oral research practices, but rather to recognise that writing can allow the production of very different kinds of personal revelations from participants than what may be forthcoming when spoken. That creative or autobiographical written accounts may result in omissions and imperfect interpretations of the self is well recognised (Evans 2021), but such critiques can likewise be applied to the majority of social research methods. The point is to understand how different methods can allow different facets of life and self to arise to the fore.

Like all methods, participatory-writing has its time and place is zithromax good for sinus (Phillips and Kara 2021). Elizabeth (2008) suggests that there is great value in using writing exercises in conjunction with interview or focus group discussions.While embracing the ways that participantsâ âcrafted written work stands to provide eloquent answers to research questions and speak to research interests from original anglesâ (Phillips and Kara 2021, 114) it is also important to remember that often the additional product of participatory-writing research are the conversations and reflections that occur along the way. Indeed, it is the practice and process of participating that can matter the most, rather than the outputs of words on a pageâas useful and illuminating as they may be (Phillips and Kara 2021). The ethical bargain struck with participants may mean that on occasion the primary product (writing) is never seen nor shared, only the experience of producing it.While social science may not have a long tradition of encouraging participants themselves to write as a mode of inquiry, as part of the rise of expressive and arts-based therapies there has been a renewed attention to writing as a therapeutic technique (Elizabeth 2008 is zithromax good for sinus .

Pennebaker and Chung 2007. Peterkin and is zithromax good for sinus Prettyman 2009. Robinson 2000). There are numerous studies that explore forms of expressive writing as a means for coping with a variety of situations (Bolton 2008.

Gebler and Maercker 2007), yet few studies that take up Richardson (2000) challenge of using writing as a way of inquiring, understanding and âknowingâ more about such experiencesâparticularly in a fully participatory vein (though see Phillips and Kara (2021) for an insightful volume that catalogues recent efforts to do is zithromax good for sinus just this). It is perhaps such codings of writing as having âtherapeuticâ applications which has stifled experimentation by qualitative researchers. Similarly, the assumption that writing exercises have a therapeutic component (by design, intention or as a predictable but unintended side effect) may make ethics committees cautious in is zithromax good for sinus their policing of such methods. Though again, the âresearch interviewâ is often structured by, and experienced as, a confessional (Crowe 1998) and therapeutic opportunity (Birch and Miller 2000).Of course, the open-endedness of writing presents challenges as well as opportunities (Phillips and Kara 2021).

As Phillips and Kara (2021, 76) recognise, we write âwithin the means available to usâ, with dominant discourses often infiating work that hopes to be creative, searching and illuminating, becoming more conventional or hegemonic. Writing obviously has the potential to be an exclusionary activity, with the possibilities for participation influenced by numerous factors such as class, gender, health and cultural differences, alongside past educational experiences, language fluency, habit, practice and even time is zithromax good for sinus available. Participation can be challenging and uncomfortable, and may be prefigured by pre-existing attitudes and aptitudes to the written formâand the sharing thereof. As Phillips et al.

(2021, 54) poignantly note, âcreative writing is is zithromax good for sinus not for everyone, all of the timeâ. Rather than acting as a participatory method, instituting writing as the method by which people take part in research can deter participation (Phillips and Kara 2021). However, McMillan and McNicol (2021, 86) suggest rather than an imposition of what writing should be, there are ways of working that can allow is zithromax good for sinus âa communityâs existing ways of writing and knowing to come throughâ. Such can involve cultivating a sense of inclusion, safety and trust among participants (Phillips et al.

2021)âmany of the core values of qualitative research at large, around building rapport and relationships are particularly applicable to using writing as a method of participatory inquiry.It is important to bear in mind that writing is directly affected by the nature of the intended audience, and particularly the levels to which any audience may be imagined to have been conferred with evaluative powers (Elizabeth 2008). Similarly, and as with any form of is zithromax good for sinus qualitative research, accounts produced through writing are shaped by the possibilities and desires for levels of anonymity for the authors involved. Further, we must recognise that writing fixes wordsâand as Elizabeth (2008) notes, hence also fixing constructions of selves and narratives. Though given that most interview research involves a subsequent transcription to an often equally fixed written form, this is perhaps not too dissimilar.

Indeed, the opportunity for a level of editorial oversight of oneâs own words and stories is zithromax good for sinus is one of the benefits brought about through participatory-writing. However, while writing as a mode of inquiry can be less intrusive and less pressurised, especially when taking place in the writerâs own time and space, this also means there are also fewer opportunities for researchers to provide emotional support, reassurance or to steer questioning away from distressing topics (Burtt 2020). There are thus complex ethical considerations prior to asking is zithromax good for sinus participants to write, to sit and mediate on a topic, in ways thatâthough possibly enjoyable, comforting and self-revelatory, can also be frustrating and saddening (Elizabeth 2008. Phillips and Kara 2021).As well as affecting those doing the writing, writing also has the potential to affect readers in ways that formal academic writing cannot (Phillips and Kara 2021).

Participantsâ writings can be well suited to disseminating research, particularly as the expressive nature of a participantâs writing can be seen to be âevokingâ emotion rather than just âexplainingâ emotion. Showing rather than telling is zithromax good for sinus (Andrews 2018). Participant-produced stories have an âenliveningâ quality, and can have a valuable role to play as communicative resources, buildingâand bridgingâempathy (Parr 2021). Parr's work in particular demonstrates how stories can lead to changes in behaviours and styles of engagement within professional communities (Parr 2021).1Participatory-writing with people affected by rare genetic conditionsThis research is part of a larger participatory study working creatively and collaboratively with families touched by genetic conditions to explore the experiences of patients and participants in genomic medicine and research.

Our aim is to identify the overlaps and gaps between practitioner and patient accounts of ethically relevant issues as they occur in clinical genomics is zithromax good for sinus and find ways of supporting people to feel more comfortable when having challenging conversations. Our principal research question is whether accounts of patient experience might contribute to the preparedness of clinicians to deal with the ethical challenges of genomics practice.It was this ambitious research question that piqued our interest in participatory writing, with the hope that such narratives might express and evoke aspects of lived experience in productive and affective ways, beyond what was possible through more conventional social-scientific registers and/or participatory practices of âpatient engagementâ. As Frank (2012) notes, equipping healthcare professionals with a sense is zithromax good for sinus of âwhat to listen forâ can enhance âprofessional listeningâ.Co-production is at the heart of the research project. Our research is directly informed and guided by people with lived experience.

We have a participatory steering group who attend project meetings, share their ideas and experiences, and contribute and comment on the design of research activities. This has allowed us to develop relationships with participants, build is zithromax good for sinus trust and confidence, and demonstrate our commitment to confidentiality, giving people a voice, and effecting change. Thus, we see âpatient and public involvementâ as a constant and continual process, rather than an initial involvement at the outset of the project. Our research involves continued dialogue and input from people with lived experience of genomics and the active enrolment of their expertise, feedback and insights into the design is zithromax good for sinus of this projectâin all its extents, including research questions, methodology, recruitment and dissemination.

Our participants have acted as peer-researchers and had oversight of the writing of this article.Conversations with members of this steering group indicated an interest in, and encouragement to, explore ways of researching using arts-based methods. Working with an author and life-writing tutor, we designed a participatory-writing programme that would encompass an hour-long online facilitated workshop on a weekly basis for 6âweeks. We were conscious of accommodating the is zithromax good for sinus availability of people with often complex caring responsibilities (particularly during buy antibiotics). Finding a mutually acceptable time to run the writing group was one of the largest challenges, although the extent to which individual participants committed to attending despite, and alongside, their commitments of caring and work (exacerbated by buy antibiotics lockdowns) gave some insight into how much potential value people saw in this work.

Aware of the online and disembodied nature of the groups, we sent participants a small âcare packageâ of stationery ahead of the meetings to show our appreciation and to help build a sense of occasion. We were aware that through writing (and reading othersâ stories), people would be brushing up against personal and emotional topics, which could cause, or even reveal, is zithromax good for sinus a level of upset and anxiety. Our aim was that the writing groups might exist as a âsafe spaceâ to explore these narratives. However, while we had hoped participants would find being involved in our research empowering and cathartic, we were keen to stress that our research activities did not constitute a form of âart therapyâ is zithromax good for sinus .

In preparing for the possibility of distress, we appointed a colleague (external to the project) with extensive pastoral experience who could be called on to support participants (and researchers) should the experience become challenging.Initially, we recruited participants through our existing networks and relationships. A âpurposive samplingâ technique (Sarantakos 2012) with our aim being ânot to choose a representative sample, rather to select an illustrative oneâ (Valentine 1997, 112). These were people who served is zithromax good for sinus as âpatient representativesâ on ethical and governance panels relating to genomics or who were active in patient led organisations. These were people whose voices and expertise had already been sought out in different fora.

Through a level of âsnowballingâ, these initial participants made suggestions for others within their advocacy networks and patient communities who they felt could contribute toâand enjoy taking part inâour research. The participant group was mixed in gender, though with a larger number of women, and ages ranging is zithromax good for sinus from mid-30s to early 50s. All of our participants had direct experience of genetic disease within their families, with many having a significant level of caring responsibility as a result. Our participants had experience of participating in large genomic medicine projects, such as the 100â000 Genomes Project and/or the is zithromax good for sinus Deciphering Developmental Disorders Study.

Many of the participants we were working with had an active blogging practice, and were keen to take part in research in a way that made use of their skills, interests and communicative strengthsâbut also to get something out of the research themselves, in learning new ways to hone their writing practice. Others took a little more convincing, and were particularly hesitant about how doing some writing could be scientifically productive or of value.Week by week, each session involved our professional writing tutor introducing different creative writing exercises, designed to enable both novice and experienced writers to begin to express ideas and thoughts with greater fluency. This included being introduced to, and trying out, techniques such as free-writing, narrative-distancing and writing in response to a given prompt (such as telling the story of a cherished is zithromax good for sinus object). At the end of each session, participants were given a creative exercise to tackle in their own time.

During the introduction and after each in-session activity participants were invited to reflect directly on their experience and the content of their writing. Participants were invited, but never is zithromax good for sinus pressured, to share their writing with the group by reading a short excerpt. Discussion was guided by the facilitator to focus on the experience of the process of writing, and to prompt the group to notice any thematic similarities or differences in written accounts. The emphasis throughout was on building confidence in expressing lived experience.Our first writing groupâwho affectionately became known as the âThursday Writersââconsisted of five participants, alongside the life-writing tutor, and the first author (RG), is zithromax good for sinus who took a participatory role in the group, rather than solely an observational one.2 Our intent was that participants would read extracts from their writing, and hopefully share it with the research team.

However, participants were quickly very vocal about wanting to share their outputs in full among the other members of the group too, and we created a secure online space where people could upload what they had written in the sessions or as part of the âhomeworkâ. Some participants chose to use word processors, others uploaded photos of their handwritten pages. Reflecting on the impact of reading other peopleâs writing and noting points of connection became a regular feature of discussions (a point is zithromax good for sinus we will return to later on).Our âThursday Writersâ were hugely supportive of the participatory-writing programme, and several participants supported us to recruit for a second 6-week programme with an additional seven participants (which also ended up running on a Thursday). All of the writing group sessions were recorded, with participantsâ consent, which has allowed us to revisit and reflect on the types of narratives that were created and shared, alongside those which were uploaded to a âsharing folderâ (one for each groupâit was key that the âsafe spaceâ created for sharing writing was limited to the people who were in the online sessions together).

Participants also consented to their written pieces being used in publications, a question which was revisited in the drafting of this article.After each 6-week programme, we arranged reflective interviews with participants, giving everyone an opportunity to share their thoughts and experiences regarding participating in is zithromax good for sinus the writing groups. The written pieces that participants had produced throughout the course also served as an elicitory device during these conversations (Bagnoli 2009), allowing us to delve further into the context, meaning and emotions surrounding the participantâs writing, as well as asking them to reflect on what the piece represented or evoked that may be outside of view to others.We have specifically chosen not to attribute interview quotes nor written pieces to individuals. This is to aid confidentiality, which was an important theme for participants (see later discussion). While we could have is zithromax good for sinus chosen to use pseudonyms or participant codes, these can be reductive.

Through not attributing quotes or pieces of writing to individuals, we are able to demonstrate commonalities across different and diverse rare genetic conditions.Engaging with the written pieces produced through participatory-writing involved paying close attention to the stories (and, processes of storying) that were written, aiming to better understand their impact and significance (Phillips et al. 2021). For us, this is zithromax good for sinus involved drawing on aspects of dialogical narrative analysis (DNA) (Frank 2010, 2012). Such an analytical approach involves questioning:What is the storytellerâs art, through which she or he represents life in the form of a story?.

And what form of life is reflected is zithromax good for sinus in such a representation, including the resources to tell particular kinds of stories, affinities with those who will listen to and understand such stories, vulnerabilities including not being able to tell an adequate story, and contests, including which version of a story trumps which other versions?. (Frank 2012, 33).DNA involves understanding stories as artful representations of lives. It involves considering why someone might choose to tell such a story and exploring how identities are being formed and sustained by the storying process. DNAâs concern is how to speak with a research is zithromax good for sinus participant rather than about them, and show what is at stake in a story as a form of response.

A central premise of DNA is that it does not seek to interpret stories or âdiscover truthsâ that have âescaped the attention of the storytellersâ (Frank 2012), rather the intent is to witness stories, and enable voices to be both heard and evocativeâoften through positioning them into dialogue with other, but similar, diffuse voices. Thus, the purpose of a dialogical narrative analysis is not to âdisplay mastery over the story, but rather to expand the listenerâs openness to how much the story is sayingâ (Frank 2010, 88).Writing everyday storiesSimilarly to Phillips et al. (2021), our approach was not to extract stories from our participants, but enable them to is zithromax good for sinus recount the stories that were of importance to them. Although we were interested in the dawn of genomic medicine and the sociotechnical imaginaries involved (Mwale and Farsides 2021), we were also interested in what everyday life is like for the people who live with, and care for, those with genetic conditions, and how genomics acts to reconfigure (or, perhaps, does not) aspects of peopleâs lives outside of the clinic.

As Prainsack, Schicktanz, and Werner-Felmayer (2014, 11) argue, genetics takes place âoutside of the is zithromax good for sinus clinic as well as within. It takes place in families, patient groups, state organisations, on the Internet, and on the international marketâ.The phrase âeveryday lifeâ is often associated with the âordinary, routine and repetitive aspects of social life that are pervasive and yet frequently overlooked and taken-for-grantedâ (Pinder 2011, 223). Finding significance in the everyday and respect for the âmundaneâ draws from a feminist commitment to understand the material conditions of peopleâs lived experience and practices (Hanson 1992). Attending to âeveryday lifeâ allows a focus on those practices and aspects of is zithromax good for sinus life that are hidden by dominant narratives (Highmore 2002).

An everyday perspective challenges privileging certain spaces, such as âthe clinicâ, as being the locus of how and where people experience genomic medicine, to instead explore that which exceeds these formalised encounters and overflows into other domains of life. For Lefebvre (1991, is zithromax good for sinus 97), everyday life is âwhat is left overâ. Our participantsâ writing provided us with a viewpoint of those things which are âleft overâ from accounts of genomics. It draws our attention to the way that geneticisation (Lippman 1991) and genohype (Kakuk 2006) infiate everyday life, but also how, frequently, at an everyday level, these new sociotechnical regimes may have little impact.

With genomics being presented as a cornucopia and salve for all manner of health and social challenges, understanding âwhat is zithromax good for sinus is left overâ is an important effort in making visible the inconspicuous aspects of living with rare genetic conditions. As Nicholas and Gillett (1997) argue, to begin to appreciate the bioethical issues at stake, we need to fill in the gaps that exist within our understanding, something which cannot be done without narrative insights. Similarly, reflecting on genetics practice at large, Featherstone et al. (2006, xii) argue is zithromax good for sinus that âa sound appreciation of everyday social reality is of profound importance for professional practiceâ.

Thus, as Frank (2012, 36) notes, âto describe the world may be the most effective way to change itâ.Many of the pieces of writing that emerged from the groups touched on these sorts of everyday realities, and hidden complexities, of caring for people affected by rare genetic conditions.With âMy Day Beginsâ, I just sat down, and I was typing rather than writing freehand because Iâm faster. And yeah, there it was, and I is zithromax good for sinus hardly had to change anything, after the first draft. I was really pleased with it, and you know I started off just trying to make it as factual as possible, as matter of fact as possible. And it wasnât until I shared it with other people that then they went âWhoaâ.

And I is zithromax good for sinus went âWhoa?. Really?. This is life.â And I thought that was very interesting.As one of our participants commented, writing these sorts of creative pieces allowed them to draw attention to the complexities involved in careâpractical, emotional and identity-based complexities, not just medicalised complexities. As the author of âMy Day Beginsâ (figure 1) notes,'My Day Begins'âa piece of writing from is zithromax good for sinus one of our writing groups.

WAV, wheelchair accessible vehicle." data-icon-position data-hide-link-title="0">Figure 1 'My Day Begins'âa piece of writing from one of our writing groups. WAV, wheelchair accessible vehicle.Thereâs stuff in there about the complexity of caring for somebody, the practical complexities, and thereâs stuff about the emotional complexity of being part of a is zithromax good for sinus wider family unit and still having to cope. And thereâs this stuff in there about having to put aside your sense of self and be a parent or a carer. And I think a lot of people who don't have caring responsibilities would never think twice about that.Bury (1982, 169) noted how illness can result in âbiographical disruptionsâ, where âthe structures of everyday life and the forms of knowledge which underpin them are disruptedâ.

Such was certainly present in is zithromax good for sinus the written pieces that our participants produced. Though, rather than a singular disruption, years with no diagnosis, potential misdiagnoses and potentially having to adapt to receiving a diagnosis for a condition different to what had been expected (Dheensa, Lucassen, and Fenwick 2019), means that genomics follows multiple disruptions to both forms of knowledge and everyday life. Figure 2 exemplifies this.'Freewriting, Session #3'âa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 2 'Freewriting, Session #3'âa piece of writing from one of our writing groups.Yet even in writing these representations, participants were keen to hold attention to these acts as being specifically everyday. They were is zithromax good for sinus aware and quite critical of the possibility for acts of interpretation to render their writing as something very different.

One participant described the challenge of eliciting empathetic responses, rather than just solely sympathetic responses.Sometimes I feel in this juxtaposition about not wanting to be personified as a superhero, because weâre not, we are just doing what the majority of parents would do if they had to do it, that is how it is.As a route to enabling the possibility of empathetic response, many of those who took part in the participatory-writing sessions commented how their pieces perhaps captured aspects of their lives that they felt were outside the view and understanding of medical professionals. The lack of alignment between families and healthcare professionals as to what ethical practice around genomics might mean and require (Dheensa, Fenwick, and Lucassen is zithromax good for sinus 2016) can be produced in part by this lack of visibility and knowledge about what is important and what is experienced on an everyday level.âThey [healthcare professionals] tend to have a close in view of it rather than a birdâs eye view of it, in a way all of that stuff and stress is invisible.ââI think clinic doctors perhaps don't see anything like this side of things.ââIâve written quite a lot and I think other people have as well about how it feels to be a family with or without a diagnosis, rather than what the medics or what the team seems to think is important.âNoting things as being exterior to more commonplace comprehensions was not always presented as disenfranchisement or critique of healthcare professionals, but rather a way of drawing attention to the multiple forms of lived expertise that parents were called on to develop and mobilise. One piece, âWord Salad Counsellorâ (figure 3), in particular showcased how engagements with genomic medicine required patients and parents to develop new skills and knowledges, specifically in navigating the complex scientific languages through which clinicians enact and practice care.'Word Salad Counsellor'âa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 3 'Word Salad Counsellor'âa piece of writing from one of our writing groups.There is much to take away from figure 3. The use of humour to mask painful experiences.

The hyper awareness of space and is zithromax good for sinus environment. The use of language, metaphors and similes. The lack of attention to is zithromax good for sinus important personal information (e.g. Misgendering the child) in lieu of a focus on complex scientific information.

The unfortunate use of the word âexcitingâ when attached to what is in fact bad news for this family.In particular, this tongue-in-cheek piece highlights how accessing genomic medicine services can require quickly learning scientific vocabulary in order to interpret clinical communications and be confident in understanding, participating and obtaining, optimum care. The challenges of the technical language surrounding genomics (and health information in general) are well established is zithromax good for sinus (Stuckey et al. 2015). The onus is frequently on the patient to acquire the expertise to interpret the information being providedâas described in the quote below from an interview with the author.Yeah, I mean itâs amplified but itâs not amplified by very much at all.

I took is zithromax good for sinus your worldâs worst plausible genetic counsellor and went from there. The surreal-ness of it actually comes from a lot of the stuff thatâs real in a way because I went back to it and thought which bits really chimed?. Of course, itâs all the stuff like, âOh, is zithromax good for sinus yes, this is a known variant of not a great deal of significance.â All those kinds of things. To most people it sounds like Douglas Adams but itâs not, itâs just what arrives in the letter.

Okay, should I worry about this?. Do I need to translate it before I worry is zithromax good for sinus about it?. What are we doing here?. â¦ Iâve rapidly built on my A level biology knowledge which was already 30 years out of date.

When I learnt my genetics the human is zithromax good for sinus genome hadnât been sequenced so itâs all happened in my lifetime really and itâs been a bit of a helter-skelter. In a way youâve got to learn it â¦ itâs all delivered in closed codes and so in order to pick any of the useful information out of that youâve got to learn it quick.Although not the intended purpose of the writer, the original piece of writing and the follow-up discussion provide invaluable insight into the way theory and practice come together (or do not) in the clinic. The encounter is zithromax good for sinus highlights the centrality of what can be described as a âdiffusion modelâ (McNeil 2013) of public engagement efforts around genomics. That is, the aspirations and follow on assumptions that groups will acquire scientific knowledge about new technologies via a âtrickling downâ or âosmosisâ of information.

This is slightly different fromâthough, entangled withâideas that suggest a âdeficit modelâ of public engagement, that takes as its starting point a deficiency in understanding that can be solved through more or better education (Marks 2016). A diffusion approach instead assumes that those encountering a new technology will actively is zithromax good for sinus seek, access, comprehend and use related information. Institutionally, it is a passive (indeed, neoliberal) approach to public engagement that positions individuals as responsible for their own empowerment. In practice, the prevalence of a diffusion model of public engagement is potentially as equally problematic as the well-critiqued deficit model.

Hoping that those engaging with genomics services will is zithromax good for sinus have acquired the confidence, knowledge and skills to equitably participate through a wider diffusion of public understanding of genomics and/or a commitment to self-education is, at best, a sticking plaster. More creative dialogical strategies for developing public engagement around genomics are still very much required (Samuel and Farsides 2018).Participants were keen to use the groups, and their writing, as an opportunity to craft narratives and representations that resisted and challenged what they frequently felt was expected (and indeed, imposed on them) by institutionsâwhether the wider genomics âindustryâ, or even patient support groups. As such, participants were aware of particular types of writing that would be well received and seen to have is zithromax good for sinus extrinsic value, but struggled to square that with the way in which they wanted to tell their own stories and reflect those of their children.Weâre thinking more about how our children are represented, and their awareness of themselves. Itâs that thing that âthis child is disabled and theyâve had a horrible life and theyâre so sick and blah-blah-blahâ, and then people give you funding â¦ And Iâve had conversations with [charity] about it before because theyâd written something for a funding bid and it said âa lot of these children will dieâ, and I thought, âDo you really need to say that?.

Â, and they were like, âYeah, because thatâs what gets peopleâ¦â. But when youâre thinking about your child and is zithromax good for sinus how you want the world to view them and how you want them to view themselves, itâs kind of a different thing I guess.Thus, many of the pieces of writing that participants created aimed to tell positive stories, ânormalâ stories, that resisted medicalisation and politicisation, even casting it to the margins, such as in âMy Magical Girlâ (figure 4). As one participant noted, âone of the things I really liked, one of the reasons that I write is to share the good stuff that happensâ. Intertwined with this, we can witness how participants are keen to reclaim and recentre certain aspects of their identities is zithromax good for sinus which perhaps they do not get the opportunity to voice in other (particularly, medical) contexts.

As one participant reflected on their writing. ÂI think there is that bit of still being a mum and not being a carer or a medical secretaryâ. Parents of children with rare genetic conditions are often implicitly expected to become âexpert caregiversââsomething which healthcare systems rely on, though simultaneously struggle to acknowledge (Baumbusch, is zithromax good for sinus Mayer, and Sloan-Yip 2018).âMy Magical Girlââa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 4 âMy Magical Girlââa piece of writing from one of our writing groups.Similarly, another participant reflecting on the writing groups explained:We did a narrative piece that Iâm just looking at now and I think that does what I like to do, which is just show some of the normal stuff around living with someone with a rare condition. Just trying to show that we do have a normal life and just showing that we do have things in common with other people, we do have things we can talk about and if you come and talk to us or read our writing, it doesnât have to be about genetics!.

Weâve got other things that are in our lives and are important to us.At first glance, some of the written excerpts appeared to describe aspects of life quite mundane and unremarkable. However, when read through the context of rare genetic is zithromax good for sinus conditions, these pieces can draw attention to how such multiple aspects of everyday life are reconfigured and challenged. Indeed, one participant reflected that, âI donât think I wrote particularly much about her condition per se, but then I think things leak out in whatever youâre writing aboutâ. While another noted how âno matter what we write about, you can always feel that parenting is zithromax good for sinus concern in the back of your mind.

Yet, many of these pieces of writing, even when not directly or explicitly mentioning rare disease, carried messages and themes that other participants took to be particularly meaningful when interpreted through their own lived experience of rare genetic conditions, such as âThe Blanketâ (figure 6).'The Blanket'âa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 6 'The Blanket'âa piece of writing from one of our writing groups.The Blanket was amazing because it was that kind of completionist idea, the idea that the caring and dealing with the genetic odyssey is a never-ending saga and so you never get to complete anything because youâve got to do it again from scratch tomorrow. The blanket more than anything else kind is zithromax good for sinus of touched me. Itâs the one I really took away with me.Writing in this way gave participants scope and freedom to tell stories that they feltâas one participant describedââcould only happen by metaphorâ. It provided a way to represent aspects is zithromax good for sinus of their lives and experiences that exceeded what could be conveyed in oral recollections and explanations.

The blank page and freedom to write about anything was an important way of creating a space where people felt comfortable to explore different narratives, centre different identities and challenge assumptions about life with rare conditions. As one participant explained:I was a bit worried that at the beginning, we would be invited to delve into points in our story that we felt were pivotal or particularly strong memories. And I is zithromax good for sinus was very glad that [the facilitator] didn't do that. She was very careful to say, this could be any of your experiences, write about any of it.

And then, of course, you can choose how far you tip-toe into that or not. And that was good.With this in mind, we want to briefly turn our attention is zithromax good for sinus to reflecting on the value that writing has had here, as a qualitative method, and how it has allowed us as researchers to explore the lifeworlds of families touched by genetic conditions.Reflecting on the value of participatory-writing for social researchParticipatory-writing has enabled us to learn about many of the things that mattered to our participants. It has given us an insight into their everyday lives. The complexities, the challenges, is zithromax good for sinus the frustrations.

Writing (and the interlinked processes of sharing and reading) has allowed our participants to voice their narratives and representations in ways that they found to be important and authentic.The written pieces that were createdâwhether poem or proseâhave been immensely evocative. We have included as many as possible, and in full. Particularly as, to quote Frank (2012, 36), âeach story must is zithromax good for sinus be considered as a whole. Methods that fragment stories serve other purposesâ.

Herein lies one of the challenges of participatory-writing, in is zithromax good for sinus that what is produced does not lend itself well to the demands and constraints of academic publishing!. Though we hope to also demonstrate what is achievable even when time is short. One of the largest challenges of the method that we and our participants reflected on were discussions around privacy and confidentiality.Thereâs a lot of stuff now that I have to be so careful, because of protecting the kidsâ privacy. Thereâs stuff Iâd like to talk about because it affects me, some of the conversations that weâve had to have, I canât put those anywhere and itâs not that I want to necessarily share that as such, itâs a difficult one in that sometimes it is just cathartic to get it out and write it out but then Iâm always is zithromax good for sinus mindful, who is reading this?.

How can this come back in the future?. How would that get back?. How is zithromax good for sinus would I feel if my kids, how would they feel if this was out there?. Writing brings with it a greater sense of permeance and mobility.

It produces a record in ways different to is zithromax good for sinus that of conversation. In our research, we always ensured that people felt comfortable to not share what they had writtenâand indeed, some people did not. Throughout the process we stressed the optional nature and modular approach to sharing, allowing people to choose what was shared with us as researchers, what was shared within the group, and whatâif anythingâcould be shared more widely, for example, the pieces of writing featured in this publication. Participants assessed this issue on a piece-by-piece basis and knew that we as researchers wanted them to retain full control over everything they had written.It was encouraging is zithromax good for sinus that participants reflected on how writing had, as a method, both encouraged and enabled them to detail aspects of their experience that might not have come to the fore had we relied solely on oral interviews.

Writing, as one of our participants described, âreally threw a light on those things that itâs really hard to explain under other circumstancesâ. Another participant described noticing that the written medium had encouraged them to âdig a little bit moreâ into their feelings:[You] can twiddle with it, so like we might come out of this meeting now and I might think, âoh god, I wish Iâd said thatâ. Whereas if youâve got a is zithromax good for sinus week or so to actually play with it and add or take away from it or whatever, because sometimes you write something and itâs done, but then you start typing it up and youâll just rephrase it in a different way. So, thereâs that time to actually consider it.The opportunity to creatively use metaphors, write-between-the-lines, and crucially, take the time to craft and edit narratives gave our participants the opportunity to consider how they responded, and to convey what they felt was an added level of detail.

For some, it was particularly the opportunities that writing offered to make these narratives âmore lively and interestingâ is zithromax good for sinus that was appealing. This liveliness is particularly important if we take seriously Vanniniâs claims that social research ought to consider the âunique and novel ways it can reverberate with people, what social change or intellectual fascination it can inspire, what impressions it can animate, what surprises it can generate, what expectations it can violate, what new stories it can generateâ(Vannini 2015, 12). This involves recognising the performative quality of words themselves and the intersubjective means by which knowledge is co-created by writer and reader (Anderson 2014), a shift from aiming to explain how something might âfeelâ to instead attempting to expressively evoke how something might âfeelâ.Writing in this way has thus been a valuable method for us. But it is zithromax good for sinus was also an approach which our participants valued and embraced.

Weâdâperhaps naivelyâinitiated this research in the hopes of producing material that would be engaging and informative to healthcare professionals, however, it quickly became apparent that reading other peopleâs writing was powerful and rewarding for is zithromax good for sinus other families affected by rare conditions too.I think being able to connect to what other people were saying. I know there was a piece in particular that [participant] wrote, and I felt like that could have been something that I actually could have written myself. The language that she used, the situation that it was about, it was definitely something that I thought, âWow thatâs my life, I could have written that.â That was quite strange actually, it was nice though.This overlapped with what participants felt to be another strand of value in writing about their experiences. Being heard.Thereâs just something about knowing is zithromax good for sinus that people are listening and actually giving you a really nice way to talk about things.

Itâs as far away from medicalised as you can get, isnât it, just doing creative writing.The creativity of the medium, and its differentiation from the language and communication styles associated with more clinical discourse became something that in itself had a generative potential. Participants felt enabled to claim an ownership and validity to their representations of experiences is zithromax good for sinus . The written form had an authority and level of definition that empowered people to write about the more-than-medical realities that constitute life with rare genetic conditions. It provided an important outlet for people to voice their narrativesâoften stories that they felt had no place or might even undermine their expertise.

As one participant commented, is zithromax good for sinus ânobody asks me this stuffâ. Another described how,I think people see you swan-like gliding along, having these silly ideas about how easy youâre making it look. They donât see any of all of the bits that are going on behind it and writing about nappies and children being resuscitated and all of that kind of thing. I suppose I feel it allows me to tell people what itâs really like.Again, it emphasises the value of taking an everyday approach, and considering what is âleft overâ (Lefebvre 1991), what exceeds or escapes more formalised representations of life with rare conditions, and what is absent from is zithromax good for sinus the genomic imaginaries and promissory discourses that are created and mobilised at a political level.ConclusionIn the spirit of dialogical narrative analysis, our aim has never been to âsummarise our findingsâ, but ârather to open continuing possibilities of listening and of responding to what is heardâ (Frank 2012, 36).

Stories are integral to medical care, as Nicholas and Gillett (1997, 296) argue, âin its representation of subjective experience, narrative gives us access to the perceptions and valuation of other human beings, and thus narrative bioethics is a means of thinking about the meaning of illness in the life of a patient and about the role of the physician in the patient-physician interactionâ. The stories is zithromax good for sinus produced through our writing groups provide a window into the worlds of genomic medicine, the worlds outside of the clinic. They are powerful, and exist as a reminder of the wider context in which families affected by rare disease are operatingâthe structural, social, administrative and bureaucratic challenges which must be navigated. Challenges that are compounded by one another.

But also, is zithromax good for sinus the joys, the normality, the forgettability, the not-quite-all-consuming nature of rare conditions, and the opportunities that families find to resist a wholescale medicalisation or pathologisation of life. These stories do not provide answers or solutions. Instead, their value lies in helping to unfold the implications of experiences and illuminating what is often submerged or eclipsed by wider sociotechnical frames (Morris 2001). As Featherstone et is zithromax good for sinus al.

(2006, 149) argue âit is vital for researchers and practitioners alike to ground their work in an understanding of everyday family practices that is sensitive to their complexitiesâ.We know that stories have lives, that stories travel, that stories remain memorable (Parr 2021). We hope that the excerpts we have showcased here, along with those that is zithromax good for sinus will be published elsewhere, might prompt greater understanding of the lived experiences of families whose lives have become entwined with the genomics agenda. Narratives can serve as a reminder of how medical practices are experienced by patients, but also how medical encounters are situated within, against and alongside everything else that happens in peopleâs lives (Nicholas and Gillett 1997). As Morris (2001, 55) has described, this is not a practice of thinking about stories, but rather a process of thinking with stories, âallowing narrative to work on usâ.Data availability statementNo data are available.

Due to the highly personal, sensitive and is zithromax good for sinus emotional nature of the qualitative data generated, and in order to respect participantâs preferences and consent, at this stage data is not being made publicly available beyond what has been published in this article. Interested parties are welcome to contact the corresponding author for further details.Ethics statementsPatient consent for publicationNot applicable.Ethics approvalThis study involves human participants. This project and other elements of the authors' research were granted ethical and research governance approval by The Brighton and Sussex Medical School Research Governance and Ethics Committee (ER/BSMS9KQM/2). Participants gave informed consent to participate in the study is zithromax good for sinus before taking part.AcknowledgmentsThe authors thank the peer reviewers and editors, who provided deep engagement with their work and for the generosity, kindness and openness towards this manuscript.Notes1.

There is a long tradition of using stories, narratives and writing as a way to prompt healthcare professionals to reflect on medical ethics (Jones 1999. Nelson 1997) is zithromax good for sinus . This often takes literary sources as a starting point, though there is a growing interest in gathering stories from much more diverse places. For example, Gualtieri and Akhtar (2013) describe how blogs written by patients can offer insights and rich narratives, and provide a means to reflect on the psychosocial and emotional consequences of chronic disease.

Using âfoundâ material in this way however can create complexities around consent (Hookway 2008) and thus there are opportunities to think about more equitable and participatory ways of researching and writing with participants.2. RG has lived experience of a rare genetic condition themselves. The decision for RG to be present was discussed with potential participants who suggested they would be keen for them to be there..

IntroductionTracing the implications of developments within zithromax 500mg price genetic science has become a major area of research and debate within medical sociology and allied disciplines (Martin and Dingwall 2010). Sociologists and bioethicists have long argued that technological developments are leading to an increasing âgeneticisationâ of many aspects of health and healthcare (Lippman 1991). This can particularly be seen in the establishment zithromax 500mg price and adoption of a âgenomics agendaâ within public health institutions (Mwale and Farsides 2021). Genomics involves the study of all of a personâs genes (the genome) and how genes interact with each other and the environment. The expansion of this area of medicine has been made possible by technological development, economic investment and the application of political capital.

Going beyond the individual gene offers new diagnostic and treatment possibilitiesâparticularly for complex and rare zithromax 500mg price conditions.Alongside these clinical opportunities, there are substantial social implications. As Martin and Dingwall (2010, 514) have noted, one of the distinguishing features of genetics (and now, genomics) is its promissory discourse which relies on a mobilisation of âhigh expectations and social anxietiesâ. Such can involve a reconfiguring of expectations, zithromax 500mg price hopes and fears about the future (Martin and Dingwall 2010). As Parker (2012) argues, ethical problems within genetics emerge against, and need to be understood in the context of, a rich background of complex but largely day-to-day practice. This is also true for the experiences of those engaging with genomics as patients or carers.

An engagement with genomics is always mediated through, and zithromax 500mg price interpreted against, peoplesâ own lived (and everyday) experience (Featherstone et al. 2006).Understanding the perspectives of those who engage with genomic medicine services is (or, should be) an important facet of social scientific enquiry. Particularly, as previous research has suggested that patientsâ expectations and assumptions about ethical practice may not always be the same as those of healthcare professionals (Dheensa, Fenwick, and Lucassen 2016). However, as zithromax 500mg price Lewis et al. (2020) note, there are relatively few qualitative studies that explore the perspectives of parents who have been offered genomic sequencing to diagnose their childâs rare conditions in the UK.

As a result, we are less aware of how families see the impact zithromax 500mg price on their lives of the positive imagined futures presented by scientists, clinicians and policy makers. We might also be prone to reducing the experience of families down to that of travellers on the âdiagnostic odysseyâ so often referred to in literature (Rosell et al. 2016). Our research aims to collate rich accounts of lived experience in order to make visible the diverse, variable and multilayered everyday lives of patients and families and how these correspond with emerging, rapidly changing, and complex fields such zithromax 500mg price as genomic medicine. While the application of genomic technologies has the potential to transform patients' lives, the excitement (or, âgenohypeâ (Kakuk 2006)) around these technologies mustn't eclipse the everyday experiences of the people who live with, and care for, those with genetic conditions.

As Kerr et al. (2021) have argued, these promissory claims are fragile and contested, particularly when set against everyday encounters.Dealing with the uncertainty that the advent and subsequent mainstreaming of clinical genomics brings requires working in a way that empowers âvoices at the margins so that they may help craft creative options and [create] opportunities for collective consensual decision-making that are respectful of differenceâ (Baylis 2019, zithromax 500mg price 175). This involves finding ways to speak âwithâ rather than âforâ, creating a way for the ideas and interests of stakeholder communities to rise to the fore, and hence, our interest in participatory-writing.Writing worldsWriting, as we see it, belongs at the heart of social research. It is zithromax 500mg price part of research. A research method in its own right.

A means of enquiry, exploration and articulation. (Phillips and Kara (2021, 8)Finding ways to understand, evoke and (re)present the experiences zithromax 500mg price of research participants is at the heart of social scientific inquiry. Methodological plurality and creativity is increasingly celebrated as allowing for more nuanced perspectives, different modalities of knowledge and more participatory approaches to doing research with (as opposed to simply, on) participants (DeLyser and Sui 2014). The challenge, as described by Deacon (2000) is to âfind ways to make living systems actually come aliveâ. Given that âsocial researchers work with participants to explore their zithromax 500mg price experiences and perspectives in their own wordsâ (Phillips and Kara 2021, 105) there are opportunities to think more creatively about how we come to elicit, produce and obtain these words.

Written words, not just spoken.As Richardson (2000, 923) argues âwriting is also a way of 'knowing'âa method of discovery and analysisâ. Explorations of zithromax 500mg price using writing as a mode of inquiry have seen experimentation with different written forms (Eshun and Madge 2012. Lorimer 2018. Phillips and Kara 2021) as well as autobiographical accounts in the style of autoethnographic methods (Bochner and Ellis 2002). However, as Elizabeth (2008, 4) notes, such a use of autobiographical writing as a method remains underused and is âis largely confined to those zithromax 500mg price sociologists who choose to write personally.

Participants are rarely granted a similar opportunityâ. Certainly, many such examples can be found of this style of academic writing, and obviously, this is not to downplay their contributions and insights, but to draw attention to zithromax 500mg price the potential ways in which such methods can be extended to engage with the knowledges of participants. There is perhaps something troubling about the way that âwritingâ is something retained as the privileged territory of the researcher.Participatory methods have been invoked to great success across a diverse range of settings. Participatory drawing (Literat 2013), participatory photography (Prins 2010), participatory video (Kindon 2003) to name just a few. Yet there zithromax 500mg price appears to remain a hesitancy to extending these principles of participation to that staple of research.

Writing. Many of the benefits that have been identified as resulting from social researchers using writing as method (Phillips and Kara 2021. Richardson and St zithromax 500mg price. Pierre 2018) can also equally arrive from enabling those we research with to contribute illuminating understandings through the processual experience of writing. For example, in zithromax 500mg price writing about writing as a method of inquiry, Richardson and St.

Pierre (2018, 1428) emphasis original) reflect on the benefits of how âthought happened in the writingâ. Similarly, Phillips and Kara (2021, 17) explain how âwriting can help us to explore experiences and identify and express emotionsâ. Of course, such a generation of new ideas, understandings and connections through writing is not limited to zithromax 500mg price those doing research, but extends to all those who might embrace and engage in the exploratory and expressive acts and processes emerging from an engagement in writing.Asking participants to write is not an unusual method in and of itself. It is the core thing that we ask people to do when we send them qualitative questionnaires and include room for open-ended responses in our surveys. Diary methods have a rich history as an enlightening form of empirical investigation, capable of offering insights into everyday life (Latham 2003).

The Mass Observation zithromax 500mg price Project and Archive similarly relies on participants becoming diarists and writers, responding in a written form and recording their experiences and thoughts (McGlacken and Hobson-West 2022. Smart 2011). Yet, despite such utilisations of inscription, zithromax 500mg price there still remains something of a sense of impropriety to the notion that research participants may write, rather than speakâone in conflict with, and challenging to, the privileged place which interviewing occupies within qualitative inquiry (Elizabeth 2008). In describing the Mass Observation Project, Smart (2011, 541) describes how, until more recently, sociological engagement with the written narratives produced through the Mass Observation Project has been limited âbecause the free way in which they wrote was not regarded as sufficiently rigorous for sociological analysisâ. Attitudes have since changed however, to recognise the richness and depth of the narratives that many Mass Observation panellists produce (Smart 2011).There are substantial benefits in asking participants to write about their lives (Elizabeth 2008).

Using writing as zithromax 500mg price a method of inquiry raises the possibility for âproducing different knowledge and producing knowledge differentlyâ (St. Pierre 1997, 175). Writing creates a very different zithromax 500mg price modality of representation. It allows research participants to âgive the researcher their stories and words in an exact formâ (Deacon 2000). As Penn (2001, 50, emphasis original) argues, to write is an act of agency.

Âwhen we zithromax 500mg price write we are no longer being done to. We are doingâ. This can be a particularly important mechanism of representation for certain groups and narratives, particularly if writing about events where agency may have been lacking for the author. Writing thus provides a way of transferring zithromax 500mg price a level of control and ownership to participants âin a way that traditional interviews cannotâ (Burtt 2020, 7). This could simply be about enabling participants to take the time to narrate their experiences in their own terms.

This âgiving timeâ may be at odds with some forms of zithromax 500mg price social science that prioritise and privilege the immediacy and synchronicity of the research interview as a strategy for overcoming anxieties about âpremeditationâ. Yet for some topics and participants, the opportunity to respond carefully and thoughtfully allows a more sensitive immersion in research. Participants can spend as long as they need to complete their written reflections, considering carefully their responses in an atmosphere less structured by the pressures of direct questioning (Burtt 2020). Participatory-writing can zithromax 500mg price provide windows on subjects that would otherwise be hard to reach by virtue of their personal or sensitive nature (Phillips and Kara 2021). Writing can afford a level of safety in providing space, time and privacy to consider the framing and language in which disclosures and stories are told, navigating and articulating vulnerability and uncertainty.

Participants are able to craft their voice. Such crafting may again be challenged by those concerned about the risks to the generation of âtruthfulnessâ, though to assume that only through the imposition of questions on zithromax 500mg price the spot during interviews are authentic and authorative accounts produced is flawed. To quote Elizabeth (2008, 14):Writing provides researchers with access to the unique, partial and situated perspectives of our participants. We gain insight into the discourses that circulate in their social milieu and the way in which these vie for our participants' subjectivities.Writing can enable people to overcome the effects of zithromax 500mg price self-censorship, allowing self-revelatory forms of expression (Elizabeth 2008). While oral research methods are often based on the dialogue between interviewer and interviewee, writing tasks, as Elizabeth (2008) describes, can put past and present selves into dialogue with each other.

Writing brings a level of flexibility that can aid progression beyond fixed questions and rigid categories and vocabularies introduced by the researcher, participants can employ their own concepts and terminology, and even, to certain extents, define the questions they wish to ask and answer (Burtt 2020). Similarly, participatory-writing as a method is zithromax 500mg price less influenced by the mediating effects of the interviewer (or other focus-group participants). Interjections, perceived cues, puzzled looks or requests to know that oneâs narrative is making sense (Burtt 2020. Elizabeth 2008).This is not to claim that writing produces accounts that can be universally representative or the source for generalisations about the social world, rather the impact and intention of writing as a method is to be illustrative (Evans 2021. Phillips and zithromax 500mg price Kara 2021).

By collating multiple autobiographical accounts from participants with a shared connection, social researchers are left with a âmethod through which we might investigate that more conventional social space of the collectiveâ (Evans 2021, 14). This in itself allows for the inclusion of multiple âvoicesâ within the final written product of research, giving a platform to participants that has the potential to be less directly mediated and subject to academic meddling.This is not to position writing as an epistemologically âbetterâ method of inquiry than more conventional zithromax 500mg price oral research practices, but rather to recognise that writing can allow the production of very different kinds of personal revelations from participants than what may be forthcoming when spoken. That creative or autobiographical written accounts may result in omissions and imperfect interpretations of the self is well recognised (Evans 2021), but such critiques can likewise be applied to the majority of social research methods. The point is to understand how different methods can allow different facets of life and self to arise to the fore. Like all methods, participatory-writing has its time and zithromax 500mg price place (Phillips and Kara 2021).

Elizabeth (2008) suggests that there is great value in using writing exercises in conjunction with interview or focus group discussions.While embracing the ways that participantsâ âcrafted written work stands to provide eloquent answers to research questions and speak to research interests from original anglesâ (Phillips and Kara 2021, 114) it is also important to remember that often the additional product of participatory-writing research are the conversations and reflections that occur along the way. Indeed, it is the practice and process of participating that can matter the most, rather than the outputs of words on a pageâas useful and illuminating as they may be (Phillips and Kara 2021). The ethical bargain struck with participants may mean that on occasion the primary product (writing) is never seen nor shared, only the experience of producing it.While social science may not have a zithromax 500mg price long tradition of encouraging participants themselves to write as a mode of inquiry, as part of the rise of expressive and arts-based therapies there has been a renewed attention to writing as a therapeutic technique (Elizabeth 2008. Pennebaker and Chung 2007. Peterkin and zithromax 500mg price Prettyman 2009.

Robinson 2000). There are numerous studies that explore forms of expressive writing as a means for coping with a variety of situations (Bolton 2008. Gebler and Maercker 2007), yet few studies that take up Richardson (2000) challenge of using writing as a way of inquiring, understanding and âknowingâ more about such experiencesâparticularly in a fully participatory vein (though zithromax 500mg price see Phillips and Kara (2021) for an insightful volume that catalogues recent efforts to do just this). It is perhaps such codings of writing as having âtherapeuticâ applications which has stifled experimentation by qualitative researchers. Similarly, the assumption that writing exercises have a therapeutic component (by design, intention or as a predictable but zithromax 500mg price unintended side effect) may make ethics committees cautious in their policing of such methods.

Though again, the âresearch interviewâ is often structured by, and experienced as, a confessional (Crowe 1998) and therapeutic opportunity (Birch and Miller 2000).Of course, the open-endedness of writing presents challenges as well as opportunities (Phillips and Kara 2021). As Phillips and Kara (2021, 76) recognise, we write âwithin the means available to usâ, with dominant discourses often infiating work that hopes to be creative, searching and illuminating, becoming more conventional or hegemonic. Writing obviously has the potential to be an exclusionary activity, with the possibilities for participation influenced by zithromax 500mg price numerous factors such as class, gender, health and cultural differences, alongside past educational experiences, language fluency, habit, practice and even time available. Participation can be challenging and uncomfortable, and may be prefigured by pre-existing attitudes and aptitudes to the written formâand the sharing thereof. As Phillips et al.

(2021, 54) poignantly note, zithromax 500mg price âcreative writing is not for everyone, all of the timeâ. Rather than acting as a participatory method, instituting writing as the method by which people take part in research can deter participation (Phillips and Kara 2021). However, McMillan and McNicol (2021, 86) suggest rather than an imposition of what writing should be, there are ways of working that can zithromax 500mg price allow âa communityâs existing ways of writing and knowing to come throughâ. Such can involve cultivating a sense of inclusion, safety and trust among participants (Phillips et al. 2021)âmany of the core values of qualitative research at large, around building rapport and relationships are particularly applicable to using writing as a method of participatory inquiry.It is important to bear in mind that writing is directly affected by the nature of the intended audience, and particularly the levels to which any audience may be imagined to have been conferred with evaluative powers (Elizabeth 2008).

Similarly, and as with any form of qualitative research, accounts produced through writing are shaped by the possibilities and desires for levels zithromax 500mg price of anonymity for the authors involved. Further, we must recognise that writing fixes wordsâand as Elizabeth (2008) notes, hence also fixing constructions of selves and narratives. Though given that most interview research involves a subsequent transcription to an often equally fixed written form, this is perhaps not too dissimilar. Indeed, the opportunity zithromax 500mg price for a level of editorial oversight of oneâs own words and stories is one of the benefits brought about through participatory-writing. However, while writing as a mode of inquiry can be less intrusive and less pressurised, especially when taking place in the writerâs own time and space, this also means there are also fewer opportunities for researchers to provide emotional support, reassurance or to steer questioning away from distressing topics (Burtt 2020).

There are thus complex ethical considerations prior to asking participants to write, to sit and mediate on a topic, in ways thatâthough possibly enjoyable, comforting and self-revelatory, can also zithromax 500mg price be frustrating and saddening (Elizabeth 2008. Phillips and Kara 2021).As well as affecting those doing the writing, writing also has the potential to affect readers in ways that formal academic writing cannot (Phillips and Kara 2021). Participantsâ writings can be well suited to disseminating research, particularly as the expressive nature of a participantâs writing can be seen to be âevokingâ emotion rather than just âexplainingâ emotion. Showing rather zithromax 500mg price than telling (Andrews 2018). Participant-produced stories have an âenliveningâ quality, and can have a valuable role to play as communicative resources, buildingâand bridgingâempathy (Parr 2021).

Parr's work in particular demonstrates how stories can lead to changes in behaviours and styles of engagement within professional communities (Parr 2021).1Participatory-writing with people affected by rare genetic conditionsThis research is part of a larger participatory study working creatively and collaboratively with families touched by genetic conditions to explore the experiences of patients and participants in genomic medicine and research. Our aim is to identify the overlaps and gaps between practitioner and patient accounts of ethically relevant issues as they occur in clinical genomics and find ways of zithromax 500mg price supporting people to feel more comfortable when having challenging conversations. Our principal research question is whether accounts of patient experience might contribute to the preparedness of clinicians to deal with the ethical challenges of genomics practice.It was this ambitious research question that piqued our interest in participatory writing, with the hope that such narratives might express and evoke aspects of lived experience in productive and affective ways, beyond what was possible through more conventional social-scientific registers and/or participatory practices of âpatient engagementâ. As Frank zithromax 500mg price (2012) notes, equipping healthcare professionals with a sense of âwhat to listen forâ can enhance âprofessional listeningâ.Co-production is at the heart of the research project. Our research is directly informed and guided by people with lived experience.

We have a participatory steering group who attend project meetings, share their ideas and experiences, and contribute and comment on the design of research activities. This has allowed us to develop relationships with participants, build trust and confidence, and demonstrate our commitment to confidentiality, giving people a voice, and zithromax 500mg price effecting change. Thus, we see âpatient and public involvementâ as a constant and continual process, rather than an initial involvement at the outset of the project. Our research involves continued dialogue and input from people with lived experience of genomics and the active enrolment of zithromax 500mg price their expertise, feedback and insights into the design of this projectâin all its extents, including research questions, methodology, recruitment and dissemination. Our participants have acted as peer-researchers and had oversight of the writing of this article.Conversations with members of this steering group indicated an interest in, and encouragement to, explore ways of researching using arts-based methods.

Working with an author and life-writing tutor, we designed a participatory-writing programme that would encompass an hour-long online facilitated workshop on a weekly basis for 6âweeks. We were conscious of accommodating the availability of people with often complex caring responsibilities (particularly during buy antibiotics) zithromax 500mg price. Finding a mutually acceptable time to run the writing group was one of the largest challenges, although the extent to which individual participants committed to attending despite, and alongside, their commitments of caring and work (exacerbated by buy antibiotics lockdowns) gave some insight into how much potential value people saw in this work. Aware of the online and disembodied nature of the groups, we sent participants a small âcare packageâ of stationery ahead of the meetings to show our appreciation and to help build a sense of occasion. We were aware that through writing (and reading othersâ stories), people would be brushing up zithromax 500mg price against personal and emotional topics, which could cause, or even reveal, a level of upset and anxiety.

Our aim was that the writing groups might exist as a âsafe spaceâ to explore these narratives. However, while we had hoped participants would find being involved in zithromax 500mg price our research empowering and cathartic, we were keen to stress that our research activities did not constitute a form of âart therapyâ. In preparing for the possibility of distress, we appointed a colleague (external to the project) with extensive pastoral experience who could be called on to support participants (and researchers) should the experience become challenging.Initially, we recruited participants through our existing networks and relationships. A âpurposive samplingâ technique (Sarantakos 2012) with our aim being ânot to choose a representative sample, rather to select an illustrative oneâ (Valentine 1997, 112). These were people who served as âpatient representativesâ on ethical and governance panels relating to genomics or who were active in patient led organisations zithromax 500mg price.

These were people whose voices and expertise had already been sought out in different fora. Through a level of âsnowballingâ, these initial participants made suggestions for others within their advocacy networks and patient communities who they felt could contribute toâand enjoy taking part inâour research. The participant group was mixed in gender, though with a larger number of women, and ages ranging from mid-30s to early zithromax 500mg price 50s. All of our participants had direct experience of genetic disease within their families, with many having a significant level of caring responsibility as a result. Our participants had experience of participating in large zithromax 500mg price genomic medicine projects, such as the 100â000 Genomes Project and/or the Deciphering Developmental Disorders Study.

Many of the participants we were working with had an active blogging practice, and were keen to take part in research in a way that made use of their skills, interests and communicative strengthsâbut also to get something out of the research themselves, in learning new ways to hone their writing practice. Others took a little more convincing, and were particularly hesitant about how doing some writing could be scientifically productive or of value.Week by week, each session involved our professional writing tutor introducing different creative writing exercises, designed to enable both novice and experienced writers to begin to express ideas and thoughts with greater fluency. This included being introduced to, and trying out, techniques such as free-writing, narrative-distancing and writing in response zithromax 500mg price to a given prompt (such as telling the story of a cherished object). At the end of each session, participants were given a creative exercise to tackle in their own time. During the introduction and after each in-session activity participants were invited to reflect directly on their experience and the content of their writing.

Participants were invited, but never pressured, zithromax 500mg price to share their writing with the group by reading a short excerpt. Discussion was guided by the facilitator to focus on the experience of the process of writing, and to prompt the group to notice any thematic similarities or differences in written accounts. The emphasis throughout was on building confidence in expressing lived experience.Our first writing groupâwho affectionately became known as the âThursday Writersââconsisted of five participants, alongside the life-writing tutor, and the first author (RG), who took a participatory role in the group, zithromax 500mg price rather than solely an observational one.2 Our intent was that participants would read extracts from their writing, and hopefully share it with the research team. However, participants were quickly very vocal about wanting to share their outputs in full among the other members of the group too, and we created a secure online space where people could upload what they had written in the sessions or as part of the âhomeworkâ. Some participants chose to use word processors, others uploaded photos of their handwritten pages.

Reflecting on the impact of reading other zithromax 500mg price peopleâs writing and noting points of connection became a regular feature of discussions (a point we will return to later on).Our âThursday Writersâ were hugely supportive of the participatory-writing programme, and several participants supported us to recruit for a second 6-week programme with an additional seven participants (which also ended up running on a Thursday). All of the writing group sessions were recorded, with participantsâ consent, which has allowed us to revisit and reflect on the types of narratives that were created and shared, alongside those which were uploaded to a âsharing folderâ (one for each groupâit was key that the âsafe spaceâ created for sharing writing was limited to the people who were in the online sessions together). Participants also consented to their written pieces being used in publications, a question which was revisited in the drafting of this article.After each 6-week programme, we arranged reflective interviews with participants, giving everyone an opportunity to share their thoughts and experiences regarding participating in the zithromax 500mg price writing groups. The written pieces that participants had produced throughout the course also served as an elicitory device during these conversations (Bagnoli 2009), allowing us to delve further into the context, meaning and emotions surrounding the participantâs writing, as well as asking them to reflect on what the piece represented or evoked that may be outside of view to others.We have specifically chosen not to attribute interview quotes nor written pieces to individuals. This is to aid confidentiality, which was an important theme for participants (see later discussion).

While we could zithromax 500mg price have chosen to use pseudonyms or participant codes, these can be reductive. Through not attributing quotes or pieces of writing to individuals, we are able to demonstrate commonalities across different and diverse rare genetic conditions.Engaging with the written pieces produced through participatory-writing involved paying close attention to the stories (and, processes of storying) that were written, aiming to better understand their impact and significance (Phillips et al. 2021). For us, this involved drawing on aspects of dialogical narrative analysis (DNA) (Frank 2010, zithromax 500mg price 2012). Such an analytical approach involves questioning:What is the storytellerâs art, through which she or he represents life in the form of a story?.

And what form of life is reflected in such a representation, including the resources to tell particular kinds of stories, affinities with those who will listen to and understand such stories, vulnerabilities including not being able to tell an adequate story, and contests, including which version of a story zithromax 500mg price trumps which other versions?. (Frank 2012, 33).DNA involves understanding stories as artful representations of lives. It involves considering why someone might choose to tell such a story and exploring how identities are being formed and sustained by the storying process. DNAâs concern is how to speak with a research participant rather than about them, and show what zithromax 500mg price is at stake in a story as a form of response. A central premise of DNA is that it does not seek to interpret stories or âdiscover truthsâ that have âescaped the attention of the storytellersâ (Frank 2012), rather the intent is to witness stories, and enable voices to be both heard and evocativeâoften through positioning them into dialogue with other, but similar, diffuse voices.

Thus, the purpose of a dialogical narrative analysis is not to âdisplay mastery over the story, but rather to expand the listenerâs openness to how much the story is sayingâ (Frank 2010, 88).Writing everyday storiesSimilarly to Phillips et al. (2021), our zithromax 500mg price approach was not to extract stories from our participants, but enable them to recount the stories that were of importance to them. Although we were interested in the dawn of genomic medicine and the sociotechnical imaginaries involved (Mwale and Farsides 2021), we were also interested in what everyday life is like for the people who live with, and care for, those with genetic conditions, and how genomics acts to reconfigure (or, perhaps, does not) aspects of peopleâs lives outside of the clinic. As Prainsack, Schicktanz, and Werner-Felmayer (2014, 11) argue, genetics takes place âoutside of the clinic as well as within zithromax 500mg price. It takes place in families, patient groups, state organisations, on the Internet, and on the international marketâ.The phrase âeveryday lifeâ is often associated with the âordinary, routine and repetitive aspects of social life that are pervasive and yet frequently overlooked and taken-for-grantedâ (Pinder 2011, 223).

Finding significance in the everyday and respect for the âmundaneâ draws from a feminist commitment to understand the material conditions of peopleâs lived experience and practices (Hanson 1992). Attending to âeveryday lifeâ allows a focus on those practices and aspects of life that are hidden by dominant zithromax 500mg price narratives (Highmore 2002). An everyday perspective challenges privileging certain spaces, such as âthe clinicâ, as being the locus of how and where people experience genomic medicine, to instead explore that which exceeds these formalised encounters and overflows into other domains of life. For Lefebvre (1991, 97), everyday life is âwhat zithromax 500mg price is left overâ. Our participantsâ writing provided us with a viewpoint of those things which are âleft overâ from accounts of genomics.

It draws our attention to the way that geneticisation (Lippman 1991) and genohype (Kakuk 2006) infiate everyday life, but also how, frequently, at an everyday level, these new sociotechnical regimes may have little impact. With genomics being presented as a cornucopia and salve for all manner of health and social challenges, understanding âwhat is left overâ is an important effort in zithromax 500mg price making visible the inconspicuous aspects of living with rare genetic conditions. As Nicholas and Gillett (1997) argue, to begin to appreciate the bioethical issues at stake, we need to fill in the gaps that exist within our understanding, something which cannot be done without narrative insights. Similarly, reflecting on genetics practice at large, Featherstone et al. (2006, xii) zithromax 500mg price argue that âa sound appreciation of everyday social reality is of profound importance for professional practiceâ.

Thus, as Frank (2012, 36) notes, âto describe the world may be the most effective way to change itâ.Many of the pieces of writing that emerged from the groups touched on these sorts of everyday realities, and hidden complexities, of caring for people affected by rare genetic conditions.With âMy Day Beginsâ, I just sat down, and I was typing rather than writing freehand because Iâm faster. And yeah, there it was, and I hardly zithromax 500mg price had to change anything, after the first draft. I was really pleased with it, and you know I started off just trying to make it as factual as possible, as matter of fact as possible. And it wasnât until I shared it with other people that then they went âWhoaâ. And I zithromax 500mg price went âWhoa?.

Really?. This is life.â And I thought that was very interesting.As one of our participants commented, writing these sorts of creative pieces allowed them to draw attention to the complexities involved in careâpractical, emotional and identity-based complexities, not just medicalised complexities. As the author of zithromax 500mg price âMy Day Beginsâ (figure 1) notes,'My Day Begins'âa piece of writing from one of our writing groups. WAV, wheelchair accessible vehicle." data-icon-position data-hide-link-title="0">Figure 1 'My Day Begins'âa piece of writing from one of our writing groups. WAV, wheelchair accessible vehicle.Thereâs stuff in there about the complexity of caring for somebody, the practical complexities, and thereâs stuff about the zithromax 500mg price emotional complexity of being part of a wider family unit and still having to cope.

And thereâs this stuff in there about having to put aside your sense of self and be a parent or a carer. And I think a lot of people who don't have caring responsibilities would never think twice about that.Bury (1982, 169) noted how illness can result in âbiographical disruptionsâ, where âthe structures of everyday life and the forms of knowledge which underpin them are disruptedâ. Such was zithromax 500mg price certainly present in the written pieces that our participants produced. Though, rather than a singular disruption, years with no diagnosis, potential misdiagnoses and potentially having to adapt to receiving a diagnosis for a condition different to what had been expected (Dheensa, Lucassen, and Fenwick 2019), means that genomics follows multiple disruptions to both forms of knowledge and everyday life. Figure 2 exemplifies this.'Freewriting, Session #3'âa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 2 'Freewriting, Session #3'âa piece of writing from one of our writing groups.Yet even in writing these representations, participants were keen to hold attention to these acts as being specifically everyday.

They were aware and quite critical of the possibility zithromax 500mg price for acts of interpretation to render their writing as something very different. One participant described the challenge of eliciting empathetic responses, rather than just solely sympathetic responses.Sometimes I feel in this juxtaposition about not wanting to be personified as a superhero, because weâre not, we are just doing what the majority of parents would do if they had to do it, that is how it is.As a route to enabling the possibility of empathetic response, many of those who took part in the participatory-writing sessions commented how their pieces perhaps captured aspects of their lives that they felt were outside the view and understanding of medical professionals. The lack of alignment between families and healthcare professionals as to what ethical practice around genomics might mean and require (Dheensa, Fenwick, and Lucassen 2016) can be produced in part by this lack of visibility and knowledge about what is important and what is experienced on an everyday level.âThey [healthcare professionals] tend to have a close in zithromax 500mg price view of it rather than a birdâs eye view of it, in a way all of that stuff and stress is invisible.ââI think clinic doctors perhaps don't see anything like this side of things.ââIâve written quite a lot and I think other people have as well about how it feels to be a family with or without a diagnosis, rather than what the medics or what the team seems to think is important.âNoting things as being exterior to more commonplace comprehensions was not always presented as disenfranchisement or critique of healthcare professionals, but rather a way of drawing attention to the multiple forms of lived expertise that parents were called on to develop and mobilise. One piece, âWord Salad Counsellorâ (figure 3), in particular showcased how engagements with genomic medicine required patients and parents to develop new skills and knowledges, specifically in navigating the complex scientific languages through which clinicians enact and practice care.'Word Salad Counsellor'âa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 3 'Word Salad Counsellor'âa piece of writing from one of our writing groups.There is much to take away from figure 3. The use of humour to mask painful experiences.

The hyper zithromax 500mg price awareness of space and environment. The use of language, metaphors and similes. The lack of zithromax 500mg price attention to important personal information (e.g. Misgendering the child) in lieu of a focus on complex scientific information. The unfortunate use of the word âexcitingâ when attached to what is in fact bad news for this family.In particular, this tongue-in-cheek piece highlights how accessing genomic medicine services can require quickly learning scientific vocabulary in order to interpret clinical communications and be confident in understanding, participating and obtaining, optimum care.

The challenges of the technical language surrounding genomics (and health information in general) are well zithromax 500mg price established (Stuckey et al. 2015). The onus is frequently on the patient to acquire the expertise to interpret the information being providedâas described in the quote below from an interview with the author.Yeah, I mean itâs amplified but itâs not amplified by very much at all. I took zithromax 500mg price your worldâs worst plausible genetic counsellor and went from there. The surreal-ness of it actually comes from a lot of the stuff thatâs real in a way because I went back to it and thought which bits really chimed?.

Of course, itâs all the stuff like, âOh, yes, this is a known variant of not a great deal of zithromax 500mg price significance.â All those kinds of things. To most people it sounds like Douglas Adams but itâs not, itâs just what arrives in the letter. Okay, should I worry about this?. Do zithromax 500mg price I need to translate it before I worry about it?. What are we doing here?.

â¦ Iâve rapidly built on my A level biology knowledge which was already 30 years out of date. When I zithromax 500mg price learnt my genetics the human genome hadnât been sequenced so itâs all happened in my lifetime really and itâs been a bit of a helter-skelter. In a way youâve got to learn it â¦ itâs all delivered in closed codes and so in order to pick any of the useful information out of that youâve got to learn it quick.Although not the intended purpose of the writer, the original piece of writing and the follow-up discussion provide invaluable insight into the way theory and practice come together (or do not) in the clinic. The encounter highlights the centrality of what can be described as a âdiffusion modelâ (McNeil 2013) zithromax 500mg price of public engagement efforts around genomics. That is, the aspirations and follow on assumptions that groups will acquire scientific knowledge about new technologies via a âtrickling downâ or âosmosisâ of information.

This is slightly different fromâthough, entangled withâideas that suggest a âdeficit modelâ of public engagement, that takes as its starting point a deficiency in understanding that can be solved through more or better education (Marks 2016). A diffusion approach instead assumes that those encountering a zithromax 500mg price new technology will actively seek, access, comprehend and use related information. Institutionally, it is a passive (indeed, neoliberal) approach to public engagement that positions individuals as responsible for their own empowerment. In practice, the prevalence of a diffusion model of public engagement is potentially as equally problematic as the well-critiqued deficit model. Hoping that those engaging with genomics services will have acquired the confidence, knowledge and skills to equitably participate through a wider diffusion zithromax 500mg price of public understanding of genomics and/or a commitment to self-education is, at best, a sticking plaster.

More creative dialogical strategies for developing public engagement around genomics are still very much required (Samuel and Farsides 2018).Participants were keen to use the groups, and their writing, as an opportunity to craft narratives and representations that resisted and challenged what they frequently felt was expected (and indeed, imposed on them) by institutionsâwhether the wider genomics âindustryâ, or even patient support groups. As such, participants were aware of particular types of writing that would be well received and seen to have extrinsic value, but struggled to square that with the way in which they wanted to tell their own stories and reflect those of their children.Weâre thinking more about how our children are represented, and their awareness of zithromax 500mg price themselves. Itâs that thing that âthis child is disabled and theyâve had a horrible life and theyâre so sick and blah-blah-blahâ, and then people give you funding â¦ And Iâve had conversations with [charity] about it before because theyâd written something for a funding bid and it said âa lot of these children will dieâ, and I thought, âDo you really need to say that?. Â, and they were like, âYeah, because thatâs what gets peopleâ¦â. But when youâre zithromax 500mg price thinking about your child and how you want the world to view them and how you want them to view themselves, itâs kind of a different thing I guess.Thus, many of the pieces of writing that participants created aimed to tell positive stories, ânormalâ stories, that resisted medicalisation and politicisation, even casting it to the margins, such as in âMy Magical Girlâ (figure 4).

As one participant noted, âone of the things I really liked, one of the reasons that I write is to share the good stuff that happensâ. Intertwined with this, we can witness how participants are keen to reclaim and recentre certain aspects of their identities which perhaps they do not zithromax 500mg price get the opportunity to voice in other (particularly, medical) contexts. As one participant reflected on their writing. ÂI think there is that bit of still being a mum and not being a carer or a medical secretaryâ. Parents of children with rare genetic conditions are often implicitly expected to become âexpert caregiversââsomething which healthcare systems rely on, though simultaneously struggle to acknowledge (Baumbusch, Mayer, and Sloan-Yip 2018).âMy Magical Girlââa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 4 âMy Magical Girlââa piece of writing from one of our writing groups.Similarly, another participant reflecting on the writing groups explained:We did a narrative piece that Iâm just looking at now and I think that does what I like to do, which is just show some of the normal stuff zithromax 500mg price around living with someone with a rare condition.

Just trying to show that we do have a normal life and just showing that we do have things in common with other people, we do have things we can talk about and if you come and talk to us or read our writing, it doesnât have to be about genetics!. Weâve got other things that are in our lives and are important to us.At first glance, some of the written excerpts appeared to describe aspects of life quite mundane and unremarkable. However, when read through the context zithromax 500mg price of rare genetic conditions, these pieces can draw attention to how such multiple aspects of everyday life are reconfigured and challenged. Indeed, one participant reflected that, âI donât think I wrote particularly much about her condition per se, but then I think things leak out in whatever youâre writing aboutâ. While another noted how âno matter what we write about, you can always feel zithromax 500mg price that parenting concern in the back of your mind.

The inability to be completely free of that.â. For example, the written piece âMy Gardenâ (figure 5), touches on the home adaptations and extensions often required to allow domestic spaces to become accessible, the exclusions that can be felt from public spaces lacking specialist play equipment and the vulnerabilities that a rare diagnosis can bring in zithromax times.'My Garden'âa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 5 'My Garden'âa piece of writing from one of our writing groups.Many of the pieces written as part of our two writing groups explored some of these other things, whether descriptions of gardens, fond memories or day-to-day conversations. Not all of them were approached through the lens of zithromax 500mg price rare conditions. Instead, caring responsibilities or medical paraphernalia featured as an absent-presence. Yet, many of these pieces of writing, even when not directly or explicitly mentioning rare disease, carried messages and themes that other participants took to be particularly meaningful when interpreted through their own lived experience of rare genetic conditions, such as âThe Blanketâ (figure 6).'The Blanket'âa piece of writing from one of our writing groups." data-icon-position data-hide-link-title="0">Figure 6 'The Blanket'âa piece of writing from one of our writing groups.The Blanket was amazing because it was that kind of completionist idea, the idea that the caring and dealing with the genetic odyssey is a never-ending saga and so you never get to complete anything because youâve got to do it again from scratch tomorrow.

The blanket more than anything else kind of zithromax 500mg price touched me. Itâs the one I really took away with me.Writing in this way gave participants scope and freedom to tell stories that they feltâas one participant describedââcould only happen by metaphorâ. It provided a way to represent aspects of their lives and experiences that exceeded what could zithromax 500mg price be conveyed in oral recollections and explanations. The blank page and freedom to write about anything was an important way of creating a space where people felt comfortable to explore different narratives, centre different identities and challenge assumptions about life with rare conditions. As one participant explained:I was a bit worried that at the beginning, we would be invited to delve into points in our story that we felt were pivotal or particularly strong memories.

And I was very glad that [the facilitator] didn't zithromax 500mg price do that. She was very careful to say, this could be any of your experiences, write about any of it. And then, of course, you can choose how far you tip-toe into that or not. And that was good.With this in mind, we want to briefly turn our attention to reflecting on the value that writing has had here, as a qualitative method, and how it has allowed us as researchers to explore the lifeworlds of families touched by zithromax 500mg price genetic conditions.Reflecting on the value of participatory-writing for social researchParticipatory-writing has enabled us to learn about many of the things that mattered to our participants. It has given us an insight into their everyday lives.

The complexities, the zithromax 500mg price challenges, the frustrations. Writing (and the interlinked processes of sharing and reading) has allowed our participants to voice their narratives and representations in ways that they found to be important and authentic.The written pieces that were createdâwhether poem or proseâhave been immensely evocative. We have included as many as possible, and in full. Particularly as, to quote Frank (2012, 36), âeach zithromax 500mg price story must be considered as a whole. Methods that fragment stories serve other purposesâ.

Herein lies one of the challenges of participatory-writing, in that what is produced does not lend itself well zithromax 500mg price to the demands and constraints of academic publishing!. Though we hope to also demonstrate what is achievable even when time is short. One of the largest challenges of the method that we and our participants reflected on were discussions around privacy and confidentiality.Thereâs a lot of stuff now that I have to be so careful, because of protecting the kidsâ privacy. Thereâs stuff Iâd like to talk about because it affects me, some of the conversations that weâve had to have, I canât put those anywhere and itâs not that I want to necessarily share that as such, itâs a difficult one in that sometimes it is just cathartic to get it out and write it zithromax 500mg price out but then Iâm always mindful, who is reading this?. How can this come back in the future?.

How would that get back?. How would I feel if my kids, how would they feel if zithromax 500mg price this was out there?. Writing brings with it a greater sense of permeance and mobility. It produces a record in ways different to that of zithromax 500mg price conversation. In our research, we always ensured that people felt comfortable to not share what they had writtenâand indeed, some people did not.

Throughout the process we stressed the optional nature and modular approach to sharing, allowing people to choose what was shared with us as researchers, what was shared within the group, and whatâif anythingâcould be shared more widely, for example, the pieces of writing featured in this publication. Participants assessed this issue on a piece-by-piece basis and knew that we as researchers wanted them to retain full control over everything they had written.It was encouraging zithromax 500mg price that participants reflected on how writing had, as a method, both encouraged and enabled them to detail aspects of their experience that might not have come to the fore had we relied solely on oral interviews. Writing, as one of our participants described, âreally threw a light on those things that itâs really hard to explain under other circumstancesâ. Another participant described noticing that the written medium had encouraged them to âdig a little bit moreâ into their feelings:[You] can twiddle with it, so like we might come out of this meeting now and I might think, âoh god, I wish Iâd said thatâ. Whereas if youâve got a week or so to actually play with it and add or take away from it or whatever, because sometimes you write something and itâs done, but then you start typing it zithromax 500mg price up and youâll just rephrase it in a different way.

So, thereâs that time to actually consider it.The opportunity to creatively use metaphors, write-between-the-lines, and crucially, take the time to craft and edit narratives gave our participants the opportunity to consider how they responded, and to convey what they felt was an added level of detail. For some, it was particularly the zithromax 500mg price opportunities that writing offered to make these narratives âmore lively and interestingâ that was appealing. This liveliness is particularly important if we take seriously Vanniniâs claims that social research ought to consider the âunique and novel ways it can reverberate with people, what social change or intellectual fascination it can inspire, what impressions it can animate, what surprises it can generate, what expectations it can violate, what new stories it can generateâ(Vannini 2015, 12). This involves recognising the performative quality of words themselves and the intersubjective means by which knowledge is co-created by writer and reader (Anderson 2014), a shift from aiming to explain how something might âfeelâ to instead attempting to expressively evoke how something might âfeelâ.Writing in this way has thus been a valuable method for us. But it was also an approach which our participants valued zithromax 500mg price and embraced.

Participants described the cathartic release of writing something and then âletting go of itâ, something that also enabled them to have a level of distance from what was produced and represented.Iâm usually writing something because I know that Iâm going to put it somewhere somebody can read it. But this, I was just writing it. I suppose in some ways that was different [â¦] in terms of the idea of a revelation and feeling things.Writing provided a way for participants to navigate and negotiate zithromax 500mg price vulnerability on their own terms. It produced a level of solidarity and sociality among the groups too, one that acted as a counter to what one participant described as âthe isolation and loneliness that lots of carers feelâ. Weâdâperhaps naivelyâinitiated this research in the hopes of producing material that would be engaging and informative to healthcare professionals, however, it quickly became apparent that reading other peopleâs writing was powerful zithromax 500mg price and rewarding for other families affected by rare conditions too.I think being able to connect to what other people were saying.

I know there was a piece in particular that [participant] wrote, and I felt like that could have been something that I actually could have written myself. The language that she used, the situation that it was about, it was definitely something that I thought, âWow thatâs my life, I could have written that.â That was quite strange actually, it was nice though.This overlapped with what participants felt to be another strand of value in writing about their experiences. Being heard.Thereâs just something about knowing that people are listening and actually zithromax 500mg price giving you a really nice way to talk about things. Itâs as far away from medicalised as you can get, isnât it, just doing creative writing.The creativity of the medium, and its differentiation from the language and communication styles associated with more clinical discourse became something that in itself had a generative potential. Participants felt enabled to claim an ownership and validity to their representations of zithromax 500mg price experiences.

The written form had an authority and level of definition that empowered people to write about the more-than-medical realities that constitute life with rare genetic conditions. It provided an important outlet for people to voice their narrativesâoften stories that they felt had no place or might even undermine their expertise. As one participant commented, zithromax 500mg price ânobody asks me this stuffâ. Another described how,I think people see you swan-like gliding along, having these silly ideas about how easy youâre making it look. They donât see any of all of the bits that are going on behind it and writing about nappies and children being resuscitated and all of that kind of thing.

I suppose I feel it allows me to tell people what itâs really like.Again, it emphasises the value of taking an everyday approach, and considering what is âleft overâ (Lefebvre 1991), what exceeds or escapes more formalised representations of life with rare conditions, and what is absent from the genomic imaginaries and promissory discourses that are created and mobilised at a political level.ConclusionIn the zithromax 500mg price spirit of dialogical narrative analysis, our aim has never been to âsummarise our findingsâ, but ârather to open continuing possibilities of listening and of responding to what is heardâ (Frank 2012, 36). Stories are integral to medical care, as Nicholas and Gillett (1997, 296) argue, âin its representation of subjective experience, narrative gives us access to the perceptions and valuation of other human beings, and thus narrative bioethics is a means of thinking about the meaning of illness in the life of a patient and about the role of the physician in the patient-physician interactionâ. The stories produced through our writing groups provide a window into the worlds of genomic medicine, the worlds outside of the zithromax 500mg price clinic. They are powerful, and exist as a reminder of the wider context in which families affected by rare disease are operatingâthe structural, social, administrative and bureaucratic challenges which must be navigated. Challenges that are compounded by one another.

But also, zithromax 500mg price the joys, the normality, the forgettability, the not-quite-all-consuming nature of rare conditions, and the opportunities that families find to resist a wholescale medicalisation or pathologisation of life. These stories do not provide answers or solutions. Instead, their value lies in helping to unfold the implications of experiences and illuminating what is often submerged or eclipsed by wider sociotechnical frames (Morris 2001). As Featherstone zithromax 500mg price et al. (2006, 149) argue âit is vital for researchers and practitioners alike to ground their work in an understanding of everyday family practices that is sensitive to their complexitiesâ.We know that stories have lives, that stories travel, that stories remain memorable (Parr 2021).

We hope that the excerpts we have showcased here, along with those that will be published elsewhere, might prompt zithromax 500mg price greater understanding of the lived experiences of families whose lives have become entwined with the genomics agenda. Narratives can serve as a reminder of how medical practices are experienced by patients, but also how medical encounters are situated within, against and alongside everything else that happens in peopleâs lives (Nicholas and Gillett 1997). As Morris (2001, 55) has described, this is not a practice of thinking about stories, but rather a process of thinking with stories, âallowing narrative to work on usâ.Data availability statementNo data are available. Due to zithromax 500mg price the highly personal, sensitive and emotional nature of the qualitative data generated, and in order to respect participantâs preferences and consent, at this stage data is not being made publicly available beyond what has been published in this article. Interested parties are welcome to contact the corresponding author for further details.Ethics statementsPatient consent for publicationNot applicable.Ethics approvalThis study involves human participants.

This project and other elements of the authors' research were granted ethical and research governance approval by The Brighton and Sussex Medical School Research Governance and Ethics Committee (ER/BSMS9KQM/2). Participants gave informed consent to zithromax 500mg price participate in the study before taking part.AcknowledgmentsThe authors thank the peer reviewers and editors, who provided deep engagement with their work and for the generosity, kindness and openness towards this manuscript.Notes1. There is a long tradition of using stories, narratives and writing as a way to prompt healthcare professionals to reflect on medical ethics (Jones 1999. Nelson 1997) zithromax 500mg price. This often takes literary sources as a starting point, though there is a growing interest in gathering stories from much more diverse places.

For example, Gualtieri and Akhtar (2013) describe how blogs written by patients can offer insights and rich narratives, and provide a means to reflect on the psychosocial and emotional consequences of chronic disease. Using âfoundâ material in this way however can create complexities around consent (Hookway 2008) and thus there are opportunities to think about more equitable and participatory ways of researching and writing zithromax 500mg price with participants.2. RG has lived experience of a rare genetic condition themselves. The decision for RG to be present was discussed with potential participants who suggested they would be keen for them to be there..

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AbstractOculo-auriculo-vertebral spectrum (OAVS) or Goldenhar syndrome is due to an abnormal development zithromax 1 gm powder packet of first and second branchial arches derivatives during embryogenesis and is characterised by hemifacial microsomia associated with auricular, ocular and vertebral malformations. The clinical and genetic heterogeneity of this spectrum with incomplete penetrance and variable expressivity, render its molecular diagnosis difficult. Only a few recurrent CNVs and genes have been identified as causatives in this complex disorder so far. Prenatal environmental zithromax 1 gm powder packet causal factors have also been hypothesised.

However, most of the patients remain without aetiology. In this review, we aim at updating clinical diagnostic criteria and describing genetic and non-genetic aetiologies, animal models as well as novel diagnostic tools and surgical management, in order to help and improve clinical care and genetic counselling of these patients and their families.human geneticsdisorders of environmental origingenetic heterogeneitygenetics.

AbstractOculo-auriculo-vertebral spectrum (OAVS) or Goldenhar syndrome is due to an abnormal development of first and second branchial arches more info here derivatives during embryogenesis and is characterised by hemifacial microsomia zithromax 500mg price associated with auricular, ocular and vertebral malformations. The clinical and genetic heterogeneity of this spectrum with incomplete penetrance and variable expressivity, render its molecular diagnosis difficult. Only a few recurrent CNVs and genes have been identified as causatives in this complex disorder so far. Prenatal environmental causal factors have zithromax 500mg price also been hypothesised. However, most of the patients remain without aetiology.

In this review, we aim at updating clinical diagnostic criteria and describing genetic and non-genetic aetiologies, animal models as well as novel diagnostic tools and surgical management, in order to help and improve clinical care and genetic counselling of these patients and their families.human geneticsdisorders of environmental origingenetic heterogeneitygenetics.