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During this month in which we celebrate National Indigenous Peoples Day, thereâs encouraging health news about American Indian and cheap kamagra http://wowsignal.co.uk/twitter/the-value-of-hyperlocal-channels-during-incidents/ Alaska Native (AI/AN) elders. A recent AARP Public Policy Institute report found that influenza, pneumonia, and shingles vaccinations increased among adults ages 50 and older in 2020, though disparities continued. Even so, AI/AN adults ages 50-plus had the cheap kamagra highest rates of pneumococcal vaccination, at 47 percent. Following the AI/AN adultsâ rates were those of white (46 percent), Black (32 percent), Asian (30 percent), and Hispanic (25 percent) older adults.The high vaccination rate was surprising since AI/AN elders face numerous health care access challenges.

Not only is the Indian Health Service (IHS) system underfunded, but research shows that AI/AN elders are less likely than other older adult populations to seek medical care, have a routine source of care, or trust their providers and health care organizations.The finding was even more striking when compared to influenza vaccination rates. AI/AN elders tied with Hispanic older adults for having the lowest rates for that treatment in 2020 (50 cheap kamagra percent). Their rate was well below that for white older adults, 62 percent, the highest of all groups. With respect to shingles treatments, AI/AN elders trailed both white (33 percent) and Asian (29 percent) older adults while coming in higher cheap kamagra than Black (17 percent) and Hispanic (15 percent) older adults.Pneumococcal Rates among AI/AN EldersOf course, 2020 could have been an anomaly.

To determine if that was the case, we calculated pneumococcal vaccination rates from previous years. Between 2016 and 2020, National Health Interview Survey (NHIS) data, which we used for our original analysis, did show a generally progressive narrowing of the gap between AI/AN and white adults ages 50 and older. Then in 2020, the 50+ AI/AN vaccination rate first cheap kamagra exceeded the 50+ white vaccination rateâhighlighting a trend, rather than representing an anomaly.We also looked at IHS data and found reports of even higher rates of pneumococcal vaccination among AI/AN elders. From 2016 to 2020, IHS reported the rate of AI/AN adults ages 65 and older who have ever had a pneumococcal treatment remained consistently strong, at around 83 percent.

This rate reflects reports from IHS facilities, which are limited in number and may not be completely representative of the care that AI/AN cheap kamagra elders receive. Even so, it shows the strong willingness of AI/AN elders to receive the pneumococcal treatment. Whatâs Behind The Higher Rates?. The 2020 AI/AN pneumococcal vaccination rate is especially good news since the pneumonia prevalence among AI/AN adults was four times higher than the general population, and pneumonia is a leading cause of death among AI/AN elders.Yet despite the encouraging news, the reasons cheap kamagra behind it are not yet clear.

We were unable to find, for example, any evidence of a concerted public or private effort to promote pneumococcal vaccination in this population. It is cheap kamagra also unclear why pneumococcal vaccinations rates are relatively high among AI/AN elders while influenza vaccinations rates remain low. Nevertheless, the increase in pneumococcal vaccinations over time could indicate the presence of unknown, but effective, drivers that should be explored for future vaccination efforts.Further discussions with AI/AN elders, clinicians, and other health workers can help determine what is driving these rates and how these rates might be affected by erectile dysfunction treatment. Whatever the constellation of factors, these vaccinations are preventing disease and ultimately saving lives..

During this kamagra online next day delivery month in which we celebrate National Indigenous Peoples Day, thereâs encouraging health news about American Indian and Alaska Native (AI/AN) elders. A recent AARP Public Policy Institute report found that influenza, pneumonia, and shingles vaccinations increased among adults ages 50 and older in 2020, though disparities continued. Even so, AI/AN adults ages 50-plus had kamagra online next day delivery the highest rates of pneumococcal vaccination, at 47 percent. Following the AI/AN adultsâ rates were those of white (46 percent), Black (32 percent), Asian (30 percent), and Hispanic (25 percent) older adults.The high vaccination rate was surprising since AI/AN elders face numerous health care access challenges. Not only is the Indian Health Service (IHS) system underfunded, but research shows that AI/AN elders are less likely than other older adult populations to seek medical care, have a routine source of care, or trust their providers and health care organizations.The finding was even more striking when compared to influenza vaccination rates.

AI/AN elders tied with Hispanic older adults for having the lowest rates for that treatment in kamagra online next day delivery 2020 (50 percent). Their rate was well below that for white older adults, 62 percent, the highest of all groups. With respect to shingles treatments, AI/AN elders trailed both white (33 percent) and Asian (29 percent) older adults while coming in higher than Black (17 percent) and Hispanic (15 percent) older adults.Pneumococcal Rates among AI/AN EldersOf course, 2020 could have been an kamagra online next day delivery anomaly. To determine if that was the case, we calculated pneumococcal vaccination rates from previous years. Between 2016 and 2020, National Health Interview Survey (NHIS) data, which we used for our original analysis, did show a generally progressive narrowing of the gap between AI/AN and white adults ages 50 and older.

Then in 2020, the 50+ AI/AN vaccination rate first exceeded the 50+ white vaccination rateâhighlighting a trend, rather than representing kamagra online next day delivery an anomaly.We also looked at IHS data and found reports of even higher rates of pneumococcal vaccination among AI/AN elders. From 2016 to 2020, IHS reported the rate of AI/AN adults ages 65 and older who have ever had a pneumococcal treatment remained consistently strong, at around 83 percent. This rate kamagra online next day delivery reflects reports from IHS facilities, which are limited in number and may not be completely representative of the care that AI/AN elders receive. Even so, it shows the strong willingness of AI/AN elders to receive the pneumococcal treatment. Whatâs Behind The Higher Rates?.

The 2020 AI/AN pneumococcal vaccination rate is especially good news since the pneumonia prevalence among AI/AN adults was four times higher than the general population, and pneumonia is a leading cause of death among AI/AN elders.Yet despite the encouraging news, the kamagra online next day delivery reasons behind it are not yet clear. We were unable to find, for example, any evidence of a concerted public or private effort to promote pneumococcal vaccination in this population. It is also unclear why pneumococcal vaccinations rates are relatively high among AI/AN elders while kamagra online next day delivery influenza vaccinations rates remain low. Nevertheless, the increase in pneumococcal vaccinations over time could indicate the presence of unknown, but effective, drivers that should be explored for future vaccination efforts.Further discussions with AI/AN elders, clinicians, and other health workers can help determine what is driving these rates and how these rates might be affected by erectile dysfunction treatment. Whatever the constellation of factors, these vaccinations are preventing disease and ultimately saving lives..

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Income Limits https://www.ferienhaus-sticher-borkum.de/buy-kamagra-without-prescription/ & kamagra oral jelly 50mg. Rules and Household Size 3. The Three MSP Programs - What are they and how are they Different?. 4 kamagra oral jelly 50mg.

FOUR Special Benefits of MSP Programs. Back Door to Extra Help with Part D MSPs Automatically Waive Late Enrollment Penalties for Part B - and allow enrollment in Part B year-round outside of the short Annual Enrollment Period No Medicaid Lien on Estate to Recover Payment of Expenses Paid by MSP Food Stamps/SNAP not reduced by Decreased Medical Expenses when Enroll in MSP - at least temporarily 5. Enrolling in an MSP kamagra oral jelly 50mg - Automatic Enrollment &. Applications for People who Have Medicare WHO IS AUTOMATICALLY ENROLLED IN AN MSP Applying for MSP Directly with Local Medicaid Program - including those who already have Medicaid through local Medicaid program but need MSP, and those newly applying for MSP Enrolling in an MSP if you have Medicaid and Just Became Eligible for Medicare MIPPA - SSA Notifies Social Security recipients that they may be eligible for MSP based on their income.

6. Enrolling in an MSP for People age 65+ who Do Not Qualify for Free Medicare Part A - kamagra oral jelly 50mg the "Part A Buy-In Program" 7. What Happens After MSP Approved - How Part B Premium is Paid 8 Special Rules for QMBs - How Medicare Cost-Sharing Works 1. NO ASSET LIMIT!.

Since April 1, 2008, none of the three MSP programs have resource limits in New York -- which kamagra oral jelly 50mg means many Medicare beneficiaries who might not qualify for Medicaid because of excess resources can qualify for an MSP. 1.A. SUMMARY CHART OF MSP BENEFITS QMB SLIMB QI-1 Eligibility ASSET LIMIT NO LIMIT IN NEW YORK STATE INCOME LIMIT (2022) Single Couple Single Couple Single Couple $1,133 $1,526 $1,359 $1,831 $1,529 $2,060 Federal Poverty Level 100% FPL 100 â 120% FPL 120 â 135% FPL Benefits Pays Monthly Part B premium?. YES, and also Part A premium if did not have enough work kamagra oral jelly 50mg quarters and meets citizenship requirement.

See âPart A Buy-Inâ YES YES Pays Part A &. B deductibles &. Co-insurance kamagra oral jelly 50mg YES - with limitations NO NO Retroactive to Filing of Application?. Yes - Benefits begin the month after the month of the MSP application.

18 NYCRR Â§360-7.8(b)(5) Yes â Retroactive to 3rd month before month of application, if eligible in prior months Yes â may be retroactive to 3rd month before month of applica-tion, but only within the current calendar year. (No retro for January kamagra oral jelly 50mg application). See GIS 07 MA 027. Can Enroll in MSP and Medicaid at Same Time?.

YES YES kamagra oral jelly 50mg NO!. Must choose between QI-1 and Medicaid. Cannot have both, not even Medicaid with a spend-down. 2 kamagra oral jelly 50mg.

INCOME LIMITS and RULES Each of the three MSP programs has different income eligibility requirements and provides different benefits. The income limits are tied to the Federal Poverty Level (FPL). The figures in kamagra oral jelly 50mg the chart are based on a document issued by HRA in March 2022 (Box 7) based on the 2022 FPL. See 2022 Fact Sheet on MSP in NYS by Medicare Rights Center ENGLISH SPANISH Income is determined by the same methodology as is used for determining in eligibility for SSI The rules for counting income for SSI-related (Aged 65+, Blind, or Disabled) Medicaid recipients, borrowed from the SSI program, apply to the MSP program, except for the new rules about counting household size for married couples.

367-a(3)(c)(2), NYS DOH 2000-ADM-7, 89-ADM-7 p.7. Gross income is counted, although there are certain types of income that are disregarded. The most common income disregards, also known as deductions, include. (a) The first $20 of your &.

Your spouse's monthly income, earned or unearned ($20 per couple max). (b) SSI EARNED INCOME DISREGARDS. * The first $65 of monthly wages of you and your spouse, * One-half of the remaining monthly wages (after the $65 is deducted). * Other work incentives including PASS plans, impairment related work expenses (IRWEs), blind work expenses, etc.

For information on these deductions, see The Medicaid Buy-In for Working People with Disabilities (MBI-WPD) and other guides in this article -- though written for the MBI-WPD, the work incentives apply to all Medicaid programs, including MSP, for people age 65+, disabled or blind. (c) monthly cost of any health insurance premiums but NOT the Part B premium, since Medicaid will now pay this premium (may deduct Medigap supplemental policies, vision, dental, or long term care insurance premiums, and the Part D premium but only to the extent the premium exceeds the Extra Help benchmark amount) (d) Food stamps not counted. You can get a more comprehensive listing of the SSI-related income disregards on the Medicaid income disregards chart. As for all benefit programs based on financial need, it is usually advantageous to be considered a larger household, because the income limit is higher.

The above chart shows that Households of TWO have a higher income limit than households of ONE. The MSP programs use the same rules as Medicaid does for the Disabled, Aged and Blind (DAB) which are borrowed from the SSI program for Medicaid recipients in the âSSI-related category.â Under these rules, a household can be only ONE or TWO. 18 NYCRR 360-4.2. See DAB Household Size Chart.

Married persons can sometimes be ONE or TWO depending on arcane rules, which can force a Medicare beneficiary to be limited to the income limit for ONE person even though his spouse who is under 65 and not disabled has no income, and is supported by the client applying for an MSP. EXAMPLE. Bob's Social Security is $1300/month. He is age 67 and has Medicare.

His wife, Nancy, is age 62 and is not disabled and does not work. Under the old rule, Bob was not eligible for an MSP because his income was above the Income limit for One, even though it was well under the Couple limit. In 2010, NYS DOH modified its rules so that all married individuals will be considered a household size of TWO. DOH GIS 10 MA 10 Medicare Savings Program Household Size, June 4, 2010.

This rule for household size is an exception to the rule applying SSI budgeting rules to the MSP program. Under these rules, Bob is now eligible for an MSP. When is One Better than Two?. Of course, there may be couples where the non-applying spouse's income is too high, and disqualifies the applying spouse from an MSP.

In such cases, "spousal refusal" may be used SSL 366.3(a). (Link is to NYC HRA form, can be adapted for other counties). In NYC, if you have a Medicaid case with HRA, instead of submitting an MSP application, you only need to complete and submit MAP-751W (check off "Medicare Savings Program Evaluation") and fax to (917) 639-0837. (The MAP-751W is also posted in languages other than English in this link.

(Updated 4/14/2021.)) 3. The Three Medicare Savings Programs - what are they and how are they different?. 1. Qualified Medicare Beneficiary (QMB).

The QMB program provides the most comprehensive benefits. Available to those with incomes at or below 100% of the Federal Poverty Level (FPL), the QMB program covers virtually all Medicare cost-sharing obligations. Part B premiums, Part A premiums, if there are any, and any and all deductibles and co-insurance. QMB coverage is not retroactive.

The programâs benefits will begin the month after the month in which your client is found eligible. ** See special rules about cost-sharing for QMBs below - updated with new CMS directive issued January 2012 ** See NYC HRA QMB Recertification form ** Even if you do not have Part A automatically, because you did not have enough wages, you may be able to enroll in the Part A Buy-In Program, in which people eligible for QMB who do not otherwise have Medicare Part A may enroll, with Medicaid paying the Part A premium (Materials by the Medicare Rights Center). 2. Specifiedl Low-Income Medicare Beneficiary (SLMB).

For those with incomes between 100% and 120% FPL, the SLMB program will cover Part B premiums only. SLMB is retroactive, however, providing coverage for three months prior to the month of application, as long as your client was eligible during those months. 3. Qualified Individual (QI-1).

For those with incomes between 120% and 135% FPL, and not receiving Medicaid, the QI-1 program will cover Medicare Part B premiums only. QI-1 is also retroactive, providing coverage for three months prior to the month of application, as long as your client was eligible during those months. However, QI-1 retroactive coverage can only be provided within the current calendar year. (GIS 07 MA 027) So if you apply in January, you get no retroactive coverage.

Q-I-1 recipients would be eligible for Medicaid with a spend-down, but if they want the Part B premium paid, they must choose between enrolling in QI-1 or Medicaid. They cannot be in both. It is their choice. DOH MRG p.

19. In contrast, one may receive Medicaid and either QMB or SLIMB. 4. Four Special Benefits of MSPs (in addition to NO ASSET TEST).

Benefit 1. Back Door to Medicare Part D "Extra Help" or Low Income Subsidy -- All MSP recipients are automatically enrolled in Extra Help, the subsidy that makes Part D affordable. They have no Part D deductible or doughnut hole, the premium is subsidized, and they pay very low copayments. Once they are enrolled in Extra Help by virtue of enrollment in an MSP, they retain Extra Help for the entire calendar year, even if they lose MSP eligibility during that year.

The "Full" Extra Help subsidy has the same income limit as QI-1 - 135% FPL. However, many people may be eligible for QI-1 but not Extra Help because QI-1 and the other MSPs have no asset limit. People applying to the Social Security Administration for Extra Help might be rejected for this reason. Recent (2009-10) changes to federal law called "MIPPA" requires the Social Security Administration (SSA) to share eligibility data with NYSDOH on all persons who apply for Extra Help/ the Low Income Subsidy.

Data sent to NYSDOH from SSA will enable NYSDOH to open MSP cases on many clients. The effective date of the MSP application must be the same date as the Extra Help application. Signatures will not be required from clients. In cases where the SSA data is incomplete, NYSDOH will forward what is collected to the local district for completion of an MSP application.

The State implementing procedures are in DOH 2010 ADM-03. Also see CMS "Dear State Medicaid Director" letter dated Feb. 18, 2010 Benefit 2. MSPs Automatically Waive Late Enrollment Penalties for Part B Generally one must enroll in Part B within the strict enrollment periods after turning age 65 or after 24 months of Social Security Disability.

An exception is if you or your spouse are still working and insured under an employer sponsored group health plan, or if you have End Stage Renal Disease, and other factors, see this from Medicare Rights Center. If you fail to enroll within those short periods, you might have to pay higher Part B premiums for life as a Late Enrollment Penalty (LEP). Also, you may only enroll in Part B during the Annual Enrollment Period from January 1 - March 31st each year, with Part B not effective until the following July. Enrollment in an MSP automatically eliminates such penalties...

For life.. Even if one later ceases to be eligible for the MSP. AND enrolling in an MSP will automatically result in becoming enrolled in Part B if you didn't already have it and only had Part A. See Medicare Rights Center flyer.

Benefit 3. No Medicaid Lien on Estate to Recover MSP Benefits Paid Generally speaking, states may place liens on the Estates of deceased Medicaid recipients to recover the cost of Medicaid services that were provided after the recipient reached the age of 55. Since 2002, states have not been allowed to recover the cost of Medicare premiums paid under MSPs. In 2010, Congress expanded protection for MSP benefits.

Beginning on January 1, 2010, states may not place liens on the Estates of Medicaid recipients who died after January 1, 2010 to recover costs for co-insurance paid under the QMB MSP program for services rendered after January 1, 2010. The federal government made this change in order to eliminate barriers to enrollment in MSPs. See NYS DOH GIS 10-MA-008 - Medicare Savings Program Changes in Estate Recovery The GIS clarifies that a client who receives both QMB and full Medicaid is exempt from estate recovery for these Medicare cost-sharing expenses. Benefit 4.

SNAP (Food Stamp) benefits not reduced despite increased income from MSP - at least temporarily Many people receive both SNAP (Food Stamp) benefits and MSP. Income for purposes of SNAP/Food Stamps is reduced by a deduction for medical expenses, which includes payment of the Part B premium. Since approval for an MSP means that the client no longer pays for the Part B premium, his/her SNAP/Food Stamps income goes up, so their SNAP/Food Stamps go down. Here are some protections.

Do these individuals have to report to their SNAP worker that their out of pocket medical costs have decreased?. And will the household see a reduction in their SNAP benefits, since the decrease in medical expenses will increase their countable income?. The good news is that MSP households do NOT have to report the decrease in their medical expenses to the SNAP/Food Stamp office until their next SNAP/Food Stamp recertification. Even if they do report the change, or the local district finds out because the same worker is handling both the MSP and SNAP case, there should be no reduction in the householdâs benefit until the next recertification.

New Yorkâs SNAP policy per administrative directive 02 ADM-07 is to âfreezeâ the deduction for medical expenses between certification periods. Increases in medical expenses can be budgeted at the householdâs request, but NYS never decreases a householdâs medical expense deduction until the next recertification. Most elderly and disabled households have 24-month SNAP certification periods. Eventually, though, the decrease in medical expenses will need to be reported when the household recertifies for SNAP, and the household should expect to see a decrease in their monthly SNAP benefit.

It is really important to stress that the loss in SNAP benefits is NOT dollar for dollar. A $100 decrease in out of pocket medical expenses would translate roughly into a $30 drop in SNAP benefits. See more info on SNAP/Food Stamp benefits by the Empire Justice Center, and on the State OTDA website. Some clients will be automatically enrolled in an MSP by the New York State Department of Health (NYSDOH) shortly after attaining eligibility for Medicare.

Others need to apply. The 2010 "MIPPA" law introduced some improvements to increase MSP enrollment. See 3rd bullet below. Also, some people who had Medicaid through the Affordable Care Act before they became eligible for Medicare have special procedures to have their Part B premium paid before they enroll in an MSP.

See below. WHO IS AUTOMATICALLY ENROLLED IN AN MSP. Clients receiving even $1.00 of Supplemental Security Income should be automatically enrolled into a Medicare Savings Program (most often QMB) under New York Stateâs Medicare Savings Program Buy-in Agreement with the federal government once they become eligible for Medicare. They should receive Medicare Parts A and B.

Clients who are already eligible for Medicare when they apply for Medicaid should be automatically assessed for MSP eligibility when they apply for Medicaid. (NYS DOH 2000-ADM-7 and GIS 05 MA 033). Clients who apply to the Social Security Administration for Extra Help, but are rejected, should be contacted &. Enrolled into an MSP by the Medicaid program directly under new MIPPA procedures that require data sharing.

Strategy TIP. Since the Extra Help filing date will be assigned to the MSP application, it may help the client to apply online for Extra Help with the SSA, even knowing that this application will be rejected because of excess assets or other reason. SSA processes these requests quickly, and it will be routed to the State for MSP processing. Since MSP applications take a while, at least the filing date will be retroactive.

Note. The above strategy does not work as well for QMB, because the effective date of QMB is the month after the month of application. As a result, the retroactive effective date of Extra Help will be the month after the failed Extra Help application for those with QMB rather than SLMB/QI-1. APPLYING FOR MSP DIRECTLY WITH LOCAL MEDICAID OFFICE Client already has Medicaid with Local District/HRA but not MSP.

They should NOT have to submit an MSP application because the local district is required to review all Medicaid recipients for MSP eligibility and enroll them. (NYS DOH 2000-ADM-7 and GIS 05 MA 033). But if a Medicaid recipient does not have MSP, contact the Local Medicaid office and request that they be enrolled. In NYC - Use Form 751W and check the box on page 2 requesting evaluation for Medicare Savings Program.

Fax it to the Undercare Division at 1-917-639-0837 or email it to undercareproviderrelations@hra.nyc.gov. Use by secure email. If enrolling in the MSP will cause a Spenddown (because income will increase by the amount of the Part B premium, include a completed and signed "Choice Notice" (MAP-3054a)(3/19/2019)(You must adapt this notice - generally check box 3B on page 2 to select enrollment in MSP while keeping Medicaid.) If do not have Medicaid -- must apply for an MSP through their local social services district. (See more in Section D.

Below re those who already have Medicaid through the Affordable Care Act before they became eligible for Medicare. If you are applying for MSP only (not also Medicaid), you can use the simplified MSP application form (theDOH-4328(Rev. 8/2017-- English) (2017 Spanish version not yet available). Either application form can be mailed in -- there is no interview requirement anymore for MSP or Medicaid.

See 10 ADM-04. Applicants will need to submit proof of income, a copy of their Medicare card (front &. Back), and proof of residency/address. See the application form for other instructions.

One who is only eligible for QI-1 because of higher income may ONLY apply for an MSP, not for Medicaid too. One may not receive Medicaid and QI-1 at the same time. If someone only eligible for QI-1 wants Medicaid, s/he may enroll in and deposit excess income into a pooled Supplemental Needs Trust, to bring her countable income down to the Medicaid level, which also qualifies him or her for SLIMB or QMB instead of QI-1. Advocates in NYC can sign up for a half-day "Deputization Training" conducted by the Medicare Rights Center, at which you'll be trained and authorized to complete an MSP application and to submit it via the Medicare Rights Center, which submits it to HRA without the client having to apply in person.

Enrolling in an MSP if you already have Medicaid, but just become eligible for Medicare" The procedure for getting the Part B premium paid is different for those whose Medicaid was administered by the NYS of Health Exchange (Marketplace), as opposed to their local social services district. The procedure is also different for those who obtain Medicare because they turn 65, as opposed to obtaining Medicare based on disability. Either way, Medicaid recipients who transition onto Medicare should be automatically evaluated for MSP eligibility at their next Medicaid recertification. NYS DOH 2000-ADM-7 Individuals can also affirmatively ask to be enrolled in MSP in between recertification periods.

Individuals who are eligible for Medicaid with a spenddown can opt whether or not to receive MSP. (Medicaid Reference Guide (MRG) p. 19). Obtaining MSP may increase their spenddown.

IF CLIENT HAD MEDICAID ON THE MARKETPLACE (NYS of Health Exchange) before obtaining Medicare - See article about the Medicare Insurance Payment Program (MIPP). IF CLIENT HAD MEDICAID THROUGH LOCAL DISTRICT - see here, same procedure for any Medicaid recipient who needs MSP. MIPPA - Under MIPPA, the SSA sends a form letter to people who may be eligible for a Medicare Savings Program or Extra Help (Low Income Subsidy - LIS) that they may apply. The letters are.

Â· Beneficiary has Extra Help (LIS), but not MSP Â· Beneficiary has no Extra Help (LIS) or MSP 6. Enrolling in MSP for People Age 65+ who do Not have Free Medicare Part A - the "Part A Buy-In Program" Seniors WITHOUT MEDICARE PART A or B -- They may be able to enroll in the Part A Buy-In program, in which people eligible for QMB who are age 65+ who do not otherwise have Medicare Part A may enroll in Part A, with Medicaid paying the Part A premium. See Step-by-Step Guide by the Medicare Rights Center). This guide explains the various steps in "conditionally enrolling" in Part A at the SSA office, which must be done before applying for QMB at the Medicaid office, which will then pay the Part A premium.

See also GIS 04 MA/013. In June, 2018, the SSA revised the POMS manual procedures for the Part A Buy-In to to address inconsistencies and confusion in SSA field offices and help smooth the path for QMB enrollment. The procedures are in the POMS Section HI 00801.140 "Premium-Free Part A Enrollments for Qualified Medicare BenefiIaries." It includes important clarifications, such as. SSA Field Offices should explain the QMB program and conditional enrollment process if an individual lacks premium-free Part A and appears to meet QMB requirements.

SSA field offices can add notes to the âRemarksâ section of the application and provide a screen shot to the individual so the individual can provide proof of conditional Part A enrollment when applying for QMB through the state Medicaid program. Beneficiaries are allowed to complete the conditional application even if they owe Medicare premiums. In Part A Buy-in states like NYS, SSA should process conditional applications on a rolling basis (without regard to enrollment periods), even if the application coincides with the General Enrollment Period. (The General Enrollment Period is from Jan 1 to March 31st every year, in which anyone eligible may enroll in Medicare Part A or Part B to be effective on July 1st).

7. What happens after the MSP approval - How is Part B premium paid For all three MSP programs, the Medicaid program is now responsible for paying the Part B premiums, even though the MSP enrollee is not necessarily a recipient of Medicaid. The local Medicaid office (DSS/HRA) transmits the MSP approval to the NYS Department of Health â that information gets shared w/ SSA and CMS SSA stops deducting the Part B premiums out of the beneficiaryâs Social Security check. SSA also refunds any amounts owed to the recipient.

) CMS âdeemsâ the MSP recipient eligible for Part D Extra Help/ Low Income Subsidy (LIS). âCan the MSP be retroactive like Medicaid, back to 3 months before the application?. âThe answer is different for the 3 MSP programs. QMB -No Retroactive Eligibility â Benefits begin the month after the month of the MSP application.

18 NYCRR Â§ 360-7.8(b)(5) SLIMB - YES - Retroactive Eligibility up to 3 months before the application, if was eligible This means applicant may be reimbursed for the 3 months of Part B benefits prior to the month of application. QI-1 - YES up to 3 months but only in the same calendar year. No retroactive eligibility to the previous year. 7.

QMBs -Special Rules on Cost-Sharing. QMB is the only MSP program which pays not only the Part B premium, but also the Medicare co-insurance. However, there are limitations. First, co-insurance will only be paid if the provide accepts Medicaid.

Not all Medicare provides accept Medicaid. Second, under recent changes in New York law, Medicaid will not always pay the Medicare co-insurance, even to a Medicaid provider.

No https://www.ferienhaus-sticher-borkum.de/buy-kamagra-without-prescription/ Asset kamagra online next day delivery Limit 1A. Summary Chart of MSP Programs with current income limits 2. Income Limits &.

Rules and kamagra online next day delivery Household Size 3. The Three MSP Programs - What are they and how are they Different?. 4.

FOUR Special Benefits of MSP Programs kamagra online next day delivery. Back Door to Extra Help with Part D MSPs Automatically Waive Late Enrollment Penalties for Part B - and allow enrollment in Part B year-round outside of the short Annual Enrollment Period No Medicaid Lien on Estate to Recover Payment of Expenses Paid by MSP Food Stamps/SNAP not reduced by Decreased Medical Expenses when Enroll in MSP - at least temporarily 5. Enrolling in an MSP - Automatic Enrollment &.

Applications for People who Have Medicare WHO IS AUTOMATICALLY ENROLLED IN AN MSP Applying for MSP Directly with Local Medicaid Program - including those who already have Medicaid through local Medicaid program but kamagra online next day delivery need MSP, and those newly applying for MSP Enrolling in an MSP if you have Medicaid and Just Became Eligible for Medicare MIPPA - SSA Notifies Social Security recipients that they may be eligible for MSP based on their income. 6. Enrolling in an MSP for People age 65+ who Do Not Qualify for Free Medicare Part A - the "Part A Buy-In Program" 7.

What Happens After MSP Approved - How Part B Premium is Paid 8 Special Rules for QMBs - How Medicare Cost-Sharing Works kamagra online next day delivery 1. NO ASSET LIMIT!. Since April 1, 2008, none of the three MSP programs have resource limits in New York -- which means many Medicare beneficiaries who might not qualify for Medicaid because of excess resources can qualify for an MSP.

1.A kamagra online next day delivery. SUMMARY CHART OF MSP BENEFITS QMB SLIMB QI-1 Eligibility ASSET LIMIT NO LIMIT IN NEW YORK STATE INCOME LIMIT (2022) Single Couple Single Couple Single Couple $1,133 $1,526 $1,359 $1,831 $1,529 $2,060 Federal Poverty Level 100% FPL 100 â 120% FPL 120 â 135% FPL Benefits Pays Monthly Part B premium?. YES, and also Part A premium if did not have enough work quarters and meets citizenship requirement.

See âPart kamagra online next day delivery A Buy-Inâ YES YES Pays Part A &. B deductibles &. Co-insurance YES - with limitations NO NO Retroactive to Filing of Application?.

Yes - Benefits begin the month after the month of the kamagra online next day delivery MSP application. 18 NYCRR Â§360-7.8(b)(5) Yes â Retroactive to 3rd month before month of application, if eligible in prior months Yes â may be retroactive to 3rd month before month of applica-tion, but only within the current calendar year. (No retro for January application).

See kamagra online next day delivery GIS 07 MA 027. Can Enroll in MSP and Medicaid at Same Time?. YES YES NO!.

Must choose between QI-1 kamagra online next day delivery and Medicaid. Cannot have both, not even Medicaid with a spend-down. 2.

INCOME kamagra online next day delivery LIMITS and RULES Each of the three MSP programs has different income eligibility requirements and provides different benefits. The income limits are tied to the Federal Poverty Level (FPL). The figures in the chart are based on a document issued by HRA in March 2022 (Box 7) based on the 2022 FPL.

See 2022 Fact Sheet on MSP in NYS by Medicare Rights Center ENGLISH SPANISH Income is determined by the kamagra online next day delivery same methodology as is used for determining in eligibility for SSI The rules for counting income for SSI-related (Aged 65+, Blind, or Disabled) Medicaid recipients, borrowed from the SSI program, apply to the MSP program, except for the new rules about counting household size for married couples. N.Y. Soc.

Serv. L. 367-a(3)(c)(2), NYS DOH 2000-ADM-7, 89-ADM-7 p.7.

Gross income is counted, although there are certain types of income that are disregarded. The most common income disregards, also known as deductions, include. (a) The first $20 of your &.

* Other work incentives including PASS plans, impairment related work expenses (IRWEs), blind work expenses, etc. For information on these deductions, see The Medicaid Buy-In for Working People with Disabilities (MBI-WPD) and other guides in this article -- though written for the MBI-WPD, the work incentives apply to all Medicaid programs, including MSP, for people age 65+, disabled or blind. (c) monthly cost of any health insurance premiums but NOT the Part B premium, since Medicaid will now pay this premium (may deduct Medigap supplemental policies, vision, dental, or long term care insurance premiums, and the Part D premium but only to the extent the premium exceeds the Extra Help benchmark amount) (d) Food stamps not counted.

You can get a more comprehensive listing of the SSI-related income disregards on the Medicaid income disregards chart. As for all benefit programs based on financial need, it is usually advantageous to be considered a larger household, because the income limit is higher. The above chart shows that Households of TWO have a higher income limit than households of ONE.

The MSP programs use the same rules as Medicaid does for the Disabled, Aged and Blind (DAB) which are borrowed from the SSI program for Medicaid recipients in the âSSI-related category.â Under these rules, a household can be only ONE or TWO. 18 NYCRR 360-4.2. See DAB Household Size Chart.

He is age 67 and has Medicare. His wife, Nancy, is age 62 and is not disabled and does not work. Under the old rule, Bob was not eligible for an MSP because his income was above the Income limit for One, even though it was well under the Couple limit.

In 2010, NYS DOH modified its rules so that all married individuals will be considered a household size of TWO. DOH GIS 10 MA 10 Medicare Savings Program Household Size, June 4, 2010. This rule for household size is an exception to the rule applying SSI budgeting rules to the MSP program.

Under these rules, Bob is now eligible for an MSP. When is One Better than Two?. Of course, there may be couples where the non-applying spouse's income is too high, and disqualifies the applying spouse from an MSP.

(The MAP-751W is also posted in languages other than English in this link. (Updated 4/14/2021.)) 3. The Three Medicare Savings Programs - what are they and how are they different?.

1. Qualified Medicare Beneficiary (QMB). The QMB program provides the most comprehensive benefits.

Available to those with incomes at or below 100% of the Federal Poverty Level (FPL), the QMB program covers virtually all Medicare cost-sharing obligations. Part B premiums, Part A premiums, if there are any, and any and all deductibles and co-insurance. QMB coverage is not retroactive.

Specifiedl Low-Income Medicare Beneficiary (SLMB). For those with incomes between 100% and 120% FPL, the SLMB program will cover Part B premiums only. SLMB is retroactive, however, providing coverage for three months prior to the month of application, as long as your client was eligible during those months.

3. Qualified Individual (QI-1). For those with incomes between 120% and 135% FPL, and not receiving Medicaid, the QI-1 program will cover Medicare Part B premiums only.

QI-1 is also retroactive, providing coverage for three months prior to the month of application, as long as your client was eligible during those months. However, QI-1 retroactive coverage can only be provided within the current calendar year. (GIS 07 MA 027) So if you apply in January, you get no retroactive coverage.

DOH MRG p. 19. In contrast, one may receive Medicaid and either QMB or SLIMB.

4. Four Special Benefits of MSPs (in addition to NO ASSET TEST). Benefit 1.

Back Door to Medicare Part D "Extra Help" or Low Income Subsidy -- All MSP recipients are automatically enrolled in Extra Help, the subsidy that makes Part D affordable. They have no Part D deductible or doughnut hole, the premium is subsidized, and they pay very low copayments. Once they are enrolled in Extra Help by virtue of enrollment in an MSP, they retain Extra Help for the entire calendar year, even if they lose MSP eligibility during that year.

Recent (2009-10) changes to federal law called "MIPPA" requires the Social Security Administration (SSA) to share eligibility data with NYSDOH on all persons who apply for Extra Help/ the Low Income Subsidy. Data sent to NYSDOH from SSA will enable NYSDOH to open MSP cases on many clients. The effective date of the MSP application must be the same date as the Extra Help application.

Signatures will not be required from clients. In cases where the SSA data is incomplete, NYSDOH will forward what is collected to the local district for completion of an MSP application. The State implementing procedures are in DOH 2010 ADM-03.

Also see CMS "Dear State Medicaid Director" letter dated Feb. 18, 2010 Benefit 2. MSPs Automatically Waive Late Enrollment Penalties for Part B Generally one must enroll in Part B within the strict enrollment periods after turning age 65 or after 24 months of Social Security Disability.

Enrollment in an MSP automatically eliminates such penalties... For life.. Even if one later ceases to be eligible for the MSP.

AND enrolling in an MSP will automatically result in becoming enrolled in Part B if you didn't already have it and only had Part A. See Medicare Rights Center flyer. Benefit 3.

No Medicaid Lien on Estate to Recover MSP Benefits Paid Generally speaking, states may place liens on the Estates of deceased Medicaid recipients to recover the cost of Medicaid services that were provided after the recipient reached the age of 55. Since 2002, states have not been allowed to recover the cost of Medicare premiums paid under MSPs. In 2010, Congress expanded protection for MSP benefits.

Benefit 4. SNAP (Food Stamp) benefits not reduced despite increased income from MSP - at least temporarily Many people receive both SNAP (Food Stamp) benefits and MSP. Income for purposes of SNAP/Food Stamps is reduced by a deduction for medical expenses, which includes payment of the Part B premium.

Since approval for an MSP means that the client no longer pays for the Part B premium, his/her SNAP/Food Stamps income goes up, so their SNAP/Food Stamps go down. Here are some protections. Do these individuals have to report to their SNAP worker that their out of pocket medical costs have decreased?.

And will the household see a reduction in their SNAP benefits, since the decrease in medical expenses will increase their countable income?. The good news is that MSP households do NOT have to report the decrease in their medical expenses to the SNAP/Food Stamp office until their next SNAP/Food Stamp recertification. Even if they do report the change, or the local district finds out because the same worker is handling both the MSP and SNAP case, there should be no reduction in the householdâs benefit until the next recertification.

Eventually, though, the decrease in medical expenses will need to be reported when the household recertifies for SNAP, and the household should expect to see a decrease in their monthly SNAP benefit. It is really important to stress that the loss in SNAP benefits is NOT dollar for dollar. A $100 decrease in out of pocket medical expenses would translate roughly into a $30 drop in SNAP benefits.

See more info on SNAP/Food Stamp benefits by the Empire Justice Center, and on the State OTDA website. Some clients will be automatically enrolled in an MSP by the New York State Department of Health (NYSDOH) shortly after attaining eligibility for Medicare. Others need to apply.

The 2010 "MIPPA" law introduced some improvements to increase MSP enrollment. See 3rd bullet below. Also, some people who had Medicaid through the Affordable Care Act before they became eligible for Medicare have special procedures to have their Part B premium paid before they enroll in an MSP.

They should receive Medicare Parts A and B. Clients who are already eligible for Medicare when they apply for Medicaid should be automatically assessed for MSP eligibility when they apply for Medicaid. (NYS DOH 2000-ADM-7 and GIS 05 MA 033).

Clients who apply to the Social Security Administration for Extra Help, but are rejected, should be contacted &. Enrolled into an MSP by the Medicaid program directly under new MIPPA procedures that require data sharing. Strategy TIP.

Since the Extra Help filing date will be assigned to the MSP application, it may help the client to apply online for Extra Help with the SSA, even knowing that this application will be rejected because of excess assets or other reason. SSA processes these requests quickly, and it will be routed to the State for MSP processing. Since MSP applications take a while, at least the filing date will be retroactive.

APPLYING FOR MSP DIRECTLY WITH LOCAL MEDICAID OFFICE Client already has Medicaid with Local District/HRA but not MSP. They should NOT have to submit an MSP application because the local district is required to review all Medicaid recipients for MSP eligibility and enroll them. (NYS DOH 2000-ADM-7 and GIS 05 MA 033).

But if a Medicaid recipient does not have MSP, contact the Local Medicaid office and request that they be enrolled. In NYC - Use Form 751W and check the box on page 2 requesting evaluation for Medicare Savings Program. Fax it to the Undercare Division at 1-917-639-0837 or email it to undercareproviderrelations@hra.nyc.gov.

Use by secure email. If enrolling in the MSP will cause a Spenddown (because income will increase by the amount of the Part B premium, include a completed and signed "Choice Notice" (MAP-3054a)(3/19/2019)(You must adapt this notice - generally check box 3B on page 2 to select enrollment in MSP while keeping Medicaid.) If do not have Medicaid -- must apply for an MSP through their local social services district. (See more in Section D.

Either application form can be mailed in -- there is no interview requirement anymore for MSP or Medicaid. See 10 ADM-04. Applicants will need to submit proof of income, a copy of their Medicare card (front &.

Back), and proof of residency/address. See the application form for other instructions. One who is only eligible for QI-1 because of higher income may ONLY apply for an MSP, not for Medicaid too.

One may not receive Medicaid and QI-1 at the same time. If someone only eligible for QI-1 wants Medicaid, s/he may enroll in and deposit excess income into a pooled Supplemental Needs Trust, to bring her countable income down to the Medicaid level, which also qualifies him or her for SLIMB or QMB instead of QI-1. Advocates in NYC can sign up for a half-day "Deputization Training" conducted by the Medicare Rights Center, at which you'll be trained and authorized to complete an MSP application and to submit it via the Medicare Rights Center, which submits it to HRA without the client having to apply in person.

NYS DOH 2000-ADM-7 Individuals can also affirmatively ask to be enrolled in MSP in between recertification periods. Individuals who are eligible for Medicaid with a spenddown can opt whether or not to receive MSP. (Medicaid Reference Guide (MRG) p.

19). Obtaining MSP may increase their spenddown. IF CLIENT HAD MEDICAID ON THE MARKETPLACE (NYS of Health Exchange) before obtaining Medicare - See article about the Medicare Insurance Payment Program (MIPP).

IF CLIENT HAD MEDICAID THROUGH LOCAL DISTRICT - see here, same procedure for any Medicaid recipient who needs MSP. MIPPA - Under MIPPA, the SSA sends a form letter to people who may be eligible for a Medicare Savings Program or Extra Help (Low Income Subsidy - LIS) that they may apply. The letters are.

This guide explains the various steps in "conditionally enrolling" in Part A at the SSA office, which must be done before applying for QMB at the Medicaid office, which will then pay the Part A premium. See also GIS 04 MA/013. In June, 2018, the SSA revised the POMS manual procedures for the Part A Buy-In to to address inconsistencies and confusion in SSA field offices and help smooth the path for QMB enrollment.

The procedures are in the POMS Section HI 00801.140 "Premium-Free Part A Enrollments for Qualified Medicare BenefiIaries." It includes important clarifications, such as. SSA Field Offices should explain the QMB program and conditional enrollment process if an individual lacks premium-free Part A and appears to meet QMB requirements. SSA field offices can add notes to the âRemarksâ section of the application and provide a screen shot to the individual so the individual can provide proof of conditional Part A enrollment when applying for QMB through the state Medicaid program.

Beneficiaries are allowed to complete the conditional application even if they owe Medicare premiums. In Part A Buy-in states like NYS, SSA should process conditional applications on a rolling basis (without regard to enrollment periods), even if the application coincides with the General Enrollment Period. (The General Enrollment Period is from Jan 1 to March 31st every year, in which anyone eligible may enroll in Medicare Part A or Part B to be effective on July 1st).

SSA also refunds any amounts owed to the recipient. (Note. This process can take awhile!.

!. !. ) CMS âdeemsâ the MSP recipient eligible for Part D Extra Help/ Low Income Subsidy (LIS).

âCan the MSP be retroactive like Medicaid, back to 3 months before the application?. âThe answer is different for the 3 MSP programs. QMB -No Retroactive Eligibility â Benefits begin the month after the month of the MSP application.

7. QMBs -Special Rules on Cost-Sharing. QMB is the only MSP program which pays not only the Part B premium, but also the Medicare co-insurance.

However, there are limitations. First, co-insurance will only be paid if the provide accepts Medicaid.

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IntroductionTracing the implications what is kamagra 100mg of developments within 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 what is kamagra 100mg particularly be seen in the establishment 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 what is kamagra 100mg individual gene offers new diagnostic 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 what is kamagra 100mg expectations, 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 what is kamagra 100mg 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 et al what is kamagra 100mg. (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 what is kamagra 100mg result, we are less aware of how families see the impact 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 what is kamagra 100mg 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 what is kamagra 100mg 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, 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 what is kamagra 100mg 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 what is kamagra 100mg and (re)present the experiences 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 experiences and what is kamagra 100mg 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 what is kamagra 100mg 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 what is kamagra 100mg as a method remains underused and is âis largely confined to those 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 what is kamagra 100mg 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 what is kamagra 100mg 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 what is kamagra 100mg. 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 what is kamagra 100mg 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 what is kamagra 100mg 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 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 form and what is kamagra 100mg 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 conflict with, and challenging what is kamagra 100mg 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 what is kamagra 100mg as a method of inquiry raises the possibility for âproducing different knowledge and producing knowledge differentlyâ (St. Pierre 1997, 175). Writing creates a very different modality of representation what is kamagra 100mg. 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 longer being done what is kamagra 100mg 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 what is kamagra 100mg 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 social science that prioritise and privilege the immediacy and synchronicity what is kamagra 100mg 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 what is kamagra 100mg 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 what is kamagra 100mg imposition of 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 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 what is kamagra 100mg 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 less influenced by the mediating effects what is kamagra 100mg 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 what is kamagra 100mg 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 oral research practices, but rather to recognise what is kamagra 100mg 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 (Phillips and Kara 2021) what is kamagra 100mg.

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 what is kamagra 100mg 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 what is kamagra 100mg 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 what is kamagra 100mg such experiencesâparticularly in a fully participatory vein (though 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 what is kamagra 100mg writing exercises have a therapeutic component (by design, intention or as a predictable but 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 what is kamagra 100mg 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, âcreative writing is not what is kamagra 100mg 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 what is kamagra 100mg and McNicol (2021, 86) suggest rather than an imposition of what writing should be, there are ways of working that can 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 what is kamagra 100mg 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 one of the benefits brought what is kamagra 100mg 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 what is kamagra 100mg asking 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 (Andrews what is kamagra 100mg 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 what is kamagra 100mg in clinical genomics 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 what is kamagra 100mg 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 what is kamagra 100mg to develop relationships with participants, build 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 what is kamagra 100mg experience of genomics and the active enrolment of 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 what is kamagra 100mg the availability of people with often complex caring responsibilities (particularly during erectile dysfunction treatment). 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 erectile dysfunction treatment 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 what is kamagra 100mg (and reading othersâ stories), people would be brushing up 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 what is kamagra 100mg 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 what is kamagra 100mg served 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 from mid-30s to what is kamagra 100mg 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 what is kamagra 100mg 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 what is kamagra 100mg 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 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, to share their what is kamagra 100mg 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 what is kamagra 100mg 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, 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 what is kamagra 100mg 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 what is kamagra 100mg 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 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 what is kamagra 100mg could 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, what is kamagra 100mg 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 what is kamagra 100mg 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 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 is at stake in a story as what is kamagra 100mg 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 recount the stories that were of what is kamagra 100mg 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 what is kamagra 100mg âoutside of the 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 what is kamagra 100mg âeveryday lifeâ allows a focus on those practices and aspects of 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, 97), what is kamagra 100mg 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 left overâ is an important effort what is kamagra 100mg 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 that âa sound appreciation of everyday what is kamagra 100mg 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 had to change anything, after the first what is kamagra 100mg 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 went what is kamagra 100mg 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 what is kamagra 100mg author of 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 emotional complexity of being part of a what is kamagra 100mg 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 the written pieces that our participants produced what is kamagra 100mg. 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 for acts of interpretation to render their writing as something what is kamagra 100mg 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 what is kamagra 100mg 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 what is kamagra 100mg awareness of space and environment. The use of language, metaphors and similes. The lack what is kamagra 100mg of 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 what is kamagra 100mg in general) are well 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 your worldâs worst plausible what is kamagra 100mg 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 what is kamagra 100mg the stuff like, âOh, 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 about what is kamagra 100mg 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 genome hadnât been sequenced so itâs all happened in what is kamagra 100mg 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 what is kamagra 100mg 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 what is kamagra 100mg 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 of what is kamagra 100mg 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 what is kamagra 100mg 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 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 what is kamagra 100mg 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 get the opportunity to voice in other what is kamagra 100mg (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 what is kamagra 100mg 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 conditions, these pieces can draw attention to how such multiple aspects of everyday what is kamagra 100mg 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 concern in the what is kamagra 100mg 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 kamagra 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 what is kamagra 100mg lens of 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 what is kamagra 100mg 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 of their lives and experiences that exceeded what could what is kamagra 100mg 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 what is kamagra 100mg 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 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 what is kamagra 100mg 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, what is kamagra 100mg the 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 story must be considered as a what is kamagra 100mg whole. Methods that fragment stories serve other purposesâ.

Herein lies one of what is kamagra 100mg the challenges of participatory-writing, in 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 mindful, what is kamagra 100mg 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 what is kamagra 100mg feel if this was out there?. Writing brings with it a greater sense of permeance and mobility. It produces a what is kamagra 100mg record in ways different to 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 that participants reflected on how writing had, as a method, both encouraged and enabled them to detail aspects what is kamagra 100mg 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 what is kamagra 100mg 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, what is kamagra 100mg it was particularly the 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 what is kamagra 100mg was also an approach which our participants valued 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 what is kamagra 100mg to navigate and negotiate 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 what is kamagra 100mg 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 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 giving what is kamagra 100mg 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 what is kamagra 100mg enabled to claim an ownership and validity to their representations of 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 what is kamagra 100mg commented, 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 what is kamagra 100mg is absent from 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 produced through our writing groups provide a window into the worlds of genomic medicine, what is kamagra 100mg 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, the joys, the normality, the forgettability, the not-quite-all-consuming what is kamagra 100mg 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 al what is kamagra 100mg. (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 what is kamagra 100mg that 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 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 what is kamagra 100mg 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 before taking part.AcknowledgmentsThe authors thank the peer reviewers and editors, who provided what is kamagra 100mg 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) what is kamagra 100mg. 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) what is kamagra 100mg 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 http://facummings.com/?page_id=2 implications of developments within genetic science has become a major area of research and debate within kamagra online next day delivery 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 a âgenomics agendaâ within public health institutions kamagra online next day delivery (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 kamagra online next day delivery the individual gene offers new diagnostic 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 kamagra online next day delivery 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 kamagra online next day delivery 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 kamagra online next day delivery 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 on their lives kamagra online next day delivery 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 kamagra online next day delivery 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 way that empowers âvoices at the margins so that they may help craft creative options kamagra online next day delivery 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 kamagra online next day delivery 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 kamagra online next day delivery the experiences 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 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, kamagra online next day delivery 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 kamagra online next day delivery 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 kamagra online next day delivery writing as a method remains underused and is âis largely confined to those 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, kamagra online next day delivery 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 staple kamagra online next day delivery 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 kamagra online next day delivery St. 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 writing about kamagra online next day delivery writing as a method of inquiry, Richardson and St.

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 form and recording their experiences and thoughts (McGlacken kamagra online next day delivery 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 conflict with, and challenging to, the privileged place kamagra online next day delivery 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 a method of inquiry raises the possibility for âproducing different knowledge and producing knowledge differentlyâ (St kamagra online next day delivery. Pierre 1997, 175).

Writing creates kamagra online next day delivery 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 longer being done kamagra online next day delivery 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 kamagra online next day delivery 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 social science that prioritise and privilege the immediacy and synchronicity of kamagra online next day delivery 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 hard to reach by virtue of their personal or sensitive nature (Phillips and Kara kamagra online next day delivery 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 kamagra online next day delivery to assume that only through the imposition of 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 their social milieu and the way in kamagra online next day delivery 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.

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 Kara 2021) kamagra online next day delivery. 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 oral research practices, but rather to recognise kamagra online next day delivery 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 kamagra online next day delivery methods, participatory-writing has its time and 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 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 kamagra online next day delivery (Elizabeth 2008. Pennebaker and Chung 2007. Peterkin and Prettyman 2009 kamagra online next day delivery.

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 kamagra online next day delivery or as a predictable but 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 kamagra online next day delivery 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 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) kamagra online next day delivery poignantly note, 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 kamagra online next day delivery rather than an imposition of what writing should be, there are ways of working that can 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 of anonymity for the authors involved kamagra online next day delivery. 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 kamagra online next day delivery 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 kamagra online next day delivery prior to asking 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 kamagra online next day delivery 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 kamagra online next day delivery relevant issues as they occur in clinical genomics 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 of kamagra online next day delivery 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.

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 kamagra online next day delivery 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 kamagra online next day delivery erectile dysfunction treatment). 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 erectile dysfunction treatment 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 kamagra online next day delivery 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 kamagra online next day delivery involved in 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 kamagra online next day delivery ethical and governance panels relating to genomics or who were active in patient led organisations.

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 kamagra online next day delivery participating in large 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 to a given prompt (such as telling kamagra online next day delivery 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 kamagra online next day delivery invited, but never 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 kamagra online next day delivery life-writing tutor, and the first author (RG), 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 kamagra online next day delivery 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 kamagra online next day delivery 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 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 chosen to use kamagra online next day delivery 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, kamagra online next day delivery 2012).

Such an who can buy kamagra 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 kamagra online next day delivery 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 kamagra online next day delivery speak with a research 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.

As Prainsack, Schicktanz, and kamagra online next day delivery Werner-Felmayer (2014, 11) argue, genetics takes place âoutside of the 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 life that are hidden by dominant narratives (Highmore kamagra online next day delivery 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 kamagra online next day delivery (1991, 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 left overâ is kamagra online next day delivery 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) kamagra online next day delivery 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 kamagra online next day delivery it was, and I 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 went âWhoa? kamagra online next day delivery. 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 kamagra online next day delivery author of 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 emotional complexity of being part of a kamagra online next day delivery 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 the written pieces that our participants kamagra online next day delivery 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 kamagra online next day delivery 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 2016) can be produced in part by this kamagra online next day delivery 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 kamagra online next day delivery of space and environment.

The use of language, metaphors and similes. The lack of attention to important personal information kamagra online next day delivery (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 kamagra online next day delivery (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 your kamagra online next day delivery 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, kamagra online next day delivery 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 kamagra online next day delivery 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 learnt my genetics the human genome hadnât been sequenced kamagra online next day delivery 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 kamagra online next day delivery 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 kamagra online next day delivery a 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 kamagra online next day delivery 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 extrinsic value, but struggled to square that with the way in which they wanted to tell their own stories and kamagra online next day delivery 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 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 kamagra online next day delivery 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 kamagra online next day delivery 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 kamagra online next day delivery 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 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 conditions, these pieces kamagra online next day delivery 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 concern in the back of kamagra online next day delivery your mind.

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 kamagra online next day delivery anything else kind 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 kamagra online next day delivery way to represent aspects 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 was kamagra online next day delivery 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 to reflecting on the value that writing has had here, as a qualitative method, and how it has allowed kamagra online next day delivery 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, the kamagra online next day delivery 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 kamagra online next day delivery Frank (2012, 36), âeach 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 kamagra online next day delivery 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 kamagra online next day delivery 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 mindful, who is reading this?.

How can this come back in the future?. How would that get back?. How would I feel kamagra online next day delivery 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 kamagra online next day delivery ways different to 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.

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 kamagra online next day delivery 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 kamagra online next day delivery 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 kamagra online next day delivery participants valued 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 kamagra online next day delivery different [â¦] in terms of the idea of a revelation and feeling things.Writing provided a way for participants to navigate and negotiate 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 kamagra online next day delivery quickly became apparent that reading other peopleâs writing was powerful and rewarding for other families affected by rare conditions too.I think being able to connect to what other people were saying.

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 kamagra online next day delivery validity to their representations of 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, ânobody kamagra online next day delivery 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 kamagra online next day delivery is absent from 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 produced through our writing groups provide a window into the worlds of genomic medicine, the worlds outside of kamagra online next day delivery 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, the joys, the normality, the forgettability, the not-quite-all-consuming nature of rare conditions, and the opportunities that families find to resist a kamagra online next day delivery 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 al kamagra online next day delivery. (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 kamagra online next day delivery those that 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 emotional nature of the qualitative data generated, and in order to respect kamagra online next day delivery 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 before taking part.AcknowledgmentsThe authors kamagra online next day delivery 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) kamagra online next day delivery. 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..

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New York state officials are urging residents to kamagra online next day delivery prepare as a winter storm is expected to bring snow and freezing rain to parts of the state.The storm is set to impact the region beginning the night of Thursday, Feb. 3, through kamagra online next day delivery Friday, Feb. 4. Gov.

Kathy Hochul said the Hudson Valley and downstate regions are expected to see freezing rain and icy conditions. She said parts of the Hudson Valley region may receive up to four inches of snow and up to two-tenths of an inch of ice.Parts of Central New York, the Southern Tier and the Finger Lakes could receive as much as 18 inches of snow, officials said. "State agencies involved in emergency response are prepared and ready to deploy additional assets to assist local governments," Hochul said. "Roads could be hazardous, so I encourage New Yorkers to avoid unnecessary travel and pay attention to your local forecasts until the storm passes."Officials said power outages are possible and travel may be hazardous at times during the evening commute on Thursday and both the morning and evening commutes on Friday.Hochul said New Yorkers should avoid unnecessary travel.She added that state agencies, including the Department of Transportation, Thruway Authority, New York State Police and more have made storm-response preparations.Officials also recommended the following tips for safe driving:When winter storms strike, do not drive unless necessary.Use caution on bridges as ice can form quicker than on roads.Wet leaves on roadways can cause slippery conditions, making it important to drive at slower speeds when approaching patches of them.Make sure your car is stocked with blankets, a shovel, flashlight and extra batteries, extra warm clothing, set of tire chains, battery booster cables, quick-energy foods and brightly colored cloth to use as a distress flag.Keep your gas tank full to prevent gasoline freeze-up.If you have a cell phone or two-way radio available for your use, keep the battery charged and keep it with you whenever traveling.

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