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Qualitative longitudinal study of episodic disability experiences of older women living with HIV in Ontario, Canada.

ABSTRACT: OBJECTIVES:To examine the episodic disability experiences of older women living with HIV over time. DESIGN:Qualitative longitudinal study, conducting semistructured in-depth interviews on four occasions over a 20-month time frame. Inductive thematic analyses were conducted cross-sectionally and longitudinally. SETTING:Participants were recruited from HIV community organisations in Canada. PARTICIPANTS:10 women aged 50 years or older living with HIV for more than 6 years. RESULTS:Two major themes related to the episodic nature of the women's disability. Women were living with multiple and complex sources of uncertainty over time including: unpredictable health challenges, worrying about cognition, unreliable weather, fearing stigma and the effects of disclosure, maintaining housing and adequate finances, and fulfilling gendered and family roles. Women describe strategies to deal with uncertainty over time including withdrawing and limiting activities and participation and engaging in meaningful activities. CONCLUSIONS:This longitudinal study highlighted the disabling effects of HIV over time in which unpredictable fluctuations in illness and health resulted in uncertainty and worrying about the future. Environmental factors, such as stigma and weather, may put older women living with HIV at a greater risk for social isolation. Strategies to promote dealing with uncertainty and building resilience are warranted.

SUBMITTER: Solomon P

PROVIDER: S-EPMC5914902 | biostudies-other | 2018 Apr

REPOSITORIES: biostudies-other

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Qualitative longitudinal study of episodic disability experiences of older women living with HIV in Ontario, Canada.

Solomon Patricia P O'Brien Kelly K KK Nixon Stephanie S Letts Lori L Baxter Larry L Gervais Nicole N

BMJ open 20180420 4

<h4>Objectives</h4>To examine the episodic disability experiences of older women living with HIV over time.<h4>Design</h4>Qualitative longitudinal study, conducting semistructured in-depth interviews on four occasions over a 20-month time frame. Inductive thematic analyses were conducted cross-sectionally and longitudinally.<h4>Setting</h4>Participants were recruited from HIV community organisations in Canada.<h4>Participants</h4>10 women aged 50 years or older living with HIV for more than 6 ye ...[more]

PMID: 29678993

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Project description:ObjectivesOf the 6.2 million Canadians aged 15 years or older who live with disability, 61% have disabilities that are not static or continuous. These dynamic conditions are known as episodic disabilities and many disproportionately experienced by women. Chronic pain is also a common feature associated with many episodic disabilities. The purpose of this article is to explore the experience of chronic pain for women living with episodic disabilities.MethodsThis qualitative study draws on the tenets of interpretive description. Thirty women, with one or more episodic disabilities and chronic pain, participated in a semi-structured interview and answered questions about their chronic pain levels, using Von Korff et al.'s graded chronic pain scale.ResultsWomen experienced gendered treatment within the healthcare system and reported that they were frequently dismissed by their healthcare providers, most often physicians. Healthcare professionals' practices around pain assessment were another common challenge for women. Women who were able to access financial support from government disability programs were more likely to access allied health professionals. Many of the holistic strategies that women researched and used to treat chronic pain were self-enacted. While diet, exercise, and other self-care activities are general health promotion strategies for all, they were seen as essential aspects of living that helped women have control over chronic pain and modifying the course of their episodic disability.ConclusionLiving with chronic pain and an episodic disability is complex. The findings of this study present the impact that gendered treatment in the healthcare system has on women who live with an episodic disability and experience chronic pain. It is evident that the current system did not meet the needs of the women in our study and system changes could result in better experiences, more disclosure of alternative therapies, and increase women's agency in their care.

Project description:BackgroundThe Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV.MethodsWe conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity).ResultsThree hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed.ConclusionsThe EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.

Project description:OBJECTIVES:The experiences of people who report cost-related medicine non-adherence are not well documented. We aimed to present experiences relating to accessing medicines reported by the participants in a randomised controlled trial of free medicine distribution. METHODS:The trial consisted of primary care patients from a large urban family practice and three rural family practices who reported cost-related medicine non-adherence. Participants were randomly allocated to continue their poor access (control) or to receive free and easily accessible medicines (intervention). As part of data collection for the first year of the trial, participants were asked closed and open-ended questions to assess their adherence to medication, health outcomes and their experiences in relation to medicine accessibility. We conducted a qualitative concept mapping study in which we analysed and summarised participants' responses to the open-ended question on a concept map to visually present their experiences relating to accessing medicines. RESULTS:Of the 524 trial participants contacted, 198 (38%) responded to the open-ended question. The concept map contains clusters that represent eight types of experiences of participants related to medicine access including stress, relationship with doctor, health impact, quality of life, sacrificing other essentials, medicines are expensive, financial impact and adherence. These experiences fall under two major themes, experiences relating to personal finances and experiences relating to well-being, which are bridged by a central cluster of adherence. CONCLUSIONS:The experiences shared by the participants demonstrate that access to medicines impacts people's finances and well-being as well as their adherence to prescribed medicines. These results indicate that effects on personal finances and general well-being should be measured for interventions and policy changes aimed at improving medicine access. TRIAL REGISTRATION NUMBER:This article is linked to the Carefully Selected and Easily Accessible at No Charge Medicines (CLEAN Meds) randomised controlled trial (trial registration number: NCT02744963).

Project description:BackgroundPerinatal health-seeking behaviours are influenced by various factors, including personal beliefs. South Asian women, who often live within a wide kinship system, can be influenced by the advice and guidance of their mothers and/or mothers-in-law.MethodsTo explore the cultural health perceptions of South Asian grandmothers within this context, we used constructivist grounded theory to sample and interview 17 South Asian grandmothers who reside in Southern Ontario, Canada. Interviews were audio-recorded, transcribed verbatim, and coded/analyzed by three independent coders.ResultsMany grandmothers emphasized that the preconception phase should focus on building healthy habits around nutrition, physical activity, and mental wellness; the pregnancy period should encompass an enriched environment (positive relationships, healthy routines, nutritional enhancement); and the postpartum phase should emphasize healing and restoration for both the mother and newborn (self-care, bonding, rebuilding healthy habits). Many of the grandmothers conceptualized these stages as a cyclical relationship where healing and restoration transitions gradually to re-establishing healthy habits before having a subsequent child. They also expressed responsibility in supporting their daughters and/or daughters-in-law with their family units and encouraging the transfer of perinatal health information.ConclusionsSouth Asian grandmothers are involved in supporting the family units of their children and involving them in perinatal health programming can be an effective way to translate health knowledge to South Asian women. Video abstract. In order to impact a broad, diverse audience of community members, we collaborated with a South Asian film-maker to distil the research findings, write an impactful script, and produce a short digital story based on the research findings. Currently available on social media (https://www.youtube.com/watch?v=tjcNUVOwatU), the film was celebrated with a CIHR Institute for Human Development, Child and Youth Health Video Talks Prize in 2016.

Project description:BackgroundThere is limited evidence on the protective effect of housing modifications on disability outcomes among older adults. We examined whether external and internal housing modifications reduce the risk of a range of disability outcomes among older adults living in England.MethodsWe analysed adults aged 60 and over from the English Longitudinal Study of Ageing, initially recruited in 2002/03. The longitudinal sample consisted of 32,126 repeated observations from 10,459 individuals across 6 waves with an average follow-up of 11·3 years. Participants were asked if their homes had external (widened doorways, ramps, automatic doors, parking and lift) and internal (rails, bathroom/kitchen modifications, chair lift) housing modifications. Mobility impairment was measured through reported difficulties in 10 activities including walking, climbing, getting up, reaching and lifting. Five disability outcomes were analysed (falls in the previous two years, pain, poor self-rated health, no social activities, and moving home within next two years) using two-way fixed effect models, controlling for key risk factors for disability.FindingsGreater mobility impairments increased the probability of falls, pain and poor self-rated health although this effect was significantly moderated by external housing modifications. Among older adults with severe mobility impairments, external housing modifications reduced the probability of falls by 3% (1%-6%), pain by 6% (4%-8%), and poor health by 4% (2%-5%). Moreover, external housing modifications reduced the probability of no social activities by 6% (5%-7%) and moving home by 4% (2%-5%) even among those without any mobility impairments. Internal housing modifications had similar, but less consistent effects on the disability outcomes.InterpretationThere was strong evidence that external housing modifications protected against a range of disability outcomes. Studies on reducing disability in ageing populations need to consider the role of housing modifications as key interventions to promote healthy ageing in place.FundingEconomic and Social Research Council ES/R008930/1 and ES/S012567/1.

Dataset Information

Qualitative longitudinal study of episodic disability experiences of older women living with HIV in Ontario, Canada.

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Qualitative longitudinal study of episodic disability experiences of older women living with HIV in Ontario, Canada.

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