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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: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.

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Project description:ImportanceSevere maternal morbidity and mortality are important indicators of maternal health. Pregnancy rates are increasing in women with disabilities, but their risk of severe maternal morbidity and mortality is unknown, despite their significant social and health disparities.ObjectiveTo determine the risk of severe maternal morbidity or mortality among women with a physical, sensory, or intellectual/developmental disability compared with women without disabilities.Design, setting, and participantsThis population-based cohort study used linked health administrative data in Ontario, Canada, from 2003 to 2018. The cohort included all singleton births to women with preexisting physical, sensory, and intellectual/developmental disabilities as well as with 2 disabilities or more compared with women without a disability. Data analysis was conducted from September 2019 to September 2020.ExposuresDisabilities were identified with published algorithms applied to diagnoses in 2 physician visits or more or at least 1 emergency department visit or hospitalization.Main outcomes and measuresSevere maternal morbidity (a validated composite of 40 diagnostic and procedural indicators) or all-cause maternal mortality, arising between conception and 42 days post partum. Relative risks were adjusted for maternal age, parity, income quintile, rurality, chronic medical conditions, mental illness, and substance use disorders.ResultsThe cohort comprised women with physical disabilities (144 972 women; mean [SD] age, 29.8 [5.6] years), sensory disabilities (45 259 women; mean [SD] age, 29.1 [6.0] years), intellectual/developmental disabilities (2227 women; mean [SD] age, 26.1 [6.4] years), and 2 or more disabilities (8883 women; mean [SD] age, 29.1 [6.1] years), and those without disabilities (1 601 363 women; mean [SD] age, 29.6 [5.4] years). The rate of severe maternal morbidity or death was 1.7% (27 242 women) in women without a disability. Compared with these women, the risk of severe maternal morbidity or death was higher in women with a physical disability (adjusted relative risk [aRR], 1.29; 95% CI, 1.25-1.34), a sensory disability (aRR, 1.14; 95% CI, 1.06-1.21), an intellectual/developmental disability (aRR, 1.57; 95% CI, 1.23-2.01), and 2 or more disabilities (aRR, 1.74; 95% CI, 1.55-1.95). Similar aRRs were observed for severe maternal morbidity or death arising in pregnancy, from birth to 42 days post partum, and from 43 to 365 days post partum. Women with disabilities were more likely than those without disabilities to experience multiple severe maternal morbidity indicators. The most prevalent indicators in all groups were intensive care unit admission, severe postpartum hemorrhage, puerperal sepsis, and severe preeclampsia.Conclusions and relevanceIn this study, women with a preexisting disability were more likely to experience severe maternal morbidity or mortality. Preconception and perinatal care provisions should be considered among women with a disability to mitigate the risk of these rare but serious outcomes.

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Dataset Information

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

Publications

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

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