Allison Kabel

Taking pictures to take control: Photovoice as a tool to facilitate empowerment among poor and racial/ethnic minority women with HIV.

&NA; Poor and racial/ethnic minority women comprise the majority of women living with HIV (WLH) in the United States. Race, gender, class, and HIV‐based stigmas and inequities limit womens powers over their health and compromise their quality of life. To help WLH counter this powerlessness, we implemented a Photovoice project, called Picturing New Possibilities (PNP), and explored how women experienced empowerment through Photovoice. PNP participants (n = 30) photographed their life experiences, attended 3 group discussions and a community exhibit of their photos, and completed a follow‐up interview. We used strategies of Grounded Theory to identify key empowerment themes. Participants described empowerment through enhanced self‐esteem, self‐confidence, critical thinking skills, and control. Our findings suggest that Photovoice is an important tool for WLH. It offers women a way to access internal strengths and use these resources to improve their quality of life and health.

Apparel-related participation barriers: ability, adaptation and engagement

Abstract Purpose: To document apparel-related barriers faced by people with disabilities (PWD) and their families as they attempted to engage in various aspects of social participation, and explore the often invisible relationship between apparel-related barriers and disablement. Method: For this qualitative research, we used focus groups to interview PWD, their caregivers and/or parents and health providers to document the experience of apparel-related barriers to community or social participation. A constructivist grounded theory approach was used to analyse interview transcripts and noted. Results: Participant’s responses were grouped into categories of unmet need for adaptive apparel as well as a list of specific apparel-related barriers that participants struggled to navigate in daily life; including functional, cultural and sensory-based issues. Conclusions: The lack of adequate accessible apparel for PWD exacerbated barriers to community participation and disablement, and identified the need for innovation in design, production, distribution and sale, of adaptive clothing. Implications for Rehabilitation The lack of adaptive or appropriate clothing or apparel for people living with disabilities can become a barrier, preventing engagement in meaningful activities, yet these barriers are not often explicitly identified. Cultural issues regarding clothing and the process of dressing may become unspoken barriers to engagement in meaningful activities, impacting the way care services are assigned. Rehabilitation professionals may need to take clothing and apparel-related issues faced by their clients into account, so that opportunities for social participation can be maximised.

The Snog and Grog Club Social Personhood in Hospice Care

The popularity of British hospice day care signals the expanding boundaries of palliative care beyond end-stage illness. In this article, I examine the ways hospice philosophy was interpreted and implemented in an outpatient day therapy setting run by a multidisciplinary team of health professionals. Findings suggest that hospice day care staff members used several strategies to help patients cope and retain a sense of personhood while facing numerous emotional and physical challenges associated with life-threatening illness. Health professionals in the United States will need to prepare for patients accessing hospice and palliative care services earlier in the illness trajectory to take advantage of these opportunities for patient support and advocacy.

Clothing-related barriers experienced by people with mobility disabilities and impairments

Clothing-related issues can create barriers to social participation and other desired activities for people living with disabilities and their families. The purpose of this study was to identify clothing-related barriers people living with disabilities and their families are facing. An online survey was administered to people living with disabilities and parents/caregivers, resulting in a sample of 113 participants indicating mobility impairments. Survey results indicated that the clothing needs of people living with disabilities and impairments are not being met, the lack of appropriate clothing prevented individuals from fully engaging in social activities and relationships, employment or everyday life events. The design fields and apparel industry could play a vital role in helping people with mobility disabilities navigate these barriers.

Osteoarthritis and Social Embarrassment

Musculoskeletal pain from osteoarthritis (OA) is a prevalent concern for older adults. Despite recommendations from providers to be physically active, some people with OA fear physical activity and must decide whether it is safe or harmful to undertake physical activity. In this article, we examined the narratives of 10 people living with OA knee pain and the roles that pain and embarrassment played in their activity-related behavior. When asked about their physical activity, 6 of the 10 participants reported some type of embarrassment-related experience. Responses fell into two key categories: (a) embarrassment-related experience from engaging in activity or (b) embarrassment-related experience from avoiding activity. These categories contained subgroups of those seeking to avoid embarrassment and those seeking to avoid pain. Response clusters helped to contextualize the activity behavior of people with knee OA pain as it relates to social identity by providing examples of individuals resisting life disruption.

Portraits of Well-Being: Photography as a Mental Health Support for Women With HIV

ABSTRACT Many women living with HIV/AIDS (WL-HIV/AIDS) experience significant mental distress. Although creative arts strategies are well positioned to help support women by inspiring creativity and meaning-making, few arts programs have been implemented and evaluated with this population. The authors conducted a photography project with 30 WL-HIV/AIDS from three United States cities. Participants took pictures to capture their lives with HIV/AIDS and described their photos and stories in group and individual sessions. Using thematic analysis, the authors identified that the project supported women’s mental health in four ways by facilitating empowerment and helping women to express themselves, address their mental health with new tools like photography, and process past traumas. Photography projects may help WL-HIV/AIDS understand and manage their mental health.

Whose mammogram is this anyway? Perspectives on technology, breast health and mammography

ABSTRACT There is an increasing demand to ensure that emerging health technologies are patient-centred. Yet, understanding what constitutes patient-centredness can be a complex task, particularly in relation to screening technologies, where lack of patient-centred design can result in decreased compliance with screening recommendations. This holds true for breast cancer screening, where nearly 80% of women do not comply with screening mammography recommendations. To support patient-centred design of breast screening systems, semi-structured interviews were conducted with participants who could provide diverse perspectives on breast screening, including mammographers, breast cancer survivors, and self-identified mammography avoiders. Interviews explored opinions and attitudes surrounding current screening technology and systems, and ways in which screening might be conducted in the future. Using an inductive, constructivist approach, we identified several themes that should be considered when designing breast screening technology and systems. Concerns regarding the current processes and needs for support in relation to self-advocacy were revealed. Interest in improved technology was wide-spread, but feelings of inadequacy limited acceptance of self-screening designs. This study showcased the opportunities for design scholarship to improve the breast cancer screening process and, potentially enhance the patient–provider relationship.

The art of resilience: photo-stories of inspiration and strength among people with HIV/AIDS

Using the visual arts to aid healing is a common therapy for people with critical illness, yet the use of art to improve the lives of people with HIV is under-utilised. Eight male and 20 female participants living with HIV in urban areas of the Midwest, United States, participated in three group photovoice photo-sharing and discussion sessions, post-project individual interviews and a community photo exhibit. We used a grounded theory approach to analyse interview data and identified three key themes: (1) health and wellness, (2) fear and stigma and (3) restoring a threatened identity. Participants identified how taking photos, reflecting on and sharing them in focus groups helped them express themselves while living with and coping with HIV. Offering photography as form of expression is a way to foster strength and, consequently, improve the lives of people living with HIV. Our participants benefitted from the process of telling their story with images. They were able to express positive aspects of their lives which could be a healthy form of catharsis in and of itself. Future research should continue to investigate how participants in participatory approaches like photovoice actually do benefit from the research. Although we focused this analysis on resilience, photovoice is flexible and participants’ responses to it are varied. Additional outcomes such as impact on mental and physical health are worthy of additional exploration.

Fighting for wellness: strategies of mid-to-older women living with cancer.

A significant portion of older adult cancer patients are using complementary and alternative medicine (CAM ) during and after treatment. I used four case studies to examine the strategies of older adult CAM-using cancer patients to maintain a sense of well-being as they transitioned to a post-treatment phase of life. Data were collected via qualitative interviews. Findings included strategies for financing CAM treatments, dealing with life disruption, and managing the complete nutritional overhaul recommended by their program. Participants worked to achieve new lifestyles and senses of wellness, finding ways to pay for expensive, out-of-pocket care while still meeting family obligations. These findings shed light on assumptions about older adult health-seeking behaviors, culturally embedded life course expectations, and raised questions about how the pursuit of health activities involving boundary crossings are received.