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Craftivism As Inquiry: Holding Life’S Threads, Chloe Watfern, Gaynor Macdonald, Michele Elliot, Lynne Stone, Imelda Gilmore, Manuel Tecson, Najla Turk, Penny Bingham, Jane Mears, Ann Dadich, Barbara Doran, Katherine Boydell, Sarah Wallace
Craftivism As Inquiry: Holding Life’S Threads, Chloe Watfern, Gaynor Macdonald, Michele Elliot, Lynne Stone, Imelda Gilmore, Manuel Tecson, Najla Turk, Penny Bingham, Jane Mears, Ann Dadich, Barbara Doran, Katherine Boydell, Sarah Wallace
The Qualitative Report
In this article, we share insights regarding an arts-based research project where carers of people with dementia conveyed their experiences in cloth. Carers face high rates of mental ill health and burnout, while forming a largely undervalued and unrecognised workforce. Through this project, carers’ knowledge was valued and amplified using an innovative methodology – craftivism. During a series of five workshops in 2021, a small group of carers, researchers and artists gathered online to develop an exhibition of craftivist textile works. They evoked the complexity of their makers’ journeys supporting loved ones at the end of life, finding joy and …
“We Live On An Island:” Perspectives On Rural Family Caregiving For Adults With Alzheimer’S Disease And Related Dementias In The United States, Heather J. Williamson, Andria B. Begay, Dorothy J. Dunn, Rachel Bacon, Mark Remiker, Yolanda E. Garcia, Michael J. Mccarthy, Julie A. Baldwin
“We Live On An Island:” Perspectives On Rural Family Caregiving For Adults With Alzheimer’S Disease And Related Dementias In The United States, Heather J. Williamson, Andria B. Begay, Dorothy J. Dunn, Rachel Bacon, Mark Remiker, Yolanda E. Garcia, Michael J. Mccarthy, Julie A. Baldwin
The Qualitative Report
As the United States’ aging population grows, there will be increased prevalence of individuals living with Alzheimer’s Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers’ perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from …
African-American Lay Pastoral Care Facilitators’ Perspectives On Dementia Caregiver Education And Training, Nik M. Lampe, Nidhi Desai, Tomeka Norton-Brown, Alexandra C. H. Nowakowski, Robert L. Glueckauf
African-American Lay Pastoral Care Facilitators’ Perspectives On Dementia Caregiver Education And Training, Nik M. Lampe, Nidhi Desai, Tomeka Norton-Brown, Alexandra C. H. Nowakowski, Robert L. Glueckauf
The Qualitative Report
The African-American Alzheimer’s Caregiver Training and Support Project 2 (ACTS 2) is a faith-integrated, skills-training and support program for distressed African American family caregivers of persons living with dementia across Florida. Caregivers participate in a 12-week, telephone-based, skills-building and support program led by faith community workers (i.e., lay pastoral care facilitators) who provide volunteer services to their denominations. In this case study, we examined facilitators’ perspectives and recommendations for supplementary audiovisual and written training materials to optimize group process and goal-setting skills. Utilizing a qualitative approach, we explored facilitators’ needs, experiences in using current training materials, and recommendations for supplementary …
A Rapid Review Of Internet Mediated Research Methods With People With Dementia: Practical, Technical And Ethical Considerations, Tharin Phenwan Dr, Judith Sixsmith Prof, Linda Mcswiggan Dr, Deans Buchanan Dr
A Rapid Review Of Internet Mediated Research Methods With People With Dementia: Practical, Technical And Ethical Considerations, Tharin Phenwan Dr, Judith Sixsmith Prof, Linda Mcswiggan Dr, Deans Buchanan Dr
The Qualitative Report
Doing research with People with Dementia (PwD) can be challenging given that disease symptoms of anxiety, forgetfulness, and fluctuating mental capacity can make recruitment and data collection difficult. Once COVID-19 made face-to-face data collection impractical, using internet-based methods became an alternative option to continue with research. However, data collection with PwD over the internet requires strategies to observe, support, and enable them to engage with research, especially with qualitative approaches. Nine articles were selected via a decade rapid scoping review (undertaken March-June 2020) to identify qualitative online methods used with PwD and associated challenges. Methods used were online interviews, clinical …
Defying Dementia: An Exploration Of Recovery, Deb Miller, Corey W. Johnson
Defying Dementia: An Exploration Of Recovery, Deb Miller, Corey W. Johnson
The Qualitative Report
Exploring the human side of dementia helps put a face on this fast-growing affliction. This study reflects one elderly woman’s story of recovery from dementia that arose following a stroke. Painting a portrait of life with dementia can help us conceptualize the experience, how people live and how they would like to live. The woman is Marcia, my mom, and this is a qualitative inquiry with a collaborative narrative design to explore her experiences and to document my own. This study may help dementia patients and their support teams better understand the process of living with dementia and can perhaps …
Remote Monitoring Technologies In Dementia Care: An Interpretative Phenomenological Analysis Of Family Caregivers’ Experiences, Martha Snyder, Laurie Dringus, Manon Maitland Schladen, Ronald Chenail, Elizabeth Oviawe
Remote Monitoring Technologies In Dementia Care: An Interpretative Phenomenological Analysis Of Family Caregivers’ Experiences, Martha Snyder, Laurie Dringus, Manon Maitland Schladen, Ronald Chenail, Elizabeth Oviawe
The Qualitative Report
The desire to maintain an independent lifestyle is one shared by an increasing number of older adults. Adult children, spouses, siblings, and other relatives, also known as family caregivers, play an integral role in helping their loved ones maintain independence. Remote monitoring technologies (RMTs) such as wearable sensors, mobile emergency devices, smartphone apps, and webcams can be used to monitor, sense, record, and communicate a person’s daily activities. However, understanding is limited of the family caregiver’s needs and perceptions of RMTs used in a home-based setting. The purpose was to explore how family caregivers perceive RMTs and their use for …
Picturing Leisure: Using Photovoice To Understand The Experience Of Leisure And Dementia, Rebecca Genoe, Sherry Dupuis
Picturing Leisure: Using Photovoice To Understand The Experience Of Leisure And Dementia, Rebecca Genoe, Sherry Dupuis
The Qualitative Report
Interviews and participant observation are commonly used to explore the experience of dementia, yet may not adequately capture perspectives of persons with dementia as communication changes. We used photovoice (i.e., using cameras in qualitative research) along with interviews and participant observation to explore meanings of leisure for persons with dementia. We discuss our photovoice process and the challenges we encountered, including ethical concerns, difficulty using the equipment, forgetting the context of photos, and questioning self. Despite challenges, photovoice aided in cuing memory, planning for the interview, sharing stories, and capturing meaning. We recommend further exploration of photovoice with this population.
Spousal Caregiver Narratives And Credible Authority: Uncertainty In Illness Of Spousal Caregivers, Karen Sodowsky
Spousal Caregiver Narratives And Credible Authority: Uncertainty In Illness Of Spousal Caregivers, Karen Sodowsky
The Qualitative Report
This article is taken from a larger longitudinal study that used caregiver interviews, caregiver surveys, and caregiver statistical information of one community. The interviews were conducted with six spousal caregivers to examine the narratives produced by spouses actively caring for their partners with dementia. The spousal caregivers were interviewed multiple times over approximately 12 to 18 months. The author was the caregiver counselor and had worked in the community in social services for fifteen years. The narratives were analyzed using a phenomenological approach that allowed the development of descriptions of uncertainty and sharing caregiver narratives with a specialized audience. The …