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- Continuum of Care (2)
- Patient and Family Partnership (and Engagement) (2)
- Perceptions (2)
- Person-Centeredness (2)
- Qualitative methods (2)
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- Adherence (1)
- Aging (1)
- Caregiver (1)
- Caregiver burden (1)
- Chronic illness (1)
- Cystic Fibrosis (1)
- Cystic fibrosis (1)
- Illness management (1)
- Informal care (1)
- Integrated Nature (1)
- Kidney disease (1)
- Narrative research (1)
- Online health information (1)
- Patient experience (1)
- Patient narratives (1)
- Patient-centered research (1)
- Video intervention/prevention assessment (via) (1)
- Video recording (1)
Articles 1 - 3 of 3
Full-Text Articles in Medicine and Health
Original Parts: Aging And Reckoning With Cystic Fibrosis Related Kidney Disease, Alexandra Ch Nowakowski
Original Parts: Aging And Reckoning With Cystic Fibrosis Related Kidney Disease, Alexandra Ch Nowakowski
Patient Experience Journal
Kidney disease increasingly impacts people with cystic fibrosis (CF) as adult patients continue to survive longer. Yet the literature on CF related kidney disease focuses little on amplifying the voices of people aging with the condition. This article presents perspectives on CF related kidney disease from a medical sociologist who is themselves managing these issues. It (1) gives an overview of relevant literature and trends in epidemiological data on kidney disease and CF, (2) details the author’s own process of adjusting to progressive changes in renal function, and (3) outlines opportunities for clinicians to make a positive impact for patients …
When One Is Sick And Two Need Help: Caregivers’ Perspectives On The Negative Consequences Of Caring, Ilja Ormel, Susan Law, Courtney Abbott, Mark Yaffe, Marc Saint-Cyr, Kerry Kuluski, Debbie Josephson, Ann C. Macaulay
When One Is Sick And Two Need Help: Caregivers’ Perspectives On The Negative Consequences Of Caring, Ilja Ormel, Susan Law, Courtney Abbott, Mark Yaffe, Marc Saint-Cyr, Kerry Kuluski, Debbie Josephson, Ann C. Macaulay
Patient Experience Journal
Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs – often due to the negative consequences of caregiving. Learning about the diversity of others’ experiences can positively influence personal decision-making, reduce feelings of isolation, as well as promote adjustment to a personal situation. For caregivers, however, few resources exist that provide reliable information on others’ experiences. We collected the narratives of caregivers’ experiences of caring for someone with a …
Hearing The Patient Voice: Using Video Intervention/Prevention Assessment To Understand Teens With Cystic Fibrosis, Susan Horky Lscw, Laura E. Sherman Msw, Julie Polvinen, Michael Rich Md
Hearing The Patient Voice: Using Video Intervention/Prevention Assessment To Understand Teens With Cystic Fibrosis, Susan Horky Lscw, Laura E. Sherman Msw, Julie Polvinen, Michael Rich Md
Patient Experience Journal
This qualitative study asked two questions: 1) How do teens with cystic fibrosis (CF) feel about their treatments; and 2) What factors lead teens to adhere, or not adhere, to treatments. To answer these questions we used an innovative approach (Video Intervention/Prevention Assessment or VIA), to learn about the experiences of teens with CF. We loaned video camcorders to teens with CF and asked them to create visual narratives of their lives. Researchers logged and coded videotapes, identifying themes that arose from the material. A primary theme was “Doctors don’t understand.” Participants also highlighted the value of routines and parental …