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"Systems seem to ge...
"Systems seem to get in the way" : a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease
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- Coumoundouros, Chelsea (författare)
- Uppsala universitet,Hälsovetenskap och e-hälsa,Clinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom
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- Farrand, Paul (författare)
- Clinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom
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- Sanderman, Robbert (författare)
- Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands
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- von Essen, Louise (författare)
- Uppsala universitet,Hälsovetenskap och e-hälsa
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- Woodford, Joanne (författare)
- Uppsala universitet,Hälsovetenskap och e-hälsa
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(creator_code:org_t)
- BioMed Central (BMC), 2024
- 2024
- Engelska.
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Ingår i: BMC Nephrology. - : BioMed Central (BMC). - 1471-2369. ; 25:1
- Relaterad länk:
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https://doi.org/10.1...
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https://uu.diva-port... (primary) (Raw object)
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https://urn.kb.se/re...
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https://doi.org/10.1...
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Abstract
Ämnesord
Stäng
- Background: The well-being of informal caregivers of people living with chronic kidney disease is influenced by their experiences with support, however, few studies have focused on exploring these experiences. This study aimed to explore informal caregivers' experiences accessing and receiving support while caring for someone living with chronic kidney disease.Methods: Informal caregivers of people living with chronic kidney disease (n = 13) in the United Kingdom were primarily recruited via community organisations and social media adverts to participate in semi-structured interviews. Interviews explored support needs, experiences of receiving support from different groups (e.g. healthcare professionals, family/friends), and barriers and facilitators to accessing support. Support was understood as including emotional, practical, and informational support. Data were analysed using reflexive thematic analysis.Results: Three themes were generated: (1) "Systems seem to get in the way" - challenges within support systems, illustrating the challenges informal caregivers encountered when navigating complex support systems; (2) Relying on yourself, describing how informal caregivers leveraged their existing skills and networks to access support independently, while recognising the limitations of having to rely on yourself to find support; and (3) Support systems can "take the pressure off", showing how support systems were able to help informal caregivers cope with the challenges they experienced if certain conditions were met.Conclusions: In response to the challenges informal caregivers experienced when seeking support, improvements are needed to better consider informal caregiver needs within healthcare systems, and to develop interventions tailored to informal caregiver needs and context. Within the healthcare system, informal caregivers may benefit from system navigation support and better integration within healthcare teams to ensure their informational support needs are met. New interventions developed to support informal caregivers should fit within their existing support systems and incorporate the qualities of support, such as empathy, that were valued. Additionally, use of an equity framework and user-centered design approaches during intervention development could help ensure interventions are accessible and acceptable.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Health Care Service and Management, Health Policy and Services and Health Economy (hsv//eng)
Nyckelord
- informal caregiver
- chronic kidney disease
- support
- unmet needs
- social networks
- thematic analysis
- Health Care Research
- Hälso- och sjukvårdsforskning
- Psychology
- Psykologi
Publikations- och innehållstyp
- ref (ämneskategori)
- art (ämneskategori)
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