"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, ChelseaUppsala universitet,Hälsovetenskap och e-hälsa,Clinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom (författare)

"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

Artikel/kapitelEngelska2024

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BioMed Central (BMC),2024
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LIBRIS-ID:oai:DiVA.org:uu-512211
https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-512211URI
https://doi.org/10.1186/s12882-023-03444-3DOI

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Språk:engelska
Sammanfattning på:engelska

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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 och genrebeteckningar

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
informal caregiver
chronic kidney disease
support
unmet needs
social networks
thematic analysis
Health Care Research
Hälso- och sjukvårdsforskning
Psychology
Psykologi

Biuppslag (personer, institutioner, konferenser, titlar ...)

Farrand, PaulClinical Education, Development and Research (CEDAR); Psychology, University of Exeter, Exeter, United Kingdom (författare)
Sanderman, RobbertDepartment of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, Netherlands (författare)
von Essen, LouiseUppsala universitet,Hälsovetenskap och e-hälsa(Swepub:uu)louiesse (författare)
Woodford, JoanneUppsala universitet,Hälsovetenskap och e-hälsa(Swepub:uu)joawo336 (författare)
Uppsala universitetHälsovetenskap och e-hälsa (creator_code:org_t)

Sammanhörande titlar

Ingår i:BMC Nephrology: BioMed Central (BMC)25:11471-2369

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Av författaren/redakt...: Coumoundouros, C ...; Farrand, Paul; Sanderman, Robbe ...; von Essen, Louis ...; Woodford, Joanne

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Artiklar i publikationen: BMC Nephrology

Av lärosätet: Uppsala universitet

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