ArticleBMJ open2019
Experiencing the care of a family member with Crohn's disease: a qualitative study.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- What do patients and informal caregivers value in IBD care? A narrative inquiry.BMC health services research · 2025Article
- Our Life Is a Rollercoaster! A Qualitative Phenomenological Study Exploring the Impact of IBD on Family Members.Inflammatory bowel diseases · 2024Article
- Psychological Impact of Inflammatory Bowel Disease on University Students: A Systematic Review.Cureus · 2024Review
- A Child with Crohn's Disease: Problems and Stress Level of Parents-Caregivers-A Cross-Sectional Study.Nursing reports (Pavia, Italy) · 2024Article
- Role and perspectives of informal care: a qualitative study of informal caregivers in the Republic of Croatia.BMJ open · 2023Article
- Experience of providing care to a family member with Crohn's disease and a temporary stoma: A qualitative study.Heliyon · 2023Article
- Association between caregiver ability and quality of life for people with inflammatory bowel disease: The mediation effect of positive feelings of caregivers.Frontiers in psychology · 2022Article
- Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis.International journal of environmental research and public health · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support.
designA qualitative study based on a phenomenological approach was conducted through in-depth interviews.
settingParticipants living in Alicante (Spain) were recruited
participantsEleven family caregivers of people with CD were interviewed.
methodsThe in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis.
resultsFive themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.
conclusionThe findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.
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