Experiencing the care of a family member with Crohn’s disease: a qualitative study

Abstract

Objectives To explore the experiences of caregivers living with relatives affected by Crohn’s disease (CD) in a context in which the family provides social support. Design A qualitative study based on a phenomenological approach was conducted through in-depth interviews. Setting Participants living in Alicante (Spain) were recruited. Participants Eleven family caregivers of people with CD were interviewed. Methods The in-depth interviews took place in the participants’ homes and were audio recorded and then transcribed for a qualitative thematic analysis. Results Five 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. Conclusion The 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.