Experiencing the care of a family member with Crohn’s disease: a qualitative study
| Autor: | Sofia Garcia-Sanjuan, Manuel Lillo-Crespo, María José Cabañero-Martínez, Angela Sanjuan-Quiles, Miguel Richart-Martínez |
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| Přispěvatelé: | Universidad de Alicante. Departamento de Enfermería, Calidad de Vida, Bienestar Psicológico y Salud, Person-centred Care and Health Outcomes Innovation / Atención centrada en la persona e innovación en resultados de salud (PCC-HOI), Salud Pública |
| Jazyk: | angličtina |
| Rok vydání: | 2019 |
| Předmět: |
Gerontology
Adult Male Crohn’s disease caregivers family Experiences Emotions Context (language use) Disease Care Patient-Centred Medicine 03 medical and health sciences Social support 0302 clinical medicine Cost of Illness Crohn Disease Adaptation Psychological Medicine Humans Family 030212 general & internal medicine Qualitative Research Original Research Aged Aged 80 and over 030504 nursing Family caregivers business.industry caregivers’ experience Social Support General Medicine Middle Aged Comprehension Caregivers Spain Female Enfermería Thematic analysis 0305 other medical science business Inclusion (education) chronic illness Stress Psychological Qualitative research |
| Zdroj: | BMJ Open RUA. Repositorio Institucional de la Universidad de Alicante Universidad de Alicante (UA) |
| Popis: | 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 recruitedParticipantsEleven 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. |
| Databáze: | OpenAIRE |
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