Introduction Under the burden of chronic disease, caregivers of inflammatory bowel disease (IBD) patients are often concerned about the needs of their relatives that they lose the sight of their own well being. Our primary aim was to determine the need for self care in an unselected cohort of caregivers and secondarily to find possible relationships with their level of stress and QoL as well as with the population characteristics.
Method The study lasted 2 years (2014–2016). 181 caregivers from the outpatient clinic of an IBD tertiary referral centre were recruited. Caregivers’ need for self care was assessed with the caregiver self-assessment questionnaire “How Are You ?” of the American Medical Association.
Perceived stress and well-being were evaluated with two 10-point likert type questions while Short Form survey (SF-36) was used in order to assess caregivers’ QoL. Factors significantly associated with caregivers’ need for self care were entered into a linear regression.
Results 50.8% of the study population were found to need self care. The majority of the caregivers were middle aged women with secondary education and full-time employment. 76.8% of the population were married with children. 64.1% were first degree relatives while none of the caregivers were professionals. 37% had additional help with caregiving when needed. High prevalence of perceived stress (64%) and impaired well being (53%) were recorded in our population. Need for self care was strongly associated with increased level of stress (r=0.848, p=0.001), impaired well being (r=0.936, p=0.001) and low QoL (r>0.8, p=0.001) in the caregivers. Disease flare up (b=0.521,p=0.001), patients’hospitalisation (b=0.250, p=0.001) and the absence of another caregiver (b=0.124,p=0.027) were independently associated with increased caregivers’ stress and increased need for self care.
Conclusion High proportion of caregivers had a need for self-care. Disease flare ups, patients’ hospitalisation and the absence of another carer had been found to be associated with increased need for self care. Relief from caregiving and support may not only reduce stress but also improve caregivers’ well-being and QoL.
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Disclosure of Interest None Declared
- Inflammatory bowel disease
- quality of life
- Self care
- well being
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