Family caregivers' lived experiences of caring for epidermolysis bullosa patients: A phenomenological study

Abstract

Aims and objectives:To explore the lived experiences of family caregivers of epidermolysis bullosa (EB) patients.Background: Patients with EB need long-term care. Their family experiences physical and mental stress while proving that care. However, very little research has explored the family caregivers' actual lived experiences when caring for EB patients.Design: This is a qualitative research using the phenomenological approach.Methods: Data were collected with the assistance of the Taiwan Foundation for Rare Disorders (TFRD). Interviews were conducted between 2015 and 2017 with primary family caregivers (n = 10) who had cared for EB patients for at least five years. Data were analysed using Colaizzi's (1978) seven-step phenomenological method. COREQ reporting guidelines were utilised. Results: Four themes and eleven subthemes emerged after data analysis: (a) transformation and helplessness: changing expectations and helplessness associated with the rare, unknown disease; (b) mother's responsibility: mothers loving and protecting their children, surviving through adversity and challenges and self-experiencing a child's pain; (c) physical and mental fatigue experienced by the whole family: physical and mental exhaustion, and unbalanced lives; and (d) adjustment and social support:providing mutual assistance to mitigate adversity, hopeful search for treatments, the importance of patient associations and rare disease foundations, and social assistance requirements. Conclusion:Family caregivers experience many challenges when caring for EB patients and experience substantial stress and overwhelming burdens. Consequently, they would benefit greatly from various support systems to reduce the burden of caring for EB patients.Relevance to clinical practice: Healthcare professionals can use the findings from this study to understand the circumstances faced by family caregivers and tailor care and education specifically to support each family's financial, social and household needs, thereby helping them reduce the stress of caring for EB patients. K E Y W O R D S epidermolysis bullosa, family caregiver, lived experiences, phenomenology | 1553 WU et al.

Psychiatric distress in family caregivers of patients with COVID-19

“…At peak times of the epidemic, severe COVID-19 patients need to be hospitalized. Patients without underlying disease and with mild to moderate severity COVID-19 disease are recommended to be cared for at home by informal caregivers (WHO, 2020; Y. H. Wu, Sun, & Lee, 2020 ).…”

“…A review of the literature indicated that only one study qualitatively explored the experience of FCs of relatives with COVID-19 and suggested the importance of evaluating the mental health of FCs with a quantitative study (Y. H. Wu et al, 2020 ). FCs face many challenges such as unmet needs, unpleasant physical, psychiatric, and social during caring for their COVID-19 relatives (Y. H. Wu et al, 2020 ).…”

The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review

“…98 There were only 2 studies of interventions (daily walking and yoga) 42,47 to improve physical health in this population, despite recognition that public health initiatives may need to be modified for caregivers. 22 Smoking, Drinking, and Drug Use Authors of 12 studies explored coping behaviors detrimental to health, including self-harm, 87 the use of alcohol, 45,92,101,104,105 illicit drugs, 92,101,105 and tobacco. 92,100,105 Use of alcohol, illicit drugs, and tobacco were explored as coping mechanisms, but the studies did not elaborate on the frequency of use, and no studies reported on interventions to reduce these behaviors.…”

“…14,47,77,78,85 The remaining quantitative studies measured caregiver's health using other questionnaires, activity trackers, or cortisol. Of them, 19 studies 15,[42][43][44][45][46]50,83,[86][87][88][89][90][91][92][93][94][95][96] demonstrated that the physical health of caregivers who care for a child with a LLC or LTI was negatively affected.…”

“…All qualitative studies (n 5 14) demonstrated that caregivers felt their health was impacted negatively by a caregiver. 8,24,87,[97][98][99][100][101][102][103][104][105][106][107] Pain One of the most common effects of caregiving was pain. Researchers in 32 studies found caregivers reported pain arising from caregiving.…”