Family experiences as a caregiver for patients with Parkinson's disease: a qualitative study

Abstract

Background Parkinson's disease is a chronic progressive neurodegenerative disorder with unpredictable symptoms, which leads to stress for individuals caring for their family members. Most patients with Parkinson's disease in Indonesia are cared for by family members. Their treatment requires continuous supervision and a great deal of attention. Aims Accordingly, this research explores caregivers' experiences in caring for family members with Parkinson's disease. Methods This study is qualitative with a phenomenological design. Participants, selected via a purposive sampling technique, were individuals caring for and living with family members suffering from Parkinson's disease. The data were analysed using the Colaizzi approach. Results This research identified four themes: the ways in which members of the family adapt; the impact of the patient's condition on the caregiver; support received in providing care; and the cultural and spiritual meanings the caregiver obtained when providing care. Conclusion This study uncovered several aspects that contribute to the understanding of the life of family members as caregivers for Parkinson's disease patients. This research also found there is still limited psychosocial support from health workers, so it is necessary for them to be more proactive in providing support for family members who care for patients with Parkinson's disease.

Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis

“…Acceptance as an attribute was found in nine of the 29 articles reviewed ( Table 3 ). Accepting occurs when family caregivers understand the cause of the problem, embracing the reality of life and all experiences [ 33 ] ( Table 5 , T 1 , Q 1 ). Different relevant moments that acceptance gains importance have been identified in the review papers.…”

“…Accepting the new role makes it possible to achieve a situation of normality when living with LTCs [ 34 , 38 ]. Moreover, Dekawaty et al [ 33 ] relate acceptance to an individual and final stage of adaptation [ 33 ]. Roberts and Struckmeyer [ 56 ] describe acceptance as the ability to step back from a caregiving situation to assess the entirety of the situation ( Table 5 , T 7 ).…”

“…Coping is dynamic, oriented to solve the problems that arise from changes in the family member’s health and depends on both own and external resources [ 33 , 36 , 38 ] ( Table 5 , T 8 –T 10 and Q 4 ). In particular, Dekawaty et al [ 33 ] highlight that coping “involves aspects such as the nature of the stressful or the stimulus itself, personal characteristics and external resources such as the support received” ( p.8). Different coping strategies have been identified in the reviewed papers.…”

“…Different coping strategies have been identified in the reviewed papers. Cognitive coping strategies from the family caregiver perspective include praying, valuing life or having hope [ 33 , 34 , 40 ] ( Table 5 , T 16 ). Behavioral strategies like seeking help [ 32 ] and problem solving [ 38 ] ( Table 5 , T 11 ).…”

“…The self-management attribute emerged in 11 of the 29 articles reviewed ( Table 3 ). Self-management for family caregivers involves balancing care of the family member and themselves [ 33 , 50 , 51 ]. Nevertheless, maintaining balance while caring for a chronically ill person could be challenging [ 51 ] ( Table 5 , T 21 , T 26 , T 31 , Q 5 ).…”