We Have the Disease Too: An interview study with family carers of relatives with Parkinson´s on device-aided pump therapy
2025 (English)Independent thesis Advanced level (degree of Master (Two Years)), 10 credits / 15 HE credits
Student thesis
Abstract [en]
Aim This study explores the experiences and caregiver burden of family caregivers providing carefor relatives with advanced Parkinson’s disease undergoing device-aided therapy. The objective isto identify key challenges and insights to inform improved support and care strategies.Methods A qualitative, inductive study design was employed, utilising semi-structured interviewswith nine family carers recruited from two Swedish university hospitals. Thematic content analysiswas performed to identify patterns and themes, ensuring rigour through adherence to SRQRguidelines and iterative coding validation.Ethics Ethical approval was granted by the Swedish Ethical Review Authority. Written and oralinformed consent was obtained from participants, ensuring confidentiality and voluntaryparticipation throughout the study.Findings Five main themes emerged: Life before DAT, Information and decision-making, initiatingtreatment, The role of the Family carer, and Life with DAT. Caregivers reported significant challenges,transitioning from their roles as spouses or relatives to primary caregivers, which often led to feelings ofentrapment and a diminished sense of personal identity. While device-aided therapy improved patientautonomy and reduced some caregiving demands, it introduced new responsibilities, requiring substantialfamily carer involvement in technical and logistical management.Study Limitations The study is limited by its small, homogenous sample, potentially reducinggeneralisability. Perspectives of non-participants and non-Swedish-speaking family carers were notincluded, which may limit the diversity of experiences captured.Conclusions The study highlights the profound impact of advanced Parkinson on caregivers,emphasising the need for integrating their perspectives into Parkinson treatment plans. Enhancedhealthcare systems are required to provide consistent, personalised support for caregivers, ensuringthe sustainability of device-aided therapy. Future research should focus on strategies to alleviatecaregiver burden and promote person-centred care for patients and their families.Conflict of Interest The author declares no conflicts of interest.
Place, publisher, year, edition, pages
2025.
Keywords [en]
Advanced therapy, Caregiver burden, Device-aided therapy, Family caregivers, Parkinson’s disease, Qualitative research
National Category
Neurology
Identifiers
URN: urn:nbn:se:mau:diva-76394OAI: oai:DiVA.org:mau-76394DiVA, id: diva2:1964073
Educational program
HS Omvårdnad
Supervisors
Examiners
2025-06-042025-06-042025-06-04Bibliographically approved