Dataset Information

Living with Parkinson's disease: A qualitative study of spousal perspectives.

ABSTRACT: Research has demonstrated that Parkinson's disease can have adverse psychological effects on caregivers. Very few studies have focused on the experiences of spouses who are not primary caregivers or who do not identify as primary caregivers. The aim of this study was to explore the experiences of spouses who are not primary caregivers or do not identify as primary caregivers. Twelve Israeli women, spouses of men with Parkinson's disease, were interviewed using a semi-structured in-depth approach. Thematic analysis revealed five themes: before diagnosis, at diagnosis, after diagnosis, interpersonal ways of coping, and intrapersonal ways of coping. A dynamic of oscillation between confronting and avoiding losses was indicated. Non-death losses were mostly unacknowledged among spouses' social circles. Results were interpreted in the context of grieving processes after diagnosis. Findings suggest a need for psychological interventions aimed at creating safe spaces for spouses to engage in a grieving process after diagnosis.

SUBMITTER: Ressler I

PROVIDER: S-EPMC10119893 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Living with Parkinson's disease: A qualitative study of spousal perspectives.

Ressler Itay I Gershfeld-Litvin Avital A

Journal of health psychology 20221107 6

Research has demonstrated that Parkinson's disease can have adverse psychological effects on caregivers. Very few studies have focused on the experiences of spouses who are not primary caregivers or who do not identify as primary caregivers. The aim of this study was to explore the experiences of spouses who are not primary caregivers or do not identify as primary caregivers. Twelve Israeli women, spouses of men with Parkinson's disease, were interviewed using a semi-structured in-depth approach ...[more]

PMID: 36337043

Similar Datasets

Project description:Background: Dementia does not merely affect individuals, the carer and the person living with dementia, but also has a profound impact on their spousal relationship. As such, this study aimed to gain a deeper understanding of how dementia affects spousal relationships with a focus on interpersonal (i.e. relationship adjustment, communication engagement and emotional connection between two individuals) and intrapersonal (i.e. loss of self within the context of relationships) dynamics using a qualitative approach. The study also explored how carers adapt to such relationship challenges in the context of dementia care.Methods: A phenomenological approach was used to capture the subjective experiences of female spousal carers, who regularly support their partner living with dementia. A total of nine semi-structured interviews were conducted.Results: Relationship adjustment theme highlighted how learning to acknowledge role shifts from a spouse to a carer is critical for carers to manage relationship difficulties. Emotional connection theme demonstrated the importance of reminiscing about the shared history between dyads to cope with feelings of loss of affective intimacy. Communication engagement theme revealed carers' need to learn a new way of communicating due to the decrease in meaningful communication and two-way interaction. Sense of self theme highlighted the importance of self-compassion to overcome feelings of self-loss and isolation.Conclusion: Findings suggest that improving the relationship between female spousal carers and their partner living with dementia may require targeted interventions addressing different factors. Such interventions can include a couple's life story approach to enable couples to reminisce about their shared experiences, interactive communication training to enhance meaningful engagements, and a psychological approach such as compassion-focused therapy to overcome emotional challenges and facilitate self-compassion.

Project description:BackgroundPeople with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature.AimTo explore experiences of PD service access for people living with PD, using a qualitative approach.MethodsPurposive maximum variation sampling was used. Semi-structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency.ResultsThe findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two-tiered and under-resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland.ConclusionsThese findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under-provision and under-resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology-enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed.Patient or public contributionThe design and conduct of this study were supported by an expert advisory group (EAG) of 10 co-researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper.

Dataset Information

Living with Parkinson's disease: A qualitative study of spousal perspectives.

Publications

Living with Parkinson's disease: A qualitative study of spousal perspectives.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets