The subjective experience of family caregivers of people living with Parkinson’s disease: a meta-ethnography of qualitative literature

Zhou, Wentao; Hou, Liyuan; Zhang, Xianhui; Wang, Qiaohong; Gu, Jing; Zhang, Ru; Yang, Hui

doi:10.1007/s40520-021-01995-9

Cited by 6 publications

(3 citation statements)

References 59 publications

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“…The involvement of team members across multiple disciplines can overcome the shortcomings related to the lack of social support for patients and carers [35]. Research has demonstrated the high emotional burn and the need for support among the carers for PD patients [36]. Similarly, our study revealed that the limited time for communication and lack of multidisciplinary collaboration are the barriers to providing PC for PD patients and their carers at the interpersonal level.…”

Section: Discussionmentioning

confidence: 64%

Facilitators and barriers to the delivery of palliative care to patients with Parkinson’s disease: a qualitative study of the perceptions and experiences of stakeholders using the socio-ecological model

Zhang

Lou

et al. 2023

BMC Health Serv Res

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Objective Palliative care (PC) can improve the quality of life of Parkinson’s disease (PD) patients and their carers. However, the impact of PC services on patients with PD remains unclear. This research was conducted to identify the barriers and facilitators influencing PC services for patients with PD based on the Social Ecological Model (SEM) framework. Methods This research was conducted through semi-structured interviews, employing SEM to organize themes and identify potential solutions across multiple levels. Results A total of 29 interviewees (5 PD clinicians, 7 PD registered nurses, 8 patients, 5 caregivers, and 4 policy makers) completed the interviews. Facilitators and barriers were identified according to the levels of the SEM. Several facilitators were identified, i.e., (1) individual level: the critical needs among PD patients and their relatives and the desire for PC knowledge among health professionals; (2) interpersonal level: social support; (3) organizational level: the investments towards systematization of PC; and nurses are the bridge between patients and doctors; (4) community level: the convenience of community services; and hospital-community-family-based services; (5) culture and policy level: existing policy. Conclusion The social-ecological model proposed in this study helps illuminate the complex and multilevel factors that may influence PC delivery to PD patients.

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Section: Discussionmentioning

confidence: 64%

Facilitators and barriers to the delivery of palliative care to patients with Parkinson’s disease: a qualitative study of the perceptions and experiences of stakeholders using the socio-ecological model

Zhang

Lou

et al. 2023

BMC Health Serv Res

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“…This is the first systematic review of qualitative literature focusing on the sole perspective of CGs of PwP treated with STN-DBS. Other available PD-related reviews have neglected the voice of CGs in their uniqueness [58] or specifically STN-DBS [59,60]. Some limitations should be noted.…”

Section: Strengths Limitations and Research Future Directionsmentioning

confidence: 99%

Caregivers' burden and deep brain stimulation for Parkinson disease: A systematic review of qualitative studies

Cavallieri,

Ghirotto,

Sireci

et al. 2023

Euro J of Neurology

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Background and purposeThe impact of subthalamic nucleus deep brain stimulation (STN‐DBS) on caregivers' burden is understudied. We perform a systematic review and meta‐synthesis aggregating qualitative studies involving partners of people with Parkinson disease (PwP) to explore their experiences and unmet needs.MethodsA systematic review for retrieving qualitative studies included six databases: MEDLINE, Embase, CINAHL, Cochrane, PsycInfo, and Scopus. Inclusion criteria were as follows: (i) studies on the experience of caregivers of PwP in the context of STN‐DBS, (ii) English peer‐reviewed articles, and (iii) qualitative or mixed methods studies reporting caregivers' quotations. After the appraisal of included studies, we performed meta‐synthesis of qualitative findings. Descriptive themes and conceptual elements related to PwP partners' experiences and unmet needs were generated.ResultsA total of 1108 articles were screened, and nine articles were included. Three categories were identified: (i) dealing with Parkinson disease (PD) every day (the starting situation characterized by the impact of PD on ordinary life; the limitations to partners' socialization; partners' efforts in stepping aside for love and care activities), (ii) facing life changes with STN‐DBS (the feeling of being unprepared for changes; the fear and concern due to loved ones' behavioral changes; struggling to find an explanation for those changes), and (iii) rebuilding the role of caregiver and partner after STN‐DBS.ConclusionsThis meta‐synthesis elucidates concerns, challenges, and unmet needs of partners of PwP who underwent STN‐DBS. It is important to provide them with information, education, and adequate support to face these challenges. Professionals need to involve partners in the care and decision process, because STN‐DBS‐related outcomes do not depend solely on the well‐being of PwP but also on the well‐being of individuals surrounding them.

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“…Moreover, advanced PD imposes a substantial strain on caregivers, making their caregiver roles challenging. A meta-ethnography highlighted the complex and dynamic experiences of family caregivers for PD patients, underlining the heavy burden associated with caring for those with PD ( 7 ).…”

Section: Introductionmentioning

confidence: 99%

The palliative care needs and experiences of patients with advanced Parkinson’s disease: a qualitative scoping review

Lou,

Li,

Chen

2024

Front. Med.

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AimTo determine the experiences and needs of palliative care in patients with advanced Parkinson’s disease (PD).MethodsA scoping literature review methodology, as described by the Joanna Briggs Institute, was employed to search for relevant literature. An electronic search of studies published in English was conducted across five databases from inception to 10 September 2023.ResultsThe search yielded a total of 1,205 articles, with 20 meeting the inclusion criteria. The findings were organized into four themes: (1) unmet emotional and informational needs; (2) needs for effective coordination of care; (3) planning for the future; and (4) symptom management. This scoping review highlights the intricate nature of palliative care for patients with PD and sheds light on issues within current palliative care healthcare systems. The findings emphasize the necessity for individualized interventions and services to address the diverse unmet palliative care needs of people with PD.ConclusionThe study reveals the complex landscape of palliative care for individuals with advanced PD, emphasizing the inadequacies within existing healthcare systems. The identified themes underscore the importance of tailored interventions to address the varied unmet palliative care needs of this population.

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The subjective experience of family caregivers of people living with Parkinson’s disease: a meta-ethnography of qualitative literature

Cited by 6 publications

References 59 publications

Facilitators and barriers to the delivery of palliative care to patients with Parkinson’s disease: a qualitative study of the perceptions and experiences of stakeholders using the socio-ecological model

Facilitators and barriers to the delivery of palliative care to patients with Parkinson’s disease: a qualitative study of the perceptions and experiences of stakeholders using the socio-ecological model

Caregivers' burden and deep brain stimulation for Parkinson disease: A systematic review of qualitative studies

The palliative care needs and experiences of patients with advanced Parkinson’s disease: a qualitative scoping review

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