Elsevier

Geriatric Nursing

Volume 36, Issue 3, May–June 2015, Pages 197-201
Geriatric Nursing

Feature Article
Caregiver-identified needs and barriers to care in Parkinson's disease

https://doi.org/10.1016/j.gerinurse.2015.01.002Get rights and content

Abstract

Perceptions of service needs and barriers to care among caregivers of individuals with Parkinson's disease have not been well explored. The purpose of this study was to assess caregiver perceptions of their own and patients' medical and supportive service needs. An online and paper survey was disseminated to a sample of caregivers (n = 66) of individuals with Parkinson's disease. Although caregivers reported positive quality of life and adjustment to caregiving, nearly half of the sample endorsed feeling stressed about caregiving. Caregivers reported that services for symptom management, coping with changes in lifestyle, future planning, relationships, and cognition, and wellness strategies were most needed. Reported barriers to patients accessing care included limited service availability and a lack of insurance coverage for services. These findings suggest a need to improve access to services for patients and increased efforts to promote caregiver wellness at movement disorder specialty clinics.

Section snippets

Participants and procedure

Participants were part of a larger needs assessment completed by both individuals with PD and self-identified caregivers.7 The data in this study are comprised only of the caregiver perspectives. Participants (n = 66) were English-speaking adults age 21 and over who self-identified as caregivers to patients with PD. Participants were recruited through clinic listserv e-mails, community health fairs, and support groups from May to December 2012. Eligible participants were provided a web-based

Data analysis

All caregiver participants who provided complete or near complete data were included in the final analyses. Summary scores for all measures were calculated in accordance with standard procedures. Means, standard deviations, and ranges were calculated for continuous variables, as appropriate. Frequencies were calculated for categorical variables.

Sample characteristics

Sixty-six caregivers of individuals with PD completed the survey and were predominately spouses or partners (see Table 2). Caregivers reported spending

Clinical implications

Consistent with needs reported in a patient sample,7 our caregiver sample endorsed high needs for symptom management, coping with changes in lifestyle, future planning, relationships, and cognition, and wellness strategies. While a body of research has demonstrated increased caregiver burden and/or strain as disease symptoms worsen and the disease course progresses,6 our results importantly reveal that caregiver stress can be present even when PD has limited functional impact on daily tasks and

Conclusion

In summary, our focus on caregiver perspectives offers important insights into the challenges of caregiving for individuals with PD. Similar to a recent needs assessment in a patient sample,7 our findings suggest that, like patients, caregivers report limited treatment of NMS and identify barriers (i.e., provider availability, treatment cost) to accessing crucial care. Development of clinical research trials to target treatment of NMS, including tele-health or computer-based programs, and

Acknowledgments

The authors wish to thank all the participants of this survey. The authors also wish to acknowledge the support to Virginia Commonwealth University's Parkinson's and Movement Disorders Center through the Medical College of Virginia Foundation, which enabled completion of this survey study. Survey data were collected and managed using REDCap electronic data capture tools hosted at Virginia Commonwealth University through award number UL1TR000058 from the National Center for Research Resources.

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    Conflict of interests: None.

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