Date Presented 03/28/20
The purpose of this pilot study was to determine the feasibility and tenability of the topic to understand the lived experience of caregiving for someone with PD to understand what is needed to prevent the negative effects of caregiving and the best timing of those interventions. Five participants were recruited and participated in this pilot study. There were four themes that emerged from the data: early education, open and honest communication, ongoing support, and accepting assistance.
Primary Author and Speaker: Jessenia Rodriguez
Additional Authors and Speakers: Julie Watson, Jennifer Duffy
PURPOSE: Caregiver burden and the resulting negative health outcomes is a recognized problem for caregivers of individuals with Parkinson’s disease (Mitchell et al., 2015; Tew et al., 2013). There is a substantial amount of literature on general ways to reduce the risk of caregiver burden and other negative outcomes, but most of the available information focuses on the retrospective analysis and correlation studies (Santos-Garcia & de la Fuente-Fernández, 2015; Viwattanakulvanid et al., 2014). Optimal timing for when to incorporate interventions for caregivers, and what to incorporate in those interventions, is not clear. The literature does not focus on asking caregivers themselves about what they recommend for the timing and content of interventions designed to reduce caregiver burden and the negative health outcomes associated with caregiving (Tew et al., 2013). If caregivers are more prepared for the long-term job of caregiving, perhaps some of the physical, emotional, and economical strains they face can be prevented. The purpose of this pilot study was to determine the feasibility and tenability of the topic which was to understand the lived experience of caregiving for someone with PD and to give caregivers a voice about what they think they need to prevent the negative effects of caregiving and the best timing of those interventions. This information will be used to aid healthcare and social service providers to better prepare caregivers early in their caregiver career to ameliorate the chronic problems associated with caregiving.
DESIGN: The principal investigator utilized a phenomenological approach to examine and understand the lived experience of caregivers of individuals with Parkinson’s disease to understand how healthcare and social service professionals can help new caregivers better prepare for the burdens of caregiving.
METHOD: Familial caregivers of individuals with PD (n=5) who provided a minimum of 15 hours of caregiving per week, with a minimum of three years of caregiver experience were recruited. Face to face interviews were conducted using a semi-structured interview guide and were recorded and transcribed. Theoretical sampling was utilized in order to discover themes. Peer debriefing was utilized to ensure the study reached saturation, that the sample was adequate, and that the themes were repetitive, and member checking was used to validate the results.
RESULTS: There were four themes that immerged from the data: early education, open and honest communication, ongoing support, and accepting assistance. The results of this pilot study suggest that more information should be gathered from caregivers, supporting the need for a larger study.
CONCLUSION: Caregivers require education about the progression of PD and the potential limitations for the care recipients. They require hands-on education and training on how to safely assist ADL throughout the disease process. It is crucial for caregivers to be educated by medical professionals, at the time of initial diagnosis about available resources, long term care needs, and the importance of accepting help. The results of this study suggest caregivers, health care providers, and care recipients must all work cohesively and collaboratively.
References
Mitchell, L. A., Hirdes, J., Poss, J. W., Slegers-Boyd, C., Caldarelli, H., & Martin, L. (2015). Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study. BMC Health Services Research, 15350. doi:10.1186/s12913-015-1010-1
Santos-García, D., & de la Fuente-Fernández, R. (2015). Factors contributing to caregivers’ stress and burden in Parkinson’s disease. Acta Neurologica Scandinavica, 131(4), 203-210. doi:10.1111/ane.12305
Tew, E. H., Naismith, S. L., Pereira, M., & Lewis, S. G. (2013). Quality of life in Parkinson’s disease caregivers: the contribution of personality traits. Biomed Research International, 2013151872. doi:10.1155/2013/151872
Viwattanakulvanid, P., Kaewwilai, L., Jitkritsadakul, O., Brenden, N. R., Setthawatcharawanich, S., Boonrod, N., & Bhidayasiri, R. (2014). The impact of the nocturnal disabilities of Parkinson’s disease on caregivers’ burden: implications for interventions. Journal of Neural Transmission (Vienna, Austria: 1996), 121 Suppl 1S15-S24. doi:10.1007/s00702-014-1200-8
