Key Activities of Caregivers for Individuals With Parkinson Disease: A Secondary Analysis.
Journal
The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses
ISSN: 1945-2810
Titre abrégé: J Neurosci Nurs
Pays: United States
ID NLM: 8603596
Informations de publication
Date de publication:
Dec 2020
Dec 2020
Historique:
entrez:
6
11
2020
pubmed:
7
11
2020
medline:
16
6
2021
Statut:
ppublish
Résumé
Individuals with Parkinson disease (PD) require support from family caregivers because of decreased functional levels in a later stage. Much of the research with PD caregivers has been limited by relatively homogenous samples of primarily White and largely spousal caregivers. This secondary analysis aimed to describe a national sample of caregivers of individuals with PD in the Caregiving in the U.S. 2015 data set and their activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and key activities they performed for individuals with PD. Fifty-four caregivers (32 women) were included. The mean (SD) age was 57.7 (16.9) years, and the sample included 57% White, 9% Black, 15% Asian, and 17% Hispanic caregivers. Relationships to care recipient were 32% spouses, 20% mothers, and 11% fathers, with the remaining being a variety of relationships. The number of ADLs and IADLs performed by the caregiver was 2.85 (SD, 2.18) and 4.72 (SD, 2.08), respectively. The most frequent ADLs were getting in and out of beds and chairs, getting dressed, getting to and from the toilet, and bathing/showering. The most frequent IADLs were transportation, shopping, managing finances, giving medicine, preparing meals, and housework. This study shows the number of ADLs and IADLs performed by a diverse group of PD caregivers and indicates the need to acknowledge the extensive work performed by caregivers.
Sections du résumé
BACKGROUND
BACKGROUND
Individuals with Parkinson disease (PD) require support from family caregivers because of decreased functional levels in a later stage. Much of the research with PD caregivers has been limited by relatively homogenous samples of primarily White and largely spousal caregivers.
METHODS
METHODS
This secondary analysis aimed to describe a national sample of caregivers of individuals with PD in the Caregiving in the U.S. 2015 data set and their activities, including activities of daily living (ADLs), instrumental ADLs (IADLs), and key activities they performed for individuals with PD.
RESULTS
RESULTS
Fifty-four caregivers (32 women) were included. The mean (SD) age was 57.7 (16.9) years, and the sample included 57% White, 9% Black, 15% Asian, and 17% Hispanic caregivers. Relationships to care recipient were 32% spouses, 20% mothers, and 11% fathers, with the remaining being a variety of relationships. The number of ADLs and IADLs performed by the caregiver was 2.85 (SD, 2.18) and 4.72 (SD, 2.08), respectively. The most frequent ADLs were getting in and out of beds and chairs, getting dressed, getting to and from the toilet, and bathing/showering. The most frequent IADLs were transportation, shopping, managing finances, giving medicine, preparing meals, and housework.
CONCLUSION
CONCLUSIONS
This study shows the number of ADLs and IADLs performed by a diverse group of PD caregivers and indicates the need to acknowledge the extensive work performed by caregivers.
Identifiants
pubmed: 33156150
doi: 10.1097/JNN.0000000000000544
pii: 01376517-202012000-00005
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
284-288Références
Terriff DL, Williams JVA, Patten SB, Lavorato DH, Bulloch AGM. Patterns of disability, care needs, and quality of life of people with Parkinson's disease in a general population sample. Parkinsonism Relat Disord. 2012;18(7):828–832.
Goy ER, Carter JH, Ganzini L. Needs and experiences of caregivers for family members dying with Parkinson disease. J Palliat Care. 2008;24(2):69–75.
Hand A, Oates LL, Gray WK, Walker RW. Understanding the care needs and profile of people living at home with moderate to advanced stage Parkinson disease. J Geriatr Psychiatry Neurol. 2018;31(5):237–247.
Rosqvist K, Hagell P, Iwarsson S, Nilsson MH, Odin P. Satisfaction with care in late stage Parkinson's disease. Parkinsons Dis. 2019;2019:2593547.
Smith ER, Perrin PB, Tyler CM, Lageman SK, Villaseñor T. Parkinson's symptoms and caregiver burden and mental health: a cross-cultural mediational model. Behav Neurol. 2019;2019:1396572.
Macchi ZA, Koljack CE, Miyasaki JM, et al. Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach. Ann Palliat Med. 2020;9(suppl 1):S24–S33.
Lageman SK, Mickens MN, Cash TV. Caregiver-identified needs and barriers to care in Parkinson's disease. Geriatr Nurs. 2015;36(3):197–201.
Carter JH, Stewart BJ, Archbold PG, et al. Living with a person who has Parkinson's disease: the spouse's perspective by stage of disease. Mov Disord. 1998;13(1):20–28.
Oguh O, Kwasny M, Carter J, Stell B, Simuni T. Caregiver strain in Parkinson's disease: national Parkinson Foundation Quality Initiative study. Parkinsonism Relat Disord. 2013;19(11):975–979.
McRae C, Fazio E, Hartsock G, Kelley L, Urbanski S, Russell D. Predictors of loneliness in caregivers of persons with Parkinson's disease. Parkinsonism Relat Disord. 2009;15(8):554–557.
NAC & AARP. Caregiving in the U.S. 2015. National Alliance for Caregiving and American Association of Retired Persons; 2015. Retrieved from https://www.caregiving.org/wp-content/uploads/2020/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf
NAC & AARP. Caregivers of Older Adults: A Focused Look at Those Caring for Someone Age 50+. National Alliance for Caregiving and American Association of Retired Persons; 2015. Retrieved from https://www.caregiving.org/wp-content/uploads/2020/05/2015_CaregivingintheUS_Care-Recipients-Over-50_WEB.pdf
Carter JH, Lyons KS, Lindauer A, Malcom J. Pre-death grief in Parkinson's caregivers: a pilot survey-based study. Parkinsonism Relat Disord. 2012;18(suppl 3):S15–S18.
Shin JY, Pohlig RT, Habermann B. Feasibility of using PROMIS® in individuals with advanced Parkinson's disease and their caregivers. Res Gerontol Nurs. 2018;11(3):129–136.
Abendroth M, Greenblum CA, Gray JA. The value of peer-led support groups among caregivers of persons with Parkinson's disease (report). Holist Nurs Pract. 2014;28(1):48–54.
Bhidayasiri R, Jitkritsadakul O, Boonrod N, et al. What is the evidence to support home environmental adaptation in Parkinson's disease? A call for multidisciplinary interventions. Parkinsonism Relat Disord. 2015;21(10):1127–1132.
Habermann B, Shin JY, Shearer G. Dyadic decision-making in advanced Parkinson's disease: a mixed methods study. West J Nurs Res. 2020;42(5):348–355.
Habermann B, Davis LL. Caring for family with Alzheimer's disease and Parkinson's disease: needs, challenges and satisfaction. J Gerontol Nurs. 2005;31(6):49–54.
Lee J, Kim SH, Kim Y, Kim YL, Sohn Y. Quality of life of caregivers of individuals with Parkinson's disease. Rehabil Nurs. 2019;44(6):338–348.
Abendroth M, Lutz BJ, Young ME. Family caregivers' decision process to institutionalize persons with Parkinson's disease: a grounded theory study. Int J Nurs Stud. 2012;49(4):445–454.
McLennon SM, Habermann B, Davis LL. Deciding to institutionalize: why do family members cease caregiving at home?J Neurosci Nurs. 2010;42(2):95–103.