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Caring for Parents With Neurodegenerative Disease: A Qualitative Description

Habermann, Barbara PhD, RN, FAAN; Hines, Dana MSN, RN; Davis, Linda PhD, RN, FAAN

doi: 10.1097/NUR.0b013e318295576b
Feature Article

Purpose/Objective: The objective of this study was to explore the positive aspects experienced by adult children in providing care to their parent who has either Parkinson’s or Alzheimer’s disease.

Design: A qualitative descriptive approach was used to analyze audiotaped in-depth semistructured interviews that were conducted with 34 adult children who were primary caregivers as part of a larger randomized clinical trial.

Setting: Individual interviews were conducted by trained research assistants in the caregiver’s home.

Sample: Thirty-four adult children caregivers who were primary caregivers for their respective 34 parents. Seventy-six percent (n = 26) of the caregivers were caring for a parent with Alzheimer’s disease. Twenty-four percent (n = 8) were caring for a parent with Parkinson’s disease. Eighty-two percent were adult daughters. Mean age of the caregiver was 52 years, and the mean age of the parent was 81 years. Fifty-three percent of caregivers were white, and 47% were black.

Data Analysis: A conventional content analysis was performed to summarize themes.

Findings: Results indicated that most caregivers had positive experiences. Three relationship-centered themes were identified: spending and enjoying time together, appreciating each other and becoming closer, and giving back care. A small number of caregivers (n = 6) could not identify positive experiences.

Conclusion/Implications: Caregivers who had positive experiences in caregiving expressed fewer feelings of being overwhelmed or distressed by their situations. Further study is needed on caregivers who do not experience positive aspects in caring for a parent, and these caregivers potentially may be a group that warrants further intervention by advanced practice nurses.

Author Affiliations: Associate Professor, Nursing, and Affiliated Scientist, Center for Aging Research (Dr Habermann), Indiana University, Indianapolis; PhD Student (Ms Hines), Indiana University School of Nursing, Indianapolis; and Ann Henshaw Gardiner Distinguished Professor of Nursing, School of Nursing, and Senior Fellow, Center for the Study of Aging and Human Development (Dr Davis), Duke University, Durham, North Carolina.

Funding was received from the National Institute of Nursing Research (R01 NR008285-01 to Drs Davis and Habermann and T32 NR007066 and 1 F31 NR013864-01 to Ms Hines).

The authors report no conflicts of interest.

Correspondence: Barbara Habermann, PhD, RN, FAAN, Indiana University, 1111 Middle Dr, E 433, Indianapolis, IN 46202 (

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