Family caregivers’ decision process to institutionalize persons with Parkinson's disease: A grounded theory study

doi:10.1016/j.ijnurstu.2011.10.003

International Journal of Nursing Studies

Volume 49, Issue 4, April 2012, Pages 445-454

https://doi.org/10.1016/j.ijnurstu.2011.10.003 Get rights and content

Abstract

Background

Parkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers.

Aims

The purpose of the study was to understand (1) family caregivers’ experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility.

Participants

Twenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease.

Method

Grounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis.

Findings

The caregiving model developed from the data illustrated that heightened caregiver strain—a risk factor for institutionalization—results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease.

Conclusions

Implications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.

Introduction

Parkinson's disease is a complex chronic disease affecting millions of individuals who are cared for at home by family caregivers. These caregivers are often vulnerable and overlooked in professional settings. They experience poorer health and higher mortality rates than non-caregivers (Giunta et al., 2002, Scott, 2006). Without support, they can become strained, especially when the caregiving experience becomes overwhelming. This can negatively impact the family unit if they have difficulty managing the caregiving role and there may come a time when family members must make difficult decisions about whether and when to place their loved one in a nursing home.

The purpose of this study was to better understand how family caregivers, also known as informal caregivers, make the decision to institutionalize a relative with Parkinson's disease. The research questions were (a) How do family caregivers perceive their caregiving experiences? (b) What are the needs of caregivers when caring for a family member with Parkinson's disease at home? and (c) What factors lead family caregivers to institutionalize their relatives with Parkinson's disease?

Section snippets

Background

More than 65.7 million informal caregivers in the United States provide help to persons such as those with Parkinson's disease who have difficulty performing activities of daily living. The average age of caregivers is 63 years-old, and they are usually spouses, adult children, or other relatives who assume major care responsibilities (Administration on Aging, 2008, National Alliance for Caregiving, 2004). If a spouse is unavailable to provide care, another family member, often a daughter or

Method

Grounded theory method, rooted in the sociological perspective of symbolic interactionism and designed to generate substantive theory from data, was used in this study (Glaser and Strauss, 1967, Strauss, 1987). An iterative approach to data collection and analysis, grounded theory is well suited for studying complex phenomena, such as understanding caregiving experiences and long-term care decision-making processes (Charmaz, 2006, Glaser and Strauss, 1967, Strauss, 1987).

Data analysis

Data were analyzed using dimensional analysis and constant comparative method (Schatzman, 1991, Strauss, 1987, Strauss and Corbin, 1998). These analytic strategies are designed for use with text or narrative data in grounded theory studies. They allow the analyst to identify implicit/explicit dimensions of salient concepts of the phenomenon of interest. Data were coded using open, focused/axial, and theoretical coding strategies (Charmaz, 2006, Strauss, 1987). Constant comparative methods

Study participants

The study sample consisted of White predominantly female caregivers and family members with Parkinson's disease. Specifically the sample included 20 caregivers and 17 family members with Parkinson's disease (3 relatives with Parkinson's disease were deceased). Fourteen participants were women caring for their husbands, three were men caring for their wives, and three were daughters caring for a parent (two mothers, one father). The larger proportion of female caregivers was not surprising since

Discussion

The primary intent of this research was to explore caregivers’ experiences in caring for a family member with Parkinson's disease at home and factors that led to long-term care placement. The model, developed from the data, helped us to understand (1) how the intersection between the Parkinson's disease trajectory and caregiving load increased caregiver strain; (2) the conditions and strategies that influenced strain; and (3) how these factors ultimately impacted long-term care placement

Implications for practice

The findings identified several implications for professional practice that are pivotal to meeting the needs of these vulnerable caregivers of relatives with Parkinson's disease. Caregivers in this study described many instances of poor communication with health care providers, which led to misunderstandings and caregiver frustration. This is supported by other literature (AARP Public Policy Institute, 2009).

In order to provide family-centered care when working with patients living with chronic

Limitations of the study

The sampling strategy only permitted data to be collected from one movement disorders center database and narrowed access to other potential participants in the region. There were two caregivers with family members in long-term facilities at the time of the interviews, which required altering interview questions regarding how families would make a long-term care placement decision if their caregiving situations changed. Another limitation was related to the disproportionate gender distribution

Conclusion

Caregivers are often overwhelmed, vulnerable and overlooked in professional settings. The quality of their experiences can have a negative impact on the family unit if they have difficulty managing the caregiving role. Guidance for health providers across disciplines is critical to meet the needs and improve outcomes through tailored interventions for families caring for relatives with Parkinson's disease at home. A better understanding of their needs is essential, specifically in the areas of

Conflict of interest

None declared.

Funding

The Rehabilitation Nursing Foundation supported this study through a New Investigator Research Grant.

Ethical approval

The study received approval from the University of Florida Institutional Review Board.

Acknowledgements

The authors wish to give special recognition to all the caregivers and persons with Parkinson's disease who so graciously agreed to share their stories during this study. Their experiences were the heart of this research. Also we thank Dr. Hubert Fernandez and Dr. Michael Okun, who made available the resources necessary to accomplish this study; and College of Nursing editor, Pamela Selby.

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Family caregivers’ decision process to institutionalize persons with Parkinson's disease: A grounded theory study

Abstract

Background

Aims

Participants

Method

Findings

Conclusions

Introduction

Section snippets

Background

Method

Data analysis

Study participants

Discussion

Implications for practice

Limitations of the study

Conclusion

Conflict of interest

Funding

Ethical approval

Acknowledgements

Social Science & Medicine

Predictors of nursing home placement in Parkinson's disease: a population-based, prospective study

Journal of the American Geriatrics Society

Risk factors for nursing home placement in older adults with and without dementia

Journal of Aging and Health

Psychometric testing of the revised 15-item Bakas Caregiving Outcomes Scale

Nursing Research

Caregivers’ reasons for nursing home placement: clues for improving discussions with families prior to the transition

The Gerontologist

Deciding whether to continue, share, or relinquish caregiving: caregiver views

Qualitative Health Research

Deciding on institutionalization for a relative with dementia: the most difficult decision for caregivers

Canadian Journal on Aging

Constructing Grounded Theory: A Practical Guide through Qualitative Analysis

Shifting the grounds: constructivist grounded theory methods

Factors determining the decision to institutionalize dementing individuals: a prospective study

The Gerontologist

Predictors of caregiver burden in partners of patients with Parkinson's disease

Neurology Sciences

Falling in Parkinson's disease: the impact on informal caregivers

Disability and Rehabilitation

Caregiver strain: considerations for change

Nursing Diagnosis

A review of programs to alleviate the burden of informal caregivers of dependent persons

Archives of Gerontology and Geriatrics

Parkinson's Disease Caregiving: A Descriptive Report

The Discovery of Grounded Theory

Risk factors for nursing home placement in advanced Parkinson's disease

Neurology

Fourth Generation Evaluation

Predictors of institutionalization for people with dementia living at home with a carer

International Journal of Geriatric Psychiatry