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

International Journal of Nursing Studies 49 (2012) 445–454

Contents lists available at SciVerse ScienceDirect

International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns

Family caregivers’ decision process to institutionalize persons with Parkinson’s disease: A grounded theory study Maryann Abendroth a,*, Barbara J. Lutz b, Mary Ellen Young c a

Florida State University, College of Nursing, 98 Varsity Way, Tallahassee, FL 32306-4310, United States Department of Health Care Environments and Systems, College of Nursing, University of Florida, United States c Department of Behavioral Science and Community Health, College of Public Health and Health Professions, University of Florida, United States b

A R T I C L E I N F O

A B S T R A C T

Article history: Received 1 April 2011 Received in revised form 20 September 2011 Accepted 3 October 2011

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. ß 2011 Elsevier Ltd. All rights reserved.

Keywords: Caregivers Caregiving Decision-making Long-term care placement Parkinson’s disease Grounded theory

What is already known about the topic?  Informal family caregivers experience poorer health and higher mortality rates than non-caregivers.  Understanding the reasons why care recipients are institutionalized and how family caregivers arrive at those decisions may lead to better informed decisions

* Corresponding author. Tel.: +1 850 644 5979; fax: +1 850 644 7660. E-mail address: [email protected] (M. Abendroth). 0020-7489/$ – see front matter ß 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2011.10.003

based on the needs of the individual and the caregivers. What this paper adds  A grounded theory model helps narrow the gap in understanding the complexities in the caregiving process.  The knowledge that a diverse support network for caregivers is paramount to maintain home placement of persons with Parkinson’s disease.

446

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

1. 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? 2. 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 daughter-inlaw may assume the caregiver role (Administration on Aging, 2008; National Alliance for Caregiving, 2004). The value of this care is greater than $375 billion annually (Levine, 2008; National Alliance for Caregiving, 2009). The caregiving role can be extremely daunting. It typically requires major changes in the caregiver’s daily lifestyle, including regular availability and vigilance (Answers4Families, 2007). The caregiver becomes increasingly knowledgeable about the many facets of this role (Answers4Families, 2007). Caregivers often have significantly higher rates of depression and stress than family members who have not assumed this role. Not surprisingly, those who care for relatives with Parkinson’s disease experience similar degrees of psychosocial burden as those caring for persons with stroke and dementia (Thommessen et al., 2002). Challenges associated with caregiving have increased over the years as survival rates of persons with disabling chronic conditions have improved. Despite advances in medical care to improve survival rates, there is an increasing need for informal/family caregivers to provide more intense care (O’Brien and Elias, 2004). Unfortunately, caregivers often lack the guidance and support needed to effectively carry out their responsibilities (Scott, 2006). Existing formal support services, which aim to relieve the emotional, physical and financial

hardship of informal caregiving, vary from state to state, and many are poorly funded (Administration on Aging, 2009; O’Shaughnessy, 2008). Without needed external support, caregivers may be forced to prematurely institutionalize their family members in long-term care facilities (i.e., nursing homes, assisted living facilities). The decision to move the loved one with Parkinson’s to a long-term care facility is often coupled with severe guilt, stress, and grief. Many caregivers fear being judged as insensitive by other family members or feel they deeply betrayed their relatives because they promised to never institutionalize them (Rappoport and Lowenstein, 2007). The decision process can also produce heightened anxiety and stress due to limited placement choices within a narrow time frame. The grieving process may then be triggered, as anticipatory grief becomes real for the caregiver when the loved one’s condition progressively worsens and institutionalization appears to be inevitable. Not only do caregivers experience distress over the pending physical separation from the loved one (Answers4Families, 2007), end-of-life grief may also surface at this time. Safety is another factor to consider when making LTC placement decisions. Fear of injury from frequent falls, incontinence and excessive nighttime activity of care recipients all play a role in the decision process (Hope et al., 1998). Not surprisingly, spousal caregivers tend to delay institutionalization and may thus need help in the decisionmaking process (Cohen et al., 1993). Families must also consider the financial cost of facility placement, which can create anxiety, especially if families do not have long-term care insurance. By 2030, many older adults will not have enough assets to cover basic expenses or costs related to residing in a nursing home or receiving services from a home health provider (VanDerhei and Copeland, 2003). Understanding the complexities involved in the longterm care decision-making process among caregivers of persons with Parkinson’s disease bridges an important gap in the current caregiver literature. Existing studies focus mainly on caregivers of persons with dementia (Caron and Bowers, 2003; Caron et al., 2006), and all known studies related to long-term care placement solely for persons with Parkinson’s disease are dated (Aarsland et al., 2000; Goetz and Stebbins, 1993). Learning about the reasons persons are institutionalized, and how families come to those decisions, can help caregivers make informed decisions based on theirs and their care recipients’ individual needs (DeLuca, 2008). This research thus provides knowledge fundamental to the provision of tailored interventions to help both of these vulnerable populations—persons with Parkinson’s disease and the family members who care for them. Interventions are essential because they improve caregiver well-being and can also delay institutionalization (Mittelman et al., 2006). 3. 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

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

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). 3.1. Sample and sampling Participants were recruited from a university affiliated movement disorders center database in the southeastern United States. Seven percent (n = 6) of the accessible population were ethnic minority which was not surprising since Parkinson’s disease is more common in Caucasians (Willis et al., 2010). Eligible participants could be from rural or suburban areas. They were defined as alert and oriented adult men and women who were primary caregivers for relatives with Parkinson’s disease. Caregivers were contacted by phone or approached at Parkinson’s disease support group meetings. Initially, purposeful and snowball sampling were used to recruit full-time caregivers of a relative with Parkinson’s disease (Strauss, 1987). Based on the ongoing analysis of early interviews, theoretical sampling was used to guide interview question development and subsequent participant recruitment (Strauss, 1987). After interviewing a male caregiver, for example, we determined his experiences were slightly different from those of the female caregivers we had interviewed. This led to seeking enrollment of additional male caregivers for comparative analysis. Other factors that guided participant selection included relatives with Parkinson’s disease who had undergone deep brain stimulation surgery, home situations in which the caregiver was caring for more than one person (e.g., a spouse with Parkinson’s disease and a parent with dementia), and caregivers of spouses with Parkinson’s disease who were deceased. We continued sampling and interviewing participants until interview responses became repetitive and no new themes or categories were identified (i.e., saturation was achieved). 3.2. Data collection The study received approval from a university affiliated Institutional Review Board. Initial interview questions were open-ended and semi-structured, allowing caregiver participants latitude to describe experiences of caring for someone with Parkinson’s disease. Examples of these questions are as follows: ‘‘Tell me about caring for [name].’’ ‘‘What helps you care for [name]? What problems have you encountered? How do you handle them?’’ Follow-up questions and probes were used to gain more in-depth insight into caregivers’ thinking about institutionalization of their family member. Those who had decided on longterm care placement were asked to reflect on the decision. This allowed us to see how participants perceived these phenomena without imposing our ideas or beliefs. Interviews were conducted from April 2009 to January 2010. They lasted 1–2 hours and were conducted in a place convenient and private for the participant. They were digitally recorded, and transcribed verbatim by a professional transcriptionist. All files were secured on encrypted electronic media.

447

4. 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 helped to determine similarities and differences in each level of analysis (Charmaz, 2006; Glaser and Strauss, 1967). Data were transcribed verbatim, de-identified and entered into NVivo 8.0 qualitative data management software. Data were analyzed line-by-line to identify the important concepts and dimensions of caregiving for a relative with Parkinson’s disease and the institutionalization decision-making process. For example, as caregivers described the caregiving process, they identified several task-related and emotional dimensions of caregiving. In subsequent interviews we asked more focused interview questions to further delineate the conceptually distinct forms of caregiving. As new dimensions were identified, the earlier data were re-analyzed to determine if what was found in later interviews existed in the earlier interview data. Constant data comparisons established conceptually clear categories that were well represented throughout the data (Charmaz, 2006, 2009). In order to ensure scientific rigor, we used member checks for data verification. As data were analyzed, the interview questions were revised to address new concepts and dimensions that were identified. We also met with a group of study participants to review the developing model during the analytic process (Guba and Lincoln, 1989). Audit trails were kept with substantive and theoretical memos, and meetings with a multidisciplinary research group were held to discuss the ongoing analysis. The research group provided insights and suggestions about strategies for data collection and analysis, and ongoing model development throughout the iterative process. 5. Findings 5.1. 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 the incidence of Parkinson’s disease has a 2:1 male/female ratio (Van Den Eeden et al., 2008). Three of the 20 caregivers (a wife, a husband and a daughter) selected to have the relative with Parkinson’s disease present during the interview. Two of the 20 caregivers currently had their family member with

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

448

Parkinson’s disease in a long-term care facility, and a third caregiver’s spouse had returned home after living in a longterm care facility. The length of time since Parkinson’s disease diagnosis ranged from 3 to 23 years, and symptom severity had progressed at different rates since the diagnosis. One person with a 10-year diagnosis history, for example, presented with mild symptoms whereas another with a 12-year diagnosis history presented with severe symptoms. Overall, these participants were at various points in their illness trajectory, ranging from being fully cognizant with mild physical symptoms (i.e., tremors, changes in gait) to severe disability with symptoms of dementia. The caregivers were also in various stages of their caregiving experience. Those caring for persons with mild Parkinson’s disease symptoms did not discuss major adjustments in their lifestyles. Those caring for persons with moderate to severe symptoms described how they often had to sacrifice their own needs in order to maintain optimal care for the relative with Parkinson’s disease. In some cases, caregivers’ lives revolved so strongly around the relative with Parkinson’s disease that they described feeling as though their identities blurred with the identity of their loved one as illustrated here. ‘‘I think you get to the point where you feel like you’re losing yourself, be that emotionally. I feel drained emotionally. . . I’m beginning to wonder if this is all there is to life’’. 5.2. Caregiving model overview As shown in Fig. 1, the conceptual model created from the data in this study illustrates the process of informal/ family caregiving for persons with Parkinson’s disease over time and the factors that influence the decision to place

them in a nursing home. The horizontal axis conceptually illustrates the Parkinson’s disease illness trajectory from diagnosis to death. While the time frame varies with each person and there are relapsing/remitting phases in the disease process, Parkinson’s disease is a progressive, unpredictable, chronic illness that ultimately ends in death that is often caused by secondary complications of the illness (Weintraub et al., 2008). The vertical axis on the model represents a concept labeled ‘‘caregiving load’’ and is made up of instrumental and interactional caregiving. Caregiver strain (the diagonal line) results from the progression of the disease and the increase in caregiving load. When the strain became too great due to disease progression and increased caregiving load or because of seminal (trigger) events, the caregiver decided to institutionalize the person with Parkinson’s disease. Finally, there were several conditions and strategies that influenced strain and therefore impacted the decision to institutionalize. Each of these sections of the model is described in more detail below. 5.2.1. Caregiving load and strain Caregiving load is defined by two conceptually distinct and complex categories of caregiving. The first category, instrumental caregiving, focuses on the physical and mental actions or tasks assumed in a caregiving role. These included assisting with basic and instrumental activities of daily living (e.g., bathing, feeding, driving, shopping) and mental activities, such as making decisions on behalf of the person with Parkinson’s disease. A spousal caregiver explained this type of caregiving in the following way. A typical day would be getting up in the morning, getting her dressed, insuring that she got her medicines,

One or more triggers that influence the long-term care placement decision

Long-Term Care Placement Strategies that decrease primary caregiver strain

Increasing over Time

Caregiving Load (Instrumental & Interactive)

Risk of safety to caregiver and/or person with Parkinson’s disease Falls with severe injury Inability to manage a change in health status Depleted informal and formal support

Conditions that decrease primary caregiver strain Strong informal and formal support Strong sense of self preservation Pre Parkinson’s disease life circumstances Capability to manage imposing life events

Planning Seeking knowledge Adjusting to the environment Seeking support Caring for self

Conditions that increase primary caregiver strain and lead to the risk of long-term care placement Diminishing informal and formal support Weak sense of self-preservation Pre Parkinson’s disease life circumstances Diminishing ability to manage imposing life events

Diagnosis

Increasing Severity over Time

Disease Trajectory Fig. 1. Parkinson’s disease caregiving model.

Death

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

insuring that she ate as much as she was going to eat. . .. [Eventually], I just carried her. I’d just pick her up and carry her to the bathroom. It was easier than putting her in her wheelchair. The second category, interactive caregiving, focuses on evolving roles, relationships and emotions in the caregiving experience. Another spouse reflected on this type of caregiving in this statement: It’s more like, I think the mother, like you’re taking care of him, covering him at night, making sure he’s warm, that type of thing. It’s more of that relationship rather than just an equal relationship as a husband and wife situation. Taken together, instrumental and interactive caregiving make up the concept of caregiving load, illustrated in the following example: It was a horrible emotion (feeling abandoned). You never knew when it was going to come on. I would be sitting there and all of a sudden, you know, my God, I’ve got to wash dishes, it’s time to cook dinner, I’ve got clothes to fold, I’ve got to go strip the bed and remake it, because of an accident. And tomorrow is just going to be the same thing, and the next day. Caregiving load was impacted by the severity of the illness and the resulting tasks and changes in roles and relationships the caregiver experienced. The conceptual model illustrates that caregiver strain is increased by increased volume of caregiving load in relation to the increased severity of the illness over time. Initially, the term was labeled ‘‘burden’’ in the conceptual model; however, the caregivers indicated that caregiver ‘‘strain’’ was more accurate a word to describe their experiences because it was less harsh sounding than ‘‘burden.’’ In the literature, those two constructs are often used interchangeably (England, 2000). The following caregiver describes how. The whole day was surrounded by medication timing, by therapy, by exercising, by naps, by food choices that don’t interact with the medicine. . . Yeah, if she takes the medicine at 8:00, then we can schedule a doctor’s appointment for 9:00, because the tremors will be over, and we can be dressed. If we can get back by 11:00, then we can take medicine at home. So, that half hour or so that she’s going to be tremoring so badly, she’s here and she’s comfortable. Then we can have lunch, and then if we want to go out, we have this window of time.

449

trajectory. Support structures, the caregiver’s sense of selfpreservation, pre-Parkinson disease life circumstances, and imposing life events were influential in affecting strain and subsequent institutionalization. Availability of support structures was an important condition that impacted strain. Formal and informal support were important to overall caregiver well-being, especially in reducing strain in order to help them better manage caregiving responsibilities. The findings showed that support, individualized for each family, had many intertwined facets. For example, friends provided needed empathy that some families were unable to provide, whereas health care providers provided specific services (e.g., nursing care, mental health counseling and community referrals to support groups and respite care). Respite would help because I know I’ve tried it before and my attitude changed during that time. Actually I felt more rested and felt like I could cope better. When I was able to get away and do something on my own. Another condition that affected strain was caregivers’ sense of self-preservation (i.e., self care). In this study, caregivers were strongly committed to their spouses or parents with Parkinson’s disease, and long-term care placement was seldom considered, especially by caregivers who held the view that care should begin and end in the home. However, some caregivers became so involved with their loved ones that they neglected their own basic needs. It was interesting, yet not surprising, that many caregivers spoke about the need to care for self or to have a sense of selfpreservation but were unable to do it because of the overwhelming responsibilities of caring for the relative with Parkinson’s disease. Some caregivers had difficulty separating themselves emotionally and physically from their relative with Parkinson’s disease. Their lives were so intertwined that there was no time for their own needs, as illustrated by the following quote from a caregiver. I’ve had a lot of years of painting and it’s just, I know it helps me as far as my well-being and contentment within myself. It helps me to paint. But if it’s going to take getting me stressed out to get out here and paint while I’m worried about him, I’ll just set this aside and make sure he’s taken care of.

This example clearly indicates strain which was often a result of unrelenting care and responsibilities secondary to an unpredictable illness course such as Parkinson’s disease. The course of the illness increased over time as the relative with Parkinson’s disease became more disabled and needed more frequent medical care. As strain increased, the risk for institutionalization also increased.

Lack of self-care and self-preservation put caregivers at risk for exhaustion and inability to manage unexpected events that resulted in long-term care placement. Depending on the relationship between the caregiver and the person with Parkinson’s disease, the emotional turmoil of the placement decision process triggered feelings of guilt, betrayal, abandonment and a general sense of defeat (i.e., not having the fortitude to care for the person at home). These strong emotions impeded the decision-making process and delayed placement, even if the caregiver’s own well-being was jeopardized as described here.

5.2.2. Conditions that affect caregiver strain Caregivers described several conditions that increased or decreased caregiver strain along the Parkinson’s disease

Then there’s times when he’s just not himself. Those are the times that it scares me. . . I hadn’t thought about putting him in a nursing home because we’d always been

450

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

so close and I feel like I can’t live without him. . . I get scared, and I almost hate him because it’s not him. He’s not the one I fell in love with when his personality changes like that. And then I’m ready to send him off. What if, on an impulse, I go ahead and make the arrangements and he’s in there and then I regret it. Then what? How do you undo it? It wouldn’t be undoable at that point. In the following example, the feelings of guilt still existed, but the caregiver (adult daughter) realized that self-preservation for her family needed to be a priority in the long-term care decision process. It was, and still is, something—a decision that I (caregiver) agonize over every day. Every time I go there, I leave in tears because it breaks my heart. But I also know that my first obligation is to my husband and to my boys and to myself, and because of that, she’s (mother with Parkinson’s disease) three minutes from me—I see her every day. Another condition that impacted caregiver strain was pre-Parkinson’s disease life circumstances. One example of this was generational beliefs regarding home versus nursing home care as this middle-aged caregiver reflected. I think with my dad’s generation, they didn’t put their parents in different types of homes. Our generation, we understand. Like I know for my girls, I want to have that set up. I think my dad, we always had my grandparents at home. They never went anywhere because the family always took care of everything, but back then, not everybody was working either, the way that we are today in our society. Previous outlook on life was also an existing preParkinson’s disease life circumstance. A ‘‘glass half full or half empty’’ philosophy played a role in how caregivers managed their caregiving experiences. Pre-illness relationship dynamics and personal as well as cultural attitudes affected the way caregivers managed their responsibilities and risk for strain along the course of the illness. Caregivers commented that the stress of caring for a person with a chronic illness can cause previous problems in a relationship to re-surface. One caregiver made an interesting reference to cultural expectations of caregiving when she noted, ‘‘The caregiver is always the woman. The woman’s position is always the secondary one. That’s the way our society is.’’ She believed caregiving was part of a woman’s role, and any plea for help due to being overwhelmed or exhausted labeled the person as a complainer. Even learning to ask for help, sometimes I’ve been so frustrated with everything that’s on the plate, plus him. I need something, but as a woman, you’re hesitant to say that, and men doctors think, you know, you’re a woman and you’re just belly-aching. Several caregivers were worried about not being able to care for their relative with Parkinson’s disease in the event of an imposing life event, a condition that affected strain.

For example, if a sudden serious illness affected the caregiver, the strain would be so severe that it could not be moderated. A change in family finances due to lost retirement investments or other financial concerns was another life event that increased caregiver strain. Caregivers often found that financial crises, coupled with the rising cost of caregiving, made long-term care placement prohibitive. The following quote by a caregiver illustrated this concern. I think when people hear Parkinson’s, they think Michael J. Fox. They think Janet Reno. They think Pope John Paul, Mohammed Ali. The difference between those people and the reality of most Americans is that they have plenty of money to have the best care (including long-term facility care) and all the help in the world that they need, and 99% of Americans don’t have that. Thus, if caregivers had difficulty managing events such as the unexpected loss of health or imposing financial difficulty, then their risk of caregiver strain increased and often could not be moderated. 5.2.3. Strategies to manage caregiver strain We identified five strategies that caregivers used to manage strain. They were planning, seeking knowledge, making adjustments to the home environment, seeking support, and caring for self. Day-to-day planning became a priority due to the complex nature and unpredictability of symptoms of Parkinson’s disease progression. For example, planning focused on monitoring medication schedules due to the high frequency of dosing and to prevent other drug and food interactions. The strategy of seeking knowledge about the illness was also common in order to mitigate the anxiety of this type of complex caregiving. Caregivers also sought to learn about resources that could provide them respite opportunities. Another important caregiver strategy was making adjustments to the home environment. Persons with Parkinson’s disease experience symptoms of bradykinesia, rigidity and postural instability which put them at risk of falls. Reducing clutter, removing throw rugs, adding assistive devices (i.e., a chair lift), or moving into a new home to accommodate their relative with Parkinson’s disease were modifications made by the caregivers. Seeking support was another strategy they used by reaching out to family and other sources such as the church community, support groups, friends, coworkers and health care providers. This gave caregivers strength and validation when they became mentally and physically strained. The importance of caring for self was a strategy most caregivers used to focus on their own needs such as gardening, reading and short periods away from home when they knew their loved one had another reliable caregiver. These activities replenished their reserve and enhanced their mental well being. 5.2.4. Triggers that increased the likelihood of institutionalization Three of the 20 caregivers in this study moved their relative with Parkinson’s disease to a long-term care facility. One of the three persons returned home after

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

several months. The long-term care decision process occurred over a period of time. We identified several triggers or pivotal events that increased the likelihood of long-term care placement, including: (a) risk of safety to caregiver and/or relative with Parkinson’s disease, (b) falls with severe injury, (c) inability to manage a change in health status, and (d) depleted informal and formal support. One serious factor was the fear that these relatives with Parkinson’s disease would hurt themselves or others because they were experiencing hallucinations that led to harmful behaviors toward the caregiver. Regardless of the final decision for placement, all three caregivers agreed that there were ongoing stressors from caregiving that kept worsening, and finally there was a pivotal event that led to the decision of long-term care placement. For two of the three caregivers, the decision was made during a crisis (falls with injury, depleted support, and hallucinations causing risk of safety to the caregiver and to the person with Parkinson’s disease). For the third person, the pivotal event was the realization that she could no longer provide care for her husband at home due to inability to manage his worsening health status. This event is what shifted her perception that long-term care placement was not an option to the understanding that long-term care placement as the only option. It was not just the Parkinson’s. It really mainly was the intestinal problems—the reason. I didn’t feel I could handle the intestinal thing and also the Parkinson’s. . .. that made me realize that I couldn’t anymore. In this incident, there were numerous events that led to placement, and the worsening other health condition of this relative with Parkinson’s disease played a pivotal role in the caregiver becoming exhausted and unable to manage his care. Interestingly, the act of falling, especially if there were no severe injuries, was not a trigger which caused facility placement. Many persons with Parkinson’s disease with more advanced symptoms had numerous falls, some with injuries; however, placement was not even considered unless the injury from the fall was severe. The data revealed that falling was a way of life for these families. They did not minimize the danger of falls; yet, they were described as an occurrence that was accepted as part of the progression of Parkinson’s disease. And one night I came home. He’s sitting on the stool in the kitchen, blood caked all over his face, blood caked in his beard, all over his clothes, and he lost his glasses. We took him to the emergency room. He got all cleaned up and stitched up. He didn’t want to go; he didn’t think that it was necessary for him to go. Yet as falls and injuries worsened, the outcomes changed as this caregiver revealed about her mother with Parkinson’s disease. I fell catching her because I know you know when Parkinson’s patients fall, it’s dead weight. And I caught her going into the tub and hurt my back. And at that point, our family doctor said, ‘‘You’re done.’’

451

The last factor leading to long-term care placement was lack of support from numerous types of sources. For example, caregivers explained that without that support from family living nearby and the professional community, the decision to institutionalize would have been hastened. Those families whose relatives with Parkinson’s disease were not institutionalized discussed circumstances that would lead to the probability of a long-term care placement decision. 6. 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 decisions for relatives with Parkinson’s disease. These findings may provide health care providers with insight about how and when to intervene to help caregivers prevent premature institutionalization of their relatives with Parkinson’s disease while helping to preserve the health of the caregiver. The caregivers’ stories helped us to understand the complexities of caregiving from their perspectives and brought to light the intricacies of long-term care decision-making and support needs for caregivers and their relatives with Parkinson’s disease. During the interviews, caregivers spoke extensively about the importance of having support to better manage the care of the person with Parkinson’s disease at home. It was interesting to see how this construct of support was woven throughout the entire model. Formal and informal support for caregivers was a condition that was essential in helping caregivers mitigate strain, maintain their own health and well-being, and reduce risk of premature institutionalization. Examples included having friends, coworkers, support groups, respite, health care providers, spirituality and pets. Diminished or no support played a role in increasing strain and was subsequently a trigger of long-term care placement. The literature addresses several factors that influence caregiver strain and decision to institutionalize, including (a) hallucinations/delusions, (b) dementia-related behaviors, (c) diminished support, (d) excessive nighttime activity, and (e) quality of the family’s relationship and support (Andel et al., 2007; Buhr et al., 2006; Goetz and Stebbins, 1993; Kao and Stuifbergen, 1999). The factors specific to actual long-term care placement in this study were similar to the ones in the literature, e.g., injury from falls, hallucinations/delusions and depleted support. Hope and colleagues (1998) also noted that incontinence and immobility were also factors in LTC placement; however, those conditions were not influencing factors in this study. Davey and colleagues (2004) concluded that repeated falls had a deleterious impact on the family. In this study,

452

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

falls were a worry but were also considered a ‘‘normal’’ part of the illness. The consequences of falls (unless they resulted in severe injury) seemed to be taken in stride. Previous studies also revealed that sleep disturbances increased caregiver strain/burden (Secker and Brown, 2005; Schur et al., 2005). However, this was not specifically mentioned by these participating caregivers. In this study, the caregivers benefitted from short periods of time away from caregiving but were often anxious and worried about leaving their relative with Parkinson’s disease for fear he or she would fall or would engage in disruptive behaviors that the substitute caregiver would not be able to manage. This finding is supported in the literature (Miller et al., 2001). These short periods of time, whether for running errands or for recreational purposes (e.g., seeing a movie), were considered a ‘‘break’’ by many caregivers. Yet, several still needed a true respite experience in which they could leave for a longer period of time, knowing that their relative with Parkinson’s disease was in good care. The caregivers also expected help from health care providers but thought this was often absent. Health care providers tended to focus on the medical needs of the persons with Parkinson’s disease and offered little acknowledgement of the overwhelming responsibilities of the caregiving role. Several caregivers reported that primary care providers rarely asked about their well-being or their needs, which made them feel their role as caregivers was devalued and prevented needed referrals for professional services such as counseling and respite. 7. 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 disabling illnesses, practitioners need to be more aware of the needs of the family unit and in particular, the primary family caregiver (Martı´nez-Martı´n et al., 2005). Conducting a formalized, systematic caregiver assessment at intervals throughout the chronic illness episode is essential to better understand the needs of the caregiver/care recipient dyad (D’Amelio et al., 2009; Lutz and Young, 2010; Raccichini et al., 2009). Existing formalized tools such as the Caregiver Burden Inventory (Novak and Guest, 1989), Bakas Caregiving Outcomes Scale (Bakas et al., 2006), or the Caregivers Count Too! Toolkit (Family Caregiver Alliance, 2006) can be used to assess caregivers’ needs and concerns. Assessment of caregivers at intervals throughout the illness trajectory would help to identify potential problems and to prepare caregivers for the progression of the illness. This type of anticipatory guidance to care-

givers could significantly aid them during their journey through the caregiving process and help to prevent premature institutionalization. Another intervention that health care providers must reinforce is formal respite care for caregivers of relatives with Parkinson’s disease. Respite can be a major source of support for caregiving families and can aid in maintaining longer home placements (Kosloski and Montgomery, 1995; Garces et al., 2010). 8. 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 in the study. Only 15% (n = 3) of the 20 caregivers in this study were male (husbands). Additional male caregivers were not accessible in the database despite several attempts to find them. The predominance of female caregivers may also have been due to the higher incidence (2:1 male/female ratio) of Parkinson’s disease among males (Van Den Eeden et al., 2008). In addition, only 7% (n = 6) of the individuals in the accessible data base covering the geographic region were ethnic minorities, and many were inaccessible when contacted. This resulted in lack of ethnic diversity in the sample. Future recommendations are to conduct additional research with a more ethnically diverse group of caregivers and a larger sample of male caregivers as this may add dimensions to the model. 9. 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 increased support and respite. In light of changes in health care funding policies and treatments for Parkinson’s disease that extend survivorship, additional caregiver studies are critically needed. Supporting caregivers to mitigate strain and adapt to the effect of disability on role functioning in the family can help this vulnerable group prevent premature institutionalization of the person with Parkinson’s disease. Conflict of interest None declared.

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

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. References AARP Public Policy Institute, 2009. Beyond 50.09 Chronic Care: A Call to Action for Health Reform. Retrieved from: http://www.aarp.org/ health/medicare-insurance/info-03-2009/beyond_50_hcr.html. Aarsland, D., Larsen, J.P., Tandberg, E., Laake, K., 2000. Predictors of nursing home placement in Parkinson’s disease: a population-based, prospective study. Journal of the American Geriatrics Society 48 (8), 938–942. Administration on Aging, 2008. Snapshot: National Family Caregiver Support Program. US Department of Health and Human Services. Retrieved from: http://www.aoa.gov/AoAroot/Press_Room/Products_Materials/ index.aspx. Administration on Aging, 2009. National Family Caregiver Support Program. Retrieved from The Administration on Aging: http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Caregiver/index.aspx#purpose. Andel, R., Hyler, K., Slack, A., 2007. Risk factors for nursing home placement in older adults with and without dementia. Journal of Aging and Health 19 (2), 213–228, doi:10.1177/0898264307299359. Answers4Families, 2007. When You Are Faced with the Nursing Home Decision. Retrieved from the Answers4Families website in partnership with the Nebraska Department of Health and Human Services and the University of Nebraska: http://nncf.unl.edu/family/eldercare/ housing/when-you-are-faced-nursing-home-decision. Bakas, T., Champion, V., Perkins, S.M., Farran, C.J., Williams, L.S., 2006. Psychometric testing of the revised 15-item Bakas Caregiving Outcomes Scale. Nursing Research 55 (5), 346–355. Buhr, G.T., Kuhibhatla, M., Clipp, E.C., 2006. Caregivers’ reasons for nursing home placement: clues for improving discussions with families prior to the transition. The Gerontologist 46 (1), 52–61. Caron, C.D., Bowers, B.J., 2003. Deciding whether to continue, share, or relinquish caregiving: caregiver views. Qualitative Health Research 13 (9), 1252–1271. Caron, C.D., Ducharme, F., Griffith, J., 2006. Deciding on institutionalization for a relative with dementia: the most difficult decision for caregivers. Canadian Journal on Aging 25 (2), 193–205. Charmaz, K., 2006. Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. SAGE Publications, Thousand Oaks, CA. Charmaz, K., 2009. Shifting the grounds: constructivist grounded theory methods. In: Morse, J., Stern, P.N., Corbin, J., Bowers, B., Charmaz, K., Clarke, A.E. (Eds.), Developing Grounded Theory: The Second Generation. Left Coast Press, Walnut Creek, CA, pp. 127–193. Cohen, C.A., Gold, D.P., Shulman, K.I., Wortley, J.T., McDonald, G., Wagon, M., 1993. Factors determining the decision to institutionalize dementing individuals: a prospective study. The Gerontologist 33 (6), 714–720. D’Amelio, M., Terruso, V., Palmeri, B., Di Benedetto, N., Famoso, G., Cottone, P., et al., 2009. Predictors of caregiver burden in partners of patients with Parkinson’s disease. Neurology Sciences 30, 171–174, doi:10.1007/s10072-009-0024-z.

453

Davey, C., Wiles, R., Ashburn, A., Murphy, C., 2004. Falling in Parkinson’s disease: the impact on informal caregivers. Disability and Rehabilitation 26 (23), 1360–1366. DeLuca, L.C., 2008. The Nursing Home Decision: How to Find the Best Way of Caring for Parents and Sick Loved Ones. Retrieved from: http://seniorcarefacilities.suite101.com/article.cfm/the_nursing_ home_decision#ixz z0HfWwVsTH&C. England, M., 2000. Caregiver strain: considerations for change. Nursing Diagnosis 11 (4), 164–175. Family Caregiver Alliance, 2006. Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers. Retrieved from: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid= 1695. Garces, J., Carretero, S., Rodenas, F., Aleman, C., 2010. A review of programs to alleviate the burden of informal caregivers of dependent persons. Archives of Gerontology and Geriatrics 50, 254–529, doi:10.1016/j.archger.2009.04.012. Giunta, N., Parrish, M., Adams, S., 2002. Parkinson’s Disease Caregiving: A Descriptive Report. Family Caregiver Alliance, San Francisco, CA. Glaser, B.G., Strauss, A.L., 1967. The Discovery of Grounded Theory. Aldine, Chicago. Goetz, C.G., Stebbins, G.T., 1993. Risk factors for nursing home placement in advanced Parkinson’s disease. Neurology 43, 2227–2229. Guba, E.G., Lincoln, Y.S., 1989. Fourth Generation Evaluation. SAGE Publications, London. Hope, T., Keene, J., Gedling, K., Fairburn, C.G., Jacoby, R., 1998. Predictors of institutionalization for people with dementia living at home with a carer. International Journal of Geriatric Psychiatry 13, 682– 690. Kao, H.F., Stuifbergen, A.K., 1999. Family experiences related to the decision to institutionalize an elderly member in Taiwan: an exploratory study. Social Science & Medicine 49, 1115–1123. Kosloski, K.D., Montgomery, R.J.V., 1995. The impact of respite use on nursing home placement. The Gerontologist 35, 67–74. Levine, C., 2008. Family caregiving. In: Crowley, M. (Ed.), From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns. The Hastings Center, Garrison, NY, pp. 63–68. Lutz, B.J., Young, M.E., 2010. Rethinking intervention strategies in stroke family caregiving. Rehabilitation Nursing 35 (4), 152–160. Martı´nez-Martı´n, P., Benito-Leo´n, J., Ma, F.A., Catalon, J., Pondal, M., Zamarbide, I., et al., 2005. Quality of life of caregivers in Parkinson’s disease. Quality of Life Research 14 (2), 463–472. Miller, B., Townsend, A., Carpenter, E., Montgomery, R.V., Stull, D., Young, R.F., 2001. Social support and caregiver distress: a replication analysis. Journal of Gerontology: Social Sciences 56B (4), S249– S256. Mittelman, M.S., Haley, W.E., Clay, O.J., Roth, D.L., 2006. Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology 67, 1592–1599. National Alliance for Caregiving, 2004. Care for the Family Caregiver: A Place to Start (Brochure). Retrieved from the National Alliance for Caregiving: http://immn.org/nac/pdf/resources/CFC.pdf. National Alliance for Caregiving, 2009. Caregiving in the U.S. 2009. National Alliance for Caregiving in Collaboration with AARP. Retrieved from: http://www.caregiving.org/data/Caregiving_in_ the_US_2009_full_report.pdf. NVivo Qualitative Data Analysis Program (Version 8.0) (Computer Software). QSR International, Melbourne, AU, 2008. Novak, M., Guest, C., 1989. Application of a multidimensional caregiver burden inventory. The Gerontologist 29 (6), 798–803. O’Brien, E., Elias, R., 2004. Medicaid and Long-term Care. Kaiser Commission on Medicaid and the Uninsured, Washington, DC. O’Shaughnessy, C.V., 2008. The Basics: Older Americans Act of 1965. Retrieved from the National Health Policy Forum website at George Washington University: http://www.nhpf.org/library/details.cfm/ 2626. Raccichini, A., Castellani, S., Civerchia, P., Fioravanti, P., Scarpino, O., 2009. The caregiver’s burden of Alzheimer patients: differences between live-in and non-live-in. American Journal of Alzheimer’s Disease and Other Dementias 24 (5), 377–383. Rappoport, A., Lowenstein, A., 2007. A possible innovative association between the concept of inter-generational ambivalence and the emotions of guilt and shame in care-giving. European Journal of Ageing 4, 13–21. Schatzman, L., 1991. Dimensional analysis: notes on an alternative approach to the grounding of theory in qualitative research. In: Maines, D.R. (Ed.), Social Organization and Social Process Essays in Honor of Anselm Strauss. Aldine De Gruyter, New York, pp. 303–314.

454

M. Abendroth et al. / International Journal of Nursing Studies 49 (2012) 445–454

Schur, D., Whitlatch, C.J., Clark, P.A., 2005. Issues and interventions: beyond the chi-square. Case Management 10 (2), 65–71. Scott, J.A., 2006. Informal Caregiving. An Issue Brief Prepared for Blaine House Conference on Aging. University of Maine Center on Aging. Retrieved from: http://www.umaine.edu/mainecenteronaging/ documents/issuebriefinformalcaregiving.pdf. Secker, D.L., Brown, R.G., 2005. Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: a preliminary randomized controlled trial. Journal of Neurology Neurosurgery Psychiatry 76, 491–497. Strauss, A.L., 1987. Qualitative Analysis for Social Scientists. Cambridge University Press, New York. Strauss, A., Corbin, J., 1998. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 2nd ed. Sage Publications, Thousand Oaks, CA. Thommessen, B., Aarsland, D., Braekhus, A., Oksengaard, A.R., Engedal, K., Laake, K., 2002. The psychosocial burden on spouses of the elderly

with stroke, dementia and Parkinson’s disease. International Journal of Geriatric Psychiatry 17, 78–84. Van Den Eeden, S.K., Tanner, C.M., Bernstein, A.L., Fross, R.D., Leimpeter, A., Bloch, D.A., Nelson, L.M., 2008. Incidence of Parkinson’s disease: variation by age, gender, and race/ethnicity. American Journal of Epidemiology 157 (11), 1015–1022, doi:10.1093/aje/kwg068. VanDerhei, J., Copeland, C., 2003. Can America Afford Tomorrow’s Retirees: Results from the EBRI-ERF Retirement Security Projection Model (Issue brief # 263). Employee Benefit Research Institute, Washington, DC. Weintraub, D., Comella, C.L., Horn, S., 2008. Parkinson’s disease—Part 1: pathophysiology, symptoms, burden, diagnosis, and assessment. American Journal of Managed Care 14, S40–S48. Willis, A.W., Evanoff, B.A., Lian, M., Criswell, S.R., 2010. Geographic and ethnic variation in Parkinson disease: a population-based study of US Medicare beneficiaries. Neuroepidemiology 34, 143–151, doi:10.1159/ 000275491.