CAREGIVER MEANING: A Study of Caregivers of Individuals with Mental Illness.
Mental illness (Evaluation)
Foster home care (Evaluation)
Rhoades, Donna R.
McFarland, Kay F.
|Publication:||Name: Health and Social Work Publisher: National Association of Social Workers Audience: Academic; Professional Format: Magazine/Journal Subject: Health; Sociology and social work Copyright: COPYRIGHT 1999 National Association of Social Workers ISSN: 0360-7283|
|Issue:||Date: Nov, 1999 Source Volume: 24 Source Issue: 4|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
The study discussed in this article examined caregiver meaning.
Study participants were individuals paid and supported by the South
Carolina Department of Mental Health Homeshare program to provide care
in their home for an individual with severe mental illness. A structured
questionnaire and interviews were used to develop categories and themes
about caregiver meaning. Quantitative and qualitative analyses yielded
three categories of caregiver meaning: other-directed-altruistic,
self-directed-self-actualization, and existential-purpose in life.
Caregivers most often referred to altruistic themes, with the most
common one being "helping others." The next most common themes
were "home and family" and "making a difference."
Caregiving difficulties also were categorized. Social work implications
Caregiving, like most forms of work, gives life purpose and also causes stress. For those caring for individuals with serious, persistent mental illness, stress or burden often arises from the clients' illnesses. Complications of mental illness include deficits in coping, extreme dependency, difficulties in interpersonal relationships, motivational and perceptual challenges, and vocational limitations (Liberman, 1988). Other challenges come from the clients' institutionalized behaviors, low energy and motivation, and atypical perceptions. Sometimes disability emanates from the social reactions to mental illness rather than the illness itself (Gruenberg, 1982).
The demands of taking care of an individual with mental illness stem from many and varied sources (Clark, 1994; Jones, Roth, & Jones, 1995; Kuipers, 1993; Schene, Tessler, & Gamache, 1994; Steinwachs, Kasper, & Skinner, 1992; Vaddadi, 1996). Montgomery, Gonyea, and Hooyman (1985) described caregiver burden as objective, subjective, or both. One group of researchers found that age and income of the caregiver were the best predictors of subjective burden (Biegel, Milligan, Putnam, & Song, 1994). Objective burden was associated with caregiver confinement. Solomon and Draine (1995b) examined the relationship of stress, coping and adaptation, and subjective burden of family members of individuals with mental illness.
Having a client who has mental illness live in a household presents challenges. Although caregiver burden increased when the client lived with the caregiver, different sets of issues arose when the person receiving care lived in a separate household (Jones et al., 1995; Solomon & Draine, 1995a). Those in shared households had greater activity restriction but less relationship strain (Deimling, Bass, Townsend, & Noelker, 1989). Fetterman and Chamberlain (1994) found that provider families disliked dealing with client symptoms such as mood swings and memory deficits. Morgan, Eckert, and Lyon (1995) reported that almost a third of the caregivers they questioned identified client behavior problems as the most stressful feature of their job. Poulshock and Deimling (1984) concluded that professionals who support caregivers need to consider the caregiver's interpretation of impairment of activities of daily living, cognitive incapacity, disruptive behavior, and lack of sociability. Also, Morgan et al. found that pr ivacy and interpersonal conflict caused caregivers mental or physical stress.
Most caregiver studies consider family caregiving a burden. Less is known about the benefits of caring for individuals with mental illness and agency-supported caregiving. Noonan, Tennestedt, and Rebelsky (1996) gathered qualitative data from 48 family caregivers in Massachusetts. These individuals who took care of elderly people reported benefits such as satisfaction, reciprocity, companionship, and personal growth. However, Horwitz, Reinhard, and Howell-White (1996) noted that caregiving can be viewed as a process of mutual exchange. These authors showed that the satisfaction of caregivers is strongly associated with how much support the individual with mental illness receives. The caregivers in a study by Fetterman and Chamberlain (1994) cited other-directed motivations and benefits, including helping others and making a difference in other people's lives. Morgan et al. (1995) also noted altruism as a recurring theme in interviews with small board-and-care operators.
This article focuses on caregiver meaning in an agency-supported program for individuals with mental illness. It also addresses some stresses or burdens associated with such care. Noonan et al. (1996) regarded caregiver meaning as those values and beliefs that enable caregiving roles, benefits, and outcomes to be viewed in a positive way and for the greater good. In this article caregiver meaning is subdivided into themes derived from a Caregiver Questionnaire and caregiver interviews. Care providers described what motivated them to care for a person with serious mental illness, the rewards they received from their work, and the burdens that occurred with providing 24-hour care.
The caregivers in this study offered foster care in the caregiver's home. This care was provided through the South Carolina Homeshare Program (begun in 1992), which provided an alternative residential environment to chronic psychiatric hospitalization for individuals with serious, persistent mental illness. Deci and Mattix (1997) reported that one other state, Massachusetts, used the Homeshare model of care for individuals with mental illness. When this study was undertaken, nine programs across the state operated under a uniform set of standards and guidelines. The caregivers each received a monthly stipend to sup-port a person with serious mental illness in their homes. The individual with mental illness became a member of the caregiver's family and took part, as much as possible, in the family social activities (Mattix & Deci, 1994).
Dias (1998) reported South Carolina Homeshare client demographics for the same clients cared for by the caregivers described in this article. At the time of program entry, client ages ranged from 18 to 90 years of age with a mean age of 61. Most of the 68 South Carolina Homeshare clients were women (68 percent), and about one-third (32 percent) were men. No statistics regarding client race were reported. The average education level was 10 years, ranging from zero to 18 years of schooling. Most of the clients had psychotic illnesses, with more than 70 percent having schizophrenia or schizoaffective disorder. About 13 percent had, in addition, an organic brain disorder. All had required frequent or long-term hospitalizations. The average individual length of stay per admission before Homeshare placement was 601 days with an average of about seven admissions per lifetime.
All active caregivers (N = 85) in the South Carolina Homeshare program were invited to complete a Caregiver Questionnaire. Sixty-eight of these caregivers had a permanent client who lived with them; 17 provided frequent respite care. The Institutional Review Board approved the study, and all caregivers voluntarily gave their written, informed consent. The researcher made it clear that caregivers were free to decline if they did not wish to participate. Caregivers were assured that their answers would remain anonymous and would have no bearing on their standing as a contractor with the South Carolina Homeshare Program. Sixty-one of the 85 South Carolina Homeshare caregivers participated in the study.
The local Homeshare program coordinator or representative administered three inventories during regularly scheduled meetings held at separate Homeshare program offices. Results relating to the other survey instruments are being prepared for publication elsewhere. Each participant entered the initial of their last name and the last four digits of their social security number on the questionnaire. No names were associated with the identification numbers so that all responses remained anonymous and confidential. Participants were permitted to withdraw from the study anytime without prejudice. The questionnaire, constructed by the authors and used for the first time in this study, consisted of three short-answer inquiries: (1) give at least two reasons why you do caregiving; (2) give at least two rewards or benefits you gain from caregiving; and (3) give at least two of the most difficult aspects of caregiving for you.
To learn more about how caregivers felt about their roles, the first author decided to conduct face-to-face interviews with Homeshare caregivers across the state. These interviews were to provide an opportunity for additional insight into the data collected on the Caregiver Questionnaire. Also, caregivers could talk more fully about their caregiving experiences.
Individuals who were willing to be interviewed about their caregiving experiences were solicited from among active South Carolina Homeshare caregivers, both permanent and respite caregivers. To encourage candidness, interviews were conducted in a private room at the Homeshare program office rather than in the home. The researcher, who was not associated with the local Homeshare program, conducted interviews privately and individually.
After the providers were asked to tell something about themselves, the researcher asked the providers five questions: (1) Why did you become a Homeshare provider? (2) What has being a Homeshare provider meant to you personally? (3) How has being a Homeshare provider made a difference in your life? (4) Tell me about a highlight of your Homeshare experience. (5) What is your greatest reward in being a Homeshare provider. The researcher audiotaped the interviews and prepared transcriptions for analysis.
The primary researcher (first author) and two other investigators did the theme analysis, working independently and then together to reach a consensus on differences. A coding sheet was developed, beginning with the six categories suggested by Noonan et al. (1996). The six beginning categories were gratification--satisfaction, family responsibility--reciprocity, friendship-company, doing what needs to be done, caring personality, personal growth, and improved relationship. These categories were revised as divergent themes emerged. Once theme categories were determined, transcripts of caregiver interviews were analyzed using these same themes.
Sixty-one caregivers agreed to participate in the study and answer the Caregiver Questionnaire. About two-thirds (n = 40) of the caregivers were African American, and one-third (n = 19) were white. Two were of unstated racial identity. Most were women (16 white, 39 African American, two unknowns); four were men (three white and one African American). The mean age was 53 years (Table 1). All participants answered the first two questions that asked them to give at least two reasons why they did caregiving and at least two rewards or benefits gained from caregiving. When caregivers were asked to list at least two difficult aspects of caregiving, 12 did not list any difficulties.
Three categories of caregiver themes associated with meaning were formulated: (1) other-directed or altruism, (2) self-directed or self-actualization, and (3) existential or purpose in life (Table 2). Subcategories called themes were associated with each category (Table 2). Caregivers most often mentioned other-oriented or altruistic themes. The prominent reason for doing caregiving was "helping people." These caregivers said "I like helping people" or "I like dealing with people?' Several said, "I like to take care of people, especially the sick," or "I always have taken care of the sick and elderly."
Others expressed the importance of home and family as evidenced in statements such as "The lady I have is like a granny to us" and "I'm able to give someone a good home." A common reward was "seeing the change in the clients" and "watching people that couldn't do for themselves do for themselves again with a little help?" The nurturing and empowerment aspects surfaced in statements such as "seeing [the client] improve," and "seeing a difference in the person as you care for them." Some simply stated they enjoyed the interpersonal aspects of the job.
The second most common category consisted of self-actualization or self-oriented themes. Several said the extra income was an important benefit that helped them have more "independence." Others stated, "It makes me feel grateful for what I have," or "I get satisfaction from knowing I helped another." Reciprocity was an issue for some as demonstrated by these statements, "I like the love I get back when I show love," and "I love to give because I will receive." Companionship was a benefit to some, and others liked "feeling needed." The personal growth theme evidenced itself in statements such as "I have learned much about myself in the past three years" and "I have learned to have more patience." Some said they used previously acquired skills and talents and continued the type of work they had done before retirement. One said, "I have no hangups regarding mental illness" and another stated, "I enjoy a challenge."
A third group of themes fell into the purpose in life or existentially oriented category. One person said, "I wanted to do something meaningful in my retirement?" "Being a part of something meaningful" brought fulfillment to other caregivers. Statements such as "God has given me something on the inside that I may help another along the way" and "God Wants us to help each other" typified religious themes. Another felt that "caring for others is part of my calling?" Others cited love, empathy, and caring as important values in life. "Showing that you care is important, it is a mission in my home, getting out of myself," and keeping "focused on what's important in life" echoed spiritual themes. "Seeing people out of institutions" was an important societal and community benefit.
Caregivers also were asked to list at least two difficult aspects of caregiving. Five difficulties associated with agency-supported caregiving listed in the order of citation frequency are given in Table 3. Thirteen caregivers remained silent on this issue. Client disability or illness was the most difficult aspect of caring for individuals with serious, persistent mental illness; more than a third fell into this category. Caregivers cited both physical and mental disability issues. One person said that dealing with "incontinence" was difficult, and some individuals cited the "unpredictability of client's condition" and "difficult behaviors." Others listed both client and provider adjustment issues, saying it was difficult to "get used to the client's behavior," and it was hard to deal with the client's "inability to adjust to society compared to living in an institution." The severity of the mental and physical illnesses and the demands this placed on the caregivers often played a significant role in the di fficulties associated with client disability.
The second most often cited difficult aspect of providing care through the agency-supported program was job challenge. A little less than a third (31 percent) of the answers fell into this category. Several individuals said bureaucracy caused difficulty in "accessing resources" and that the Homeshare staff "expected a lot" from the caregivers. Working with transportation issues was a problem also. Time pressure and "busyness" involving lots of appointments also were specified.
Some caregivers stated that getting their own needs met presented a problem. They referred to "needing time for myself" and "confinement." Some acknowledged that they felt bothered by the intrusions into family life as indicated by comments like "making the client understand I need to share my life with others" and "changing my way of cooking?" Sometimes respondents said they felt inadequate, needed more "patience" or had trouble understanding the client's illness.
Loss through death, illness, or transfer caused difficulty for some caregivers. When a client was moved to another home or the client died or the client experienced significant physical or mental decline, caregivers grieved. One caregiver reported that she had "difficulty trusting respite caregivers" to take care of her client when she [the provider] was gone or taking a break. Others said it was difficult "seeing a client return to the hospital" or "watching that person [client] leave you to go to a nursing home."
Other difficult aspects were related to interpersonal relationship issues. Adjustment and client fit presented challenges such as "getting to know the person and what they like." One provider said it was difficult taking care of someone who "does not eat or believe the way the family does." Clients often do not respond in reciprocating ways. This causes difficulty in getting them "to understand you and why you want them to do the things they need to do" or "not seeing a lot of progress from the person cared for." Respondents also expressed concerns about communicating with clients, that is, "getting cooperation from the client" and "trying to help the client do something they don't want to do?' Sometimes caregivers said it was hard "correcting someone older--telling them what's wrong?"
Caregivers who voluntarily responded to a request for interviews about Homeshare were interviewed privately and individually. Interviews obtained from three regions of the state, the upstate, the midlands, and the low country, totaled 14, 13 women and one man. The mean age of the interviewees was 53 years. Four were white and 10 were African American.
Interviews produced additional insight into the caregiver themes identified through the Caregiver Questionnaire. Several open-ended questions furnished an opportunity to learn more about the provider, why she or he became a provider, what being a provider meant to that individual, a highlight of their Homeshare experience, and their greatest reward. Transcript analysis determined that the themes identified on the Caregiver Questionnaire were corroborated in the interviews. Although a particular predominant category of themes could be identified in each interview, all contained themes from at least two of the three categories (Table 2).
Altruism or Other-Directed Themes. When Homeshare caregivers answered questions about what motivated them to be caregivers, their answers most frequently referred to helping or giving to others. In the interviews the length of time devoted to telling about giving or helping others illustrated the prominence that other-oriented themes held for the Homeshare caregivers. Caregivers most frequently told their stories in altruistic terms. They spoke less often about self-oriented themes, although these themes were present. Purpose-in-life, also called existential, themes were addressed least often. The fervor with which most caregivers spoke underscored their sense of purpose and altruistic orientation.
Altruistic themes such as helping people, caring for dependent animals or individuals, making a difference in another's life, fostering home and family, and cultivating the interpersonal aspects of the relationship surfaced in many stories. Helping others who are dependent and fostering a sense of family emerged as important caregiving values. Even when self-actualization and purpose-in-life themes were more prominent in Homeshare caregivers' stories, altruism still appeared as an important theme.
Self-Actualization or Self-Oriented Themes. Some content of the caregiver interviews fell into the self-actualization category. Although the income derived from providing care helped to promote financial security, caregivers in this study spoke more often of other aspects of their work. In one caregiver interview, finances, satisfaction, companionship, and work challenge were among the themes that could be heard as one woman talked about her caregiving experience. For example, she said that in her work as a caregiver she could use skills she had cultivated all of her life as a mother and hospital worker. She valued being able to use her talents. Although she had not previously worked with individuals with mental illness, she believed they had a lot to offer her, and she was willing to learn from them. In turn she brought to her work, abilities she had acquired through past work experience and raising her own children. She provided respite services for clients and made everyone feel welcome in the home where she had been born and raised.
Purpose-in-Life or Existential Themes. A retired Salvation Army officer's story embodied the third category of caregiver meaning themes. Although he touched on altruistic and self-actualization themes, the existential or purpose-in-life themes, such as religion, society, caring, and life meaning, permeated the content and manner in which he presented his caregiver role. This individual described caregiving through Homeshare as an extension of his 30-plus years of Salvation Army ministry. He reported that his client became more self-reliant during 10 months he had lived with the caregiver's family. Helping individuals "get into their own lives" has been the lifelong ministry of this caregiver. He stated that Homeshare was a ministry to help needy individuals regain a place in the community.
Self-fulfillment and existential issues form a basis for looking at caregiver meaning. In addition, a third category, altruism or an other-directed focus, rose to prominence from the caregiver interviews and the Caregiver Questionnaire responses. Seven themes allotted to each of three categories: (1) altruism, (2) self-actualization, and (3) purpose in life, produced 21 themes of caregiver meaning. These categories and themes represented and summarized the meaning caregivers assigned to the caregiver role.
As an expression of a person's innermost being, spirituality moves a person beyond the normal confines of life into a sense of wholeness with the universe and purposefulness (James & James, 1991). In the Homeshare interviews, caregivers less often spoke about purpose in life, a notion often linked to spirituality; about 15 percent of the answers to the Caregiver Questionnaire related to this category. The themes that emerged included life-meaning, religion, caring, love, empathy, spirituality, and society--community. Purpose-in-life expressions could have been inhibited by either questionnaire design or interviewer interference. Perhaps the questions themselves did not fully elicit responses related to meaning. Another possibility is that cultural norms prohibited or impeded discussing these themes.
In this study, caregiver meaning can be seen as a mediator of caregiver burden. When asked to talk about their caregiving role, these caregivers focused on the rewards and benefits in terms of altruism, self-fulfillment, and purpose in life. Although these agency-supported caregivers acknowledged the difficult aspects of their roles as challenges inherent to the job, they wrote and spoke enthusiastically about what motivated and kept them going, the personal satisfaction derived from caring for another human being.
Issues related to Caregiver Questionnaire use raise the possibility of multiple interpretations of results. Overlaps in definition arose in the Caregiver Questionnaire analysis. Similarities appeared among the categories and themes developed. Several provider statements fell into more than one category, resulting in an overlap of terms. For instance, a statement such as "getting up early to help client" could be seen as related either to job challenge or provider needs. "Helping and caring for others helps me" suggests both helping others and personal satisfaction.
In addition, use of self-report instruments such as the Caregiver Questionnaire affected objectivity and accuracy. Participants tended to interpret questions on the basis of their own knowledge and presented themselves with either positive or negative bias. The independent assignment of answers on the Caregiver Questionnaire to predetermined categories and themes by three researchers, however, reduced the bias.
Face-to-face interviews have the same limitations with the additional interviewer factor. Although the interviewer tried to be as objective as possible, personal knowledge and biases may have affected the quality of listening and reporting. The use of audiotapes with accompanying transcription analysis helped reduce this bias. In addition, a sample of only 14 caregivers was interviewed. Thus, altruism, meaning, and purpose-in-life expressions could have been affected by questionnaire design or interviewer bias.
Although Homeshare caregivers were not employees of the program, they received a stipend to support the client in their care. This contributed an incentive for the caregiver to become involved with clients who typically require high levels of care. The financial aspect is a major difference between agency-related caregivers and other types of caregivers. The premise of this study accepted financial support as part of the program design without evaluating its effect on the caregiver role.
Social Work Implications
Results of this study will help social workers understand agency-supported caregiving. This understanding should enable social workers to provide the needed support services for these caregivers. Ultimately, the goal is to empower caregivers by reinforcing feelings of meaningfulness and purpose. The mental ability to step away from the immediate situation into a transcendent position would relieve caregiver burden and provide new motivation and perspective. Thus, social workers could assist caregivers by helping them find ways to express self-understanding and purpose in life.
When caregivers are dealing with client disabilities, social workers can lend personal support, facilitate support or educational groups, and make referrals to professionals such as home health nurses, occupational therapists, respite care providers, and mental health counselors. Educational groups could focus on behavior management approaches and self-care for caregivers. The tendency for caregivers to direct their attention so fully toward others has both positive and negative implications. Social work interventions including support groups could be designed to help caregivers discover a stronger sense of self and their own needs as caregivers.
Psychological support and educational programs about dealing with loss and grief can help caregivers understand their own concerns in these areas. For example, a seminar on death and dying, bereavement groups, or remembrance rituals might be started. Designing interventions about each of the difficult aspects of caregiving identified in this study would produce focused continuing education for caregivers.
Study demographics indicated that in this program women provided most of the care. Also, a majority of these women were African American. Therefore, caregiving programs and interventions must display cultural and gender-issue awareness and sensitivity. In addition, further study should be undertaken to explore the implications of potential racial and gender imbalance in agency-supported caregiving programs.
Agency-supported caregiving programs result in both stress and reward for the caregivers. Although the caregivers in this study reported some difficult aspects of their work, they also shared stories that spoke of the benefits they received from caregiving. This caregiving context offers an opportunity for professionals to learn more about caregiver and community benefits while helping individuals with mental illness return to meaningful lives in their communities.
ABOUT THE AUTHORS
Donna Rhoades, PhD, is instructor, Department of Family and Preventive Medicine, University of South Carolina, 6 Medical Park, Columbia, SC 29203. Kay F. McFarland, MD, is professor, Department of Medicine, University of South Carolina, Columbia.
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Caregiver Demographics (N = 61) Women Men Total Race n % n % n % African American 49 68 1 25 40 66 White 16 28 3 75 19 31 Unstated race 2 4 0 0 2 3 Total gender 57 93 4 7 61 100 Age Mean 52.8 Range 31 to 79 Mode 62 Themes of Caregiver Meaning (N = 61, n = 262) Altruism Self-Actualization (52% of n) (33% of n) Helping people (42) Work-financial security (22) Caring for dependents (24) Gratification-satisfaction (18) Home and family (23) Reciprocity (15) Nurturance or empowerment (21) Personal growth (11) Interpersonal relationship (13) Work challenge (9) Making a difference (7) Companionship (9) Dealing with people (6) Talent and ability use (4) Altruism Purpose in Life (52% of n) (15% of n) Helping people (42) Love (14) Caring for dependents (24) Life meaning (6) Home and family (23) Spirituality (6) Nurturance or empowerment (21) Religious (4) Interpersonal relationship (13) Caring (4) Making a difference (7) Society-community (4) Dealing with people (6) Empathy (2) Difficult Aspects of Caregiving (N = 61, n = 69) Theme Frequency % Client disability 25 37 Job challenge 22 31 Caregiver needs 13 19 Client loss 5 07 Interpersonal aspects 4 06 Total responses 69 100 Caregivers listing no difficult aspects 12 20
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