The Meaning of Caregiving Felecia Grier Wood, DSN RN CS
Thepurpose of the research reported in this article was to describe the experiences of caregivers who were providing care to an individual who recently had been discharged from a physical rehabilitationprogram. The researchwas aimed at answering the question, “Whatis the meaning ascribed to the caregiver role?” A convenience sample of 10 caregivers was interviewed.Most of the caregivers (80%)werefemale; all were relatives of the individual requiring care. These family members believed that caregiving was their responsibilityby virtue of relationship,or that no one else was available to assume the caregiving role. Many had no assistancefrom outside agencies,and most related that caregiving entailedfull-timeresponsibility.Many also continued in other roles such as employee, homemaker, and parent.
he term caregiver no longer describes only healthcare providers. Increasingly,individualsand familieshave assumed the caregiver role for family members or friends suffering from chronic illness or disability,many of whom are elderly. The U.S. Department of CommerceBureau of the Census (1986)compiled data estimating that approximately 110 million people in the United States are afflicted with one or more chronic illnesses. Americans 65 years of age or older constitute more than 11% of the population today, and this percentage is expected to continue to increase as we move into the next century (Robinson, 1986). Many of the participants in physical rehabilitation programs are elderly and experience chronic illness in addition to the problem that led them to seek physical rehabilitation. The rehabilitation nurse, as a coordinator of care, helps patients and families learn to provide a multitude of nursing skills in the home. Many ill and disabled elderly people have been able to remain in the community because of services provided to them by their families (Hawranik, 1985). Robinson (1986) indicated that the bulk of the care provided to the ill and disabled was not distributed among family members; rather, most of the basic service was provided by adult women in the family. Newman (cited in Robinson and Thumher, 1979)reported that when the disability of a parent required extended care, only two alternatives were considered: (a) moving the individual to the home of a relative, or (b) moving the individual to a nursing home. Prohibitivecosts of a nursing home stay limit that choice even further for most families. Oliver (1985), in describing her own experiences as a caregiver of an ill family member, wrote that “families have had to come to terms with the fact that admission to ahospital or home is now very unlikely to relieve them of the burden of care. Only death, of the carer or dependent, will relieve that burden” (p.
Address correspondence to Felecia Grier Wood, DSN RN CS, Associate Dean, The University of Alabama, Capstone College of Nursing, PO Pox 870358, Tuscaloosa,AL 354870358.
23). Such may not always be the case, because some individuals may recuperate to the point where independent living or minimal supervision is required; however, for many, death is the only respite. Literature review: Defining the boundaries of care Leininger (as cited in Rosenbaum, 1986) defined care as “supportive actions that assist, support, or help another person or group with evident or anticipated needs to improve a human condition or lifestyle” (p. 414). The definition is all-encompassing and involves a complete assumption of responsibilities and activitiesthe individualis unable to perform independently. This may range from grocery shopping to all activities of daily living, and may vary from one day to the next depending upon the extent of physical and/or mental disability. Bloch (1984) identified seven factors that affect the competence of the family members as caregivers: the ability to (a) shift roles flexibly,(b) process painful feelings,(c) communicate freely and appropriatelywith healthcare providers, (d) observe the physical functioning of family members, (e) tolerate disability, (f) deal with body products or surgical wounds, and (8) adequatelymourn losses. Hawranik (1985) identifieda number of factors from the literature that may influence the coping ability of a caregiver: (a) family relationships, (b) length of caregiving period, (c) gender, (d) age, (e) finances, (f) developmental tasks of the child and parents,and (8) the demographic changes taking place (e.g., moving, changing jobs). The complexityof the caregiver role deserves attention,and, to date, little research has been conducted to ascertain the needs andexpectationsassociatedwith thatrole. Hinds (1985)assessed the needs of families as they provided care to patients with cancer at home. Interviews revealed that these families needed assistancewith the provision of physical care to their loved one, the development of coping strategies, and psychosocial needs such as expression of fear. Unfortunately, these family members did not recognize the need to consult professional caregivers. Phillips and Rempusheski (1986) used the grounded-theory approach to generate a theoreticalmodel describingthe dynamVol. 16, No. 4mehabilitation NursindJul-Aug 1991/195
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ics of the quality of family caregiving, the relationships among behaviors of family members, and potential needs for nursing intervention. Identification of caregivers at high risk for providing less than optimal care to their family member may be achieved through further testing and refinement of this model. This study was conducted to give further definition to the complex role of the family caregiver and to identify particular needs of that caregiver.
Purpose of the study As professional healthcare providers accustomed to dealing with the many intricacies of the caregiver role, nurses can detect and appreciate subtle improvements in a patient’s condition. However, the rehabilitation nurse must realize that while family caregivers are grateful for all improvements,they should not focus on those improvements to the exclusion of learning to deal with the less positive changes. How must the caregiver alter his or her personal and/or professional life? Why become a caregiver?What are the rewardsand frustrations associated with caring for a loved one following a period of intense physical and psychosocial rehabilitation? These are just a few of the many questions facing caregivers. Therefore, the purpose of the research reported here was to describe the activities and the inherent meaning of those activities involved in the caregiver role. The research was directed at answering a global question: What is it like to be a caregiver? More specifically, what activities are performed by the caregiver of an individual who has been discharged from a physical rehabilitation program within the last 2 months? What is the meaning of those activities? The following definitions will help clarify the meanings of terms as used in this study. Caregiver-an individual (family member or significant other, in this study) who assumes primary responsibility for providing “supportive actions that assist, support, or help another person or group with evident or anticipated needs to improve a human condition or lifestyle” (Leininger, cited in Rosenbaum, 1986, p. 414). Meaning-subjective expression of an occurrence. Role-behaviors performed to fulfill an expectation of self or others. Physical rehabilitation program-interdisciplinary provision of intensephysical, psychosocial, and educational activities to individuals who have experienced illness and self-care limitations, for the purpose of promoting independent living. As a result of the qualitative approach of this research, the following assumptions were made: 1. All perspectives of the caregiver being interviewed are valuable (Taylor & Bogdan, 1984). 2. Theresearcherusing a qualitativeapproach does not attempt to control or manipulate the individuals of interest to the study (Leininger, cited in Rosenbaum, 1986). Methodology The phenomenologicalapproach to qualitative research was used to gather data. The focus of the research was directed at
answering the question, “What is it like to have a certain experience?” (Field & Morse, 1985, p. 27), the experience in this case being caregiving. Selecting the study subjects: The researchers identified individuals who required a caregiver and who had been discharged within the last 2 months from a 35-bed physical rehabilitationprogram aligned with aregional medical center in the southeastern United States. The period of 2 months was selected because it was believed to be sufficientto enable these individuals’ caregivers to fully assume the responsibilities associated with the role. As approximatelythree to five patients are discharged each week from this program (or 12 to 20 patients per month), the sample size of 10was selected to assure that the caregiver was interviewed no less than 2 months following the patient’s discharge from the program. Names of primary caregivers were provided by nurses delivering care to the individuals who were enrolled in the program, after consent had been obtained from the patients to release names. No attempt was made to control for the level of supervision the caregiver provided to the individual. The method of data collection was a semistructured interview conducted in the subjects’ residences. These were not necessarily the subjects’primary homes, as the requirements of caregiving may have necessitated a temporary move. All interviews were recorded on audiotape following verbal and written consent to participate in the study. The interview began with a global question; other questions on the interview schedule were included only if the global question did not elicit statements in areas of interest (see Table 1). Although in true phenomenologicalresearch only one question is usually asked to elicit data, additional questions listed in the tool were included in the data collection if answers to them were not provided as a result of the initial question. Each interview was expected to last approximately 1 hour. All interviews were conducted by a research assistant trained by the researcher. Analysis of the data was accomplishedby identifyingthemes within the transcribed tapes and coding them according to categories established during data analysis.
Findings Demographics: Eight (80%) of the 10 caregivers interviewed were female, and all were relatives of the individual requiring care. Three caregivers were wives; 2 were daughters; and the 5 remaining caregivers were a granddaughter,a daughter-in-law, a mother, a son, and a husband. Nearly all of the individualsrequiring care (9, or 90%) were elderly; one mother cared for her chronically ill daughter who was in her 30s. Many of the persons requiring care (7, or 70%) had had strokes; 2 of these individuals were also insulin-dependent diabetics, and another of the stroke victims required gastrostomy feeding. The other recipients of care needed assistance as a result of a spinal tumor (1), fractured hip (l), or Parkinson’ssyndrome(1). Nine of the caregivers lived in the same residence as the person requiring care; the other caregiver spent days at her mother’s home and returned to her own home at night. Two caregivers moved in with their ill family member, and 3 moved the ill
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family member into their home. The 4 individuals caring for their spouses remained in their family home. Attitudes toward caregiving: These family members believed that caregiving was their responsibility by virtue of relationshipor because no one else was available to assume the caregiving role. Eight of the 10 caregivers interviewed said they were the only person in the family who could provide care-or were simply the only person in the family. One wife said, “It’s my husband. I remember what I promised-till death Table 1. Interview Questions Global Question What .is the meaning of the activities you perform as the caregiver of an individual who was discharged from a physical rehabilitation program 2 months ago? Specific Questions 1. Howwasitdecided thatyou would betheprimarycaregiver? 2. Describeyour daily activities prior to assuming the caregiver role. Are you continuing all those activities? Who has assumed the activities you can no longer perform? 3. Did you prepare for these changes? How? 4. How many hours each day are devoted to caregiving? Is this more than you had anticipated? Do you anticipate this time increasing or decreasing over the next 6 months? 5. What is your relationship to the person receiving care? 6. How does this relationship affect your caregiving? 7. Who assists you in your caregiving role? 8. What do you do to care for yourself now that you have assumed this role? 9. Have you ever done this before? For same person? What is different? What is similar? 10. Are you receiving any regular assistance from healthcare providers (home health, public health, etc.)? 11. What do you do when you need information or help? 12. Whatarethe positiveaspects ofthecaregiving experience? 13. What are the negative aspects of the caregiving experience? 14. What could the nurses of the rehabilitation program have done to help you more?
do us part.” A woman who cared for her father-in-law following a stroke said, “I take care of him because it’s my responsibility. I owe it to him. I was the only one who could quit my job and do it.” Another caregiver, an only daughter caring for her diabetic mother following a stroke, stated, “It means a lot to me to care for her rather than her going to a nursing home.” Finally, a 20-year-old caring for her grandmother who had had a stroke verbalized the reality of the situation. “She is my grandmother, and she didn’t have anybody to stay here with her,” the young woman said. Changes brought on by caregiving: How was the relationship affected by caregiving? Half of the respondents indicated that the closeness had positive and negative results. According to one caregiver, “You must be loving and caring in
the relationship, or you couldn’t do it without bitterness and resentment.” Othercaregiversspoke specifically about the personal effects of this new responsibility: “You must plan in detail; you can’t do things on the spur of the moment.” “I can’t be gone very long, and I must leave a number where I’ll be.” Words and phrases such as “real intense,” “exhausting,” and “hectic” added to the descriptionof the conceptof caregiving.Spontaneity and leisure activitieswere limited for these caregivers.“It takes him ten times as long to do anything,” said one caregiver. “It’s easier to eat at home than go out, to rent a video rather than go to a movie,” another remarked. The time required for caregiving ranged from 4 to 24 hours per day. More than half had anticipatedthe time needed by their familymembers. However,duringthe 2 months since discharge from the rehabilitation facility, all had been forced to adjust even further: “When it all happened, I didn’t realize what all was going to be involved, but I’ve accepted it.” The transition from rehabilitation program to home was difficult for some caregivers.Family members had visited their loved one during hospitalization and rehabilitation and then, seemingly all at once, found themselves completely responsible for this person. Just as with pregnancy and birth, educational preparation from books and classes is no match for the actual experience of providing care needed by a dependent human being. “At first I had to bathe and dress him, help him to the bathroom, and fix his plate,” one caregiver said. ‘‘I had gotten used to coming home and resting when he was at rehab.” Preparation for the caregiver role consisted mostly of rearranging furniture and family schedules. Several respondents stated, “I just took it one day at a time.” Most of the caregivers did not anticipate that the time required for providing care would decrease in the near future. Many of the patients had progressed to their maximum potential, and some weredeteriorating since coming home. Five of the caregivers had been employed outside the home prior to assuming this role. Two stopped working, and 1 decreased her employment to 2 days per week. Although several caregivers were able to alter their employment through leaves of absence or use of accumulatedvacation and sick time, nearly all the caregivers in this sample continued to perform other roles related to family, home, and church. Leisure activities such as gardening and traveling were curtailed almost completely after assuming the caregiver role. One woman said, “I do what I can during the day; what I can’t, I let go.” Experienceand assistance: Only one respondent had served as a full-time caregiver prior to this experience.Two others had performed the role as an employee in the past, and 1 had cared for an ill mother-in-law off and on for 2 years. The remaining 6 respondentshad never experiencedthis responsibilitybefore. Three of the caregivershad no physical oremotional assistance with this demanding role. Others had some assistance from family, friends, and employees such as maids or sittersfor brief periods of time. Five of the individuals receiving care were visited by home healthcare nurses at least monthly; however, the visits were Vol. 16, No. 4Behabilitation NursindJul-Aug 1991/197
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brief and primarily for screening and assuring the physical health of the care recipient. The caregivers were asked to describe what they would do if they needed information or assistance in providing care. Five of the respondents indicated that they would call a nurse-either the home healthcare nurse or the nurse from the physical rehabilitation facility where the patient had received therapy. Caring for the caregiver:The caregivers also were asked to describe how they cared for themselves since assuming this role. Many said they rest when the opportunity affords a quick nap. Many also said that they “let a lot of things go.” Several valued quiet time in the form of reading, walking, or gardening. One caregiver commented, “I don’t care for myself. I go out for about an hour occasionally, but I wouldn’t want anything to happen to him when I wasn’t here.” Positive and negative aspects: Finally, respondents were asked to relate the positive and negative aspectsof the relatively new role they had assumed. The time commitment and the inability to leave the situation for longer than a few hours were the most frequently stated negative aspects. Physical and emotional requirements were taxing to most respondents: “My husband is rebelling and I get tired of it.” “I get physically tired and a little depressed at times.”“Taking her back and forth from the bathroom is tiring. Sometimes she waits until the last minute. Most of the time she can make it, but then she may make a mess.” However, the respondents said that the realities of day-today life when caring for a dependent adult also had positive aspects. Many caregivers received a sense of fulfillment in knowing that they were putting forth their best effort in assisting their loved one: “He smiled yesterday.” Some said they had developed an appreciation for life in general.
Summary The 10 caregivers sampled in this research verbalized many of the feelings of satisfaction and frustrationdocumented in the literature. The caregivers were provided an opportunity to vent their emotions and describe their lives in this new role to an unbiased observer. Some responded to this opportunity with guarded statements, and only nonverbal actions gave clues to their lives as caregivers. Others viewed the chance to talk to someone who was interested in their experience as therapeutic in helping them cope with the rigors of caregiving. These caregivers said that the rehabilitation facility had prepared them to assume their new responsibilities as much as possible. Teaching, various forms of therapy, and the intensive communicationbetween facility staff and family had provided a bridge to home. This research described the experiences of only individualsproviding care to persons who were candidates for rehabilitation-those who could learn and progress, at least to a degree. Other chronically ill persons who cannot improve often must receive care from a friend or family member in the community as well. At least the caregivers in this study had a time of transition and preparation for the role. Our healthcare environment does not offer all caregivers this opportunity. Professional rehabilitation nurses must continue the tradi-
tion of providing individualized quality care to patients and loved ones. In preparation for discharge, 24-hour home visits allow the patient and caregiver to test what they have learned. Adjustments in the physical arrangement and activities of the home then can be made prior to actual discharge. Open communicationis vital to the patient-caregiverrelationship.Building the caregiver’s trust and faith in the support of the primary nurse helps the caregiver believe that someone who knows and cares for the patient is only a phone call away. Further research should explore nursing interventions that facilitate the emotional and physical adaptation of caregivers, particularly in the form of discharge preparation and home follow-up. The financial cost to these caregivers should be explored and possible reimbursement strategies for home care considered.The individualsinvolved in caregivingwill change as death or recovery occurs, but caregiving by friends and family will become increasingly common as our healthcare system continues to embrace rapid recovery and life-sustaining technology. Felecia Grier Wood is associate dean of the Capstone College ofNursing at The UniversityofAlabama in Tuscaloosa,
References Bloch, D.A. (1984). The family therapist as health care consultant. Family Systems Medicare, 2, 161-169. Field, P.A., & Morse, J.M. (1985). Nursing research: The application ofqualitative approaches. Rockville, MD: Aspen Publishers, Inc. Hawranik, P. (1985). Caring for aging parents: Divided allegiances. Journal of Gerontological Nursing, 11(10), 19-22. Hinds, C. (1985). The needs of families who care for patients with cancer at home: Are we meeting them? Journal of Advanced Nursing, 10,575-58 1. Oliver, J. (1985, January 16). Eight days a week. Nursing Times, p. 23. Phillips, L.R., & Rempusheski, V.E. (1986). Caring for the frail elderly at home: Toward a theoretical explanation of the dynamics of poor quality family caregiving. Advances in Nursing Science, 8, 62-84. Robinson, B., & Thumher, M. (1979). Taking care of aged parents: A family cycle transition. The Gerontologist, 19,586-593. Robinson, K. (1986). Older women and care giving. Nursing Success Today, 3(10), 28-33. Rosenbaum, J.N. (1986). Comparison of two theorists on care: Orem and Leininger. Journal of Advanced Nursing, 11,409-419. Taylor, J.J., & Bogdan, R. (1984). Infroduction to quaIitarive research methods: The search for meanings. New York: John Wiley & Sons, Inc. US.DepartmentofCommerceBureauoftheCensus.(1986).Sratistical abstract of the US.Washington, DC: U.S. Government Printing Office.
Acknowledgments The author gratefully acknowledges the contributionsof Pat Haase, BSN RN, for her assistance in data collection. This research was funded by The University of Alabama Research Grants Committee (Project Number 1447).
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