This article was downloaded by: [University of Sussex Library] On: 10 February 2015, At: 21:40 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
Journal of Community Health Nursing Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/hchn20
Self-Perceived Needs of Primary Caregivers of Home-Hospice Clients Susan D. Decker & Eva Young Published online: 07 Jun 2010.
To cite this article: Susan D. Decker & Eva Young (1991) Self-Perceived Needs of Primary Caregivers of Home-Hospice Clients, Journal of Community Health Nursing, 8:3, 147-154, DOI: 10.1207/ s15327655jchn0803_4 To link to this article: http://dx.doi.org/10.1207/s15327655jchn0803_4
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions
JOURNAL OF COMMUNI'N HEALTH NURSING, 1991,8(3), 147-1 54 Copyright @ 1991, Lawrence Erlbaum Associates, Inc.
Self-perceived Needs of Primary Caregivers of Home-Hospice Clients
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Susan D. Decker, RN, PhD, and Eva Young, RN, BSN University of Portland
The purpose of this study was to assess the self-perceived needs of primary caregivers of terminally ill home-hospice clients. A home interview was conducted using an instrument based on the Neuman Systems Model. Data were analyzed in relation to intrapersonal stressors (within the individual), interpersonal stressors (between the individual and others), and extrapersonal stressors (between the individual and the environment). Five community nursing diagnoses (Porter, 1987) were identified: (a) Population at risk for health problems, (b) population at risk for role constriction/role fatigue, (c) population at risk for insufficient support, (d) population at potential risk for lack of information, and (e) population at potential risk for lack of service coordination. Early attention to limiting the impact of stressors on the caregiver can improve the caregiver's ability to care for the hospice client.
Care of the terminally ill in America is being modified as a result of changes in the social and financial climate (Dobratz, 1990). There has been a "major philosophical and conceptual shift away from the view of death as the grim reaper to one of death as a natural biologic event" (Cassileth & Donovan, 1983, p. 60). The development of equipment and techniques to prolong life has created a host of difficult moral, legal, social, and financial issues, not the least of which is the right to die a "natural" death (Cassileth & Donovan, 1983). Faced with changes in Medicare reimbursement patterns, hospitals are trying to shorten the length of stay for Medicare recipients. Patients with long-term illnesses, often those who are terminal or dying, have been forced to find alternate sources of health care. Hospice care at home has become one of these sources (Dobratz, 1990). Family members or friends provide the bulk of care received by home-care hospice clients. This study focuses on assessing the needs of caregivers providing home care to terminally ill clients of Mid-Willarnette Valley Hospice (MWVH). REVIEW OF LITERATURE
The modern hospice movement began in 1967 with the founding of St. Christopher's Hospice in England by Dr. Cicely Saunders (Rhymes, 1990; Seale, 1989). Requests for reprints should be sent to Susan D. Decker, RN, PhD, School of Nursing, University of Portland, 5000 North Willamette Boulevard, Portland, OR 97203.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
148
Decker and Young
Growth of the hospice movement in America has been rapid since its founding in 1974 (Rhymes, 1990). The addition of a hospice benefit to Medicare, Part A, in 1983 (Cassileth & Donovan, 1983) contributed to an increase from 516 hospices in 1983 to more than 1,700 in 1989, including 600 Medicare-certified hospices (Rhymes, 1990). Hospice care in America is provided in several different forms: home-care services, hospice teams in hospitals, palliative care units in hospitals, hospices with hospital affiliations, and freestanding hospices (Wald, Foster, & Wald, 1980). The philosophy of hospice care emphasizes palliative, rather than curative, treatment and enhancing the quality of life (Seale, 1989). Hospice views the dying person and the family as a single unit of care (Gordon & Rooney, 1984; Seale 1989). Control of pain and other symptoms, as well as emotional support, is of central concern (Perrollaz & Mollica, 1981). Assisting the family to deal with the losses caused by a terminal illness and bereavement support after the patient's death are an important part of any hospice program (Benoliel, 1985; Kane, Klein, Bernstein, & Rothenberg, 1986; Worden, 1985). Agencies providing home-care services, like MWVH, rely on clients having a relative or other person to provide the bulk of their care needs. Primary caregivers tend to be women, spouses of the patient, and over the age of 60 themselves. "The health state, developmental tasks and the limitations of primary caregivers is often an important factor in patient care" (Petrosino, 1985, p. 15). The significance of this factor tends to increase with the age of the caregiver; thus, home-hospice care is frequently a case of the frail caring for the frail (Petrosino, 1985). Many studies have been done to identify the needs of primary caregivers and the stresses created by assumption of this role (Googe & Varricchio, 1981; Grobe, 11strup, & Ahmann, 1981; Hinds, 1985; Matson, 1988; Skorupka & Bohnet, 1982). The constant attendance required by severely debilitated patients leads to the caregiver becoming almost as housebound as the patient (Goldstein, Regnery, & Wellin, 1981; Theis & Deitrick, 1987). Role changes and changes in communication patterns are common after a family member takes on the duties of caregiver (Matson, 1988). Role conflict occurs when the caregiver has numerous other obligations (i.e., occupation, mother, wife) and the demands of the different roles cannot be readily reconciled. Role constriction is a function of reduction in the range of roles fulfilled by the caregiver due to the centering of activities around the patient. Confinement within the house and subordination of all other roles to the demands of caregiving leads to role fatigue, probably the most frequently mentioned problem (Goldstein et al., 1981). Other needs commonly identified by caregivers are the need for information about caring for the patient (Googe & Varricchio, 1981) and the need for respite care (Nugent, 1988). When caregiver needs go unmet, stress is created which, if great enough or sufficiently prolonged, could impair or even destroy the family's role as a buffer for its members (Kaplan, 1982). Although families utilizing hospice services to care for a terminally ill member express greater satisfaction with their involvement in the patient's care than do those receiving care in traditional settings (Seale, 1989), they also report higher levels of stress and social disruption (Googe &
Self-perceived Needs of Caregivers
149
Varricchio, 1981; Greer & Mor, 1986). Early and ongoing assessment of family needs and stressors is necessary to facilitate a safe passage through this crisis period (Hinds, 1985; Wright & Dyck, 1984).
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
NEED ANALYSIS "Needs assessment is the process by which one identifies needs and decides which of them should receive the most attention" (Kosecoff & Fink, 1981, p. 986). Need analysis can assist with program planning and the allocation of resources. Decisions involving the availability and adequacy of services to meet community needs, as well as possible actions to correct inadequacies, can be facilitated by need analysis (McKillip, 1987). The first step in need analysis is to identify the user and uses of the analysis (McKillip, 1987). MWVH is a small, nonprofit agency providing services to terminally ill persons in the Salem, OR area. Respite volunteers, bereavement and spiritual support, social services, and some limited nursing services are provided directly by the hospice. The majority of skilled nursing needs have been met by local home health agencies. MWVH is in the process of converting to a Medicare-certified program. This is likely to increase the number of clients utilizing hospice services. An assessment of the self-perceived needs of primary caregivers of home-hospice clients will provide information about how well present services are meeting caregivers' needs and about areas where services are not adequate. The information gathered in the need analysis will be utilized by hospice staff for program planning.
COMMUNITY OF FOCUS The community of interest was primary caregivers of terminally ill persons within the service area of MWVH. The sample of convenience consisted of 21 persons identified as primary caregivers of patients actively receiving home-hospice services. This included the total number of caregivers involved with the hospice program as of June 28, 1990. Two subjects were dropped due to the patient expiring before the interview could take place; the final subject group numbered 19. Ten of this group also had a home health agency involved in the patient's care. Table 1 outlines the descriptive characteristics of this group. Initial contact with subjects was by telephone to request their participation in the study. All subjects agreed to participate. Informed consent was obtained at the time of the home interview. Confidentiality and anonymity were assured by the use of a code number on the data-gathering instrument. Subjects were assured that nonparticipation in the study would in no way influence the services they were receiving.
150
Decker and Young TABLE 1 Descriptive Characteristicsof Primary Caregiversa
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Characteristic Sex Male Female Relationship to Patient Spouse Child Parent Other relative Friend Educational Background < High school High school 1 to 3 years of college 4 years of college Employed Outside the Home No Part time Full time Age Number of Children Number of Years in This Geographic Area
Number of Caregivers
Brcentage
3 16
16 84
11
58
4
21
1 2 1
5 11 5
5
26 22 47 5
4
9 1 16 2 1
Range
M
84 11 5 25 to 81 years 0 to 12
58.7 years
< 1 month to 50 years
20.5 years
3
an = 19.
INSTRUMENT
A needs-assessment interview schedule was constructed after extensive review of the literature regarding the needs of caregivers. Neuman's model (1989) provided the framework for instrument development. The instrument was designed to elicit information about intra-, inter-, and extrapersonal stressors in regard to physiological, psychological, sociocultural, developmental, and spiritual aspects of the caregiver's life situation. Both qualitative and quantitative items were included in the instrument. Qualitative answers were recorded verbatim and analyzed in relation to intra-, inter-, and extrapersonal stressors. RESULTS lntrapersonal Stressors 1. Caregiver's health: Although caregivers perceived their overall health status as fairly good, only 16% had no concerns about their health at all. A significant number (37%) complained of back problems limiting their ability to physically care for the patient. A large number of caregivers also reported insufficient rest. Thirtyseven percent of the caregivers reported that they were up at night with the patient; it was even more frequently mentioned that they slept lightly in anticipation of a patient need.
Self-perceived Needs of Caregivers
151
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
2. Role constriction/role fatigue: Eighty-four percent of the caregivers did not work outside the home. Fifty-eight percent reported they were never able to leave the patient alone and were able to get out of the house less than three times per week. Forty-two percent of the caregivers in this study were the only other person living in the house with the patient. 3. Coping with patient situation: Concerns in this area centered around being able to provide the level of care needed by the patient, watching the patient's condition deteriorate, and uncertainty as to "how long this will go on." Twenty-one percent reported being overwhelmed by the demands of the situations on a daily basis. Interpersonal Stressors 1. Lack of support: A need for respite care was frequently mentioned. Thirtyseven percent of the caregivers stated they received frequent or daily assistance from other family members, while an equal number (37%) stated they seldom or never received such assistance. Even fewer received assistance from neighbors or friends. Sixty-three percent stated they never, and 21% stated they seldom received assistance from neighbors and friends. 2. Lack of information: Seventy-four percent of the caregivers felt that they had always received adequate instructions about the patient's care needs. Fifty-eight percent of the caregivers perceived that physicians were the most helpful in answering questions, while 32% perceived nurses to be most helpful. Several caregivers expressed a specific need for more information regarding what to do at the time of death. 3. Lack of coordination of services: "There are so many people in and out, it makes me nervous." Fifty-three percent of the caregivers had home health as well as hospice involved in the care of the patient. Caregivers stated they were not sure who to call when and were generally uncomfortable with the large number of people involved.
Extrapersonal Stressors 1. Finances:
"Other members of the family thhk I'm spending too much on her care. Medications aren't covered by Medicare, they're so expensive." Though not of great concern for most caregivers presently (58% never concerned), many felt financial pressures would mount over time. 2. Legal concerns: Several caregivers were concerned with legal issues. One patient, for example, had four small children and her mother (primary caregiver) was concerned about getting legal custody. Other concerns were related to "Do Not Resuscitate" orders and "Directive to Physicians (Living Will)." NURSING DIAGNOSES
The identification of stressors (needs) leads to the formulation of community nursing diagnoses. The factor isolating theory of population group diagnosis was used to form nursing diagnoses for the community studied (Porter, 1987).
152
Decker and Young
A first and second stage nursing diagnosis was made: The first stage determines the group's state of health, while the second stage evaluates the degree of match between the group's health need and existing services (Porter, 1987). Based on the most prevalent concerns of the caregivers, five nursing diagnoses were identified.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Diagnosis I . Population at risk for health problems related to physical demands of caring for the patient and insufficient rest and sleep.
1. Need-service mismatch related to the lack of interventions directed specifically toward the caregivers' health status. 2. Short-term goal: Devise teaching sheets for use by nurses to instruct caregivers in use of proper body mechanics and ways to meet sleephest needs more effectively. 3. Long-term goal: Provide increased home care and respite services. Diagnosis 2. Population at risk for role constriction/role fatigue related to large number of caregivers living alone with the patient, few "breaks" from role as manifested by requests for increased respite relief, complaints of being housebound.
1. Need-service mismatch related to insufficient role relief. 2. Short-term goal: Provide increased number of MWVH volunteer respite care hours to caregivers expressing this need immediately subject to volunteer availability. 3. Long-term goal: Provide up to 5 days in-patient respite (i.e., nursing home care) for caregiver relief as part of Medicare hospice benefit. Diagnosis 3. Population at risk for insufficient support related to little assistance from friends and neighbors, variable levels of assistance from other family members, and feelings of being overwhelmed by demands of the situation.
1. Need-service mismatch related to inadequate level of support. 2. Short-term goal: Continue present level of program support utilizing hospice, home health, and community resources. 3. Long-term goal: Improve level of support available to caregivers through development of a hospice respite volunteer group and utilization of the Medicare hospice benefit for respite care. Diagnosis 4. Population at potential risk for lack of information related to requests for information, particularly concerning the death experience.
1. Need-service mismatch related to inadequate teaching programs to meet caregiver needs. 2. Short-term goal: Devise teaching sheets for use by MWVH nurses to instruct caregivers in signs of approaching death.
Self-perceived Needs of Caregivers
153
3. Long-term goal: Develop packet of teaching sheets covering frequently noted concerns of patient/family (i.e., medications, signs of approaching death, catheter maintenance) to be used by MWVH nurses to provide standardized, comprehensive instruction to patient/family.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Diagnosis 5. Population at potential risk for lack of service coordination related to care being provided by several different agencies as manifested by caregiver complaints of too many people being involved in care and not knowing who to call for what. 1. Need-service mismatch related to fragmented provision of hospice care. 2. Short-term goal: Assumption of care coordination among agencies by MWVH Patient Care Coordinator. 3. Long-term goal: Provision and coordination of all phases of care for hospice client/families with minimal home health involvement.
CONCLUSION The findings of this study indicate that assistance is required by MWVH caregivers to deal with perceived stressors in the following areas: 1. Intrapersonal: (a) caregiver's health and rest, (b) role constriction/role fatigue, and (c) coping with patient situation. 2. Interpersonal: (a) lack of support, (b) lack of information, and (c) lack of coordination of services. 3. Extrapersonal: (a) finances, and (b) legal concerns. The success of in-home hospice care depends on the ability of the caregiver to maintain his or her own health status and coping abilities. By using primary prevention approaches such as ongoing assessment, teaching, and provision of adequate respite, the nurse can assist the caregivers to withstand the stressors impinging upon them. REFERENCES Benoliel, J. (1985). Loss and terminal illness. Nursing Clinics of North America, 20(2), 439-447. Cassileth, B., & Donovan, J. (1983). Hospice: History and implications of the new legislation. Journal of Psychmocial Oncology, 1(1), 59-69. Dobratz, M. (1990). Hospice nursing. Cancer Nursing, 13(2), 116-1 22. Goldstein, V., Regnery, G., & Wellin, E. (1981). Caretaker role fatigue. Nursing Outlook, 29(1) 24-30.
Googe, M., & Varricchio, C. (1981). A pilot investigation of home health care needs of cancer patients and their families. Oncology Nursing Forum, 8(4), 24-28. Gordon, A., & Rooney, A. (1984). Hospice and the family: A systems approach to assessment. The American Journal of Hospice Care, 1(1), 3 1-33.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
154
Decker and Young
Greer, D., & Mor, V. (1986). An overview of national hospice study findings. Journal of Chronic Diseases, 339(1), 5-7. Grobe, M., Ilstrup, D., & Ahmann, D. (1981). Skills needed by family members to maintain the care of an advanced cancer patient. Cancer Nursing, 4(5), 37 1-375. Hinds, C. (1985). The needs of families who care for patients with cancer at home: Are we meeting them? Journal of Advanced Nursing, 10, 575-581. Kane, R., Klein, S., Bernstein, L., & Rothenberg, R. (1986). The role of hospice in reducing the impact of bereavement. Journal of ChronicDiseases, 3390, 735-742. Kaplan, D. (1982). Psychosocial aspects of cancer. New York: Raven Press. Kosecoff, J., & Fink, A. (1981). Needs assessment: Selecting goals for a clinical program. Drug Zntelligence and Clinical Pharmacy, 15, 986-989. Matson, C. (1988). Families with a terminally ill member. A grounded theory of family relationships. The American Journal of Hospice Care, 5(4), 38-4 1. McKillip, J. (1987). Need analysis. Tools for the human services and education. Newbury Park, CA: Sage. Neuman, B. (1989). The Neuman Systems Model. Norwalk, CT Appleton & Lange. Perrollaz, L., & Mollica, M. (1981). Public knowledge of hospice care. Nursing Outlook, 29(1), 46-48.
Petrosino, B. (1985). Characteristics of hospice patients, primary caregivers and nursing care problems. Foundation for future research. The Hospice Journal, 1(1), 3-19. Porter, E. (1987). Administrative diagnosis-Implications for the public's health. Public Health Nursing, 4(4), 247-256. Rhymes, J. (1990). Hospice care in America. JAMA, 264(3), 369-372. Seale, C. (1989). What happens in hospices: A review of research evidence. Social Science Medicine, 28(6), 551-559.
Skorupka, P., & Bohnet, N. (1982). Primary caregivers' perceptions of nursing behaviors that best meet their needs in a home care hospice setting. Cancer Nursing, 5(5), 371-374. Theis, S., & Deitrick E. (1987). Respite care: A community needs survey. Journal of Community Health Nursing, 4, 85-92. Wald, F., Foster, Z., & Wald, H. (1980). The hospice movement as a health care reform. Nursing Outlook, 28(3), 173-178. Worden, J. W. (1985). Bereavement. Seminars in Oncology, 12(4), 472-475. Wright, K., & Dyck, S. (1984). Expressed concerns of adult cancer patients' family members. Cancer Nursing, 7(6), 37 1-374.
Journal of Community Health Nursing Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/hchn20
Self-Perceived Needs of Primary Caregivers of Home-Hospice Clients Susan D. Decker & Eva Young Published online: 07 Jun 2010.
To cite this article: Susan D. Decker & Eva Young (1991) Self-Perceived Needs of Primary Caregivers of Home-Hospice Clients, Journal of Community Health Nursing, 8:3, 147-154, DOI: 10.1207/ s15327655jchn0803_4 To link to this article: http://dx.doi.org/10.1207/s15327655jchn0803_4
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions
JOURNAL OF COMMUNI'N HEALTH NURSING, 1991,8(3), 147-1 54 Copyright @ 1991, Lawrence Erlbaum Associates, Inc.
Self-perceived Needs of Primary Caregivers of Home-Hospice Clients
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Susan D. Decker, RN, PhD, and Eva Young, RN, BSN University of Portland
The purpose of this study was to assess the self-perceived needs of primary caregivers of terminally ill home-hospice clients. A home interview was conducted using an instrument based on the Neuman Systems Model. Data were analyzed in relation to intrapersonal stressors (within the individual), interpersonal stressors (between the individual and others), and extrapersonal stressors (between the individual and the environment). Five community nursing diagnoses (Porter, 1987) were identified: (a) Population at risk for health problems, (b) population at risk for role constriction/role fatigue, (c) population at risk for insufficient support, (d) population at potential risk for lack of information, and (e) population at potential risk for lack of service coordination. Early attention to limiting the impact of stressors on the caregiver can improve the caregiver's ability to care for the hospice client.
Care of the terminally ill in America is being modified as a result of changes in the social and financial climate (Dobratz, 1990). There has been a "major philosophical and conceptual shift away from the view of death as the grim reaper to one of death as a natural biologic event" (Cassileth & Donovan, 1983, p. 60). The development of equipment and techniques to prolong life has created a host of difficult moral, legal, social, and financial issues, not the least of which is the right to die a "natural" death (Cassileth & Donovan, 1983). Faced with changes in Medicare reimbursement patterns, hospitals are trying to shorten the length of stay for Medicare recipients. Patients with long-term illnesses, often those who are terminal or dying, have been forced to find alternate sources of health care. Hospice care at home has become one of these sources (Dobratz, 1990). Family members or friends provide the bulk of care received by home-care hospice clients. This study focuses on assessing the needs of caregivers providing home care to terminally ill clients of Mid-Willarnette Valley Hospice (MWVH). REVIEW OF LITERATURE
The modern hospice movement began in 1967 with the founding of St. Christopher's Hospice in England by Dr. Cicely Saunders (Rhymes, 1990; Seale, 1989). Requests for reprints should be sent to Susan D. Decker, RN, PhD, School of Nursing, University of Portland, 5000 North Willamette Boulevard, Portland, OR 97203.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
148
Decker and Young
Growth of the hospice movement in America has been rapid since its founding in 1974 (Rhymes, 1990). The addition of a hospice benefit to Medicare, Part A, in 1983 (Cassileth & Donovan, 1983) contributed to an increase from 516 hospices in 1983 to more than 1,700 in 1989, including 600 Medicare-certified hospices (Rhymes, 1990). Hospice care in America is provided in several different forms: home-care services, hospice teams in hospitals, palliative care units in hospitals, hospices with hospital affiliations, and freestanding hospices (Wald, Foster, & Wald, 1980). The philosophy of hospice care emphasizes palliative, rather than curative, treatment and enhancing the quality of life (Seale, 1989). Hospice views the dying person and the family as a single unit of care (Gordon & Rooney, 1984; Seale 1989). Control of pain and other symptoms, as well as emotional support, is of central concern (Perrollaz & Mollica, 1981). Assisting the family to deal with the losses caused by a terminal illness and bereavement support after the patient's death are an important part of any hospice program (Benoliel, 1985; Kane, Klein, Bernstein, & Rothenberg, 1986; Worden, 1985). Agencies providing home-care services, like MWVH, rely on clients having a relative or other person to provide the bulk of their care needs. Primary caregivers tend to be women, spouses of the patient, and over the age of 60 themselves. "The health state, developmental tasks and the limitations of primary caregivers is often an important factor in patient care" (Petrosino, 1985, p. 15). The significance of this factor tends to increase with the age of the caregiver; thus, home-hospice care is frequently a case of the frail caring for the frail (Petrosino, 1985). Many studies have been done to identify the needs of primary caregivers and the stresses created by assumption of this role (Googe & Varricchio, 1981; Grobe, 11strup, & Ahmann, 1981; Hinds, 1985; Matson, 1988; Skorupka & Bohnet, 1982). The constant attendance required by severely debilitated patients leads to the caregiver becoming almost as housebound as the patient (Goldstein, Regnery, & Wellin, 1981; Theis & Deitrick, 1987). Role changes and changes in communication patterns are common after a family member takes on the duties of caregiver (Matson, 1988). Role conflict occurs when the caregiver has numerous other obligations (i.e., occupation, mother, wife) and the demands of the different roles cannot be readily reconciled. Role constriction is a function of reduction in the range of roles fulfilled by the caregiver due to the centering of activities around the patient. Confinement within the house and subordination of all other roles to the demands of caregiving leads to role fatigue, probably the most frequently mentioned problem (Goldstein et al., 1981). Other needs commonly identified by caregivers are the need for information about caring for the patient (Googe & Varricchio, 1981) and the need for respite care (Nugent, 1988). When caregiver needs go unmet, stress is created which, if great enough or sufficiently prolonged, could impair or even destroy the family's role as a buffer for its members (Kaplan, 1982). Although families utilizing hospice services to care for a terminally ill member express greater satisfaction with their involvement in the patient's care than do those receiving care in traditional settings (Seale, 1989), they also report higher levels of stress and social disruption (Googe &
Self-perceived Needs of Caregivers
149
Varricchio, 1981; Greer & Mor, 1986). Early and ongoing assessment of family needs and stressors is necessary to facilitate a safe passage through this crisis period (Hinds, 1985; Wright & Dyck, 1984).
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
NEED ANALYSIS "Needs assessment is the process by which one identifies needs and decides which of them should receive the most attention" (Kosecoff & Fink, 1981, p. 986). Need analysis can assist with program planning and the allocation of resources. Decisions involving the availability and adequacy of services to meet community needs, as well as possible actions to correct inadequacies, can be facilitated by need analysis (McKillip, 1987). The first step in need analysis is to identify the user and uses of the analysis (McKillip, 1987). MWVH is a small, nonprofit agency providing services to terminally ill persons in the Salem, OR area. Respite volunteers, bereavement and spiritual support, social services, and some limited nursing services are provided directly by the hospice. The majority of skilled nursing needs have been met by local home health agencies. MWVH is in the process of converting to a Medicare-certified program. This is likely to increase the number of clients utilizing hospice services. An assessment of the self-perceived needs of primary caregivers of home-hospice clients will provide information about how well present services are meeting caregivers' needs and about areas where services are not adequate. The information gathered in the need analysis will be utilized by hospice staff for program planning.
COMMUNITY OF FOCUS The community of interest was primary caregivers of terminally ill persons within the service area of MWVH. The sample of convenience consisted of 21 persons identified as primary caregivers of patients actively receiving home-hospice services. This included the total number of caregivers involved with the hospice program as of June 28, 1990. Two subjects were dropped due to the patient expiring before the interview could take place; the final subject group numbered 19. Ten of this group also had a home health agency involved in the patient's care. Table 1 outlines the descriptive characteristics of this group. Initial contact with subjects was by telephone to request their participation in the study. All subjects agreed to participate. Informed consent was obtained at the time of the home interview. Confidentiality and anonymity were assured by the use of a code number on the data-gathering instrument. Subjects were assured that nonparticipation in the study would in no way influence the services they were receiving.
150
Decker and Young TABLE 1 Descriptive Characteristicsof Primary Caregiversa
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Characteristic Sex Male Female Relationship to Patient Spouse Child Parent Other relative Friend Educational Background < High school High school 1 to 3 years of college 4 years of college Employed Outside the Home No Part time Full time Age Number of Children Number of Years in This Geographic Area
Number of Caregivers
Brcentage
3 16
16 84
11
58
4
21
1 2 1
5 11 5
5
26 22 47 5
4
9 1 16 2 1
Range
M
84 11 5 25 to 81 years 0 to 12
58.7 years
< 1 month to 50 years
20.5 years
3
an = 19.
INSTRUMENT
A needs-assessment interview schedule was constructed after extensive review of the literature regarding the needs of caregivers. Neuman's model (1989) provided the framework for instrument development. The instrument was designed to elicit information about intra-, inter-, and extrapersonal stressors in regard to physiological, psychological, sociocultural, developmental, and spiritual aspects of the caregiver's life situation. Both qualitative and quantitative items were included in the instrument. Qualitative answers were recorded verbatim and analyzed in relation to intra-, inter-, and extrapersonal stressors. RESULTS lntrapersonal Stressors 1. Caregiver's health: Although caregivers perceived their overall health status as fairly good, only 16% had no concerns about their health at all. A significant number (37%) complained of back problems limiting their ability to physically care for the patient. A large number of caregivers also reported insufficient rest. Thirtyseven percent of the caregivers reported that they were up at night with the patient; it was even more frequently mentioned that they slept lightly in anticipation of a patient need.
Self-perceived Needs of Caregivers
151
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
2. Role constriction/role fatigue: Eighty-four percent of the caregivers did not work outside the home. Fifty-eight percent reported they were never able to leave the patient alone and were able to get out of the house less than three times per week. Forty-two percent of the caregivers in this study were the only other person living in the house with the patient. 3. Coping with patient situation: Concerns in this area centered around being able to provide the level of care needed by the patient, watching the patient's condition deteriorate, and uncertainty as to "how long this will go on." Twenty-one percent reported being overwhelmed by the demands of the situations on a daily basis. Interpersonal Stressors 1. Lack of support: A need for respite care was frequently mentioned. Thirtyseven percent of the caregivers stated they received frequent or daily assistance from other family members, while an equal number (37%) stated they seldom or never received such assistance. Even fewer received assistance from neighbors or friends. Sixty-three percent stated they never, and 21% stated they seldom received assistance from neighbors and friends. 2. Lack of information: Seventy-four percent of the caregivers felt that they had always received adequate instructions about the patient's care needs. Fifty-eight percent of the caregivers perceived that physicians were the most helpful in answering questions, while 32% perceived nurses to be most helpful. Several caregivers expressed a specific need for more information regarding what to do at the time of death. 3. Lack of coordination of services: "There are so many people in and out, it makes me nervous." Fifty-three percent of the caregivers had home health as well as hospice involved in the care of the patient. Caregivers stated they were not sure who to call when and were generally uncomfortable with the large number of people involved.
Extrapersonal Stressors 1. Finances:
"Other members of the family thhk I'm spending too much on her care. Medications aren't covered by Medicare, they're so expensive." Though not of great concern for most caregivers presently (58% never concerned), many felt financial pressures would mount over time. 2. Legal concerns: Several caregivers were concerned with legal issues. One patient, for example, had four small children and her mother (primary caregiver) was concerned about getting legal custody. Other concerns were related to "Do Not Resuscitate" orders and "Directive to Physicians (Living Will)." NURSING DIAGNOSES
The identification of stressors (needs) leads to the formulation of community nursing diagnoses. The factor isolating theory of population group diagnosis was used to form nursing diagnoses for the community studied (Porter, 1987).
152
Decker and Young
A first and second stage nursing diagnosis was made: The first stage determines the group's state of health, while the second stage evaluates the degree of match between the group's health need and existing services (Porter, 1987). Based on the most prevalent concerns of the caregivers, five nursing diagnoses were identified.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Diagnosis I . Population at risk for health problems related to physical demands of caring for the patient and insufficient rest and sleep.
1. Need-service mismatch related to the lack of interventions directed specifically toward the caregivers' health status. 2. Short-term goal: Devise teaching sheets for use by nurses to instruct caregivers in use of proper body mechanics and ways to meet sleephest needs more effectively. 3. Long-term goal: Provide increased home care and respite services. Diagnosis 2. Population at risk for role constriction/role fatigue related to large number of caregivers living alone with the patient, few "breaks" from role as manifested by requests for increased respite relief, complaints of being housebound.
1. Need-service mismatch related to insufficient role relief. 2. Short-term goal: Provide increased number of MWVH volunteer respite care hours to caregivers expressing this need immediately subject to volunteer availability. 3. Long-term goal: Provide up to 5 days in-patient respite (i.e., nursing home care) for caregiver relief as part of Medicare hospice benefit. Diagnosis 3. Population at risk for insufficient support related to little assistance from friends and neighbors, variable levels of assistance from other family members, and feelings of being overwhelmed by demands of the situation.
1. Need-service mismatch related to inadequate level of support. 2. Short-term goal: Continue present level of program support utilizing hospice, home health, and community resources. 3. Long-term goal: Improve level of support available to caregivers through development of a hospice respite volunteer group and utilization of the Medicare hospice benefit for respite care. Diagnosis 4. Population at potential risk for lack of information related to requests for information, particularly concerning the death experience.
1. Need-service mismatch related to inadequate teaching programs to meet caregiver needs. 2. Short-term goal: Devise teaching sheets for use by MWVH nurses to instruct caregivers in signs of approaching death.
Self-perceived Needs of Caregivers
153
3. Long-term goal: Develop packet of teaching sheets covering frequently noted concerns of patient/family (i.e., medications, signs of approaching death, catheter maintenance) to be used by MWVH nurses to provide standardized, comprehensive instruction to patient/family.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
Diagnosis 5. Population at potential risk for lack of service coordination related to care being provided by several different agencies as manifested by caregiver complaints of too many people being involved in care and not knowing who to call for what. 1. Need-service mismatch related to fragmented provision of hospice care. 2. Short-term goal: Assumption of care coordination among agencies by MWVH Patient Care Coordinator. 3. Long-term goal: Provision and coordination of all phases of care for hospice client/families with minimal home health involvement.
CONCLUSION The findings of this study indicate that assistance is required by MWVH caregivers to deal with perceived stressors in the following areas: 1. Intrapersonal: (a) caregiver's health and rest, (b) role constriction/role fatigue, and (c) coping with patient situation. 2. Interpersonal: (a) lack of support, (b) lack of information, and (c) lack of coordination of services. 3. Extrapersonal: (a) finances, and (b) legal concerns. The success of in-home hospice care depends on the ability of the caregiver to maintain his or her own health status and coping abilities. By using primary prevention approaches such as ongoing assessment, teaching, and provision of adequate respite, the nurse can assist the caregivers to withstand the stressors impinging upon them. REFERENCES Benoliel, J. (1985). Loss and terminal illness. Nursing Clinics of North America, 20(2), 439-447. Cassileth, B., & Donovan, J. (1983). Hospice: History and implications of the new legislation. Journal of Psychmocial Oncology, 1(1), 59-69. Dobratz, M. (1990). Hospice nursing. Cancer Nursing, 13(2), 116-1 22. Goldstein, V., Regnery, G., & Wellin, E. (1981). Caretaker role fatigue. Nursing Outlook, 29(1) 24-30.
Googe, M., & Varricchio, C. (1981). A pilot investigation of home health care needs of cancer patients and their families. Oncology Nursing Forum, 8(4), 24-28. Gordon, A., & Rooney, A. (1984). Hospice and the family: A systems approach to assessment. The American Journal of Hospice Care, 1(1), 3 1-33.
Downloaded by [University of Sussex Library] at 21:40 10 February 2015
154
Decker and Young
Greer, D., & Mor, V. (1986). An overview of national hospice study findings. Journal of Chronic Diseases, 339(1), 5-7. Grobe, M., Ilstrup, D., & Ahmann, D. (1981). Skills needed by family members to maintain the care of an advanced cancer patient. Cancer Nursing, 4(5), 37 1-375. Hinds, C. (1985). The needs of families who care for patients with cancer at home: Are we meeting them? Journal of Advanced Nursing, 10, 575-581. Kane, R., Klein, S., Bernstein, L., & Rothenberg, R. (1986). The role of hospice in reducing the impact of bereavement. Journal of ChronicDiseases, 3390, 735-742. Kaplan, D. (1982). Psychosocial aspects of cancer. New York: Raven Press. Kosecoff, J., & Fink, A. (1981). Needs assessment: Selecting goals for a clinical program. Drug Zntelligence and Clinical Pharmacy, 15, 986-989. Matson, C. (1988). Families with a terminally ill member. A grounded theory of family relationships. The American Journal of Hospice Care, 5(4), 38-4 1. McKillip, J. (1987). Need analysis. Tools for the human services and education. Newbury Park, CA: Sage. Neuman, B. (1989). The Neuman Systems Model. Norwalk, CT Appleton & Lange. Perrollaz, L., & Mollica, M. (1981). Public knowledge of hospice care. Nursing Outlook, 29(1), 46-48.
Petrosino, B. (1985). Characteristics of hospice patients, primary caregivers and nursing care problems. Foundation for future research. The Hospice Journal, 1(1), 3-19. Porter, E. (1987). Administrative diagnosis-Implications for the public's health. Public Health Nursing, 4(4), 247-256. Rhymes, J. (1990). Hospice care in America. JAMA, 264(3), 369-372. Seale, C. (1989). What happens in hospices: A review of research evidence. Social Science Medicine, 28(6), 551-559.
Skorupka, P., & Bohnet, N. (1982). Primary caregivers' perceptions of nursing behaviors that best meet their needs in a home care hospice setting. Cancer Nursing, 5(5), 371-374. Theis, S., & Deitrick E. (1987). Respite care: A community needs survey. Journal of Community Health Nursing, 4, 85-92. Wald, F., Foster, Z., & Wald, H. (1980). The hospice movement as a health care reform. Nursing Outlook, 28(3), 173-178. Worden, J. W. (1985). Bereavement. Seminars in Oncology, 12(4), 472-475. Wright, K., & Dyck, S. (1984). Expressed concerns of adult cancer patients' family members. Cancer Nursing, 7(6), 37 1-374.
