Perceptions of the most helpful nursing behaviors in a home-care hospice setting: Caregivers and nurses Patricia Y. Ryan, RN, MSN, OCN
Abstract The purpose of this study was to determine those nursing behaviorsperceived as mosthelpful and least helpful by primary caregivers and by hospice nurses in a home-care hospice setting. A Q-sort of 60 nursing behaviors rankedfrom most to least helpful was completed by 20 caregivers, during the bereavement period and by five hospice nurses, who were currently employed by the hospice. These nursing behaviors were categorized as: • Nursing behaviors related to the patient’s physical needs; • Nursing behaviors related to the patient’s psychosocial needs; and • Nursing behaviors related to the psychosocial needs of the caregivers.
Introduction Caring is a concept central to nursing. Although nurses provide much Patricia Y Ryan, RN, MSN, OCN, is affiliated with the Jessamine County Hospice, Inc., Nicholasville, Kentucky. and isafaculty member at the University of Kentucky College ofNursing.
direct care to patients, they are increasingly directing their efforts toward involving patients in their own care. The goal of treatment in terminal illness is more than the control of symptoms, it is that the patient and family enjoy the highest quality
Although nurses provide much direct care to patients, they are increasingly directing their efforts toward involvingpatients in their own care. of life possible, although the quantity of that life may be limited. Terminal careinvolves a holistic andindividualizedapproach tothe patient, the family and the situation. According to the National Hospice Organization, approximately 250,000 patients were servedby hospices in the United States in 1989. This re-orientation to selfcare entails eliciting directly from the
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patient and family what their needs are and how these needs can best be met. Allowing the patient control in his/her care is important in all aspects ofnursing, but especially in hospice nursing, which deals solely with terminally ill patients. Maintaining control in decisions about care is very important because so many other aspects oftheir illness are beyond control. This study was a replication of the study conducted by McGinnis.’ Additions to the study were the identification of hospice nurses’ responses and primary caregivers’ perceptions of the amount of care required by the patient and the amount of pain experienced by the patient. Statement ofpurpose The purpose of this study was to determine those nursing behaviors perceived as most and least helpful by primary caregivers of home-care hospice patients, and by hospice nurses. Study questions Are the nursing behaviors chosen as helpful related to the primary caregivers’ perceptions of the amount of care required by the patient?
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• Are the nursing behaviors chosen as helpful related to the primary caregivers’ perception of the amount of pain experienced by the patient? • Are the nursing behaviors chosen as helpful related to the nature of the relationship of the primary caregiver to the patient? • Does the length of time since the death of the hospice patient influence the choice of most or least helpful nursing behaviors? Assumptions The following assumptions about caring in nursing were utilized for this study: • Caring is central to nursing.2 • Care enhances patients’ quality of life. • Hospice nursing involves caring. Conceptualframework Watson’s theory of care was used as a framework for this study. She emphasizes the individuality of each person and refers to the person as a holistic being comprised of physical, intellectual, emotional and spiritual aspects.3 Hertheory proposes that the practice of caring is central to nursing and that the goal of nursing is to help persons gain a higher degree of harmony between mind, body, and soul. Patients need to be involved in their care and the nurse assists them either in attaining or maintaining health or in dying a peaceful death. Watson’s framework applies easily to hospice nursing. The caring she conceptualizes pertains to the caregivers as well as to the patients. Hospice nurses need to know how nursing behaviors are perceived if they are to promote caring and quality of life for terminally-ill patients and their caregivers.
Literature review Quality of life Quality oflife is an elusive concept, but it has been a consistent focus in the issue of death with dignity.’ Three authors have addressed factors that determine the perception of quality of life. Young and Longman4 conducted a
Thepurpose of this study was to determine those nursing behaviors perceived as most and least helpful by primary caregivers of home-care hospice patients, and by hospice nurses. study that investigated variables associated with quality of life as perceived by 23 persons diagnosed with melanoma. They found that symptom distress was inversely associated with quality of life; social dependency was inversely related to quality of life; and behavior-morale was positively associated with quality of life. Martocchio5 discussed a variety of approaches in examining quality of life issues; dying with dignity, good death, healthy dying, and comfort care. She concluded that nurses may assist patients in achieving desired ways of dying by identifying patients’ personal wants and needs. McCartney and Larson6 discussed the issue of quality of life in persons with a gynecologic cancer diagnosis. They emphasize that an assessment of the benefits of treatment must include quality of life as well as quantity of survival. They discuss hospice and the importance of providing patients and families accurate information in order to allow them personal choice.
American Journal of Hospice & Palliative Care
Caring Several studies have been conducted concerning care and how care is perceived by the nurse, the patient, and the family (Brown7 Larson8 Riemen9). These studies identified nursing behaviors that convey caring. Comparisons and contrasts in perceptions were made with emphasis, again, on the importance of involving patients in their care. Research identifying nursing behaviors that are desired by patients and their families has major relevance to this study. Four studies which used a Q-sort method of obtaining this information were reviewed. Two of the studies were conducted with hospitalized patients and two more recent studies were conducted with patients in a home-care hospice setting. Irwin and Meiert°conducted an exploratory study to operationalize the concept of support for families of fatally-ill hospitalized persons. Using Qsort methodology, 60 items identified as behavior conveying support were ranked from most to least desirable by 20 health care professionals and 20 relatives of oncology patients. Nursing behaviors that conveyed honesty, the ability to answer questions and give clear explanations, the ability to provide information, the provision of comfort and genuine interest, were viewed as most supportive. Freihofer and Felton” conducted a study to determine nursing behaviors which offered the greatest support, comfort and ease of suffering. An 88item Q-sort method was used with a convenience sample of 25 loved ones of terminally-ill, hospitalized cancer patients. The nursing behaviors were classified in a three-tier category progressing from the physical needs of the patient, to the emotional needs of the patient, to the emotional needs of the bereaved. The nursing behaviors identified as most desirable pertained
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to the patient. The least desirable nursing behaviors pertained to theemotional needs of the bereaved. This study supported both the most highly rated and lowest rated behaviorsofIrwin and Meier’s research. Skoruphaand Bohnet’2 conducted a study to determine which nursing behaviors were perceived as most helpful to 20 primary caregivers in a homecare hospice setting using Q-sort methodology. Seventy-five nursing behaviors, falling into one of three categories, were ranked from most helpful to least helpful. They concluded that caregivers found nursing behavior directed toward the patient’s physical care and emotional needsto be most helpful. Skorupha and Bohnet suggested that hospice nurses assess each caregiver’s priorities for care in order to allow the patient and family as much control as possible. McGinnis conducted an exploratory study modified from Skorupha and Bohnet’s study, to determine what supportive nursing behaviors were needed by primary caregivers in a home-care hospice setting to maintain quality of life. She utilized the same Q-sort methodology, reduced to 60 nursing behaviors, which fell into the same three categories as the Skorupha and Bohnet study. Twenty primary caregivers ranked these behaviors from most helpful to least helpful. Her results correlated with those of Irwin and Meier, Freihofer and Felton, and Skorupha and Bohnet. However, she concluded that primary caregivers found nursing behaviors relating to the patient’s psychosocial needs as significantly more helpful than behaviors related to the patient’s physical needs or the caregiver’s psychosocial needs. She suggested that including the patient and family in informed decision-making assists in maintaining control. She recommended being honest, informing families of changes
in thepatient’s condition, being directly supportive and communicative, and teaching the family the signs and symptoms of approaching death.
caregivers found nursing behavior directed toward the patient’s physical care and emotional needs to be most helpful. This review of literature attempted to define caring as a nursing construct, to present earlier studies of nursing behaviors that were perceived as helpful to families of home-care hospice patients, and to conceptualize quality of life. The benefit of hospice care to families needs to be further investigated, with essential information elicited directly from patients and their caregivers. Conceptual definitions
Primary caregiver
the person primarily responsible for the home-care hospice patient. This individual may not necessarily be a family member. —
Hospice nurse —a person functioning under the title of RN, registered and legally licensed and employed by the home-care hospice for at least one year. Nursing behaviors the 60 items listed in the Q-sort instrument of this study. —
Methodology Setting and subjects This study was conducted in a metropolitancity in the private residences of each of the 20 participating caregivers and in a private room in the hospice office for each of the five participating hospice nurses. The hospice is a private, non-profit home-care hos-
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pice agency. The program is licensed by the state and certified by Medicare and Medicaid. The program has been operating since 1978 and has a daily census of approximately 90 terminallyill patients. A list of all deceased hospice patients served within the prior two to six months was compiled, by their identification numbers, from the hospice medical records. Using the table of random numbers,’3 the subjects were selected and checked for eligibility. Upon meeting all of the criteria, these primary caregivers were contacted by telephone and invited to participate in the study. Using the same table of random numbers, five hospice nurses were selected from a list of employee numbers and invited to participate in the study. Participation was voluntary. Of the 20 participating primary caregivers, the majority (75 percent) were female spouses. The primary caregivers ranged in age from 35 to 74 with a mean age of 54.6 years, SD of 64.3. Ninety percent of these hospice patients died at home. The majority of patients required moderate (40 percent) to a great deal (60 percent) of care and experienced moderate (35 percent) to a great deal (45 percent) of pain, as perceived by the primary caregivers. Data gathering devices A Q-sort methodology was used. In a Q-sort, the subject is presented with a set of cards on which words, phrases, statements, or other messages are written. The subject is then asked to sort the cards according to a particular dimension such as approval/disapproval, most like me/least like me, or highest priority/lowest priority. The number to be sorted into each group is predetermined.14 The Q-sort used in this study, borrowed with permission from McGinnis, consisted of 60 nursing behaviors that were divided equally into a three-tier classification system:
American Journal of Hospice & Palliative Care September/October 1992
• Behaviors related to the patient’s physical needs; • Behaviors related to the patient’s psychosocial needs; • Behaviors related to the psychosocial needs of the caregiver. These three categories were used in the analysis and interpretation of the findings. The subjects were requested to arrange the randomly shuffled 60 nursing behaviors, typed on 3 x 5 inch cards, into seven groups from most helpful to least helpful, with a predetermined number of cards in each group. Then each nursing behavior was given a score ranging from 1 least helpful; to 7 most helpful; according to the sorting by the subject. The mean and standard deviation for each behavioral —
—
statement were calculated. Content validity for the modified instrument was examined through review of the items by hospice nurse members of the state hospice council.’ All membersagreed that the items were valid interventions for hospice nurses. “The split-half technique was used to evaluate the internal consistency of the revised instrument. The SpearmanBowman prophecy formula identified reliability coefficients of .97 for Category A, .92 for Category B, and .95 for Category C. The reliability coefficient for the entire instrument was .98. The internal consistencyof therevised instrument is therefore strongly supported.” A pilot study was conducted to pretest the study procedures. Findings were that the directions for the Q-sort were clear, the 60 items were easily
Table 1. PRIMARY CAREGIVERS’ perceptions of the 10 MOST helpful nursing behaviors in a home care hospice setting.
Category
Nursing behavior
Mean
SD
Patient’s psychosocial needs
Listen to the patient/Listen to what the patient wants
5.65
.93
Patient’s physical needs
Provide the patient with the necessary emergency measures if the need arises
5.45
1.91
Caregiver’s psychosocial needs
Assure me that the nursing services will be available 24 hours a day, 7 days a week
5.35
1.60
Patient’s psychosocial needs
Answer the patient’s questions honestly
5.00
.92
Patient’s psychosocial needs
Talk to the patient to reduce his/her fears
4.95
1.05
Caregiver’s psychosocial needs
Provide me with information necessary if a home death occurs (e.g. who to notify and when to arrange removal of the body)
4.90
1.17
Caregiver’s psychosocial needs
Answer my questions honestly, openly and willingly
4.90
1.21
Stay with the patient during difficult times
4.85
1.31
Assure the patient that nursing services are available 24 hours a day, 7 days a week
4.85
1.63
Teach me how to keep the patient physically comfortable
4.80
1.54
Patient’s psychosocial needs Patient’s psychosocial needs
Patient’s physical needs
Procedure Permission to conduct the study was granted by the Institutional Review Board for the Protection of Human Subjects and the Hospice agency prior to data collection. The study was conducted retrospectively, during the bereavement period, two to six months after the death of the hospice patient. The caregivers completed demographic data and indicated the amount of pain experienced by the hospice patient prior to completing the Q-sort. Study findings The 10 most helpful and least helpful items were identified by the mean and standard deviation. The items were ranked by mean. In the eventofa tied mean score, the items were then further ranked according to the lowest standard deviation. A tie for number 10 resulted in the inclusion of only that item which had the lowest standard deviation. The means of the 60 nursing behaviors, ranked by the caregivers ranged from 5.65, SD .93 for the most helpful to 2.50, SD 1.24 for the least helpful. Specifically, the highest mean score was attributed to the item, “Listen to the patient/listen to what the patient wants” (see Table 1). The lowest mean score was attributed to the item, “talk with me about my guilt” (see Table 2). Of the 10 items ranked most helpful by the primary caregivers, two related to patient’s physical needs, five related to patient’s psychosocial needs, and three related to caregivers psychosocial needs (see Table 1). Ofthe 10 items ranked least helpful by the primary caregivers, three related to patient’s physical needs, and seven related to caregiver’s psychosocial needs (see Table 2).
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read on the large print, 3 x 5 inch cards and that 30 to 45 minutes were required to complete the Q-sort.
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The means of the three categories A,
Table 2. PRIMARY CAREGIVERS’ perceptions of the 10 LEAST helpful nursing behaviors in a home care hospice setting.
Category
B, C, as ranked by the hospice nurses,
Nursing behavior
Mean
SD
Caregiver’s psychosocial needs
Talk with me about my guilt
2.50
1.24
Caregiver’s psychosocial needs
Cry with me
2.70
1.17
Caregiver’s psychosocial needs
Help me to make funeral arrangements
2.85
1.81
Caregiver’s psychosocial needs
Attend the funeral and/or go to the funeral home when the patient dies
2.95
1.47
Patient’s physical needs
Assist me in establishing a method for recording medications
3.15
1.42
Patient’s physical needs
Teach me how to turn and position the patient
3.25
1.07
Assist me in learning how to change the bed sheets with the patientin bed
3.25
1.11
3.25
1.25
3.25
1.55
3.30
1.30
Patient’s physical needs
Caregiver’s psychosocial needs Caregiver’s psychosocial needs Caregiver’s psychosocial needs
Recognize my need to talk about things unrelated to death Help me to facereality in my own way in my own time Assure me that the patient can be readmitted to the hospital if necessary
The means ofthe three categories A, B, C, as ranked by the primary caregivers, were 4.05, 4.21, and 3,74 respectively. The highest mean score was attributed to Category B, nursing behaviors which dealt primarily with the psychosocial needs of the patient and the lowest mean was attributed to Category C, nursing behaviors which dealt primarily with the psychosocial needs of the caregivers (see Table 3). The means of the 60 nursing behaviors, ranked by the hospice nurses ranged from 6.20, SD .45 for the most helpful to 1.80, SD 1.30 for the least helpful (see Table 4). Specifically, the highest mean score was attributed to the item, “Assure the caregiver that nursing services will be available 24 hours a day, seven days a week” (see Table 4). The lowest mean score Was attributed to the item, “Describe how to keep the patient well groomed” (see Table 5). Ofthe 10 items ranked most helpful, by the hospice nurses, two related to
patient’s physical needs, five related to patient’s psychosocial needs, and three related to caregiver’s psychosocial needs (see Table 4). Ofthe 10 items ranked least helpful by the hospice nurses, six related to patient’s physical needs, one related to patient’s psychosocial needs, and three related to caregiver’s psychosocial needs (see Table 5). Table 3. Means and standard deviation of primary caregivers rankings of the 60 nursing behaviors by category. Category of need addressed A Patient’s physical needs B Patient’s psychosocial needs C Caregiver’s psychosocial needs 001 **p=.
M
SD
4.05
.526
4.21** .247
3.74
.482
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were 3.58, 4.46 and 3.94 respectively. The highest mean was attributed to the category of nursing behaviors which dealt primarily with the psychosocial needs of the patient. The lowest mean was attributed to the category of nursing behaviors which dealt primarily with the physical needs of the patient (see Table 6). Comparison of the primary caregivers’ responses and the hospice nurses’ responses revealed that both groups rated the category ofnursing behaviors which dealt primarily with the psychosocial needs of the patient as significantly more helpful than the two other categories (see Table 3 and 6). A t-test revealed that for the caregivers, the nursing behaviors in Category B, addressing the patient’s psychosocial needs, were perceived as significantly more helpful (p .001) than those behaviorsin Category C, addressing the caregivers psychosocial needs (see Table 3). A t-test revealed that for the hospice nurses, the nursing behaviors in Category B addressing the patient’s psychosocial needs, were also significantly more helpful (p < .05) than the nursing behaviors in Category A and Category C (see Table 6). Pearson correlations were obtained for the variables: • Age of primary caregiver, • • • • •
Sex of primary caregiver, Relationship to the patient, Days in the hospice program, Days of bereavement, Theamount of carerequired by the patient (as perceived by the primary caregiver),
• The amount of pain experienced by the patient (as perceived by the caregiver), • The mean ratings for each category of nursing behavior (see Table 7).
American Journal ofHospice & Palliative Care September/October1992
Table 4. HOSPICE NURSES’ perceptions of the 10 MOST helpful nursing behaviors in a home care hospice setting. Category Caregiver’s psychosocial needs Patient’s physical needs Patient’s psychosocial needs Patient’s psychosocial needs Patient’s psychosocial needs Patient’s psychosocial needs Patient’s physical needs Caregiver’s psychosocial needs
Caregiver’s psychosocial needs
Patient psychosocial needs
Nursing behavior Assure the caregiver that nursing services will be available 24 hours a day, 7 days a week Teach the caregiver how to keep the patient physically comfortable Help the patient to feel safe ventilating anger, sadness, anxiety and other feelings Answer the patient’s questions honestly Listen to the patient/Listen to what the patient wants Assure the patient that nursing services are available 24 hours aday,7daysaweek Teach the caregiver how to relieve the patient’s symptoms Provide the caregiver with the information necessary if a home death occurs (e.g. who to notify and when to an~angeremoval of the body) Help the caregiver to feel safe ventilating anger, sadness, anxiety and other feelings Recognize when the patient needs to talk about death and dying
Care requirements The patient’s care requirements, as perceived by the primary caregivers, were positively associated with a perceived greater helpfulness of nursing behaviors in the category of meeting the physical needs of the patient (r = 0.54, p = .007, r2 = .29). Greater care requirements by the patient, as perceived by the primary caregivers, were inversely associated with perceived helpfulness of nursing behaviors in the category of meeting the psychosocial needs of the caregivers (r = —0.43, p = 0.028, r2 = 0.18) (see Table 7). The primary caregivers’ perceptions of the helpfulness of nursing behaviors attending to the patient’s physical needs was inversely associated with the perceived helpfulness of nursing behavior attending to the patient’s psychosocial needs (r = —0.49, p = 0.006, r2 = 0.24). Also, the primary
Mean
SD
6.20
.45
6.00
1.23
5.80
1.10
5.80
1.30
5.80
1.64
5.60
1.14
5.40
.89
5.40
.89
5.40
.89
5.20
.45
caregivers’ perceptions of the helpfulness of nursing behavior attending to the patient’s physical needs were inversely associated with the perceived helpfulness of nursing behaviors attending to their own psychosocial needs (r = —0.87, p = .000, r2 = 0.75) (see Table 7). These findings support those of McGinnis. Pain control There were four items in the Q-sort that addressed pain management. None of these items were significantly correlated with the variable of the amount of pain experienced by the patient, as perceived by the primary caregiver. “Teach me how to keep the patient comfortable,” and, “Teach me how to give pain medications,” were ranked 10th and 12th respectively by the primary caregivers. Assurance ofservice There were two items in the Q-sort that addressed the assurance that nursing services were available 24 hours a
Table 5. HOSPICE NURSES’ perceptions of the 10 LEAST helpful nursing behaviors in a home care hospice setting. Category Patient’s physical needs Patient’s physical needs Patient’s physical needs Caregiver’s psychosocial needs Caregiver’s psychosocial needs Patient’s physical needs Patient’s physical needs Caregiver’s psychosocial needs Caregiver’s psychosocial needs Patient’s psychosocial needs Patient’s physical needs
Nursing behavior Describe how to keep the patient well groomed Assist the caregiver to provide a clean, neat, environment for the patient Do not encourage the patient to have false hope Cry with the caregiver Pray with the caregiver Teach the caregiver to prevent long term complications of bedrest Teach the caregiver how to adjust the diet as needed Teach the caregiver how to adjust the diet as needed Help the caregiver feel safe ventilating anger, sadness, anxiety and other feelings Encourage the patient to hope Teach the caregiver how to give some of the care to the patient
American Journal of Hospice & Palliative Care September/October 1992
Mean
SD
1.80
1.30
2.20
.45
2.20 2.40 2.80
1.30 1.34 .84
2.80
1.30
2.80
1.48
2.80
1.48
3.00 3.00
.71 1.00
3.00
1.41
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Table 6. Meansand standard deviations ofhospice nurses’ rankings of the 60 nursing behaviorsby category. Category of need addressed A Patient’s physical needs B Patient’s psychosocial needs C Caregiver’s psychosocial needs 05 *p
Abstract The purpose of this study was to determine those nursing behaviorsperceived as mosthelpful and least helpful by primary caregivers and by hospice nurses in a home-care hospice setting. A Q-sort of 60 nursing behaviors rankedfrom most to least helpful was completed by 20 caregivers, during the bereavement period and by five hospice nurses, who were currently employed by the hospice. These nursing behaviors were categorized as: • Nursing behaviors related to the patient’s physical needs; • Nursing behaviors related to the patient’s psychosocial needs; and • Nursing behaviors related to the psychosocial needs of the caregivers.
Introduction Caring is a concept central to nursing. Although nurses provide much Patricia Y Ryan, RN, MSN, OCN, is affiliated with the Jessamine County Hospice, Inc., Nicholasville, Kentucky. and isafaculty member at the University of Kentucky College ofNursing.
direct care to patients, they are increasingly directing their efforts toward involving patients in their own care. The goal of treatment in terminal illness is more than the control of symptoms, it is that the patient and family enjoy the highest quality
Although nurses provide much direct care to patients, they are increasingly directing their efforts toward involvingpatients in their own care. of life possible, although the quantity of that life may be limited. Terminal careinvolves a holistic andindividualizedapproach tothe patient, the family and the situation. According to the National Hospice Organization, approximately 250,000 patients were servedby hospices in the United States in 1989. This re-orientation to selfcare entails eliciting directly from the
22
patient and family what their needs are and how these needs can best be met. Allowing the patient control in his/her care is important in all aspects ofnursing, but especially in hospice nursing, which deals solely with terminally ill patients. Maintaining control in decisions about care is very important because so many other aspects oftheir illness are beyond control. This study was a replication of the study conducted by McGinnis.’ Additions to the study were the identification of hospice nurses’ responses and primary caregivers’ perceptions of the amount of care required by the patient and the amount of pain experienced by the patient. Statement ofpurpose The purpose of this study was to determine those nursing behaviors perceived as most and least helpful by primary caregivers of home-care hospice patients, and by hospice nurses. Study questions Are the nursing behaviors chosen as helpful related to the primary caregivers’ perceptions of the amount of care required by the patient?
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• Are the nursing behaviors chosen as helpful related to the primary caregivers’ perception of the amount of pain experienced by the patient? • Are the nursing behaviors chosen as helpful related to the nature of the relationship of the primary caregiver to the patient? • Does the length of time since the death of the hospice patient influence the choice of most or least helpful nursing behaviors? Assumptions The following assumptions about caring in nursing were utilized for this study: • Caring is central to nursing.2 • Care enhances patients’ quality of life. • Hospice nursing involves caring. Conceptualframework Watson’s theory of care was used as a framework for this study. She emphasizes the individuality of each person and refers to the person as a holistic being comprised of physical, intellectual, emotional and spiritual aspects.3 Hertheory proposes that the practice of caring is central to nursing and that the goal of nursing is to help persons gain a higher degree of harmony between mind, body, and soul. Patients need to be involved in their care and the nurse assists them either in attaining or maintaining health or in dying a peaceful death. Watson’s framework applies easily to hospice nursing. The caring she conceptualizes pertains to the caregivers as well as to the patients. Hospice nurses need to know how nursing behaviors are perceived if they are to promote caring and quality of life for terminally-ill patients and their caregivers.
Literature review Quality of life Quality oflife is an elusive concept, but it has been a consistent focus in the issue of death with dignity.’ Three authors have addressed factors that determine the perception of quality of life. Young and Longman4 conducted a
Thepurpose of this study was to determine those nursing behaviors perceived as most and least helpful by primary caregivers of home-care hospice patients, and by hospice nurses. study that investigated variables associated with quality of life as perceived by 23 persons diagnosed with melanoma. They found that symptom distress was inversely associated with quality of life; social dependency was inversely related to quality of life; and behavior-morale was positively associated with quality of life. Martocchio5 discussed a variety of approaches in examining quality of life issues; dying with dignity, good death, healthy dying, and comfort care. She concluded that nurses may assist patients in achieving desired ways of dying by identifying patients’ personal wants and needs. McCartney and Larson6 discussed the issue of quality of life in persons with a gynecologic cancer diagnosis. They emphasize that an assessment of the benefits of treatment must include quality of life as well as quantity of survival. They discuss hospice and the importance of providing patients and families accurate information in order to allow them personal choice.
American Journal of Hospice & Palliative Care
Caring Several studies have been conducted concerning care and how care is perceived by the nurse, the patient, and the family (Brown7 Larson8 Riemen9). These studies identified nursing behaviors that convey caring. Comparisons and contrasts in perceptions were made with emphasis, again, on the importance of involving patients in their care. Research identifying nursing behaviors that are desired by patients and their families has major relevance to this study. Four studies which used a Q-sort method of obtaining this information were reviewed. Two of the studies were conducted with hospitalized patients and two more recent studies were conducted with patients in a home-care hospice setting. Irwin and Meiert°conducted an exploratory study to operationalize the concept of support for families of fatally-ill hospitalized persons. Using Qsort methodology, 60 items identified as behavior conveying support were ranked from most to least desirable by 20 health care professionals and 20 relatives of oncology patients. Nursing behaviors that conveyed honesty, the ability to answer questions and give clear explanations, the ability to provide information, the provision of comfort and genuine interest, were viewed as most supportive. Freihofer and Felton” conducted a study to determine nursing behaviors which offered the greatest support, comfort and ease of suffering. An 88item Q-sort method was used with a convenience sample of 25 loved ones of terminally-ill, hospitalized cancer patients. The nursing behaviors were classified in a three-tier category progressing from the physical needs of the patient, to the emotional needs of the patient, to the emotional needs of the bereaved. The nursing behaviors identified as most desirable pertained
23
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to the patient. The least desirable nursing behaviors pertained to theemotional needs of the bereaved. This study supported both the most highly rated and lowest rated behaviorsofIrwin and Meier’s research. Skoruphaand Bohnet’2 conducted a study to determine which nursing behaviors were perceived as most helpful to 20 primary caregivers in a homecare hospice setting using Q-sort methodology. Seventy-five nursing behaviors, falling into one of three categories, were ranked from most helpful to least helpful. They concluded that caregivers found nursing behavior directed toward the patient’s physical care and emotional needsto be most helpful. Skorupha and Bohnet suggested that hospice nurses assess each caregiver’s priorities for care in order to allow the patient and family as much control as possible. McGinnis conducted an exploratory study modified from Skorupha and Bohnet’s study, to determine what supportive nursing behaviors were needed by primary caregivers in a home-care hospice setting to maintain quality of life. She utilized the same Q-sort methodology, reduced to 60 nursing behaviors, which fell into the same three categories as the Skorupha and Bohnet study. Twenty primary caregivers ranked these behaviors from most helpful to least helpful. Her results correlated with those of Irwin and Meier, Freihofer and Felton, and Skorupha and Bohnet. However, she concluded that primary caregivers found nursing behaviors relating to the patient’s psychosocial needs as significantly more helpful than behaviors related to the patient’s physical needs or the caregiver’s psychosocial needs. She suggested that including the patient and family in informed decision-making assists in maintaining control. She recommended being honest, informing families of changes
in thepatient’s condition, being directly supportive and communicative, and teaching the family the signs and symptoms of approaching death.
caregivers found nursing behavior directed toward the patient’s physical care and emotional needs to be most helpful. This review of literature attempted to define caring as a nursing construct, to present earlier studies of nursing behaviors that were perceived as helpful to families of home-care hospice patients, and to conceptualize quality of life. The benefit of hospice care to families needs to be further investigated, with essential information elicited directly from patients and their caregivers. Conceptual definitions
Primary caregiver
the person primarily responsible for the home-care hospice patient. This individual may not necessarily be a family member. —
Hospice nurse —a person functioning under the title of RN, registered and legally licensed and employed by the home-care hospice for at least one year. Nursing behaviors the 60 items listed in the Q-sort instrument of this study. —
Methodology Setting and subjects This study was conducted in a metropolitancity in the private residences of each of the 20 participating caregivers and in a private room in the hospice office for each of the five participating hospice nurses. The hospice is a private, non-profit home-care hos-
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pice agency. The program is licensed by the state and certified by Medicare and Medicaid. The program has been operating since 1978 and has a daily census of approximately 90 terminallyill patients. A list of all deceased hospice patients served within the prior two to six months was compiled, by their identification numbers, from the hospice medical records. Using the table of random numbers,’3 the subjects were selected and checked for eligibility. Upon meeting all of the criteria, these primary caregivers were contacted by telephone and invited to participate in the study. Using the same table of random numbers, five hospice nurses were selected from a list of employee numbers and invited to participate in the study. Participation was voluntary. Of the 20 participating primary caregivers, the majority (75 percent) were female spouses. The primary caregivers ranged in age from 35 to 74 with a mean age of 54.6 years, SD of 64.3. Ninety percent of these hospice patients died at home. The majority of patients required moderate (40 percent) to a great deal (60 percent) of care and experienced moderate (35 percent) to a great deal (45 percent) of pain, as perceived by the primary caregivers. Data gathering devices A Q-sort methodology was used. In a Q-sort, the subject is presented with a set of cards on which words, phrases, statements, or other messages are written. The subject is then asked to sort the cards according to a particular dimension such as approval/disapproval, most like me/least like me, or highest priority/lowest priority. The number to be sorted into each group is predetermined.14 The Q-sort used in this study, borrowed with permission from McGinnis, consisted of 60 nursing behaviors that were divided equally into a three-tier classification system:
American Journal of Hospice & Palliative Care September/October 1992
• Behaviors related to the patient’s physical needs; • Behaviors related to the patient’s psychosocial needs; • Behaviors related to the psychosocial needs of the caregiver. These three categories were used in the analysis and interpretation of the findings. The subjects were requested to arrange the randomly shuffled 60 nursing behaviors, typed on 3 x 5 inch cards, into seven groups from most helpful to least helpful, with a predetermined number of cards in each group. Then each nursing behavior was given a score ranging from 1 least helpful; to 7 most helpful; according to the sorting by the subject. The mean and standard deviation for each behavioral —
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statement were calculated. Content validity for the modified instrument was examined through review of the items by hospice nurse members of the state hospice council.’ All membersagreed that the items were valid interventions for hospice nurses. “The split-half technique was used to evaluate the internal consistency of the revised instrument. The SpearmanBowman prophecy formula identified reliability coefficients of .97 for Category A, .92 for Category B, and .95 for Category C. The reliability coefficient for the entire instrument was .98. The internal consistencyof therevised instrument is therefore strongly supported.” A pilot study was conducted to pretest the study procedures. Findings were that the directions for the Q-sort were clear, the 60 items were easily
Table 1. PRIMARY CAREGIVERS’ perceptions of the 10 MOST helpful nursing behaviors in a home care hospice setting.
Category
Nursing behavior
Mean
SD
Patient’s psychosocial needs
Listen to the patient/Listen to what the patient wants
5.65
.93
Patient’s physical needs
Provide the patient with the necessary emergency measures if the need arises
5.45
1.91
Caregiver’s psychosocial needs
Assure me that the nursing services will be available 24 hours a day, 7 days a week
5.35
1.60
Patient’s psychosocial needs
Answer the patient’s questions honestly
5.00
.92
Patient’s psychosocial needs
Talk to the patient to reduce his/her fears
4.95
1.05
Caregiver’s psychosocial needs
Provide me with information necessary if a home death occurs (e.g. who to notify and when to arrange removal of the body)
4.90
1.17
Caregiver’s psychosocial needs
Answer my questions honestly, openly and willingly
4.90
1.21
Stay with the patient during difficult times
4.85
1.31
Assure the patient that nursing services are available 24 hours a day, 7 days a week
4.85
1.63
Teach me how to keep the patient physically comfortable
4.80
1.54
Patient’s psychosocial needs Patient’s psychosocial needs
Patient’s physical needs
Procedure Permission to conduct the study was granted by the Institutional Review Board for the Protection of Human Subjects and the Hospice agency prior to data collection. The study was conducted retrospectively, during the bereavement period, two to six months after the death of the hospice patient. The caregivers completed demographic data and indicated the amount of pain experienced by the hospice patient prior to completing the Q-sort. Study findings The 10 most helpful and least helpful items were identified by the mean and standard deviation. The items were ranked by mean. In the eventofa tied mean score, the items were then further ranked according to the lowest standard deviation. A tie for number 10 resulted in the inclusion of only that item which had the lowest standard deviation. The means of the 60 nursing behaviors, ranked by the caregivers ranged from 5.65, SD .93 for the most helpful to 2.50, SD 1.24 for the least helpful. Specifically, the highest mean score was attributed to the item, “Listen to the patient/listen to what the patient wants” (see Table 1). The lowest mean score was attributed to the item, “talk with me about my guilt” (see Table 2). Of the 10 items ranked most helpful by the primary caregivers, two related to patient’s physical needs, five related to patient’s psychosocial needs, and three related to caregivers psychosocial needs (see Table 1). Ofthe 10 items ranked least helpful by the primary caregivers, three related to patient’s physical needs, and seven related to caregiver’s psychosocial needs (see Table 2).
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American Journal of Hospice & Palliative Care September/October 1992
read on the large print, 3 x 5 inch cards and that 30 to 45 minutes were required to complete the Q-sort.
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The means of the three categories A,
Table 2. PRIMARY CAREGIVERS’ perceptions of the 10 LEAST helpful nursing behaviors in a home care hospice setting.
Category
B, C, as ranked by the hospice nurses,
Nursing behavior
Mean
SD
Caregiver’s psychosocial needs
Talk with me about my guilt
2.50
1.24
Caregiver’s psychosocial needs
Cry with me
2.70
1.17
Caregiver’s psychosocial needs
Help me to make funeral arrangements
2.85
1.81
Caregiver’s psychosocial needs
Attend the funeral and/or go to the funeral home when the patient dies
2.95
1.47
Patient’s physical needs
Assist me in establishing a method for recording medications
3.15
1.42
Patient’s physical needs
Teach me how to turn and position the patient
3.25
1.07
Assist me in learning how to change the bed sheets with the patientin bed
3.25
1.11
3.25
1.25
3.25
1.55
3.30
1.30
Patient’s physical needs
Caregiver’s psychosocial needs Caregiver’s psychosocial needs Caregiver’s psychosocial needs
Recognize my need to talk about things unrelated to death Help me to facereality in my own way in my own time Assure me that the patient can be readmitted to the hospital if necessary
The means ofthe three categories A, B, C, as ranked by the primary caregivers, were 4.05, 4.21, and 3,74 respectively. The highest mean score was attributed to Category B, nursing behaviors which dealt primarily with the psychosocial needs of the patient and the lowest mean was attributed to Category C, nursing behaviors which dealt primarily with the psychosocial needs of the caregivers (see Table 3). The means of the 60 nursing behaviors, ranked by the hospice nurses ranged from 6.20, SD .45 for the most helpful to 1.80, SD 1.30 for the least helpful (see Table 4). Specifically, the highest mean score was attributed to the item, “Assure the caregiver that nursing services will be available 24 hours a day, seven days a week” (see Table 4). The lowest mean score Was attributed to the item, “Describe how to keep the patient well groomed” (see Table 5). Ofthe 10 items ranked most helpful, by the hospice nurses, two related to
patient’s physical needs, five related to patient’s psychosocial needs, and three related to caregiver’s psychosocial needs (see Table 4). Ofthe 10 items ranked least helpful by the hospice nurses, six related to patient’s physical needs, one related to patient’s psychosocial needs, and three related to caregiver’s psychosocial needs (see Table 5). Table 3. Means and standard deviation of primary caregivers rankings of the 60 nursing behaviors by category. Category of need addressed A Patient’s physical needs B Patient’s psychosocial needs C Caregiver’s psychosocial needs 001 **p=.
M
SD
4.05
.526
4.21** .247
3.74
.482
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were 3.58, 4.46 and 3.94 respectively. The highest mean was attributed to the category of nursing behaviors which dealt primarily with the psychosocial needs of the patient. The lowest mean was attributed to the category of nursing behaviors which dealt primarily with the physical needs of the patient (see Table 6). Comparison of the primary caregivers’ responses and the hospice nurses’ responses revealed that both groups rated the category ofnursing behaviors which dealt primarily with the psychosocial needs of the patient as significantly more helpful than the two other categories (see Table 3 and 6). A t-test revealed that for the caregivers, the nursing behaviors in Category B, addressing the patient’s psychosocial needs, were perceived as significantly more helpful (p .001) than those behaviorsin Category C, addressing the caregivers psychosocial needs (see Table 3). A t-test revealed that for the hospice nurses, the nursing behaviors in Category B addressing the patient’s psychosocial needs, were also significantly more helpful (p < .05) than the nursing behaviors in Category A and Category C (see Table 6). Pearson correlations were obtained for the variables: • Age of primary caregiver, • • • • •
Sex of primary caregiver, Relationship to the patient, Days in the hospice program, Days of bereavement, Theamount of carerequired by the patient (as perceived by the primary caregiver),
• The amount of pain experienced by the patient (as perceived by the caregiver), • The mean ratings for each category of nursing behavior (see Table 7).
American Journal ofHospice & Palliative Care September/October1992
Table 4. HOSPICE NURSES’ perceptions of the 10 MOST helpful nursing behaviors in a home care hospice setting. Category Caregiver’s psychosocial needs Patient’s physical needs Patient’s psychosocial needs Patient’s psychosocial needs Patient’s psychosocial needs Patient’s psychosocial needs Patient’s physical needs Caregiver’s psychosocial needs
Caregiver’s psychosocial needs
Patient psychosocial needs
Nursing behavior Assure the caregiver that nursing services will be available 24 hours a day, 7 days a week Teach the caregiver how to keep the patient physically comfortable Help the patient to feel safe ventilating anger, sadness, anxiety and other feelings Answer the patient’s questions honestly Listen to the patient/Listen to what the patient wants Assure the patient that nursing services are available 24 hours aday,7daysaweek Teach the caregiver how to relieve the patient’s symptoms Provide the caregiver with the information necessary if a home death occurs (e.g. who to notify and when to an~angeremoval of the body) Help the caregiver to feel safe ventilating anger, sadness, anxiety and other feelings Recognize when the patient needs to talk about death and dying
Care requirements The patient’s care requirements, as perceived by the primary caregivers, were positively associated with a perceived greater helpfulness of nursing behaviors in the category of meeting the physical needs of the patient (r = 0.54, p = .007, r2 = .29). Greater care requirements by the patient, as perceived by the primary caregivers, were inversely associated with perceived helpfulness of nursing behaviors in the category of meeting the psychosocial needs of the caregivers (r = —0.43, p = 0.028, r2 = 0.18) (see Table 7). The primary caregivers’ perceptions of the helpfulness of nursing behaviors attending to the patient’s physical needs was inversely associated with the perceived helpfulness of nursing behavior attending to the patient’s psychosocial needs (r = —0.49, p = 0.006, r2 = 0.24). Also, the primary
Mean
SD
6.20
.45
6.00
1.23
5.80
1.10
5.80
1.30
5.80
1.64
5.60
1.14
5.40
.89
5.40
.89
5.40
.89
5.20
.45
caregivers’ perceptions of the helpfulness of nursing behavior attending to the patient’s physical needs were inversely associated with the perceived helpfulness of nursing behaviors attending to their own psychosocial needs (r = —0.87, p = .000, r2 = 0.75) (see Table 7). These findings support those of McGinnis. Pain control There were four items in the Q-sort that addressed pain management. None of these items were significantly correlated with the variable of the amount of pain experienced by the patient, as perceived by the primary caregiver. “Teach me how to keep the patient comfortable,” and, “Teach me how to give pain medications,” were ranked 10th and 12th respectively by the primary caregivers. Assurance ofservice There were two items in the Q-sort that addressed the assurance that nursing services were available 24 hours a
Table 5. HOSPICE NURSES’ perceptions of the 10 LEAST helpful nursing behaviors in a home care hospice setting. Category Patient’s physical needs Patient’s physical needs Patient’s physical needs Caregiver’s psychosocial needs Caregiver’s psychosocial needs Patient’s physical needs Patient’s physical needs Caregiver’s psychosocial needs Caregiver’s psychosocial needs Patient’s psychosocial needs Patient’s physical needs
Nursing behavior Describe how to keep the patient well groomed Assist the caregiver to provide a clean, neat, environment for the patient Do not encourage the patient to have false hope Cry with the caregiver Pray with the caregiver Teach the caregiver to prevent long term complications of bedrest Teach the caregiver how to adjust the diet as needed Teach the caregiver how to adjust the diet as needed Help the caregiver feel safe ventilating anger, sadness, anxiety and other feelings Encourage the patient to hope Teach the caregiver how to give some of the care to the patient
American Journal of Hospice & Palliative Care September/October 1992
Mean
SD
1.80
1.30
2.20
.45
2.20 2.40 2.80
1.30 1.34 .84
2.80
1.30
2.80
1.48
2.80
1.48
3.00 3.00
.71 1.00
3.00
1.41
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Table 6. Meansand standard deviations ofhospice nurses’ rankings of the 60 nursing behaviorsby category. Category of need addressed A Patient’s physical needs B Patient’s psychosocial needs C Caregiver’s psychosocial needs 05 *p
