Needs assessment of spouses caring for terminally ill mates at home: implications for nursing

A retrospective descriptive study was conducted to assess the needs of spouses caring for terminally ill mates at home. Four questions were studied: 1. What are the needs of the spouse who is providing primary care to a dying mate at home? 2. Are some of the identified needs met or partially unmet, as perceived by the spouse? 3. Will spouses classified indifferent categories have different expressed needs? 4. Will spouses classified in different categories have variant degrees of unmet needs? The instrument used in this study was a questionnaire designed by the investigator. The questionnaire dealt with five major categories of need, plus the opportunity for the spouse to add personal input. The study population consisted of a spouse taking care of the terminally ill mate at home for a minimum of four weeks. The data analysis indicated that there was a statistically significant difference between the number of hospitalizations the dying mate required three months before death, and the increased expressed needs of the care giver. There was also a significant difference between care givers who had previously taken care of a dying person at home to one who had not. The spouse with previous experience had significantly fewer expressed needs in the area of talking to others about the impending death and sequela. The category relating to the personal needs of the care giver produced the greatest degree of unmet needs. It appears that most spouses give up many personal needs to devote more time to the ill mate. A trend was also depicted that male care givers have more expressed needs than females in the area of knowing how to give physical care to the dying mate. The care giver also had the opportunity to respond to open-ended questions. The majority of spouses stated the experience was positive for them and they would care for their spouses at home again, given the opportunity. The county visiting nurse was rated most frequently as the most helpful aide to the spouse caring for a dying mate at home. The implications of these findings will assist nursing and other health care professionals provide anticipatory guidance to both the care giver and patient, thereby promoting successful home care of the terminally ill.

NEEDS ASSESS1\.1ENT OF SPOUSES CARING FOR TERMINALLY ILL NlATES AT HarviE: IMPLICA TIONS FOR NURSING by Thomas Mark Loken A thesis submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of rv1aster of Science College of Nursing The University of Utah March, 1981 Copyright @ Thomas Mark Loken 1981 All Rights Reserved THE UNIVERSITY OF UTAH GRADUATE SCHOOL SUPERVISORY COMMITTEE APPROVAL of a thesis submitted by Thomas Mark Loken I have read this thesis and have found it to be of satisfactory quality for a master's de~~ee. }/d4I . Ld~ ,'11 ./ te ~ Chairman, Supervisory Committee ~ad ::s t:~;:nd have fOU:d it to be of satisfaC~qUalilY for a master's IJ te } Member, Supervisory Committee ~ har::read this thesIs and have fOUO~ it 10 be of satisfacto~ quality for a master's J, 13.11f/ ,a~=rn -().~ Glenn M. Vernon, Ph.D. Member, Supervisory Committee THE UNIVERSITY OF UTAH GRADUATE SCHOOL FINAL READING APPROVAL To the Graduate Council of The University of Utah: I have read the thesis of Thomas Mark Loken in its final form and have found that (1) its format, citations, and bibliographic style are consistent and acceptable; (2) its illustrative materials including figures, tables, and charts are in place; and (3) the final manuscript is satisfactory to the Supervisory Committee and is ready for submission to the Graduate School. 1dv, ;1//911 Date Member, Supervisory Committee he Major Department Linda K. Amos, Ed.D., F.A.A. N. Chairman! Dean Approved for the Graduate Council :l . 1fl . ':jacr*1Ld ~ ;Z:~:/i;v (I JI James L. Clayton . . Dean of The Graduate School ABSTRACT A retrospective descriptive study was conducted to assess the needs of spouses caring for terminally ill mates at home. Four questions were studied: 1. What are the needs of the spouse who is providing primary care to a dying mate at home? 2. Are some of the identified needs met or partially unmet, as per­ceived by the spouse? 3. Will spouses classified in different categories have different expressed needs? 4. Will spouses classified in different categories have variant degrees of unmet needs? The instrument used in this study was a questionnaire designed by the investigator. The questionnaire dealt with five major categories of need, plus the opportunity for the spouse to add personal input. The study population consisted of a spouse taking care of the terminally ill mate at home for a minimum of four weeks. The data analysis indicated that there was a statistically significant difference betw'een the number of hospitalizations the dying mate required three months before death, and the increased expressed needs of the care giver. There was also a significant difference between care givers who had previously taken care of a dying person at home to one who had not. The spouse with previous experience had significantly fewer expressed needs in the area of talking to others about the impending death and sequela. The category relating to the personal needs of the care giver proouced the greatest degree of unmet needs. It appears that most spouses give up many personal needs to devote more time to the ill mate. A trend was also depicted that male care givers have more expressed needs than females in the area of knowing how to give physical care to the dying mate. The care giver also had the opportunity to respond to open-ended ques­tions. The majority of spouses stated the experience was positive for them and they would care for their spouses at home again, given the opportunity. The county visiting nurse was rated most frequently as the most helpful aide to the spouse caring for a dying mate at home. The implications of these findings will assist nursing and other health care professionals provide anticipatory guidance to both the care giver and patient, thereby promoting successful home care of the terminally ill. v TABLE OF CONTENTS ABSTRACT ••. LIST OF TABLES ACKNOvVLEDGMENTS • Chapter 1. INTRODUCTION A~TI REVIEW OF LITERATURE •• Purpose • • • • • • • Significance. • • • • • Review of Literature. • II. THEORETICAL FRA:MEWORK. • • • • • • • Summary. .. • • • • • • • • • • • • • Objective • • • • • • • • • • • • • • • Research Questions • • • • • • • • Operational Definitions of Terms • . Assumptions. . • . • . • • • • III. METHODS AND RESEARCH DESIGN. Method of Study. • • • • • Design of Study. . • • • • • • • • Study Population. • • • • • Criteria for Inclusion. • • • • • Instrument. • . • • • • • • • • • • • • • Procedure . . • • • • • • • • • . • • • • • IV. DATA ANALYSIS AND FINDINGS • • • • • • • • Study Population. • . • • . . • • . • Questionnaire Return. • . • • • • . . Statistics • • • Data Analysis • • . • • • • • • .. • • • • • • • • • . Page iv viii x 1 2 2 2 7 9 10 10 10 11 13 13 13 14 15 15 17 18 18 18 18 19 Chapter V. DISCUSSION. Purpose of Study • . . Discussion. • . • •• VI. SUMMARY AND LMPLICATIONS • Summary. • • . • . . . • . • • • • Implications for Nursing. . • • • • APPENDIX A. COVER LETTER. B. QUESTIONNAIRE FORM REFERENCES. • • • • • •• . . . . . . . . . . . . . . . . . vii Page 46 46 46 54 54 57 59 61 69 LIST OF TABLES Table 1. Per Cent of Needs Expressed and Met: Knowledge of - Physical Care. • • • • • • • • • . • • . • • • . • 2. Per Cent of Needs Expressed and Met: Physica 1 lliness 3. and Progression. • • . • • • • . • Per Cent of Needs Expressed and Met: Access to Some­one with Whom Spouse Could Talk. • • • • . • • • . • . 4. Per Cent of Needs Expressed and Met: Need for Outside Support. • • • • • • • . . • • • • 5. Per Cent of Needs Expressed and Met: Own Needs 6. Number of Expressed Needs Compared to Age. . 7 . Total Number of Expressed Needs Compared to Different Page 21 23 24 25 27 28 Spouse Groups . . • . . • • • • • • . . • . • . • • • 30 8. Total Number of Expressed Needs Compared to Different Spouse -Groups • . • • • • • • • • • • . • • • . • . . 31 9. Average Per Cent of Expressed Needs in Each Category Using Total Population.·. • • . • . . . • • • . • . . 10. Comparing the Per Cent of Expressed Needs by Category 32 for Male - Female • . . • • . • . • • • . • • • • • • 34 11. Comparing the Per Cent of Expressed Needs by Category of Spouses Who Have/Haven't Cared for a Dying Person a t Home Before. • • • • • • • • • • • • . . . • • . 35 12. 13. Comparing the Per Cent of Expressed Needs by Category of Spouses Who Would/Would Not Take Care of Their Mates Again at Home • • • . • . • . . • . . . • • . Comparing the Degree Needs Were Met between Male and Female Care Givers • . • • • • • • • . • • . . . 36 38 Table 14. Comparing the Degree Needs \Vere Met between Care­givers Who Had Experience Caring for the Dying at Home, to Those That Had No Experience. . • . . . • • 15. Comparing the Degree Needs \Vere Met between Care­givers Who Would Repeat the Experience to Those Who Page 39 Would Not. • • • • • • • • • • . • • • • • • . • • . 40 16. Other Needs You May Have Had That You Would Like to 17. 18. Mention. • • • • • • • . • • • . • • . • • • • The Three Biggest or Most Important Needs While Taking Care of Spouse and Degree They Were Met • The Most Helpful Aides • • . • • • • • • • • • • 19. Per sonal Gain from the Experience of Caring for Spouse at Home . • • . • • . . . • • . • . . . 41 43 44 45 ACKNO\V LEDGMENTS Grateful acknowledgment is given to Mary Jo Bulbrook, Margaret Dimorrl and Glenn Vernon who served on my thesis committee and contributed their time and many talents to the development of this thesis. I wish to thank Kenneth Peterson for his guidance and support during the data analysis. I also wish to thank the Douglas -Grant County Nursing Service for the friendliness and cooperation in allowing me to use their past clients as the study population. A special thanks is given to Sally Loken for her constant love and support throughout the writing of this manuscript. CHAPTER .1 INTRODUCTION AND REVIEW OF LITERATURE Caring for the terminally ill at home can produce stress and crisis for the care taker. Sylvia Lack (1979), who has worked with the Hospice program in the United States and Great Britain, noted a consistent pattern of families wanting to care for their dying relatives at home, and a large number of dying people wanted to be cared for at home throughout their ill­nesses. Lack believes that families and primary care givers are under great stress while caring for the dying at home, and therefore require support to fulfill their needs and to obtain their goals. Ryder and Ross (1979) pointed out that when the State of Connecticut did a survey of cancer patients between 1969 and 1971, 67% wanted to die at home; yet only 20% had the opportunity to do so. The desire of the dying patient to be with family is strong. Dubrey and Teril (1975) asked 50 cancer patients in a hospital, "What relationship is the most important to you right now?" First and second responses were family and spouse. When asked, "\Vhat do you thLnk about most when you are by yourself?"; the first response was "family." Much of the literature was focused on the dying patient's needs. There has been minimal study of the needs of the care giver. Hampe t s 2 research (1975) did identify the needs of the spouse when the terminally ill patient was in the hospital. However, the needs of the spouse may be entirely different at home from those that occur in the hospital. This study identified the needs of a care giver in a home setting. Purpose The purpose of this study was to identify the spouse's unique needs while taking care of a terminally HI patient at home and to determine to what degree the needs were met. Significance Many terminally ill patients wish to die at home. Also, the willingness of the families to accept home care exists. By identifying the unique needs, hopefully, nurses and other helping professionals can provide anticipatory guidance to both the care giver and patient, thereby promoting successful home care of the terminally ill. Review of Literature Most studies about death and dying have focused on: the dying person (Kubler-Ross, 1969), the grief and bereavement of the family after the death (Holmes, 1967), and crisis of the family during a member's illness (Olson, 1970). Recently, Hampe (1975) focused on the spouses' needs, met or unmet, during the hospital stay of their terminally iU mates. The eight needs identified were: 1. Need to be with the dying person; 2. Need to be helpful to the dying person; 3. Need for assurance of the comfort of the dying person; 4. Need to be informed of the mate's condition; 5. Need to be informed of the impending death; 6. Need to ventilate fee lings; 7. Need for comfort and support of family member s; 8. Need for acceptance, support, and comfort from health profes­sionals. 3 Dracup and Drew (1978) incorporated nursing intervention with these eight areas of need in order to assist spouses who had mates in a hospital coronary care unit. They found that through intervention, the spouses' needs were met significantly better in five areas out of the eight when compared with a group who had no specific nursing intervention in the area of Hampe's identified needs. Many authors have concluded or mentioned that one should keep family dynamics in mind while giving care to the patient. For example, Kubler­Ross (1969) identified a typical response by a spouse whose husband was dying. The wife displayed increased loneliness and resentment. The wife responsed to the ill patient as a child responds to a mother's desertion. Her point is that the family, not just the patient, needs support during this time. Fulton (1977) noted almost all families caring for the dying at home experienced feelings of inadequacy. Hinne (1979) observed two families caring for a dying member at home and developed seven requirements for successful home care: moral support. professional aid, special equipment. nursing skills to make a dying person comfortable, knowledge of the disease process and what to expect, to know when death is imminent, and finally, care of the newly dead. Sylvia Lack (1979), a leader' in the Hospice movement in the United States, cited an example in which a man had to needlessly admit his termi­nally ill wife to a hospital at night because he could not get someone to make an emergency home visit to perform a relatively simple procedure. There­fore, Lack concluded that the inability for the care giver to have someone to "count on" for help is a definite disadvantage. She also stated that having volunteers "patient sit" so the spouse could get out of the house for a break from the constant stress was a strong need. 4 The above articles and research studies all dealt,with some aspect of dying, or caring for the dying. But none specifically focused on the needs of the primary care giver while the terminally ill patient was at home. Two articles were found that were written by women who were themselves primary care givers for their terminally ill mothers at home. Fradd (1979), a nurse, explained the difficulty of caring for her mother at home. Fradd fS biggest problem was feelings of inadequacy. Even though she received much emo­tional support from professionals, inadequacy was still there. Gray (1977) stated the biggest problem was inexperience with' physical care. For example, 5 she did not know how to give the mother the bedpan the fir st evening at home. No one at the hospital had thought to include this in patient discharge educa­tion. Another strong need was to be told by others, "You are doing the best you can. fI Indeed, it is difficult for a person to be reassured or helped by support groups, such as neighbors. Aries (1974) believed that our present attitudes toward death date back to ancient pre-Christian civilization. The ancients feared being near the dead and kept them at a distance. In Rome, the law of the Twelve Tables forbade burial within the city. So, cemeteries were found outside the city. Kalish (1968) discovered the tendency for people to keep a safe distance away from the dying. He found that acceptability of living next to a dying neighbor rated below having an alien ethnic neighbor. Kubler -Ross (1969) pointed out that unexpected behaviors of the dying may emotionally hurt the family or care giver. The dying person who accepts death will separate slowly from the environment, including loved ones. Re­jection may be the family's interpretation of this behavior and family members may become hurt. Adams (1977) found that as the disease process progresses, the patient may become more dependent on the physician and may move away from the family. Silence becomes the language, and the family experiences anger, loneliness and rejection. All the authors pointed out the need of out­side emotional support for the family and care giver at this time. In summary, no empirical studies identifying the needs of the spouse while caring for the terminally ill patient have been published. Some work has been done on the needs of the spouse while the patient is in the hospital (Hampe, 1975; Dracup & Drew, 1978). However, these needs cannot be generalized to home care situations. Paramount to identifying the needs of the spouse while the ill mate is at home is the requirement that the needs be identified in the correct setting. 6 CHAPTER II THEORETICAL FRA:MEvVORK That illness in the family proouces a stressful event and in turn creates certain needs for the family was asserted by Feigenberg and Fulton (1977); Maddison and Raphael (1972); and MacVicar and Archbold (1976). Aguilera, Messick, and Farrel (1970) developed a paradigm of crisis develop­ment showing that a stressful event will cause disequilibrium and if enough balancing factors are not present, crisis will occur. The balancing factors Aguilera et al. (1970) identified are in three main groups: realistic perception of the event, adequate situational support, and adequate coping mechanisms. The stressor event is caring for the ill family member at home. From the event, balancing factors or needs of the spouse must be met in order for crisis to be minimized or alleviated, and home care to be less stressful, and there­fore, more successful. Caplan (1963) listed three main types of envi(["onmental life problems which may precipitate crisis. The first is loss of a source of satisfaction of basic needs, such as a death or departure of a loved one. The second is danger or threat of the above happening, for example, the anticipated death of a loved one. The third is a change that over-taxes one's capacity, for example, a role change. According to Maddison and Raphael (1972) the 8 degree of crisis depends on the amount of role change needed, the magnitude of the loss, and the source of previous coping mechanisms. Many authors agree that a crisis is an upset in a steady state, and is a period of disequilibrium. The disequilibrium is not an illness, but an upset in past patterns. Olson (1970) stated that illness in the family causes dis­equilibrium and therefore, crisis develops. Olson further stated that families' reactions to crisis from illness begins with an initial period of stunned denial. Crisis then progres ses into confusion, anxiety, and resent­ment towards the sick member. Finally, the family proceeds to a recovery and reorganization level which then produces homeostasis. Hill and Hansen (1964) cited four categories which influence the family's ability to cope with the illness experience. The categories are: characteristics of the event; perceived threat to family relationships, status and goals; resources available to the family; past experience with the same or similar situation. Characteristics of the event include such factors as: nature of the pathology and system effected; type of disability; prognosis; potential for rehabilitation; and family's perception of the illness. Perceived threat to family relationships, status and goals include such factors as: past family roles, relations,_ and communication patterns; the change in the above roles, relations, and patterns secondary to the illness (both real and per­ceived); decision-making patterns before and after the illness; individual and family 'life goals" and changes in life goals secondary to the illness; and feelings on the part of individual family members about the changes in 9 relationships, status, _and goals. Resources available to the family include such factors as: household composition, age, sex, educational background, ethnicity, religion, occupa­tion' income, marital status, housing status, transportation available, and insurance policies; and persons involved, including family members, friends, and community groups available to the client and family. Past experience with the same or similar situation includes such factors as: past crisis experi­enced by the family; decision-making patterns employed during the crisis; and finally, individuals identified by the family as ones who can be 'counted on' in time of crisis. Summary Appropriate to this study was an eclectic approach for forming a theoretical framework by using the works of Aguilera, Caplan, Olson, arrl Hill and Hanson to explore the needs of the spouse caring for the terminally ill at home. The concept of stress and crisis prcduced by family illness prevails in all four works. Caplan stated danger of losing a mate in addi­tion to role change prcduces stress which may percipitate crisis. Olson believed illness in a family produces disequilibrium, and therefore crisis develops. Closely related is the Aguilera model, except according to Aguilera, crisis can be prevented if enough needs or balancing factors are met. Finally, Hill and Hanson identified factors which influence a family's ability to cope and thereby prevent crisis when illness is in the fa mily . Objective The purpose of this study was to identify the spouse's unique needs while taking care of a terminally ill patient at home, and to what degree the needs were met. Research Questions 10 1. What are the needs of the spouse who is providing primary care to a dying mate at home? 2. Are some of the identified needs unmet or partially unmet, as per­ceived by the spouse? 3. Will spouses classified in different categories have different expressed needs? 4. Will spouses classified in different categories have different degrees of unmet needs? Operational Definitions of Terms Terminally ill was a person who met the following criteria: (1) was identified as such by the attending physician on the transfer form sent to the Douglas -Grant County Nursing Service when the person was sent home from the hospital; (2) was home for maintenance treatment only; (3) death was an expected event by the patient and spouse; (4) was at least forty years of age or older. Chil9.ren and young adults were excluded because it has been 11 shown that the reaction to a young versus older person f s death is different (Fulton & Fulton, 1971). This difference in reaction occurred whether the respondent was a man or woman, young, middle age or elderly, Black, Mexi­can American, Japanese American or Anglo American (Kalish & Reynolds, 1976) . Spouse was the person legally married to the terminal patient and gave the majority of care to that patient. Care at home was when the terminally ill person was cared for at home by the spouse for a minimum of four weeks. A need expressed by the spouse was a requirement of the spouse, which, if fulfilled, relieved or reduced the immediate distress or improved the sense of adequacy or well being (Orlando, 1961). Obviously, the needs expressed by the spouse could be endless. Therefore, this study concentrated on five major categories of need: (1) knowledge of physical care; (2) need for outside support, that is, anyone outside of self and spouse; (3) access to someone with whom the spouse could talk about the impending death and the sequela; (5) own per­sonal needs. The degree of needs being met was a percentage scale ranging from 100% to 0%. As sumptions The following assumptions were made. The respondents were frank and honest when describing the needs. The needs of the spouse or care giver 12 were different at home than in the hospital or nursing home setting. Relation­ships between the care giver and the ill family member was such that the death was perceived as a significant loss by the surviving care giver. When a family member was dying, the family and care giver were placed in a crisis. New roles, behaviors, and coping mechanisms were required. The dying patient was at home because the patient or the family care giver wanted the horne care situation, either because of emotional or financial reasons. CHAPTER III METHODS AND RESEARCH DESIGN Method of Study The method was inductive. It was based on Glaser and Strauss' grounded theory, which is the generation of theory from experience and data collection. The researcher, who has worked with people taking care of their dying spouses at home, has noted certain unique needs expressed by the care givers. Some of the needs were met; some were not. The literature review also indicated certain needs families encounter while taking care of a dying person at home. Therefore, the importance for a study to assess the needs of the spouse, and to what degree the needs were met while taking care of the dying patient at home was undertaken. Design of the Study The design was exploratory and descriptive. The study was an attempt to identify the needs of the spouse while giving home care to the terminally ill and how well the needs were met. A questionnaire delivered in person by the investigator was employed and data pertinent to the research questions col­lected. The study was an ex' post facto investigation for the following reasons: 1. During the care of the terminally ill, the care giver may have narrow perception of his/her needs because of total involvement with the patient. 14 2. Because of feelings of gUilt and anxiety, the care giver may neglect his/her needs. 3. The spouse may not wish to admit his/her needs because of fears of affecting present health care or the relationship with the ill person. Study Population The study population was all families who were referred to the Douglas and Grant County Nurs ing Service within the last 18 months. The familie s consisted of a spouse taking care of the terminally ill husband or wife at home for a minimum of four weeks. Referrals to the County Nursing Service were mostly from physicians, but also were initiated by nurses, social services, friends, or the family. To ensure a large enough sample size, every family who was referred to the agency and met the criteria for the study was asked to participate. The population was from a two county rural area of the State of Minnesota. Total population of the two counties is approximately 28, 000. Since the participants in this study were from a rural area of Minnesota, a unique population was assessed. While generalization of the results to another state or county was not possible, a comprehensive analysis could be accom'" pUshed for Douglas -Grant County. 15 Criteria for Inclusion To be considered for this study, the spouse: 1. Met the operational definitions of a spouse. 2. Was a member of a family who was referred to the Douglas-Grant County Nursing Service. 3. Must have taken care of a terminally ill person who met the opera tional definition of terminally ill. 4. Must have been considered physically and mentally able to complete the questionnaire. The County Nursing Service determined if the surviving spouse was unfit for the study and did not forward the name and address to the researcher. 5. Must have agreed to participate as a subject and signed a consent form. The rationale for including all spouses taking care of a terminally ill patient at home during an 18 month period in Douglas and Grant County was to assure enough questionnaire returns for a sample of sufficient size for adequate analysis. The rationale for excluding spouses who were no longer able to function well, physically or mentally, was to decrease the chance of unreliable data from that group. The target sample size was 30. Instrument The instrument used in this study was a questionnaire designed by 16 the investigator (see Appendix B). The questionnaire dealt with five major categories of need. Each category was further specified by six to eight state­ments. The five categories of needs were developed through the researcher's experience as a Public Health Nurse and the review of the literature, and are as follows: 1. Knowledge of physical care. 2. Need for outside support, i. e., anyone outside of self or spouse. 3. Knowledge of patient's physical illness and progression. 4 _ Access to someone with whom the spouse could talk about the impending death and the sequela. 5. Own personal needs. The sp::>use responded to each item as yes or no. If the answer was yes, then the spouse rated the extent to which the need was met, 100% to 0%. The following statistics were used for analysis: frequency distribution, percentile ranks and standard deviation. To compare different groups in the sample population, Sl ch as male and female care givers, t-test, and analysis of variance were used to calculate whether significant dif,ferences existed between the mean scores for each group_ In addition, the respondent was asked five open ended questions (Appendix B). This gave the spouse an opportunity to add personal input which would otherwise not be obtained. The data in the final section were analyzed for common characteristics among the group_ The questionnaire was read for face validity and clarity by two nurse clinicians who were involved in the Salt Lake City out-patient Hospice pro­gram. It was also tested with two women from the Salt Lake Oty area who recently cared for dying husbands at home. This allowed for refining and clarification of necessary questions. Procedure The study was conducted during June, 1980. The names of spouses 17 who met the criteria for inclusion as subjects were obtained from the Douglas­Grant County Nursing Service. The investigator met with each spouse at his/her home. As an intro­duction, the general purpose of the investigation was reviewed. The consent form was signed and separated from the data collection instrument. Follow­ing the introduction, the questionnaire (Appendix B) and a 'self -addressed return envelope were given to the spouse. The spouse was asked to complete and return the questionnaire to the investigator within two weeks. The spouse was assured that participation was voluntary, and failure to mail the instru­ment back, or a decision to not answer some of the questions would not result in further contact from the researcher. CHAPTER IV DATA ANALYSIS AND FINDINGS Study Population A total of 30 spouses, who resided in Douglas or Grant County of Minnesota, met the criteria for inclusion in the study. All 30 contacted sub­jects agreed to participate. Questionnaire Return Within two weeks after contacting each subject, all the questionnaires except four were returned (87%). There was no attempt to contact the four spouses who failed to return the questionnaire. Statistics Most of the data were nominal. The descriptive analysis was accom­plished through frequency distributions, percentages, means, and standard deviations. The responses to the open -ended questions were analyzed by frequencies and percentages of common comments. The investigator used the Statistical Package for Social Service to compute the above. Also, inferential statistics were computed through Analysis of Variance" Pearson Correlation Coefficient, and t-tests. A scat­tergram of needs expressed compared to age was also completed. Data Analysis Date were analyzed under five subheadings: 1. Demographic information from the questionnaire. 2. Needs expressed by the spouse and the percentage of the needs met. 3. Home care satisfaction and why it was selected. 4. Comparing identified needs when separating spouses into cate-gories. 5. Responses to open -ended questions. Demographic Data Age, sex, requirement of 24-hour care, past experience of care 19 for a dying person at home, and number of hospitalizations spouse required three months before death were the demographic variables assessed from the questionnaire. The ages of the spouses contacted ranged from 42 years to 85 years (x = 65.8), with a mode of 72 years (n=3). Of the participating spouses, 20 were female (77%) and 6 were male (23%). All the participants were Cau-casiano All subjects, except one, had a dying mate that required 24 -hour 20 supervision (96%). It is not known how much supervision the one other mate required. Nine of the spouses (35%) had previous experience of carying for a dying patient at home, while 17 (65%) had no previous experience. The number of hospitalizations the dying mate required within the last three months before death ranged from 0 to 9 (x = 1.8) with a mode of 1 (n=9). Needs Expressed by the Spouse and the Percentage of Needs Met Thirty-five questions were used to assess the needs of the spouse while taking care of a dying mate at home. The spouse was instructed to state a yes or no for each need statement. The questions were further classified into five categories, with six to eight questions each. The five categories were: 1. K now ledge of physical care given to patient. 2. Knowledge of patient's physical illnes.s and progression. 3. Access to someone with whom the spouse could talk about the impending death and its sequela. 4. Need for outside support. 5. Own personal needs. Of the needs that were expressed, ranges of the degree the need was met plus the mean and standard deviation of the degree of unmet needs were calcula ted. In terms of knowledge of physical care (Table 1), it appears that these spouses felt fairly comfortable in this area. The greatest need in this 21 Table 1 Per Cent of Needs Expres sed and Met: Knowledge of Physical Care Degree Need Yes No Was Met Need Expres sed % (n) % (n) Range X S.D. 1. (Did you need) to know how to use certain special equipment? 61 (16) 38 (10) 0-100% 87.5% 30.3 2. (Did you need) to know how to care for your spouse without causing increased pain? 39 (10) 61 (16) 0-100% 72.5% 36.2 3. (Did you need) to be assured by others of the comfort of your spouse? 31 ( 8) 69 (18) 50-100% 90.6% 18.6 4. (Did you need) to know what type of food your spouse should or could eat? 46 (12) 54 (14) 50-100% 87.5% 16.9 5. (Did you need) to know how to give proper hygiene? 35 ( 9) 65 (17) 50-100% 88.9% 18.1 6. (Did you need) to know certain medical procedures i. e. catheter care? 58 (15) 42 (11) 0-100% 81.7 34.7 22 category was knowing how to use special equipment (61%). The degree to which this need was met was 87.5%. The least met need in this category was knowing how to care for the spouse without causing increased pain (met 72.5% of the time). The two most frequent needs in terms of knowledge of patient's physi­cal illness and progression (Table 2), were the need to be informed of spouse's physical condition (100%, met 88.7% of the time), and the need to be informed of spouse's diagnosis (85%, met 88. 7% of the time). The least met need was the need to be prepared for emotional or behavioral changes in the dying mate (met 60.9% of the time). The most frequently expressed need in terms of access to someone with whom the spouse could talk about the impending death and sequela (Table 3) was the need to talk to the spouse about the impending death (85%). This was also the second least met need (54.5% met). The least met need was knowing comfortable communication skills when talking to the spouse about death (48.4%). The need for outside support (Table 4) produced frequently expressed needs. Both the need to have someone to count on if a medical problem arose, and the need to get the physician's advice when warranted were rated as needs by all participants (100%). The degree they were both met were also high: 98% and 90%, respectively. The greatest unmet need was getting outside help with physical care for the spouse (69%). The need for more sleep (92%) and the need for religious counsel (88%) 23 Table 2 Per Cent of Needs Expressed and Met: Physical lliness and Progression Degree Need Yes No "Vas Met Need Expres sed % (n) % (n) Range -x S.D. 1. To be informed of your spouse f s diagnosis (the dis-ease) • 85 (22) 15 ( 4) 25-100% 88.7% 22.8 2. To be prepared and informed of what to expe ct from the disease. 58 (15) 42 (11) 25 -100% 80.0% 27.1 3. To know the prognosis. 65 (17) 35 ( 9) 25-100% 91.1% 24.9 4. To be informed of spouse's physical condition. 100 (26) o ( 0) 50-100% 94.2% 12.9 5. To be prepared psycho-logically for im-pending death. 73 (19) 27 ( 7) 25 -100% 78.9% 26.7 6. To be prepared for emotional or beha-vioral change in your spouse due to the ill-ness. 61 (16) 39 (10) 0-100% 60.9% 39.8 24 Table 3 Per Cent of Needs Expressed and. Met: Access to Someone with Whom Spouse Could Talk Degree Need Yes No 'Vas Met Need Expressed % (n) % (n) Range x S.D. 1. To talk to spouse about the impending death. 85 (22) 15 ( 4) 0-100% 54.5% 40.6 2. To talk to spouse about funeral plans. 50 (13) 50 (13) 0-100% 67.3% 44.6 3. To talk to spouse about future actions to be taken. 65 (17) 35 ( 9) 0-100% 69.1% 38.0 4. To set up a will or other legal matters. 15 ( 4) 85 (22) 50-100% 87.0% 25.0 5. To talk to other family members about the impending death. 65 (17) 35 ( 9) 25-100% 86.8% 23.6 6. To talk to close friends about the impending death. 65 (17) 35 ( 9) 25-100% 77.9% 26.3 7. To know comfortable communication skills when talking to spouse about death. 61 (16) 39 (10) 0-100% 48.4% 32.2 25 Table 4 Per Cent of Needs Expressed and Met: Need for Outside Support Degree Need Yes No Was Met Need Expres sed % (n) % (n) Range x S.D. 1. Comfort and support from family members. 92 (24) 8 ( 2) 25-100% 84.4 28.4 2. Comfort and support from friends. 88 (23) 12 ( 3) 25-100% 84.8 28.9 3. Comfort and support from health profes-sionals 93 (24) 8 ( 2) 0-100% 84.4 25.5 4. "Someone to count on" if a medical problem developed. 100 (26) o ( 0) 75-100% 98.1 6.8 5. Someone to "patient sit" while doing out-side errands or just to get away for a while. 85 (22) 15 ( 4) 25 -100% 76.1 30.4 6. Assurance from others that you were doing a "good job. " 61 (16) 39 (10) 50-100% 89.1 15.7 7. Doctor t s advice when warranted. 100 (26) a ( 0) 25 -100% 90.4 22.4 8. Get outside help with physical care for spouse. 65 (17) 35 ( 9) 0-100% 67.1 38.0 26 were the most frequently expressed needs in the category your own needs (Table 5). However, the degree to which they were met varied greatly. The need for religious counsel was met 96.7%, and the need for more sleep was met only 51% of the time. There were four needs in this category that were met less than 58% of the time. They were: the need to get out (52%), needed time for self alone (57 .5%), the need to eat better (55.8%) and the need for more sleep (51 %). Home Care Satisfaction and Why It Was Selected The subject had three choices when asked how satisfactory the experi-ence of caring for the spouse at home was: Fifteen (58%) selected "better than expected n; 9 (35%) selected "about what was expected" ; and 2 (8%) selected "worse than expected." When asked if they would take care of a dying spouse at home again, 23 (88%) selected yes and 3 (12%) selected no. When choosing why the care giver selected home care, 2 (8%) stated financial reasons, 18 (69%) stated personal desire, and 6 (23%) chose both. Comparing Identified Needs When Spouses Were Separated into Categories A scattergram of the number of needs expressed by spouses according to their age was tabulated. Age ranged from 42 years to 85. The number of expressed needs ranged from 14 to 33 (Table 6). The scattergram depicts an interesting finding: Until the age of 65 years, it was fairly predictable that the number of expressed needs of the 27 Table 5 Per Cent of Needs Expressed and. Met: Own Needs Degree Need Was Met Need Expressed % (n) % (n) Range x S.D. 1. To get out, get away. 73 (19) 27 ( 7) 25-100% 52.0 31.1 2. Time for self. 77 (20) 23 ( 6) 0-100% 57.5 32.5 3. To eat better. 50 (13) 50 (13) 25 .. 100% 55.8 20.8 4, To get more sleep. 92 (24) 8 ( 2) 0-100% 51.0 25.0 5. To "talk it all out" with someone. 69 (18) 31 ( 8) 0-100% 63.0 36.5 6. To know what agencies were available to help. 69 (18) 31 ( 8) 50-100% 94.0 30.6 7. To know how to get the agencies to assist. 23 ( 6) 77 (20) 25-100% 96.7 8.6 8. A need for religious counsel. 88 (23) 12 ( 3) 75-100% 96.7 8.6 28 Table 6 Number of Expressed Needs Compared to Age . 9ll 85 xl I 80 x x I x 75 I x xI x x x x 70 I $-I xI x (]J ..>... x I x CD x ~ 65 x qS x u X 4-i 0 ~60 x x -< xI x 55 XI x x 50 x 45 XI J 40 I 35 I 10 15 20 23.5 25 30 35 (grand mean) Number of expressed needs spouse was quite consistent and close to the total mean (23.5). After the age of 65, the care giver's number of needs was not as predictable. Five had 27 or more needs, yet three had le.ss than 20 expressed needs. 29 Total needs compared to different spouse categories (male, female, previous experience of caring for a dying person at home, how well caring for the spouse at home went" would the care giver repeat the experience again, the reason for selecting home care, and the number of hospitalizations spouse required three months before death) were analyzed (Table 7). Analysis of variance was also calculated on this group (Table 8). When comparing different spouse groups and their total expressed needs, there are no obvious differences (Table 7). It is of interest to note that spouses who were the least satisfied with caring for the spouse at home actually had less expressed needs than the ones who stated the experience was better than expected (21.5 vs. 23.5). This is also true for the spouses who said they would not do the experience over again compared to ones that would (21.3 to 23.9). While it shows that males report slightly fewer needs than females, and spouses with previous experience report less needs than ones that haven't, there is no significance when comparing any group of spouses and their expressed needs when computing analysis of variance (Table 8). Finally J a Pearson correlation coefficient was calculated on the total number of expressed needs compared to the number of hospitalizations three months before death. The Pearson correlation coefficient illustrated a significant difference between the number of hospitalizations and increased A. B. C. D. E. F. G. Table 7 Total Number of Expressed Needs Compared to Different Spouse Groups Total population 23.5 (26) Sex: Female Male 23.6 23.2 (20) (6f Past experience of Yes No caring for a dying 21.6 24.5 person at home ( 9) (17) How well did caring Better About for spouse at home 23.5 23.8 go? (15) ( 9) Would you care for Yes No spouse at home 23.9 20.3 again? (23) (3) Why did you select Financial Personal home care? 23.0 Desire ( 2) 23.2 (18) How many hospitaliza- a 1 2 3 tions did spouse have 22.5 22.3 24.1 22.8 three months before ('4) ( 9) ( 7) (5) death? Total population: 26 Code: total mean of ex:eres sed needs (total number of spouses in the category) 30 Worse 21.5 ( 2) Both 24.3 ( 6) 9 33.0 ( 1) 31 Table 8 Total Number of Expressed Needs Compared to Different Spouse Groups Anal~sis of Variance Source of Sum of Mean Significance Variation Squares DF Squares F of F Main effects 101.0 7 14.4 .71 .66 Sex 25.7 1 25.7 1.26 .28 How well caring for spouse at home went. 4.4 2 2.2 .11 .90 Would you care for spouse at home again? 23.1 1 23.1 1.14 .30 Why did you select home care? 11.4 . 2 5.7 .28 .76 Previous experience of caring for a dying person. 62.2 1 62.2 3.07 .10 Total 466.46 25 18.7 26 cases were processed o cases were missing 32 expressed needs of the care giver (p = .02, r = .41). Because the correlation was rather low, it is indicative of a trend, but is not predictive. The more hospitalization required before death, the more needs were expressed by the spouse. To assess as a group whether the care giver's needs differ when clas-sified in the five need categories, the following calculations were made: (1) The average per cent of expressed needs per category for all spouses was tabulated (Table 9). (2) t -tests were calculated to determine if the per cent of expressed needs from each need category varied with different spouse groups; male -female, previous experience of taking care of a dying person at home and if the spouse would care for the mate at home again. Leve I of significance was .05. Table 9 A verage Per Cent of Expres sed Needs in Each Category Using Total Population Need Category Knowledge of Physical Care Knowledge of Physical filness Access to Someone with \Vhom Spouse Could Talk Outside Support Own Needs Total Expressed Needs 70 115 105 178 140 Average Per Cent of Needs Expressed 44.9 73.7 57.6 85.6 67.3 33 The category of needs with the largest percentage of expression was: Need for Outside Support (85.6%). This was followed by Knowledge of Patient's Physical Illness and Progression (73.7%), Own Needs (67.3%), Access to Someone with Whom Spouse Could Talk (57.6%) and Knowledge of Physical Care (44.9%) • A t-test was computed to compare expressed needs by category for male and female (Table 10). In three of the five areas, males expressed more needs than females. However, even though males expressed more needs in some areas than females, there was no significance between the two. When comparing the needs by category of spouses who had taken care of a dying person at home to ones who had not, the spouses with experience had fewer needs in each category except Own Needs (Table 11). The category of Access to Someone with Whom the Spouse Could Talk showed significantly fewer needs for those who have had experience compared to ones who had no experience (E.~ .05). No other categories were significant. vVhen using the t-test to compare expressed needs by category to spouses who would or would not take care of their mate at home again, no significance was found between the two. However, the ones who wouldn't do it again had fewer expressed needs in each category except Knowledge of Physical Care (Table 12). It was then assessed whether the degree of unmet needs differed between spouses classified in different categories. The caregivers com­pared were: male-female, spouses who had previous experience in carying Table 10 Comparing the Per Cent of Expressed Needs by Category for Male - Female Number Mean Standard Variance Sex of Cases % Deviation Know ledge of Physical Care Male 20 .42 .32 Female 6 .53 .24 Knowledge of Physical Illness Male 20 .75 .21 Access to Someone with Whom to Talk Outside Help Own Needs Female Male Female Male Female Male Female 6 20 6 20 6 20 6 .69 .32 .58 .26 .60 .14 .86 .13 .86 .12 .70 1.6 .60 1.8 aprobability was determined by a two-tailed t test. 34 pa .48 .62 .88 .97 .22 Table 11 Comparing the Per Cent of Expressed Needs by Category of Spouses Who Have/Haven't Cared for a Dying Variance Knowledge of Physical Care Knowledge of Physical Illness Access to Some­one with Whom Groupa 1 2 1 2 to Talk 1 2 Outside Help 1 2 Own Needs 1 2 Person at Home Before Number of Mean Standard Cases % Deviation 9 .35 .29 17 - .50 .31 9 .68 .24 17 .76 .24 9 .46 .28 17 .65 .20 9 .80 .14 17 .88 .11 9 .71 .18 17 .66 .16 aGroup 1 have cared for a dying person at home before. Group 2 have not cared for a dying person at home before. pb .25 .43 .05 .18 - .52 35 bprobability was determined by a two -tailed t test. Level of significance e. ~ .05. - 36 Table 12 Comparing the Per Cent of Expressed Needs by Category of Spouses 'Who vVould/W ould Not Take Care of Their Mates Again at Home Number of Mean Standard b Variance Group a. Cases % Deviation E. Know ledge of Physical Care 1 23 .44 .30 .76 2 3 .50 .44 Knowledge of Physical Illness 1 23 .75 .22 .34 2 3 .61 .35 Acces s to Some-one with Whom 1 23 .61 .20 .47 to Talk 2 3 .38 .43 Outside Help 1 23 .87 .10 .50 2 3 .75 .25 Own Needs 1 23 .68 .16 .57 2 3 .62 .25 aGroup 1 would care for their mates at home again. Group 2 would not care for their mates at horne again. bprObability was determined by a two -tailed ~ test. for the dying at horne to those that had no experience, and caregivers who would do the experience over again to those that would not. 37 Although the difference is not significant, males had a more difficult time than females meeting their needs in terms of Knowledge of Physical Care and Knowledge of Physical Illness (Table 13). However, males in this study were able to meet the needs of Outside Support and Own Needs better than females. Interestingly, spouses with no previous experience were able to meet their needs better in every area except Knowledge of Physical Care (Table 14). Again, there is no significance between the two, but a trend is depicted. There were no significant differences between the spouse who would care for the dying at home again to the spouse who would not (Table 15). The spouse who would do it again had better met needs in every area except Know­ledge of Physical Illness. The s~ouse who would not do it again seemed to have particular difficulty meeting the needs. of Access to Someone with Whom to Talk (45.8% met). However, mainly because the comparing unit is so small (3), no significance was demonstrated. Responses to Open-ended Questions Upon completion of the questionnaire, each respondent had the oppor­tunity to add personal comments about their experiences as caregivers. There were five questions that the spouse could elect to answer. All were answered by most respondents, except for the first question. The following questions were asked, and were analyzed in the following order: 38 Table 13 Comparing the Degree Needs Were Met between Male and Female Caregivers Sex N -x a S.D. pb Knowledge of Physical Care Male 6 67.5% 37.5% .50 Female 20 80.5% 35.0% Knowledge of Physical Illness Male 6 73.1% 21.5% .20 Female 20 85.1% 18.5% Access to Someone with Whom to Talk Male 6 62.2% 35.0% • 78 Female 20 66.2% 30.0% Need of Outside Support Male 6 89.3% 10.4% .38 Female 20 83.8% 13.7% Own Needs Male 6 81.0% 14.0% .14 Female 20 67.5% 19.8% aThe average per cent the needs were met in this category. bprobability was determined by a two -tailed!.. test. 39 Table 14 Comparing the Degree Needs Were Met between Caregivers Who Had Experience Caring for the Dying at Home, to Those That Had No Experience Exp~rience or -a b No Experience N x S.D. E. Knowledge of Physical Care Experience 9 86.3% 32.5% .39 No experience 17 73.3% 37.5% Knowledge of Physical Illness Experience 9 82.6% 25.2% .96 No experience 17 82.2% 16.7% Acces s to Someone with Whom to Talk Experience 9 64.6% 42.5% .94 No experience 17 65.7% 23.7% Need of Outside Support Experience 9 78.6% 12.8% .07 No experience 17 88.5% 12.3% Own Needs Experience 9 66.5% 18.9% .44 No experience 17 72.7% 19.7% aThe average per cent the needs were met in this category. bprobability was determined by a two-tailed .E.. test. 40 Table 15 Comparing the Degree Need s Were Met between Care Givers Who Would Repeat the Experience to Those Who Would Not Repeat it or not N X a S.D. E.b Knowledge of Ph~sical Care Yes 23 79.7% 34.1% .46 No 3 63.0% 54.5% Knowledge of Phlsical Illness Yes 23 80.6% 20.1% .21 No 3 95.8% 7.2% Access to Someone with Whom to Talk Yes 23 67.8% 29.3% .25 No 3 45.8% 40.2% Need of Outside Support Yes 23 85.9% 12.8% .36 No 3 78.5% 15.8% Own Needs Yes 23 71.4% 19.0% .57 No 3 64.4% 25.8% aThe average per cent the needs were met in this category. bprobability was determined by a two -tailed t test. 41 1. Are there any other needs you may have had that you would like to mention? 2. What were your three biggest or most important needs while' taking care of your spouse? 3. For each need mentioned in question 2, please marl< the degree e.ach was met. 4. Who were your two most helpful aides, i. e. friend, clergy, physicians, nurse, other family members, etc.? 5. What did you gain from your experience? Spouses were asked to comment on any additional needs that they felt they had (Table 16). Because of the limited response (4), it is difficult to draw conclusions from this question. Table 16 Other Needs You May Have Had That You' Would Like to Mention Need Expre s sed Constant wondering how long it will last. A need for more friendliness from outsiders. Someone to help ease burden of financial worries. Needed a better method of telling spouse of terminally ill condition. Number 1 1 1 1 Per Cent 25 25 25 25 42 The most common need expressed when asked "What were three of your most important needs?" (Table 17) was "getting outside help with physical care, " 12 (48%). This need was met an average of 72.9%. Religious counsel, the need for better equipment for the spouse, and emo­tional support were the next three most common answers with a response of five each (25%). The only response that was completely unmet was relief from anxiety. One spouse felt this unmet need. Each spouse was asked: "yVho were your two most helpful aides?" (Table 18). The two most common replies were the County Nurse, 16 (67%) and Minister or Priest, 9 (38%). Family members, 8 (33%) and children, 7 (29%) followed. The final question was: "What did you as the caregiver gain from the experience of caring for your spouse at home?" (Table 19). The most common answer was "self-gratification." Thirteen spouses (50%) responded with this. The second highest (27%) was a feeling of "I'm stronger than I thought I was. It ECCLES HEALTH SCIENCES lu ~< Table 17 The Three Biggest or Most Important Needs While Taking Care of Spouse and Degree They vVere Met 43 Mean Per Cent Need Expres sed N Per Cent It Was Met Getting outside help with physical care 12 48 80 Religious counsel 5 20 100 Better equipment for spouse 5 20 65 Emotional support 5 20 65 Need for sleep 3 12 33 Help from family 3 12 100 Help so can leave temporarily 3 12 42 Outside help with housework 2 8 63 Need to prevent loneliness 2 8 50 Help from County Nurse 2 8 100 Friendship while having sick at home 2 8 88 Doctor's advice 2 8 75 Instructions of giving home care 2 8 75 To give my best possible care 1 4 100 To be with my spouse 1 4 100 To have help with medical emergencies 1 4 100 Ability to continue own job 1 4 100 Someone to talk with 1 4 50 Help with decision making 1 4 50 Need to be stronger 1 4 50 Outside help with disease cost 1 4 50 Understanding own feelings while caring 1 4 50 Help in explaining to the children 1 4 50 Support from health care team 1 4 50 Relief from anxiety 1 4 a Having a good hobby 1 4 100 N = 25 44 Table 18 The Most.Helpful Aides Aide N Per Cent County Nurse 16 67 Minister-Priest 9 38 Family Members 8 33 Children (specified) 7 29 Friend 5 21 Physician 3 12 Hired farm hand 1 4 Social Worker 1 4 Table 19 Personal Gain from the Experience of Caring for Spouse at Home Gained N Self gratifica tion 13 1'm stronger than I thought 7 Increase knowledge of self 5 Increase Patience 3 Compassion 2 I'm closer to my religion 1 A contented feeling within self 1 Decreased gUilt about death of spouse 1 Increased confidence in self 1 Pleasure of being closer to spouse 1 Learned value of other people - -friendship 1 I'm no longer afraid of death 1 Knowledge of self-sacrifice 1 Increased awareness of problems the ill face 1 Increased knowledge of services offered to the tax payer 1 Experience prompted me to enter nursing school within one year after spouse's death 1 45 Per Cent 50 27 19 12 8 4 4 4 4 4 4 4 4 4 4 4 CHAPTER V DISCUSSION Purpose of Study The purpose of this study was to identify the spouse's unique needs while taking care of a terminally ill mate at home and to what degree these needs were met. The specific research questions were: 1. What are the needs of the spouse who is providing primary care to a dying mate at home? 2. Are some of the identified needs unmet or partially unmet, as per­ceived by the spouse? 3. Do spouses classified in different categories have different expressed needs? 4. Do spouses classified in different categories have different degrees of unmet needs? A review of demographic data, a discussion related to the four re­search questions, and findings from the personal comments follow. Discussion Demographic Data The ages of the spouses contacted for the study varied from 42 years 47 to 85 years (x = 65.8). The most frequently occurring age was 72 years (n=3). Of the participating spouses, 20 were female (77%) and six were male (23%). All spouses, except one, had a dying mate at home that required 24- hour supervision (96%). Nine of the spouses (35%) had experience of caring for a dying person at home, while 17 (65%) had no previous experience. The number of hospitalizations the dying mate required within the last three months before death ranged from 0 to 9 (x = 1.8). The most frequently occurring number of hospitalizations was 1 (9 subjects). Needs Expressed by the Spouse and the Percentage the Needs Were Met Responses from the spouses who participated in this study indicated that they do have identified needs while caring for their dying mates at home. Also, some of these identified needs were unmet, or partially unmet, as perceived by the spouse. The most frequently expressed need in the category of knowledge of physical care was knowing how to use special equipment. This supports Gray's (1977) experience as a primary care giver for her terminally ill mother at home. The need least met in this category was knowing how to care for the spouse without causing increased pain. The two most frequently expressed needs in knowledge of patient's illness and progression were the need to be informed of spouse's physical condition and the need to be informed of spouse's diagnosis. These tvlo needs are included in Hampe's (1975) findings when identifying needs of the spouse 48 when the terminally ill mate is in the hospital. The least met need was being prepared for emotional or behavioral changes in the dying mate. Kubler -Ross (1969) and Adams (1977) also stated that unexpected behavior of the dying patient may emotionally hurt the family or care giver. The most frequently expressed need relating to access to someone with whom the spouse could talk about the impending death and sequela was the need to talk to tbe spouse about the impending death. This need was also the second least met need. The least met need was knowing comfortable communication skills when talking to their spouses about death. This supports Crayton's (1979) experience as a daughter who still has regrets for not being able to talk honestly or openly with her dying mother about death. The need for outside support produced many frequently expressed needs. All participants expressed the need of having someone to count on if a medical problem arose and the need to get the physician's advice when war­ranted. Hinne (1979) cited the above two needs as part of his requirements for successful home care. The least met need was getting outside help with physical care for the ill mate. This lack of situational support can lead to further crisis as depicted in Aquilera's paradigm of crisis development (1970) • The category relating to the personal needs of the care giver pro­duced the greatest degree of unmet needs than any other category. There were four needs in this area that were met less than 58% of the time. They were: the need to get out (52%), need for time to be alone (57.5%), the need 49 to eat better (55.8%),. and the need for more sleep (51%). Lack (1979) also cited the importance of the care giver having time to be alone. Too often, the care giver gives up all personal needs to devote more time to the ill mate. Home Care Satisfaction and. Why It Is Selected The subjects had three choices when asked about the personal satisfac-tion experienced in caring for the spouse at home. The majority (58%) selected "better than expected, It 35% selected "about what they expected, " and 8% se lected "worse than expected." When asked if they would take care of a dying spouse at home again, the majority chose yes (88%) and 12% selected no. When choosing why the care giver selected home care, 8% stated financial reasons, 69% stated personal desire and 23% chose both. Comparing Different Spouse Categories and Needs When comparing age of the care giver and the number of expressed needs, the study indicated that as the care giver gets older; that is, beyorrl 65 years of age, it is less possible to predict the expressed needs of the care giver. The following spouse categories were compared within themselves to their total expressed needs: sex, previous experience, how satisfactory the caring for spouse at home was, would the spouse care for the dying mate at home again, and the reason for selecting home care. Although there was some variation within each group, there was no significance found by 50 computing analysis of variance or multiple classification. However, the ~earson correlation coefficient did illustrate that there is a significant dif­ference between the increased number of hospitalizations three months before death and increased expressed ~eeds. The more hospitalizations required before death, the more needs were expressed by the care giver. The average number of expressed needs in each category was com­pared. Outside support had the highest percentage of expressed needs. This finding correlates with the previous findings that outside support was the only category that had two needs that were rated as needs by all participants. The two needs rated 100% were having someone to count on if a medical problem arose, and the need to get physician's advice when warranted. These two findings support the statement by Aquilera (1970) that adequate situational health is crucial in crisis reduction. By using a t-test, expression of needs by category betw.een male and female were compared. The results were not significant, but did show a trend that males have more expressed needs in the area of knowledge of physical care, but fewer expressed needs in the area of own needs. The higher level of expressed needs in knowledge of physical care by males is possibly due to the fact that traditionally females, rather than males, take on the main responsibilities of caring for the sick at home when a family member is ill. Therefore, males lack experience in this area. Spouses who have had experience taking care of a dying person at home were compared to spouses with no previous experience. In every 51 category except own needs the care giver with experience had fewer expressed needs. In the category of access to someone with whom the spouse can talk, the spouse with experience had significantly fewer expressed needs. Perhaps previous experience of caring for and being around a dying person makes it easier for the spouse to talk to the ill mate about impending death. It is curious that spouses who have had past experience with the dying at home have more expressed needs under the category of own needs. Possibly through the self-sacrifice of previously taking care of a dying person at home they are more aware and willing to admit that they have many person needs, either met or unmet. Because of the small number of spouses who would not care for their mate at home again (n=3) compared to the ones that would, it was difficult to demonstrate any significance. Surprisingly, the t-test did show that in all categories except one, the spouses who would not do it again actually had fewer expressed needs. This trend could be explained in various ways. Perhaps these spouses have a low intolerance and despite having fewer expressed needs, had an experience they would never wish to repeat. Or, the spouses could be very stoic, independent individuals, who wish to "go it alone" without outside help. Because of this self-refusal in needing help, the experience of caring for the mate at home may be negative. By comparing male and female and the extent to which their needs were met, it was noted that males had fewer met needs in the area of knowledge of physical care and knowledge of physical illness. Again, this can be explained 52 by the fact that more females take care of the sick when there is an illness in the family. Conversely, there was a trend that the males in this study had better met needs with outside support and own needs. Although not significant, care givers with experience in caring for a dying person at home had better met needs under knowledge of physical care and physical illness. This is logical because of the care giver's past experi­ence with equipment, disease process, and so on. Surprisingly, the spouse with no experience was able to meet the needs of access to someone with whom to talk better than the spouse with experience. This was despite the fact that spouses with no experience recorded a significantly higher number of expressed needs in this area. Evidently J the spouse with no experience was able to get a great deal of support. There were no significant findings between the unmet needs of the spouse who would care for the dying at home again to the spouse who would not. Except for knowledge of physical illness, the spouse who would not do so again had fewer met needs in all areas, especially in the category of access to someone with whom to talk. Perhaps the lack of meeting their needs made the experience of caring for a dying mate at horrie a negative one. Responses to Open -ended Questions The most frequently expressed need when asked "\\That were your three biggest needs" was getting outside help with physical care (48%) and the average per cent it was met was 73. Religious counsel, the need for 53 better equipment for the spouse and emotional support were the next three most common answers with responses of 5 each (20%). All of these stated needs were met at least 65% of the time. Again, these five stated needs show a desire on the part of the care giver to have adequate situational support. When each spouse was asked "Who were your two most helpful aides?" the two most frequent answers were: county visiting nurse (67%) and minister­priest (38%). This response depicts the importance that care givers give to professionals in the helping fields. Perhaps the spouses perceive them as such helpful aides because of the guidance, support, and direction they are able to give. vVhereas the children (chosen 29%) and family (chosen 33%) may give much moral support, the guidance and direction nurses and clergy can give as professionals is perceived to the care giver as more "helpful." When asked "What did you gain from the experience of caring for your spouse at home?", 50% responded with "self-gratification" and 27% with "I'm stronger than I thought." These are both very positive feelings toward self and the experience. This positive attitude is also reflected in the finding that 88% of the participants studied would care for their spouses at home again if needed. CHAPTER VI SUM:rvIARY AND IMPLICATIONS Summary Rationale and Objective The purpose of the study was to identify the spouse's unique needs while taking care of a terminally ill patient at home and to what degree the needs were met. With the knowledge of identifying the unique needs, nurses and other helping professionals can provide anticipatory guidance to the care giver, thereby promoting successful home care for the terminally ill. The four research questions arising from the objectives were: 1. What are the needs of the spouse who is providing primary care to a dying mate at home? 2. Are some of the identified needs unmet or partially unmetl as perceived by the spouse? 3. Will spouses classified in different categories have different expressed needs? 4. Will spouses classified in different categories have different degrees of unrnet needs? 55 Sample and Methodology Thirty spouses who had cared for their dying spouses at home within the last 18 months were contacted personally by the researcher. This sample population was obtained through the Douglas and Grant County Nursing Service, which is an agency that serves two rural counties in Minnesota. The care­givers had been visited by this agency when they were caring for their dying mates at home. Out of the 30 spouses contacted, 26 responded (87% return). The tool used to assess the needs of the spouse was a questionnaire designed by the investigator. The items in the questionnaire were developed through the researcher's experience as a public health nurse and the review of the literature. The researcher was able to use the following descriptive statistics: frequency distribution, percentile ranks, means and standard deviati ons. Inferential statistics were use9 to compare different spouse groups and. their expressed needs. ANOVA, Pearson correlation coefficients, and t-tests were used to calculate if significant differences existed between them. Clinically Significant Findings The study indicated that spouses who care for terminally ill mates at home have many met and. unmet needs. The most frequently expressed and unmet needs were in communications about death with the dying mate, desire for outside support with physical care and the neglect of the care­giver's own needs. 56 When comparing different spouse groups and their frequency of expressed needs, there was a significant difference between the spouses who had no previous experience in caring for the dying and the ones that had, and the increased need of talking to the dying mate and others about the impending death. Also, although not significant, males had more needs and fewer met needs in the area of knowledge of physical care and knowledge of physical illness. Each caregiver was asked "Who were your two most helpful aides?" The two most frequent responses were the County Nurse (67%) and Minister/ Priest (38%). This response depicts the importance that caregivers give to professionals in the helping fields. Despite the fact that each spouse expressed many needs, met or unmet, 88% of them stated they would care for their dying mates at home again if they had the choice. The spouses also seemed to gain personally by the experience. This was exemplified when asked "What did you gain from the experience?" Fifty per cent responded with "self gratification" and 27% with "I'm stronger than I thought. " Limitations The study was conducted with a relatively small sample from rural Minnesota (n=26). Therefore, tf1.e results can only be applied ~o this situation and area. One implication for further research would be to repeat the study with a larger sample. This would allow for more reliable statistical analysis. It would also be beneficial to study both rural and urban populations and compare the two. 57 A more extensive questionnaire may be helpful. For example, knowing if the children lived close by or not may be instrumental in pre­dicting successful home care. Also, knowing how physically fit the caregiver was during the time the dying spouse was at home may have been useful. Finally, when the caregiver was asked "Who was your most helpful aide?", the response of "Nurse It may not have been so high if the researcher, who was identified as a nurse, hadn't personally met with each caregiver before distributing the questionnaire. To alleviate this possibility of situ­ational bias, a "neutral" person could distribute the questionnaire. Implications for Nursing Taking care of a dying mate at home is a very stressful event. With this comes great potential for unsuccessful home care. By identifying common needs of the caregiver and how well they are met, nursing can give anticipatory guidance and directed intervention. This will help reduce stress and promote successful home care. The findings of this study show that spouses who care for their terminally ill mates at home have unique needs; some met, some not. The most frequently expressed and unmet needs are in communication about death with the dying mate, a desire for outside support with physical cares and advice, and the neglect of the caregiver's own needs. In addition, male 58 caregivers have difficulty with knowledge of physical care techniques and caregivers with no previous experience have difficulty approaching the topic of death. It is also important to note that spouses who care for their dying mate at home have a strong commitment to accomplish this goal and participate in a growing experience for themselves. This is exemplified in the fact that despite all the needs, met or unmet, that each spouse expressed, 88% of all spouses would take care of their mates at home again if they had to do it all over again. Also, the personal comments about what they gained from the experience were all very positive statements about themselves. Nursing from all fields can help the spouse in these areas. The hos­pital nurse can be instrumental with patient-family teaching and discharge planning. The visiting nurse can add gUidance, counseling, perform physical cares, and assess the caregiver's special needs. The nurse practitioner, if in a clinic or out -patient area, can help with physical and emotional assessment of patient and caregiver, offer support, and follow-up with home visits, if needed. It is shown by this study, that most frequently, the caregiver s selected the visiting home nurse as the most helpful aide to them. This puts the nurse in a powerful and important role. With well-directed intervention, the nurse can be instrumental in promoting successful home care. APPENDIX A COV.ER LETTER 60 Dear ---------------------- You have been chosen to participate in a study to identify needs you may have had while taking care of your spouse at home. Your name was obtained from the Douglas-Grant County Nursing Service because you were visited by the agency during the illness of your spouse. My relationship to this agency is that I was a public health nurse for them from 1976 to 1979. Toda y, and in the past, many families have cared for dying people in their homes, some with much difficulty, some without. The study will help identify some needs the spouse may have had during the period of taking care of the ill family member at home. Hopefully, by identifying common needs expressed by you and others in this study, agencies, such as the County Nursing Service, can better help families take care of ill family members at home. Please read the consent form, sign if you wish to participate, com­plete the questionnaire and return it in the enclosed stamped, addressed envelope within the next two weeks. All information will be handled in a confidential manner and full anonymity will be maintained. The information you give may make it a little less difficult for families in the future to care for dying members at home. Sincerely, Thomas Loken APPENDIX B QUESTIONNAIRE FORM 62 What is your age? ----- What is your sex? M --- F Did your spouse require 24 hour supervision? YES NO --- Other than your spouse, have you ever cared for a dying person in the past at home? YES NO How many hospitalizations did your spouse have within the last 3 months before death? (Please estimate if not sure) ------ Be low are different needs you may have experienced while you were taking care of your spouse at home. After each statement, please mark "NO" if the need did not pertain to your situation and "YES" if it did. If you mark "YES", rate to what degree this need was met while taking care of your spouse at home. For example, in the following question, "Did you have a need for more sleep?", if you always had enough sleep, you will mark NO __ " If you needed more sleep and were unable to get the needed sleep about half of the time, you will mark YES and ------------------ 100 75 50 25 a Phvsical Care ( 1. Did you need to know how to use certain special equipment, i.e. bedpan, wheelchair, hospital bed, etc.? NO ---- YES ----, if yes, to what degree was it met?- -------------- 100 75 50 25 a 2. Did you need to know how to care for your spouse without causing in­creased pain, i. e. moving in bed, getting up from chair, etc.? NO ---YES -----..;, if yes, to what degree was it met?- ------- 100 75 50 25 0 63 3. Did you need to be assured by others of the comfort of your spouse? NO -- YES_--:, if yes, to what degree was it met? ______ _ 100 75 50 25 a 4-. Did you need to know what type of food your spouse should or could eat? NO __ YES -' if yes, to what degree was it met? _______ _ 100 75 50 25 a 5. Did you need to know how to give proper hygiene, i. e. giving a bed bath? NO _ YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 6. Did you need to know certain medical procedures, i.e. range of motion exercises, colostomy or catheter care, etc.? NO __ YES __ , if yes, to what degree was it met? _______ _ 100 75 50 25 a Physical Illness and Progression 1. Did you have a need to be ir.formed of your spouse's diagnosis (the disease)? NO __ YES __ , if yes, to what degree was it met? _______ _ 100 75 50 25 a 2. Did you need to be prepared and informed of what to expect from the dis­ease, i.e. swollen legs, loss of appetite, etc.? ) NO YES -' if yes, to what degree was it met? ________ _ 100 75 50 25 a 3. Did you need to know the prognosis (likelihood of survival vs. death)? NO YES if yes, to what degree was it met? ________ _ 100 75 50 25 a 4. Did you need or want to be informed of spouse's physical condition, i.e. weight, blood pressure, blood values, hemoglobin, etc.? NO __ YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 5. Did you need to be prepared psychologically for impending death, i. e. death would soon occur? 64 NO __ YES __ , if yes, to what degree was it met? -1"""':"0"":""0-7--5-5--0-2-5-0- 6. Did you need to be prepared for emotional or behavioral changes in your spouse due to the illness? NO --YES --,if yes, to what degree was it met?- -------- 100 75 50 25 a Acces s to Someone with Whom the Spouse Can Talk 1. Did you have a need to talk to your spouse about the impending death? NO _ YES _, if yes, to what degree was it met? _______ _ 100 75 50 25 a 2. Did you have a need to talk to your spouse about funeral plans? NO __ YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 3. Did you have the need to talk to your spouse about future actions to be taken, i. e., sell the house, move in with children, etc.? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 0 4. Did you need to set up a will or other legal matters? NO __ YES-, if yes, to what degree was it met? ________ _ 100 75 50 25 O' 5. Did you need to talk to other family members about the impending death and its ramifications? NO __ YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 6. Did you need to talk to close friends about the impending death and its ramifications? NO YES __ , if yes, to what degree was it met? _______ _ 100 75 50 25 a 65 7. Did you need to know comfortable communication skills when talking to your spouse about death? NO __ YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a Need for Outside Support 1. Did you have a need for comfort and support from family members? NO __ YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 2. Did you have a need for comfort and support from friends? NO __ YES _, if yes, to what degree was it met? ________ _ 100 75 50 25 a 3. Did you have a need for comfort and support from health professionals, i.e. physicians, nurses, etc.? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 4. Did you have a need to have "someone to count on" if a medical problem came up, i.e. increased temperature, plugged foley catheter, etc.? NO YES if yes, to what degree was it met? ________ _ 100 75 50 25 a 5. Did you have a need to have someone "patient sitt! while you did outside errands or to just get awa.y for a while? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 6. Did you need assurance from others that "you were doing a good job"? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 7. Did you have a need to get the doctor's advice when warranted? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 66 8. Did you have a need to get outside help with physical cares for your spouse, i. e. to prevent injury to yourself? NO __ YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a Your Own Needs 1. Did you have a need to get out, get away? NO _ YES __ , if yes, to what degree was it met? ________ _ 100 75- 50 25 a 2. Did you need time for yourself, to read a book, watch TV, get a haircut, etc. ? NO YES _, if yes, to what degree was it met? ________ _ 100 75 50 25 a 3. Did you have the need to eat better? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 4. Did you have a need to get more sleep? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 5. Did you have the need to "talk it all out" with someone? NO YES if yes, to what degree was it met? ________ _ 100 75 50 25 a 6. Did you need to know what agencies were available to help you, i. e. American Cancer Society, Social Services, County Nursing, etc.? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 7. Did you need to know how to get the agencies to assist you, i. e. did you lack the "know how or power" to get the agencies to help? NO YES __ , if yes, to what degree was it met? ________ _ 100 75 50 25 a 67 8. Did you have a need for religious counsel? NO __ YES -' if yes, to what degree was it met? ________ _ 100 75 50 25 a Please Fill in the Next Few Questions 1. Is there any other needs you may have had that you td like to mention? 2. What were your three biggest or most important needs while taking care of your s pous e? 1. 2. 3. 3. For each need mentioned above, please mark the degree they were met. need #1. --10-0- --75- --5-0- -2-5 --a- -- need #2. --10-0- --75- --5-0- -2-5 --a- -- need #3. 100 75 50 25 0 4. Who were your two most helpful aides, i.e. friend, clergy, physician, nurse, other family member, etc.? 1. 2. 5. How well did the experience of caring for your spouse at home go? ---better than expect ed ----about what I expected ---worse than I had expected 6. Would you take care of a dying spouse at home again? YES NO 7. Why did you select home care for your spouse? ---financial ---personal desire ---both 68 other, please specify, ------- ----------------------------------- 8. What did you gain from the experience of caring for your spouse at home? THANK YOU! REFERENCES 70 Adams, R. The bereaved--to-be: His tasks--his reactions--his needs. In E. Gerchick & D. Huttunen (Eds.), The role of the community hospital ill the care of the dying patient and the bereaved. New York: Arno Press, 1977. Aguilera, D., Messick, J., & Farrel, M. Crisis intervention. St. Louis: C. V. Mosby Co., 1970. Aries, P. Western attitudes toward death: From the middle ages to the pre­~ Baltimore: The Johns Hopkins University Press, 1974. Caplan, G. Emotional crisis. In A. Deutch (Ed.), The encyclopedia of mental health 2. 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