Vulnerability of family caregivers in terminal palliative care at home ...

ORIGINAL ARTICLE

Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity Ireen M. Proot1,2 PhD, MSc (Health Scientist, Occupational Therapist), Huda Huijer Abu-Saad1 PhD (Professor of 3 4 Nursing Science), Harry F.J.M. Crebolder PhD (Professor of General Practice), Minke Goldsteen MSc (Culture 5 4 Scientist), Karen A. Luker PhD (Professor of Community Nursing) and Guy A.M. Widdershoven PhD (Professor of Ethics) 1

Centre for Nursing Research, Maastricht University (UM), 2Institute for Bioethics, UM, 3Department of General Practice, UM, 4Department of Health Ethics and Philosophy, UM, Maastricht, The Netherlands and 5School of Nursing Midwifery and Health Visiting, University of Manchester, Manchester, UK

Scand J Caring Sci; 2003; 17; 113–121 Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity This paper reports on a grounded theory interview-based study with 13 family members aged 28–80 years caring for terminally ill people at home (with a life expectancy of 3 months or less) in the Netherlands. The project was approved by the ethics committee of the Maastricht University Hospital. The aim of this study was to explore the experiences of family caregivers, their needs for home care, and which health services they receive. Data were analysed using the constant comparative method. ‘Vulnerability’ was identified as the core category. Caring for a terminally ill person at home requires continuous balancing between care burden and capacity to cope. Whether or not the carer will succeed in keeping in optimum balance is dependent on a number of factors impinging on the caregiver’s vulnerability. Care burden, restricted activities,

fear, insecurity, loneliness, facing death, lack of emotional, practical and information-related support were identified from the data as factors having the potential to increase the caregiver’s vulnerability, and may be risk factors for fatigue and burnout. Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the caregiver’s vulnerability, and may protect against fatigue and burnout. The experiences of the caregivers in our study showed that the support from informal and professional caregivers was not sufficient. Education and practical tools may make professionals more sensitive for the vulnerable position of family caregivers, even when these caregivers do not show their vulnerability. Keywords: caregiver’s experiences, qualitative research, support by family caregivers, support by health providers, terminal palliative care. Submitted 4 July 2002, Accepted 19 March 2003

Correspondence to: Ireen Proot, Institute for Bioethics, P.O. Box 616, 6200 MD Maastricht, The Netherlands. E-mail: [email protected]

is no longer responsive to curative treatment’ (2). The definition puts emphasis on patient and family as a unit of care. This leads one to reflect on the needs and experiences of family caregivers and their views on home support services required. There is an increasing focus in the health policy literature on the role of patients and their families in care and treatment for long-term health problems. Indeed it is the case that most people who die at home are cared for by family members and friends with professional services playing only a supporting role. The care that terminally ill people receive in their own home has received some attention (3–5). There has also been some small studies which have explored the experiences of carers in managing terminal illness in the home (6, 7). In palliative care, the needs and experiences of family caregivers may change in the course of illness. For example, the experiences of

2003 Nordic College of Caring Sciences, Scand J Caring Sci

113

Introduction In the Netherlands about 32 000 patients with a non-acute illness die at home every year and these numbers are predicted to increase by 20% up until 2015 (1). Family caregivers provide an important part of the care needed in the terminal phase of illness which has been described as an integral part of palliative care. Palliative care in this context is ‘the active total care of patients and their families by a multiprofessional team when the patient’s disease

114

I. Proot et al.

family caregivers at the time the patient hears that he or she cannot be cured differ from the family caregiver’s experiences during the terminal phase of the illness when the burden of care is expected to be highest. Nijboer et al. (8) stressed that there is an urgent need to study cancer patients and their caregivers concerning the caregiving process. In particular, caregiving patterns over time require attention because the situation of caregivers changes when more care tasks are involved. Grbich et al. (7) identified the emotional experiences and coping strategies of informal carers of cancer patients in the different stages of caring and postbereavement. Detailed mapping of the needs and experiences of carers in the different phases is important to delineate the services to be provided. Several authors who reviewed the literature related to family caregivers of palliative patients with cancer concluded that literature on this topic is scarce and recommended studies into the caregiving process and families’ responses to terminal illness (8, 9). In this article, we report on a study of family caregivers taking care of terminally ill persons (with a life expectancy of 3 months or less) at home. The study is part of a large-scale research project on ‘A good death. Palliative care at home’. Patients, family caregivers (also bereaved carers), and professional caregivers participated in this project. This article explores the experiences of family caregivers caring of a terminally ill person at home with reference to needs for home care, and health services received.

Method A qualitative research method, grounded theory (10–12), was used to explore the needs and experiences of family members caring for a terminally ill person at home. An important goal of grounded theory is to understand the participants’ world as they perceive it. Grounded theory starts with the descriptions and perceptions of the respondents participating in the study, and not from concepts derived from the literature.

Setting and sample The data reported here were part of a larger study which encompassed interviews with patients (n ¼ 13), family caregivers caring at home for a terminally ill person (n ¼ 13), bereaved carers (n ¼ 14) and professional caregivers (n ¼ 13). The project was approved by the ethics committee of the Maastricht University Hospital (azM). The patients were selected by their own general practitioner (GP). Inclusion criteria were: expected to die within 3 months, living at home, being mentally competent and older than 18 years. Exclusion criteria were physical, psychosocial or other circumstances which would interfere with informed consent or study participation. Of note is

Table 1 Demographic characteristics of the family caregivers in terminal palliative care

Characteristics Relationship with patient partner daughter son Civil state unmarried married divorced Living arrangement with partner with partner and child(ren) with children Education level lower vocational or less intermediate vocational or general secondary higher vocational or university

n ¼ 13

9 3 1 1 11 1 8 4 1 4 6 3

the fact that all carers who participated in the study were looking after somebody with a cancer diagnosis, although this was not an inclusion criterion. If patients consented to the carer being approached for an interview, family caregivers were selected by the patients. One patient asked if two daughters could be invited for a double-interview. Between November 1999 and November 2000, a total of 14 family caregivers actually caring for a terminally ill person at home were invited to participate in the study. Thirteen caregivers consented, one caregiver said to have given all information during the patient interview. Two men and 11 women participated in the study, ranging in age between 28–80 years (M ¼ 51). Table 1 gives demographic characteristics, and relationship with the patient. All family caregivers were Dutch, and resided in the province of Limburg in the south of the Netherlands. Twelve family caregivers were Roman Catholic, one caregiver had no religion. It appeared that for 70% of the family caregivers the time between interview and death of the family member they were caring for was less than 3 months (M ¼ 11.7 weeks, range ¼ 0–35 weeks).

Data collection Interviews with experts (GPs, nurses, a bereaved carer), experiences from the study by Beaver et al. (13), and sensitizing concepts derived from literature were used to develop an open-ended interview guide. Topics encompassed the experiences, difficulties and needs of family carers, and the service provision and adequacy in addressing these difficulties and needs. The interview guide was 2003 Nordic College of Caring Sciences, Scand J Caring Sci

Family caregivers and terminal care reviewed by the project group members and selected experts, and accordingly revised. The use of the guide in the first interviews showed that it was suitable to the purpose in hand.

115

Vulnerability

Interview procedure The interviews were conducted by four trained interviewers (among them the first and fourth author). The interviews commenced with the things the respondent was involved with at the time of the interview. Interviews lasted from 40–120 minutes (M ¼ 77). In four interviews, the partner was present, in one interview a friend. Two daughters participated in a double-interview. Twelve interviews were tape-recorded (after consent) and transcribed with all identifying data removed. In addition, field notes were kept during and after each interview, and answers to questions concerning demographic variables were recorded. One respondent had not been asked for consent of tape-recording because of the fragile situation of the patient. In this case, extensive field notes had been made.

Continuing activitie shope keeping control satisfaction good support

Vulnerability decreasing factors

Care burden restricted activities fear insecurity loneliness facing death lack of support

Vulnerability increasing factors

Figure 1 Care category ‘vulnerability’ and increasing/decreasing factors.

received from informal and professional carers. In addition, difficulties and needs of family members are explored. The core category ‘vulnerability’ and a number of factors impinging on the caregiver’s vulnerability have been identified. These factors are described and illustrated by selected interview scenes (relationship with the patient and type of cancer are given between parentheses).

Data analysis

Vulnerability

Analysis of the first interviews began while the interviews were going on. The data were analysed using the constant comparative method as described in grounded theory (10) with the goal of concept development and beginning theory development. Interviews and field notes were coded. Codes were grouped, compared and categorized into concepts. Both descriptive coding and theoretical coding were used: descriptive coding to explore the experiences and needs, and theoretical coding to develop a theory in order to clarify relationships between concepts and to facilitate the development of a theoretical framework. After analysis of eight interviews, a preliminary theory has been developed. The remaining five interviews were used to validate this theory. Data triangulation and investigator triangulation (14) were used to broaden the analysis, and to try to obtain content validity as much as possible (11, 15). Respondents with varying socio-demographic variables participated in the study, and results of the family interviews were checked with 10 patient interviews, two interviews with bereaved carers, and four provider interviews (data triangulation). There were four interviewers who conducted interviews (investigator triangulation). In addition, other (senior) researchers were involved in the analysis and coding process (peer debriefing).

Family members caring for a terminally ill person at home find themselves in a situation with a number of mental and physical burdens, which may cause caregiver fatigue and eventual burnout. This situation may make family caregivers vulnerable, in the sense of being more at risk of fatigue and burnout, notwithstanding their courage and strength. Continuous balancing between care burden and capacity to cope is required, like balancing on a tightrope. The core category ‘vulnerability’ is illustrated by a number of factors increasing or decreasing vulnerability (see Fig. 1).

Results This section describes the experiences of family members caring for a terminal ill person, and the support they 2003 Nordic College of Caring Sciences, Scand J Caring Sci

Vulnerability increasing factors Care burden, restricted activities, fear, insecurity, loneliness, facing death and lack of support are factors which may increase the caregiver’s vulnerability.

Care burden Caring for a terminally ill beloved one involves both mental and physical burdens. But the biggest, the most burden sits here between my ears. (f06, partner; ca urinary bladder) I have had moments that I thought, damn, I can’t take it any longer, this is too much for me. The hospital visits, keeping the house neat and tidy, buying groceries, cooking, ironing, the whole kit and caboodle. (Interviewer: So, did you ask for help than?) No. I thought by myself, leave it, I’ll feel better about it

116

I. Proot et al. tomorrow, and then I managed to do all by myself again. (f05, partner; ca ovary)

Restricted activities For most family caregivers continuation of their own activities was impossible. Their normal activity patterns and habits were seriously restricted. I’m a lot more home now. [In the past] we went downtown or I went to the shopping centre, or ran errands with my mother. (Interviewer: Why not now anymore?) I don’t exactly know. Probably because I don’t want to leave him alone. I don’t like to leave him alone at home.(f06, partner; ca urinary bladder) Some caregivers experienced this situation as if they were ‘prisoners in their own home’: He [the patient] is [here], and I feel like a prisoner in my own home. (f01, partner; ca lung) Other caregivers might have different experiences, and may anticipate on the time coming, as in the following case of a woman caring for her dying husband in his last week: It doesn’t bother me. There will be other times. (…) I’ll do anything for him. (f03, partner; ca lung) If caregivers have their own family, as is the case in the following example of a daughter caring for her mother, they have to commute between own home, parental home and office: You’re there all the time [in the home of the patient]. (….) I went back to my job again, but only for half days. And when I get back [from my job], I go there right away. (f04a, daughter1; ca stomach)

Fear The idea that the beloved other will have a terrible, painful death is often present, and the fact that caregivers do not know when death will come, and in what form, may generate fear. Afraid of what is going to happen. How it will develop. On the one hand I think a little bit like, maybe she’ll be able to go for a bike ride this summer, but on the other hand I’m afraid she will have a lot of pain.(f04a, daughter1; ca stomach)

Insecurity Often there are ups and downs in the patient’s functioning (physical and mental), which is difficult for caregivers. When she is free of pain and she feels good, then I’m ok as well. Then I live again as I did before. Except that we, well, she is not able to walk as far and she tires easily. (f05, partner; ca ovary)

She is often unpredictable, she can be very nice and another time she’s pigheaded. Sometimes that’s difficult. But then you have to consider why that is, like do you mean that, or is it because your head is affected? (f02, daughter; ca brain) Insecurity about the patient’s functioning may mean that caregivers have no control over their own lives. How long do you still have, when the therapy ‘takes’, and to live day by day, that’s what I find very hard. You can’t plan anything (…). I’ve tried, but every time something comes in between. (f06, partner; ca urinary bladder) Insecurity about the patient’s dying wish, for example about the funeral, may increase the caregiver’s vulnerability, because the caregiver may be anxious to fail: He doesn’t talk about it [the funeral]. But maybe to the social worker later on. Because I worry that I didn’t do it right, that he may have wanted it different. And I think it is the last thing you can do for somebody. (f08, partner; ca colon)

Loneliness Caregivers protect patients from emotional distress which leaves caregivers themselves with problems. On the other hand, patients protect caregivers from emotional distress too. This means that in many cases the roles towards each other are changing, and that partnership decreases. The caregiver may feel alone, which may lead to an increase of one’s vulnerability. I don’t tell her everything. Not because I don’t dare to talk about it with her, but really because I think it doesn’t serve any purpose. I don’t want to bother her. She doesn’t need to know, she will only worry about it all. (f04b, daughter2; ca stomach) So what really keeps me busy is that he is not entirely honest with me. He says: ‘I’ll tell you when I have pain, I really will’ but he doesn’t. But he will tell… [name], who’s his friend, and to an older guy here, with whom he plays cards. He told him: ‘I don’t have long to live anymore, I know it, I don’t have a lot of time left.’ But to me he pretends to live forever. Meanwhile I know that that isn’t true, I can tell when I look at him. (f08, partner; ca colon) Decreasing partnership means that caregivers, particularly caregivers caring for their partner, are confronted with the fact that they have to search for other people to spend time together or to do things with, or to seek for emotional support. That there are not a lot of people who are really there for you. That’s what makes it more difficult, because you really have to do it all alone. (…) Often when you are having a really hard time, in the dark and lonely hours, you just can’t phone everybody. (f06, partner; ca urinary bladder) 2003 Nordic College of Caring Sciences, Scand J Caring Sci

Family caregivers and terminal care

Facing death Caring for a terminally ill person in the last weeks or months of life involves realizing that death is nearby including planning a final farewell. One has to face the fact that life will not be the same, and that life plans have to be adapted. And that I am going to lose him – one moment I think, what will be will be, and the next moment I can barely stand the thought. (f06, partner; ca urinary bladder) [Very emotional] The worst is that she [her mother] won’t be there when I might ever have a baby. (f04a, daughter1; ca stomach)

Lack of support Sometimes family caregivers experience a lack of support from the patient, for example, if patients do not clearly express their wishes, then carers are unsure about what they should provide: For myself I know that I am doing a good job. But that may stop quickly if he doesn’t talk to me. (f08, partner; ca colon) When patients are dissatisfied, or even recalcitrant, the caregiver experiences this as a lack of appreciation, and thereby as lack of support: I hate it when they [patients] are obstinate. With all that you do for them.(…) That they are not content. (f01, partner; ca lung) From the caregivers’ perspective, dependent behaviour on the part of the patient more than is needed, means a lack of support or appreciation: He says he can manage a bit, but he can’t do [does not do] a thing. He even calls for a glass of water. Really. And he also forgets to take his pills half the time. (f01, partner; ca lung) Some caregivers experience lack of support from family members or others, for example, if there is only attention paid to the patient, or if no one enquires about the problems of the caregiver: The day went by quickly. Visiting, and back again, do this and do that, watch out, and that went on day after day, week after week. And then they ask, how is… [patient]? But they didn’t ask how I was. (f05, partner; ca ovary) They [family] know about it but are somehow afraid to talk about it. When I say: ‘Boy, I’m so tired’ [they answer] ‘Yes, we can imagine.’ (f06, partner; ca urinary bladder) Lack of support from health providers is demonstrated when professional care and/or aids are not available, and continuity of care is not guaranteed, for example: On that day I went straight back to bed, that’s how sick I was, but that’s the problem then. You may get a home helper for that day. But you won’t get some one 2003 Nordic College of Caring Sciences, Scand J Caring Sci

117

for the whole day.(…) They come to assist her with AM care and they may return for the evening care, but during the day you can’t get anybody. (f08, partner; ca colon) Not all aids, prescribed medication or support needed were supplied by the patient’s insurance cover which may cause financial strain. She can walk, but not as far, that’s gone.(…) (Interviewer: What is it that you would want?) A car with a wheelchair. Later, after they die it goes back to them [home services].(…) The car [that I own] is nineteen years old. It still runs good but I can’t fit a wheelchair in it. (f05, partner; ca ovary) He [the patient] tells [the nurse] more when I am not around. He talks a lot then and so I asked to have a social worker come and visit, because, let well (…) I have to pay ten dollars an hour [for psychosocial support from the nurse]. That would be too costly if he was to talk with the nurses only. But I don’t have to pay for a social worker. (f08, partner; ca colon) There is a need for emotional support from health providers (GPs, home care nurses), but the approach is not always supportive from the caregiver’s point of view: I made a remark about it once, that I am so tired, that I can’t cope with all of it as well as before. And then he [GP] said something like ‘Well, but you’ll have to.’ (…) Then I thought, I’ll forgive you because you don’t know any better. You are just a man. (…) The only thing he will give me is sedatives, but that doesn’t help me. (f06, partner; ca urinary bladder) There is another GP there, a younger lady, and she visited once. I think she is afraid to come here again. She started with asking my mother: How long have they given you? Well, I don’t think that is very positive. She would talk you into a depression. (…) Our family doctor who normally always comes would say: ‘Oh, you are looking well today.’ And he talks like we will be alright for another while. Really as if he is part of the family.’ (f04a, daughter1; ca stomach) Family caregivers sometimes experience a lack of access to information because there are no opportunities to speak to providers alone, or because they think that they cannot ask information for themselves, and that providers only give information to the patient. (Interviewer: There is much she doesn’t want to talk about, right?) Yes, yes, that’s right.(…) You can never talk freely when a doctor is around. (…) Well, only when he [GP] is here in the kitchen, but when she is present I don’t ask anything, don’t say much, because he may want to answer my questions then. (f02, daughter; ca brain) She [patient] is under the impression that it [the pain] is caused from laying down, but I think it is caused by the cancer cells. That they, in one way or another, are present in the skin. And I can’t ask anyone which is

118

I. Proot et al.

too bad. I wouldn’t know whom to ask about it. Because the surgeon for instance would say to me: ‘But I need your mother’s permission to talk about it’. (f04b, daughter2; ca stomach) During hospital admissions of the patient they are caring for, caregivers often received too little information and emotional support. Not one doctor told me [anything], except in Intensive Care. All at once [they] say that it burst, that they hadn’t been able to cut it all out, you know then that something is wrong, and I said something like ‘How long do we have?’ ‘Well, at the most four to nine months’ he said ‘Those are the details I may give you.’ (f08, partner; ca colon)

Vulnerability decreasing factors Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the caregiver’s vulnerability (see Fig. 1).

But if I look ahead, I see a future without him; that is something I need to realistically deal with. To fill that void in a meaningful way (…) I think I would like to go back to work, I would like to care for my son in some way. (…) I think I’ll get a certain peace. (f06, partner; ca urinary bladder)

Keeping control By setting their own limits about what they will or would not do, some family caregivers try to keep control over their involvement in the care of the patient. Then the doctor said: ‘We would like to teach you how to give a shot [to inject]. You have to come to the clinic a couple of times, to see the assistants, and then you can do it yourself.’ I said no. I would be able to inject someone else if he got that bleed. [I said] ‘I am alone. I won’t do that. And I don’t want to learn to do it.’ And I didn’t do it. (f01, partner; ca lung)

Satisfaction Continuing previous activities Continuation of the caregiver’s own activities (work, hobbies) as much as possible is a means to keep up one’s own activity patterns, habits and social contacts and provides distraction. [That course is] entirely for myself. No one there will ask how my husband is, it is just for me only. And I’m looking forward to it. (f06, partner; ca urinary bladder) Last night I got together with the neighbours who live behind us, about four, five guys. Then … [patient] said: ‘Please go, it’s just you men, and soccer doesn’t interest me.’, and then she’ll relax and watch a good movie on TV. (f05, partner; ca ovary)

Hope Hope (in the sense of realistic hope; not hope for a cure) is important to reduce fear, for example hope that the beloved other will have a good, peaceful death, or that he or she will live a bit longer: The only thing I would be grateful for is that he would not have to suffer much pain, and just maybe one evening will fall asleep and not wake up.(…) That would be hard for me, to come downstairs and find him then. But I think that’s what he would want. (f08, partner; ca colon) Patients who are motivated to maintain an interest in life strengthen hope, by showing that they do not give up. In addition, hope regarding the future acknowledges that life will go on, for example, the following caregiver who anticipates on the future, being alone, but living a meaningful life, and free from the burden of care.

Satisfaction about the care they give to the patient, and a positive feeling about caring may decrease vulnerability. I am sure that what I did do now, I couldn’t have done in the hospital. I have done everything here. That gives peace of mind. (f03, partner; ca lung)

Good support Family members caring for a terminally ill person at home find themselves in a vulnerable situation. In the previous sections – experiences, needs and difficulties of family caregivers with regard to caring for a terminal ill patient, and with regard to the informal and professional care they receive themselves – have been described. This section discusses the content of the support given by informal and professional caregivers, and other sources of support. Both instrumental and emotional support were given by family members or others. They [the relatives] ask me all the time if they can do something for me, do the groceries, or help with the dishes. You know, those kind of things. And also really give support if I start saying things like, well, when he isn’t here anymore then it’s just me – my son gone, my husband gone. They help me then. And you feel you are not alone. (f08, partner; ca colon) With all of us together. So now, we are more alone, and I talk a bit more with my husband. But actually also with my father and mother, and with my sister – really with everybody.(…) It feels really strong, so together like this. (f04a, daughter1; ca stomach) I get a lot of support from my colleagues. They phone me regularly, they come and visit. They come in the 2003 Nordic College of Caring Sciences, Scand J Caring Sci

Family caregivers and terminal care first place to see my husband, they say. That makes sense. (f08, partner; ca colon) Sometimes aids were borrowed from acquaintances: We go out once in a while, for instance when there is a farmers market, and we take the wheelchair with us. He got that from a friend of his whose wife had passed away, but he [the friend] had to buy that out of his own pocket. (f08, partner; ca colon) Regarding the family caregivers’ needs for professional home care three dimensions of support were identified: instrumental, emotional and information related. In particular, GPs and home care nurses provided care for terminally ill people. Availability of care and aids, and continuity of care are essential to enable terminally ill people to stay at home. Instrumental support involves practical assistance in the daily care of the patient, providing aids, and night-care if necessary. I was able to sleep, I did get some rest during that time [receiving night care]. Normally I didn’t manage that. (…) Night care is very important in my opinion. I even think you can cope much better during the day when you have regular night care. (f02, daughter; ca brain) Instrumental support may relieve the care burden and facilitate continuing one’s own activities. Emotional support concerns support in keeping control, in continuing one’s own activities and social contacts, and in maintaining (realistic) hope. Furthermore, emotional support involves respect for the choices family caregivers make about their involvement in the care of the terminally ill person, acknowledgement of the care they give, and somebody who listens to their concerns. Then I said to her [GP]: ‘Darn, I’ve been tired for fourteen days (…). I feel like an old guy.’ ‘Sure’, she said, ‘What do you think you are going through? That’s not just something, it has to get out of your system.’ (f05, partner; ca ovary) Emotional support may facilitate satisfaction, and may decrease fear, insecurity, and loneliness. Instrumental and emotional support need not and cannot always be distinguished, as is shown in the following example: The homecare. Because they also talk with me. And it isn’t that they just come in for care and then leave again. We usually have a conversation. And the night care staff as well. (…) [We talk about] That it all has happened so fast. Well, that you have to do everything alone now. (f03, partner; ca lung) Information related support includes fine-tuned and frequent information about prognosis and expected complications, instructions about how to help the patient, and information about medication, aids, and the care given by the professionals. Being included by the providers in the care of the patient and being involved in the decisionmaking process is highly supportive for family caregivers: He [the patient] had an ulcer on his tailbone. And they came daily when it wasn’t healing well: ‘Come 2003 Nordic College of Caring Sciences, Scand J Caring Sci

119

and have a look?’ It is almost healed now. They showed me each day. ‘See how well it heals?’ That’s one of those small examples. (f03, partner; ca lung) Family carers value information about aids to relieve daily care, and the provision of those aids: Yes, those pads [cellulose blankets], it saves a lot of work.(…) I only need to mention something or they come with this or that, really, that is all very good. (f02, daughter; ca brain) Relevant information may decrease the care burden, fear, insecurity, loneliness, and may provide (realistic) hope, and facilitate keeping control.

Discussion This grounded theory study has identified ‘vulnerability’ as the core category. Caring for a terminally ill person at home requires continuous balancing between care burden and capacity to cope. Whether or not the carer will succeed in keeping in optimum balance is dependent on a number of factors impinging on the vulnerability. Care burden, restricted activities, fear, insecurity, loneliness, facing death, lack of emotional, practical and information related support are factors which may increase the caregiver’s vulnerability, and are possible risk factors for fatigue and burnout. Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the family caregiver’s vulnerability and may protect against fatigue and burnout. The family caregivers’ needs for professional home care include three dimensions of support: instrumental, emotional and information related support. Availability of care and aids, and continuity of care are essential to enable terminally ill people to stay at home. The findings from the present study are related to the work of others who have tried to understand the role of family caregivers in a terminal illness situation. Several authors, although studying palliative care in contexts not limited to patients with a life expectancy of 3 months or less at home, mentioned the same home care needs of family caregivers: instrumental, emotional and information related support (16–19). Nijboer et al. (20) studied the psychometric qualities of the Caregiver Reaction Assessment Scale (CRA) in a multicentre study among partners of newly diagnosed colorectal cancer patients. They identified five dimensions of the impact of caregiving in the CRA through exploratory factor analysis: disrupted schedule, financial problems, lack of family support, health problems, and the impact on caregiver’s self-esteem. On the one hand, these dimensions relate to the vulnerability increasing factors ‘restricted activities’ and ‘lack of emotional, practical and information related support’ in the present study; on the other hand to the vulnerability decreasing factors ‘continuing previous activities’, ‘good support’ and ‘satisfaction’.

120

I. Proot et al.

In addition to studies on caregivers’ experiences related to terminally ill people, research has been carried out on caregiving for demented elderly persons providing partly similar results. Almberg et al. (21, 22) studied burden and burnout among caregivers of demented elderly people. One of their studies (21) indicated among others that initially high levels of poor health, limitation in social life and a lack of a positive outlook on the caregiving situation seemed to be risk factors for burnout. This is related to the vulnerability increasing factors ‘restricted activities’ and ‘facing death’ in our study. Another (qualitative) study of Almberg et al. (22) highlighted that accepting the situation, seeking information and seeking social support seemed to be effective coping strategies. This relates to the vulnerability decreasing factor ‘good support’ in our study. Terminal palliative care includes the patient and his or her family, and considers them as a unit of care. However, in a study among terminally ill persons and their carers Woods et al. (23) concluded that health professionals were not sensitive enough to the role of the family in palliative care. A number of studies pointed at a strong accent on instrumental care given by professional carers to family carers and a lack of emotional or psychological support (6, 7). Being ignorant of the actual needs of family members in palliative care may lead to inadequate provision of care. Caring about or noticing the need to care is a first step in the process of care as described by Tronto (24). Caring for the carer requires that the health professionals are aware that family carers also constitute the object of care, to see if particular support is needed. The present study identified the vulnerable position of family carers needing particular attention of professionals working in terminal home care. From the perspective of an ethic of care, vulnerability is an integral part of human life (25). Vulnerability does not mean powerlessness. Family carers are in a vulnerable position just because they play a crucial role in the care of a terminally ill family member. Vulnerability and autonomy are not each others opposites, but may go together, if all participants involved (terminally ill persons, family caregivers and professionals) are cognizant of the need for care accompanying vulnerability. The present study was limited to interviews with family members of terminally ill persons with a life expectancy of 3 months or less, living at home in the province of Limburg, the Netherlands. The demographic variables of the family caregivers participating in our study show that these caregivers are a representation of the group which is generally involved in the care of terminally ill persons at home. Generalization of the results to family members of terminally ill persons in other settings, for example, patients in hospices, nursing homes, or hospitals, requires additional research. The experiences of the caregivers in our study showed that the support from informal and professional caregivers

was not sufficient. Education and practical tools may make professionals more sensitive to the vulnerable position of family caregivers, even when these caregivers do not show their vulnerability. Additional work is needed to examine the education and training of professionals concerning the vulnerable position of families caring for terminally ill people, and should also include counselling so that professionals can more effectively assist carers. More research is warranted to identify family members caring for terminally ill persons who are at high-risk of burnout, and to explore the needs and experiences of families of terminally ill persons in hospices, nursing homes and hospitals. It is recommended that family needs in terminal care be assessed and monitored on a regular basis. The development of an appropriate assessment tool for this sector is highly recommended and warrants more attention in future research.

Acknowledgements We gratefully acknowledge the contributions of the terminally ill persons, their family members, and the health professionals, in particular GPs, who helped recruit patients to the study. We express our thanks to Marian Proot for translating the Dutch interview scenes into English. Research on which this article was based was supported by a grant from the Dutch Government for Health, Welfare and Sports. The study was conducted in collaboration with the Centre for Development of Palliative Care Maastricht (COPZ-M).

References 1 Francke AL, Willems DL. Palliatieve zorg vandaag en morgen. Feiten, opvattingen en scenario’s (Palliative Care Today and Tomorrow. Facts, Opinions and Scenarios). 2000, Elsevier, Maarssen. 2 World Health Organization. Cancer Pain Relief and Palliative Care. Geneva: Technical Report Series, No. 804, 1990. 3 Higginson I, Wade A, McCarthy M. Palliative care: views of patients and their families. BMJ 1990; 301: 277–81. 4 Jones RHV, Hansford J, Fiske J. Death from cancer at home: the carers’ perspective. BMJ 1993; 306: 249–51. 5 Field D, Douglas C, Jagger C, Dand P. Terminal illness: views of patients and their lay carers. Palliat Med 1995; 9: 45–54. 6 Rose K. How informal carers cope with terminal cancer. Nurs Standard 1997; 11: 39–42. 7 Grbich C, Parker D, Maddocks I. The emotions and coping strategies of caregivers of family members with a terminal cancer. J Palliat Care 2001; 17: 30–36. 8 Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, Van den Bos GAM. Cancer and caregiving: the impact on the caregiver’s health. Psycho-oncology 1998; 7: 3–13. 9 Leis AM, Kristjanson L, Koop PM, Laizner A. Family health and the palliative care trajectory: a cancer research agenda. Cancer Prev Control 1997; 1: 352–60.


Family caregivers and terminal care 10 Strauss A, Corbin J. Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory, 2nd edn. 1998, Sage, Thousand Oaks, CA, USA. 11 Denzin NK, Lincoln YS. Handbook of Qualitative Research. 1994, Sage, Thousand Oaks, CA, USA. 12 Munhall PL, Oiler Boyd C. Nursing Research: a Qualitative Perspective, 2nd edn. 1993, National League for Nursing Press, New York, NY, USA. 13 Beaver K, Luker K, Woods S. Conducting research with the terminally ill: challenges and considerations. Int J Palliat Nurs 1999; 5: 13–17. 14 Denzin NK. The Research Act: a Theoretical Introduction to Sociological Methods. 1989, Prentice Hall, Englewood Cliffs. 15 Sim J, Sharp K. A critical appraisal of the role of triangulation in nursing research. Int J Nurs Stud 1998; 35: 23–31. 16 Wingate AL, Lackey NR. A description of the needs of noninstitutionalized cancer patients and their primary care givers. Cancer Nurs 1989; 12: 216–25. 17 Groot de A, Francke AL, Willems DL. Kwaliteit van palliatieve zorg. Behoeften van terminale patie¨nten en naasten (Quality of palliative care. The needs of terminally ill patients and their family members). Verpleegkunde 2000; 15: 91–103. 18 Akker van den PM (ed.), Kok NM, Tits van MHL. Leven met de dood. Over terminale patie¨nten en terminale zorg in Nederland


19 20

21

22

23 24 25

121

(Living with Death. About Terminally Ill Patients and Terminal Care in The Netherlands). 1994, Bohn, Stafleu Van Loghum, Houten. Kristjanson LJ. Quality of terminal care: salient indicators identified by families. J Palliat Care 1989; 5: 21–28. Nijboer C, Triemstra M, Tempelaar R, Sanderman R, Van den Bos GAM. Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA). Soc Sci Med 1999; 48: 1259–69. Almberg B, Grafstro¨m M, Winblad B. Caring for a demented elderly person–burden and burnout among caregiving relatives. J Adv Nurs 1997; 25: 109–16. Almberg B, Grafstro¨m M, Winblad B. Major strain and coping strategies as reported by family members who care for aged demented relatives. J Adv Nurs 1997; 26: 683–91. Woods S, Beaver K, Luker K. Users’ views of palliative care services: ethical implications. Nurs Ethics 2000; 7: 314–26. Tronto JC. Moral Boundaries: a Political Argument for an Ethic of Care. 1994, Routledge, New York. Manschot H. Kwetsbare autonomie? (Vulnerable autonomy?) In Ethiek van de zorg. Een discussie (An Ethic of Care. A Discussion.) (Manschot H, Verkerk M eds), 1994, Boom, Amsterdam, 97–118.