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The daily living for informal caregivers with a partner with Parkinson’s disease - an interview study of women’s experiences of care decisions and self-management

2011; Wiley; Volume: 3; Issue: 4 Linguagem: Inglês

10.1111/j.1752-9824.2011.01126.x

1752-9824

Lise Hounsgaard, Birthe D. Pedersen, Lis Wagner,

Chronic Disease Management Strategies

Journal of Nursing and Healthcare of Chronic IllnessVolume 3, Issue 4 p. 504-512 ORIGINAL ARTICLEFree Access The daily living for informal caregivers with a partner with Parkinson’s disease – an interview study of women’s experiences of care decisions and self-management Lise Hounsgaard PhD, Lise Hounsgaard PhDSearch for more papers by this authorBirthe Pedersen BD, PhD, Birthe Pedersen BD, PhDSearch for more papers by this authorLis Wagner Dr.PH, Lis Wagner Dr.PHSearch for more papers by this author Lise Hounsgaard PhD, Lise Hounsgaard PhDSearch for more papers by this authorBirthe Pedersen BD, PhD, Birthe Pedersen BD, PhDSearch for more papers by this authorLis Wagner Dr.PH, Lis Wagner Dr.PHSearch for more papers by this author First published: 14 November 2011 https://doi.org/10.1111/j.1752-9824.2011.01126.xCitations: 13 Lise Hounsgaard Campusvej 5, DK-5230 Odense M Denmark Telephone: +45 292 75599 E-mail: lhounsgaard@health.sdu.dk AboutSectionsPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Abstract hounsgaard l, pedersen b & wagner l (2011) Journal of Nursing and Healthcare of Chronic Illness 3, 504–512 The daily living for informal caregivers with a partner with Parkinson’s disease – an interview study of women’s experiences of care decisions and self-management Aim. To throw light on the lived experiences of female partners of patients with Parkinson disease living at home. Background. It is known that daily life with a partner with Parkinson’s disease entails radical upheaval in the family, in particular for the female partner. Methodology. A phenomenological hermeneutic approach was used. Interviews with female partners (N = 10) of patients with Parkinson disease who were living at home were conducted in Denmark in 2008. The French philosopher Ricoeur’s theory of interpretation guided the data analysis. Conclusion. This study shows that essential to the women’s experiences was the impact on daily life and changes to their quality of life in living close to a partner with Parkinson’s disease. As the disease gradually developed to affect motor, cognitive and emotional functioning, the need for care decisions related to help with daily activities and functions arose, and the women became informal caregivers. Relevance to clinical practice. The results could add to health providers’ understanding of the significance of informal care and raise the consciousness of women caregivers about how their own quality of life diminishes by setting aside their own needs in favour of the care needs of their chronically ill partner. The women’s contribution should be better valued, and they should be supported to a greater extent to retain/maintain their self-management capacity. Respite and relief from the care burden should especially be provided for women who live at home with a chronically ill partner. Introduction In recent years, there has been growing interest in quality of life from the perspective of informal caregivers living with patients with a chronic disease. This article is part of a larger research project that investigates living with Parkinson’s disease (PD) and quality of life, from the perspective of both the person with PD and their partner. This article is specifically concerned with a study of women’s experiences of living with a partner with PD and adds knowledge about the daily burden of making care decisions for a partner who has impaired judgement and planning capacity and the impact of the duty of care on the carers’ self-management. The study took place in Denmark (2007–2008) at a time when the political aim was to reduce the number of long-term care facilities and increase home-based, family-centred care. However, this is only possible if there is a family caregiver to take care of the person with PD. Background Parkinson’s disease is a progressive neurological disease that has an onset around age 55–60. The disease affects motor, cognitive, psychological and neuropsychiatric functioning, displayed in shaking, rigidity, slowness of movement and postural instability. Furthermore, dementia often develops over time and as part of the course of the disease (Thanvi et al. 2003). PD has a major impact on daily life. It entails major upheavals for the whole family, and it brings with it increasing care needs (Eriksson & Svedlund 2004). As the number of people with PD increases, the need for informal caregivers will become greater. The family caregiver is often an older person caring for another older person (Collins & Jones 1997). Caregiving is traditionally defined in terms of help with daily activities, such as personal hygiene, feeding, getting dressed and instrumental activities such as cooking, house cleaning and laundry (Nolan et al. 1996). Providing care for a person with PD can also adversely affect the caregiver’s relationship with the family and friends, reduce their time for leisure and social activities and undermine their physical and mental health (Aarsland et al. 1999, Whitlatch et al. 2009). Thus, family caregiving is a burden that can increase the likelihood of illness in the partner providing informal care. Caregivers often experience a reduction in quality of life (Ekwall et al. 2004). Gender differences have been reported, with men having a higher rate of PD than women (Van Den Eeden et al. 2003). Consequently, female partners are involved to a greater extent than male partners in daily care activities for the person with PD, in terms of assistive, supportive and compensatory functions (Eriksson & Svedlund 2006). Making choices in daily care implies a greater risk of psychiatric morbidity – mostly for women (Yee & Schulz 2000). A UK study shows rising mortality rates for caregivers: 65% for women and 38% for men (Collins & Jones 1997). The strain on family members as informal caregivers should therefore not be underestimated. The aim of this study was to throw light on the lived experiences of female partners’ self-management and daily care decisions especially when cognitive impairment is involved in patients with Parkinson disease living at home. Methodology A phenomenological hermeneutic interpretation methodology inspired by the philosophy of Ricoeur (1976, 1988) was used to uncover the meaning in women’s everyday lived experiences and to interpret these meanings. Material from the interviews with the women was written down as a text in the preparation for interpretation of the meanings of the text. Ricoeur describes interpretation of a text as the hinge between language and lived experience. The focus in this process is on what the text is saying and what it speaks about. Ricoeur describes the interpretation of texts as an ongoing dialectic movement between the parts and the whole of the text and between explanation and understanding. To understand a text is to follow its movement from sense to reference: from what it says to what it speaks about. The approach in this study has been further developed by Scandinavian researchers (Pedersen 1999, Lindseth & Norberg 2004, Hounsgaard et al. 2007, Dreyer & Pedersen 2009). The method of interpretation moved between three steps: naïve reading, structural analysis and comprehensive understanding (Lindseth & Norberg 2004). The naïve reading was non-judgemental and open-minded, to grasp meaning in the text as a whole. This step was the analysis first conjecture to prepare for the structural analysis. The structural analysis was conducted to explain the text and sought continually to identify and formulate themes. As shown in Table 1, this analysis took the form of a movement from units of meaning in the text to units of significance. The authors are nurses. Our pre-understanding as nurses, the theoretical stances we took and the aim of the investigation, together with the naive reading and findings from the structural analysis, provided the background for the comprehensive understanding and critical reflection (Ricoeur 1976). Table 1. The data analysis process Units of meaning Units of significance Themes What is being said (non-judgemental reading) What is being talked about (primary interpretation) Derivation of central themes (critical interpretation) In a phenomenological hermeneutic interpretation, one can never be free of one’s pre-understanding. As a researcher, one has to be aware of it through critical reflection. The interpretation in this study presents one possible way of being in the world. Materials and methods Setting The participants were women living with a partner who had PD. The study was carried out in the Region of Southern Denmark during the period October 2007 to January 2008. Nurses working in two neurological outpatient departments recruited the female participants while their PD partner was in for a check-up. The participants and their partners gave their written consent. Sample Participants A letter containing information about the study was distributed to the women who had undertaken to participate in the project. They were asked to participate in an interview regarding their daily life experiences of living with a partner with PD. The criteria for participation were that they should be able to speak and understand Danish and were married to, or cohabiting with, a PD partner who was living at home. Ten women between the ages of 51 and 80 were asked and agreed to participate in the study. The women were included consecutively. None were excluded. The average age was 65·8. Three of the women, aged 51–62, were still working. Three women between the ages of 60 and 65 had retired early owing to their partner’s PD and care needs. Four women, aged 69–80, were retired and still actively providing care for their partner. All the women had been married to their PD partner for more than 21 years (M = 37·5). Seven had between one and three children, and three had no children (Table 2). Table 2. Overview of the women’s ages, length of marriage, number of children and numbers of years since their partner’s Parkinson’s disease diagnosis at 2008 Wife (partner) Age Years married No. of children No. of years since PD was diagnosed 1 78 21 0 1 2 78 60 3 6 3 80 47 2 1 4 63 39 2 4 5 65 43 0 6 6 62 42 2 2 7 60 35 3 1 8 52 27 1 1 9 69 31 0 2 10 51 30 2 13 Mean 65·8 37·5 1·5 3·7 Four women had known about the PD diagnosis for 1 year. Two had known for 2 years and four women for between four and 13 years (M = 3·7). None of the PD partners were active in the work market. The couples lived in their own homes and were dependent on a car for shopping and other everyday errands. Nine of the women had a driving licence, and six of the partners still drove a car. In two couples, the wife was responsible for the housework and the husband for the car and garden. In three couples, it was the women who took on all responsibilities, with help from grown-up children. In four couples, the women had full responsibility but without support. Finally, one PD partner had, at the time of the interview, just moved into a care home. In addition, at the time of interview, five partners used aids (active walker or wheelchair) to support daily activities. Interviews The interviews (Kvale & Binhmann 2009) were conducted by the first author. The participating women were asked to speak freely about whatever was important to them in their everyday lives. The interviews started with the question: ‘Can you please tell me about your daily life with a partner who has PD?’ and was followed by clarifying questions, such as: ‘Can you give me an example?’ The main role of the interviewer was to listen actively and help the women to tell about their everyday lives from their own perspectives. The interviews each lasted about one hour and took place in the women’s homes. The audio-taped interviews were stored in a sound-based data program, called Qualitative Media Analyzer, that facilitates analysis of sound data without transcription and in accordance with Ricoeur interpreted as if it were a text (Hounsgaard 2003). Ethics The women were informed both orally and in writing that their participation was voluntary and that they could withdraw from the study at any time without a given reason. The interviews were conducted in the participants’ homes without the PD partner being present. The experience of narrating about sensitive issues and experiences in life with a chronically ill partner can cause participants to become overwhelmed by emotion. Therefore, adequate time was set aside for the interviews. The participants were assured anonymity and confidentiality in the presentation of results. The study was approved by the Regional Ethics Committee and Danish Data Protection Agency (j.nr. 2009-41-3595). Results The analysis was carried out by the three authors. Naive reading The interview text was read several times with a phenomenological approach to initiate the approach for the structural analysis (Pedersen 1999, Lindseth & Norberg 2004). The text highlighted the fact that the women felt it was a challenge to learn to get through daily life with a chronically ill person. The women spoke about the significance of having new areas of responsibility in their daily life and the varying degrees of help and support for the partner and self-care management as the disease gradually progressed. The women spoke of reallocation of, and changes in, responsibility, in both emotional and practical contact with the family, with social networks and with the health service. The women expressed that it was hard to look after their own needs when living with a chronically ill husband. The disease-determined changes led to the women experiencing powerlessness and helplessness when they gave way to anger and frustrations. The women had difficulty in finding surplus energy when their powerlessness over the partner’s lack of ability gave way to anger. Their anger grew whenever new restrictions or changes to everyday life became necessary. There was almost exclusive focus on the partner and regarding care decisions about his increasing needs for care and assistance. The women talked about their own increased tiredness and lack of energy to manage the care for themselves, or to socialise with others or take part in activities outside the home. Structural analysis The interpretation continued with the structural analysis of the text, which sought to formulate themes (Pedersen 1999, Lindseth & Norberg 2004). The text was systematically read and divided into meaning units from the text in the naive reading. A meaning unit could be a few words or a whole sentence. The meaning units were reflected against other meaning units, which gave insight into the experiences of living with a person with PD. The reflection process made it possible for structures to emerge and to formulate themes for further interpretation. Six themes arose from the analysis (Table 3). Table 3. Results of the structural analysis Units of meaning (quotations) Units of significance Themes ‘Now suddenly everything revolves around him’ The women experienced that the PD diagnosis demanded a new way of living together Learning to live as partner to a chronically ill patient ‘He doesn’t remember to take his medicine, but he doesn’t talk about that’ The women saw changes in partner’s personality and motor function, which led to the need for contact with the health service Contact with health service ‘I don’t know him anymore’ The women felt exhausted and bitter in life with a PDP with a cognitive deficit Between power and powerlessness ‘I forget to look after my own well-being. I’ve stopped cycling to work, which I loved to do’ The women experienced frustration about the lack of freedom to do as they did before the PDP became dependent on support, care and assistance Change in self-management Theme 1 – learning to live as partner to a chronically ill patient For the women, the diagnosis meant that they had to learn new ways to live together as a couple, owing to the progression of the illness and its effects on both cognitive and motor functions. One middle-aged woman, who had throughout her long marriage felt protected by her partner, suddenly found that she was alone in having to relate to PD as a chronic disease and make the decision about needs for care. She described how it developed over time and affected her everyday life: Now suddenly it’s me that has to be the protective one. For a long time my husband would not admit that he was sick and therefore refused to take his medicine. I couldn’t understand it, because his job was under threat due to the symptoms and the medicine would help. (informant 8) The women’s everyday lives could be described as a learning process with continuous acquisition of new competencies to cope with daily life. The PD diagnosis forced the women to develop new ways to live as a couple where one partner was chronically ill. The learning was experienced in different ways. Some women got support from their PD partner, where others were alone with the job of learning: Now suddenly everything was about him. The children came second. And he didn’t want to speak about it as a chronic, progressive disease which had come between us in our marriage. He insisted that I wasn’t to talk to other people about the disease. Apart from family, I was not to tell others that he had got a diagnosis. It was difficult not to be able to talk about how it was for us. (informant 5) For this woman, the energy to learn became consumed in the effort to maintain an outward appearance of a normal family life, which at the same time denied her the possibility of developing an identity as a partner to a chronically ill person. Other women were requested not to attend events where family relations of persons with PD would meet and speak about life with a chronically ill person. Most of the women complied with their partner’s wishes. However, they recognised that engaging with other women who also had chronically ill partners was a good opportunity to learn. Here, they got ideas about how to tackle specific problems in daily, life and it provided them with new energy by sharing their experiences with others in a similar situation. However, some of the women did come to terms with not being in contact with like-minded people. The oldest women gave up the attempt to learn as their partner’s needs for their assistance and care increased. Lack of energy led to them choose not to take part in activities outside the home. Theme 2 – contact with the health service The task of administering medication played a central role in the women’s everyday lives. Most PD medications need to be taken at precise intervals to prevent muscle stiffness, which means that capacity for self-care is reduced. As the disease gradually developed, self-administration of medicine decreased. This woman took the following responsibility: My husband can’t remember any longer if he has taken his medicine and I know how important it is, so I’ve quite simply developed a system with different colored egg boxes and an alarm clock. It works really well, but I still have to keep an eye on him. Now and again, on bad days, he can forget why the alarm is going off. (informant 3) The women all took on a role in relation to the administration of medicine. Close observation of the partners’ condition was necessary to make the administration possible. The women therefore gave high priority to observation and medicine regulation. They were surprised that their observations were not actively discussed during check-ups at the neurological outpatient department. Their experiences of everyday life were not used: My husband sat in the outpatients with the doctor and told how it was going really well and that he didn’t have any side-effects from the medicine. I thought that the doctor must surely know that PD patients often have a memory like a sieve. The doctor didn’t ask how I thought it was going. (informant 9) The women expressed that they needed to discuss observations in relation to medicine regulation and find out how they could expect the illness to develop. Therefore, at a later point, they considered calling the outpatient department to seek the advice of health professionals. Theme 3 – between power and powerlessness The imbalance between the couples increased in line with the disease progression. The women often felt that they exerted power over their partners. One woman described having to force through a decision to move her partner to a nursing home against his will. She was middle-aged and had neither the financial means nor the desire to give up her job to become a full-time informal caregiver. Her work gave her breathing space from her daily life with a partner with many care needs. Despite help from both family and primary health care services, she found the care burden that awaited her at home every day after work was too much to bear: I couldn’t take it anymore. Very soon there would be two ill people in this house if it had continued. I couldn’t let my husband be alone in the house even for a few hours. He was confined to a wheelchair and not capable of making an emergency call. Whenever he fell, he lay on the floor until I came home. (informant 10) Like this woman, other participants felt that it was irresponsible to leave their partner. They were beset by a dilemma: on the one hand, they would have to force an adult person to move, while on the other hand, they had to accept that it was necessary, when their partner could no longer manage his life because of the advanced nature of the disease. However, it was the consequences of personality changes that were experienced as the worst element. These changes caused the women to feel that they cared for someone who was almost a stranger, but because of a long marriage, they felt it was their duty to continue to care for their partner. The feeling of frustration increased. It came to light in relation to not being able to look to someone on an equal footing in everyday life. Exhaustion and helplessness were experienced on a daily basis along with anxiety about the future: What on earth is going to happen. I am up to the taking on the care burden. I can’t just give it over to others. It’s me who knows exactly how things need to be done. (informant 9) The anxiety surrounded the possibility of the care burden becoming so great that they could no longer manage alone on a daily basis. They experienced powerlessness in that they could not imagine leaving the care of their husband to a stranger. At the same time, the fear that they themselves would become sick and could not care for their ill husband gnawed away at them. These feelings of helplessness and anxiety could give way to bitterness. It was the personality changes in particular that caused the women to feel that their partners had taken their life away: After a long working life and with the children raised, I thought that we would travel and enjoy life. Instead I have to look after him day and night. (informant 4) They had a bad conscience when they sometimes lost control and became angry and shouted at their partner. Theme 4 – change in self-management The women struggled both with taking into consideration their partner’s manifest need for care and with securing their own self-care in their everyday lives. The women did not necessarily inform their grown-up children or the health services that they needed help in caring for their partners. As the disease developed, the women managed not only the practical tasks but also tasks in relation to personal hygiene and retraining of their partner. In that way, the women took on an increasing burden of care without consciously reflecting on whether they had sufficient resources to manage the increasing load. For one 80-year-old woman, the extent of the strain only became obvious when she collapsed on the floor one night owing to lack of sleep because her partner needed her assistance to turn over in bed. She was rushed to hospital and kept in for observation. There was no sign of illness, but it was clear that she was exhausted. After 3 days of sleep in hospital, she was refreshed: You see, we are used to looking after ourselves... so I didn’t know that it was possible to get help from social services. (informant 3) This woman was not able to direct others’ attention to her need for support until she buckled under and became both physically and psychically worn out. She was not in receipt of support owing to lack of information about the available support from the health service system. Exhaustion was a universal phenomenon. The responsibility for many activities both in and outside the home combined with the partner’s need for round-the-clock help led to the feeling of never being able to rest. Even though the women knew about the importance of self-management and knew that an individual is responsible not only for those around them but also for themselves, they set their own needs aside. This woman gave up cycling to work and drove by car instead. Her partner was partly worried that she would be mugged along a lane early in the morning, but she herself was also worried that something would happen to her: If I wasn’t here, what would happen to my husband? I can’t bear to think about it. (informant 8) This anxiety was found in similar situations among the other women, and they allowed themselves to become partially isolated in their homes. As the disease progressed, they dropped hobbies and other interests so that they had more time for their partner. Tiredness often meant that they did not have the will to keep up contact with friends and acquaintances. Relations with others became restricted to close family and representatives from the health services who provided assistance in the home. The women based their isolation either on the fact that their ill partner did not like to be alone or on the fact that they judged that his care needs meant that he could not be left alone. In that way, the women often declined social contact. When it became increasingly difficult to manage activities outside of the house on top of the care burden and practical chores at home, get-togethers with friends, exercise classes, the knitting club and visits to cafes were reduced or stopped altogether. The women developed their own methods to get through their daily life with a chronically ill partner. It became a life that could be characterised by helplessness. The younger women expressed difficulty in accepting the isolation and the growing loneliness, while the slightly older women considered it to be a necessary condition of living with a chronically ill husband. Mutual worry about each other in the care relationship was most apparent in the oldest women. The option of divorce as a possible way out of loneliness and the strain of the care burden did not arise for either the younger or the older women. Discussion Daily life for a woman living with a partner who had PD was characterised by a balance between taking into account one’s own needs and self-management while making decisions about the PD partner’s increasing care needs. The extent of the care provided was in proportion to the effect of the disease on their partner’s motor, cognitive and neuropsychiatric functions. As shown by two Scandinavian studies (Aarsland et al. 1999, Thommessen et al. 2002), the care burden became heaviest when cognitive functions were affected. Changes in cognitive functions mean that reciprocal relations in the couple’s relationship cannot be maintained, with the risk of the development of caregiver distress. The Norwegian care researcher, Kari Martinsen (1989), mentions two types of reciprocity in a care relationship: (1) a general reciprocity and (2) a balanced reciprocity. Balanced reciprocity is usually evident in an equal, give-and-take relationship in daily caring for one another in a couple’s relationship. This balance cannot be maintained in a care relation where the partner has a chronic, progressive disease such as PD, which causes not only cognitive but also motor and emotional changes. Balanced reciprocity will gradually disappear and finally be substituted by a general reciprocity. General reciprocity in a relation between a healthy person and a chronically ill patient who needs care is an imbalanced relation, which is characterised by the healthy party carrying out selfless care for their ill partner. As opposed to a balanced reciprocity, this means that a woman who performs comprehensive care for her partner cannot expect anything in return. Because of a gradual slippage from balanced to generalised reciprocity, the women in this study gradually found themselves acting as informal caregivers, in a way that has much in common with professional care. Professional care is characterised by the fact that the staff as caregiver cannot expect anything in return, apart from satisfaction in helping another human being who needs assistance to manage their self-care. Informal caregiving in the study varied from provision of care for particular functions to covering all aspects of life, both day and night. As such, when the disease progression demanded comprehensive care, it was these women’s contributions as informal caregivers that were the deciding factor in whether the chr