Occupational balance among family members of people in palliative care

Abstract

Background: Today people can live a long time with a chronic cancer diagnosis, and it affects the entire family. Family members to patients in palliative care often have to leave valued occupations due to lack of time and energy, while new roles are forced upon them, potentially affecting their health.

Objective: To explore occupational balance, needs and roles among family members to persons in palliative care.

Methods: Six semi-structured interviews were conducted with family members to terminally ill persons enrolled to specialized palliative care. A qualitative content analysis guided the data collection and analysis.

Result: An overarching theme Striving for control while being in the disease, and two categories Changing roles and occupations in the family; and Handling emotions in the end of life emerged from the data.

Conclusion: The findings suggest that family members could benefit from strategies to maintain valued roles and occupations, and that palliative care provision need to develop new ways to take family members needs into consideration.

Keywords:

• Relative
• qualitative interviews
• activity
• family caregiver
• cancer
• content analysis

Introduction

A cancer diagnosis affects not only the ill person but also the entire family [1]. There are several effective treatments of cancer, and people can live a long time with the diagnosis, from months to decades. When the disease treatment transition into being palliative, and no longer is curable most people want to be cared for and die at home [2]. In order to make care at home as good as possible, different specialized care services are most often required, including the support and help from a family member [3,4]. Specialized palliative care in Sweden is mostly based on in-home-care, and in 2015 the average time for a patient enrolled to the specialized palliative care teams were 46 days, and only on average 9 days were spent at the hospice [5]. When enrolled to the specialized palliative care most often the patient have lived with their diagnosis for a long time. Applying a team approach to address the needs of the patient and their families, specialized palliative care offers a support system to help family members cope during the patient’s illness. In fact, the family is considered to be a central member of the palliative care team [6], also acknowledged by the Swedish welfare system, stating that family members and other significant persons can receive financial compensation of 80% of income for 100 days when caring for a terminally ill person [7]. That is, the welfare system may anticipate that family members can and want to be part of the caring for the ill person, and that such involvement always has a positive value [8–10]. However, studies have shown that there are both positive and negative experiences among family members caring for a loved one at home, with the negative ones often related to their psychological health [11–13].

Several factors complicate and affect the family member’s everyday life, such as declining cognitive functions in the ill person, lack of practical support and lack of capacity in caregiving itself [1,14]. Existing research points out that family members to patients with a palliative disease have an increased vulnerability, often become caregivers, and feel a loss of control and a decreasing personal space, as well as lack of social support [1,8,15–17]. Family members to an ill person are often taken out of their ordinary context and affected in their everyday life by e.g. changes in their physical, psychological and social environments, and many times by financial constraints. Most importantly, studies indicate that family members to patients in palliative care face difficulties in everyday life [3,4,8,14,16,18–22], potentially leading to ill health [23–25].

Difficulties in managing everyday life include difficulties to manage necessary and desired occupations. Occupations are defined as ‘all that people need, want, and are obliged to do’ [23,p9]; they bring meaning and structure to life, organizes time, and contribute to self-identity [23]. Occupational balance can be described as the right amount and variation between occupations in everyday lives [26]. Occupational balance is subjectively defined and strongly connected to health and wellbeing [27]. Thus, it is crucial to maintain occupational balance e.g. by fulfilling one’s own occupational needs. However, family members to people with severe illness may have to take on new roles and at the same time set aside their own occupational needs. Research suggests that role imbalance can be related to poorer wellbeing and financial status, and accordingly, having a satisfactory balance between important roles and occupations seems to be crucial for health and wellbeing [26,27]. In spite of previous research targeting family members to terminally ill patients [18–22], as well as on occupational balance [24,27], not much is known about how family members caring for terminally ill patients experience their occupational balance, needs and roles. Therefore, the purpose of this study was to explore the occupational balance, needs and roles among family members to persons in palliative care in Sweden.

Materials and methods

This study applied a qualitative design, using semi-structured interviews to collect data.

Sampling and participants

The data from this study is from interviews of family members to cancer patients enrolled into three different specialized palliative care units and one hospital in South Sweden. In order to gain as rich information as possible purposeful sampling was used [28]. The family members were recruited by means of snowball sampling during 14 months, with help from occupational therapists and nurses at all three palliative care units and the one hospital based on the following inclusion criteria: being a family member to a patient enrolled into a specialized palliative care unit, be over aged 18 and able to communicate in Swedish. The specialized palliative care units were located in demographically different areas but were all organized under the primary care. In total six family members, two males and four females aged 22–56 years were interviewed. Four of them were cohabiting with the patient, and the other two lived in their own homes. One of the family members who lived in his/her own home chose to move in with the ill patient four months prior to death. Four family members were working, one was a student and one was on disability pension. One of them had children under 18 years of age, staying at home, and three had children who had moved away from the home before their parent became ill. Four of the interviews were made after the loss of their family member (less than 6 months ago).

Procedure

Before the interview the family members gave their written informed consent to participate in the study. An information letter explaining the purpose of the study, the data collection and analysis procedures, as well as the form of result presentation was sent by mail in advance. The letter also included information about the right to drop out at any time, as well as contact information to the authors.

Semi-structured interviews with open-ended questions were used for the data collection in order to encourage the family members to speak freely about their experiences. The interview had a conversational tone, and aimed to capture as many aspects as possible of the informant’s experience of the phenomenon [29]. All interviews were conducted by the first author and started with the question ‘I’m interested in your everyday life in the context that you are a family member to a very ill person being a patient at a specialized palliative care unit’ with follow up questions such as ‘can you tell me more about that’ or ‘can you explain more about that’, thus providing the opportunity to clarify or to elaborate on the responses. The first author gently guided the conversations to make sure that all relevant areas were covered. Depending on what information emerged the interview was flexible in what direction that seemed to be appropriate to gain more information [30].

The family members were given a choice between doing the interview in their home or at the author’s workplace to avoid the risk that someone would overhear what they were saying, which could have affected the answers [31]. Four of the interviews were conducted at the author’s workplace and two in the home of the family member. The interviews were conducted from April 2015 to July 2016. Each interview lasted between 29 and 90 minutes. The interviews were audio taped and transcribed verbatim by the first author.

Data analysis

Data were analyzed using qualitative content analysis [32]. The first author read the interviews several times to get a sense of the content and a general sense for the material. Thereafter the text concerning the family members’ occupational needs and roles was divided into condensed meaning units, maintaining the essence and answering the question ‘what is this about?’ The condensed meaning units were then labeled with a code briefly describing its content. The first author had significant experiences from working in specialized palliative care. Since this kind of experiences can affect the data analysis process, simultaneously, a senior researcher coded the data and later on the two coding schemes were compared. In the next step the codes were abstracted into a main theme, the latent content, followed by categories and subcategories, the manifest content, describing the topic of the study. The data analysis then evolved in an iterative process until consensus was reached.

The study was approved by the Regional Ethical Committee in Lund (2014/59).

Findings

The participants expressed that they constantly were striving to maintain control over their life. The overarching theme ‘Striving for control while being in the disease’ emerged, explaining the essence of the participants’ experiences in relation to their everyday occupational possibilities and needs. The disease constantly affected their lives. Practical and emotional demands from the patient and from others were constantly forced upon them, and they perceived that their needs were more or less invisible. They constantly struggled with finding and using coping strategies to handle their situation. Some responsibilities could have been handed over to others, if someone had been there to receive it, however, in particular the responsibility for the children were solely upon them. The family members often felt that the health care services abandoned them, leaving too much of caring responsibilities to them, more and less taking it for granted. From the main theme, two categories and four subcategories emerged, see Table 1.

Table 1. Main theme, categories and subcategories.

Main theme	Striving for control while being in the disease
Category	Changing roles and occupations in the family	Handling emotions in the end of life
Sub-category	Taking on caregiver duties	Feeling lonely
	Denying one’s own needs	Being under constant stress

The main theme comprises two categories: Changing roles and occupations in the family and Handling emotions in the end of life.

Changing roles and occupations in the family

The family members had to adapt to a life situation that could change from day to day, and they constantly had to take on new roles. At the same time, they had to leave valued occupations they did for themselves, because there was no time for them any longer. Also the children had to adapt their activities to the circumstances at home. This category involves two subcategories: Taking on caregiver duties and Denying one's owns needs.

Taking on caregiver duties

The family members expressed that they have had to change their occupations as a response to the changing life situation. The interpersonal relations and roles in the family changed and most often, they had to abandon valued roles and occupations and instead take on others that were forced upon them. They cut down on work and school just in order to more or less involuntarily take care of the patient. The role of caregiver was demanding both physically and emotionally, and they had to do things that they were not comfortable with, such as medical tasks and taking care of the patient’s hygiene. Their burden increased gradually as the patient’s health deteriorated, and they struggled to keep a normal everyday life. In the end it was not possible. Several of the patients did not want help from the healthcare services; instead they wanted the family member to do all the domestic and personal tasks in the home, putting a lot of strain and burden on them:

‘I have worked some hours, what I feel have been extremely hard is that, hm. the healthcare claim that I should be at home more taking care of Pete’.

Denying one’s own needs

As the disease worsened, the family members restrained their own needs in favor of the patient’s needs. The family members described that they became more and more isolated in the home and here was no time for recreational activities since many now had the sole responsibility for maintaining the household. Some were not able to leave the patient, while the ones who could did not have the energy to do something for themselves:

‘I didn't do anything, I was exhausted all the time, between not getting enough sleep and taking care of John there was no energy left to do anything just for me or even just see your friends’.

The family members were often deprived of sleep because they worried about the total life situation, and they were on alert so that they should hear if something happened to the patient during the night. One described it as sleeping with one eye open. They also worried about how the patient was going to get by when they were left alone in the house. Some of the family members felt like they were invisible to others and that it was only the needs of the patient that mattered. They met no understanding of their own needs, but at the same time they felt guilty for not always wanting to be at home instead of going to work or seeing friends. The help and support offered from the healthcare services was not enough, with too many gaps between the help offered and their own needs:

‘Everything is a struggle, there are so many gaps and it's up to us, the family members, to fill them, there’s a lot of responsibilities on us’.

Since health care staff came and went all the time, there were less personal space and loss of privacy.

Handling emotions in the end of life

This category comprises aspects of stress, pressure and ways of handling life and the upcoming death of a loved one. Two subcategories emerged from the findings: Feeling lonely and Being under constant stress

Feeling lonely

The family members experienced feelings of being alone. They had given up activities, friends and work, and they had also lost a companion and an intimate relationship with the patient. Some had a few persons to talk to and share their thoughts with, while others were all alone in this demanding situation. The patient could have a far too positive and unrealistic view of the situation, sometimes due to what they perceived to be dishonest information from the health care staff about the seriousness of the disease. The family members expressed that they didn’t want to discourage the patient and were thus very much left alone to deal with their own emotions. In particular, they did not want to burden their children:

‘you know… you don't want to burden your children, they have enough as it is, so sometimes when it was too much for me, I walked out in the garden and just stood there and cried….’.

The family members sometimes didn’t recognize their loved one, and some behaviors were very hard to cope with. They also felt that they even before death had already lost their loved one:

‘It's years since Pete got ill, but besides that it feels like it´s a long time since I had him here with me, as the man I knew’.

The healthcare service system was inflexible and rigid, and the family members lacked information about the disease, the prognosis and treatment alternatives. On the other hand, some of them also received support from the healthcare services, especially from the advanced palliative home care teams who provided a security at any time. Sometimes the family members understood before the patient that there was no way out of the disease, adding to the feelings of loneliness. Even though they described the feeling of already having lost their loved one it was a both a chock and a relief when they finally passed away. The family member had been more or less totally occupied and bound to the patient, and afterwards they felt an emptiness they were not prepared for. They were also left on their own with the grief, as the palliative care teams stopped coming and no-one called just to see how they were doing.

Being under constant stress

The family members expressed feeling a constant stress that showed itself in many situations. One felt that her husband could not see how much of a burden he was during the illness. Even though the family members were at home more or less all the time they were under constant stress from everything surrounding the patient. The family members felt stressed, not only due to the pressure from the health care and social services but also from friends and relatives who had high expectations on them to be there and take care of their ill family member between the visits from the different care teams. They felt that friends and family didn’t really understand the stress and pressure that they were going through and made them feel guilty if they wanted to do something outside home.

Preparing and taking care of the children’s reactions to losing a parent and in the meantime take care of their daily needs was an emotional struggle, and sometimes the children’s need came in second hand due to the ill parent’s needs:

‘it got a little isolated for the children, they could ask if they could play with friends and I said no, daddy is not having a good day today, it was nice for him to go to school because that was normal nothing else was normal, he was angry, angry at the cancer angry with his dad, he was probably a little angry at everybody’.

Discussion

The everyday lives of the family members in this study were considerably affected by the patient’s disease. They tried to maintain a somewhat normal life but it was in the end an impossible task. New roles were more or less forced upon them, and due to lack of energy and time had to leave other highly valued and meaningful occupations and roles. They were under constant emotional press and felt lonely and isolated with very few or no one to talk to. Their own needs, and the needs of the rest of the family had to be set aside and their occupational balance seems to have been considerably affected in a negative way.

To our knowledge, the present study is the first to explore occupational balance, needs and roles among family members to patients in palliative care in Sweden. Our findings will be discussed in relation to previous research that might support the results.

An important finding was the expectations upon the family members to leave valued roles and occupations and to take on roles forced upon them. In particular, the role of informal caregiver took over other important roles. Losing roles means losing identity, self-esteem and structure in everyday life, and the new roles may instead lead to feelings of insecurity, inadequacy [33], and ultimately, lack of balance in occupations [27], Moreover, since occupations are influenced by the context in which people live [33], the changes in the physical, psychological and social environment as a result of the needs of the patient affect the occupations possible to perform.

In this study, the family members’ occupational imbalance was in particular caused by the fact that they could not themselves maintain control over their roles and occupations, instead other people’s expectations were put in front. Role change is complex, and taking on an informal caregiver role that does not have clear attributes and expectations of what the role means can put a lot of pressure on that person [33]. Research has demonstrated that realistic demands from others have a positive impact on occupational balance [27], and being able to have some time for one self is of importance to be able to adapt and accept one’s new role [4,8]. Instead, in our study, friends, relatives and health care professionals expected the family members to take the role of caregiver and to leave other valued roles. Healthcare professionals tend to place an unspoken burden on family members to be an informal caregiver [8–10], and in that way not allowing them to be just a wife, child or a close friend.

Informal caregivers require considerable support in order to feel confident and safe, and to say no to other peoples’ expectations on them [2,8,14,17,21]. Having responsibility for someone over a long period of time is exhausting [2,3,14,17,18], but family members rarely speak out loud about their own needs and wishes [8,10,18] even if they would benefit from it [4]. Instead, as illustrated by the findings in this study, they put their own needs and desires on hold. This can lead to depression, anxiety and make the family members feel even more insufficient [8]. Accordingly, there is a need for guidance and support to develop strategies to keep meaningful roles and occupations and avoid occupational imbalance [26,33], thereby increasing self-efficacy and in the end also motivation [33]. Most importantly, there is a need to consider the family member as a person in need of care by her/himself and not only considered being a staff member among many, as often put forward [6].

Methodological considerations

Our aim was to include eight family members, however, due to lack of time, energy and motivation only six had the possibility to participate in the interviews. Several reminders were sent to the recruiting occupational therapist and nurses, with no result. This of course limits the findings. However, the family members finally included varied in e.g. age, gender and relation to the patient, thus giving the study a broad perspective related to different life situations. Moreover, the open questions used in the interviews resulted in rich narrations regarding the family members’ life situations, and those included to a large extent shared similar stories and experiences.

When it comes to the trustworthiness of the findings, the first author’s pre-understanding of palliative care could have affected the way the data was analyzed, as it is not always possible to set your pre-understanding aside [32]. However, to avoid this the second author, a senior researcher without experience from palliative care, was involved throughout the entire process while the findings emerged [34]. Thus, potential misinterpretations were minimized, and the trustworthiness of the study enhanced. Trustworthiness of the findings was also improved by the presentation of representative quotes from the transcribed interviews and by the fact that the analysis process was carefully described [32].

Ethics

The family members were in a very vulnerable situation, having lost or anticipated losing a loved one in the near future. Participating in an interview can in such situations be both a relief and a challenge. The first author, who also made all the interviews, is an occupational therapist with extensive experience from working with specialized palliative care teams. She could therefore adjust the interview situation to the needs of the family members. It is of importance that the interviewer is aware of the fact that interviews can raise emotional issues and distress; therefore the family members also received contact information to both authors in case they had any questions after the interview. The family members also received information that if they needed more support they could be referred to professional counselors. To our knowledge, no support was requested.

Conclusion

To conclude, we found that being a family member to a person in palliative care changes roles and can cause occupational imbalance. To a large extent it affects daily routines, habits and everyday occupations, and may even lead to ill health. The findings may suggest that family members could benefit from strategies to maintain valued roles and occupations. The Swedish healthcare system currently seems to neglect the needs of the family members, just taking the patient into consideration. Accordingly, developing new ways to organize the provision of palliative care that also takes the family members into consideration, as well as their occupational needs might help to close these gaps.

Acknowledgements

Sincere thanks are extended to the family members in this study, for taking their time and effort to participate. Thanks also to the different colleagues who helped with the recruitment.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study received financial support from the Vårdakademin at Skåne University Hospital. The authors are also grateful to the Department of Neurology and Rehabilitation Medicine at Skåne University Hospital in Lund for providing time resources to the project.