The experience of bereavement on family caregivers of people with dementia in China

Introduction

Grief is a natural emotional reaction that people experience after losing their loved ones. As a major negative event, caring for a person with dementia not only causes serious physical and psychological trauma to individuals, but studies also show that caregivers perceive high levels of distressing experiences after the death of the person (Meichsner & Wilz, 2017; Shah et al., 2010; Shanley et al., 2011; Vlachogianni et al., 2016). However, caregiver grief may not be recognized as a personal grieving reaction by caregivers themselves or they may not be allowed to grieve openly (Noyes et al., 2010). Consequently, a caregiver may tend to deny problems or withhold himself or herself from society.

Furthermore, cessation of caring may be experienced as a loss of the role as a caregiver, in which grief is a normal complex psychological and emotional reaction occurring in response to the significance of this loss (Chan et al., 2013; Peacock et al., 2014). The grief of loss may be complicated, it is recognized that grief occurs in response to a personal loss, and the way in which that grief will be expressed depends on individual characteristics, situations and cultural factors of each caregiver (Noyes et al., 2010). This grief of loss happens especially to caregiver spouses of persons with dementia, who may suffer from a negative bereavement experience and therefore be more likely to withdraw from their social network and from support (Meichsner & Wilz, 2017); we find that those social networks are already diminished as a result of caring for someone with dementia, and are more likely to experience depression and grief than other family member caregivers (O’shaughnessy et al., 2010).

The 11th International Classification of Diseases suggests that if someone who continually experiences psychological problems, such as depression, anxiety and suicidal thoughts, which cause their life functional problems for more than 6 months after bereavement, early intervention is needed to support the person through their grief and improve resilience. In a study in the United States, Jones (2010) demonstrated that compared with other types of diseases, over 50% of additional bereavement services are needed for caregivers after the death of people with Alzheimer’s, lung cancer and renal failure. A longitudinal cohort study with family caregivers' experiences of end of life of people with advanced dementia in the United Kingdom indicated that helping families understand dementia progression and preparing for their end of life can reduce family caregivers’ psychological distress (Moor et al., 2017). Therefore, better understanding of caregivers’ psychological experiences and how they adjust to loss and grief has important clinical and political implications.

With the ageing population in China, the demand for hospice care is high. However, there is a shortage of hospice care services, health professional providers and related research in China (Ning, 2019). A study in China about community healthcare providers’ knowledge and attitudes toward end-of-life care shows that 90.9% disclosed that they did not receive extensive training on how to care for dying patients and their families (Shi et al., 2019). It also indicates that there is a lack of foundational education for end-of-life care in undergraduate nursing and medicine in China (Shi et al., 2019). Currently, there are more than 10 million people with dementia in China. The majority are looked after at their own home by their family members due to the traditional culture that looking after older parents is a responsibility of the family’s and individual relatives’, along with the fact that there is no national health insurance program to cover the cost of older care services for the older population. Consequently, most Chinese family caregivers may be alone when facing the physical and psychological challenges which are caused by the death of their loved one and the post-death period. Furthermore, prolonging the life of a loved one is often seen as filial in the Chinese culture, so family members are more likely to do this at all costs. This cultural means children feel a deep sense of duty to ensure that their parents keep living, such as persisting with medical treatments even when it may be kinder to the parent to provide palliative care rather than active treatment. This may result in negative issues, such as financial burden and psychological stress or suffering for the patient (Ng et al., 2016; Zhang et al., 2019a). Therefore, the question of how to best support this increasing number of individuals is very important. However, at present, there is a lack of studies in China on family caregivers’ physical and mental experiences of bereavement. This study aims to understand their perceived experience of bereavement and to inform end-of-life care within communities in China.

Method

Participant recruitment and data collection

The participants were recruited from one community health centre in a central small city in China. They were identified from the next of kin contact list of people with dementia who were registered in the health centre. 20 former family caregivers were identified and initial phone calls were made to ask whether they are interested in participating in the study. There were eight who responded, and further, face-to-face meetings were held to give details on the study and informed consent forms were signed. The snow-balling method was also used to increase the number of recruitments. During the meeting, all of the participants were asked to introduce anyone they knew who had the same experience of bereavement of someone with dementia. The sample inclusion criteria were as follows: people who had more than 6 months of caring experience of a family member with dementia, aged 18 years or more and bereaved no more than 2 years previously. Family members who were interested in the research received an invitation letter to attend a meeting to talk about the research and a consent letter was signed during the meeting.

Semi-structured in-depth interviews were used to collect data. The interview was conducted in the participants’ home or their preferred place by the first and third author (a master’s student was an assistant). The interview questions covered a series of domains that had been selected based on the research questions. It began with ‘Can you talk about xx (the person who has been looked after)? How do you feel about these months after she/he passed away?’ Such open-ended questions allow the family caregivers to express their feelings without direct and specific prompting. The interviews lasted 40–60 min without a break. During the interview, the interviewer encouraged the participants to express their feeling through careful listening, prompting questions and repetition. Two postgraduate students (the third author and another master student) were trained by attending the ‘how to do a research interview’ seminar at Lanzhou University by the first author; the seminar was guided by Turner’s (2010) study of ‘Qualitative interview design: a practical guide for novice investigators’. During the interviewing, with any emotional response, the interviewers gave options for the participants to take a break, stop the interview or take other further actions, such as talking to a consultant or psychological therapy. Interviews were recorded with a digital recorder for transcription later.

Data analysis

Thematic analysis was used to make sense of the interview data by identifying, analysing and interpreting patterns of meaning (‘themes’) of the participants’ experiences (Braun & Clarke, 2006). As the characteristic of thematic analyses is its flexibility, it provides opportunities for research to make active choices about the particular form of analysis they use, in order to gain a rich and detailed, complex, account of data (Braun & Clarke, 2014). In this study, thematic analysis was underpinned by the philosophical and conceptual assumptions of IPA. The procedure of analysis was focused on making sense of bereavement (phenomenon) through explaining and interpreting (hermeneutics) the detailed, individual narrative (idiography).

Braun and Clarke’s (2006) six steps of analysis was used: (a) Familiarizing with data through transcribing data, reading and re-reading the data and noting down initial ideas. (b) Generating initial codes by coding some interesting features of the data and then collating relevant data to code. (c) Collating codes into potential themes. (d) Reviewing themes by generating a thematic ‘map’ of the analysis to ensure the connection of the themes. (e) On-going analysis to refine and define the overall themes of all the data. (f) Selection of extracts and final analysis of selected extracts to produce the report. In qualitative research, it is very important to critically analyse how one’s epistemological and ontological assumptions influence the data analysis and the research as a whole (Mauthner & Doucet, 2003). Therefore, throughout the process of the study, we always considered how our position influences the research, from planning the research to writing up the article. As the first author, I considered how my background as a nurse and Chinese female researcher influences the interactions with the participants, and interpreting the data. It is also very important to consider how authors’ ‘cultural intuition’ influences the process of analysis (Hogarth, 2010). To avoid these, the process of analysis involves constant back and forth checking between the entire data set to review each case in detail after a closer examination, to ensure the quality of the analysis as well as an agreement between all. Plus, asking ‘whether the findings of an inquiry are worth paying attention to, or worth taking account of? Thus, detailed shared meanings and experiences of bereaved family caregivers with dementia can be gained.

Findings

Twelve family caregivers were interviewed: eight were recruited within the health centre; four were introduced by the participants from the health centre (snow-balling approach). The participants’ ages ranged from 29 to 73 years old, with 10 women, two men and they were all local Chinese. There were 10 partners and two children. The average time since bereavement was 14 months (ranging from 2 months to 2 years). Among the participants, there were six family caregivers who were educated at a junior high school level, three who graduated from high school, two who graduated from college and one from university.

The participants perceived a wide range of experiences. Some of these involved specific emotions and activities, which were associated with their loss of the role of a caregiver. Other experiences related to the lack of personal and social resources or need for psychological and physical support. Themes that emerged from the data that had a more specific focus on the experience of bereavement were as follows:

Recalling the past

Discussion

Grief is an emotion that every bereaved person will experience. Although death is predictable for the later stages of people with dementia, the family caregivers will still have different degrees of grief. Generally, most will gradually recover over time, but for some individuals, the process is not as smooth (Shear et al., 2013). Most of the participants in this study indicated that grief was an important issue and this is well supported in the Western literature. During the time after the death of their loved one, the emotional reactions of family members were transformed from grief to acceptance, and some psychological preparations, such as early discussion with other family members about death arrangements (death at home or hospital), alleviated the sadness to some extent. This is consistent with some Western research results of Shanley et al. (2011) and others (e.g. MacCourt et al., 2017).

In this study, most of the bereaved family caregivers reacted with normal grief, and only Participant H showed a more obvious prolonged period of grief. Participant H had a teaching job while she looked after her mother, so she could not take full care of her mother, as she need the income to support her family. In this case, the conflict between care responsibility and the financial burden of family caregivers in China is reflected. A United States study indicates that when bereaved family caregivers have prolonged symptoms of sadness, it can lead to a series of physical and psychological symptoms such as depression and fatigue, which seriously affect the quality of life of the bereaved (Houwen et al., 2010). Therefore, in dementia end-of-life care, we must not only pay attention to the physical and mental conditions of people with dementia but also to the condition of the family caregivers during this period of grief and provide physical, psychological and social support.

It is also important to provide appropriate education about death and dying to help patients’ families respond correctly to negative emotions. In this study, eight bereaved people regretted that they could not provide proper care and companionship for patients at the end. Reasonable care is often based on understanding the physiological and psychological characteristics of dying patients and effective communication can be implemented. However, most of the participants in this study had no knowledge of dementia and little knowledge of how to manage behavioural problems at the end-of-life stage of their loved one’s life. This is consistent with the study by Zhang et al. (2019a). There are few support services available for people who are cared for at their own home in China unless the person with dementia is spending the time at the end of their life at hospital and dying there (Zhang et al., 2019b). Therefore, this study recommends that community nurses should provide appropriate death education for the family members on end-of-life care with dementia. They should introduce some symptoms and corresponding treatment measures that the people with dementia often have in the end-stage period and inform the family caregivers of the person with dementia’s condition changing over time to prepare them mentally and to arrange the funeral. Providing opportunities for family members to say goodbye to patients is also a way for family caregivers to accept the reality of what has happened to their loved one. At the same time, nurses should guide family members to communicate effectively, talk about death correctly, understand the person’s wishes and help them fulfil their needs.

Although many of the factors associated with grief are well supported in Western literature, many studies in this area have tended to focus on burden and the impact of individual characteristics, issues or experiences (Blandin & Pepin, 2015). In Chinese culture, family members tend to pay more attention to how to prolong the life of their loved one, and mistakenly regard this as filial piety. This study has considered the importance of cultural factors in the caregiving experience, for example, both Participants F and H regretted not being filial to their parents. The right decision of family caregivers may determine the quality of life in the final stages of death of people with dementia. Affected by the family-based thinking in Chinese traditional culture, the attitudes and opinions of family members still dominate in the decision-making of treatment and care for the person with dementia’s family rather than health professionals. Therefore, a culturally appropriate intervention aimed at supporting caregivers of people with dementia, especially in the period of ‘life after care’, is needed. It also suggests that more complex and comprehensive research to understand how the cultural context impacts on family caregivers’ behaviour and well-being is also needed.

A few family caregivers expressed their regret that they made medical decisions for their loved one to live longer but suffer more. For example, Participant D thinks that sending his dad to hospital for a tube insertion made him suffer more than it did in prolonging his living time. In contrast, Participant C wished her husband to pass sooner rather than letting him suffer. With this variety of perspectives of stress when watching a loved one die, end-of-life education can help family caregivers to establish a more subtle view of life, pay attention to the quality of life of the person with dementia and make correct treatment decisions for their loved one, for example, letting the person with dementia complete the final stage of life without pain. This way, family members will not have negative emotions such as regret and self-blame after their death.

Providing comprehensive support to help those bereaved reintegrate into society is important. In this study, the bereaved participants experienced emotional loneliness and helplessness and confusion about future life, and some even had social withdrawal, which are consistent with the findings of Chan et al. (2013). A study in Canada found that the experience of caring for patients together with nurses has left a deep impression on bereaved people, who are able to tell their feelings to a familiar nurse (MacCourt et al., 2017). Therefore, the community nurse should keep in touch with the patient's family and pay attention to the emotions of the family caregivers and support them after the death of their loved one. The community nurses should also take responsibility to encourage the family caregivers to express their feelings and actively listen to their feelings. This research also recommends that community nurses keep abreast of the current situation of bereaved people, help them accept the facts of their loved ones, plan their future life, re-establish life goals and re-enter society. In China, because the care of older people with dementia is the family’s and individual’s responsibility, the connection and relationship between family caregivers and health professionals is very weak. This research recommends that the healthcare approach should be changed, and family caregivers should be treated as a type of ‘client’ of hospice care. This bereavement care service should be available to family caregivers throughout the whole process of hospice care.

This study uses qualitative research methods to explore in depth the characteristics and the meaning of the sad experience of bereavement for family members of people with dementia and provides a basis for developing effective grief care. The research identified the significance of death education, as found in hospice care, and hopes to promote the development of hospice care work for both people with dementia and their family caregivers in China. However, it is only a small study with twelve family caregivers, so the result cannot be generalized to all of the family caregivers, especially in China, which is so diverse, where some minority groups hold different views of death. Therefore, there needs to be more attention paid to cultural perspectives in further research.

Conclusion

Despite the study having explored some specific experiences of bereaved Chinese family members of people with dementia in the traditional culture, there are number of limitations in this study. Firstly, with the small sampling size, the study may not be suitable to be generated to a large population group. Secondly, because this study was collected from a small city, this potentially masks the heterogeneity of residents in big cities. Thirdly, with a varied period of bereavement, the participant’s action may affect the real meaning of their experience, especially with some participants who has only two or 3 months to process the bereavement. This suggests follow-up research after a long period may be needed. This study has identified the need to focus on improving family caregivers’ resilience in China. By providing all-round support and death education, it can help the family caregivers to pass through the grieving process and help them to maintain their normal life. It also suggests that further research on supporting family caregivers to develop culturally sensitive bereavement services that allow relatives to cope better with bereavement is needed.