PALLIATIVE CARE
Giving a voice to the bereaved through palliative care research Brian Nyatanga
Senior Lecturer in Allied Professional Studies and Lead for The Centre for Palliative Care, University of Worcester
© 2014 MA Healthcare Ltd
D
eath has a tendency to trigger different reactions, one of which is the expression of grief by bereaved relatives, friends and colleagues. Very often, the bereaved are considered a vulnerable group. As a result, the research community is not always keen to undertake research on them (Crowther and Lloyd-Williams, 2012). While this may be explained and justified as caring or protecting the bereaved, it may also deny them a voice. In the absence of a real voice, therapists, counsellors and educationalists have tended to rely on theoretical constructs they believe are most effective and enable the bereaved to adjust and ‘move on’ with their lives. The constructs focus on different outcomes to be achieved by the bereaved. For example, Freud (1917) advocated and propagated the idea that the bereaved should emotionally ‘let go’ of the dead person before they can carry on with their life, and invest their energies in other people.Worden (1982) recommended that the bereaved should be encouraged to ‘work through’ the pain of grief in order to adjust to life without the dead person. One worrying thing with most constructs—including the two highlighted here—is that grief and bereavement are seen as pathology, and therefore require treatment or intervention.What is often missed or not discussed is that grief and bereavement are in fact normal reactions to a death of someone close to whom we have had an emotional attachment and love.To view grief as pathological is to deny its normality and consequently limits our understanding of the needs of the bereaved. Furthermore, as we grow to know someone, we tend to build close relationships (attachment bonds) that are more deeply held the closer (emotionally) we get with the other person. Attachment bonds suggest deep affection for the other person, and children often develop such bonds with parents as they grow up. Adults may widen their scope of attachment as they meet different people, but what is crucial to suggest here is that the closer the relationship is emotionally, the deeper the affectionate bonds between those in the relationship. It therefore follows that when someone close dies, the pain experienced is equally intense. The argument here is whether such pain (grief) should be viewed as an illness and requires therapeutic intervention. The bereaved find themselves being referred to counsellors and therapists, yet what they are doing is going through a normal reaction (sadness, crying, shock, feelings of loneliness and emptiness) to a very painful experience of ‘breaking’ the attachment bond. The caricature captured above may explain why the bereaved are viewed as vulnerable and therefore denied the opportunity to take part in research studies. This view could British Journal of Community Nursing August 2014 Vol 19, No 8
Email: [email protected]
be argued as paternalistic, denying the bereaved a voice. The pragmatic way forward is to give them a voice and, with that, strike a balance and minimise any distress from the process. Giving them a voice means our interventions (if needed) are targeted and responding to identified needs. A study by Crowther and Lloyd-Williams (2012) showed that the 41 bereaved interviewed for the study (32 female, 9 male) aged between 18 and 86 years, and from varied socio-cultural backgrounds, wanted to be heard. Although it may be emotionally difficult to be asked to recall the dead person’s life in an interview with researchers, they still felt it was helpful for them to share their experiences. The bereaved also strongly believed that sharing their experiences might benefit others in the future (Crowther and Lloyd-Williams, 2012). Studies such as these help to dispel the myth that undertaking research with the bereaved is burdensome. Instead the bereaved like to be heard and to share their experiences— even the painful ones. It can be argued that by sharing experiences, the bereaved also help themselves find inner peace and carry on with their lives. However, for such studies to succeed, a shift in attitudes is required from ethics committees in regarding these studies as doing good rather than harm to the bereaved. Indeed, they are often conducted sensitively at appropriate times for those experiencing grief. It is also important that further research is encouraged not only with bereaved people but with all vulnerable and marginalised groups in society who may require palliative care. With bereaved people we need to understand how they feel about becoming a carer, how they deal with requests by loved ones to die at home when they may not be comfortable with this view, and the impact of having numerous health professionals visiting the patient at home. At times the family home is turned into a mini palliative care ward/unit, and we need to understand any impact that this may have on the bereaved. There are many more questions that need answering, but we can start by giving the bereaved a real voice through their participation in research studies. Denying them a voice can only be projecting our own fears and prejudices onto the bereaved, and this is where a reality check is necessary through introspection, so that we may put the wishes of the patients and the bereaved first. BJCN Crowther J, Lloyd-Williams M (2012) Researching sensitive and emotive topics: the participant’s voice. Res Ethics 8(4). 200–11. doi: 10.1177/1747016112455887 Freud S (1917) Morning and melancholia. In: Strachey J (ed), The Standard Edition of the Complete Psychological Works of Sigmund Freud,Vol. 14. Hogarth, London Worden WJ (1982) Grief counselling and grief therapy: a handbook for the mental health practitioner. Springer, New York
411 © MA Healthcare Ltd. Downloaded from magonlinelibrary.com by 203.029.107.054 on September 24, 2017. Use for licensed purposes only. No other uses without permission. All rights reserved.
Giving a voice to the bereaved through palliative care research Brian Nyatanga
Senior Lecturer in Allied Professional Studies and Lead for The Centre for Palliative Care, University of Worcester
© 2014 MA Healthcare Ltd
D
eath has a tendency to trigger different reactions, one of which is the expression of grief by bereaved relatives, friends and colleagues. Very often, the bereaved are considered a vulnerable group. As a result, the research community is not always keen to undertake research on them (Crowther and Lloyd-Williams, 2012). While this may be explained and justified as caring or protecting the bereaved, it may also deny them a voice. In the absence of a real voice, therapists, counsellors and educationalists have tended to rely on theoretical constructs they believe are most effective and enable the bereaved to adjust and ‘move on’ with their lives. The constructs focus on different outcomes to be achieved by the bereaved. For example, Freud (1917) advocated and propagated the idea that the bereaved should emotionally ‘let go’ of the dead person before they can carry on with their life, and invest their energies in other people.Worden (1982) recommended that the bereaved should be encouraged to ‘work through’ the pain of grief in order to adjust to life without the dead person. One worrying thing with most constructs—including the two highlighted here—is that grief and bereavement are seen as pathology, and therefore require treatment or intervention.What is often missed or not discussed is that grief and bereavement are in fact normal reactions to a death of someone close to whom we have had an emotional attachment and love.To view grief as pathological is to deny its normality and consequently limits our understanding of the needs of the bereaved. Furthermore, as we grow to know someone, we tend to build close relationships (attachment bonds) that are more deeply held the closer (emotionally) we get with the other person. Attachment bonds suggest deep affection for the other person, and children often develop such bonds with parents as they grow up. Adults may widen their scope of attachment as they meet different people, but what is crucial to suggest here is that the closer the relationship is emotionally, the deeper the affectionate bonds between those in the relationship. It therefore follows that when someone close dies, the pain experienced is equally intense. The argument here is whether such pain (grief) should be viewed as an illness and requires therapeutic intervention. The bereaved find themselves being referred to counsellors and therapists, yet what they are doing is going through a normal reaction (sadness, crying, shock, feelings of loneliness and emptiness) to a very painful experience of ‘breaking’ the attachment bond. The caricature captured above may explain why the bereaved are viewed as vulnerable and therefore denied the opportunity to take part in research studies. This view could British Journal of Community Nursing August 2014 Vol 19, No 8
Email: [email protected]
be argued as paternalistic, denying the bereaved a voice. The pragmatic way forward is to give them a voice and, with that, strike a balance and minimise any distress from the process. Giving them a voice means our interventions (if needed) are targeted and responding to identified needs. A study by Crowther and Lloyd-Williams (2012) showed that the 41 bereaved interviewed for the study (32 female, 9 male) aged between 18 and 86 years, and from varied socio-cultural backgrounds, wanted to be heard. Although it may be emotionally difficult to be asked to recall the dead person’s life in an interview with researchers, they still felt it was helpful for them to share their experiences. The bereaved also strongly believed that sharing their experiences might benefit others in the future (Crowther and Lloyd-Williams, 2012). Studies such as these help to dispel the myth that undertaking research with the bereaved is burdensome. Instead the bereaved like to be heard and to share their experiences— even the painful ones. It can be argued that by sharing experiences, the bereaved also help themselves find inner peace and carry on with their lives. However, for such studies to succeed, a shift in attitudes is required from ethics committees in regarding these studies as doing good rather than harm to the bereaved. Indeed, they are often conducted sensitively at appropriate times for those experiencing grief. It is also important that further research is encouraged not only with bereaved people but with all vulnerable and marginalised groups in society who may require palliative care. With bereaved people we need to understand how they feel about becoming a carer, how they deal with requests by loved ones to die at home when they may not be comfortable with this view, and the impact of having numerous health professionals visiting the patient at home. At times the family home is turned into a mini palliative care ward/unit, and we need to understand any impact that this may have on the bereaved. There are many more questions that need answering, but we can start by giving the bereaved a real voice through their participation in research studies. Denying them a voice can only be projecting our own fears and prejudices onto the bereaved, and this is where a reality check is necessary through introspection, so that we may put the wishes of the patients and the bereaved first. BJCN Crowther J, Lloyd-Williams M (2012) Researching sensitive and emotive topics: the participant’s voice. Res Ethics 8(4). 200–11. doi: 10.1177/1747016112455887 Freud S (1917) Morning and melancholia. In: Strachey J (ed), The Standard Edition of the Complete Psychological Works of Sigmund Freud,Vol. 14. Hogarth, London Worden WJ (1982) Grief counselling and grief therapy: a handbook for the mental health practitioner. Springer, New York
411 © MA Healthcare Ltd. Downloaded from magonlinelibrary.com by 203.029.107.054 on September 24, 2017. Use for licensed purposes only. No other uses without permission. All rights reserved.
