Bereavement concepts in children’s palliative careIntroductionThe death of a loved one is a natural human occurrence. Death is one of the most devastating events in life, overwhelming emotions like anxiety, hopelessness, and sorrow can be felt (Fraley and Bonanno, 2004) and it occurs at any stage and phase in the development of family (Walsh and McGoldrick, 2013). However, not everyone is the same. Some people shows no effect of grief or loss (Bonanno and Kaltman, 1999) or it can bring about dips on the health condition or worst even causing fatalities (Owen et al., 1985). Bereavement is different to every individual. The purpose of this assignment is to look at bereavement, grief and loss in the context of the concept of ‘continuing bonds’ in children’s palliative/ complex care, a case study from clinical experience will be included as a form of illustration. Continuing Bonds in Children’s Palliative CareThere are many theories of grief like, systems theory which focuses in the close relationship of family in overcoming grief (Bowen, 2018). Kübler- Ross Model of grief originally describing the grieving stages of terminally ill patients (Doughty, Wissel and Glorfield, 2011). Attachment theory of Bowlby, who said that there are four distinct features of attachment: Proximity Maintenance – the desire to belong, to be around the attachment. Safe Haven- attachment to the place of refuge in dangerous or complicated situations. Secure Base- The attachment figure acts as an anchor of security. Separation Distress- apprehension of being away from attachment. The theory argues that attachment patterns in life may affect how a person cope with grief following separation (Holmes, 1993). Worden: Tasks of mourning, indicates that mourning will take time and with four tasks- acceptance of the loss, deal with the pain and grief, reorientation of the new environment with the loss, move on with life(Worden, 2009). Dual process is a fluctuation between adaptation to loss and rebuilding life (Stroebe and Schut, 2010). Rando’s six R process of mourning- includes avoidance phase, the confrontation phase, and the accommodation phase and each phase has “R” task. Recognize the loss (avoidance phase): acceptance of death. React to the separation (confrontation phase): this process dealing with emotions to the loss. Recollect and re-experience the deceased and the relationship (confrontation phase): means the necessity for reminiscing the deceased. Relinquish old attachments to the deceased (confrontation phase). Readjust to new environment without failing to remember the old one (accommodation phase). Reinvest-diverting attention to new people, ambitions and so on ( accommodation phase) (Rando, 2014). As a nurse in children’s palliative care setting, understanding these theoretical perspectives is essential as nurses are usually the care provider that is there during end of life and death and therefore has the responsibility in giving support to families and other family relations. Nurses must provide assistance while considering the dynamic of the family unit and foster optimism if needed and possible. Good communication skill is very much needed (Hill and Coyne, 2012).Case StudyIt was a quiet night shift. Two nurses and a health care assistant were working. All clients were in bed and starting to fall asleep. As the health care staff start to do notes, the phone rang. The voice on the other side was cracking, sounded as if crying a lot. The nurse probe more, asked the identity of the caller? The voice said, “I am Ellen (not true name), mum of Patty (not true name), who passed away recently. I rang as I cannot sleep. I miss my daughter terribly. Would it be ok to visit there tomorrow? As I feel her presence is there and it will make me feel better.” The nurse was taken aback, but eventually agreed as she remembered the family. They were very nice family. Patty, their daughter, is a 12-year-old girl, who passed away with osteosarcoma. She was very sweet and a pleasure to look after. Continuing Bond (CB) is described as a concept of keeping connection that parents and siblings experience in their bereavement of a child who died because of life-threatening or life-limiting illness (Foster and Gilmer, 2008), (Rothaupt and Becker, 2007), (Stroebe and Schut, 2005). The illustrated case study above indicated a way for a parent to cope with grief and loss. Maintaining the bond through, keeping in remembrance, the dead child’s life and integrating into parent’s present life may be a way of renewed purpose for parents (Attig, 1996) (Wheeler, 2001). There are conflicting evidences that shows continuing bonds has adaptive and maladaptive results. One of the maladaptive variant according to Field et al 2003 is that, continuing bonds can be felt through some imaginary feeling of presence of the deceased due to the continued search for the person who passed away, as well as, keeping in the same place the deceased possessions as before death, may be perceived as an expression, wishing the deceased will come back, or wanting to visit places where they used to go as illustrated in the above story of Patricia and her mom. However, these phases should be gone in a certain period (Field, Gal-Oz and Bonanno, 2003). “From an attachment perspective according to Bowlby, resolution of mourning is marked by termination of search behaviour in recognizing the impossibility of ‘‘finding’’ the lost figure and reorientation to everyday life and its tasks “(Field, 2006) p742. Evidence also established that that focus of continuing bonds upon parents holding on to their dead child’s relationship is opposite to society’s and some health care professionals’ notion that parents should get over and move on from the incident. It was also found that there is a need for the parents to integrate the essence and effect of their late child’s life to their life inferring comfort from holding on to anything that identify with their child (Davies, 2004). Nonetheless, Stroebe and Schut concluded that it has become obvious from the available literature like, continuing bonds have a good result such as those survivors who find sense of the loss meaningfully have less complications in grief (Neimeyer, Baldwin and Gillies, 2006), and that the bonds were formed through symbolism, from stories of parents, from feelings in relation to loss and the individual’s own sibling perception (Cameron Meyer and Carlton-Ford, 2017) that some variants of continuing-relinquishing bond may be advantageous or disadvantageous to grieving individual. (Stroebe and Schut, 2005) . Nevertheless, Foster in 2008 established through his research on continuing bonds focusing on paediatric palliative care that there is lack of understanding about continuing bond as bereavement concept with insufficient study on the bereavement in Children Palliative(Foster and Gilmer, 2008). Although there is lack of evidence on the advantage of continuing bond in bereavement of children and families in Palliative care, health care service providers can offer services or support during grieving period (Foster et al., 2011) . Children Palliative Care role in BereavementIn Paediatric Palliative Care history, focus on quality of life and bereavement care usually shifts at end-of-life due to the ideology that young people with life-threatening or life-limiting illness is to be cured from the disease rather than to alleviate the suffering. Bereavement care’s focal point is on how an individual or family go through grief and its impact on them, which is apparent during the child’s disease trajectory before end of life (anticipatory grief) and post death of the child (Kang et al., 2005) (Zimmermann et al., 2016). While, adult palliative care focuses more on symptom control to improve quality of life from time that the diagnosis was made and bereavement care is provided throughout the disease process and after death of an individual (World Health Organisation, 2018). How is bereavement defined? Bereavement is the condition of having lost someone loved (Owen et al., 1985) (Stroebe, Stroebe and Hansson, 1993) (The Irish Childhood Bereavement Network, 2017), grief is the psychological or emotional experience of bereavement, and mourning denotes the actual expression of grief, which can be seen in mourning practices like in funeral ceremonies or ceasing to participate in activities in community (Stroebe, Stroebe and Hansson, 1993). In 2014 according to a report, Ireland has “396 deaths in those aged under 20 years old, from which 346 were due to non- accidental causes. Official statistics do not record cause of death according to the ACT categories. Notably, deaths in the first year of life, constituted nearly two thirds of deaths in children”(Jordan and Fullerton, 2016) p15. In 1995, palliative medicine became a specialty in medicine followed by the development of paediatric palliative care (Hill and Coyne, 2012). The development of children’s palliative care in UK and Ireland has evolved as evidenced by the summary report on Evaluation of the children’s palliative care programme (DoHC, HSE, Irish Hospice Foundation 2016). Over the 7 years, basing on the 2009 National Policy for Palliative Care for Children with life-limiting conditions, Ireland has been providing palliative care to children through hospital-based paediatric care, in collaboration with community adult palliative care teams. Multi-disciplinary teams may be involved, depending on child’s condition, with the GP as the primary health care provider and end of life care in community is being provided by the existing health care professionals in home care teams. Care also may include home care package and services for mainstream education. However, it was identified in the report that there is lack of accessible and uniform bereavement care thereby support to bereaved families is not sufficient. Although, it also stated that Community Outreach Nurse service has made improvement in bereavement care service by organizing memorial services in hospital and providing bereavement literature on bereaved families despite heavy workload (Jordan and Fullerton, 2016). Bereavement care and follow-up are of significance value in children’s palliative care. Family and friends who are bereaved need an accessible and suitable bereavement support. In 2012, Irish Childhood Bereavement Network was launched. It is a hub for professionals working with children, young people and their families who are in the process of bereavement in Ireland. This is a great initiative from Irish Hospice Foundation and Family Support agency where clinicians can get bereavement information, guidance and support services that is appropriate to children, young people, and their families. Use knowledge and expertise to share with other professionals thus improving delivery of better bereavement service (The Irish Hospice Foundation, 2012).Bereavement Services in IrelandA 2017 report was published by Senator O’ Donnel, Dying Death and Bereavement: an examination of State Services in Ireland. This report evaluated how the State shows support to its constituents pre and post death and made recommendations accordingly. The report indicates that there is provision of counselling services to the bereaved –directly by Tusla or commissioned by Tusla. It further states that a funding was given to Rainbows Ireland to support bereaved children. The National Strategy on Children and Young People’s Participation in Decision- Making (2015-2020) includes commitment across the departments and agencies in the government to consider the voice of children and young people appropriately in policy development, making laws, research studies and service provision. This will also be applied in the area of dying, death and bereavement (Donnell, 2017). “A child provided with appropriate counselling may not require more expensive intervention at a later stage in their life. Early intervention will also ensure that their life chances are not compromised”(Donnell, 2017) p 52.In acknowledging the key role of parents in their children’s development, support during bereavement are also in place through state-funded organization like Anam Cara and Rainbows. It is also vital to put in place other supports which could range from the availability of state-funded bereavement books, to support groups, to counselling services to empower bereaved families to manage their own grief (Donnell, 2017). Nevertheless a recent report in 2018, Enhancing adult bereavement care across Ireland : A study published by Irish Hospice Foundation, stated that apart from having no national strategy there is also no national data base of organizations in bereavement care provision, instead it is provided locally by charitable institutions, voluntary organization, HSE mental health services, primary care counsellors and practitioners in private sector, depending on how and where the death happened. The main reason for bereavement support is, many times, facing loss and this initiated the formation of local support in every area. “In Ireland, bereavement interventions are one-to-one meeting, group therapy, information evenings, remembrance events, activity weekends, home visiting, information giving and signposting” (Mcloughlin, 2018) p18.In Children’s Hospice care setting , we have a bereavement team compose of social worker, chaplain, psychologist and memory making team that offers bereavement support to grieving families, organize memory making activities using artwork or facilitating mini- trips according to the child and family’s health state and wish- to initiate continuing bonds and annual memorial service. However, choice should be given to family members who do not wish to participate and provide good communication about continuing bond that it is not mandatory for every one or that it helps in anyway. These families should not feel pressured and possible guilt should be considered if they do not wish to maintain connections with the person who passed away (Foster et al., 2011).ConclusionBereavement in children palliative care is a long painful process. Loss and grief happen several times during the disease trajectory. Every stage of this situation, requires strength for the parents or caregiver to assume different roles in provision of varied care and continuing the bond after the death of a child in palliative care service may or may not help in the process of bereavement. Although, there is lack of standardized and accessible bereavement care services in Ireland, health care professionals like community outreach nurses are trying to make improvement in this area, hence health care providers need to be educated more about the bereavement policies, guidelines and strategies and to do more research and studies in the field of bereavement, for future developments in wider perspective and to provide better if not excellent support to families especially in these trying times.
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