Providing care to parents dying from cancer with dependent children: Health and social care professionals' experience

Abstract

Objective Parents often feel ill‐equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer. Methods Semi‐structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors. Results HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill‐equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead. Conclusions There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.

‘Don’t Forget the Children’: A Qualitative Study When a Parent Is at End of Life From Cancer

“…A similar nding has been reported in the literature [35]. It may be that telling a parent of dependent children that they were eventually going to die from cancer was too big for HSCPs to 'take on', that a more 'comfortable', less personally emotively demanding position for the professional was engaging in physical care needs [20]. However, HSCPs did not acknowledge that hope centred on treatment would eventually place signi cant demands on the well-parent as death approached at the end.…”

“…Some of the complexities include prognostication being inherently di cult, and the management of patients often complex clinical condition at EOL presiding over the needs of the well-parent and children [21]. Studies highlight insu cient training for HSCPs; therefore, they lack skills, competence and con dence in addressing parents and children's need for support around the time of parental death from cancer [20], with some fearing they could make the situation worse [22]. This is despite national and international end of life guidelines repeatedly acknowledging that families should have honest, sensitive and well-informed conversations about dying, death and bereavement [23].…”

A qualitative study of bereaved relatives’ end of life experiences during the COVID-19 pandemic

“…29,30 It is important that health and social care professionals engage in family-centred conversations with relatives at end of life. 28,31,32 Literature highlights that relatives' desire the opportunity for time with their family member in the final weeks and days of life. 6,10 Alongside this, other studies have reported that providing personal aspects of care or holding a family member's hand has provided comfort and enabled connectedness between relatives and a dying family member at end of life.…”

‘Living in parallel worlds’ – bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

“…3 Challenges that are likely to confront parents throughout this period include a reduced availability for parenting; changes to parental roles; heightened distress as they prepare children for parental death; and, or financial implications. 4,5 One of the intricate and complex challenges faced by parents is how to best prepare and support their children throughout this end of life experience. 5 Children with an understanding of the dying process and are prepared for the death of their parent show quicker adjustment than those not informed.…”

“…3 Challenges that are likely to confront parents throughout this period include a reduced availability for parenting; changes to parental roles; heightened distress as they prepare children for parental death; and, or financial implications. 4 , 5 …”