‘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

Abstract

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents’ experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in ‘parallel worlds’ throughout the end of life period. In one world, ‘living in the moment’, cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as ‘intermitted glimpses that death is approaching’, shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly ‘falling off the cliff’; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

Parental perspectives on the grief and support needs of children and young people bereaved during the Covid-19 pandemic: Qualitative findings from a national survey

“…Strain on family life due to work or financial pressures, combined with parental grief, may also mean that is harder for parents to provide the emotional support that young people need, whilst perceived distress or vulnerability in the parents may also stop children from talking about their feelings (8,12,13). Pre-pandemic and pandemic research has also demonstrated maladaptive tendencies amongst adults to try to protect children by not talking about the death pre-and postbereavement (8,(14)(15)(16)(17), uncertainty about how best to prepare children for the death (15,18), and difficulties maintaining parenting roles in the midst of their own grief and disruption (4). The difficulties of bereaved children and young people in managing and expressing their feelings has also been documented (4).…”

Psychotropic medication among children who experience parental death to cancer

“…A child may not be prepared if death occurs quickly or unexpectedly and this may affect subsequent psychological adjustment [16]. Recent research has shown that clinicians can play an important role in supporting and preparing the family when a parent is facing death due to cancer [39,40]. Training healthcare professionals to facilitate open communication between parents and children, especially when the prognosis is poor, may help mitigate the severe impact of loss [40,41].…”

“…Recent research has shown that clinicians can play an important role in supporting and preparing the family when a parent is facing death due to cancer [39,40]. Training healthcare professionals to facilitate open communication between parents and children, especially when the prognosis is poor, may help mitigate the severe impact of loss [40,41]. We also found that children bereaved during adolescence had the highest risk, but conclusions must be made with caution, as this may reflect efforts that have been made in Denmark to restrict prescription of psychotropic medication in children under 12 years [42].…”

Experiences of preparing children for a death of an important adult during the COVID-19 pandemic: a mixed methods study

“…Bereaved families have reflected it would have been helpful if HSCPs had started a conversation with them on how best to tell the children someone close to them was going to die. 2 This would require HSCP to: (1) understand the long-term benefits of effective communication for children's psychological well-being and family functioning; and (2) identify children within a patient's family and social network. HSCPs should ask their patients and/ or the relatives 'do you have important relationships with children?'.…”