‘Don’t forget the children’: a qualitative study when a parent is at end of life from cancer

Purpose Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (< 18 years old), with requirement for support from professionals. The aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. Methods This is an interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs) (n32) and funeral directors (n23). Data were analysed thematically and triangulated. Results Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life and (4) preparing for the future. Conclusions Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is ‘well enough’ to parent enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals

A qualitative systematic review of the social eating and drinking experiences of patients following treatment for head and neck cancer

PURPOSE: Patients living with and beyond head and neck cancer (HNC) often have long-term, functional challenges as a result of treatment. A key functional challenge relates to eating and drinking; often associated with physical, emotional, and social difficulties. Eating and drinking with family members and friends can become a struggle, increasing the risk of social isolation and loneliness. This systematic review aims to identify and synthesise the literature on the experiences of social eating and drinking for patients following treatment for HNC. METHODS: Six electronic databases (Pubmed, Web of Science, CINAHL, EMBASE, PsychINFO, and Scopus) were systematically searched using subject headings and free-text word searches in February 2020. Citation chaining and Google Scholar were used to identify grey literature. PRISMA procedures were followed. RESULTS: Of 6910 records identified, 24 studies met the inclusion criteria. Synthesis of the research findings results in two major themes: (1) the experience of loss associated with social eating and drinking, and (2) adjusting and support to promote social eating and drinking. CONCLUSION: Losses associated with social eating affect a patient’s psychological and emotional well-being and impact on close relationships. To promote positive participation in social eating, patients were more likely to seek and receive support from someone within their close social network, rather than a healthcare professional. Family and friends are an essential source of support and are integral in facilitating engagement with social eating following treatment for HNC. Future interventions should promote family orientated resources, incorporating self-management strategies. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-021-06062-7

‘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

Background: When a parent of dependent children ( 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.</p

“…<i>It might not have occurred to my husband that this woman, his wife who is taking care of him has some emotional needs as well…</i>”: The Unheard Voices of Partners of Black African and Black Caribbean Men with Prostate Cancer

© 2018, Springer-Verlag GmbH Germany, part of Springer Nature. Purpose: Evidence suggests that partners of men with prostate cancer (CaP) experience greater psychosocial distress compared with men themselves. However, the experiences of partners of high-risk (1 in 4) Black African (BA) and Black Caribbean (BC) men with CaP remain poorly understood as existing research has predominantly focused on Caucasian populations. This study aimed to address this gap by exploring partners’ experience and support needs as influenced both by the specific impacts of CaP, treatment side effects and socio-cultural context. Methods: Using a constructivist grounded theory approach, eight face-to-face, two Skype and one telephone interviews were conducted with eligible partners (n = 11). The interviews were analysed using constant comparison following key stages of open, focused and theoretical coding. Results: Three broad categories emerged which described participants’ experiences: ‘partner in the passenger seat’, ‘care-giving on an isolating journey’, and ‘coping as a partner’. Findings showed that BA and BC cultural marital context influenced how partners experienced and traversed the CaP journey. Peripheral involvement in decision-making, communication restrictions, limited access to support and lack of recognition for their experiences and needs further contributed to partners’ psychological and emotional distress. Conclusions: Cultural beliefs, behaviours and values should be taken into account when developing psychosocial support for partners and their men with CaP. Specifically providing information focused on partners and including them in the CaP care pathway could help ensure that partners’ needs are recognised and improve marital communications. This could potentially help partners and their men to identify acceptable ways of supporting each other throughout the CaP experience