Children and adolescents’ preferences for support when living with a dying parent – An integrative review

Abstract

Living with a dying parent when one is at a young age is considered among the most traumatic experiences a person can have (Phillips, 2014). The loss can result in physical, cognitive, emotional and behavioural problems, and many children and adolescents, in this study defined as 2-18 years of age (Office of the High Commissioner for Human Rights, 1989; World Health Organization, 2001), struggle for years after the parent's death (Phillips, 2014;Torbic, 2011). This study was conducted from the children and adolescents' perspective and focuses on their preferences for support during the period before and immediately after the parent's death. In this context, preferences are linked to children and adolescents' first choice in how they want to be supported. This includes both support from professionals and other social networks. Such knowledge is needed when designing interventions to prevent ill health among bereaved children and adolescents and to improve the quality of palliative care. The consequences of not exploring different preferences may be that supportive interventions do not work as they should, and thus unsatisfactory help is generated for this vulnerable group. | BACKG ROU N DChildren and adolescents living with a parent who has a lifethreatening illness are at risk of developing long-lasting symptoms and ill health. To eliminate outcomes such as low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness

Adolescents’ and young people’s needs and preferences for support when living with a parent with life-threatening cancer: a grounded theory study

“…Comparisons and compositions of initial and focused codes through the constant comparative method were used in all phases of analysis and performed in collaboration with all authors. Theoretical sensitivity and reflexivity were quality assured through a previous review study [36], as well as through theoretical and practical knowledge within the research team. Simultaneous analysis and data collection continued until no new qualities were found to modify the emergent theoretical codes; hence, data saturation was reached and recruitment ended.…”

“…To prevent and counteract serious health challenges in adolescents and young people, it is important to map the individual's preferences and needs for support, as well as their support network. The lack of suitable measuring instruments for this purpose has also been highlighted in previous studies [36,70,71]. There is, however, an instrument called "the Offspring Cancer Needs Instrument" (OCNI) [72], which is aimed to assess psychosocial unmet needs of young people who have a parent with cancer.…”

“…The transition process is unique to the individual and can be complex because it requires new knowledge, changed behaviour, a supportive environment and the re-examination of one's self-image [75,76]. Previous research indicates that it is in conjunction with 'tipping points' in the parent's disease trajectory that young relatives are the most vulnerable and that HCPs should be aware of this when providing support [36]. In addition, these transitions must be balanced with normal cognitive, physical and emotional changes in adolescents and young people, which in and of itself can be demanding.…”

“…It has been emphasised that HCPs want and need guidelines and research-based knowledge on how individualised support for adolescents' and young people should be provided [31,33]. However, it is still unclear how to identify those who need professional support and, above all, what the support should consist of and how this should be provided [10,19,[33][34][35][36].…”

Helping patients prepare their dependent children for parental death: mixed-methods evaluation of a codeveloped training programme for palliative and allied healthcare professionals in the UK

“…When a parent is dying from a life-limiting condition, open and honest communication between parents and their children is vital for children’s well-being and their future emotional, behavioural and educational development 1 2. Children wish to be informed about their parent’s illness and prognosis and can be resilient if given age-appropriate information and support to grieve 3–5. Nevertheless, parents often feel anxious and ill prepared to hold honest conversations at this time and can be at odds with their partners and wider family over what is best for their children; some avoid telling their children how ill their parent is until death is imminent 6.…”