Telling Adolescents a Parent Is Dying

Abstract

Background: When a parent is terminally ill, one of the major challenges facing families is informing children of the parent's condition and prognosis. This study describes four ways in which parents disclose information about a parent's life-threatening illness to their adolescent children. Methods: We audio-recorded and transcribed 61 individual interviews with hospice patients who were recruited from a large hospice in northeastern Ohio, their spouses/partners, and their adolescent children. The interviews were coded and analyzed using a constant comparison approach. Results and Conclusions: Families inform adolescents about the progression of a parent's terminal illness in characteristic ways that remain fairly consistent throughout the illness, and are aimed at easing the adolescents' burden and distress. The families engaged in the process of disclosure in one of four ways: measured telling, skirted telling, matter-of-fact telling, and inconsistent telling. These results will inform the development of interventions that assist families with disclosure and are tailored to each family's communication style.

The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis

“…With n = 5 additional papers identified from relevant reviews and papers already known to the research team, a total of n = 21 publications met the inclusion criteria and were retained in the review. 34 – 54 Of these, n = 13 are qualitative designs 35 , 36 , 38 , 39 , 41 – 43 , 46 , 47 , 49 – 51 , 54 and n = 8 quantitative. 34 , 37 , 40 , 44 , 45 , 48 , 52 , 53 These n = 21 publications report n = 18 studies.…”

Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review

“… 9 , 16 , 18 , 31 , 33 – 36 It has been shown that although parents are often the best people to talk to their children about the illness, they need considerable guidance from HCPs to start and manage these conversations. 31 , 32 HCPs need to appreciate the family’s unique situation when discussing issues of disclosure 9 and be aware that parents not only face the challenge of coping with the illness and its treatments but also the challenges of meeting their children’s needs. 32 Parents may fail to recognise or respond to the emotional distress of their children.…”

“…Although little is known about how parents tell their children that they are seriously ill and might die, 9 good familial communication about the diagnosis improves children’s psychosocial functioning. 10 Different factors may affect how children cope with their parent’s illness, including their age/level of cognitive maturity and the relationship with their parents.…”

Young people's perspectives on open communication between family members when a parent is dying

“…Some studies on the benefits of open communication for young people when a parent is dying have drawn on the perspectives of the ill parent (Asbury et al, 2014; Meriggi et al, 2016) or of the parent who is not ill (MacPherson, 2005). Although parents are aware that an open and honest approach to communication is recommended, the desire to protect young people is strong, and it sometimes results in more ambiguous and indirect attempts at knowledge transfer (Kopchak Sheehan et al, 2014).…”