Communication and Trust in the Care Provided to a Dying Parent: A Nationwide Study of Cancer-Bereaved Youths

Abstract

Our study suggests that children's trust in the care provided to a dying parent was highest when they received end-of-life medical information before their loss.

The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children’s perspectives

“…A previous study with 622 teenagers who lost a parent, shows that 98% wanted to be told when the parent's death was imminent [32]. Other studies [2,3], show that children who believed until three days before the death of a parent that the illness was curable, who distrusted the care given to the dying parent, or whose families lacked cohesion, were more likely to suffer long-term psychological distress, years after the loss. Beardslee [20] stresses that by increasing children's knowledge, breaking the silence and starting communication within the family, and giving children possibilities for moving on and facing the future, the children could be freed from guilt and fear.…”

“…Children living with a parent who has a life-threatening illness express having difficulty communicating with their parent about their own thoughts and feelings [1]. Children are also known to show psychological distress, years after loss, if communication between the family and health care professionals and illness-related information is poor during the illness and after death [2,3]. Many parents express a need for support from health care professionals concerning when and how to talk to their children about the illness, but such support is often absent [4][5][6][7].…”

Bereaved Siblings’ Advice to Health Care Professionals Working With Children With Cancer and Their Families

“…This study used a study-specific questionnaire to explore siblings’ experiences of losing a brother or sister to cancer. The questionnaire was developed using a stepwise approach described by Charlton (2000) and others (Eilegård et al, 2013; Grenklo et al, 2013; Kreicbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004; Rådestad, Steineck, Nordin, & Sjogren, 1996; Valdimarsdottir et al, 2007). This stepwise approach used in constructing the questionnaire involved several steps.…”

Adolescent Experience With Parental Cancer and Involvement With Medical Professionals: A Heuristic Phenomenological Inquiry

“…Furthermore, limited communication with providers and not being aware of the possibility of parental death results in adolescents being poorly prepared for the death, which puts them at risk for psychological complications for several years after the cancer bereavement (Hauksdottir et al, 2010; Kreicbergs et al, 2004). Trusting medical providers and being able to openly communicate regarding the treatment options helps adolescents perceive the care of their parents in a positive way, which can help with accepting the illness, impending death, and grief (Bylund-Grenklo et al, 2013; Klostermann et al, 2005). Adolescents have identified the need for a safe space to interact with peers as well as health professionals so that they can process the information without worrying about the reaction of their parents (Kennedy & Lloyd-Williams, 2009; Stiffler et al, 2008).…”