Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study

Abstract

Considered in the context of middle range transition theory, we might suggest that parental foreground (seeking information directly) and background (passive actors) roles are the result of differing levels of uncertainty, and depend on the situation and preferences and child and family needs that may present differently over time in different contexts. Our work contributes to the emerging consensus that communication is more than a core set of skills that healthcare professionals just need to learn: clear specifications of mutual roles, responsibilities and a shared understanding of goals is also essential.

Parents’ Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China

“…Most families serve as information gatekeepers by asking physicians not to inform patients and avoiding the word “cancer” in front of even adult patients. Reasons for concealing information include information overload and emotional turmoil, lack of knowledge and skills for disclosing diagnosis, and assumptions about burdening the child with discussions about their cancer (Badarau et al, 2015; Gibson et al, 2018). There is increasing worldwide awareness of the complexity of information disclosure among children, parents, and HCPs (Gibson et al, 2018).…”

“…Reasons for concealing information include information overload and emotional turmoil, lack of knowledge and skills for disclosing diagnosis, and assumptions about burdening the child with discussions about their cancer (Badarau et al, 2015; Gibson et al, 2018). There is increasing worldwide awareness of the complexity of information disclosure among children, parents, and HCPs (Gibson et al, 2018). Some children want more information to help them understand and cope with their condition, while others are uncomfortable with open communication or relying on their parents for information (Gibson et al, 2010).…”

“…HCPs need to assess the child’s level of awareness and sensitively balance parents’ and children’s information needs and preferences. HCPs should also appropriately provide information to children based on their ability to understand and use medical play therapy to help younger children understand and express their thoughts and feelings (Aburn & Gott, 2014; Gibson et al, 2018; Sisk et al, 2016).…”

Az orvosi kommunikáció sajátosságai a gyermekonkológia területén, különös tekintettel a palliatív ellátásra

“…A tanulmányok jelentős része -bár az orvosi kommunikáció sajátosságait vizsgálta, például hogy az orvos kommunikációja vajon a szülő igényeit elégíti-e ki [8] -, nem a palliációra, hanem a betegség kezdetére vagy annak első időszakára vonatkozott [8][9][10][11].…”

“…A legtöbb esetben interjúkat, félig strukturált interjúkat készítettek a szülőkkel, melyeket személyesen vagy telefonon bonyolítottak le; egy esetben online fórum segítségével dolgoztak [9,12,13]. Gyakori volt, hogy hangfelvételt készítettek a szülő-orvos beszélgetésről, amelyre azután az utóbb lefolytatott interjú kérdései vonatkoztak [12].…”