The perceived effect of parental cancer on children still living at home: According to oncology health professionals

Abstract

In Australia, the projected estimate for new cancer cases among adults aged 25-49 years is 16,715, accounting for 8.66% of all new cancer cases in 2019 (AIHW, 2019). Reported 5-year survival rates suggest patients and their families are living longer with the impact of a cancer diagnosis (Werner-Lin & Biank, 2009). This younger cohort is likely to be in the workplace or studying, and many will have dependent children living at home (Semple & McCaughan, 2013; Werner-Lin & Biank, 2009). In Australia, there are currently no population data regarding the prevalence and characteristics of children living with parental cancer. However, a longitudinal study conducted in Western Australia (WA) reported that 0.28% of children experienced a parent's cancer diagnosis in 2015 (Martini, Morris, Jackson, & Ohan, 2019). 1.1 | Impact on families Following a cancer diagnosis, patients and their families are likely to experience disruptions to their normal routines, strains to relationships, changes in roles and responsibilities, financial pressures and difficulty

Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals

“…Thus, while professionals empathised with the parents, recognising that they might be having difficulties accepting their prognosis and have the desire to protect their own children from distress, their own perceived duty to the child led to a dilemma that left them feeling powerless [ 18 , 19 , 21 , 22 , 25 – 27 ]: “Some nurses found it difficult when parents were persistent in their determination to protect their children from matters related to their illness and forthcoming death, and in these cases relied on the parents to take responsibility for their children…. Nurses indicated that they knew that by law, children have the right to professional advice, support and information, but at the same time the nurses knew they could not defy the wishes of the parents.” [ 26 ] …”

“…While still emotionally difficult for professionals in general, these were instances where their psychological burden was reduced [ 23 ]. Professionals had a harder time if they had less experience with children, either professional [ 19 , 24 , 27 ] or personal [ 27 , 31 ], to draw on.…”

“…Organisations' protocols and guidelines implying that children were not a priority resulted in professionals feeling alone and unsupported, undervaluing related child-centred work. Professionals mentioned getting a sense (either directly or indirectly) that the adult patient was their focus, and that interacting with their children was not important [ 16 , 19 , 21 – 26 , 31 , 32 ]. “In principle, there should be a patient—that is, a person with a diagnosis—in order to claim professional attention in the medical field … Partners and children do not have a diagnosis related to palliative care and so they do not have the legitimate (medical) right to attention from a doctor or other professionals.” [ 32 ] …”

“…Lack of a child-friendly environment in institutional settings as well as visiting hours clashing with school time compounded children’s absence or lack of participation. [ 19 , 21 , 24 , 26 , 27 ]. Some professionals “highlighted hospitals as an unsuitable environment for children and talked about the importance of facilitating children’s play so that children could be ‘themselves’ in their own arena – for example, by providing home visits and playrooms in hospitals.” [ 25 ].…”

“…Professionals were unsure what services other agencies provided, and how they might complement their own [ 21 ]. Referrals could be dropped [ 19 , 21 ] if process was unclear or information not signposted [ 20 , 23 ]. Without follow up, professionals upstream were unaware what happened to the children after bereavement [ 27 , 32 ], including whether needs were adequately met [ 22 ].…”