Standards of Psychosocial Care for Parents of Children With Cancer

Abstract

Parents and caregivers of children with cancer are both resilient and deeply affected by the child's cancer. A systematic review of published research since 1995 identified 138 studies of moderate quality indicating that parent distress increases around diagnosis, then returns to normal levels. Posttraumatic symptoms are common. Distress may be impairing for vulnerable parents and may impact a child's coping and adjustment. Moderate quality evidence and expert consensus informed a strong recommendation for parents and caregivers to receive early and ongoing assessment of their mental health needs with access to appropriate interventions facilitated to optimize parent, child and family well-being.

Perceptions of support among Swedish parents of children after end of successful cancer treatment: a prospective, longitudinal study

“…According to recent guidelines for the psychosocial care of families of children diagnosed with cancer, 'access to appropriate interventions for parents and caregivers should be facilitated to optimize parent, child and family well-being' [22]. This study shows that there is room for improvement with regard to parents' access to support from psychologists and social workers after end of a child's cancer treatment.…”

“…Our study was not primarily designed to identify 'risk groups' for elevated support needs. However, until such groups are identified we suggest systematic identification of needs of support from healthcare professionals among all parents of children treated for cancer, in line with the standards of psychosocial care for parents of children with cancer [22].…”

Quality of Life in Pediatric Cancer Survivors: Contributions of Parental Distress and Psychosocial Family Risk

“…One possibility for the lack of relation between parental distress and child-reported hrql may be due to differences in parent and child perceptions of the child's hrql. Specifically, parent psychological distress could have negatively influenced a parent's perception, and subsequent report, of their child's well-being, resulting in a more negative evaluation than expressed through the child's self-report 32 . On the other hand, it may be that children and young adolescents have more insight into their internal states, while parents often need to rely on observable behaviours and information their child shares 17,33 .…”

Should Clinicians Intervene If They Suspect That a Caregiver Whose Child Has Cancer Is at Risk of Psychological Harm?

“…Evidence-and consensus-based guidelines for providing comprehensive psychosocial care to children with cancer and their families were published in 2015 by Pediatric Blood & Cancer, the official journal of the American Society of Pediatric Hematology/Oncology and the International Society of Paediatric Oncology [20,21]. Among the adopted standards included recommendations for routine assessment of psychosocial needs of patients and families and access to psychosocial support and interventions, including psychiatric or other mental health treatment as appropriate [20].…”

“…Among the adopted standards included recommendations for routine assessment of psychosocial needs of patients and families and access to psychosocial support and interventions, including psychiatric or other mental health treatment as appropriate [20]. Notably, the standards specifically reference the need to ensure that parents or other caregivers have access to mental health care [21,22]. In the above cases, adoption of these standards would mean that both families would be identified as having psychosocial risk factors early, during routine psychosocial assessments, and offered appropriate services and interventions-perhaps preventing deterioration of the first patient's situation to the point at which referral to CPS was legally mandated.…”