Trends in Palliative Care Research 2020; Issue #11

Commentary by Dr. David Muccino, MD, MPH, FAAP, clinical assistant professor of pediatrics at University of North Carolina Children’s Hospital

Feature Article: Jaaniste, T., Tan, S. C., Aouad, P., & Trethewie, S. (2020). Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting conditionJournal of Paediatrics and Child Health.

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One of the primary goals of palliative care is to improve quality of life for patients and their families. Parents of children with life-threatening or life-limiting conditions are often required to divert more time, resources and attention to their sick child. The impact of having a sibling with a life-threatening or life-limiting condition is magnified if well-children experience reduced parental communication or loss of parenting. Accordingly, it is common for parents to seek guidance from providers about how to communicate with their other children. Parents may seek advice about communicating with siblings when a sick child has a new diagnosis, irreversible clinical decline or shortened life expectancy. Parents may overestimate their child’s understanding of a sibling’s medical condition, yet may underestimate their child’s ability to perceive disruption, discord and distress within their family1,2. Pediatric palliative care teams may provide resources, support and guidance necessary to help parents communicate effectively with their other children.
Jaaniste et al., in their article titled “Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition” provide a framework to guide parents in communicating with their other children. While the focus of parent-sibling communication may be illness-related, this framework incorporates communication about a broad range of life domains which may otherwise be neglected. Jaaniste et al. propose that there are two purposes of parent-sibling communication: to share information and to provide emotional support. These two purposes of communication should address two domains: illness factors of the sick child and other life areas for the well-sibling (i.e. school, friends, activities, etc.). This framework is further detailed below:

1. Information sharing about the sick child:

  • Well children often have a limited understanding of their sibling’s illness. Honest, developmentally appropriate, problem-focused communication may be associated with better psychosocial functioning in the well-child.
  • Involving siblings in the care of a sick child may facilitate their understanding of the situation and may shape a family’s narrative of the experience
  • Children prefer to receive information from their parents than from healthcare providers
  • In communicating with well-siblings, parents may express multiple fears:
    • Causing emotional distress to a well-sibling
    • Not understanding medical issues themselves, especially during frequent or rapid changes in a child’s clinical status
  • It is imperative that parents receive support and guidance from trained members of interdisciplinary healthcare teams (i.e. child life specialists, social workers and psychologists)

2. Emotional support related to the sick child:

  • Parents may lack insight into the emotional functioning of well-children
  • Well-children may not want to share their feelings to avoid burdening their parents or if they sense their parents lack emotional availability
  • Parents can provide verbal and non-verbal emotional support
  • Children who express feelings and receive emotional support may have better coping outcomes
  • Utilizing other support systems – grandparents, neighbors, friends, school staff and health professionals – may supplement the role of parents

3. Information sharing about the well-child’s interests:

  • Well-children often report their sibling’s illness dominates their parents’ attention
  • Well-children often describe loss of normalcy following a sibling’s new diagnosis
  • It is important that well-children share information about other life areas including school, friends and hobbies
  • Communicating about non-illness aspects of life may enhance parental-well-child connection and may improve a well-child’s capacity to be more open to complex illness-related topics

4. Emotional support related to the well-child’s interests:

  • Well-children with siblings with medical complexity may be at higher risk for stressors in other life areas and may fear sharing concerns with parents
  • Parents can provide support and demonstrate affection to help well-children make sense of their experiences, and to promote healthy socialization and development of values and skills
  • In adolescence, as well-children turn to peers for support, parents may remain a constant and reliable source of support and encouragement

Well-children often face a dual struggle – wanting to make sense of their siblings’ medical issues while maintaining independence and function in other areas of their lives. Jaaniste et al.’s framework identifies four areas that may help parents effectively communicate with siblings of children with life-threatening or life-limiting conditions. In utilizing this framework, parents should be advised that different well-children within the same family unit may communicate differently. Also, parents should be advised to adapt their communication depending upon their children’s developmental stages. Used appropriately, this framework may help children experiencing grief when their sibling is affected by a life-threatening or life-limiting condition. As the authors note, new diagnoses, medical complications, progression of disease and life-threatening crises may disrupt and cause problematic communication within families. As palliative care providers, we have the opportunity to provide families with the framework to allow these challenges to unite families.

1  Graff JC et al. Exploring family communication about sickle cell disease in adolescence. Journal of Pediatric Oncology Nursing. 2012;29:323–36.

Carter BS, Levetown M, Friebert SE. Palliative Care for Infants, Children and Adolescents: A Practical Handbook, 2nd Edition. Baltimore, MA: The Johns Hopkins University Press, 2011;209-223.