Kim Mooney-Doyle is a lecturer at the University of Pennsylvania School of Nursing.

Family-centered care is crucial to the care of children with cancer, whose disease and treatment are both life-threatening and often prolonged over the course of several years, through survivorship or until death.

 Family-centered care recognizes the stark reality that cancer is disruptive to the family system.

While acknowledging the value of family-centered care to the ill child and parents in clinical practice, we may overlook other family members who would also benefit from family-centered care, most notably the healthy siblings of the child with cancer. Indeed, healthy siblings have described wanting more information about their ill brother or sister and the illness

; parents have described wanting guidance on how to best meet the needs of the siblings when one child has advanced cancer

 and to do so across the spectrum of life-threatening illness.

Challenges associated with a cancer diagnosis, treatment, and adaptation impact the entire family. Recent research has demonstrated that families experience altered family function and may face an accumulation of risk over the course of illness,

 whereas other research reports that the experience of cancer increases family cohesion

Perceptions of the impact of cancer on the family often come from the parental perspective. However, recent research revealed worse agreement in parent—sibling pairs, regarding social and emotional health-related quality of life compared with parent–cancer survivor pairs.

Such findings remind us that each member of a family will assess the impact of the illness differently, and there may be limits to proxy-reporting. In a recent qualitative synthesis, Woodgate and colleagues found that parents across studies perceived siblings experienced feelings of jealousy, neglect, and bitterness.

 Yet, “while a few worked to counterbalance negative feelings in the siblings, a few rejected impartiality” 

 regarding the distribution of parent time and attention because of the illness.

In this same meta-synthesis, parents also reported changes in relationships with all of their children; although they reported more intense relationships with the brain tumor survivor, parents described a more distant relationship with their healthy children, which they ascribed to increasing independence in the healthy children. Taken together, we see that families experience increasing stressors in the face of a beloved child’s cancer.

This cumulative stress, including the caregiving demands of the illness, may prompt misaligned views of the illness’s impact on the family and its individual members; parents and healthy siblings may not agree on the extent and nature of illness-related effects on the family and individual members. When a child is diagnosed with cancer, the whole family is disrupted; more “whole-family” research is needed to elucidate these siblings’ everyday experiences.

As pediatric nurses, we need to be concerned about these siblings. Recent research suggests that siblings experience both positive and negative effects related to the experience of having a brother or sister with cancer.

 demonstrated that whereas most healthy siblings weather the cancer experience, some experience anxiety, depression, or other psychopathology. Overall, many healthy siblings reported feelings of fear, isolation, anger, guilt, and sadness. Another study found that siblings experience elevated cancer-related traumatic stress that interferes with daily functioning.

 For example, siblings of children with cancer experience negative changes in school performance when compared with  their peers

 In addition, healthy siblings were found to miss as much school as their brother or sister with cancer, nearly twice that of their healthy peers.

In quantitative studies, siblings of children with cancer did not demonstrate worse social functioning or relationships than their peers.

 In qualitative studies, however, affected siblings have described disrupted friendships and less time in favorite extracurricular activities.

 Thus, although siblings experience a variety of reactions across the various domains of their lives, more research is necessary to probe into the nature and ramifications of these reactions from the siblings’ perspective.

Bereaved siblings have a great deal to teach us. Recent evidence demonstrates that long-term psychological sibling health may be related to communication around their brother or sister’s death.

Siblings who were afraid of getting in the way of healthcare providers reported greater anxiety 2 through 9 years after the death. This same group found insufficient communication within the family around illness was related to long-term sibling psychological health. Other research in siblings of children receiving stem cell transplant has shown that do not perceive they receive adequate communication.

Recent research has also demonstrated that adolescent siblings of children with various life-threatening and life-limiting illnesses might avoid talking to their parents because they are hesitant to bother them with problems. Adolescent siblings may recognize the threat to their sibling’s life and appreciate that their parents are stressed. On the other hand, parents want their healthy children to know they are loved and want to keep their lives as normal as possible.

Nurses can promote a broadened scope of family-centered care and recognition of sibling needs in advanced disease and other times of turmoil. In doing so, we may mitigate some negative effects of strained or limited communication. Oncology nurses directly impact families through communication and can model open, compassionate, developmentally appropriate communication with siblings.

Moreover, coaching and teaching are inherent to nursing care of families. Thus, our role can be 2-fold: communicating with siblings across settings to increase their comfort or to provide education and coaching to parents in discussing sensitive, emotional topics related to the illness. Teaching parents to keep lines of communication open across the various fronts on which they parent all their children recognizes the intensity of their work and can promote family function and child outcomes at a time when both might be vulnerable.

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1. Ogle SK. Clinical application of family management styles to families of children with cancer. 

2. Pentz RD, Alderfer MA, Pelletier W, et al. Unmet needs of siblings of pediatric stem cell transplant recipients. 

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4. Mooney-Doyle K, Deatrick JA. Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary. 

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7. Beek L, Schappin R, Gooskens R, Huisman J, Jongmans M. Surviving a brain tumor in childhood: Impact on family functioning in adolescence. 

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11. Alderfer MA, Long KA, Lown EA, et al. Psychosocial adjustment of siblings of children with cancer: A systematic review. 

12. Kaplan LM, Kaal KJ, Bradley L, Alderfer MA. Cancer-related traumatic stress reactions in siblings of children with cancer. 

13. Alderfer MA, Stanley C, Conroy R, et al. The social functioning of siblings of children with cancer: A multi-informant investigation. 

14. Labay LE, Walco GA. Brief report: Empathy and psychological adjustment in siblings of children with cancer. 

15. French AE, Tsangaris E, Barrera M, et al. School attendance in childhood cancer survivors and their siblings. 

16. Samson K, Rourke MT, Alderfer MA. A qualitative analysis of the impact of childhood cancer on the lives of siblings at school, in extracurricular activities, and with friends. 

Clinical Practice in Pediatric Psychology

17. Wallin AE, Steineck G, Nyberg T, Kreicbergs U. Insufficient communication and anxiety in cancer-bereaved siblings: A nationwide long-term follow-up. 

18. Whiting M. Impact, meaning and need for help and support: The experience of parents caring for children with disabilities, life-limiting/life-threatening illness or technology dependence. 

Articles

From the University of Pennsylvania School of Nursing: Healthy siblings of children with cancer should not be overlooked in family-centered care.

Seeing Cancer Through a Sibling's Eyes: What We Don't Know Can Hurt Them

Kim Mooney-Doyle, PhD, CPNP-AC, University of Pennsylvania School of Nursing, discusses siblings of children with cancer in the context of pediatric palliative care.

Research has been completed on siblings of cancer survivors, siblings of children undergoing active treatment, and bereaved siblings, but there is a gap in the literature on siblings of children terminally ill with cancer, Mooney-Doyle says. The families of these children may be forced to focus more of their resources on the sick child because of demanding caregiver needs or because the child is expected to die prematurely. 

Through her current research, Mooney-Doyle aims to gather insight on the experiences of the siblings and develop an intervention to help parents meet the needs of all of their children. 

Kim Mooney-Doyle Discusses Siblings of Children with Cancer

Kim Mooney-Doyle, PhD, CPNP-AC, University of Pennsylvania School of Nursing, discusses the impact of nurses on families in raising both sick and healthy children.

For her research, Mooney-Doyle examined parenting in the context of pediatric palliative care and examined families caring for both a child with a life-limiting illness and healthy siblings. She found that parents make tradeoffs in their care in order to balance the needs of all children.

Being that nurses are with families throughout the course of their child’s illness, Mooney-Doyle says that nurses should have conversations with parents about their healthy children as well. Nurses can also connect families to community resources to help them parent their other children.

Kim Mooney-Doyle, PhD, CPNP-AC, University of Pennsylvania School of Nursing, discusses the impact of nurses on families in raising both sick and healthy children. 

Kim Mooney-Doyle, PhD, CPNP-AC

Articles

Seeing Cancer Through a Sibling's Eyes: What We Don't Know Can Hurt Them

Kim Mooney-Doyle Discusses Siblings of Children with Cancer

Kim Mooney-Doyle Discusses Nurses' Influences on Parenting