When a Sibling Is Chronically Ill

Source: Katie Willard Virant

When a child is chronically ill, the illness affects all family members. This month’s blog post explores the effects of a sibling’s chronic illness on his or her healthy siblings. Risk and protective factors affecting the healthy sibling’s experience include parental coping, family and community support systems, involvement in the ill child’s care, and processing of complicated feelings about the sibling’s illness.

Parental coping

The ill child in a family requires an enormous amount of parental time and attention. Arranging and attending medical appointments, medication management, and navigating the health insurance system demands physical and cognitive labor. Worrying about the child, monitoring the child’s health as it ebbs and flows, and being prepared to respond immediately to health crises as they arise are emotionally challenging. Hospitalizations, when they occur, upend the entire family, with parents pulled between hospital and home. Economic stability is often threatened, as illness-related expenses accrue and parental caregivers find it difficult to secure flexible employment that allows them to care appropriately for their ill child. It’s little wonder that parents caring for a chronically ill child are inordinately stressed (Mitchell et al., 2021).

Parental stress means that healthy siblings of the ill child have less access to parental time and focus, and also that they are exposed to parental depression and anxiety. Reduced parental attention is a risk factor for poor mental health outcomes for healthy siblings (Kelada et al., 2021). Some healthy siblings internalize a belief that they must behave perfectly and avoid being a burden to parents or add more stress. Other healthy siblings act out in a desperate attempt to claim parental attention.

Parents need support in managing stress so that they can be present for all of their children. Therapeutic intervention includes normalizing and managing the parents’ feelings of overload, and also concrete behavioral work improving family relationships.

Family and community support systems

It indeed takes a village to raise children, and this is particularly true when one child in a family is chronically ill. Parental attention and focus will be affected by the illness, no matter how hard a parent is working to ensure that all of her children have access to her. Families do better when this reality is acknowledged, and when caring adults outside of the immediate family are enlisted to support healthy siblings (Agerskov et al., 2021). Grandparents, aunts and uncles, and family friends are likely candidates. Their support can include supplementing the time and attention that preoccupied parents struggle to provide, and direct caregiving when the ill sibling is hospitalized and parents are unable to be at home.

Teachers and school personnel also should be notified of the healthy sibling’s family situation. Sensitivity to how academic and social functioning may be affected by having an ill sibling can pave the way for adjustments and accommodations designed to support the child.

Peer support, too, is important (Lummer-Aikey & Goldstein, 2021). Parental overload can interfere with healthy siblings taking part in extra-curricular activities and bonding with peers. Ensuring that healthy siblings have these opportunities is a protective factor in their functioning.

Involvement in ill child’s care

Recent research finds that a healthy sibling’s involvement in care for his ill sibling is positive, leading to a feeling of involvement and empowerment (Kelada et al., 2021). However, caution must be taken not to overburden the healthy sibling with tasks beyond his or her developmental capabilities (Earley & Cushway, 2002). An involvement that feels positive for all siblings, even something as seemingly simple as sharing a joke or drawing a picture, is beneficial. Involvement that is more appropriately parental (medication reminders, monitoring the ill sibling for signs of illness flare) is not.

Processing feelings about the ill sibling

Painful feelings about the ill sibling are normal (Mitchell et al., 2021). Healthy siblings may feel resentful of the parental time and attention the ill sibling needs. They may feel jealous, angry, sad— and then feel very guilty about those emotions. They also may worry a great deal about the ill sibling, fearing that the sibling will die. As they get older, they may feel that their own trajectory is limited by the needs of the ill sibling: Can they leave for college? Will they be responsible for the care of their sibling when their parents die?

It’s essential that they have a relationship in which they can express and understand these feelings. Therapy can be highly beneficial.

Questions for Reflection

When the family works well as a unit, all children—including healthy siblings—thrive. Questions for parents to reflect upon include:

• How are we coping, individually and as a parental couple?
• Who are our support systems?
• Are we able to assess accurately how our children are coping? Who can help us with this important task?
• Do we offer our children developmentally appropriate ways to express concern and care for their ill sibling?
• Do we rely on our healthy children to support our well-being, or do we retain our parental role of supporting their well-being?
• Do we accept and make space for our children’s painful feelings about their sibling’s illness?