A family affair: Supporting children with chronic illnesses

Abstract

Background: Children living with chronic illnesses may rely on family for social support during hospitalization. Understanding child and parent perspectives about the nature of the sibling and family relationships during hospitalization will provide information about these relationships during a stressful period.Methods: English-speaking children diagnosed with chronic illnesses, siblings, and parents participated. They were residing at a Ronald McDonald House. A qualitative study using interviews with children and parents was completed.Results: Seventeen mothers, eight children with illnesses, and twelve siblings completed interviews. Children with illnesses benefitted from connections with parents. Mothers believed that siblings and the ill child benefitted from being in close contact. Siblings were worried about their brother or sister with an illness, and despite this, the family was coping well. Siblings helped with the medical regimen for a brother or sister with a chronic illness. Trying to help the family function in a routine or "normal" fashion was important to children with illnesses and siblings.Conclusions: Family connection was critical for children with chronic illnesses during hospitalization. Findings highlighted the importance of sibling support as a factor promoting child and family resilience when a child is facing medical procedures.

Sibling Adjustment to Childhood Chronic Illness: An Integrative Review

“…As responsibility and maturity increased, HS assumed different roles within the family, including teacher (Woodgate et al, 2016), supportive protector, and helper (Kroner et al, 2018; Nabors et al, 2018, 2019; Velleman et al, 2016). Webster (2018) identified three roles HS of children with epilepsy adopt: (a) the alert assistant role characterized by monitoring the child for signs of seizures, (b) parent assistant role defined by helping parents with small tasks (e.g., getting items when the child is experiencing a seizure), and (c) substitute parents indicated by assuming primary care responsibility, similar to becoming a surrogate parent (Bursnall et al, 2018).…”

“…Higher impact of illness on the HS’s quality of life (overall physical, psychological, and social functioning) was associated with their sibling’s diagnosis, time since diagnosis, and age, such that shorter time since diagnosis, and older age than the ill child impacted HS the most (Havermans et al, 2010, 2015). Other negative perceptions included dislike toward doctors and nurses and discomfort with the hospital environment (Nabors & Liddle, 2017), although HS viewed hospital visits as helpful in providing familiarity and understanding (Nabors et al, 2019; Prchal & Landolt, 2012). Similarly, HS mentioned they could benefit from a more structured life and appreciated consistency by developing a daily schedule and not deviating from the normal routine (Wennick & Huus, 2012; White et al, 2017).…”

“…Strong and overwhelming negative emotions arose from having a sibling diagnosed with a chronic illness, including sadness, anger, embarrassment, guilt, self-blame, helplessness, and loneliness (Bursnall et al, 2018; D’Urso et al, 2017; Ejerkov et al, 2015; Kroner et al, 2018; Lobato et al, 2005; Nabors & Liddle, 2017; Plumridge et al, 2011; Prchal & Landolt, 2012; Velleman et al, 2016; Williams et al, 2009). Fear, shock, and worry (Christofferson et al, 2020; Nabors et al, 2019) were experienced when limited information was received from family and health care professionals about the diagnosis (D’Urso et al, 2017). HS also experienced loss of belonging and security due to the feeling of vulnerability (Bursnall et al, 2018; Long et al, 2015).…”

“…Although HS showed resilience in adjustment to the illness over time (Houtzager, Oort, et al, 2004), especially with support from family members (Nabors et al, 2019), siblings experienced unmet needs, especially adolescents and those with a larger age gap between siblings (Gorodzinsky et al, 2013; McDonald et al, 2015). Specifically, siblings of children with cancer, chronic fatigue syndrome, and myalgic encephalomyelitis described a lack of emotional, instrumental, and informational support, as well as physical comfort (Murray, 2002; Nabors et al, 2018; Velleman et al, 2016).…”

“…The way in which HS understand their sibling’s illness is an important factor for how they experience the changing dynamics associated with the care of their sibling. The family’s dynamics will inevitably be shaped by the necessary health-related care of their chronically ill sibling, and the way in which HS process and make sense of these family dynamics impacts their relationships with their sibling, their relationship with their parents, and their own psychosocial outcomes (Gold, Treadwell, et al, 2008; Gorodzinsky et al, 2013; Graff et al, 2010; Houtzager et al, 2004; Nabors et al, 2019). Subthemes of communication include HS’ reception of knowledge and understanding of illness.…”