Making Space for Siblings in Family-Centered Care

Mary Ann Gill, BS

Disclosures

Pediatr Nurs. 2020;46(1):48-51. 

In This Article

Abstract and Introduction

Introduction

Until recently, healthy siblings, like other family members, were largely absent from pediatric health care settings. Since then, however, research has shown that healthy children benefit when allowed to visit their siblings with illnesses or injuries in the hospital. For example, Oehler and Vileisis (1990) found that young children allowed to visit their newborn siblings in the hospital displayed less negative behavior in the weeks after birth. Children who visited were better able to recall even basic information, such as their sibling's name, as well as talk about their diagnosis. Nevertheless, being present during a hospitalization or other medical event can also be difficult for siblings. In the words of a child who lost a sibling to cancer, "One must not forget the siblings and just because they are older doesn't mean that they can manage by themselves. We need as much support [as the patient]" (Lövgren, Bylund-Grenklo et al., 2016, p. 299).

Siblings of children facing illness and injury are at risk of adverse developmental and psychological outcomes when their unique needs are not addressed fully and in a timely manner. It is also possible for children to experience psychological growth in the face of illness and hospitalization (Picoraro et al., 2014); however, this type of growth is not predominantly characteristic of sibling experiences. For example, parents of children with cystic fibrosis and cancer report far more negative than positive sibling outcomes, including emotional challenges, such as jealousy, anger, and depression, as well as behavioral and academic problems (Williams et al., 2009). Other difficulties facing healthy siblings include anxiety, sadness, activity restrictions, problems with peer relationships, a lack of information, and changes in family roles that contribute to increased family conflict (Nabors et al., 2018; Velleman et al., 2016; Wakefield et al., 2013).

These challenges have important implications for siblings' long-term physical and mental health. Children experience more frequent acute illnesses, hospitalizations, and medication changes in the first year after a sibling's death, suggesting that bereaved siblings' emotional distress has a physiological impact and creates a large health care cost burden (Brooten et al., 2018). Furthermore, it is well documented that pediatric patients and their parents or caregivers are at risk of long-term traumatic stress. Even children who reach full physical recovery face psychological struggles. For example, Rzucidlo and Campbell (2009) reported that injured children displayed relatively high levels of post-traumatic stress symptoms (PTSS) a year after injury. Both children and parents exhibit high levels of PTSS during stays in the pediatric intensive care unit, which are associated with a higher prevalence of post-traumatic stress disorder (PTSD) in the months afterward (Ward-Begnoche, 2007). Research specific to siblings on medical traumatic stress is limited, but two studies have illustrated high levels of PTSS in siblings of childhood cancer survivors (Alderfer et al., 2003; Kaplan et al., 2013). Thus, the available information suggests that healthy siblings are at risk of psychological consequences like those faced by patients and caregivers.

As health care providers become more attuned to the impact of pediatric medical traumatic stress (PMTS) on patients and caregivers, they should consider sibling experiences through the same lens. In a truly family-centered approach, family members provide an important source of strength and support for children experiencing illness or injury (American Academy of Pediatrics [AAP], 2012). Siblings of hospitalized children may offer a source of strength, improving family outcomes; on the other hand, their distress can have an adverse impact on the whole family. When providing family-centered care, nurses and other health care providers should be able to identify and address the needs of healthy siblings.

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