The Impact of a Child with Sickle Cell Disease on Family Dynamics

Abstract

This paper has reviewed research and other papers that have furthered our understanding of the impact of the presence of a child with sickle cell disease on the family. The research suggests that the primary parent in such a family experiences additional emotional strain much like primary parents of children with other chronic illnesses have been found to exhibit. The research also suggests that the ill child's presence influences interpersonal relationships within the family. Specifically, there is some evidence that the relationship between the parents and the relationship between the parent and other offspring may be affected adversely. The only evidence for an adverse impact on the relationship between the parent and the chronically ill child was in our research when considering only single-parent families. The research also suggests that the family environment is affected. In particular, the research suggests that the level of conflict and organization within the family was less favorable than within the control families. Moreover, the research suggests that the child's presence reduces the ability of the primary parent to participate in social activities outside of the family. Secondary parents, on the other hand, report less satisfaction with the extent to which their own individual needs are being met within the family. The available research also suggests that other factors mediate the impact of the child's illness on the family. In particular, parents with more knowledge about the illness and more social support available appear to cope more favorably with the illness. Moreover, the available research also suggests that the family also impacts on how the patient responds to the illness. Specifically, the more psychosocial stressors within the family, the less effectively the patient copes with the illness. In addition, the more social support available to the patient from the family and other significant others, the more likely the patient is to comply with the treatment regimen. Finally, two methodological issues have been discussed. First, a tendency is evident for parents to deny any impact on the family when asked directly but to demonstrate the impact when the responses of these parents are compared to the responses of a comparison group. This suggests a need for more studies that involve a comparison group in the design. Second, the small sample sizes in many of the studies reflect the lack of adequate sample in individual geographic locales. This suggests a need for more collaborative research projects such as the CSSCD project to increase sample size.

An expanded Transactional Stress and Coping Model for siblings of children with sickle cell disease: family functioning and sibling coping, self‐efficacy and perceived social support

“…increased conflict, difficulties managing children, family members with emotional problems). Thus, everyday life challenges are further exacerbated when a child's family member has a lifelong, unpredictable and at times debilitating chronic disease (Burlew et al . 1989).…”

Improving disease knowledge in 6‐ to 10‐year‐olds with sickle cell disease: A quasi‐experimental study

“…Parental unemployment may have various effects on health and development of children (Sleskova et al, ) as well as on various social factors such as self‐esteem (Bacikova‐Sleskova, Madarasova Geckova, van Dijk, Groothoff, & Reijneveld, ; Sleskova et al, ). Possibly both these factors could result in higher levels of psychological stress which has shown associations with poorer disease outcomes and difficulties in adjustment to SCD in children (Burlew, Evans, & Oler, ; Thompson Jr et al, ). The pathways through which these two social indicators impact children outcomes in the present setting however need further exploration.…”

Protective Aspects of Adaptive Behavior in Children With Sickle Cell Syndromes

“…For example, both better problem-solving abilities and higher intellectual functioning have been associated with higher competence and adaptive behavior for nonchronically ill youths at risk because of poverty or psychiatric illness in their parents (Garmezy & Masten, 1991;Garmezy, Masten, & Tellegen, 1984;Kandel et al, 1988;Luthar, 1991;Werner & Smith, 1992). Similarly, youths who came from families exhibiting greater family cohesion and organization reported greater coping competencies (Burlew, Evans, & Oler, 1989;. In addition, children identified as having greater adjustment difficulties were found to display fewer cognitive competencies than were their more adjusted counterparts (Cohen, Gotlieb, Kershner, & Wehrspann, 1985;.…”