Behavioral Adjustment in Children with Life Threatening Illness A Qualitative Study

This study investigated factors that affect adjustment in children with life-threatening illness from the viewpoint of the parents/caregivers. The data were collected from parents/caregivers whose children have a life threatening diagnosis. Parents/caregivers were interviewed and asked to complete the Parent Request Questionnaire (PRQ) which was given to them after the in-person interview. This newly developed PRQ was utilized into prior research to predict the levels of adjustment in children. It includes age, whether the child has been informed of the diagnosis, whether the child engages in age-appropriate activities, the child\u27s prior experience with death, the child\u27s family\u27s involvement in treatment, and the child\u27s belief in an after-life. Prior literature suggests associations between these factors and the child\u27s ability to adjust to the diagnosis. This study examined these factors revealed by the parents/caregivers and any similarities were noted. There has been limited research conducted on behavioral adjustment in children with life threatening illness. This qualitative study utilized an open-ended interview process to gather information about the factors that promote behavioral adjustment and whether or not the factors already researched in quantitative studies applied. The interviewees were participants in independent support groups benefiting the caregivers/parents of the children with life threatening illness. Participants were also recruited by word-of-mouth after calling such groups and individuals in California. The PRQ was distributed after the interview as an additional measure. The interview revealed factors as noted by the caregivers and indicated the emergent themes of: isolation, fear, inquisitiveness, age-appropriate activities, diagnoses shared, and support systems. The interview and the PRQ were used to analyze child adjustment reported during the interview sessions. The participants in this study were all parents/caregivers. Instrumentation was a structured interview and a demographic questionnaire (PRQ). The texts were transcribed and analyzed using Thematic Analysis. Narratives of their life experience with the child having life-threatening illness were examined. Emergent themes, previously mentioned, were elicited from the interview material in hopes of providing additional support services needed as voiced by the parents/caregivers. “The electronic version of the dissertation is accessible at the Ohiolink ETD center http://www.ohiolink.edu/etd