Chronic childhood illnesses: what aspects of caregiving do parents value?

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Abstract
Parents of children with chronic illnesses are at significantly increased risk to experience mental health problems. Because such families are in frequent contact with the health care system, it is possible that aspects of the organization and content of health services might contribute to the development or prevention of these emotional burdens. The purpose of the present study was to examine the patterns of parental values about a variety of aspects of care and services, assessing both the absolute and relative importance of 22 defined components of care (COCs). Respondents were 80/111 parents (72%) of children with diabetes mellitus and 45/56 parents (80%) of children with cystic fibrosis, followed at a regional university-affiliated children's hospital. They completed a two-part mailed questionnaire, rating independently each COC, and then ranking all 22 COCs using a modified Q-sort technique. While the majority of COCs were judged as 'somewhat' or 'very' important by over 75% of respondents, there was also significant agreement between the two groups on their rankings of the COCs (Spearman rank coefficient r = 0.92, P < 0.001). The COCs ranked most highly by both groups were diagnosis, treatment, education/information, continuity/consistency, accessible and available care, evaluation of chronic illness, and parental involvement. Furthermore, the concordance between this combined medical illness group and a previously-studied neurodevelopmental group was r = 0.72 (P < 0.001). These results are discussed in relation to the non-categorical approach to longstanding childhood illness and disability. Implications for preventive mental health within the content and structure of health services are considered.