CHRONIC CHILDHOOD ILLNESSES - WHAT ASPECTS OF CAREGIVING DO PARENTS VALUE

Parents of children with chronic illnesses are at significantly increa sed risk to experience mental health problems. Because such families a re in frequent contact with the health care system, it is possible tha t aspects of the organization and content of health services might con tribute to the development or prevention of these emotional burdens. T he purpose of the present study was to examine the patterns of parenta l values about a variety of aspects of care and services, assessing bo th the absolute and relative importance of 22 defined components of ca re(COCs). Respondents were 80/111 parents (72%) of children with diabe tes mellitus and 45/56 parents (80%) of children with cystic fibrosis, followed at a regional university-affiliate children's hospital. They completed a two-part mailed questionnaire, rating independently each COG, and then ranking all 22 COCs using a modified Q-sort technique. W hile the majority of COCs were judged as 'somewhat' or 'very' importan t by over 75% of respondents, there was also significant agreement bet ween the two groups on their rankings of the COCs (Spearman rank coeff icient r = 0.92, P < 0.001). The COCs ranked most highly by both group s were diagnosis, treatment, education information, continuity/consist ency, accessible and available care, evaluation of chronic illness, an d parental involvement. Furthermore, the concordance between this comb ined medical illness group and a previously-studied neurodevelopmental group was r = 0.72 (P < 0.001). These results are discussed in relati on to the non-categorical approach to longstanding childhood illness a nd disability. Implications for preventive mental health within the co ntent and structure of health services are considered.