Foreldres diagnosekunnskap, helsekompetanse og myndighet før og etter veiledning om sjeldne diagnoser

Parents of children with rare diagnoses are often responsible for both providing diagnosistic information to service providers and for coordinating services. This requires diagnostic knowledge, insight into services and belief in yourselfself-confidence. Competence centreers for rare diagnoses provide joint counselling for parents and service providers to ensure good care for the child. The study aimed to describe parents’ health literacy and perceived empowerment before counselling, and their perceived change in this, and in their diagnostic knowledge after after counselling. The participants were 42 parents from 38 families (23.8 % fathers) of children with rare diagnoses (1–16 years). Health literacy and empowerment were measured with the Health Literacy Questionnaire (HLQ) and the Family Empowerment Scale (FES) pre-counsellingbefore and two months post-after counselling. A sub-sample (n = 27) , and 27 parents werewas interviewed two months after counselling interviewed two months post counseling about perceived changes in diagnostic knowledge and health literacy. A content analysis of interview data and statistical analyszes of correlations between with parents’ and children’s age, group differences (gender, educational level and economyfinancial situation), and changes in the outcome measures were conducted. Children’s age and parents’ educational level were related to health literacy, and educational level was also related to perceived empowerment before pre-counselling. Interviews described increased knowledge and health literacy post- counselling. No significant change in health literacy were was found with HLQ. A significant increase in empowerment was found for parents with up to four years of higher education. Parents with initially low health literacy and empowerment showed the greatest increase post- counselling. Joint counselling forof service providers and parents for counseling is an important health psychology work method in health psychology that strengthens parents in their role when as parents to athe child haswith a rare diagnosis. Keywords: rare disorders, parent empowerment, health literacy, diagnostic knowledge