Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children

Abstract

BackgroundIn pediatric hemophilia, caregivers are facing unique challenges to adherence and self-care in children and adolescents with hemophilia. Hemophilia treatment requires adequate prophylaxis and on-demand treatment, as well as a clear behavioral strategy to limit risk-taking in terms of physical exercise and diet. Medication adherence rates of hemophilia patients have been reported to decrease during late childhood and adolescence. In the developing child, moving safely from parent-care to self-care is one of the greatest challenges of integrative care within this domain. There is a clear need for initiatives designed to increase an individual’s motivation for treatment and self-care activities.DiscussionAmong motivational approaches, the self-determination perspective offers a useful framework to explain how the transition to self-care can be facilitated. We discuss how motivation regarding hemophilia treatment may be increased through parental autonomy support and we offer examples of applied communication techniques to facilitate autonomy-supportive caregiving. Although it has not yet been tested in the context of hemophilia, these communication techniques could potentially help caregivers promote adherence and self-care in children.SummaryConfronted by unique challenges to adherence and self-care, caregivers of children with hemophilia should move from an exclusive focus on illness-management education to an integrative strategy, including motivation-enhancing communication. The self-determination perspective provides important proximal objectives (e.g. autonomy support) to maintain optimal adherence in adolescents as they move from parent-care to self-care. Future research initiatives should address the practice of these communication techniques and evaluate them in the context of hemophilia.

Treatment adherence in hemophilia

“…Motivational techniques may be implemented to improve self-care. 52 Providers can teach parents communication strategies to motivate children to take part in their health care and decision-making, going beyond simple illness management to a broader scope that allows autonomy and encourages children to take responsibility for their own health and risk behaviors.…”

Medication Non-adherence Prevalence and Determinants in Children and Adolescents with Chronic Liver Diseases

“…We could not find any significant association between non-adherence and parents' role in medicine taking, and the overall distribution of patients with low, middle, and high adherence levels in different medicationtaking groups were alike. In order to lower the low adherence to medications, especially in adolescents, it is recommended that we should shift from parent-care to self-care and autonomy (19).…”

Health Care Transition of Adolescents and Young Adults with Haemophilia: the Situation in Germany and the Munich experience

“…28 The relevance of this goal has been underlined by an early study, showing that the stress level of patients with haemophilia is higher and the quality of life is lower in the post-transition era. 29…”

“…At this age, patients should be able to perform home treatment by themselves and to act in the case of bleeding. This skill and the swap from parent care to self-care are the key to independence 29 ; e.g. to allow studying abroad, patients must be able to substitute factor concentrates at work or while travelling.…”