On parental self-efficacy in families with paediatric cataract and its clinical implications

Sammanfattning: Introduction: Parent participation is implicit in all paediatric care. Responsibility for the treatment after cataract surgery (contact lenses, patching, eye drops and being alert to signs of complications) mainly lies with parents. However, little is known about what parents go through and what kind of support they need from the ophthalmological team. Aims: To understand (I-III), explore (I and IV) and explain (IV) self-efficacy among par-ents of a child with paediatric cataract in order to promote self-management and improve clinical care. Patients and methods: Study I: questionnaires with open and closed questions were sent to parents of children (n=72) registered in the PECARE (Pediatric cataract register) and to paediatric ophthalmologists (n=30). In studies II and III, in-depth interviews with 23 parents were analysed using directed content analysis (II) and the grounded theory method (III). In Study IV, questionnaires were sent to all parents of children registered in the PECARE since 2006 (n=506). Four scales were selected: sense of coherence, fatigue, per-ceived social support and family self-efficacy, and on patient-reported experience measures (PREM). Results: Studies I and IV revealed what prerequisites the parents have – or do not have. In Study I, they wanted something they did not get, i.e. more information, both written and online. In Study IV, fatigue emerged as an obstacle to the sense of coherence, especial-ly among parents of children with bilateral cataract. Studies II and III provided an in-depth understanding of the parents’ self-efficacy and what strategies they use to adapt to a life in balance with a child with cataract. A model was developed in Study III to describe the parents’ situation. Conclusion: Parents go through a profound adaptation process throughout their child’s visual trajectory. As they are a self-evident part of the care of their child, the team needs to acknowledge that fatigue and uncertainty constitute a barrier to self-efficacy. This could be achieved by using a digital app, introducing a key worker and including other professions to the ophthalmological team in order to implement family centred care.