부산대학교 도서관

Background: Children with life-limiting conditions have complex healthcare needs, creating associated "patient work" for their families and requiring multiple interactions with healthcare professionals (HCPs). Ehealth provides opportunities to enhance communication and support person-centred care, but when and for whom is this most useful, and why?Method: a realist evaluation of use of a bespoke website (MyQuality) for patients with life-limiting conditions and their families, incorporating individualised outcome measurement with an interactive graphic interface accessible to HCPs. The evaluation considered the views of 15 patients/parents and 10 HCP teams about this approach, building on communications models by Brundage and Kujala to develop and refine theories. Self-Determination Theory framed the analysis of deeper mechanisms influencing the delivery of person-centred care. Findings: For patients and their parents, MyQuality use supported life at home through efficient and meaningful documentation of daily life, facilitating reflection and improving understanding about the day-to-day variability in their child's needs, increasing the parents' sense of autonomy and competence. HCPs reported it helped to understand their patients' needs and support these proactively, but only if adequately trained and resourced to meet the needs identified by patients. The patient-controlled content and access triggered concerns for some HCPs about the extent and remit of their role, and trustworthiness of data. Sharing information enabled more efficient prioritisation of needs during subsequent healthcare encounters, shared decision-making based on reliable information, and facilitated development of patient/HCP partnerships, thus supporting person-centred care. Conclusion: This form of ehealth was welcomed by both individual patient/parent users and by many professionals, as it highlighted the perspective of the child and parents in healthcare dialogue. HCPs who struggled to engage with MyQuality described challenges to their professional autonomy, perceived limitations of their competencies, with subsequent difficulties maintaining supportive relationships with families. Future ehealth implementation needs to include recognition and support for the basic psychological needs of HCPs in order to improve communication and person-centred care, and simultaneously support workforce resilience.