A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system.

BACKGROUND: Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care. METHODS: This study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre's services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals' experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre's operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres' population. DISCUSSION: The findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings.

Public Health Messaging during the COVID-19 Pandemic and Its Impact on Family Caregivers' COVID-19 Knowledge.

BACKGROUND: Enabling accurate, accessible public health messaging is a critical role of public health officials during a pandemic, but family caregivers of people living with dementia (PLWD) have rarely been specifically addressed in public health messaging. OBJECTIVE: The objective of this study was to examine how family caregivers for people living with dementia access and evaluate public health messaging in Alberta. METHOD: An online survey was conducted with family caregivers for PLWD (n = 217). RESULTS: Most respondents rated public health messaging as good or excellent (63.9%), but specific information about how to access caregiving information (69.5%) and what to expect in the future (49.1%) was rated as less than good. Family caregivers also identified how to care for a PLWD during the pandemic (57.5%) as a key information need. Healthcare providers/workers were the least frequently used source of public health messaging. Almost all family caregivers (94.4%) rated their own COVID-19 knowledge as good or excellent. DISCUSSION: Tailored, context-driven public health messaging for family caregivers of PLWD is critically needed.

COVID-19 and Long-Term Care: the Essential Role of Family Caregivers.

BACKGROUND: Those most at risk from severe COVID-19 infection are older adults; therefore, long-term care (LTC) facilities closed their doors to visitors and family caregivers (FCGs) during the initial wave of the COVID-19 pandemic. The most common chronic health condition among LTC residents is dementia, and persons living with dementia (PLWD) rely on FCGs to maintain their care provision. This study aims to evaluate the impact of visitor restrictions and resulting loss of FCGs providing in-person care to PLWD in LTC during the first wave of the COVID-19 pandemic. METHOD: An online survey and follow-up focus groups were conducted June to September 2020 (n=70). Mixed quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used to evaluate study data. RESULTS: FCGs were unable to provide in-person care and while alternative communication methods were offered, they were not always effective. FCGs experienced negative outcomes including social isolation (66%), strain (63%), and reduced quality of life (57%). PLWD showed an increase in responsive behaviours (51%) and dementia progression. Consequently, 85% of FCGs indicated they are willing to undergo specialized training to maintain access to their PLWD. CONCLUSION: FCGs need continuous access to PLWD they care for in LTC to continue providing essential care.