Literature Collection

OBJECTIVE: To explore quality of life outcomes for caregivers of children with childhood dementia including the positive and negative impact of caregiving. The secondary aim was to explore caregivers' perspectives on healthcare services for children with dementia. DESIGN: Cross-sectional, mixed-methods study with analyses of quantitative and qualitative data collected via online survey. SETTING: Australian tertiary referral children's hospitals, clinics and community advocacy groups. PATIENTS: 40 caregivers of children with dementia. INTERVENTIONS: The survey was developed by a multidisciplinary team of clinicians including paediatric neurologists and behavioural scientists with experience in caring for families with childhood dementias and mixed-methods research. MAIN OUTCOME MEASURES: Surveys assessed caregiver-reported health-related quality of life, psychological distress, the impacts of caregiving and perspectives on healthcare services and how they may be improved for children with dementia. RESULTS: Psychological distress was reported by 72.5%, caregiver stress by 67%, chronic pain or discomfort by 43% and for 87.5% their child's condition had a moderate or severe impact on their ability to do regular daily activities. Caregivers voiced a desire for more integrated care, increased general awareness and education around childhood dementia and a greater need for more trained support services. CONCLUSIONS: Caregivers of children with dementia experience high levels of psychological distress, physical and social consequences. This study highlights the need for integrated care and psychosocial support to efficiently connect children and families with appropriate healthcare services and resources.

BACKGROUND: Integrated youth services are an emerging delivery model in Canada that addresses siloed and fragmented youth mental health and other services. Youth engagement is viable for developing integrated youth services when purposefully built. However, it is not always clear how youth are involved in service transformation as decision-makers, and it requires an exploration of how to work with youth authentically and intentionally in the codesign process. METHODS: This study reflects on the development of HOMEBASE, a network of integrated youth service delivery in Saskatchewan, Canada, and documents the process of actively and authentically engaging with youth through distributive leadership in the codesign process. FINDINGS: Youth are actively and eagerly willing to participate in the codesign process of developing integrated services when there is a shared responsibility, and they are authentically involved and informed within the decision-making process. This requires time to form trust, build relationships and provide youth with low-pressure environments to foster healthy debates. CONCLUSION: By utilizing a distributive leadership approach, the Youth Codesign Team has been engaged in various levels of decision-making. By following these guiding principles, policymakers, youth development workers and researchers can engage youth in meaningful ways to improve the design and development of integrated care. PATIENT OR PUBLIC CONTRIBUTION: Five youths from the HOMEBASE Provincial Youth Co-Design Team collaborated in writing this article based on their experiences of being engaged at varying levels of decision-making in a distributive leadership approach to building integrated youth services.

BACKGROUND: Comorbidity of musculoskeletal (MSK) and mental health (MH) problems is common but challenging to treat using conventional approaches. Integration of conventional with complementary approaches (CAM) might help address this challenge. Integration can aim to transform biomedicine into a new health paradigm or to selectively incorporate CAM in addition to conventional care. This study explored professionals' experiences and views of CAM for comorbid patients and the potential for integration into UK primary care. METHODS: We ran focus groups with GPs and CAM practitioners at three sites across England and focus groups and interviews with healthcare commissioners. Topics included experience of co-morbid MSK-MH and CAM/integration, evidence, knowledge and barriers to integration. Sampling was purposive. A framework analysis used frequency, specificity, intensity of data, and disconfirming evidence. RESULTS: We recruited 36 CAM practitioners (4 focus groups), 20 GPs (3 focus groups) and 8 commissioners (1 focus group, 5 interviews). GPs described challenges treating MSK-MH comorbidity and agreed CAM might have a role. Exercise- or self-care-based CAMs were most acceptable to GPs. CAM practitioners were generally pro-integration. A prominent theme was different understandings of health between CAM and general practitioners, which was likely to impede integration. Another concern was that integration might fundamentally change the care provided by both professional groups. For CAM practitioners, NHS structural barriers were a major issue. For GPs, their lack of CAM knowledge and the pressures on general practice were barriers to integration, and some felt integrating CAM was beyond their capabilities. Facilitators of integration were evidence of effectiveness and cost effectiveness (particularly for CAM practitioners). Governance was the least important barrier for all groups. There was little consensus on the ideal integration model, particularly in terms of financing. Commissioners suggested CAM could be part of social prescribing. CONCLUSIONS: CAM has the potential to help the NHS in treating the burden of MSK-MH comorbidity. Given the challenges of integration, selective incorporation using traditional referral from primary care to CAM may be the most feasible model. However, cost implications would need to be addressed, possibly through models such as social prescribing or an extension of integrated personal commissioning.

Integrated care facilitates better outcomes for patients and their family, health workforce and health and social care systems. Accordingly, integrated care is a global and inherent area of work for health professionals. Despite this, formal learning programmes for workforce development in integrated care are still rare. In this paper, I have shared lessons about developing an innovative and sustainable integrated care learning programme for teachers, practitioners and learners in integrated care discipline. These lessons are drawn from my experience of leading an integrated care specialisation programme (that sits at Australian Qualification Framework Level 9) at a public university in Australia. An integrated care learning programme should be designed with appropriate philosophies (e.g., social constructivism and connected learning) and relevant multidisciplinary content that addresses deficiencies in practices of integrated care. Moreover, the programme should aim for sustainability, through financial feasibility and continuity with offering of creative and effective solutions in integrated care. Similarly, the programme should have a suit of curriculum development and teaching initiatives to promote genuine and collaborative learning. Throughout this learning journey, it would be critical for teachers to engage in 'walking-the-talk', that is, genuinely collaborate with patients, practitioners and students, for successful delivery of an innovative and sustainable learning programme.