'I Call Them Our Village': Experiences Of Caregivers in Ontario's Extensive Needs Service

Children and youth with complex needs, including neurodevelopmental disabilities or acquired brain injuries and co-occurring mental health and physical health diagnoses, often experience difficulties accessing care that they need. Three Ontario children's hospitals collaborated to form the Extensive Needs Service (ENS), a novel interdisciplinary programme that provides wraparound services for this population. Caregiver perspectives are essential to understand the child- and family-level benefits and experiences of interdisciplinary programmes such as the ENS.

The objective of this study was to explore the experiences that caregivers had while their child participated in the ENS.

We used a qualitative descriptive design from a constructivist paradigm. Purposive sampling was used to garner diverse representation in child gender, caregiver race and/or ethnicity, socio-economic status and ENS site. The interview guide was developed to evaluate key programme domains including family functioning, goal achievement, quality of life, service use and satisfaction. Individual, semi-structured interviews were conducted, transcribed verbatim and analysed by multiple coders using reflexive thematic analysis.

We interviewed 29 caregivers with diverse representation across sites and demographic characteristics. We identified five key themes: (1) inadequate care experiences prior to the ENS; (2) met and unmet expectations of the ENS; (3) benefits of the ENS for the whole family; (4) the power of big and small changes; and (5) reluctant but ready to leave the programme.

Caregivers entered the ENS programme after repeated inadequate care experiences. In stark contrast, they found that the ENS met or exceeded their expectations and provided tangible benefits through openness, adaptability, compassion and championing the autonomy of the child and family. Upon discharge, caregivers felt emboldened to better support their child and to manage day-to-day challenges. Programmes across the continuum of care should adopt similar principles of personalized, compassionate care to support children with complex needs and their families.