Family-Centred Care Study

The Designing Interventions to Improve Delivery of Health Care for Children with Inherited Metabolic Diseases and Their Families study (“Family-Centred Care study”) is a multi-phase project that aims to improve healthcare delivery for children with inherited metabolic diseases (IMDs). The Family-Centred Care study builds on previous CIMDRN interview research that highlighted challenges experienced by families while seeking care for a child with an IMD. 

Funding:  This work is supported by the Canadian Institutes of Health Research (Grant #PJT‐153230).

Phase 1: Families’ health care experiences (data collection complete; analysis underway)

This study aimed to comprehensively describe the healthcare experiences of children with IMDs and their families, using mixed methods (quantitative survey data and qualitative interview data). Guided by the Picker Principles of Patient-and Family-Centred Care, data was collected through a care map, healthcare experience questionnaires, and interviews.

Publications:

• Read the Phase 1 study protocol here.

• See preliminary results presented at the Garrod Symposium in 2022: Care Map results; Family management of IMD care; and caregiver perceptions of the COVID-19 pandemic on IMD health care.

• Read about the care map findings here.

Phase 2: Provider perspectives on barriers to and facilitators of family-centred health care delivery (data collection complete; analysis underway)

This study aimed to identify the challenges to providing family-centred health care for children with inherited metabolic diseases, from the perspectives of healthcare professionals. It also aimed to describe the facilitators (or resources) they use to deliver family-centred care, as well as strategies that may improve care. We conducted interviews with 32 healthcare professionals across Canada to discuss three important challenges identified by caregiver participants in Phase 1: gaps in care coordination, problematic family-provider communication, and lack of provider familiarity with IMD care in some healthcare settings.

Publications:

• Read the Phase 2 study protocol here.

• See preliminary results presented at the American Clinical Genetics Meeting in 2024 here.

Phase 3: Scoping review (completed)

To support our aim of developing interventions to improve health care for children with IMDs, we conducted a scoping review to identify recent family-centred interventions designed to improve experiences with care for children with chronic conditions.  We identified 61 family-centred care interventions described in recent publications.

Publications:

• Read the protocol here.

• Read the full scoping review here.

Future directions

From Phase 1 and 2, we will learn about the challenges to family-centred health care, from both the perspectives of families and healthcare professionals, as well as what contributes to positive experiences from families’ perspectives, and the resources that professionals currently have or need to provide family-centred care. Using these findings we plan to develop interventions (strategies, programmes or resources) to improve healthcare experiences for children with IMDs and their families. These interventions will be co-developed with families and healthcare professionals, and where appropriate, may build on the interventions identified in our scoping review (Phase 3).

Publications

For a complete list of publications from INFORM RARE and related research, click here.