Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.

ABSTRACT:

Introduction

Children with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interventions involving multiple components and stakeholders, customised to specific care contexts. This study aims to comprehensively understand the healthcare experiences of children with IMDs and their families across Canada.

Methods and analysis

A two-stage explanatory sequential mixed methods design will be used. Stage 1: quantitative data on healthcare networks and encounter experiences will be collected from 100 parent/guardians through a care map, 2 baseline questionnaires and 17 weekly diaries over 5-7 months. Care netw

SUBMITTER: Chow AJ 

PROVIDER: S-EPMC8867352 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature