biostudies-literatureChow AJCIHRe055664https://www.ebi.ac.uk/biostudies/studies/S-EPMC8867352biostudies-literatureUnknown12(2)<h4>Introduction</h4>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.<h4>Methods and analysis</h4>A two-stage explanatory sequential mixed methods design will be used. <i>Stage 1:</i> 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 netwBMJ openFamilies' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.PMC8867352PJT-153230Dyack SPender ATeitelbaum MKhangura SHayeems RZSchulze AJain-Ghai SProsser LAMajor NSpeechley Kvan Karnebeek CWilson KGillis LJWalia JSJolly AJordan IPotter MPotter BKPallone NNicholls SGSparkes RTrakadis YWilson BJMacKenzie JJGreenberg CRTingley KGraham IDStockler SSiriwardena KTaljaard MLamoureux MChan AGrimshaw JMGoobie SChow AJBrehaut JSmith MPrasad CChakraborty PMitchell JJIverson RAl-Baldawi ZCohen EfalseFamilies' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.<h4>Introduction</h4>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.<h4>Methods and analysis</h4>A two-stage explanatory sequential mixed methods design will be used. <i>Stage 1:</i> 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 netw2022-01-01T00:00:00Z2022 Feb2025-04-04T20:23:35.145Z2025-04-04T20:23:35.145ZS-EPMC88673523519391910.1136/bmjopen-2021-055664