Dataset Information

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.

ABSTRACT:

Background and objective

Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of family caregivers (parents/guardians) of children diagnosed with inherited metabolic diseases with healthcare to inform strategies to improve those experiences.

Methods

A cross-sectional mailed survey was conducted of family caregivers recruited from an ongoing cohort study. Participants rated their healthcare experiences during their child's visits to five types of healthcare settings common for inherited metabolic diseases: the metabolic clinic, the emergency department, hospital inpatient units, the blood laboratory, and the pharmacy. Participants provided narrative descriptions of any memorable negative or positive experiences.

Results

There were 248 respondents (response rate 49%). Caregivers were generally very or somewhat satisfied with the care provided at each care setting. Appropriate treatment, provider knowledge, provider communication, and care coordination were deemed essential aspects of satisfaction with care by the majority of participants across many settings. Memorable negative experiences were reported by 8-22% of participants, varying by setting. Among participants who reported memorable negative experiences, contributing factors included providers' demeanor, lack of communication, lack of involvement of the family, and disregard of an emergency protocol letter provided by the family.

Conclusions

While caregivers' satisfaction with care for children with inherited metabolic diseases was high, we identified gaps in family-centered care and factors contributing to negative experiences that are important to consider in the future development of strategies to improve pediatric care for inherited metabolic diseases.

SUBMITTER: Chow AJ

PROVIDER: S-EPMC8289623 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.

Chow Andrea J AJ Pugliese Michael M Tessier Laure A LA Chakraborty Pranesh P Iverson Ryan R Coyle Doug D Kronick Jonathan B JB Wilson Kumanan K Hayeems Robin R Al-Hertani Walla W Inbar-Feigenberg Michal M Jain-Ghai Shailly S Laberge Anne-Marie AM Little Julian J Mitchell John J JJ Prasad Chitra C Siriwardena Komudi K Sparkes Rebecca R Speechley Kathy N KN Stockler Sylvia S Trakadis Yannis Y Walia Jagdeep S JS Wilson Brenda J BJ Potter Beth K BK

The patient 20210720 2

<h4>Background and objective</h4>Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of family caregivers (parents/guardians) of children diagnosed with inherited metabolic diseases with healthcare to inform strategies to improve those experiences.<h4>Methods</h4>A cross-sectional mailed survey was conducted of family careg ...[more]

PMID: 34282509

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Dataset Information

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.

Background and objective

Methods

Results

Conclusions

Publications

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.

Similar Datasets

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