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

Title

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

Creator

Chow AJ; Pugliese M; Tessier LA; Chakraborty P; Iverson R; Coyle D; Kronick JB; Wilson Kumanan; Hayeems R; Al-Hertani W; Inbar-Feigenberg M; Jain-Ghai S; Laberge AM; Little J; Mitchell JJ; Prasad C; Siriwardena K; Sparkes R; Speechley KN; Stockler S; Trakadis Y; Walia JS; Wilson BJ; Potter BK

Publisher

The Patient

Date

2021

Subject

children; Family; metabolic diseases; caregiver experiences; cross-sectional survey

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

September 2021 List

Collection

Citation

Chow AJ; Pugliese M; Tessier LA; Chakraborty P; Iverson R; Coyle D; Kronick JB; Wilson Kumanan; Hayeems R; Al-Hertani W; Inbar-Feigenberg M; Jain-Ghai S; Laberge AM; Little J; Mitchell JJ; Prasad C; Siriwardena K; Sparkes R; Speechley KN; Stockler S; Trakadis Y; Walia JS; Wilson BJ; Potter BK, “Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey,” Pediatric Palliative Care Library, accessed October 20, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17640.

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