Home care needs assessment among caregivers of children and adolescents with osteogenesis imperfecta: a cross-sectional study

TL;DR

This study finds that most caregivers of children with osteogenesis imperfecta have high home care needs, especially for physical exercises, medication understanding, and pain relief.

Contribution

The study provides new insights into unmet home care needs for families of children with osteogenesis imperfecta in China.

Findings

81.5% of caregivers reported high home care needs.

The top needs were physical fitness recovery exercises, medication understanding, and pain relief.

Poor self-care ability in patients significantly increased caregivers’ home care needs.

Abstract

Children and adolescents with complex medical issues need home care services; however, few studies have provided insight into the unmet home care needs of the families of patients with osteogenesis imperfecta (OI). In this study, we aimed to assess the home care needs of caregivers of children and adolescents with OI and the associated factors.

A self-administered questionnaire was administered online to 142 caregivers of patients with OI aged 3–17 years between May and October 2022 from 25 provinces in China. The questionnaire comprised 15 questions on demographic variables and 14 questions on home care needs. Chi-square analysis was used to compare group differences for categorical variables. Multivariate binary logistic regression analysis was conducted to examine predictors of caregivers’ home care needs.

The study findings indicated that 81.5% of caregivers had high home care needs. The three leading types of home care needs were helping the child carry out physical fitness recovery exercises at home (72.5%), understanding precautions regarding treatment drugs (72.5%), and relieving the child’s pain (70.4%). OI patients’ poor self-care ability (adjusted odds ratio = 5.9, 95% confidence interval = 1.8–19.0) was related to caregivers’ high level of home care needs.

The findings of this study suggest that future scientific research and nursing guidance should focus on OI patients’ physical training, medication management, pain relief, fracture prevention, and treatment. In addition, caregivers of patients with poor self-care ability should receive special attention in the development of interventions. This study can help with addressing the unmet home care needs of caregivers of children and adolescents with OI. It is vital to develop a personalized intervention plan based on patients’ self-care ability.

The online version contains supplementary material available at 10.1186/s12875-024-02367-8.

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