Family quality of life among families with a child who has a severe neurodevelopmental disability: Impact of family and child socio-demographic factors

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Highlights

  • Families having a child with a neurodevelopmental disability from Northern Israel represent a diverse population.

  • FQOL scores in this population were overall average.

  • Socio-demographic factors impacted on FQOL.

  • FQOL should be considered when providing intervention recommendations.

Abstract

We aimed to examine family quality of life (FQOL) of Northern Israeli families having a child with a severe neurodevelopmental disability and its relation to socio-demographics. The cohort included caregivers of 70 children ages (mean ± standard deviation) 5.36 ± 3.53 years. Families were two-parent (85.7%), lived in the periphery (67.1%) and included Jews (60%), Muslims (18.6%), Druze (14.3%) and Christians (7.1%). Religiosity included: secular (38.6%), traditional (31.4%), religious (30%). Children's diagnosis included autistic spectrum disorder (41.4%), intellectual disability (21.4%), cerebral palsy (17.1%), genetic syndromes (17.1%) and sensorineural hearing loss (2.9%). Degree of support (1-minimal,5-greatest) required by the child was 3.67 ± 1.28 for physical and 3.49 ± 1.36 for communication. Primary caregivers completed the FQOL Survey. Domain scores were highest for family relations and lowest for financial well-being. Dimension scores were highest for importance and lowest for opportunities. Overall FQOL approximated average. Jewish families and residents of a major urban area reported higher and more religious families reported lower overall FQOL. Regression analysis found ethnicity contributing to overall FQOL and domain scores with residence contributing to support from services. Ethnicity and child dependence contributed to dimension scores. Northern Israeli families having a child with a severe neurodevelopmental disability report average FQOL scores. However, family and child dependence characteristics affect FQOL scores. Professionals working with these families should consider FQOL information when making recommendations.

Section snippets

What this paper adds

This paper expands our understanding regarding the use of the FQOL measure in a number of ways. Locally it adds specific socio-demographic information to that previously known about the Israeli population in those families having a child with a severe neurodevelopmental disability. Of interest to the larger audience is the examination of the relationship between FQOL scores and child and family characteristics. We found both of these to impact on the FQOL scores reported. Finally this is one of

Inclusion/exclusion criteria

This study included a convenience sample of parents/legal guardians of children with a severe neurodevelopmental disability who received services from the Meuhedet Health Maintenance Organization, one of four serving the population in Israel.

Subjects were included if they

  • Resided in northern Israel (defined for the purposes of this study as place of residence located north of the city of Hadera, Israel). Northern Israel, not including the Hadera area, measures 5104 square kilometers out of a

Results

The domain and dimension scores are organized as a matrix. The mean Total Domain Means score is the average of all dimensions, which compose the specific domain. Similarly, the mean Total Dimension Means score is the average of all domains, which compose the specific dimension. The means of each of the nine domains across the six dimensions for the sample are shown in Table 3. Domain scores (mean ± sd) ranged between 3.99 ± 1.06 for family relations and 3.12 ± 1.19 for financial well-being.

Discussion

Parents raising a child with a severe neurodevelopmental disability in Northern Israel reported FQOL ratings that were about average (on a Likert scale of 1 to 5) in almost all domains and dimensions examined. However, of greater importance was our identification of relationships between family and child characteristics and the overall FQOL and different domains and dimensions scores composing family quality of life.

Funding source

Meuhedet supported this project internally

Acknowledgements

We are extremely grateful to the families who participated in this study and to Shira Barak, Naama Eldar and Sawsan Asadi for data collection.

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