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The first year: the support needs of parents caring for a child with an intellectual disability
Tracy Douglas1, Bernice Redley2,3, Goetz Ottmann4,5
1Deakin University, School of Nursing and Midwifery, Burwood, Victoria, Australia. tracydouglas93@gmail.com.
Insights
Parents of children with intellectual disabilities need emotional, informational, and peer support in the first year. Health professionals, including nurses and midwives, must provide timely and responsive care to enhance parental well-being and child development.
Area of Science:
- Developmental Psychology
- Parenting Studies
- Healthcare Support Systems
Background:
- The first year of life is critical for children with intellectual disabilities, yet parental support during this period is under-researched.
- Health professionals' support significantly influences parental well-being and child outcomes.
- Parents often report feeling unsupported during this crucial developmental phase.
Purpose of the Study:
- To identify and describe the specific support needs of parents raising a child with an intellectual disability during the child's first year.
- To inform healthcare providers on delivering effective and timely support to these families.
Main Methods:
- Qualitative descriptive study utilizing semi-structured interviews.
- Interviews conducted with eleven parents of children with intellectual disabilities in Victoria, Australia.
- Thematic data analysis applied to transcribed interview data.
Main Results:
- Parents require emotional support for adjusting to their caregiving role.
- Information support is crucial as parents seek knowledge about their child's condition.
- Facilitating connections to peer support networks is a key need.
Conclusions:
- Healthcare professionals need to offer holistic and timely support to parents of children with intellectual disabilities.
- There is a critical need to reassess how nurses and midwives can better meet parental support needs.
- Responsive and individualized support is essential for improving family well-being and child development.
Aim:
To describe the support needs of parents caring for a child with an intellectual disability in the first year of life.
Background:
Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported.
Design:
The study used a qualitative descriptive methodology.
Methods:
Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis.
Findings:
Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents.
Conclusion:
This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs.
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