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Psychosocial Well-Being and Caregiving Challenges Among Parents of Children With 1p36 Deletion Syndrome
Motoko Watanabe1,2, Chieko Kibe3, Masumi Sugawara4
1Department of Clinical Genetics, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Insights
Parents of children with 1p36 deletion syndrome face limited specialist information and varied challenges. Affiliate stigma impacts parental mental health, highlighting the need for tailored psychosocial support.
Area of Science:
- Genetics
- Psychology
- Pediatrics
Background:
- 1p36 deletion syndrome is a genetic disorder causing developmental delay and distinct facial features.
- While diagnostic methods have improved, the psychosocial impact on parents remains understudied.
- This study investigates the parenting experiences of individuals with 1p36 deletion syndrome.
Purpose of the Study:
- To explore the psychosocial experiences of parents raising children with 1p36 deletion syndrome.
- To assess the relationship between affiliate stigma, parental strain, self-esteem, and mental health outcomes.
- To identify challenges and information needs of parents across different developmental stages.
Main Methods:
- A questionnaire survey was distributed to parents of children with 1p36 deletion syndrome via a Japanese family association.
- Data collected included parent/child characteristics, information sources, and syndrome-related challenges.
- Parental mental health was evaluated using measures of psychological distress, well-being, affiliate stigma, strain, and self-esteem.
Main Results:
- Thirty-nine parents responded; the mean child age at diagnosis was 1.9 years.
- Parents primarily used the internet for information, with limited input from medical/genetic specialists.
- Affiliate stigma was higher compared to parents of children with Down syndrome, and mediated by parental strain and self-esteem.
Conclusions:
- Parents encounter challenges in accessing specialist information and face evolving medical/welfare issues.
- High levels of affiliate stigma were observed, impacting parental mental health.
- Psychosocial support should address affiliate stigma and adapt to developmental changes.
Background:
The 1p36 deletion syndrome is a subtelomeric deletion syndrome characterized by developmental delay, epilepsy, and distinctive facial features. The diagnostic rate has improved with advances in genetic testing, including chromosomal microarray analysis. However, little is known about the psychosocial impact of a child's diagnosis on parents. This study aimed to explore the psychosocial experiences related to parenting among parents of children with 1p36 deletion syndrome.
Methods:
The questionnaire survey was conducted among parents of children with 1p36 deletion syndrome, through the Japanese family association related to the syndrome. The questionnaire included items on the characteristics of parents and their children, information sources for 1p36 deletion syndrome, and complications and issues related to this syndrome. Parental mental health was assessed using measures of psychological distress and subjective well-being, with affiliate stigma examined as a key factor associated with mental health outcomes, along with other psychological variables including parental strain and self-esteem.
Results:
Thirty-nine parents (mean age: 43.1 years) responded to the questionnaire. The mean age of the child at diagnosis was 1.9 years. Most parents obtained information from the internet, and information from medical and genetic specialists was limited. Parental challenges in medical and welfare aspects were diverse and varied by the child's developmental stage. Exploratory path analysis suggested that the association between affiliate stigma and mental health may be mediated by parental strain and self-esteem. Furthermore, affiliate stigma was significantly higher in parents of children with 1p36 deletion syndrome than in those with Down syndrome.
Conclusions:
Parents of children with 1p36 deletion syndrome experience limited access to information from medical and genetic specialists, diverse medical and welfare challenges across developmental stages, and potentially high levels of affiliate stigma. These findings suggest the need for psychosocial support that considers the potential impact of affiliate stigma and is tailored to the evolving challenges experienced across the child's developmental stages.
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