Background
Healthy siblings and parents of people with a chronic neurodevelopmental condition can experience associated stresses that impact on their personal, social development, wellbeing and family quality of life. Complex multi-system neurogenetic conditions, such as Prader-Willi Syndrome (PWS), Williams syndrome (WS), and Down syndrome (DS) are characterised by global developmental delays affecting typical functioning. In addition, the specific difficulties associated with these chronic neurodevelopmental syndromes, such as life-long hyperphagia in PWS, unreserved friendliness with strangers in WS, and hearing and communication in DS, compound the challenges faced by the family. Disability research exploring the impacts on family has tended to rely on parental reports. However, understanding the lived experiences of siblings is essential for designing appropriate interventions to address family support needs and to enhance quality of life.
Research methodology
Three-stage mixed methods study with the parents and siblings of individuals with a learning disability. Stage 1: Qualitative study using semi-structured online, and in-person focus groups; Stage 2: Online survey; Stage 3: Consensus meeting to get an insight into the support needs.
Training
To include evidence synthesis, quantitative and qualitative research methods, consensus research, writing for publication, Thesis preparation, dissemination, and personal and career development.
Person specification
This project is suitable for someone with a good first degree (at least 2:1) and preferably a Masters in a related topic area (e.g., Psychology, Speech and Language Therapy, Communication Sciences, Social Work or Research Methods) or equivalent research experience. The prospective candidate will have an interest in learning disabilities/early intervention/family studies and will be a motivated and independent learner.
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