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Supporting unaffected siblings and parents of individuals with learning disabilities - what and how? (WADNERKARKAMBLEM_U23FMH)


   Faculty of Medicine and Health Science

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  Dr Meghana Kamble  No more applications being accepted  Competition Funded PhD Project (Students Worldwide)

About the Project

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.  


Funding Notes

This PhD project is in a Faculty of Medicine and Health Sciences competition for funded studentships. These studentships are funded for 3 years and comprise UK fees, an annual stipend of £17,668 and £1,000 per annum for research training (RTSG). Overseas applicants (including EU) may apply but are required to fund the difference between Home and International tuition fees.

References


Caliendo, M., Lanzara, V., Vetri, L, Roccella, M., Marotta, R., Carotenuto, M., Russo, D., Cerroni, F., and Precenzano, F. (2020). Emotional–Behavioral Disorders in Healthy Siblings of Children with Neurodevelopmental Disorders. Medicina, 56:10, 1-13, DOI 10.3390/medicina56100491
Guite, J., Lobato, D., Kao, B., and Plante, W. (2004). Discordance between sibling and parent reports of the impact of chronic illness and disability on siblings. Children's Health Care, 33:1, 77-92.
Hedgeman, E., Ulrichsen, S., Carter, S., Kreher, N., Malobisky, K., Braun, M., Fryzek, J., and Olsen, M. (2017). Long-term health outcomes in patients with Prader-Willi syndrome: A nationwide cohort study in Denmark. International Journal of Obesity, 41:10, 1531-1538.
Lamsal, R., and Ungar, W. (2021). Impact of growing up with a sibling with a neurodevelopmental disorder on the quality of life of an unaffected sibling: a scoping review, Disability and Rehabilitation, 43:4, 586 594, DOI: 10.1080/09638288.2019.1615563
Wadnerkar Kamble, M., Lam-Cassettari, C., and James, D. (2020). Communication skills and communicative autonomy of prelinguistic deaf and hard-of-hearing children: Application of a video feedback intervention. Frontiers in Psychology, 11(1983). doi:10.3389/fpsyg.2020.01983
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