University of East Anglia Research Calls for Family-Centred Support in Prader-Willi Syndrome

University of East Anglia Research Calls for Family-Centred Support in Prader-Willi Syndrome

(IN BRIEF) Researchers at the University of East Anglia have examined how growing up with a sibling who has Prader-Willi syndrome affects emotional wellbeing and family life. Reviewing more than 20 years of research, the study found that siblings often experience stress, loneliness, and emotional fatigue, frequently taking on caregiving responsibilities and adapting to restrictive family routines. While some develop resilience, the findings highlight a clear lack of targeted support. The researchers call for family-centred approaches that recognise siblings’ evolving needs and provide long-term, personalised support.

(PRESS RELEASE) NORWICH, 7-Jan-2026 — /EuropaWire/ — New research led by the University of East Anglia has brought fresh attention to the often-overlooked experiences of siblings growing up alongside a family member with Prader-Willi syndrome, revealing the emotional and practical pressures many face from an early age.

Prader-Willi syndrome is a rare genetic condition associated with learning difficulties, behavioural challenges, and an ongoing need for medical and lifestyle management, particularly due to a constant sensation of hunger that can lead to serious health risks. While the condition’s impact on those diagnosed has been well documented, its effect on brothers and sisters has received far less scrutiny.

The newly published study highlights that siblings frequently experience elevated levels of stress, isolation, and emotional strain. Many take on additional responsibilities within the household, often adapting their own needs around the demands of managing the condition. Family routines are commonly shaped by strict controls around food and behaviour, which can limit everyday social activities and create tension within the home.

Led by Dr Meghana Wadnerkar Kamble from UEA’s School of Psychology, the research reviewed more than two decades of academic literature. From thousands of studies published between 2000 and 2024, only a small number directly examined sibling experiences, underscoring a significant gap in research and support.

By analysing these studies collectively, the research team identified recurring themes including emotional fatigue, anxiety linked to unpredictable behaviour, and the early assumption of caregiving roles. Siblings often reported feelings of loneliness and concern about adding to their parents’ burden, which in turn limited open communication within families. Everyday activities such as eating out, celebrations, or spontaneous social events were frequently described as difficult or unmanageable.

Despite these challenges, the research also noted examples of resilience. Some siblings developed strong coping skills and emotional maturity over time. Practical strategies, such as engaging their brother or sister in structured activities, helped reduce stress, while short periods of respite — when the individual with Prader-Willi syndrome was cared for elsewhere — provided important relief.

The findings emphasise that sibling wellbeing is closely tied to the wider family environment. As a result, the researchers advocate for a family-centred approach to both future research and support services, recognising that siblings’ needs evolve across different stages of life.

Dr Wadnerkar Kamble said the study highlights the importance of acknowledging siblings as individuals with their own support needs. She added that listening to siblings’ experiences and embedding family-focused support into care pathways is essential for improving wellbeing in families affected by rare genetic conditions.

The study was conducted by the University of East Anglia in collaboration with the Prader-Willi Syndrome Association UK, which provided funding for the research. The findings are published in the Journal of Applied Research in Intellectual Disabilities.

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SOURCE: University of East Anglia