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Recently completed projects

Comparison of the expressed experiences of survivors of childhood medulloblastoma with measures of health and quality of life, and with issues identified during consultations: improving responses to problems 2014

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ActionforChildrenMeasures of health status, quality of life, and psychological wellbeing were completed with 21 patients aged 11-39 years followed by individual interviews to elicit the problems experienced since diagnosis. Medical records were scanned. Patients showed severely impaired health, with an increasing burden of disabling health problems. Diminished quality of life in most functions was evident: issues of psychosocial health (including social and school functioning) becoming greater problems than physical functioning. Deficits in cognitive functioning exerted a serious impact on quality of life, as did pain. Family functioning was negatively affected in almost all cases. Despite multiple physical and cognitive deficits, younger patients retained aspirations to achieve more in life, and they sought a more positive response from schools and services. For the adult group, the lifelong impact of the tumour and associated treatment predominated, followed by limited opportunities to secure work (linked to discrimination). The medical record focused more on oncological and endocrinological treatment, investigation, and physical functioning. Clinical text mining demonstrated the imbalance in perspectives of doctors and patients.

Funded by the Christie Hospital Paediatric Oncology Charitable Fund

Study completed in collaboration with the University of Manchester School of Computer Science

For more details contact Professor Tony Long 

The impact of Action for Children Supported Housing, Supported Tenancy and Pre-Tenancy Support services on outcomes for young women and their families (2011)

These three combined services were evaluated using documentary analysis, questionnaires and interviews with service staff, and arts-based focus groups with service users. The services impacted positively and in a lasting manner on the lives of those who accessed any of them. They were valued by external partners and referring agencies, and they were cost-effective when compared to valid alternative scenarios. An added value of the services was the heightened surveillance of young infants that had led to timely, early intervention to safeguard children while providing the necessary support to their mothers working towards being reunited with their babies.

Funded by Action for Children

For more details contact Dr Joan Livesley

Evaluation of the Royal Northern College of Music ‘Medical Notes’ project at the Royal Manchester Children’s Hospital (2012)

music for health and LIME artsExploring outcomes for children, their families, staff and musicians involved in music-making activities with hospitalised children involved field-work observations; conversations with children, their families and members of staff; and individual and focus group interviews with project staff, play specialists, musicians and trainee musicians. A musical workshop was held in the Teen Zone to elicit views and opinions of young people. The calm, relaxation and distraction derived for the children were remarkable. Parents reported improved relationships, and they were able to express emotions that had been suppressed. Music-making exerted a humanising impact on the hospital environment. The health and music professionals had created and sustained effective working relationships. Teen Zone participants were particularly emphatic that music-making offered clear benefits for children and that it should be rolled out all areas of the hospital.

Funded byYouth Music

For more details contact Dr Joan Livesley

Exploration of what young people who are suicidal and their guardians want from mental health services 2013

Globally, the incidence of adolescent self-harm and suicide behaviour has increased. Large numbers of adolescents who self-harm do not seek professional help, and as the behaviour escalates so does the risk of suicide. Locally, a rise in reported and unreported rates of self-harm and a number of suspected child suicides prompted the commissioning of this project, the aim being to ascertain young people’s and guardians experiences of accessing help for self-harm and how future needs could best be met. Qualitative research, adopting interpretive phenomenological analysis (IPA), was used to elicit narratives of those affected by self-harm. Data was collected via 1:1 interviews and analysed in two stages; analysis of each individual narrative and thematic analysis across the two groups. In conclusion, mental health nurses have a vital role in providing knowledge and support to those likely to have initial contact with this vulnerable group and to the wider population, ensuring this risky behaviour is more effectively addressed.

Funded by NHS Mersey

For more details contact Dr Sue McAndrew