Carer perspectives of the value of specialist residential weekends for young people with cancer


Year:

Session type:

Theme:

Ana Martins1,Rachel M Taylor1,Sue Morgan2,Jennie Bradley3,lorna A Fern1
1University College London Hospitals NHS Trust,2Leeds Teaching Hospitals NHS Foundation Trust,3Quality Health

Abstract

Background

Find Your Sense of Tumour (FYSOT) are two residential weekends for young people aged 13-17 and 18-24 years with cancer. The residential events bring together young people for educational presentations, motivational speakers, workshops and social events. Carers and significant others of young people attending have reported perceived benefits to young people, however this had never been formally evaluated. We sought to formally assess carers’ perception of potential benefits for young people attending FYSOT.

Method

Young people participating in a longitudinal evaluation of FYSOT nominated a carer or significant other to also participate. Significant others were sent a questionnaire prior to the young person attending FYSOT and at 3-months post event. The questions included the impact on psychosocial outcomes and quality of life. Carers could also leave comments if they wished.

Results

Seventy-three (49%) returned the baseline questionnaire, of whom the majority (n=56; 77%) were parents. Most respondents felt attending FYSOT had helped young people make friends (83%), helped them deal with reactions of others (82%), learn about him/herself (80%), feel better (80%), lessen their anxiety (75%), helped their ability to talk (73%), feel comfortable (70%) and accept the physical change caused by cancer (69%).

“I saw a dramatic change on returning home. Self-confidence was restored. Mixing with other young people and sharing stories normalised their situation. Listening to [name removed] was a life-changing moment for them and totally put things into perspective.”- Carer

There were no significant changes in perceived quality of life.

Conclusion

These results demonstrate improvements in psychosocial outcomes for young people with cancer from the perspective of their carer/significant other three months after FYSOT. There were no significant changes in perceived quality of life however; evidence exists to show parents often have a different perception of their child’s quality of life so can be interpreted with caution.