At Parkinsons.Me we are committed to working with other groups and organisations who are working to find better ways for families to live with the condition.
We are at the beginning of this process and have invited expressions of interest from experienced researchers or research students to work with us to move this agenda forward. Equally we welcome expressions of interest from potential partner organisations interested in collaborating on this important topic.
From our initial studies, it appears that:
Research completed in 2004 and 2011 by David Morley et al specifically into the effect of being the child of someone with Parkinson’s concluded there was a significant impact on their health and wellbeing. The recommendation at that stage was the need for further research.
Kate Greenwell et al 2014 competed a systematic review of 29 studies entitled Predictors of the Psycho social Impact of Being a Carer of People Living with Parkinson’s. This concluded that there was a lack of clear evidence due to a paucity of studies that measured factors consistently. However, she also concluded that future studies should build upon psycho social theory to gain a better understanding of the mechanisms that explain how carers adapt to care-giving.
Studies published more recently by Jo Aldridge from Loughborough University in 2016 and 2017 looked at the needs of young carers more widely. In both qualitative and quantitative studies she confirmed findings of previous research into the impact of caring for a parent on children.
Young carers found their role rewarding regardless of their age or the length of time they had been caring. However the value of early intervention and support is recognised as critical to avoid children taking on inappropriate caring tasks. It also ensures access to accurate information and understanding of the parent's condition.The research found that parents struggled to discuss their condition with their children and to give them accurate information. Young carers who experienced limited support accompanied by a lack of understanding of their parents condition experienced adverse emotional effects.
Young carers interviewed by the study felt the opportunity provided by specific projects resulted in important support and respite. They identified the importance of someone to talk to about their concerns. The value of spending time with other young carers with whom they had a shared experience. They also valued the opportunity for practical support eg. skills sessions and planning for transition stages in life, like changing schools or going onto university.
The research found school support varied a great deal. Whilst parents and young carers identified the importance of support from teachers to enable children to complete their studies.
If you are interested in partnering with Parkinsons.Me to explore these issues in more detail and help develop guidelines for best practice, please contact us - there seems to be a lot to do!