Pioneering research into the wider effects of coping with CGD on children and parents was presented recently at the International Nursing Group for Immunodeficiencies conference in the Netherlands.
As we are all aware, CGD has an impact not just on the individual affected, but the whole family. To date there have been few studies of the way CGD can affect all facets of everyday life and the research study, headed by Dr Penny Titman, at Great Ormond Street Hospital and involving Rhian Lant, our ex-CGD RT funded clinical nurse specialist, sought to find out more about what problems children and parents may experience and how psychological support might help to prevent them and provide solutions.
Dr Penny Titman explains: 'I work as a clinical psychologist at Great Ormond Street Hospital. My role as a psychologist includes studying how CGD affects the well-being of the affected child and family relationships, and to help families implement strategies to prevent or resolve problems. When we started our study there had been no specific studies done in the UK that looked at what the every day problems might be in CGD from the point of view of the child and family. We need this vital information so that we can help families to pre-empt the development of any problmes by planning for their healthcare needs. What we did was to ask children and families attending the GOSH clinics to take part in our research study. This involved the parents and children affected by CGD filling in questionnaires about how living with CGD affected their quality of life and what they felt were the most difficult issues for them to cope with.'
The results of the work backed-up anecdotal evidence. 'Our research studies showed that whilst there is a great deal of variation in the impact of CGD, growing up with CGD often affects quality of life for chuildren and families and this can lead to some emotional difficulties for a small number of children. Now that this is a recognised risk, we can plan to put the necessary support in place to reduce that risk. Our study also showed that parents of affected children reported the issue that caused the highest levels of stress was the feeling of helplessness and uncertainty about their child's condition over the long-term', said Dr Titman. 'THere are clearly many challenges ahead in helping families deal with these problems but I believe providing psychological support as an intergrated part of the clinic will help affected fmailies and break down barriers concnering the knock-on effects of the clinical condition. CGD RT, through its funding of psychological support services, is really helping in this area.'
'The key is providing flexible tailored help to people that is right for their needs and stage of coping with the condition and we need to do more research so that we can get this right. Any families that would like to discuss the issues raised by these studies should get in touch with me or Dr Nigel North. The more we learn, the more we can help. We are here to help you,' she added.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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