Parents of children with rare diseases benefit from intensive support programmes

Intensive support programmes can help parents of children with rare diseases reduce their stress levels and improve their quality of life, according to research published in the latest Journal of Advanced Nursing.

244 parents attending a national centre for families of children with rare disabilities took part in a study led by a team at Gothenburg University.

This aimed to measure the effect of a series of five-day programmes, each covering a particular illness and involving about 10 families from all over Sweden.

The sample was made up of 136 mothers and 108 fathers caring for 142 children with a rare illness, which is defined in Sweden as one that affects less than 100 people per million.

Factors affecting the parents' overall life satisfaction changed after they got involved in the programme, with a clear shift of emphasis from internal to external issues.

Before the initiative, the parents - who were surveyed before the programme and six and twelve months after it took place - said that their main worries were related to feelings of strain, parental incompetence and social isolation.

After the programme, they put greater emphasis on external demands such as problems with their spouse, paid work and social networks.

"Mothers were more likely to experience high stress levels and physical and emotional strain, with single mothers who made up ten per cent of the female sample recording the highest levels" says lead author Dr Lotta Dellve, a registered nurse and Associate Professor at the University.

"Fathers experienced high stress related to feelings of incompetence, which decreased after the intervention, as did the strain experienced by the 24 per cent of mothers and 87 per cent of fathers who worked full time.

"Both mothers and fathers felt that the programme helped them to improve their knowledge and coping strategies and mothers felt that it also improved the levels of social support they received."

42 per cent of the children whose parents took part in the study were under seven years of age and a further 44 per cent were aged between seven and twelve. They had 15 different physical and behaviour-related disabilities.

The series of programmes the families took part in aimed to help them to handle everyday problems more effectively. They included:

  • Discussions and lectures led by specialists which focussed on the medical, social, education and caring aspects of the child's illness.
  • Information about Sweden's social service system and the benefits that parents were entitled to.
  • Special children's programmes led by a team of nurses, teachers and social workers. Aimed at the children and their siblings, these were adjusted to their age and needs.

"Those who showed the most benefit from the intensive family competence programme were fathers, full-time working parents and parents of younger children" says Dr Dellve.

"Our results underline the importance of professional teams working with mothers and father to improve their knowledge and skills when it comes to dealing with their child's illness."


For further information and press copies of the full paper contact
Annette Whibley, Wizard Communications
[email protected]

Notes to editors

  • Stress and well-being among parents of children with rare diseases: a prospective intervention study. Lotte Dellve, Gothenburg University, Sweden, et al. Journal of Advanced Nursing. Volume 53.4. Pages 392-402.
  • Journal of Advanced Nursing, which is celebrating its 30th anniversary in 2006, is read by experienced nurses, midwives, health visitors and advanced nursing students in over 80 countries. It informs, educates, explores, debates and challenges the foundations of nursing health care knowledge and practice worldwide. Edited by Professor Alison Tierney, it is published 24 times a year by Blackwell Publishing Ltd, part of the international Blackwell Publishing group.

Last reviewed: By John M. Grohol, Psy.D. on 30 Apr 2016
    Published on All rights reserved.