Intensive Support Programmes Benefit Parents Of Children With Rare Diseases

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Intensive Support Programmes Benefit Parents Of Children With Rare

Diseases

http://www.medicalnewstoday.com/medicalnews.php?newsid=38282

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. "