Stress and well-being among parents of children with rare diseases: a prospective intervention study

• AIM: This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention. BACKGROUND: Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders. METHOD: We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability. RESULTS: We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network. CONCLUSION: Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.

Subject headings

SAMHÄLLSVETENSKAP  -- Annan samhällsvetenskap -- Övrig annan samhällsvetenskap (hsv//swe)

SOCIAL SCIENCES  -- Other Social Sciences -- Other Social Sciences not elsewhere specified (hsv//eng)

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine (hsv//eng)

SAMHÄLLSVETENSKAP  -- Ekonomi och näringsliv (hsv//swe)

SOCIAL SCIENCES  -- Economics and Business (hsv//eng)

Keyword

Adaptation

Psychological

Adolescent

Child

Child Behavior Disorders/psychology

Child

Preschool

Disabled Children/psychology

Emotions

Fathers/psychology

Female

*Health Status

Humans

Infant

Male

Mothers/psychology

Parent-Child Relations

Parents/*psychology

Prospective Studies

Quality of Life

Rare Diseases/*psychology

Self Efficacy

Sex Factors

Social Support

Stress

Psychological/*psychology

disability

MEDICINE

Publication and Content Type

ref (subject category)

art (subject category)