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A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life

Luijkx, J., van der Putten, A. A. J. & Vlaskamp, C., 3-Apr-2019, In : Journal of intellectual & developmental disability. 44, 2, p. 184-189 6 p.

Research output: Contribution to journalArticleAcademicpeer-review

Background: This study analysed parents' positive and negative appraisals of the impact of raising children with profound intellectual and multiple disabilities (PIMD) on family life. Method: Mothers (n = 52) and fathers (n = 27) of 56 children with PIMD completed a questionnaire focused on their positive and negative appraisals of the impact of childhood disability on family life. Scale means (ranging from 10 to 40) were calculated, as was the relationship between the two subscales. Results: Mothers and fathers indicated that their children affect family life both positively (M = 31.4 and 32.8, respectively) and negatively (M = 31.3 and 28.5, respectively). Only fathers showed a positive significant relationship between the positive and negative subscales. Conclusions: Parents' positive and negative appraisals co-occur. Although parents positively appraise the impact on family life, their substantial negative appraisals demand tailored support for families raising children with PIMD with a strong focus on practical support.

Original languageEnglish
Pages (from-to)184-189
Number of pages6
JournalJournal of intellectual & developmental disability
Volume44
Issue number2
Early online date5-Jul-2017
Publication statusPublished - 3-Apr-2019

    Keywords

  • Profound intellectual and multiple disabilities, intellectual disability, parents, mothers, fathers, impact on family life, CHILDHOOD DISABILITY, YOUNG-CHILDREN, CEREBRAL-PALSY, TIME USE, PARENTS, PERCEPTIONS, ADJUSTMENT, STRESS, SYSTEM, CARE

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