The importance of assessing parent stress in families with children with severe neuromotor and intellectual disability – a pilot study

Abstract

Parent-related stress represents the level of dysfunction in the parent–child system related to the parents’ functioning. The aim of this retrospective pilot study was to assess the degree of stress perceived by mothers and fathers, in the framework of a family-centred approach to rehabilitation.

We considered 43 parents of 29 children with cerebral palsy, genetic disorders or brain injury admitted to a neurological rehabilitation center. Parenting stress was assessed with the Parenting Stress Index – Short Form (PSI-SF) self-report questionnaire and a semi-structured investigation of situational stress factors of the family. The cognitive and motor disability of the children were assessed with the Diagnostic and Statistical Manual of Mental Disorders 5(DSM-5) and the Gross Motor Function Classification System-(GMFCS), respectively.

The results showed that parental stress is directly correlated with the level of cognitive and behavioral disability and not with motor disability. No significant difference was found in the level of stress perceived by mothers and fathers. The effect of a worsening occupational situation seemed to influence the perception of stress more than a change in the formal relationship of the couple, but neither was statistically significant.

Keywords:

• Acquired brain injury
• cerebral palsy
• family-centred rehabilitation
• genetic disorders
• parental stress

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all participants.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability statement

The datasets generated and/or analyzed during the current study are available from the corresponding author on request.