The MM‐CGI Cerebral Palsy: modification and pretesting of an instrument to measure anticipatory grief in parents whose child has cerebral palsy

Aims and objectives To establish the potential of a modified version of the MM‐CGI Childhood Cancer to assess anticipatory grief in parents of children with cerebral palsy, to amend the existing scale for use with the specific patient group, to test the psychometric properties of the modified version (MM‐CGI Cerebral Palsy) and to review the clinical potential of the new scale. Background Parents of children with cerebral palsy may experience reactions similar to parents of children with other enduring or life‐limiting conditions, and anticipatory grief may be one such psychological reaction. While the burden of caring is sometimes balanced by positive perceptions of the child, which enhance coping ability, for many parents the outcome is damage to their physical and mental health and impaired family functioning. Design A cross‐sectional, descriptive, correlational design. Methods The MM‐CGI Cerebral Palsy was administered in structured interviews with 204 parents. Standardised measures of caregivers' depression, stress and perceived social support were also administered. Mothers and fathers were recruited from healthcare centres and schools for special education. Cronbach's alpha was used to assess internal consistency, and Pearson's product–moment correlation was used to assess construct validity. Results The subscales were each found to measure a single dimension of anticipatory grief, and significant correlations were established with existing instruments. The instrument demonstrated excellent internal consistency reliability and good construct validity. Conclusions The MM‐CGI Cerebral Palsy could be useful for diagnosing anticipatory grief among parents of children with cerebral palsy. This preliminary work moves the programme on to testing in intervention studies. Relevance to clinical practice In the absence of an existing measure for the assessment of anticipatory grief, specifically in parents of children with cerebral palsy, the MM‐CGI Cerebral Palsy could prove to be an effective assessment tool for clinicians and researchers.