Perceptions of Parents of Children with Cerebral Palsy About the Relevance of, and Adherence to, Exercise Programs: A Qualitative Study

Abstract

Exercise programs, to be implemented by families at home and support workers in school, are often characterized as prescriptive and focused on the child's impairment. These need to be integrated into a more holistic approach that considers family and child preferences. If this is to be achieved, parents' perspectives must play a legitimate part in evaluating the effectiveness of practice.

Using family and staff experiences of a botulinum toxin‐A service to improve service quality

“…The themes reported by our study are also similar to those suggested in studies of families' experiences of other paediatric rehabilitation services and interventions—that while families' experiences are both individual (Nijhuis et al, ) and change over time (Piggot, Paterson, & Hocking, ), families value being included as part of their child's care team and being empowered to make decisions regarding their child's treatment (Kruijsen‐Terpstra et al, ), communication between agencies (Peplow & Carpenter, ), having access to a network of people with similar experiences (Knis‐Matthews et al, ), and acknowledgement of their broader circumstances (Kruijsen‐Terpstra et al, ). Priorities for service improvement activities to move towards greater family‐centred services should therefore focus on these areas (see Box ).…”

Determinants of parent‐delivered therapy interventions in children with cerebral palsy: A qualitative synthesis and checklist

“…1126–1127). Such a relationship can be disrupted via a high turnover of staff (Basu, Pearse, Baggaley, Watson, & Rapley, ; Peplow & Carpenter, ; Piggot et al, ) or a change in the quality of support provided to the family from health care professionals (Peplow & Carpenter, ). Strengthening the parent–child bondWhen there is a clear positive parent–child relationship that facilitates “physical, interactional and emotional” aspects (Basu et al, , p. 9), the likelihood of engagement from young children increases.…”

“…1126–1127). Such a relationship can be disrupted via a high turnover of staff (Basu, Pearse, Baggaley, Watson, & Rapley, ; Peplow & Carpenter, ; Piggot et al, ) or a change in the quality of support provided to the family from health care professionals (Peplow & Carpenter, ).…”

“…The development of parental empowerment and capability is a dynamic process; health care professionals should be aware of this dynamic process and support its growth (Kruijsen‐Terpstra et al, ; Piggot et al, ). One way to help parents feel more capable is to incorporate a user‐friendly approach, which fits easily into their daily routines (Basu et al, ; Hinojosa, ; Hinojosa & Anderson, ; James et al, ; Novak, ; Peplow & Carpenter, ; Piggot et al, ; Taylor et al, ). Finding supportMaintaining a support network with family members and surrounding peers is crucial for parental mental health (Hinojosa, ; James et al, ; Whittingham, Wee, Sanders, & Boyd, ) and is a key ingredient for parental empowerment (Kruijsen‐Terpstra et al, ; Peplow & Carpenter, ; Piggot et al, ). Piggot et al () found that one of the crucial determinants of acceptance was the surrounding “circumstantial support … received from family and others” (p. 1123).…”

Activity limitation in children with cerebral palsy and parenting stress, depression, and self‐esteem: A structural equation model

“…Considering the high level of stress in parents with CP, effective intervention strategies for reducing parental stress need to be developed. Parents of children with CP often perceive themselves as advocates for ensuring that their children receive optimal services, and more than 60% are vulnerable to parenting stress . Information on the factors affecting stress may have important implications for providing the appropriate services to these children and their parents.…”