Parents' perceptions of the quality of two intensive training programmes for children with cerebral palsy

Abstract

This study explored parents' perceptions of the service quality of two intensive training programmes and the association between perceived service quality and predefined influential factors. Parents of 31 males and 19 females with spastic, dyskinetic, and ataxic cerebral palsy (mean age 8y 7mo [SD 3y 7mo]; range 3-16y), and Gross Motor Function Classification System Level I n=1; Level II n=9; Level III n=8; Level IV n=20; and Level V n=12 were included. Functional outcome had been evaluated previously with the clinical measures Gross Motor Function Measure-88, the Pediatric Evaluation of Disability InventoryFunctional Skills, and the Self-reported Individualized Goal Measure, before and after a 4-week intensive training period (ITP). The two training programmes used were Lemo and Move&Walk. After the ITP, a telephone interview was performed with the same cohort, using the Patient perspective On Care and Rehabilitation process. Data on previous experiences, expectations, and severity of disability were collected before the ITP, and data on achieved expectations afterwards. Previous experiences of the training programme, high expectations of improvements, achieved expectations, gross motor capacity improvements, and intensive training at the child and youth rehabilitation centre were associated with increased probability of fulfilment of needs. Severity of disability was associated with decreased probability of fulfilment of needs and functional improvements. Most parents perceived high service quality, and achieved expectations were influenced by high service quality rather than by perceived functional improvements. This suggests that needs other than functional improvements must be explained and acknowledged.The influence of cerebral palsy (CP) on the functioning of the child is highly variable and gives rise to multiple health care needs. [1][2][3] It is generally thought that the child's needs should be seen in the context of the family and should be defined from the perspectives of both the family and the child in collaboration with health care providers. 4,5 The concept of familycentred services, as opposed to a provider-centred approach, is widely accepted and considered the best way to meet different needs. 4,6 When using a family-centred approach, quality evaluations are needed that measure aspects of the process as well as health and functional outcome. 4,7-9 Service quality could be seen as a measure of parents' perceptions of the rehabilitation process; i.e., the performance of health care providers in meeting value-based needs considered to represent important health care needs. 8 To take into account both professional and family perspectives on functional outcomes, traditional clinical measures should be complemented by measures of self-reported individualized goals. 4 Quality evaluations can help parents to make informed choices about which service to use and can help professionals to adapt intervention programmes to the needs of the child and family, thereby constituting a consumer influence on the...

Parents' conceptions of intensive group training. The case of cerebral palsy

“…If needed, further probing was performed to elucidate parents' thoughts or perception of the group setting, the environment, intensity and parent-participation as these were considered to be characterizing aspects IGT. Since previous studies had shown similar outcome on functioning and parents' perception of the service-quality between two IGT in these settings [14,22,23], no difference was made whether training was performed within a child and youth habilitation approach or with the conductive education (CE) approach. The sequence of asking questions varied and parents'…”

“…Parents and children had previous experiences of IGT that were completed or they were in a process of participating in repeated periods of IGT. Gross Motor Function Classification System (GMFCS) [14]. LEMO is an acronym for "Learning and motorfunction" and ITG is an abbreviation of "intensive training group".…”

“…Rephrasing and probing were used to get a deeper understanding [24] (p.162). The interviewer was not involved in delivering any of the IGT but had experience working with disabled children and evaluating intensive training for children with CP [14,22,23]. …”

“…Fulfilment of expectations of the two intensive training groups were rather associated with fulfilment of needs (such as time for communication, considerate and appropriate treatment, and understanding of the child's needs and problems) than functional improvements of the child [14]. Parents' satisfaction with treatment/training programmes are generally high with small differences between them [10][11][12]15].…”

Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives

“…Existing literature has primarily focused on caregiver evaluations of rehabilitation programs for individuals with cerebral palsy and traumatic brain injuries and has found factors such as service quality, functional improvements and information about community services to influence whether caregivers viewed rehabilitation as helpful. 9,10 Although much can be learned from these studies of families of youth with other types of disabilities, it is also important to understand the unique disease-specific consequences experienced by youth and their families. Specific research on the rehabilitation needs of youth with SCI is essential to making sure their psychosocial and physical needs are being met so that they can successfully transition into independent and productive adults.…”