Family‐centred service: differences in what parents of children with cerebral palsy rate important

Terwiel, Michelle; Alsem, Mattijs; Siebes, R. C.; Bieleman, K.; Verhoef, M.

doi:10.1111/cch.12460

Cited by 23 publications

(30 citation statements)

References 19 publications

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“…However, a recent study reveals that parents will attach varying importance to each of the items, especially in the domain of Providing General Information. 29 Indeed, only 6 of the 56 items were rated as important by almost all parents. This is a limitation that will need to be addressed at the time of data collection in future studies on this topic.…”

Section: Discussionmentioning

confidence: 99%

“…The instrument (MPOC‐56) used in our study is by necessity a standardized one in which equal importance is assigned to each of the 56 items assessed. However, a recent study reveals that parents will attach varying importance to each of the items, especially in the domain of Providing General Information . Indeed, only 6 of the 56 items were rated as important by almost all parents.…”

Section: Discussionmentioning

confidence: 99%

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Family‐centred health care for children with cerebral palsy

Shevell

Oskoui

Wood

et al. 2018

Develop Med Child Neuro

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Aim To identify characteristics of young children with cerebral palsy (CP), and intrinsic and extrinsic factors, that may be associated with parental perceptions regarding family‐centred health care services. Method We conducted a cross‐sectional study, drawing our sample from the Canadian Cerebral Palsy Registry (CCPR). Parents rated the extent of family‐centred care provided by their child's health care teams using the 56‐item Measures of Process of Care (MPOC) questionnaire. Environmental and CP phenotypic variables were extracted from the CCPR for group comparisons. Low and high MPOC‐56 raters were also compared. Results Valid responses were obtained from 282 families (90%). All MPOC‐56 subscales were highly rated (median ≥6.0), indicating satisfaction with health care services, with the exception of the Providing General Information subscale (median 4.8, interquartile range 3.2–6.0). Parents from Nova Scotia rated all subscales significantly higher than parents from other regions. CP subtype and severity were not significantly associated with MPOC‐56 subscale scores. Higher socio‐economic status was associated with lower MPOC‐56 subscale scores. Higher paternal educational attainment and household income were significantly associated with lower scores on the Providing General Information and Providing Specific Information about the Child subscales respectively. Interpretation Participants affirmed the provision of family‐centred services from Canadian pediatric rehabilitation centres. Sociodemographic factors were associated with parental perceptions of family‐centred services. What this paper adds Sociodemographic factors were associated with parental perceptions of family‐centred care. Factors intrinsic to the child's cerebral palsy were not associated with parental perceptions.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Family‐centred health care for children with cerebral palsy

Shevell

Oskoui

Wood

et al. 2018

Develop Med Child Neuro

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“…Developing the necessary skills of families through their interaction with therapists is essential for helping them to support the development of their child with CP and achieve their desired health outcomes (Novak & Cusick, 2006). Enhancing caregiver competency to understand the correct use of the AFO will facilitate the implementation of its use, thus intensifying the benefits that this device provides (Oliveira, Ballarino, Monteiro, Pinto, & Pires, 2010; Terwiel et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

‘What if it were like this?’ Perception of mothers of children with cerebral palsy about the ankle‐foot orthosis of their children: A qualitative study

Lana

Maia

Horta

et al. 2020

Child

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Background: The family-centred approach is fundamental in the therapeutic process of children with cerebral palsy (CP), and the increased competence of parents about therapeutic devices, especially orthoses, can facilitate its implementation, thus intensifying the benefits that this device provides. The aim of this study was to understand the perception of mothers of children with CP in relation to their children's anklefoot orthosis.Methods: This is a qualitative study using thematic content analysis technique. Data were collected using semi-structured interviews from 24 mothers of children with Levels IV and V of CP according to the Gross Motor Function Classification System (GMFCS), who were attended at a philanthropic rehabilitation centre.Results: Three categories were identified from analyzing the interviews: benefits of the orthosis, the orthosis in the child's daily life and 'What if it were like this?' Conclusions: According to the mothers' perceptions, the ankle-foot orthosis improved their child's mobility. The orthoses are used in different contexts in the child's daily life, and the mothers pointed out suggestions regarding personalizing the orthosis with different colors and patterns, increasing comfort and facilitating the way in which the device is placed. K E Y W O R D S family, neurological disorder, orthotic devices 1 | INTRODUCTION Children with cerebral palsy (CP) have musculoskeletal impairments, which are often associated with comorbidities such as cognitive disorders, which directly interfere in acquiring essential motor skills to perform daily activities and participating in the environment in which

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“…Typically, parents expect professionals to treat the child during intervention: they expect that the therapist does the job of treating while they watch the treatment and receive instructions, advice, and information. 26 These expectations may be grounded in previous experience with interventions, or in ideas available on the Internet. 27 In addition, receiving clear instructions may be comfortable and effective for short-term outcomes.…”

Section: Challenges In the Implementation Of Coachingmentioning

confidence: 99%

Coaching approaches in early intervention and paediatric rehabilitation

Ziegler

Hadders‐Algra

2020

Develop Med Child Neuro

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Currently, coaching is increasingly applied to foster the involvement of families with an infant or young child with special needs in early intervention and paediatric rehabilitation. Coaching practices are included in many forms of intervention and are regarded as essential to reach beneficial outcomes for the child and family. There are, however, many ambiguities that blur the concept of coaching and hamper its understanding and integration as an evidence‐based approach in early intervention and paediatric rehabilitation: lack of differentiation between coaching and training of families, for example. Challenges to incorporate coaching into professional practice relate to adult learning processes and knowledge acquisition, and transformation of attitudes, beliefs, and treatment habits. In this paper, we review the barriers encountered and the possibilities available to promote successful implementation of coaching in early childhood interventions. What this paper adds Literature defines coaching ambiguously, which hampers its implementation in early intervention. The term ‘coaching’ should be reserved for relationship‐directed, family‐centred intervention.

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Family‐centred service: differences in what parents of children with cerebral palsy rate important

Abstract: Parents rate the importance of family-centred services for their situation in various ways. These findings endorse that family-centred services should recognize the uniqueness of families and should be tailored to what parents find important.

Cited by 23 publications

References 19 publications

Family‐centred health care for children with cerebral palsy

Family‐centred health care for children with cerebral palsy

‘What if it were like this?’ Perception of mothers of children with cerebral palsy about the ankle‐foot orthosis of their children: A qualitative study

Coaching approaches in early intervention and paediatric rehabilitation

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