Parent participation in paediatric rehabilitation treatment centres in the Netherlands: a parents’ viewpoint

Siebes, R. C.; Wijnroks, Lex; Ketelaar, Marjolijn; Schie, Petra E. M. van; Gorter, Jan Willem; Vermeer, A.

doi:10.1111/j.1365-2214.2006.00636.x

Cited by 47 publications

(52 citation statements)

References 24 publications

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“…Since parent participation is part of the family centred approach and since knowledgeable parents are important for successful involvement in caregiving [2,29], it is unlikely that anyone would deny that transference of knowledge and a sense of actual involvement among parents are central goals for the enterprise. Increased parent involvement has also been suggested to improve prerequisites for a better fit between practical difficulties in ordinary life, services delivered, family strengths, and family limitations [30]. Since good knowledge is insufficient unless parents also trust their own agency, development of feelings of competence among parents is another almost self-evident goal [5,9] and so is actually enhancement of different aspects of parents' well-being [8].…”

Section: Results Discussionmentioning

confidence: 99%

“…Some parents perceive every day as a big exercise [30] and decreased caregiver demands have been shown to be associated with increased physical and phychological well-being [8]. Caution has therefore to be taken not to press unneccessary, unrealistic and at worst even destructive demands on parents who already have a very high caregiver burden compared to parents with non-disabled children.…”

Section: Results Discussionmentioning

confidence: 99%

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

Ödman

Richt

Öberg

2009

Disability and Rehabilitation

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Purpose:The aim was to explore what wants and needs intensive group training (IGT) fulfil for parents to children with CP and what problems that may arise due to participation. Methods:A phenomenograpical approach was used. Semi-structured interviews were conducted to elicit information about what participation means to parents. Results: Five overarching categories expressing positive functions of IGT were identified: IGT as knowledge promotion, as a complementary training resource, as a bracket to ordinary life, as a means to promote relations with therapists, and as a leisure-activity. One category: IGT as risk for ill-being expresses perceived problems. Each category is in turn divided into a number of subconceptions -13 conceptions of this kind were identified. Conclusions: The conceptions express positive and negative functions of IGT as perceived by parents. These functions in turn can be considered as reflections of basic wants and needs. The results demonstrate that IGT have a potential to contribute to feelings of enhanced care competence among parents, of being supported and of increased strength and vitality. All parents didn't have needs of participation in IGT for themselves. There is also a risk that IGT is experienced as an additional burden and may have negative effects on family-functioning.Key words: Cerebral Palsy, Therapeutics, Qualitative research, Conductive Education, Intensive group trainingIn family-centered child and youth habilitation it is believed that the functioning of the child is enhanced in a supportive family and in an ordinary life context [1,2]. Different functional therapy approaches, based on theories of motor control and learning, have evolved within this framework. These approaches do not rule out training in segregated settings adapted for training acitivities, but commonly advocate that habilitation should take place in the ordinary enviroment of the child [3][4][5]. Goals should be set in collaboration with the child and family and accomplishment of tasks should be reached by identifying resources and changing constraints in the child, task, or the environment [5][6][7].Within the Swedish child and youth habilitation intensive group training (IGT) is offered to children with Cerebral Palsy (CP) and their parents. IGT is pursued in segregated contexts and is considered to be a complement to interventions done in the ordinary life environment. Such training is also offered by private caregivers working with conductive education (CE).Typically, IGT help children exercise functional skills or prerequisites for functional skills over a 3-4 week period, with reiteration of movements and activities day after day. The groups are organized according to the child's level of function and age. Participation of parents, close relatives, and/or assistants is desirable or required and is seen as a means to improve their skills in supporting the child in ordinary life. An important target with interventions is to enhance parents' well-being [8] and feelings of competence in supporting...

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Section: Results Discussionmentioning

confidence: 99%

Section: Results Discussionmentioning

confidence: 99%

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

Ödman

Richt

Öberg

2009

Disability and Rehabilitation

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“…The rehabilitation services at Chitungwiza are offered under one roof therefore the caregivers may have found it difficult to differentiate between the different types of services. However providing all the rehabilitation services under one roof fosters a holistic approach to treatment .This is supported by Siebes and colleagues 8 who reported that a holistic approach is important in the management of children with disabilities. The importance attached to having holistic and consistent rehabilitation for children with disabilities that was noted by the caregivers in this study has also been previously echoed in other populations 13 .…”

Section: Discussionmentioning

confidence: 96%

“…This can only be achieved if the child attends scheduled rehabilitation therapy sessions in addition to also meeting the needs and expectations of primary caregivers 7 ; a feat that is equally challenging in resource constrained settings such as Zimbabwe. Rehabilitation of children with disabilities is a process that requires time to produce results, and better treatment outcomes are achieved when early identification and interventions are holistically instituted 8 . It is therefore crucial to incorporate primary caregivers in the overall management of the patient.…”

Section: Introductionmentioning

confidence: 99%

Factors contributing to defaulting scheduled therapy sessions by caregivers of children with congenital disabilities

Nota¹,

Chikwanha²,

January³

et al. 2015

Mal. Med. J

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Background Defaulting scheduled rehabilitation therapy may result in increased adverse outcomes such as permanent disability and increased healthcare costs. Concomitantly, there is evidence to suggest that early and continued rehabilitation of children with congenital disabilities can improve outcomes significantly. This study was conducted to determine factors contributing to caregivers' defaulting scheduled rehabilitation therapy sessions. Methods A descriptive cross sectional study was carried out at Chitungwiza Central Hospital, a tertiary facility offering in and outpatient rehabilitation services in Zimbabwe. Caregivers of children who had congenital disabilities (N=40) and who had a history of defaulting treatment but were available during the data collection period responded to an interviewer administered questionnaire. Data were analysed for means and frequencies using STATA 13. ResultsFactors that contributed to caregivers defaulting scheduled therapy included economic constraints (52%), child related factors (43%), caregiver related factors (42%), service centred factors (30%) and psychosocial factors(58%). Majority of the caregivers (98%) were motivated to attend therapy by observable improvements in their children. Other motivators were incentives given in the rehabilitation department (45%), availability of rehabilitation personnel to provide the required services (48%) and psychosocial support from fellow caregivers, families and the rehabilitation staff (68%). Although all the caregivers could not distinguish occupational therapy from physiotherapy services they all reported that therapy was important. Conclusions A combination of psychosocial, economic, child centred and service centred factors contributed to caregivers defaulting scheduled therapy. Interventions that may potentially improve caregiver attendance to scheduled therapy include community outreach services, efficient rehabilitation service provision at the hospitals, and facilitation of income generating programmes for caregivers.

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“…Particularly for young children, parents are the natural source of instruction in language and socialization and parental involvement in treatment is considered essential to successful intervention programmes for children with ASD. Therefore, rehabilitation programmes should be developed through a collaborative approach between parents and professionals [2,[22][23][24]. Subsequently, it seems critical for professionals to identify the rehabilitation priorities that parents have for their children with ASD [22][23][24].…”

Section: Rehabilitation Issues In Autism Spectrum Disordersmentioning

confidence: 99%