Family-centered caregiving and well-being of parents of children with disabilities:linking process with outcome

King, Gillian

doi:10.1093/jpepsy/24.1.41

Cited by 374 publications

(368 citation statements)

References 29 publications

Supporting

Mentioning

336

Contrasting

Unclassified

Order By: Relevance

“…Behaviour problems of the child have been found to be a source of stress (ill-being) for parents with disabled children [8,33]. The conception IGT as a temporary normalisation illustrates that a relatively short stay in an environment of peers and knowledgeable and understanding professionals may serve as a platform which bolsters against strains in everyday life.…”

Section: Results Discussionmentioning

confidence: 99%

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

Ödman

Richt

Öberg

2009

Disability and Rehabilitation

View full text Add to dashboard Cite

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...

show abstract

Section: Results Discussionmentioning

confidence: 99%

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

Ödman

Richt

Öberg

2009

Disability and Rehabilitation

View full text Add to dashboard Cite

show abstract

“…King et al 9 avaliaram diversos fatores relacionados ao bem-estar de 166 pais de crianças com alterações neurológicas diversas, inclusive PC, e encontraram que o nível de escolaridade dos pais, a incapacidade e problemas de comportamento da criança, a função familiar, a satisfação com o apoio social e as estratégias de enfrentamento de problemas estão relacionados com a percepção de bem-estar dos pais.…”

Section: Discussionunclassified

Relação entre desempenho funcional de crianças com paralisia cerebral e qualidade de vida relacionada à saúde de seus cuidadores

2008

View full text Add to dashboard Cite

show abstract

“…Pediatricians should provide family-centered care for children with CP and their families, because such care reduces stress and enhances parental well-being. 39 Children with CP and their families might also benefit from referrals to community resources including parent support and advocacy groups, respite programs, and community programs for recreational and adaptive sports. Input from community experts regarding home modifications to reduce architectural barriers (ramps, lifts, roll-in showers) is often indicated but financially challenging.…”

Section: Family Supportmentioning

confidence: 99%

Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy

Liptak¹,

Murphy²

2011

Pediatrics

View full text Add to dashboard Cite

All primary care providers will care for children with cerebral palsy in their practice. In addition to well-child and acute illness care, the role of the medical home in the management of these children includes diagnosis, planning for interventions, authorizing treatments, and follow-up. Optimizing health and well-being for children with cerebral palsy and their families entails family-centered care provided in the medical home; comanagement is the most common model. This report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health care needed by all children.

show abstract

Family-centered caregiving and well-being of parents of children with disabilities:linking process with outcome

Cited by 374 publications

References 29 publications

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

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

Relação entre desempenho funcional de crianças com paralisia cerebral e qualidade de vida relacionada à saúde de seus cuidadores

Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy

Contact Info

Product

Resources

About