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

Abstract

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...

Increasing the Use of Group Interventions in a Pediatric Rehabilitation Program: Perceptions of Administrators, Therapists, and Parents

“…Finally, reported group outcomes are similar to those presented in the literature: groups increase feelings of support and well-being, decrease families' feelings of isolation and provide opportunities for children to develop and practice various skills (Eliasson, et al, 2009; Graham & Avent, 2004; Kayihan, 2001; Hendriks, De Moor, Oud & Savelberg, 2000; LaForme Fiss & Effgen, 2007; LaForme Fiss et al, 2009;Odman, et al, 2009). Group benefits on self-esteem were also reported.…”

“…Groups may however create opportunities for new forms of therapeutic relationships within rehabilitation programs, such as the peer support provided among families. Given that a group's objectives may be more holistic and less discipline-specific, our results suggest that children's well-being and social participation Therapists doubts about service quality might be explained by the professional 'dilemma' coined by King et al (2006) and referring to a focus on discipline-and skill-specific developmental goals rather than those related to children's well-being and social participation.Finally, reported group outcomes are similar to those presented in the literature: groups increase feelings of support and well-being, decrease families' feelings of isolation and provide opportunities for children to develop and practice various skills (Eliasson, et al, 2009; Graham & Avent, 2004; Kayihan, 2001; Hendriks, De Moor, Oud & Savelberg, 2000; LaForme Fiss & Effgen, 2007; LaForme Fiss et al, 2009;Odman, et al, 2009). Group benefits on self-esteem were also reported.…”

Motor Training and Physical Activity Among Preschoolers with Cerebral Palsy: A Survey of Parents’ Experiences

“…In the systematic review, individual training, such as home training, showed more promising improvements than group training, found in the CE studies (67,70,(140)(141)(142). Ødman et al (143), who investigated the effects of CE and included children 3-16 years old, suggested that older children benefitted more from group training than younger children. Because the children in the RCT were six years old or younger, and half of them had GMFCS levels IV-V, this fact might indicate that some of the children were too young or were not sufficiently mature cognitively to benefit from the added effect of group training.…”

Needs of caregivers of children with cerebral palsy: A literature review

“…[4] Caregivers can increase their information by involvement in support groups. [20] They also need to trust the information provided through support groups. Information from support groups gives caregivers feelings of competence and well-being, which potentially meets their needs.…”

“…[16,17] In addition to formal knowledge, sharing experiences in support groups also enables caregivers to gain practical knowledge and skills for the day-to-day management of their CCP. [17,20] 3.2 Financial needs Support with financial needs is a recurring need expressed by caregivers. The majority of financial needs identified in the literature were related to the financial burden associated with the cost of equipment, treatments, therapies, insurance, and access to community services.…”