Building independence in self-care and household tasks: a qualitative study with adolescents with cerebral palsy and their caregivers.

PURPOSE: Adolescents with cerebral palsy (CP) may experience limitations in self-care and household tasks. The aim of the study was to understand the process of building independence in self-care and household tasks from the perspective of adolescents and their caregivers. MATERIALS AND METHODS: We conducted a qualitative study with a phenomenological approach with 10 adolescents (15-17 years old) and 11 caregivers from a transition service in Brazil. Semistructured, remote interviews were conducted with each participant. The interviews were recorded for transcription and content analysis. RESULTS: Two thematic categories emerged: (1) "Thinking about independence" and (2) "Possible ways to foster independence." The first category was divided into three subcategories: "Expectations and the desire to be independent," "Obstacles to independence," "Concerns about the future." The second category was divided into four subcategories: "People and places," "Opportunities for practice," "Personal attitude" and "Adaptations that facilitate." CONCLUSION: Adolescents' independence in several everyday activities involves physical, socioemotional and environmental aspects. Enabling opportunities for practice, an adapted environment, support from rehabilitation services and developing collaborative relationships with caregivers are elements that may favor the independence of adolescents with CP.

The relationship between adolescents and their caregivers is important in building independence.Interventions centered on educational practices for caregivers of adolescents with cerebral palsy should be encouraged.Environmental facilitators include support from families, friends and therapists.Collaborations among therapists, caregivers and adolescents may promote autonomy.

"Listen to us!" A qualitative study of adolescents with disabilities to help plan a transition service.

BACKGROUND: The development and implementation of transition services for adolescents with disabilities should incorporate perceptions of their needs and interests. The aim of the study was to understand the concerns of adolescents with physical disabilities during adolescence and their expectations regarding adulthood to help plan a transition programme in Brazil. METHODS: This is a qualitative study, using a phenomenological approach. Eight adolescents with physical disabilities (seven with cerebral palsy, one with muscular dystrophy), aged between 15 and 17 years, participated in two focus groups. Prior to the conduction of the groups, clinicians selected topics related to adolescence and the transition to adulthood, based on their professional experience and available literature. During the focus groups, illustrative images of each topic were presented to the participants. Each adolescent was asked to select five topics that he/she considered important to be discussed in a future transition programme. The participants justified their individual choices and, in groups, reached a consensus on the groups' priorities. This strategy was chosen to motivate the discussion among the participants and to explore their concerns regarding adolescence and transition to adulthood. The focus groups were audio recorded and transcribed for content analysis. RESULTS: Three themes emerged from the content analysis: (1) "Adolescents and their social relationships," (2) "Identity formation: self-awareness and development of autonomy," and (3) "What about adulthood?" CONCLUSION: The themes revealed conflicts between the adolescents' desire to achieve independence and autonomy and the awareness of their limitations. The interpretation of the results helped structuring the actions of the Adolescence in Focus Programme, with two main actions: promotion of the adolescent's functional performance in daily living activities and assistance with their identity formation and preparation for adulthood.

"Help Me to Improve my Own Priorities!": A Feasibility Study of an Individualized Intensive Goal Training for Adolescents with Cerebral Palsy.

AIM: To investigate the feasibility and the preliminary effects of an individualized intensive goal training for adolescents with cerebral palsy (CP). METHODS: Twelve adolescents with CP (12-17 years old, MACS II-III, GMFCS I-IV) identified functional goals to be practiced three hours/day, five days/week, for two weeks. The feasibility aspects included the participant's adherence (i.e., daily logs), the adequacy of the instruments used, and the participant's satisfaction with the intervention (i.e., structured questionnaire). Outcome measures included the Canadian Occupational Performance Measure (COPM), Pediatric Evaluation of Disability Inventory (PEDI) (self-care; mobility), Children Helping Out: Responsibilities, Expectations and Supports (CHORES), Participation and Environment Measure-Children and Youth (PEM-CY) (home) and Box and Blocks Test (BBT). Assessments were conducted one month and two days before the intervention, immediately and three months after the intervention. Friedman tests were used to test time-related differences in the outcome measures. RESULTS: All adolescents completed and reported satisfaction with the proposed intervention. Significant improvements were observed in performance and satisfaction (COPM), in functional skills and caregiver assistance in self-care and in the performance of household tasks. There were no significant differences in mobility skills, independence in mobility or household tasks, home participation, or manual dexterity. CONCLUSION: The intensive training was feasible and promoted improvements in functional goals and daily functioning of adolescents with CP.

Hand-arm bimanual intensive therapy and daily functioning of children with bilateral cerebral palsy: a randomized controlled trial.

AIM: To examine the efficacy of Hand-Arm Bimanual Intensive Therapy (HABIT) on daily functioning, unimanual dexterity, and bimanual performance of children with bilateral cerebral palsy (CP) compared with customary care. METHOD: Forty-one children with bilateral CP, aged 4 to 16 years, classified in levels I to III of the Manual Ability Classification System, were randomly assigned to HABIT (90h) (n=21) or to customary care (4.5h) (n=20). Participants' daily functioning (Pediatric Evaluation of Disability Inventory [PEDI], Canadian Occupational Performance Measure [COPM]), unimanual dexterity (Jebsen-Taylor Test of Hand Function, Box and Blocks Test [BBT]), and bimanual performance (Both Hands Assessment) were assessed pre-, post-, and 6 months after the intervention. Linear mixed-effects models were used for inferential analysis. RESULTS: Children participating in HABIT showed greater improvements in daily functioning (COPMperformance : χ 1 2 =9.50, p<0.01; COPMsatisfaction : χ 1 2 =5.07, p<0.05; PEDIfunctional skills : χ 1 2 =6.81, p<0.01; PEDIcaregiver assistance : χ 1 2 =6.23, p<0.05) and in the dexterity of the dominant hand (BBT: χ 1 2 =3.99, p<0.05) compared with children maintaining customary care. Group or time effects did not explain any variance in bimanual performance or in the dexterity of the non-dominant hand. INTERPRETATION: HABIT may be beneficial for children with bilateral CP, with benefits evidenced for daily functioning outcomes. WHAT THIS PAPER ADDS: Hand-Arm Bimanual Intensive Therapy (HABIT) improved daily functioning of children with bilateral cerebral palsy (CP). Bimanual performance, measured by the Both Hands Assessment, did not change after HABIT in children with bilateral CP. Children with asymmetric and symmetric hand use exhibited similar improvements after HABIT.