Background and Objectives: The aim of this study was to identify the level of participation in the context of the developmental transition from adolescence to adult life for young adults with cerebral palsy (CP) and the factors that had an influence on participation. Materials and Methods: Eighty-one young adults (16–21 years old) with CP and with normal or slightly decreased cognitive function participated in this study. Assessments were made using the Rotterdam Transition Profile (RTP) and the WHO Disability Assessment Schedule 2.0 (WHODAS 2.0). In the binary regression model, levels of participation (RTP scores) were set as dependents and the level of disability (WHODAS 2.0 scores), age, and level of gross motor function were set as independent variables. Results: In the age group <18 years, in three out of seven RTP domains, less than 10% of participants were in phase 2 (experimenting and orientating toward the future), i.e., finance—7%, housing—7%, sexuality—4%. In the age group ≥18 years, 21% (education and employment), 56% (intimate relationships), and 59% (sexuality) of the participants were in phase 0 (no experience). Higher scores in WHODAS 2.0 domains showed positive associations with RTP domains, i.e., cognition with social activities, mobility with transportation, self-care with sexuality and transportation, and life activities with transportation. Age was positively associated with education and employment, finance, housing, and sexuality. Low motor function according to the Gross Motor Function Classification System (GMFCS) had negative associations with autonomy in social activities, sexuality, and transportation. Conclusions: Young adults with cerebral palsy showed low levels of autonomy in all domains of participation. When addressing a person’s improvement in terms of their participation, the promotion of abilities in cognition, mobility, self-care, and life activities should be attempted. Age and gross motor function influenced autonomy in participation, but not in all domains.
Abstract. Background: Effective assessment of outcomes in children with chronic health conditions is important to monitor their progress, evaluate interventions, and guide health policy. There is a limitation of the measures currently available for evaluating activities and participation in children with cerebral palsy according to Classification of Functioning, Disability and Health -Children & Youth Version (ICF-CY). The aim: On the ground of an available scientific literature, to identify and to analyze measures of activities and participation for paediatric patients with cerebral palsy. Materials and methods: A systematic search was performed in data basis EBSCO (Medline), Science Direct and Cochrane Library. On the ground of the previously conducted scientific research work publications, the identified evaluative measures were reviewed for their characteristics, psychometric properties of reliability and/or validity and analyzed for their utility. Their accordance to the activities and participation domains of the ICF-CY was identified and the practical use of the evaluative measures was proposed. Results and conclusion: 28 measures were identified; 15 were systematically reviewed and analyzed. Measures that assess only activities are found to be seven, only participation -two, and both activities and participation are assessed by six measures. When relating the measures to the domains of ICF-CY, the most appropriate for measuring activities is ASKp, participation -Life-H for Children, whereas for activities and participation -PEDI and COPM. The identified and analyzed measures reflect different activities and participation domains of ICF-CY; therefore, the choice and the practical use of the certain measure depend on the aim of the assessment.
Cerebral palsy is the most common cause of physical disability in children, most of them reaching and living adult life. For young people with cerebral palsy transition to adult life, concerning participation and healthcare, is a complex process and unsuccessful transition can result in decreased autonomy and problems of health. The aims of this research were: to detect the level of autonomy in participation and healthcare for young people with cerebral palsy with normal or possible cognitive deficit, to detect their level or readiness for transition to adult healthcare, to identify the factors that are associated and are impacting the transition process, to determine the significant differences in health and disability between young people with cerebral palsy and able-bodied peers. The literature review contains scientific grounds of limitations in participation and health risks for adults with cerebral palsy, describes the transition process to adult life, gives an insight in laws of Latvia concerning young adults with cerebral palsy in context of participation and healthcare, and mentions examples of education and work possibilities for persons with disability in Latvia. Methodology was built to give a comprehensive cross-sectional description of the transition process, to highlight the associated and impacting factors, which were interpreted as facilitating or inhibiting, and to compare functioning in life between young adults with cerebral palsy and the control group. The results of the research show that the largest proportion of participants are dependent on parents in such domains of participation as Education and employment, Finance, Housing and Transportation. Domain of participation – Leisure (social activities) – was found to be the only domain in which the largest proportion of the participants were autonomous, while in domains Intimate Relationships and Sexuality most of participants had no experience. In domains of healthcare – Care demands and Rehabilitation services – the largest proportion of the young people were in phase of experimentation and orientation with the future, resp., parents and young people formulate demands together, and no consultations are happening in paediatric or adult rehabilitation. Regarding domain Services and aids majority were still dependent on parents. Compared to control group, young adults with cerebral palsy had significantly higher difficulties in social participation and in the total level of difficulties concerning functioning and disability. In addition, young adults with cerebral palsy significantly more often face difficulties managing tasks and activities of functioning than the young adults of the control group. Most frequent and strongest correlations with domains of autonomy in participation and healthcare were found to be the level of difficulties in self-care and cognitive functions. Self-care more frequently has significant an impact on domains of participation, cognitive functions – on healthcare. Other impacting factors on certain domains of autonomy in participation and healthcare were found to be the level of difficulties in mobility and life activities, age of the participant, gross motor functions, manual abilities, and the need of an assistant. The level of readiness for transition to adult healthcare for young adults with cerebral palsy was detected to be between the phases of preparation and action. The results of the research show that significant impact on the level of readiness for transition to adult healthcare have the gross motor functions, cognitive functions, need of an assistant, the level of autonomy in the Leisure (social activities) and Transportation domains, and the level of difficulties in self-care, however, the strongest were determined to be the level of cognitive functions and abilities of self-care.
Cerebrālā trieka ir visbiežāk sastopamais fiziskās nespējas iemesls bērniem, lielākajai daļai piedzīvojot arī pieaugušo vecumposmu. Jauniešiem ar cerebrālo trieku pārejas process uz pieaugušo dzīvi, skarot dalības un veselības aprūpes aspektus, ir sarežģīts posms, kas neveiksmīgas norises rezultātā rada samazinātas autonomijas un veselības riskus. Pētījuma mērķi bija noskaidrot autonomijas pakāpi pārejas vecuma jauniešiem bez vai ar iespējamiem kognitīviem traucējumiem dalībā un veselības aprūpē, gatavību pārejai uz pieaugušo veselības aprūpi, identificēt ar pārejas procesu saistītos un ietekmējošos faktorus, kā arī noskaidrot, cik nozīmīgas ir atšķirības veselības un nespējas līmenī jauniešiem ar cerebrālo trieku un tāda paša vecuma kontroles grupai. Pētījuma literatūras apskats ietver zinātnisko bāzi par dalības ierobežojumiem un veselības problēmu riskiem cerebrālās triekas pieaugušo populācijā, raksturo pārejas procesu uz pieaugušo dzīvi, dod ieskatu Latvijas valsts tiesību aktos, kas attiecināmi uz jauniešiem ar cerebrālo trieku gan dalības, gan veselības aprūpes kontekstā, un min piemērus izglītības un nodarbinātības iespējām Latvijā personām ar invaliditāti. Metodoloģija izveidota, lai sniegtu pārejas procesa aktuālās situācijas aprakstu un lai izvirzītu ar procesu saistītos un to ietekmējošos faktorus, kas tiek interpretēti kā veicinoši vai kavējoši, kā arī lai salīdzinātu ar dzīves sfēru aprakstošo funkcionēšanu jauniešiem ar cerebrālo trieku un kontroles grupai. Pētījuma rezultāti norāda, ka lielākais īpatsvars pētījumā iesaistīto pārejas vecuma jauniešu ar cerebrālo trieku ir atkarīgi no vecākiem dalības domēnos “Izglītība un nodarbinātība”, “Finanses”, “Mājsaimniecība” un “Transports”. Dalības domēns “Atpūtas un sociālās aktivitātes” ir vienīgais, kurā lielākais īpatsvars jauniešu ar cerebrālo trieku ir sasnieguši pilnīgu autonomiju, savukārt dalības domēnos “Intīmās attiecības” un “Seksualitāte” lielākajai daļai jauniešu ar cerebrālo trieku nav pieredzes. Veselības aprūpes domēnos “Aprūpes prasības” un “Rehabilitācijas pakalpojumi” lielākais īpatsvars jauniešu ar cerebrālo trieku atrodas otrajā autonomijas fāzē, proti, aprūpes prasības tiek formulētas kopā ar vecākiem, bet konsultācijas netiek saņemtas ne pediatrijas, ne pieaugušo rehabilitācijā, savukārt domēnā “Pakalpojumi un palīdzība” lielākā daļa jauniešu joprojām ir pilnībā atkarīgi no vecākiem. Salīdzinot ar kontroles grupas jauniešiem, cerebrālās triekas jauniešu grūtību līmenis sabiedrisko dalību raksturojošos jautājumos lielākoties ir nozīmīgi augstāks, bet kopējais jauniešu ar cerebrālo trieku funkcionēšanu un nespēju raksturojošais grūtību līmenis ir nozīmīgi augstāks nekā kontroles grupas jauniešiem, turklāt jaunieši ar cerebrālo trieku, veicot dažādus uzdevumus un darbības, daudz biežāk saskaras ar grūtībām. Visbiežākās un spēcīgākās saistības ar kādu no autonomiju dalībā un veselības aprūpē raksturojošiem domēniem konstatē grūtību līmenim pašaprūpē un kognitīvajās funkcijās. Pašaprūpes spējas biežāk ietekmē dalības domēnus, bet kognitīvās funkcijas – veselības aprūpes. Kā nozīmīgs dalību un veselības aprūpes autonomiju atsevišķos domēnos ietekmējošs faktors tika konstatēts arī grūtību līmenis mobilitātē un ikdienas rutīnas aktivitātēs; jaunieša vecums; lielās motorās funkcijas; manuālās prasmes un asistenta nepieciešamības pakāpe. Pārejas gatavībā uz pieaugušo veselības aprūpi pētījumā iesaistīto jauniešu ar cerebrālo trieku vidējais rādītājs atrodas starp sagatavošanās un rīcības fāzi. Pētījuma rezultāti liecina, ka nozīmīgi ietekmējošie faktori jauniešu ar cerebrālo trieku pārejas gatavībai uz pieaugušo veselības aprūpi ir lielo motoro funkciju līmenis, kognitīvās funkcijas, asistenta nepieciešamības pakāpe, autonomijas pakāpe domēnos “Atpūtas un sociālās aktivitātes” un “Transports”, kā arī grūtību līmenis pašaprūpes darbībās, nozīmīgākajiem esot kognitīvo funkciju līmenim un pašaprūpes spējām.
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