Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 32
Filtrar
1.
Int J Dev Disabil ; 70(5): 857-864, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39131759

RESUMO

Parents have long been concerned with the transition to adulthood of their children with intellectual and developmental disability (IDD) particularly with financial issues. The purpose of this study was to explore the financial concerns of mothers of adults with IDD. Five mothers of adults with IDD participated in a focus group to share their experiences, opinions, concerns, and challenges related to finances. Five themes emerged from the qualitative data analysis: (a) job-related difficulties, (b) living expenses, (c) access to essential services, (d), skills deficits and/or challenging behavior, and (e) long-term care. Mothers in general indicated tremendous financial burdens, loss of income, and expressed concerns about long-term care of their children with IDD. These themes are discussed and implications for practice and research are provided.

2.
Artigo em Inglês | MEDLINE | ID: mdl-39134393

RESUMO

BACKGROUND: Self-determination refers to setting goals and making decisions regarding one's own life with support from others as needed. Research on people with intellectual and developmental disabilities has established the importance of self-determination for quality of life outcomes, such as increased independence and life satisfaction. However, self-determination has not been characterised specifically in fragile X syndrome (FXS), the leading inherited cause of intellectual disability. Relative to youth with other forms of intellectual and developmental disabilities, youth with FXS may face exceptional barriers to the development of self-determined behaviour. In addition to intellectual disability, the FXS behavioural profile is characterised by high rates of autism and anxiety that may further limit opportunities for youth with FXS. The heritable nature of the condition can also yield a distinctive family environment, with siblings and parents also living with fragile X or its associated conditions. Considering these unique challenges, the present study examined self-determination in young adult males and females with FXS and explored whether factors such as language skills, adaptive behaviour and autism traits were associated with self-determination capacity and opportunities. METHODS: The present study included 9 females and 36 males with FXS between the ages of 17 and 25 years. Caregivers (mothers or fathers) completed the American Institute for Research Self-Determination Assessment, which is a questionnaire that yields three scores: self-determination capacity, opportunities for self-determination at home and opportunities for self-determination at school. RESULTS: Caregivers endorsed a wide range of self-determination capacity and opportunities, with ratings for opportunities at home and school exceeding ratings of capacity. Better adaptive behaviour skills were associated with more self-determination capacity, and the presence of more autism traits was associated with fewer opportunities at school. CONCLUSIONS: Results from this study contribute to our understanding of avenues to best support young adults with FXS as they transition to adulthood. Our findings also have implications for practice, such that interventions targeting adaptive behaviours and self-determination may be an effective approach for promoting autonomy and independence for young adults with FXS. Additionally, caregivers and educators should continue to provide opportunities to practise self-determination, regardless of their perception of capacity.

3.
Int J Dev Disabil ; 70(4): 719-729, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38983498

RESUMO

Definitions of adulthood for people with intellectual disability are often complicated, with milestones being markedly different for this population. This is then associated with difficulties for both the people with intellectual disability and their parents, who are closely involved in this transitional period. This paper aims to report on parents' perception and experience of adulthood for their son or daughter with an Intellectual Disability (ID). Qualitative data were collected through 30 - 60-minute phone interviews with eight parents of a person with an intellectual disability aged 15 or older (mean parent age = 60; mean child age = 23). Thematic analysis found that Perception of Adulthood encompassed themes of Independence and Normality. Experiences of Adulthood were categorised under Government Services, Responsibility and Social Supports. Findings of this research provide information for the growing literature around adulthood for people with intellectual disability, as well as how to amend policies and procedures for services that cater to people with intellectual disability and their parents during this transition.

4.
J Adolesc Health ; 2024 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-39007790

RESUMO

PURPOSE: To characterize the primary ethical issue and contextual features of ethics consultation for patients aged 18-26 years based on setting (adult vs. pediatric). METHODS: A retrospective review of 965 ethics consultation notes to identify patients aged 18-26 years cared for in the pediatric or adult setting between January 1, 2016-December 31, 2020. We collected demographic information and used conceptual content analysis to identify the primary ethical issue and contextual features for each consult and analyzed these using descriptive statistics. RESULTS: We identified 46 consults (30 adult and 16 pediatric) for 40 unique patients (28 adult and 12 pediatric). The median age was 19 years in the pediatric setting and 24 in the adult setting. Fifty-three percent were female, 95% non-Hispanic, 68% White, and 76% were inpatient. The primary ethical issue in the adult setting was Refusal of Recommended Treatment (20%), while the dominant contextual issue was Communication Disputes/Conflicts Between the Staff and Patient (23%). The primary ethical issue for the pediatric setting was Goals of Care (31%) and the dominant contextual feature was concerns for Quality of Life (31%). DISCUSSION: The primary ethical issues and related contextual features this population experiences differ based on setting. Improved understanding of adolescent and young adult development, especially related to values formation, decision-making, and communication skills training may ameliorate some of these challenges. Referral patterns for this age group overall and particularly for patients on the ends of the spectrum and inpatients raise concerns for ethics consultation use. Further education about ethics services is recommended.

5.
Res Hum Dev ; 21(1): 26-49, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39036538

RESUMO

Using data from Monitoring the FutureStudy that include 31 cohorts of high school seniors (1976 to 2006) who were followed from ages 19-30, weidentified heterogeneity in union formation trajectories andits covariates (cohort, sex, race/ethnicity, and parental education). We identified nine trajectorieswith approximately 40% following a single to married sequence (with variation in the timing of the sequence), about 35% remaining single, and the remaining respondents showing considerable heterogeneity.Recent cohortswere more likely to remain single and experience more transitions, women made earlier transitions, and Blackrespondents were less likely to follow pathways entailing marriage.

6.
Pediatr Cardiol ; 2024 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-39060487

RESUMO

Adolescents with complex congenital heart disease (CHD) are at risk of experiencing complications later in life. The purpose of this study was to develop an online health management program for adolescents with complex CHD and to evaluate its effects on self-efficacy, health behavior, and health-related quality of life. A randomized controlled trial design was used. A total of 29 adolescents with complex CHD were divided into an experimental group of 15 and a control group of 14. Participants in the intervention group took part in the 4-week online health management program (weekly online group sessions, 1:1 phone coaching, dietary diary feedback, and provision of health information) developed based on self-efficacy theory, while those in the control group received standard medical follow-up. Data were collected from August 2021 to March 2022 using a questionnaire-including the Korean Self-Rated Abilities for Health Practices: Health Self-Efficacy Measure (K-SRAHP) and Pediatric Cardiac Quality of Life Inventory (PCQLI)-and an ActiGraph accelerometer to track physical activity and sleep. The intervention group showed significant improvements in health self-efficacy (p = 0.003), psychosocial impact (p = 0.013), daily step counts (p = 0.011), and moderate to vigorous-intensity physical activity (p = 0.027). Additionally, a decrease in weekend leisure time sedentary behavior (p = 0.035) was observed. However, there were no significant differences in sleep behavior between two groups. The online health management program significantly enhanced self-efficacy, health behavior, and psychosocial impact in adolescents with complex CHD. These findings will inform the development of policies for transitional medical care tailored to adolescents with complex CHD.

7.
Braz J Phys Ther ; 28(3): 101080, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38848627

RESUMO

BACKGROUND: Autonomy in participation of young adults with cerebral palsy (CP) is not well understood due to the lack of appropriate instruments, especially for the Brazilian population. The Rotterdam Transition Profile (RTP) categorizes autonomy in Participation (education, employment, finances, housing, leisure, intimate relationships, sexuality, transportation) and Health Services (care demands, services and aids, and rehabilitation services) domains. OBJECTIVES: To cross-culturally adapt the RTP for use in Brazil, and to describe the levels of autonomy in participation and associated factors of Brazilian youth with CP. METHODS: RTP was translated and content validity was investigated through an expert panel (n = 4 researchers and n = 4 clinicians); 30 adolescents and young adults with CP provided data for construct validity and internal consistency analysis. To analyze influencing factors, 56 youth with CP, mean age 25 years (SD = 6.9 years), with good cognitive level remotely responded to the RTP, sociodemographic information, and functional classifications (gross motor, manual ability). RESULTS: Following translation, content and construct validity were established, with changes made to improve the clarity of items. Cronbach's alpha (0.82) was considered good and test-reliability was fair to good for most items. High levels of autonomy were found in the areas of Leisure and Rehabilitation, with the lowest proportion of participants with autonomy in Housing, Intimate Relationships, and Finances. Autonomy in participation was associated with age, gross motor and manual ability classifications, and with context-related factors. CONCLUSION: The Brazilian Portuguese version of the RTP was considered valid and reliable. Findings will support transition planning for young people with CP.


Assuntos
Paralisia Cerebral , Humanos , Paralisia Cerebral/fisiopatologia , Brasil , Comparação Transcultural , Adolescente , Autonomia Pessoal , Reprodutibilidade dos Testes , Inquéritos e Questionários
8.
Adv Life Course Res ; 60: 100614, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38749369

RESUMO

Despite changes in women's status in recent decades in Arab-Palestinian society in Israel, marriage and motherhood still play a central role. Moreover, although the increase in the integration rates of young Arab-Palestinian women into the higher education system, as girls belonging to a minority group with traditional structures, they are expected to prioritize family and community expectations over personal aspirations. This study focuses on art projects of female Arab-Palestinian college students in Israel, which serve as a prism for detecting cultural perceptions of pathways to entering adulthood among this population today. These topics are central themes in the projects in question. Working on these projects forced the students to profoundly contemplate their life stage - being engaged or newly married and young mothers. The aim of the study was to decode the artworks in order to explore the students' feelings and thoughts on a topic rarely considered through the eyes of the young women themselves. The study provides a nuanced examination of the social processes that young educated Arab-Palestinian women experience in the current family structure. By analysing the projects using visual tools from semiotics and art history, along with verbal texts provided by the students, we assert that these projects serve as a crucial avenue for students' self-expression regarding topics seldom addressed. Even though the projects cannot be understood as critical of traditional gender expectations, we did find some interesting voices of unease regarding them. The move from their parents' home to their new one is widely described as difficult, where sadness and concern about the future are highly noticeable. In addition to accepting the stages of marriage and motherhood with joy and excitement, they also express fear and hesitation. This tension between fulfilling their expected roles and being unsure and hesitant about them exists in the projects. We claim that even if implicit and careful, these signs are important to recognize. However, it seems that higher education has failed to significantly undermine patriarchal and gender expectations.


Assuntos
Árabes , Casamento , Mães , Estudantes , Humanos , Feminino , Árabes/psicologia , Israel , Casamento/psicologia , Estudantes/psicologia , Mães/psicologia , Adulto Jovem , Adulto , Universidades , Adolescente
9.
J Health Soc Behav ; : 221465241247538, 2024 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-38682636

RESUMO

At a time when educational attainment in young adulthood forecasts long-term trajectories of economic mobility, better health, and stable partnership, there is more pressure on mothers to provide labor and support to advance their children's interests in the K-12 system. As a result, poor health among mothers when children are growing up may interfere with how far they progress educationally. Applying life course theory to the National Longitudinal Study of Adolescent to Adult Health to investigate this possibility, we found that young adults were less likely to graduate from college when raised by mothers in poor health, especially when those mothers had a college degree themselves. Young people's school-related behaviors mediated this longitudinal association. These findings extend the literature on the connection between education and health into an intergenerational process, speaking to a pressing public health issue-rising morbidity among adults in midlife-and the reproduction of inequality within families.

10.
Eur J Neurol ; 31(6): e16267, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38556893

RESUMO

BACKGROUND AND PURPOSE: The transition to adult services, and subsequent glucocorticoid management, is critical in adults with Duchenne muscular dystrophy. This study aims (1) to describe treatment, functional abilities, respiratory and cardiac status during transition to adulthood and adult stages; and (2) to explore the association between glucocorticoid treatment after loss of ambulation (LOA) and late-stage clinical outcomes. METHODS: This was a retrospective single-centre study on individuals with Duchenne muscular dystrophy (≥16 years old) between 1986 and 2022. Logistic regression, Cox proportional hazards models and survival analyses were conducted utilizing data from clinical records. RESULTS: In all, 112 individuals were included. Mean age was 23.4 ± 5.2 years and mean follow-up was 18.5 ± 5.5 years. At last assessment, 47.2% were on glucocorticoids; the mean dose of prednisone was 0.38 ± 0.13 mg/kg/day and of deflazacort 0.43 ± 0.16 mg/kg/day. At age 16 years, motor function limitations included using a manual wheelchair (89.7%), standing (87.9%), transferring from a wheelchair (86.2%) and turning in bed (53.4%); 77.5% had a peak cough flow <270 L/min, 53.3% a forced vital capacity percentage of predicted <50% and 40.3% a left ventricular ejection fraction <50%. Glucocorticoids after LOA reduced the risk and delayed the time to difficulties balancing in the wheelchair, loss of hand to mouth function, forced vital capacity percentage of predicted <30% and forced vital capacity <1 L and were associated with lower frequency of left ventricular ejection fraction <50%, without differences between prednisone and deflazacort. Glucocorticoid dose did not differ by functional, respiratory or cardiac status. CONCLUSION: Glucocorticoids after LOA preserve late-stage functional abilities, respiratory and cardiac function. It is suggested using functional abilities, respiratory and cardiac status at transition stages for adult services planning.


Assuntos
Glucocorticoides , Distrofia Muscular de Duchenne , Humanos , Distrofia Muscular de Duchenne/tratamento farmacológico , Distrofia Muscular de Duchenne/fisiopatologia , Masculino , Adulto , Glucocorticoides/uso terapêutico , Adulto Jovem , Estudos Retrospectivos , Adolescente , Feminino , Pregnenodionas/uso terapêutico , Prednisona/uso terapêutico , Limitação da Mobilidade , Estudos de Coortes , Coração/efeitos dos fármacos , Coração/fisiopatologia
11.
J Appl Res Intellect Disabil ; 37(3): e13224, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38504527

RESUMO

BACKGROUND: The benefits of friendships among peers with and without intellectual and developmental disabilities are well supported by research. However, little is known about the nature of these inclusive friendships in inclusive college courses. METHOD: We explored the perspectives of peers on the development of authentic friendships among peers with and without intellectual and developmental disabilities in inclusive college courses in the United States. We used a sequential, explanatory, transformative mixed methods-grounded theory research design. We integrated quantitative (N = 44) and qualitative (N = 8) findings using blended analysis to inform a preliminary grounded theory of inclusive and reciprocal friendships. RESULTS: Quantitative findings suggest two relationships and one predictor of peers' perceived social engagement. Qualitative findings resulted in five themes that promote friendships. CONCLUSIONS: We propose that the context for developing inclusive friendships could be fostered using the preparation and actions stages of the grounded theory model.


Assuntos
Amigos , Deficiência Intelectual , Criança , Humanos , Deficiências do Desenvolvimento , Grupo Associado , Participação Social
12.
Autism Adulthood ; 6(1): 86-94, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-38435323

RESUMO

Introduction: Autistic individuals who independently travel-or commute without companionship or supervision-report feeling more connected to social, education, and employment opportunities. Despite the potential for independent transportation to improve quality of life, little is known about what transportation-related resources, specifically driving focused ones, exist for autistic individuals or how they and their families find and use them. The objectives of this study were to characterize: (1) where and how families in the United States find driving-related resources for their autistic adolescents; (2) families' perceived availability and utility of identified resources; and (3) resources families believe should be developed. Methods: We conducted semi-structured interviews with 33 caregivers of autistic adolescents aged 16-24 years without an intellectual disability. We used a directed-content approach to develop and implement codes; three trained coders analyzed all transcripts (inter-rater reliability ≥0.8 for all codes). Members of the research team reviewed coded data and created code summaries, which were then developed and discussed by the larger research team to determine final consensus. Results: Caregivers described a few existing resources that were helpful in guiding driving-related decisions. In addition, caregivers voiced that there were limited resources tailored to the unique needs that arise while teaching or learning how to drive, particularly ones that support their own and their adolescent's mental health. The limited resources and services identified as helpful-specifically support groups/perspectives of other families and specialized driving instructors-are seemingly difficult to find, costly, and/or perceived as having geographic- and time-related barriers. Conclusion: There is a critical need and opportunity for stakeholders of the autism community to both expand access to existing and develop novel driving-related resources for families with autistic adolescents, with a particular focus of supporting caregiver and adolescent mental health.


Why is this an important issue?: Many autistic teens and young adults rely on caregivers, siblings, family, and friends to give them rides to the places they need to go. Research has found that resources and services created specifically for autistic people can help them decide whether driving is right for them, and if so, then learn how to drive. However, little is known about if, and if so how, families find or use these resources and services. What was the purpose of this study?: This study had three goals: (1) learn what driving resources and services autistic teens and young adults (and their families) use, (2) learn how they find these resources and services, and (3) learn what other things they think would help them make decisions about driving and learn how to drive. What did the researchers do?: The researchers asked 33 caregivers of autistic teens and young adults without an intellectual disability (ID) (teens and young adults were 16­24 years old) questions about their experiences finding and using driving resources and services. These conversations were recorded and later typed out word for word. What were the results of the study?: Caregivers said that they spend a lot of time looking for driving resources and services for their autistic teen or young adult. Many resources and services were not easy to use or helpful. Caregivers said that behind-the-wheel driving instructors with specific training teaching autistic individuals were the most helpful and/or wanted resource. However, caregivers also said that these instructors and their services were hard to find, cost a lot of money, and require families to spend a lot of time training with them to get results. In the future, caregivers said that making it easier to find and get driving resources and services (e.g., making them less expensive) was necessary. Caregivers also had strong interest in their family participating in support groups related to driving. What do these findings add to what was already known?: Previous research has shown that training, resources, and services designed specifically for autistic people help prepare autistic teens and young adults to drive. Before our study, it was unclear if, and if so how, families actually use these resources and services in the real world, or outside of academic research. Families in our study said that it is hard to find or get access to driving resources and services, especially those created specifically for autistic populations. This difficulty is one reason why families think it is stressful and hard for autistic teens and young adults to learn how to drive. What are the potential weaknesses in the study?: We only asked caregivers who lived in the Northeast part of the United States questions, so our findings may not be true for all families. Also, this study only asked questions to caregivers of autistic teens and young adults who did not have an ID. How will these findings help autistic adults now or in the future?: Our findings can help autistic teens and young adults by showing what resources and services families use and want to use while they are learning how to drive or making decisions about if driving is right for them.

13.
Clin Psychol Rev ; 109: 102411, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38492246

RESUMO

Autistic adolescents are at increased risk of developing mental health problems. Improving psychological well-being could reduce the likelihood of such problems developing. Research has tended to prioritise the voices of non-autistic people and has neglected to consult autistic young people themselves. Our meta-synthesis aimed to systematically review qualitative research on the perspectives of autistic young people and their parents on the lived experience of psychological well-being. We conducted a pre-planned systematic search which identified 2552 papers, with 37 of those meeting full inclusion criteria. Included papers were published between 2008 and 2023, with three-quarters published since 2018. We extracted qualitative data from each paper pertaining to the lived experience of psychological well-being in autistic young people and conducted a thematic synthesis. We identified three themes; Walking a tightrope: the need for growth versus recharging through rest and familiarity; Developing a positive sense of self in the social world; Internally driven sources of happiness. Psychological interventions aiming to improve well-being in autistic young people should respect their autonomy and need for rest whilst encouraging growth and skills development, provide opportunities to understand social needs and differences, and promote opportunities to enjoy special interests.


Assuntos
Transtorno Autístico , Pais , Bem-Estar Psicológico , Adolescente , Humanos , Transtorno Autístico/psicologia , Pais/psicologia , Pesquisa Qualitativa
14.
Child Abuse Negl ; 151: 106751, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38531246

RESUMO

BACKGROUND: Exposure to violence has severe and lasting effects on development. Despite the body of research examining childhood exposures to violence and victimization, developmental outcomes during early adolescence are poorly understood. OBJECTIVE: To synthesize existing research on the effects of violence exposure on early adolescent development (youth 9-14 years old) and highlight areas for future research. METHOD: We conducted a systematic search of PubMed, CINAHL, Web of Science, Scopus, and EMBASE for articles published between 2012 and 2023. Included articles focused on violence exposure related to experiencing or observing community violence, witnessing domestic violence and/or being the victim of chronic physical abuse. RESULTS: Twenty-eight articles spanning four developmental domains were included: behavioral, biological, neurological, and social development. Behaviorally, violence exposure posed significant effects on both internalizing and externalizing symptoms. Biologically, violence exposure was strongly associated with advanced epigenetic age, accelerated puberty, and insomnia. Neurologically, violence exposure had significant associations with both structural and functional differences in the developing brain. Socially, violence exposure was related to poor school engagement, peer aggression, and low social support. CONCLUSION: This systematic review highlights varying effects of violence exposure on early adolescent development. The gaps presented should be addressed and implemented into clinical practice via evidence-based policies and procedures to ensure successful transition to adulthood.


Assuntos
Desenvolvimento do Adolescente , Exposição à Violência , Humanos , Adolescente , Criança , Exposição à Violência/psicologia
15.
Pediatr Clin North Am ; 71(2): 315-326, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38423723

RESUMO

When pediatricians, autistic people, and their families carefully consider and plan for the transition from pediatric care to adult care, there are better outcomes for patients. Pediatricians see their patients over time and are uniquely positioned to help prepare for the changes that come with the transition through adolescents to adulthood. Although programs such as Got Transition offer some guidance on how to navigate the transition from pediatric care to adult care, there is less information on how to help those on the autism spectrum and their families transition to adulthood in other ways.


Assuntos
Transtorno Autístico , Adulto , Criança , Humanos , Adolescente , Transtorno Autístico/terapia , Cuidadores , Pediatras
16.
Adv Life Course Res ; 59: 100594, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38342003

RESUMO

In 2020, COVID-19-related governmental restrictions forced individuals to radically change their habits, possibly impacting on their living arrangements. Whether COVID-19 affected young adults' propensity to leave the parental home is still unknown; Southern Europe is of particular interest, as youth experience the "latest-late" transition to adulthood, face uncertainty in the labor market, and receive low welfare support. Using EU-SILC longitudinal data from Greece, Spain, Italy, and Portugal, this study examines how home-leaving rates evolved in the short-term and explores the relationship between governmental restrictions, economic characteristics of households and young adults, and leaving home behaviors. Descriptive analyses reveal that the share of young adults leaving the parental home in Southern Europe between 2019 and 2020 slightly increased compared to previous years. Discrete-time event history models show that the propensity to leave the parental home increases with the stringency of policy measures. Young adults with the highest likelihood to leave home are employed individuals whose households are in the lowest income quintile as well as students from the highest income quintile, suggesting that, in these countries, residential independence is associated with either the acquisition of economic resources in the labor market or the availability of family resources. We interpret this result in favor of an "independence effect" exerted by COVID-19-related restrictions on young adults; future research might establish whether this trend is temporary or persistent over time.


Assuntos
COVID-19 , Pandemias , Adolescente , Humanos , COVID-19/epidemiologia , Europa (Continente)/epidemiologia , Renda , Pais
17.
Front Rehabil Sci ; 5: 1286875, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38322700

RESUMO

Background: When transitioning to adulthood, youth with disabilities and their families face many service gaps. Successful inter-agency collaborations can promote family-centred, inclusive transition support amenable to personal choice and health conditions. This paper reports the 3-year co-design process of an innovative transition service that links a pediatric hospital and adult service agencies and addresses key areas of transition preparedness with joint accountability. Methods: A team of pediatric rehabilitation professionals, adult service providers, young adults with disabilities and their families, and researchers engaged in a co-design process over three years. Following a design thinking (DT) framework, the team went through an iterative process of Empathize. Define, Ideation, Prototyping, and Testing phases. The trial-and-error process allowed for deeper reflection and an opportunity to pivot the design. Results: The co-design yielded Transitions Pop-ups, a nimble service model that can "pop up" at critical times and places to meet clients' urgent and emergent transition-related needs. Two pilot sessions were conducted at the testing phase with adult service agencies. The final model included five key elements: (1) community partnership; (2) targeted information sharing; (3) peer mentoring; (4) action (on-the-spot completion of a key transition task/activity such as submitting an adult funding application); and (5) warm handover. Conclusion: The co-design process highlighted the importance of open communication and iterative prototype testing as a means for trialing new ideas and clarifying the intent of the project. The DT framework optimally facilitated the co-development of a contextually relevant and sustainable service model for pediatric rehabilitation clients and families.

18.
Disabil Rehabil ; : 1-13, 2024 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-38314775

RESUMO

PURPOSE: To identify evidence of health literacy in young people with cerebral palsy (13-38 years), describe current strategies they use to access and build their health knowledge, and explore associations between health literacy and quality of life (QoL). METHODS: Four electronic databases were systematically searched (2001 to June 2023) to identify studies describing components of health literacy in this population. Two reviewers screened for eligibility, then extracted data and assessed methodological quality of included studies. Data were synthesised using a convergent integrated analysis framework and summarised with a narrative synthesis. RESULTS: Eleven studies were included (N = 363). Evidence of health literacy was demonstrated through a range of strategies young people employed to identify their specific information needs, develop health literacy skills, and learn experientially. The preferred method for building health knowledge was obtaining information from trusted sources. Information gaps were identified in topics such as ageing with cerebral palsy, sexuality and navigating intimate relationships. There were minimal data on health literacy and QoL. CONCLUSIONS: Young people with cerebral palsy want tailored and credible health information to increase participation in making informed health-related decisions. Building capacity and development of self-efficacy may assist with the identification of emerging health literacy needs.


Despite health literacy being a key indicator of quality chronic disease self-management for people with disabilities, outcomes are infrequently measured in young people with cerebral palsy.Capacity building, development of identity and self-management skills were identified as important components of health literacy in young people with cerebral palsy.Topic areas of unmet health information include relationship management, sexual health and how to navigate the bodily changes associated with ageing with cerebral palsy.Providing adolescents with cerebral palsy earlier opportunities to build health literacy may facilitate increased autonomy in healthcare decision making during the transition to adulthood.

19.
Artigo em Inglês | MEDLINE | ID: mdl-38283595

RESUMO

This study considers the multigenerational consequences of wealth transmission for the transition to young adulthood. Using a wider set of outcomes than has previously been considered, and by analyzing parental and grandparental wealth simultaneously, this work underscores the salience of multiple generations of wealth as a predictor for young adult well-being. Data comes from the US Panel Study of Income Dynamics on a sample of youth followed from mid-adolescence until the age of 20. Results from linear regression models indicate that parental wealth was associated with increases in the probability of college attendance and steady employment and inversely associated with the likelihood of nonmarital birth and idleness. Grandparental wealth predicted non-educational outcomes at least as well as parental wealth did and explained more variance in young adults' outcomes when parental wealth was lower. The association between parental wealth and non-educational outcomes suggest that wealth may inform young adults' broader life course by predicting outcomes other than college attendance. Grandparental wealth may serve a compensatory function for children with low parental wealth. Results suggest that persistently low wealth across multiple generations may impede the successful transition to young adulthood.

20.
Healthcare (Basel) ; 12(1)2024 Jan 03.
Artigo em Inglês | MEDLINE | ID: mdl-38201021

RESUMO

During the transition to adulthood, individuals diagnosed with intellectual disability (ID) and their family caregivers have unique experiences. This scoping review studies the sources of the family caregiver's objective burden, support, coping mechanisms, positive caregiving, and quality of life to understand the caregiver's adaptation process when the individual with ID transits to adulthood, according to Joanna Briggs Institute (JBI) Scoping Review methodology guidelines. The inclusion criteria included studies of family caregivers of any age who provide unpaid care and live with individuals diagnosed with ID who are transitioning to adulthood. Of 2875 articles identified, 12 published studies were included. The main themes included caregivers reporting dissatisfaction with the available adult services and exhaustion from being a caregiver. Overall, a vicious cycle of likely increased demands during the transition, with caregivers not being prepared to cope with these demands while concurrently being dissatisfied with the adult services system, leads the caregivers to develop a pervasive sense of helplessness. Future studies would benefit from recruiting caregivers from sources other than adult-only service centres and using qualitative (to identify the broad aspects of the key factors) and quantitative (to identify the significant differences between the key factors) methodologies.

SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA