RESUMEN
INTRODUCTION: The Westmead Centre for Adolescent and Young Adult Health is a purpose-built facility supporting integrated care for young patients with a variety of long-term health conditions transitioning from paediatric services at the Children's Hospital at Westmead to adult services at Westmead Hospital, Australia. METHODS AND ANALYSIS: This protocol outlines a prospective, within-subjects, repeated-measures longitudinal cohort study to measure self-reported experiences and outcomes of patients (12-25 years) and carers accessing transition care at the Centre for Adolescent and Young Adult Health. Longitudinal self-report data will be collected using Research Electronic Data Capture surveys at the date of service entry (recruitment baseline), with follow-ups occurring at 6 months, 12 months, 18 months and after transfer to adult services. Surveys include validated demographic, general health and psychosocial questionnaires. Participant survey responses will be linked to routinely recorded data from hospital medical records. Hospital medical records data will be extracted for the 12 months prior to service entry up to 18 months post service entry. All young people accessing services at the Centre for Adolescent and Young Adult Health that meet inclusion criteria will be invited to join the study with research processes to be embedded into routine practices at the site. We expect a sample of approximately 225 patients with a minimum sample of 65 paired responses required to examine pre-post changes in patient distress. Data analysis will include standard descriptive statistics and paired-sample tests. Regression models and Kaplan-Meier method for time-to-event outcomes will be used to analyse data once sample size and test requirements are satisfied. ETHICS AND DISSEMINATION: The study has ethics approval through the Sydney Children's Hospitals Network Human Research Ethics Committee (2021/ETH11125) and site-specific approvals from the Western Sydney Local Health District (2021/STE03184) and the Sydney Children's Hospitals Network (2039/STE00977). Patients under the age of 18 will require parental/carer consent to participate in the study. Patients over 18 years can provide informed consent for their participation in the research. Dissemination of research will occur through publication of peer-reviewed journal reports and conference presentations using aggregated data that precludes the identification of individuals. Through this work, we hope to develop a digital common that can be shared with other researchers and clinicians wanting to develop a standardised and shared approach to the measurement of patient outcomes and experiences in transition care.
Asunto(s)
Cuidadores , Transición a la Atención de Adultos , Humanos , Adolescente , Estudios Longitudinales , Estudios Prospectivos , Niño , Adulto Joven , Cuidadores/psicología , Femenino , Masculino , Adulto , Proyectos de Investigación , Australia , Autoinforme , Encuestas y CuestionariosRESUMEN
OBJECTIVES: Government policies that support the health and wellbeing of young people (aged 10 to 25) can have important individual and societal impacts. The aim of this study was to explore policy actor perspectives on the development and implementation of Australian government policies focussed on the health and wellbeing of young people. METHODS: We utilised a qualitative research design consisting of semi-structured interviews with policy actors with experience working with Australian youth health policies. Our interview guide and analyses were informed by the Consolidated Framework for Implementation Research (CFIR). We interviewed 19 participants from various national, state, and territory bodies. RESULTS: Several specific barriers and facilitators to policy development and implementation were identified using the Consolidated Framework for Implementation Research. Key policy development barriers were limited available resources (e.g. staffing and funding) and low relative priority within health and political systems. Key policy implementation barriers were limited available resources, limited policy compatibility with health services, cosmopolitanism issues related to interagency collaboration, and a lack of policy evaluation. Meaningful engagement of young people could also be improved. CONCLUSIONS: Although Australian youth health policies are perceived as evidence-based and comprehensively developed, the ability to promote implementation remains stalled. IMPLICATIONS FOR PUBLIC HEALTH: The development of policy implementation plans, monitoring and evaluation mechanisms, funding and resources, and a strong commitment to removing barriers to working across multiple departments and systems is required to improve outcomes for young people.
Asunto(s)
Política de Salud , Formulación de Políticas , Humanos , Adolescente , Adulto Joven , Australia , Accesibilidad a los Servicios de Salud , Investigación CualitativaRESUMEN
Objective: This study aims to explore young people's perspectives of emerging technologies and health systems research in an adolescent health community of practice. Methods: The context of this integrated knowledge translation study is the Wellbeing Health & Youth Centre of Research Excellence in Adolescent Health. A theory-building, non-systematic review was conducted to examine the concepts and interrelationships of emerging technologies associated with digital innovation and health systems. This typology informed the design of an online workshop with young people to explore their views, concerns, and ideas about health systems research. Results: A digital innovation typology was identified to differentiate and explain emerging technology concepts and interrelationships that can be applied to the health systems context. Aligned with this typology, youth perspectives about digital health challenges and opportunities were identified to support future research, policy, and practice. Conclusion: The integrated findings from this study can assist the navigation of complex emerging technologies, and the negotiation of equitable health systems research, between youth and adult stakeholders. Further, with these typology-related resources, mutual learning and the public involvement of young people in health systems research and priority setting agendas can be supported.
RESUMEN
BACKGROUND: Public involvement in health research and its translation is well recognized to improve health interventions. However, this approach is insufficiently practised and evidenced in relation to young people. This paper presents an analysis of the process of co-producing a framework, partnership model and a growing network of young people informing and guiding an adolescent health research community of practice. METHODS: A Living Lab is a participatory research approach that brings together a broad range of stakeholders in iterative cycles of research, design, development, pilot-testing, evaluation and delivery to implement effective responses to complex phenomena. The geographical setting for this study was Sydney, NSW, Australia, and involved both youth and adult stakeholders from this region. The study spanned three phases between July 2018 and January 2021, and data collection included a range of workshops, a roundtable discussion and an online survey. RESULTS: The co-production process resulted in three key outputs: first, an engagement framework to guide youth participation in health research; second, a partnership model to sustain youth and adult stakeholder collaboration; third, the growth of the public involvement of young people with a range of projects and partners. CONCLUSIONS: This study investigated the process of co-producing knowledge with young people in an adolescent health community of practice. A reflexive process supported youth and adult stakeholders to collaboratively investigate, design and pilot-test approaches that embed young people's engagement in adolescent health research. Shared values and iterative methods for co-production can assist in advancing mutual learning, commitment and trust in specific adolescent health research contexts. PUBLIC CONTRIBUTION: Young people guiding and informing an adolescent health research community of practice were involved in this study, and one of the participants is a paper co-author.
Asunto(s)
Salud del Adolescente , Conocimiento , Adolescente , Adulto , Humanos , AustraliaRESUMEN
BACKGROUND: Multiple theories, models and frameworks have been developed to assist implementation of evidence-based practice. However, to date there has been no review of implementation literature specific to adolescent healthcare. This integrative review therefore aimed to determine what implementation science theories, models and frameworks have been applied, what elements of these frameworks have been identified as influential in promoting the implementation and sustainability of service intervention, and to what extent, in what capacity and at what time points has the contribution of adolescent consumer perspectives on evidence implementation been considered. METHODS: An integrative design was used and reported based on a modified form of the PRISMA (2020) checklist. Seven databases were searched for English language primary research which included any implementation science theory, model or framework developed for/with adolescents or applied in relation to adolescent healthcare services within the past 10 years. Content and thematic analysis were applied with the Consolidated Framework for Implementation Research (CFIR) used to frame analysis of the barriers and facilitators to effective implementation of evidence-informed interventions within youth health settings. RESULTS: From 8717 citations, 13 papers reporting 12 studies were retained. Nine different implementation science theories, frameworks or approaches were applied; six of 12 studies used the CFIR, solely or with other models. All CFIR domains were represented as facilitators and barriers for implementation in included studies. However, there was little or no inclusion of adolescents in the development or review of these initiatives. Only three mentioned youth input, occurring in the pre-implementation or implementation stages. CONCLUSIONS: The few studies found for this review highlight the internationally under-developed nature of this topic. Flagging the importance of the unique characteristics of this particular age group, and of the interventions and strategies to target it, the minimal input of adolescent consumers is cause for concern. Further research is clearly needed and must ensure that youth consumers are engaged from the start and consistently throughout; that their voice is prioritised and not tokenistic; that their contribution is taken seriously. Only then will age-appropriate evidence implementation enable innovations in youth health services to achieve the evidence-based outcomes they offer. TRIAL REGISTRATION: PROSPERO 2020 CRD42020201142 https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=201142.
Asunto(s)
Práctica Clínica Basada en la Evidencia , Ciencia de la Implementación , Adolescente , Atención a la Salud , Investigación sobre Servicios de Salud , HumanosRESUMEN
OBJECTIVE: The present study aimed to explore the feasibility and potential benefits of deploying virtual reality (VR) for adolescents in the ED. METHODS: This multi-centre study was undertaken in paediatric and adult EDs in two university teaching hospitals. Twenty-six participants who had voluntarily attended the ED received the VR intervention. Pre- and post-measures assessing changes in state anxiety, stress and affect, and physical biomarkers were obtained. RESULTS: The use of VR intervention was associated with significant reductions in distress (Short State Stress Questionnaire - Distress Subscale; t = 4.55, P < 0.001) and negative affect (the International Positive and Negative Affect Scale - Short Form version; t = 4.99, P < 0.001). Most participants chose 'Netflix' as their content of choice. The technology was well received by the participants with subjective reports indicating that receiving VR intervention was 'insanely cool', 'takes you away from what's actually happening' and some participants felt 'privileged to get this experience in a hospital'. CONCLUSIONS: VR technology can effectively be used in EDs to assist adolescents and young adults better manage their distress and take steps towards activating more self-control mechanisms that will in turn allow for more meaningful engagements to be established with health clinicians. This technology has broad implications for reducing distress in adolescents in a variety of clinical contexts.
Asunto(s)
Realidad Virtual , Adolescente , Ansiedad/prevención & control , Niño , Servicio de Urgencia en Hospital , Estudios de Factibilidad , Humanos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
OBJECTIVE: Young people (10-24 years old) with mental health concerns are increasingly presenting to hospital emergency departments (EDs). The purpose of this review was to identify the core components and outcomes of mental health interventions for young people that are initiated in the ED, such that they are delivered in the ED and/or by ED health workers. METHODS: Six electronic databases were systematically searched. Primary peer-reviewed qualitative or quantitative studies describing an ED-initiated mental health intervention for young people published between 2009 and 2020 were included. RESULTS: Nine studies met the inclusion criteria. The included studies demonstrated that compared with traditional ED care, ED-initiated mental health interventions lead to improved efficiency of care and decreased length of stay, and a core component of this care was its delivery by allied health practitioners with mental health expertise. The studies were limited by focusing on service efficiencies rather than patient outcomes. Further limitations were the exclusion of young people with complex mental health needs and/or comorbidities and not measuring long-term positive mental health outcomes, including representations and whether young people were connected with community health services. CONCLUSIONS: This systematic review demonstrated that ED-initiated mental health interventions result in improved service outcomes, but further innovation and robust evaluation are required. Future research should determine whether these interventions lead to better clinical outcomes for young people and staff to inform the development of best practice recommendations for ED-initiated mental health care for young people presenting to the ED.
Asunto(s)
Servicio de Urgencia en Hospital , Salud Mental , Adolescente , Adulto , Niño , Personal de Salud , Humanos , Adulto JovenRESUMEN
AIM: Emerging evidence suggests that pubertal tempo, that is rate of passage through puberty, has relevance to adolescent mood and behaviour. However, its wider health and developmental significance remain unclear. This systematic review sought to clarify the relationship of pubertal tempo to indicators of health and development, and to document tempo definitions and pubertal durations reported in the literature. METHODS: Eight electronic databases were searched from earliest record to July 2018. Study eligibility: healthy participants; age 8-21 years; ≥2 longitudinal measures of puberty; analysis of tempo against a health or developmental indicator. RESULTS: Thirty-eight studies met eligibility, and these reported on diverse tempo definitions and seven health- and development-related domains. Data sets with varying tempo definitions converged on an association of rapid pubertal progression to: (a) higher adiposity during childhood and adolescence in both sexes; and (b) lower psychosocial well-being in adolescent males. Later thelarche unanimously predicted faster progression to menarche in females, but this compensation was largely undetected when alternate definitions of pubertal timing and/or tempo were used. Duration of puberty ranged from 2.5-4.1 years. CONCLUSION: Pubertal tempo may be clinically relevant when considering trajectories of adiposity and psychosocial well-being among adolescents, especially males. Consensus on the definition of tempo would facilitate between-study comparisons.
Asunto(s)
Salud del Adolescente , Pubertad , Adiposidad , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Menarquia , Adulto JovenRESUMEN
BACKGROUND: More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. OBJECTIVE: This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. METHODS: We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. RESULTS: A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant's satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. CONCLUSIONS: There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. TRIAL REGISTRATION: PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611.
Asunto(s)
Aplicaciones Móviles/normas , Automanejo/métodos , Adulto , Enfermedad Crónica , Humanos , Estudios Prospectivos , Adulto JovenRESUMEN
Purpose: To explore and highlight the opportunities and challenges that underlie the development of survivorship care for adolescent and young adult cancer. Methods: A multimethod approach was used, with perspectives of survivors, relatives, and health care professionals elicited through an online survey, focus group, and semistructured interviews. Results: Four themes were identified using thematic analysis: adjusting to life after cancer, transition to community-based care, ongoing change and reform of health care, and supporting survivorship services. Adolescents and young adults (AYAs) and their families struggled with the transition from active treatment, which was complicated by ongoing disease/treatment impacts and a collective dearth of knowledge and resources on how to support AYAs during this time. Limited confidence and communication in patient-general practitioner relationships complicated the transition to community-based care, with treatment summaries and survivorship care plans an underused resource. A growing movement toward integrated, holistic, and equitable survivorship care was identified, but progress has been fragmented and under-resourced. Further research, funding, and advocacy are needed to support ongoing survivorship initiatives. Conclusions: Although some survivorship concerns are common across age groups, others are specific to AYAs' developmental stage, emphasizing the need for integrated, age-appropriate, and targeted survivorship services for AYAs. The transition from active treatment to longer term survivorship presents challenges for ongoing clinical care and support; change is needed at individual, service, and system levels to provide quality, sustainable, and integrated care to AYA cancer survivors.
Asunto(s)
Neoplasias/terapia , Adolescente , Adulto , Femenino , Humanos , Masculino , Neoplasias/mortalidad , Supervivencia , Adulto JovenRESUMEN
AIM: More than 26 000 Australians aged 12-24 years experience homelessness, yet data on the health status of homeless youth remain limited. The aim of this study was to describe the health of young people attending a youth health service in Western Sydney who were experiencing homelessness. METHODS: Retrospective case note review for clients aged 12-25 years attending Youth Health Services in Western Sydney. Extracted data included: homelessness status; demographics; physical health issues; mental health issues; involvement with juvenile justice; and disengagement from education or employment. RESULTS: Just under half of the 180 clients attending a Youth Health Service in Western Sydney were homeless, and an additional 15 young people who were not currently homeless nominated homelessness as a presenting issue. In comparison with currently domiciled young people, homeless youth were less likely to have a regular general practitioner and more likely to nominate a physical health concern as a presenting issue, although there was no difference between groups in terms of diagnosed mental or physical health conditions. Considered as a whole, the sample showed high rates of acute physical symptoms, physical trauma, psychological distress and self-harm. CONCLUSIONS: Youth homelessness is associated with risk of both poor physical and mental health. As much of youth homelessness is hidden, health-care providers need to ensure that they inquire about homelessness status, and have an awareness of potentially complex multi-morbidities in the physical and mental health of young marginalised people presenting to health services.
Asunto(s)
Estado de Salud , Jóvenes sin Hogar , Marginación Social , Adolescente , Australia , Bases de Datos Factuales , Femenino , Humanos , Masculino , Satisfacción Personal , Atención Primaria de Salud , Estudios Retrospectivos , Conducta Autodestructiva , Adulto JovenRESUMEN
Parenting skills training is an established means of treating challenging behaviours among young children, but there has been limited research on its efficacy when used to treat challenging adolescent behaviour. The aim of this systematic review was to evaluate the efficacy and effectiveness of community-based parenting interventions designed for families with adolescents, as judged in terms of increased knowledge and skills among parents, improvements in adolescent behaviour, and program feasibility within community settings. Results indicated that intervention group parents typically made greater gains than did control group parents on measures of good parenting, with positive flow-on effects to some aspects of challenging adolescent behaviours. Limited evidence suggests that group and individual intervention formats may be equally effective and that there is no advantage to the participation of the target adolescent in the intervention.
Asunto(s)
Conducta del Adolescente/psicología , Servicios de Salud Comunitaria/métodos , Responsabilidad Parental/psicología , Padres/educación , Adolescente , Niño , Femenino , Humanos , MasculinoRESUMEN
Young adults are gaining weight faster than any age group. This weight gain and the appearance of obesity-related comorbidities often commence in adolescence. Psychosocial distress and mental health issues are common and debilitating, and treatment approaches are likely to be similar to those for adolescents. At the same time, young adults may have physical morbidities which will continue and worsen throughout adulthood, such as hypertension, diabetes and polycystic ovarian syndrome. Health consequences of obesity are challenging to manage in young adults as their symptoms may be minimal, they are less likely to engage with healthcare due to other life priorities and their neurocognitive developmental stage makes therapy adherence difficult. Clinicians who manage young adults with obesity need to be aware of these age-specific challenges, as well as the sexual and reproductive health concerns that are present in this age group.
Asunto(s)
Obesidad , Animales , Humanos , Enfermedades Musculoesqueléticas/etiología , Obesidad/complicaciones , Reproducción , Conducta Sexual , Estrés Psicológico , Aumento de Peso , Adulto JovenRESUMEN
PURPOSE OF REVIEW: The psychosocial needs of adolescent and young adult (AYA) siblings of cancer patients are easily overlooked. Accordingly, the evidence base informing short and long-term outcomes for these young people is sparse. This review provides an overview of recent research highlighting the experiences, unmet needs and psychosocial issues of AYA siblings, together with recent interventions. RECENT FINDINGS: The reviewed studies bring focus to the range of informational and supportive care needs that typically remain unmet in AYA siblings. The limited number of interventions designed specifically for this group not only appear to have positive results but also underscore the need for effective risk stratification preintervention and tailoring of interventions to the specific needs of participants. SUMMARY: AYA siblings of cancer patients display a range of psychosocial symptoms that can be ameliorated with age-appropriate information and targeted intervention programs. Limited research suggests that the majority of unmet needs for AYA siblings seem to occur during the acute phases of the brother or sister's initial diagnosis, treatment and relapse. Further research is required on siblings' long-term psychosocial assessment and management, bereavement, family systems, the impact of the cancer experience on siblings' personality and identity, and the development and evaluation of tailored psychosocial interventions. Policy research is also required to identify opportunities for expanding established healthcare systems to include sibling support.
Asunto(s)
Familia/psicología , Neoplasias/psicología , Hermanos/psicología , Sobrevivientes/psicología , Adolescente , Adulto , Humanos , Neoplasias/epidemiología , Adulto JovenRESUMEN
OBJECTIVES: To review the characteristics of cancer in the adolescence and young adult age group; the medical, psychosocial and behavioral late effects; survivorship care planning and transition; current research priorities; and practice implications. DATA SOURCE: Published articles, research studies and position statements. CONCLUSION: Survivors of cancers that occurred during adolescence and young adulthood (AYA) are confronted with the dual demands of managing their transition to independent adulthood, concurrently with their transition from cancer patient to cancer survivors, with an associated reduction in support from medical services. AYA survivors also face complex medical, psychosocial and behavioral late effects, including fertility and mental health issues. IMPLICATIONS FOR NURSING PRACTICE: An understanding of the impact of cancer diagnoses among this age group, including survivors' abilities to reintegrate into 'normal' life and potential long term consequences, is necessary to provide the best support. This care and support can be enhanced through multidisciplinary teams who work together to address the medical and psychosocial needs of AYAs diagnosed with cancer.
Asunto(s)
Continuidad de la Atención al Paciente/organización & administración , Neoplasias/psicología , Neoplasias/terapia , Calidad de Vida , Sobrevivientes/psicología , Transición a la Atención de Adultos/organización & administración , Adaptación Psicológica , Adolescente , Factores de Edad , Femenino , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Neoplasias/mortalidad , Grupo de Atención al Paciente/organización & administración , Psicología , Medición de Riesgo , Sobrevivientes/estadística & datos numéricos , Resultado del Tratamiento , Adulto JovenRESUMEN
BACKGROUND: Homelessness during adolescence impacts negatively upon young people's physical and mental wellbeing. To be effective, programs aimed at addressing the health needs of this population must include knowledge of both the presenting and underlying acute and chronic conditions that characterise this high risk group of youth. METHODS: We undertook a systematic review of the international literature for studies that used validated instruments and techniques to diagnose prevalence rates of physical and mental health disorders in homeless adolescents. RESULTS: Twenty-one studies fulfilled the selection criteria. Of these, nine studies examined mental health diagnoses including depression, post-traumatic stress disorder, anxiety and substance abuse disorders. With one exception, the remaining twelve studies all related to sexually transmitted infections. CONCLUSION: Homeless adolescents are diagnosed with widely varying rates of mental health disorders and high rates of sexually transmitted infection. Other likely chronic and acute physical conditions appear to be neglected in the published research.
Asunto(s)
Estado de Salud , Jóvenes sin Hogar/estadística & datos numéricos , Adolescente , Niño , Femenino , Humanos , Masculino , Trastornos Mentales/epidemiología , Salud Mental/estadística & datos numéricos , Adulto JovenRESUMEN
OBJECTIVE: The aim of this study was to gain an understanding of the factors that facilitate entry of young people into the Australian mental health care system with a view to developing headspace service delivery in youth-friendly directions. METHOD: Fifteen semi-structured interviews were conducted with experienced mental health help-seekers in early adulthood. RESULTS: Social factors involving families, friends and professionals dominated discussions about the initiation and voluntary continuation of mental health care. CONCLUSIONS: A range of social interactions combine to facilitate the entry of young people into care. The actions of families and friends are very important for the initiation of care while the clinicians' modes of communicating with young people are critical in making the experience of care comfortable and worth the perseverance. If genuine service delivery reform is to be achieved, taking account of the views of young people who have overcome the well-documented obstacles to care is invaluable for the ongoing development of youth-friendly services such as those offered by headspace.