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1.
Psychooncology ; 33(4): e6317, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38573227

RESUMEN

INTRODUCTION: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs. METHODS: A literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions. RESULTS: Three key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience. CONCLUSION: Supporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.


Asunto(s)
Comunicación , Neoplasias , Niño , Humanos , Adolescente , Adulto Joven , Anciano , Narración , Emociones , Personal de Salud , Neoplasias/terapia
2.
Epilepsy Behav ; 149: 109543, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38006842

RESUMEN

BACKGROUND AND PURPOSE: Children and young people (CYP) with epilepsy see healthcare professionals (HCPs) for management of their seizures but may require information, advice and support with a range of broader topics. The purpose of the survey was to identify from HCPs, which topics CYP with epilepsy and their parents/carers ask about other than seizure management, and how adequately HCPs feel able to support them with these topics. METHOD: A cross-sectional online survey was used to collect data. Adverts which included a link to the survey were shared via social media channels, professional networks and United Kingdom (UK)-based epilepsy networks. Eighty-eight HCPs in the UK (who worked with CYP with epilepsy and their parents/carers) completed the survey. Quantitative data are presented descriptively. Qualitative data (free-text responses) were reflexively thematically analysed. RESULTS: CYP with epilepsy and their parents/carers were reported to ask HCPs for information, advice and support about a range of topics, most commonly, cognition and mental health. CYP were reported as also frequently asking about aspects of their social life while parents/carers commonly asked about sleep. HCPs varied in how able they felt to adequately support families about these topics, as well as in their views about which resources could be most useful. Having insufficient time and a lack of suitable services and resources to refer to, or draw upon, were key barriers to HCPs being able to support CYP and their families. DISCUSSION: Findings highlight the broad array of topics CYP with epilepsy and their families are reported as seeking support for. HCPs identified gaps in services and their abilities to meet those needs. There appeared to be a mismatch between the support that families were seeking and the ability of HCPs to meet these needs. Findings have implications for how HCPs could best be supported to deal with topics raised by CYP and families in clinic, highlighting the potential usefulness of informational resources on key topics for HCPs, parents/carers and CYP.


Asunto(s)
Cuidadores , Epilepsia , Niño , Humanos , Adolescente , Cuidadores/psicología , Estudios Transversales , Padres/psicología , Epilepsia/diagnóstico , Epilepsia/terapia , Epilepsia/psicología , Convulsiones , Derivación y Consulta , Atención a la Salud
3.
BMC Psychiatry ; 23(1): 328, 2023 05 10.
Artículo en Inglés | MEDLINE | ID: mdl-37165351

RESUMEN

BACKGROUND: Social prescribing is a mechanism of connecting patients with non-medical forms of support within the community and has been shown to improve mental health and wellbeing in adult populations. In the last few years, it has been used in child and youth settings with promising results. Currently, pathways are being developed for social prescribing in Child and Adolescent Mental Health Services (CAMHS) to support children and young people on treatment waiting lists. The Wellbeing While Waiting study will evaluate whether social prescribing benefits the mental health and wellbeing of children and young people. METHODS: This study utilises an observational, hybrid type II implementation-effectiveness design. Up to ten CAMHS who are developing social prescribing pathways as part of a programme run across England with support from the Social Prescribing Youth Network will participate. Outcomes for children and young people receiving social prescribing whilst on CAMHS waiting lists will be compared to a control group recruited prior to the pathway roll-out. Questionnaire data will be collected at baseline, 3 months and 6 months. Primary outcomes for children and young people are mental health symptoms (including anxiety, depression, stress, emotional and behavioural difficulties). Secondary outcomes include: loneliness, resilience, happiness, whether life is worthwhile, life satisfaction, and service use. An implementation strand using questionnaires and interviews will explore the acceptability, feasibility, and suitability of the pathway, potential mechanisms of action and their moderating effects on the outcomes of interest, as well as the perceived impact of social prescribing. Questionnaire data will be analysed mainly using difference-in-differences or controlled interrupted time series analysis. Interview data will be analysed using reflexive thematic analysis. DISCUSSION: The Wellbeing While Waiting study will provide the first rigorous evidence of the impact of social prescribing for children and young people on waiting lists for mental health treatment. Findings will help inform the prioritisation, commissioning, and running of social prescribing in other CAMHS. To maximise impact, findings will be available on the study website ( https://sbbresearch.org ) and disseminated via national and international networks. TRIAL REGISTRATION: N/A.


Asunto(s)
Servicios de Salud Mental , Salud Mental , Adulto , Niño , Adolescente , Humanos , Inglaterra , Psicoterapia , Ansiedad , Estudios Observacionales como Asunto
4.
Artículo en Inglés | MEDLINE | ID: mdl-37405485

RESUMEN

There is growing interest in the role of Social Prescribing (SP) to help promote mental well-being and support individuals with mental health difficulties. Yet, implementation of SP to children and young people (CYP) has proved slow and underdeveloped compared with adult populations. Understanding the barriers and facilitators will help key stakeholders to better embed SP for CYP into practice. Using the Theoretical Domains Framework (TDF), a comprehensive, theoretical-led framework, underpinned by 33 behaviour change theories and 128 constructs, perceived barriers and facilitators to SP were investigated. The sample comprised of 11 Link Workers and 9 individuals involved in facilitating SP with CYP, who took part in semi-structured interviews. Transcripts were analysed using a deductive thematic analysis, and themes were coded under each theoretical domain. Overall, 33 barriers and facilitators for SP were identified across 12 domains of the TDF. Under capability, barriers and facilitators were found for knowledge, skills, memory/attention/decision making processes, and behavioural regulation. For opportunity, barriers and facilitators were found for social/professional influences, as well as environmental context and resources. Finally, for motivation, domains covered included: beliefs about consequences, beliefs about capabilities, optimism, motivations/goals, reinforcement, and emotions. Findings suggest that a wide range of barriers and facilitators affect the implementation of CYP SP to improve mental health and well-being. Interventions which target different domains related to capability, opportunity and motivation should be developed to better facilitate CYP SP.

5.
Artículo en Inglés | MEDLINE | ID: mdl-36637482

RESUMEN

Reviews into universal interventions to improve help seeking in young people focus on specific concepts, such as behaviour, do not differentiate between interpersonal and intrapersonal help seeking, and often report on statistical significance, rather than effect size. The aim of this review was to address the gaps highlighted above, to investigate the impact of universal, school-based interventions on help-seeking in children and young people, as well as to explore longer term impact. Four databases were searched. Data were extracted on country of origin, design, participant, school, and intervention characteristics, the help-seeking concept measured (e.g. knowledge, attitude/intention, behaviour), the duration between baseline and each follow-up (if applicable) and effect sizes at each follow-up. Quality assessment of the studies was undertaken using the Effective Public Health Practice Project (EPHPP) quality assessment tool. Overall, 14 different interventions met inclusion criteria. The majority of the studies were rated low in the quality assessment. Three constructs were most frequently reported a) intrapersonal attitudes towards help-seeking, b) interpersonal attitudes towards help-seeking and c) intrapersonal intended help-seeking. Findings around intervention effect were mixed. There was tentative evidence that interventions impacting interpersonal attitudes produced small effect sizes when measured between 3 and 6 months post intervention and that when effect sizes were initially observed intrapersonal attitudes, this remained at 3-6 month follow-up. Further work should pay attention to implementation factors, understanding the core ingredients needed to deliver effective interventions and whether embedding mental health education could help sustain or top up effect sizes from help-seeking interventions.

6.
J Orthod ; 50(2): 229-236, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37026577

RESUMEN

OBJECTIVE: To explore the experiences of young people and their parents regarding the impact on school performance due to time away from school for orthodontic appointments and to explore their views about a possible extension to the current service. DESIGN: A qualitative study using semi-structured interviews. SETTING: UK district hospitals. PARTICIPANTS: A total of 11 pairs of interviewees: young people undergoing fixed appliances and their parents. METHODS: Semi-structured interviews were conducted with young people and their parents. The interviews were audio recorded and transcribed verbatim. A framework approach was used to analyse the data. RESULTS: A thematic analysis of the data identified five main themes which were as follows: (1) expectations of the treatment process and appointments; (2) impact of school absences and treatment; (3) appointments; (4) implications for young people, parents and others; and (5) satisfaction with treatment. These themes were then further subdivided and analysed. CONCLUSION: Young people and their parents felt that attending appointments for orthodontic treatment had minimal impact on a young person's school performance. However, some young people did engage in coping mechanisms in order to ensure this was the case. Young people and their parents advised they were satisfied with the process of the treatment despite the time missed at school/work. Some young people and their parents saw a real benefit to appointments that could be fitted into a 'NHS seven-day' service model, but this did not apply to all interviewees.


Asunto(s)
Aparatos Ortodóncicos Fijos , Padres , Humanos , Adolescente , Investigación Cualitativa
7.
BMC Public Health ; 22(1): 2430, 2022 12 27.
Artículo en Inglés | MEDLINE | ID: mdl-36575509

RESUMEN

BACKGROUND: Universities are increasingly recognised as institutions where health and wellbeing can be promoted to maximise academic outcomes, career transitions, and lifelong positive health behaviours. There is concern about the mental health of university students and other factors which affect academic outcomes particularly for subgroups such as international students. There are few cohort studies of the breadth of issues that can impact on mental health and academic outcomes for both local and international students. We conducted a baseline prevalence survey of students at a large Australian university covering health, academic, and social determinants of wellbeing. The purpose was to inform the university's new student health and wellbeing framework with a view to follow-up to determine predictors of mental ill-health and academic outcomes in the subsequent year. In this paper we present the baseline prevalence data and report on selected mental health and health care access issues for local and international students. METHODS: The entire university population as of April 2019 of over 56,375 students aged 18 or above were invited to complete the online survey. Questions explored eight domains: demographic characteristics, general health and wellbeing, mental health, risk taking behaviours, psychosocial stressors, learning and academic factors, social and cultural environment, and awareness of and access to health and wellbeing services. Records of academic results were also accessed and matched with survey data for a large subset of students providing consent. RESULTS: Fourteen thousand eight hundred eighty (26.4%) students commenced our survey and were representative of the entire student population on demographic characteristics. Three quarters were aged between 18 to 25 years and one third were international students. Eighty-five percent consented to access of their academic records. Similar proportions of local and international students experienced symptoms of a depression or anxiety disorder, however international students were less aware of and less likely to access available health services both inside and external to the university. We also reported on the prevalence of: general lifestyle factors (diet, exercise, amount of daily sleep); risk-taking behaviours (including alcohol, tobacco and other drug use; unprotected sexual activity); psychosocial stressors (financial, intimate partner violence, discrimination, academic stressors, acculturative stress); subjects failed; resilience; social supports; social media use; and health services accessed online. CONCLUSIONS: This rigorous and comprehensive examination of the health status of local and international students in an Australian university student population establishes the prevalence of mental health issues and other psychosocial determinants of health and wellbeing, along with academic performance. This study will inform a university-wide student wellbeing framework to guide health and wellbeing promotion and is a baseline for a 12-month follow-up of the cohort in 2020 during the COVID-19 pandemic.


Asunto(s)
Rendimiento Académico , COVID-19 , Humanos , Adolescente , Adulto Joven , Adulto , Universidades , Pandemias , Australia/epidemiología , Estudiantes , Promoción de la Salud
8.
J Appl Res Intellect Disabil ; 35(3): 675-690, 2022 May.
Artículo en Inglés | MEDLINE | ID: mdl-35098618

RESUMEN

BACKGROUND: Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. METHOD: A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic analysis. RESULTS: Eleven of the 735 publications extracted identified the following themes: distress, communication, partnerships, identification, training and education and optimising care. Consistent findings suggest that HCS feel unskilled in providing care for the child with intellectual disability in hospital settings. HCS recognised the role of parents as experts of their child but also feel unsettled when challenged by them. Skills in communicating with the child, developing partnerships with parents, having identification systems to plan for reasonable adjustments was key to improving care. CONCLUSIONS: Organisational advocacy, practical skills training in identification, reasonable adjustments and improved attitudes are important for HCS to provide safe and quality care.


Asunto(s)
Discapacidad Intelectual , Niño , Atención a la Salud , Hospitales , Humanos , Padres , Calidad de la Atención de Salud
9.
J Adolesc ; 92: 194-236, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-34583269

RESUMEN

INTRODUCTION AND OBJECTIVES: To conduct a systematic literature review of intervention programs designed to promote healthy romantic relationships in youth (aged 12-25 years). The focus was on universal interventions that have the potential to be effective and widely implemented. METHODS: We systematically searched PubMed, PsycINFO, Social Science Database, and Embase. Articles were included if they were a randomized controlled trial (RCT) or quasi-experimental study and reported on a universal intervention aimed at promoting healthy romantic relationship knowledge, attitudes, and behaviors among youth. RESULTS: The search strategy identified 27 studies (26,212 participants). Interventions were found to be effective for improving healthy romantic relationship knowledge in the target population. However, the findings were mixed for intervention effectiveness in changing relationship attitudes/beliefs, and there was limited evidence to support change across behavioral outcomes. CONCLUSIONS: This review highlights the need for future research, including high quality RCTs with longer follow-up periods in a broad range of cultural and ethnic settings, to improve the generalisability of findings. Interventions for adolescents that improve knowledge and behavioral change relating to healthy romantic relationships have the potential to reduce mental and physical health problems during this phase of development.


Asunto(s)
Terapia Conductista , Adolescente , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto
10.
Am J Kidney Dis ; 69(2): 278-286, 2017 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-27940060

RESUMEN

The care of children with end-stage renal disease (ESRD) is highly specialized and often poorly understood by nonpediatric providers and facility/institution administrators. As such, this position paper has been created to offer provider, facility, and institutional guidance regarding the components of care necessary for children receiving dialysis. Key differences between adult and pediatric dialysis units are highlighted. Responsibilities and expectations of the members of the interdisciplinary dialysis team are outlined as they pertain specifically to the care of pediatric dialysis patients. Physical and staffing requirements of the dialysis facility are reviewed, again focusing on unique needs and challenges faced by the pediatric dialysis care team. Among these, vascular access options and proper planning of ESRD care are underscored. Pediatric quality-of-life metrics differ significantly from adult quality variables, and proper tools for assessment must be used. Endorsed by the Council of the American Society of Pediatric Nephrology (ASPN), this position paper serves as a reference tool for the provision of care to pediatric patients with ESRD.


Asunto(s)
Actitud del Personal de Salud , Fallo Renal Crónico/terapia , Nefrología , Pediatría , Adolescente , Niño , Árboles de Decisión , Accesibilidad a los Servicios de Salud , Humanos , Enfermería en Nefrología , Grupo de Atención al Paciente , Calidad de Vida
11.
Nord J Psychiatry ; 71(4): 250-255, 2017 May.
Artículo en Inglés | MEDLINE | ID: mdl-28084134

RESUMEN

BACKGROUND: An increasing need exists for suitable measures to evaluate treatment outcome in adolescents. YP-CORE is a pan-theoretical brief questionnaire developed for this purpose, but it lacks studies in different cultures or languages. AIMS: To explore the acceptability, factor structure, reliability, validity, and sensitivity to change of the Finnish translation of YP-CORE. METHODS: The study was conducted at the Department of Adolescent Psychiatry, Helsinki University Central Hospital. A Finnish translation was prepared by a team of professionals and adolescents. A clinical sample of 104 patients was asked to complete the form together with BDI-21 and BAI, and 92 of them filled the forms again after a 3-month treatment. Analysis included acceptability, confirmatory factor analysis, internal and test-re-test reliability, concurrent validity, influence of gender and age, and criteria for reliable change. RESULTS: YP-CORE was well accepted, and the rate of missing values was low. Internal consistency (α = 0.83-.92) and test-re-test reliability were good (r = 0.69), and the results of CFA supported a one-factor model. YP-CORE showed good concurrent validity against two widely used symptom-specific measures (r = 0.62-0.87). Gender had a moderately strong effect on the scores (d = 0.67), but the effect of age was not as evident. The measure was sensitive to change, showing a larger effect size (d = 0.55) than in the BDI-21 and BAI (d = 0.31-0.50). CONCLUSIONS: The results show that the translation of YP-CORE into Finnish has been successful, the YP-CORE has good psychometric properties, and the measure could be taken into wider use in clinical settings for outcome measurement in adolescents.


Asunto(s)
Comparación Transcultural , Trastornos Mentales/terapia , Evaluación de Resultado en la Atención de Salud/estadística & datos numéricos , Psicometría/estadística & datos numéricos , Encuestas y Cuestionarios , Adolescente , Femenino , Finlandia , Humanos , Masculino , Trastornos Mentales/diagnóstico , Trastornos Mentales/psicología , Reproducibilidad de los Resultados , Autoevaluación (Psicología) , Traducción
12.
J Intellect Disabil ; 21(4): 297-314, 2017 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-27226260

RESUMEN

BACKGROUND: This article explores the literature on social connectedness and music for young people with disability. It then critically examines the level of congruence between the reported literature to date and current rights-based disability studies discourse. METHOD: A critical interpretive synthesis was used to examine 27 articles referencing the use of music for social connectedness. Areas of focus in the review are the nature of connections being fostered in music programs, the use of voice and collaboration. RESULTS: The majority of music programs reported on closed groups. Outdated 'expert' models of working persist. The use of participants' voice in the literature is growing, although there is a lack of collaboration and negative reporting. CONCLUSION: A shift in thinking heralds greater collaboration with participants, although this could be broadened to include decisions on research agendas, planning and evaluation. There is also need for active fostering of broader socio-musical pathways.


Asunto(s)
Discapacidad Intelectual/rehabilitación , Musicoterapia/métodos , Psicoterapia de Grupo/métodos , Apoyo Social , Adolescente , Adulto , Humanos , Adulto Joven
13.
Aust J Rural Health ; 22(1): 40-4, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-24460999

RESUMEN

OBJECTIVE: To examine the availability of and previous engagement with health services among rural young people and compare barriers and facilitators to using face-to-face and online sexual health testing and treatment. DESIGN: Participants were recruited for focus groups and were asked to discuss their access to local sexual health services (what services they used, when, why and how) and then shown a website and asked to provide feedback about online STI testing. SETTING: Community sporting clubs in two small country towns in Victoria. PARTICIPANTS: Seven focus groups with fifty participants, grouped by gender and age, were conducted. MAIN OBJECTIVE MEASURE: Participants views of accessible and acceptable services for STI testing. RESULTS: Three main themes emerged from the analysis: (i) readiness to seek sexual health services; (ii) barriers and facilitators to using the local general practitioner; and (iii) barriers and facilitators to online testing, including 'using the mail during online STI testing' and 'cost of the online service'. In general, the participants described some concerns about accessing sexual health services locally. This was less discussion about availability of services and more about privacy, trust, reliability and using generalist health care providers for sexual health needs. CONCLUSION: Free online testing services address issues of access for rural young people. While barriers external to rural sexual health services may remain, free online STI testing services are acceptable to these rural young people.


Asunto(s)
Población Rural , Enfermedades de Transmisión Sexual/diagnóstico , Adolescente , Adulto , Femenino , Grupos Focales , Accesibilidad a los Servicios de Salud , Humanos , Internet , Masculino , Servicios de Salud Rural/organización & administración , Victoria , Adulto Joven
14.
Cureus ; 16(5): e61271, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38947705

RESUMEN

This literature review aims to explore religiosity, faith, and related beliefs in autistic adolescents. The term religiosity was used interchangeably with various related concepts such as faith, spirituality, and religious beliefs, and a broader, multifaceted approach encompassing the cognitive, subjective, social, cultural, and emotional domains of religiosity is analyzed in this population subgroup. In alignment with the neurodiversity paradigm, this review endeavors to adopt an inclusive lens toward autism spectrum conditions, appreciating the spectrum of cognitive and behavioral differences and highlighting the importance of recognizing strengths and challenges alike, reflecting the nuanced discourse surrounding neurodiversity and autism spectrum conditions. However, terms such as "high-functioning autism" and "disorder" were used where needed to reflect the journals included in the review. A systematic search was conducted by accessing academic search engines such as APA PsycInfo, APA PsycArticles, APA PsycTests, and PubMed. Only peer-reviewed articles written in English and performed on human subjects were included using strict inclusion and exclusion criteria. Several recurring themes were identified from the 13 articles selected after review for relevance and quality. The most important finding was the association of different terminologies and features while exploring "religiosity in autism." Thirty-nine key themes were identified, which were grouped into six major themes. These were religious faith, spirituality, and its expression in autistic adolescents; religious behaviors and practices of autistic adolescents; cognition and religion in autistic teens; social and cultural influences on religiosity in autistic young ones; parents' and carers' influence, perspectives, and experiences about faith and spirituality on autistic adolescents; and perceived benefits of faith to autistic teens: parents and adolescent perspectives. Looking at the concept of religiosity and spirituality as a whole, it can be inferred from the available research included in this review that religiosity (cognitive abilities, behaviors, and experiences) in a subset of autistic adolescents (high-functioning autism) might not be significantly subdued as compared to neurotypical adolescents. However, there is not enough research to conclude the same or the opposite for autistic adolescents in general. When found, reserved religiosity could be attributed to a plethora of factors, and decreased mental ability or mentalization, empathy, or imagination did not seem to be the sole or primary predictors or contributors to religiosity. The role of culture, parents, carers, and religious affiliations was significant and might be a stronger contributor to religiosity and its expression than other previously argued predictors like mentalization. Many autistic teens and their carers regard religiosity and spirituality as essential domains in their and their children's lives, want their children to be given opportunities to be a part of religious groups and affiliations, and look forward to government, religious, and healthcare authorities actively supporting them in this domain. The findings call for policymakers, religious leaders, and stakeholders to devise strategies for inclusion and support for autistic adolescents. The possible role of religion as a resource and coping strategy for these children and their families is worth exploring.

15.
Disabil Rehabil ; : 1-12, 2023 Oct 22.
Artículo en Inglés | MEDLINE | ID: mdl-37865851

RESUMEN

PURPOSE: Life after any amputation can be significantly altered and can have a significant impact on quality of life (QoL). However, most of the evidence base involves older aged amputees, therefore there is a lack of understanding about the impact of amputation on QoL and the factors that predict QoL in younger amputees. The aim of this review is to identify the factors that predict QoL in young amputees. METHODS: MEDLINE, CINAHL, EMBASE, PsycINFO, Web of Science were searched to identify articles that measured QoL in young amputees. Articles were independently assessed by two assessors. Data was extracted from the selected articles and a narrative synthesis performed. RESULTS: 18 articles were included in this review. QoL outcome measures varied between studies. The quality of evidence was generally low. This review identified, gender, age, cause of amputation, level of amputation, phantom pain, ability to use a prosthesis, physical function, depression, anxiety, body image, type of prosthesis as predictors of QoL. CONCLUSION: This review identified modifiable and non-modifiable predictors of QoL in young amputees. Future research needs to focus on exploring the modifiable predictors of QoL as these are the aspects that can be improved to enhance QoL.


Life after any amputation can be significantly altered and can have a significant impact on quality of life (QoL).Gender, age, cause of amputation, level of amputation, phantom pain, ability to use a prosthesis, physical function, depression and anxiety, body image and type of prosthesis were identified as predictors of QoL.The ability to use a prosthesis and access to advanced prosthetic technology are important predictors of QoL as they allow for improved mobility, which in turn increases independence and therefore QoL.

16.
Int J Palliat Nurs ; 29(1): 34-42, 2023 Jan 02.
Artículo en Inglés | MEDLINE | ID: mdl-36692478

RESUMEN

BACKGROUND: The rising prevalence of life-limiting conditions in children and young people warrants an evaluation of paediatric palliative care, hospice services and delivered care. AIM: First, this study aimed to develop a deeper understanding of how extended viewing is experienced by the parents of a deceased child (or young person) with a life-limiting condition, based in Australia. Second, this study aimed to evaluate the quality of bereavement care delivered during the first few days after death. FINDINGS: A total of 17 bereaved parents of 13 children completed an interview. In-depth interviews were audio-recorded, transcribed verbatim and thematically analysed. While the authors acknowledge the complexity and individual nature of grief, four broad themes were identified, namely the importance of the 'physical environment' being conducive to spending time with their child; 'seeing their child'; 'time to say goodbye'; and 'supportive care'. CONCLUSION: The findings of this study reinforce that extended viewing can provide therapeutic benefits for parents, as well as the importance of a skilled palliative care nursing workforce in assisting with grief management.


Asunto(s)
Aflicción , Cuidados Paliativos al Final de la Vida , Padres , Adolescente , Niño , Humanos , Pesar , Hospitales para Enfermos Terminales , Padres/psicología
17.
Res Involv Engagem ; 9(1): 2, 2023 Feb 09.
Artículo en Inglés | MEDLINE | ID: mdl-36759920

RESUMEN

BACKGROUND: Public and patient involvement (PPI) through Young Person's Advisory Groups (YPAG) enables children to provide guidance and insight into research activities. PPI is an important characteristic of research, however, to date, most collaboration has been with adults. Also, few YPAGs have been established within the Irish setting. The ROLO (Randomised cOntrol trial of a LOw glycaemic index diet in pregnancy to prevent macrosomia) YPAG was established in July 2020 to identify the research priorities of a group of healthy Irish children who are part of a longitudinal birth cohort. We aimed to describe this process and the key insights to date. METHODS: The ROLO study is a longitudinal birth cohort which has followed-up mother-child dyads at multiple timepoints over 10 years. Mothers actively involved in the study were contacted by the research team to invite their ROLO child and older sibling to participate in the YPAG. Meetings were conducted virtually between July 2020 and February 2022. Researchers encouraged free expression of views amongst the children regarding their research interests. Meetings were recorded, transcribed verbatim and analysed for themes based on the topics most frequently discussed and considered important to participants. RESULTS: In all, seven ROLO children and six older siblings attended four ROLO YPAG meetings. Participants were aged between nine to fifteen years old. Four key themes were identified; study children viewed their identity as part of a longitudinal birth cohort as positive and unique; study children considered the fitness test and body measurements as fun aspects related to their participation; all children considered the impact and use of social media as an important form of communication; and all participants expressed interest in attaining new health-related information and learning opportunities. Children suggested topics such as mental health, future viruses, organ transplants, cancer, and the effect of technology and chemicals on the body were important for future research. CONCLUSION: The ROLO YPAG offers promising scope for continued collaboration. The themes identified from the meetings contribute to a gap in the literature which will guide future research activities, particularly with children, in view of study design, relevance, and by communication strategies. Trial Details: ISRCTN54392969 registered at www.isrctn.com .


The ROLO pregnancy study took place in the National Maternity Hospital in Dublin Ireland. It started in 2007 and ended in 2011. The researchers recorded what women were eating. They also measured the weight of the baby at birth. Since then, ROLO mothers and their children were invited to come back to the study. Now the children of the study are 9­11 years of age.The researchers invited members of the ROLO study to speak with them. They wanted to know what research was important to them. They set up a group called the ROLO Family Advisory Committee in 2017. This group of parents and researchers meet once a year. The group thought it was important to include children as well. They made a new group called the ROLO Young Person's Advisory Group in 2020. The group has 7 ROLO children and 6 older siblings. The members are aged between 9 and 15-years-old. The children and researchers have met four times so far.The researchers found four key themes. Study children saw their identity as being part of a longitudinal birth cohort as positive and unique. Study children liked the fitness test and body measurements. All children thought that social media was an important form of communication. All children were interested in learning new information on how their bodies worked.Involving this group of children is important. It will make our research more relevant. Other researchers who want to involve children can learn from our experience.

18.
Artículo en Inglés | MEDLINE | ID: mdl-36767509

RESUMEN

There is limited research comparing the presentation of autism in deaf and hearing children and young people. These comparisons are important to facilitate accurate diagnosis, as rates of misdiagnosis and delay in diagnosis amongst deaf children and young people are high. The aim of this study was to compare diagnostic assessment profiles of a UK cohort of autistic deaf and hearing children and young people. The Autism Diagnostic Interview-Revised-Deaf adaptation was completed with the parents of 106 children and young people (deaf children = 65; hearing children = 41). The majority of items explored showed no significant differences between deaf and hearing children and young people. Differences were found in peer relationships, where autistic deaf participants were less likely to respond to the approaches of other children or play imaginatively with peers. These findings need to be taken into consideration by clinicians in the assessment process.


Asunto(s)
Trastorno Autístico , Humanos , Niño , Adolescente , Trastorno Autístico/diagnóstico , Audición , Grupo Paritario , Adaptación Fisiológica
19.
Trials ; 24(1): 220, 2023 Mar 23.
Artículo en Inglés | MEDLINE | ID: mdl-36959662

RESUMEN

There are increasing rates of internalising difficulties, particularly anxiety and depression, being reported in children and young people in England. School-based universal prevention programmes are thought to be one way of helping tackle such difficulties. This paper describes an update to a four-arm cluster randomised controlled trial ( http://www.isrctn.com/ISRCTN16386254 ), investigating the effectiveness of three different interventions when compared to usual provision, in English primary and secondary pupils. Due to the COVID-19 pandemic, the trial was put on hold and subsequently prolonged. Data collection will now run until 2024. The key changes to the trial outlined here include clarification of the inclusion and exclusion criteria, an amended timeline reflecting changes to the recruitment period of the trial due to the COVID-19 pandemic and clarification of the data that will be included in the statistical analysis, since the second wave of the trial was disrupted due to COVID-19.Trial registration ISRCTN Registry ISRCTN16386254. Registered on 30 August 2018.


Asunto(s)
COVID-19 , Atención Plena , Niño , Humanos , Adolescente , Salud Mental , Pandemias/prevención & control , Instituciones Académicas , Ensayos Clínicos Controlados Aleatorios como Asunto
20.
Artículo en Inglés | MEDLINE | ID: mdl-37835160

RESUMEN

There is a high prevalence rate of co-occurring alcohol use and mental health problems in young people. This is associated with adverse outcomes and poses a substantial public health concern. We identified and synthesized evidence on the effectiveness of family-involved interventions in reducing alcohol use and mental health problems in young people aged 12-17. Seven databases were searched from inception to January 2023. Data from 19 articles reporting on 14 trials were pooled through random-effects meta-analysis for each outcome using Review Manager 5.3. Pooled estimates resulted in non-significant findings for alcohol use (SMD -0.60; 95% CI -1.63 to 0.42; p = 0.25; 6 trials; 537 participants), internalizing symptoms (SMD -0.13; 95% CI -0.37 to 0.10; p = 0.27), externalizing symptoms (SMD -0.26; 95% CI -0.66 to 0.15; p = 0.22) and substance use (SMD -0.33; 95% CI -0.72 to 0.06; p = 0.10). In contrast, significant intervention effects were identified for the mechanism of change, family conflict (SMD -0.30; 95% CI -0.51 to -0.09; p = 0.005). Consequently, addressing family functioning may not be sufficient in reducing co-occurring alcohol use and mental health problems. Non-significant intervention effects could be due to a lack of content addressing the relationship between alcohol use and mental health problems. Future intervention development could explore whether to incorporate such content and how best to involve the family.


Asunto(s)
Salud Mental , Trastornos Relacionados con Sustancias , Humanos , Adolescente , Trastornos Relacionados con Sustancias/epidemiología , Consumo de Bebidas Alcohólicas/epidemiología , Prevalencia
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