Young people and developmentally appropriate transitional care in rheumatology

2013 ◽  
pp. 11-21
Author(s):  
Janet E. McDonagh ◽  
Helena Gleeson
Keyword(s):  
Young People ◽  
Transitional Care ◽  
Developmentally Appropriate ◽  
Adolescent And Young Adult ◽  
Adolescent Medicine ◽  
Psychosocial Needs ◽  
Long Term Conditions ◽  
Health And Illness ◽  
Youth Friendly

Young people are distinctly different from children and adults and as such require developmentally appropriate, youth-friendly rheumatology services to meet their medical and psychosocial needs. Adolescent development continues into the third decade of life and both influences and is affected by, health and illness (including) during this time. Effective transitional care in rheumatology is underpinned by the core principles of adolescent medicine, self-management of long-term conditions, and a developmentally appropriate, youth-friendly rheumatology service including staff trained in adolescent and young adult (AYA) health.

Young people and transitional care in rheumatology

2018 ◽  
Author(s):  
Janet E. McDonagh ◽  
Helena Gleeson
Keyword(s):  
Young People ◽  
Adolescent Development ◽  
Transitional Care ◽  
Developmentally Appropriate ◽  
Adolescent Medicine ◽  
Psychosocial Needs ◽  
Long Term Conditions ◽  
Health And Illness ◽  
Youth Friendly

Young people are distinctly different from children and adults and as such require developmentally appropriate, youth-friendly rheumatology services to meet their medical and psychosocial needs. Adolescent development continues into the third decade of life and both influences and is affected by, health and illness (including rheumatic disease) during this time. Effective transitional care in rheumatology is underpinned by the core principles of adolescent medicine, self-management of long-term conditions, and a youth-friendly rheumatology service including staff trained in adolescent health.

Young people and transitional care in rheumatology

2013 ◽  
Author(s):  
Janet E. McDonagh ◽  
Helena Gleeson
Keyword(s):  
Young People ◽  
Adolescent Development ◽  
Transitional Care ◽  
Developmentally Appropriate ◽  
Adolescent Medicine ◽  
Psychosocial Needs ◽  
Long Term Conditions ◽  
Health And Illness ◽  
Youth Friendly

Young people are distinctly different from children and adults and as such require developmentally appropriate, youth-friendly rheumatology services to meet their medical and psychosocial needs. Adolescent development continues into the third decade of life and both influences and is affected by, health and illness (including rheumatic disease) during this time. Effective transitional care in rheumatology is underpinned by the core principles of adolescent medicine, self-management of long-term conditions, and a youth-friendly rheumatology service including staff trained in adolescent health.

Young people and transitional care in rheumatology

2016 ◽  
Author(s):  
Janet E. McDonagh ◽  
Helena Gleeson
Keyword(s):  
Young People ◽  
Adolescent Development ◽  
Transitional Care ◽  
Developmentally Appropriate ◽  
Adolescent Medicine ◽  
Psychosocial Needs ◽  
Long Term Conditions ◽  
Health And Illness ◽  
Youth Friendly

Young people are distinctly different from children and adults and as such require developmentally appropriate, youth-friendly rheumatology services to meet their medical and psychosocial needs. Adolescent development continues into the third decade of life and both influences and is affected by, health and illness (including rheumatic disease) during this time. Effective transitional care in rheumatology is underpinned by the core principles of adolescent medicine, self-management of long-term conditions, and a youth-friendly rheumatology service including staff trained in adolescent health.

scholarly journals ‘A confident parent breeds a confident child’: Understanding the experience and needs of parents whose children will transition from paediatric to adult care

2020 ◽  
pp. 136749352093642
Author(s):  
Karen L Shaw ◽  
Lydia Baldwin ◽  
Gemma Heath
Keyword(s):  
Young People ◽  
Interpretative Phenomenological Analysis ◽  
Transitional Care ◽  
Well Being ◽  
Major Theme ◽  
Adult Care ◽  
Long Term Conditions ◽  
Protective Strategies ◽  
Midlife Adults

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child’s transition to adult services, to identify parents’ needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants ( n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care.

A national guideline for youth-friendly health services developed by chronically ill young people and health care professionals – a Delphi study

2020 ◽  
Vol 0 (0) ◽  
Author(s):  
Ena Lindhart Thomsen ◽  
Pernille Grarup Hertz ◽  
Charlotte Blix ◽  
Kirsten A. Boisen
Keyword(s):  
Health Care ◽  
Young People ◽  
Health Services ◽  
Health Care Professionals ◽  
Delphi Study ◽  
Transitional Care ◽  
Chronically Ill ◽  
National Guideline ◽  
Adolescent Medicine ◽  
Youth Friendly

AbstractObjectivesSignificant variation in cultural and socio-economic factors across different countries means that modification of existing guidelines for youth-friendly health services are needed. Furthermore, including the views and perspectives of young people in developing health services add significant value. The aim of this study was to develop a national guideline for youth-friendly health services using the Delphi method.MethodsWe invited young people with chronic conditions, managers of paediatric, psychiatric and relevant adult departments and health care professionals with experience and interest in adolescent medicine to participate. The initial list of elements was constructed based on international guidelines and systematic reviews. The study consisted of three electronic questionnaire rounds assessing relevance, importance and whether the elements were essential/very important, respectively. We used 70% agreement as cut-off.ResultsMore than 70% of participants agreed that only one element was essential: ‘Young people should be actively involved in decisions about their treatment and encouraged and supported to ask questions about their illness and treatment’. Additionally, 18 elements reached more than 70% agreement, when the ‘essential’ was combined with the ‘very important’ category. We grouped these 19 elements into five themes: 1) staff competences and workflow, 2) developmentally appropriate communication, 3) focus on youth life, including mental health 4) youth participation and shared decisions, and 5) autonomy and transitional care.ConclusionThis guideline for a youth-friendly health care system may serve as inspiration for concrete changes, both locally and internationally, as it was developed together by young people, staff, and management.

Getting health services right for 16–25 year-olds

2020 ◽  
Vol 106 (1) ◽  
pp. 9-13
Author(s):  
Emma Rigby ◽  
Ann Hagell ◽  
Marion Davis ◽  
Helena Gleeson ◽  
Gabrielle Mathews ◽  
...  
Keyword(s):  
Young People ◽  
Health Services ◽  
Early Adulthood ◽  
Developmentally Appropriate ◽  
Young Person ◽  
Children And Young People ◽  
Adult Services ◽  
Age Range ◽  
Youth Friendly

The 2019 NHS England Long Term Plan set out the ambition to work across the 0–25 age range to support children and young people as they make the transition to early adulthood. Within this broad age bracket, how do we ensure we get health services right for 16–25 year-olds including the transfer to adult services? In this paper, we explore the evidence supporting youth-friendly and developmentally appropriate healthcare approaches and what these mean in practice for young people and healthcare professionals. Examples from primary and secondary care, as well as the perspectives of a young person, illustrate the challenges and solutions.

scholarly journals Falling through the gaps: exploring the role of integrated commissioning in improving transition from children’s to adults' services for young people with long-term health conditions in England

2018 ◽  
Vol 23 (2) ◽  
pp. 107-115 ◽  
Author(s):  
Gregory Maniatopoulos ◽  
Ann Le Couteur ◽  
Luke Vale ◽  
Allan Colver
Keyword(s):  
Young People ◽  
Transitional Care ◽  
Transition Services ◽  
Health Conditions ◽  
Local Policy ◽  
Long Term Conditions ◽  
Different Cultures ◽  
Depth Interviews

Objectives To explore the role of integrated commissioning in improving the transition of young people with long-term conditions from child to adult services. We aimed to identify organizational and policy gaps around transition services and provide recommendations for integrated commissioning practice. Methods Semi-structured in-depth interviews were conducted with two groups of participants: (1) twenty-four stakeholders involved in the commissioning and provision of transition services for young people with long-term conditions in two regions in England; (2) five professionals with national roles in relation to planning for transition. Transcripts were interrogated using thematic analysis. Results There is little evidence of integrated commissioning for transitional care for young people with long-term conditions. Commissioners perceive there to be a lack of national and local policy to guide integrated commissioning for transitional care; and limited resources for transition. Furthermore, commissioning organizations responsible for transition have different cultures, funding arrangements and related practices which make inter- and intra-agency co-ordination and cross-boundary continuity of care difficult to achieve. Conclusions Integrated commissioning may be an effective way to achieve successful transitional care for young people with long-term health conditions. However, this innovative relational approach to commissioning requires a national steer together with recognition of common values and joint ownership between relevant stakeholders.

scholarly journals M.I.C.E—Mental Health Intervention for Children with Epilepsy: a randomised controlled, multi-centre clinical trial evaluating the clinical and cost-effectiveness of MATCH-ADTC in addition to usual care compared to usual care alone for children and young people with common mental health disorders and epilepsy—study protocol

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Sophie D. Bennett ◽  
◽  
J. Helen Cross ◽  
Anna E. Coughtrey ◽  
Isobel Heyman ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Usual Care ◽  
Psychological Intervention ◽  
Mental Health Disorders ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Health Disorders ◽  
Randomised Controlled

Abstract Background Mental health disorders in the context of long-term conditions in children and young people are currently overlooked and undertreated. Evidence-based psychological treatments for common childhood mental health disorders (anxiety, depression and disruptive behaviour disorders) have not been systematically evaluated in young people with epilepsy despite their high prevalence in this population. The aim of this multi-site randomised controlled trial is to determine the clinical and cost-effectiveness of adding a modular psychological intervention to usual care for the mental health disorders in comparison to assessment-enhanced usual care alone. Methods In total, 334 participants aged 3–18 years attending epilepsy services will be screened for mental health disorders with the Strengths and Difficulties Questionnaire (SDQ) and the diagnostic Development and Wellbeing Assessment (DAWBA). Those identified as having a mental health disorder and consenting to the trial will be randomised to either receive up to 22 sessions of the modular psychological intervention (MATCH-ADTC) delivered over the telephone over 6 months by non-mental health professionals in addition to usual care or to assessment-enhanced usual care alone. Outcomes will be measured at baseline, 6 months and 12 months post-randomisation. It is hypothesised that MATCH-ADTC plus usual care will be superior to assessment-enhanced usual care in improving emotional and behavioural symptoms. The primary outcome is the SDQ reported by parents at 6 months. Secondary outcomes include parent-reported mental health measures such as the Revised Children’s Anxiety and Depression Scale, quality of life measures such as the Paediatric Quality of Life Inventory and physical health measures such as the Hague Seizure Severity Scale. Outcome assessors will be blinded to group assignment. Qualitative process evaluations and a health economic evaluation will also be completed. Discussion This trial aims to determine whether a systematic and integrated approach to the identification and treatment of mental health disorders in children and young people with epilepsy is clinically and cost-effective. The findings will contribute to policies and practice with regard to addressing mental health needs in children and young people with other long-term conditions. Trial registration ISRCTN ISRCTN57823197. Registered on 25 February 2019.

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