Peer-based Social Support for Young-People with Juvenile Arthritis: Views of Young People, Parents/Carers and Healthcare Professionals within the UK

BackgroundThere is little qualitative research in the UK focussing on adolescents’ experience of their healthcare providers, and inflammatory skin conditions are a common heath problem in adolescence.AimTo explore the experiences of adolescents with eczema and psoriasis with healthcare professionals, and to distil the participants’ key messages for their healthcare providers.DesignThis is a secondary thematic analysis of interviews with adolescents with eczema or psoriasis.ParticipantsThere were a total of 41 text transcripts of interviews with young people with eczema or psoriasis who had given permission for secondary analysis; 23 of the participants had eczema, and 18 psoriasis. Participants were living in the UK at time of interview, and aged 15–24 years old.ResultsWe have distilled the following key messages from young people with eczema and psoriasis for healthcare providers: (1) address the emotional impact; (2) give more information, with the subtheme and (3) appreciate patient research. We identified the following eczema-specific themes: (ECZ-4) ‘It’s not taken seriously’; (ECZ-5) offer choice in treatment and (ECZ-6) lack of structure/conflicting advice. Two psoriasis-specific themes were identified: (PSO-4) feeling dehumanised/treat me as a person; and (PSO-5) think about how treatments will affect daily life.ConclusionThis qualitative data analysis highlights the need for greater recognition of the emotional impact of skin disease in adolescence, and for more comprehensive provision of information about the conditions. We call for greater sensitivity and flexibility in our approach to adolescents with skin disease, with important implications for healthcare delivery to this group.

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P09 A survey of the NPPG group concerning medication administration problems among children and young people aged 0 to 18 years old

Archives of Disease in Childhood ◽

10.1136/archdischild-2020-nppg.18 ◽

2020 ◽

Vol 105 (9) ◽

pp. e10.2-e11

Author(s):

Dania Dahmash ◽

Chi Huynh ◽

Daniel Kirby ◽

David Terry

Keyword(s):

Young People ◽

Healthcare Professionals ◽

Medication Use ◽

Medication Administration ◽

Main Concern ◽

Age Group ◽

Further Training ◽

Children And Young People ◽

Paediatric Patients ◽

The Uk

AimTo identify issues encountered by pharmacy healthcare professionals with regards to problems that they have experienced, complaints received, queries and feedback by the patients or parents or caregivers in terms of medication administration for children and young people aged 0 to18 years old.MethodAn online survey using the Online Surveys tool was devised to obtain healthcare professionals’ perspective regarding medication administration problems encountered by parents, caregivers or paediatric patients when administering or taking their medication at home. The survey was sent to the members of the Neonatal and Paediatric Pharmacists Group (NPPG), who represent different geographical areas within the UK and further afield. Informed consent was obtained from participants. This study was reviewed and approved by the Life and Health Sciences Ethics Committee, Aston University.Results37 pharmacists and 1 technician completed the survey. The majority of the respondents 23/38 were currently practicing in England, with 6/38 respondents being registered pharmacists outside the UK, 1/38 was practicing in Northern Ireland, 3/38 within Scotland and 4/38 were practicing in Wales. 71.1% of the respondents strongly agreed that parents or caregivers require further training when it comes to medication delivery to their children. In addition, when asked about their concerns regarding prescribed medication to children aged between 0 to18 years old, respondents expressed a different level of concern regarding each age group. Regarding neonates, the main concern was the suitability of the prescribed formulation and the ability of the parents to accurately measure and administered a low dose volume. In contrast, for children aged between 28 days to 12 years, the common concerns were associated with palatability, which will further reflect upon child compliance and the parent or caregiver’s ability to understand medication instructions and administration. Finally, for older aged children, adherence was a common concern. Furthermore, liquid formulations (suspensions (60.5%), solutions (55.3%) and injections (44.7%)) were predominantly used among children aged 0 to 18 years old within both in and outpatients setting. Overall, the majority of the respondents expressed that counselling time between the patient and pharmacists and the need to provide further training and educational material to parents and young people is an important issue to improve understating in regards medication use.ConclusionThe findings suggest that medication administration problems occur frequently among paediatric patients, and the nature of these problems varies among each age group. Medication training for both parents and young people could be a key factor to help reduce this problem. Future research is needed to investigate and gain insight into personal experiences with medication use and administration from a parent and/or young person’s perspective. This will help to highlight the current problem in the UK and further develop potential interventions to reduce medication administration errors by parents of children aged 0 to 16 years old and by young people up to the age of 18 years.

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‘It’s a hard conversation to have’. Healthcare professionals’ views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2017-001369 ◽

2017 ◽

Vol 9 (1) ◽

pp. e9-e9

Author(s):

Andy Hiscock ◽

Stephen Barclay

Keyword(s):

Young People ◽

End Of Life ◽

End Of Life Care ◽

Healthcare Professionals ◽

Neuromuscular Diseases ◽

Individual Case ◽

Life Care ◽

Care Plans ◽

Advance Care ◽

The Uk

ObjectiveLife-limiting neuromuscular disease, such as some of the muscular dystrophies, are often diagnosed in early childhood: when death comes, commonly in the second or third decade of life, patients rarely have advance care plans in place or documented end-of-life care preferences. There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. The aim of this study was to investigate the views and experiences of healthcare professionals concerning having discussions about advance care plans and end-of-life care with teenagers and young adult patients affected by life-limiting neuromuscular diseases.MethodsSemistructured interviews with a maximum variety sample of nine professionals involved in the care of young people with life-limiting neuromuscular diseases in one region of the UK.ResultsWhile recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.ConclusionsCommunity-based professionals with well-established relationships with patients and families may be best placed to take the lead and coordinate discussions, but individual case-by-case preferences need to be carefully considered.

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Young People�s, Parents�, and Professionals� Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study (Preprint)

10.2196/preprints.9179 ◽

2017 ◽

Author(s):

Jennifer M Waite-Jones ◽

Rabiya Majeed-Ariss ◽

Joanna Smith ◽

Simon R Stones ◽

Vanessa Van Rooyen ◽

...

Keyword(s):

Social Support ◽

Young People ◽

Health Care Professionals ◽

Mobile Apps ◽

Developmentally Appropriate ◽

Mobile App ◽

Juvenile Arthritis ◽

Mobile Technologies ◽

Self Management ◽

Framework Approach

BACKGROUND There is growing evidence that supporting self-management of Juvenile Arthritis can benefit both patients and professionals. Young people with Juvenile Arthritis and their healthy peers increasingly use mobile technologies to access information and support in day-to-day life. Therefore, a user-led, rigorously developed and evaluated mobile app could be valuable for facilitating young people’s self-management of Juvenile Arthritis. OBJECTIVE The objective of this study was to seek the views of young people with Juvenile Arthritis, their parents or carers, and health care professionals (HCPs) as to what should be included in a mobile app to facilitate young people’s self-management of chronic Juvenile Arthritis. METHODS A qualitative approach was adopted with a purposeful sample of 9 young people aged 10-18 years with Juvenile Arthritis, 8 parents or carers, and 8 HCPs involved in their care. Data were gathered through semi-structured focus group and individual interviews with young people and their parents or carers and HCPs. Interview discussion was facilitated through demonstration of four existing health apps to explore participants’ views on strengths and limitations of these, barriers and facilitators to mobile app use, preferred designs, functionality, levels of interaction, and data sharing arrangements. Data were analyzed using the framework approach. RESULTS Analysis revealed three interlinked, overarching themes: (1) purpose, (2) components and content, and (3) social support. Despite some differences in emphasis on essential content, general agreement was found between young people with Juvenile Arthritis their parents or carers, and professionals that a mobile app to aid self-management would be useful. Underpinning the themes was a prerequisite that young people are enabled to feel a sense of ownership and control of the app, and that it be an interactive, engaging resource that offers developmentally appropriate information and reminders, as well as enabling them to monitor their symptoms and access social support. CONCLUSIONS Findings justify and pave the way for a future feasibility study into the production and preliminary testing of such an app. This would consider issues such as compatibility with existing technologies, costs, age, and cross-gender appeal as well as resource implications.

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Different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis: the SIRJIA mixed-methods feasibility study

Health Technology Assessment ◽

10.3310/hta24360 ◽

2020 ◽

Vol 24 (36) ◽

pp. 1-152

Author(s):

Ashley P Jones ◽

Dannii Clayton ◽

Gloria Nkhoma ◽

Frances C Sherratt ◽

Matthew Peak ◽

...

Keyword(s):

Juvenile Idiopathic Arthritis ◽

Young People ◽

Disease Activity ◽

Health Care Professionals ◽

Disease Activity Score ◽

Controlled Trial ◽

Juvenile Arthritis ◽

Children And Young People ◽

Randomised Controlled ◽

The Uk

Background In the UK, juvenile idiopathic arthritis is the most common inflammatory disorder in childhood, affecting 10 : 100,000 children and young people aged < 16 years each year, with a population prevalence of around 1 : 1000. Corticosteroids are commonly used to treat juvenile idiopathic arthritis; however, there is currently a lack of consensus as to which corticosteroid induction regimen should be used with various disease subtypes and severities of juvenile idiopathic arthritis. Objective The main study objective was to determine the feasibility of conducting a randomised controlled trial to compare the different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis. Design This was a mixed-methods study. Work packages included a literature review; qualitative interviews with children and young people with juvenile idiopathic arthritis and their families; a questionnaire survey and screening log to establish current UK practice; a consensus meeting with health-care professionals, children and young people with juvenile idiopathic arthritis, and their families to establish the primary outcome; a feasibility study to pilot data capture and to collect data for future sample size calculations; and a final consensus meeting to establish the final protocol. Setting The setting was rheumatology clinics across the UK. Participants Children, young people and their families who attended clinics and health-care professionals took part in this mixed-methods study. Interventions This study observed methods of prescribing corticosteroids across the UK. Main outcome measures The main study outcomes were the acceptability of a future trial for children, young people, their families and health-care professionals, and the feasibility of delivering such a trial. Results Qualitative interviews identified differences in the views of children, young people and their families on a randomised controlled trial and potential barriers to recruitment. A total of 297 participants were screened from 13 centres in just less than 6 months. In practice, all routes of corticosteroid administration were used, and in all subtypes of juvenile idiopathic arthritis. Intra-articular corticosteroid injection was the most common treatment. The questionnaire surveys showed the varying clinical practice across the UK, but established intra-articular corticosteroids as the treatment control for a future trial. The primary outcome of choice for children, young people, their families and health-care professionals was the Juvenile Arthritis Disease Activity Score, 71-joint count. However, results from the feasibility study showed that, owing to missing blood test data, the clinical Juvenile Arthritis Disease Activity Score should be used. The Juvenile Arthritis Disease Activity Score, 71-joint count, and the clinical Juvenile Arthritis Disease Activity Score are composite disease activity scoring systems for juvenile arthritis. Two final trial protocols were established for a future randomised controlled trial. Limitations Fewer clinics were included in this feasibility study than originally planned, limiting the ability to draw strong conclusions about these units to take part in future research. Conclusions A definitive randomised controlled trial is likely to be feasible based on the findings from this study; however, important recommendations should be taken into account when planning such a trial. Future work This mixed-methods study has laid down the foundations to develop the evidence base in this area and conducting a randomised control trial to compare different corticosteroid induction regimens in children and young people with juvenile idiopathic arthritis is likely to be feasible. Study registration Current Controlled Trials ISRCTN16649996. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 36. See the NIHR Journals Library website for further project information.

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Pathways to Problems: Hazardous Use of Tobacco, Alcohol and Other Drugs by Young People in the UK and its Implications for Policy

PsycEXTRA Dataset ◽

10.1037/e617612007-001 ◽

2006 ◽

Keyword(s):

Young People ◽

The Uk ◽

Alcohol And Other Drugs ◽

Hazardous Use

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Report1: Impact of Covid-19 on young people aged 13-24 in the UK- preliminary findings

10.31234/osf.io/uq4rn ◽

2020 ◽

Cited By ~ 1

Author(s):

Liat Levita ◽

Jilly Gibson Miller ◽

Todd K. Hartman ◽

Jamie Murphy ◽

Mark Shevlin ◽

...

Keyword(s):

Mental Health ◽

Young People ◽

Emotional Regulation ◽

Health Anxiety ◽

Self Control ◽

Social Risk ◽

Need For Support ◽

The Uk ◽

Social Recovery ◽

The Impact

COVID-19 has led to an unprecedented disruption of normal social relationships and activities, which are so important during the teen years and young adulthood, and to education and economic activity worldwide. The impact of this on young people’s mental health and future prospects may affect their need for support and services, and the speed of the nation’s social recovery afterwards. This study focused on the unique challenges facing young people at different points during adolescent development, which spans from the onset of puberty until the mid-twenties. Although this is an immensely challenging time and there is a potential risk for long term trauma, adolescence can be a period of opportunity, where the teenagers’ brain enjoys greater capacity for change. Hence, the focus on young people is key for designing age-specific interventions and public policies, which can offer new strategies for instilling resilience, emotional regulation, and self-control. In fact, adolescents might be assisted to not only cope, but excel, in spite of the challenges imposed by this pandemic. Our work will feed into the larger societal response that utilizes the discoveries about adolescence in the way we raise, teach, and treat young people during this time of crisis. Wave 1 data has already been collected from 2,002 young people aged 13-24, measuring their mental health (anxiety, depression, trauma), family functioning, social networks, and resilience, and social risk-taking at the time of the pandemic. Here we present a preliminary report of our findings, (Report 1). Data collected 21/4/20- 29/4/20 - a month after the lockdown started).

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Brief Behavioural Activation (Brief BA) for Adolescent Depression: A Pilot Study

Behavioural and Cognitive Psychotherapy ◽

10.1017/s1352465817000443 ◽

2017 ◽

Vol 46 (2) ◽

pp. 182-194 ◽

Cited By ~ 8

Author(s):

Laura Pass ◽

Carl W. Lejuez ◽

Shirley Reynolds

Keyword(s):

Mental Health ◽

Pilot Study ◽

Young People ◽

Adolescent Depression ◽

Psychological Intervention ◽

Clinical Effectiveness ◽

Evidence Based ◽

Behavioural Activation ◽

Evidence Based Treatments ◽

The Uk

Background: Depression in adolescence is a common and serious mental health problem. In the UK, access to evidence-based psychological treatments is limited, and training and employing therapists to deliver these is expensive. Brief behavioural activation for the treatment of depression (BATD) has great potential for use with adolescents and to be delivered by a range of healthcare professionals, but there is limited empirical investigation with this group. Aims: To adapt BATD for depressed adolescents (Brief BA) and conduct a pilot study to assess feasibility, acceptability and clinical effectiveness. Method: Twenty depressed adolescents referred to the local NHS Child and Adolescent Mental Health service (CAMHs) were offered eight sessions of Brief BA followed by a review around one month later. Self- and parent-reported routine outcome measures (ROMs) were collected at every session. Results: Nineteen of the 20 young people fully engaged with the treatment and all reported finding some aspect of Brief BA helpful. Thirteen (65%) required no further psychological intervention following Brief BA, and both young people and parents reported high levels of acceptability and satisfaction with the approach. The pre–post effect size of Brief BA treatment was large. Conclusions: Brief BA is a promising innovation in the treatment of adolescent depression. This approach requires further evaluation to establish effectiveness and cost effectiveness compared with existing evidence-based treatments for adolescent depression. Other questions concern the effectiveness of delivery in other settings and when delivered by a range of professionals.

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Survey of young people in one region of the UK on accessing COVID-19 information (SOCIAL)

BMJ Paediatrics Open ◽

10.1136/bmjpo-2020-000942 ◽

2021 ◽

Vol 5 (1) ◽

pp. e000942

Author(s):

Oliver G P Lawton ◽

Sarah A Lawton ◽

Lisa Dikomitis ◽

Joanne Protheroe ◽

Joanne Smith ◽

...

Keyword(s):

Social Media ◽

Young People ◽

Significant Role ◽

Online Survey ◽

Descriptive Statistics ◽

Sources Of Information ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Education Gaps ◽

The Uk

COVID-19 has significantly impacted young people’s lives yet little is known about the COVID-19 related sources of information they access. We performed a cross-sectional survey of pupils (11–16 years) in North Staffordshire, UK. 408 (23%) pupils responded to an online survey emailed to them by their school. Descriptive statistics were used to summarise the data. Social media, accessed by 68%, played a significant role in the provision of information, despite it not being considered trustworthy. 89% felt that COVID-19 had negatively affected their education. Gaps in the provision of information on COVID-19 have been identified.

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She “didn’t see my weight; she saw me, a mom who needed help breastfeeding”: Perceptions of perinatal weight stigma and its relationship with breastfeeding experiences

Journal of Health Psychology ◽

10.1177/1359105320988325 ◽

2021 ◽

pp. 135910532098832

Author(s):

Rachel Dieterich ◽

Judy Chang ◽

Cynthia Danford ◽

Paul W Scott ◽

Caroline Wend ◽

...

Keyword(s):

Social Support ◽

Healthcare Professionals ◽

Body Image Dissatisfaction ◽

Descriptive Study ◽

Self Esteem ◽

Weight Stigma ◽

Depression And Anxiety ◽

Self Confidence ◽

Qualitative Descriptive ◽

Suboptimal Breastfeeding

Weight stigmatization is related to emotional and psychological distress including low self-esteem, body image dissatisfaction, depression, and anxiety; all linked with suboptimal breastfeeding outcomes. This qualitative descriptive study explored postpartum individuals’ recalled experiences of weight stigma during interactions with perinatal healthcare professionals and its perceived influence on their breastfeeding experiences. Semi-structured phone interviews were conducted with (n= 18) participants. Three themes emerged: (1) “Size Doesn’t Matter: They Looked Beyond the Scale,” (2) “My Self-Confidence and Desire to Breastfeed is More Important than Weight,” and (3) “I Was on My Own”— Limited Social Support not Weight Stigma Influenced Breastfeeding.

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