scholarly journals 135. Shared Decision Making: Empowering Young People with Juvenile Idiopathetic Arthritis to Take Control

Rheumatology ◽  
2014 ◽  
Vol 53 (suppl_1) ◽  
pp. i110-i111
Author(s):  
Ruth Wyllie ◽  
Lucy Craig ◽  
Sharmila Jandial
Keyword(s):  
Decision Making ◽  
Young People ◽  
Shared Decision Making ◽  
Shared Decision

scholarly journals A feasibility trial of Power Up: A smartphone app to support patient activation and shared decision making for mental health in young people (Preprint)

2018 ◽  
Author(s):  
Julian Edbrooke-Childs ◽  
Chloe Edridge ◽  
Phoebe Averill ◽  
Louise Delane ◽  
Michael P Craven ◽  
...  
Keyword(s):  
Mental Health ◽  
Decision Making ◽  
Young People ◽  
Shared Decision Making ◽  
Randomized Control Trial ◽  
Patient Activation ◽  
Shared Decision ◽  
Cluster Randomized Control Trial ◽  
Randomized Control ◽  
Cluster Randomized

BACKGROUND Digital tools have the potential to support patient activation and shared decision making in the face of increasing levels of mental health problems in young people. There is a need for feasibility trials of digital interventions to determine the usage and acceptability of interventions. In addition, there is a need to determine the ability to recruit and retain research participants to plan rigorous effectiveness trials and therefore, develop evidence-based recommendations for practice. OBJECTIVE To determine the feasibility of undertaking a cluster randomized control trial to test the effectiveness of a smartphone app, Power Up, co-designed with young people to support patient activation and shared decision making for mental health. METHODS Overall, 270 young people were screened for participation and 53% (N = 142) were recruited and completed baseline measures across eight specialist child mental health services (n = 62, mean (SD) age = 14.66 (1.99) years, 52% female) and two mainstream secondary schools (n = 80; mean (SD) age = 16.88 (0.68) years, 46% female). Young people received Power Up in addition to management as usual or received management as usual only. Post-trial interviews were conducted with 11 young people from the intervention arms (specialist services n = 6; schools n = 5). RESULTS Usage data showed that there were an estimated 50 (out of 64) users of Power Up in the intervention arms. Findings from the interviews indicated that young people found Power Up to be acceptable. Young people reported: 1) their motivation for use of Power Up, 2) the impact of use, and 3) barriers to use. Out of the 142 recruited participants, 45% (64/142) completed follow up measures, and the approaches to increase retention agreed by the steering group are discussed. CONCLUSIONS The findings of the present research indicate that the app is acceptable and it is feasible to examine the effectiveness of Power Up in a prospective cluster randomized control trial. CLINICALTRIAL ISRCTN: ISRCTN77194423, ClinicalTrials.gov NCT02552797

Can the current hypodontia care pathway promote shared decision-making?

2019 ◽  
Vol 46 (2) ◽  
pp. 126-136 ◽  
Author(s):  
Sophy Barber ◽  
Sue Pavitt ◽  
David Meads ◽  
Balvinder Khambay ◽  
Hilary Bekker
Keyword(s):  
Decision Making ◽  
Young People ◽  
Shared Decision Making ◽  
Information Exchange ◽  
Care Pathway ◽  
Information Provision ◽  
Alternative Methods ◽  
Teaching Hospitals ◽  
Shared Decision ◽  
Cross Sectional

Objective: To determine the extent to which the current care pathway in hypodontia promotes shared decision-making (SDM). Design: Exploratory cross-sectional study using qualitative methods. Setting: Orthodontic department of two NHS teaching hospitals in Yorkshire. Participants: Young people aged 12–16 years with hypodontia of any severity and at any stage of treatment, and their parents and guardians. Methods: (1) Observation and audio-recording of interdisciplinary consultation in hypodontia clinics (n = 5) without any researcher interference; (2) short, structured interviews with young people with hypodontia (n = 8) and their parent (n = 8) using a topic guide to explore themes around decision-making. Audio-recordings were transcribed and analysed using a thematic framework. Results: Consultations were used as an opportunity for interdisciplinary discussion, information provision and treatment planning. Evidence of good communication was observed but patient engagement was low. The decision to be made was usually stated and treatment options discussed, but time constraints limited the scope for adequate information exchange and assessment of understanding. No methods were used to establish patient and family preferences or values. Interviews suggested parents expect the dental team to make decisions and young people rely on parental advocacy. Despite little evidence of SDM, participants reported satisfaction with their treatment. Conclusions: The current care pathway for hypodontia does not support clinicians in the steps of SDM. Recommendations for improving SDM processes include support to identify preference-based decisions, greater access to comprehensive and accessible patient information to enable preparation for consultation, alternative methods for effective communication of complex information and use of preference elicitation tools to aid value-driven decision-making.

scholarly journals Treatment Choice in Adolescents With Cleft Lip and/or Palate: The Importance of Shared Decision-Making

2019 ◽  
Vol 56 (9) ◽  
pp. 1220-1229
Author(s):  
Francesca Wogden ◽  
Alyson Norman ◽  
Louise Dibben
Keyword(s):  
Decision Making ◽  
Young People ◽  
Shared Decision Making ◽  
Cleft Lip ◽  
Well Being ◽  
Medical Decision ◽  
Shared Decision ◽  
Pediatric Dentist ◽  
Semistructured Interviews ◽  
Inductive Thematic Analysis

Objective: Limited research has studied the involvement of children in medical decision-making. The aim of the study was to understand the involvement of adolescents with cleft lip and/or palate (CL/P) in decisions about elective surgeries and treatments. Design: Parents and professionals completed mixed-methods questionnaires about the degree to which children had been involved in choices about elective treatments. Data were analyzed using content analysis. Young people aged 12 to 25 years were asked to take part in semistructured interviews. The data were analyzed using inductive thematic analysis. Setting: Questionnaire data collection took place online, and interview data were collected via messenger or telephone-based interviews. Participants: The study employed 30 participants; 11 young people (3 male, 8 female), 17 parents (13 mothers, 4 fathers), and 5 professionals (2 surgeons, 2 speech and language therapists, and 1 pediatric dentist). Results: Five main themes were identified. These reflected participants feeling that with increasing age should come increased involvement in decision-making and that it was important for adolescents to “have a voice” during decision-making. Parents, peers, and health professionals were identified as influencing decisions. Most adolescents reported overall satisfaction with their involvement in decision-making but sometimes felt “left in the dark” by professionals or under pressure from parents. A desire to improve speech and/or appearance was as an area where adolescents wanted to be more involved in decision-making. Conclusions: Shared decision-making is an important factor for psychological well-being by promoting autonomy and self-esteem among adolescents with CL/P.

scholarly journals A Feasibility Trial of Power Up: Smartphone App to Support Patient Activation and Shared Decision Making for Mental Health in Young People

10.2196/11677 ◽  
2019 ◽  
Vol 7 (6) ◽  
pp. e11677 ◽  
Author(s):  
Julian Edbrooke-Childs ◽  
Chloe Edridge ◽  
Phoebe Averill ◽  
Louise Delane ◽  
Chris Hollis ◽  
...  
Keyword(s):  
Mental Health ◽  
Decision Making ◽  
Young People ◽  
Shared Decision Making ◽  
Controlled Trial ◽  
Patient Activation ◽  
Smartphone App ◽  
Shared Decision ◽  
Randomized Controlled ◽  
Cluster Randomized

Background Digital tools have the potential to support patient activation and shared decision making in the face of increasing levels of mental health problems in young people. There is a need for feasibility trials of digital interventions to determine the usage and acceptability of interventions. In addition, there is a need to determine the ability to recruit and retain research participants to plan rigorous effectiveness trials and, therefore, develop evidence-based recommendations for practice. Objective This study aimed to determine the feasibility of undertaking a cluster randomized controlled trial to test the effectiveness of a smartphone app, Power Up, co-designed with young people to support patient activation and shared decision making for mental health. Methods Overall, 270 young people were screened for participation and 52.5% (142/270) were recruited and completed baseline measures across 8 specialist child mental health services (n=62, mean age 14.66 (SD 1.99) year; 52% [32/62] female) and 2 mainstream secondary schools (n=80; mean age 16.88 [SD 0.68] years; 46% [37/80] female). Young people received Power Up in addition to management as usual or received management as usual only. Posttrial interviews were conducted with 11 young people from the intervention arms (specialist services n=6; schools n=5). Results Usage data showed that there were an estimated 50 (out of 64) users of Power Up in the intervention arms. Findings from the interviews indicated that young people found Power Up to be acceptable. Young people reported (1) their motivation for use of Power Up, (2) the impact of use, and (3) barriers to use. Out of the 142 recruited participants, 45.0% (64/142) completed follow-up measures, and the approaches to increase retention agreed by the steering group are discussed. Conclusions The findings of this study indicate that the app is acceptable, and it is feasible to examine the effectiveness of Power Up in a prospective cluster randomized controlled trial. Trial Registration ClinicalTrials.gov NCT02552797; https://clinicaltrials.gov/ct2/show/NCT02552797 (Archived by WebCite at http://www.webcitation.org/6td6MINP0)

scholarly journals Shared Decision Making With Young People at Ultra High Risk of Psychotic Disorder

2021 ◽  
Vol 12 ◽  
Author(s):  
Magenta Bender Simmons ◽  
Mary Brushe ◽  
Aurora Elmes ◽  
Andrea Polari ◽  
Barnaby Nelson ◽  
...  
Keyword(s):  
Decision Making ◽  
Young People ◽  
Focus Group ◽  
Shared Decision Making ◽  
Psychotic Disorder ◽  
Decision Aid ◽  
Decision Aids ◽  
Shared Decision ◽  
Pilot Testing ◽  
Increased Risk

Introduction: While the majority of young people who meet the criteria for being considered at increased risk of psychosis do not go on to develop a psychotic disorder, young people are currently being identified and treated in early intervention services. Ethical concerns have been raised concerning the decision about whether or not to provide treatment, and if so, what type of treatment. This study sought to support young people themselves to make these decisions with support from their clinician through a shared decision-making approach, facilitated by an online decision aid.Methods: This project used the International Patient Decision Aid Standards (IPDAS) to guide the development and piloting of an online decision aid across two phases: (1) qualitative, semi-structured focus groups with young people who were past clients and clinicians from an early psychosis service; and (2) pilot testing of the decision aid with clinicians and young people who were current clients to finalize the development.Results: Issues discussed by clinicians in the focus group were grouped into three main areas: (1) engagement phase; (2) assessment and priorities for treatment; and (3) initial and ongoing decision making. Clients focused on the context in which the decisions were made, including as they experienced initial feelings of resistance, and then acceptance of efforts made to describe and treat their mental health challenges. Clients highlighted the need for collaboration between themselves and their clinician, and the need to be equipped with the knowledge and tools to take care of themselves. These focus group data were used to refine the online decision aid. Pilot testing revealed that while it was overall useful and relevant, important limitations were noted by both clients and clinicians.Discussion: The use of a decision aid to facilitate shared decision making (SDM) in this area is feasible and has utility for both clients and clinicians. Use of such a tool can help to address the need to uphold the rights of young people as decision makers about their own care. Future efforts should embed decision aids within complex SDM interventions, and research to understand issues relating to implementation of these interventions.

scholarly journals Fertility preservation for transgender children and young people in paediatric healthcare: a systematic review of ethical considerations

2022 ◽  
pp. medethics-2021-107702
Author(s):  
Chanelle Warton ◽  
Rosalind J McDougall
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Young People ◽  
Fertility Preservation ◽  
Shared Decision Making ◽  
Shared Decision ◽  
Ethical Considerations ◽  
Children And Young People ◽  
Paediatric Care ◽  
Transgender Children

BackgroundWhile fertility preservation is recommended practice for paediatric oncology patients, it is increasingly being considered for transgender children and young people in paediatric care. This raises ethical issues for clinicians, particularly around consent and shared decision-making in this new area of healthcare.MethodsA systematic review of normative literature was conducted across four databases in June 2020 to capture ethical considerations related to fertility counselling and preservation in paediatric transgender healthcare. The text of included publications was analysed inductively, guided by the Qualitative Analysis Guide of Leuven.ResultsTwenty-four publications were identified for inclusion. Four key ethical considerations emerged from this literature: access to fertility preservation, conscientious objection, decision-making capacity of children and young people, and shared decision-making.ConclusionIn the identified literature, there is consensus that transgender children and young people should not be refused access to fertility preservation services solely due to their gender identity, and that clinicians with conscientious objections to fertility preservation for this group have an obligation to refer on to willing providers. Factors that create ethical complexity in this area of paediatric care include the child’s age, mental health, and parents’ views.

SSRIs and Depression in Children and Adolescents: The Imperative for Shared Decision-Making

2008 ◽  
Vol 16 (5) ◽  
pp. 354-358 ◽  
Author(s):  
Sarah Hetrick ◽  
Magenta Simmons ◽  
Sally Merry
Keyword(s):  
Decision Making ◽  
Young People ◽  
Children And Adolescents ◽  
Shared Decision Making ◽  
Selective Serotonin Reuptake Inhibitors ◽  
Depressive Disorders ◽  
Potential Outcomes ◽  
Shared Decision ◽  
Ssri Medication

Objective: In the context of controversy and uncertainty about the role of selective serotonin reuptake inhibitors (SSRIs) for the treatment of depressive disorders in children and adolescents, we consider the evidence of the benefits and risks of this class of medication and the possible role of shared decision-making as a practical way to guide clinicians, young people and their families through treatment decisions. Conclusion: We suggest that there is an imperative for clinicians to engage young people in a process of shared decision-making, given the uncertainties about SSRI medication in this age group. Shared decision-making provides a way for clinicians to engage young people and ensure they receive the treatment required for this disorder, the potential outcomes of which are severe.

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