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.

scholarly journals Healthcare professionals’ behaviour regarding the implementation of shared decision-making in screening programmes: A systematic review

2021 ◽  
Author(s):  
María José Hernández-Leal ◽  
María José Pérez-Lacasta ◽  
María Feijoo-Cid ◽  
Vanesa Ramos-García ◽  
Misericòrdia Carles-Lavila
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Shared Decision Making ◽  
Healthcare Professionals ◽  
Shared Decision

Shared Decision Making in Psoriasis: A Systematic Review of Quantitative and Qualitative Studies

2018 ◽  
Vol 20 (1) ◽  
pp. 13-29 ◽  
Author(s):  
Marie Hamilton Larsen ◽  
Kåre Birger Hagen ◽  
Anne Lene Krogstad ◽  
Astrid Klopstad Wahl
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Shared Decision Making ◽  
Qualitative Studies ◽  
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

scholarly journals Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment: A systematic review

2018 ◽  
Vol 101 (7) ◽  
pp. 1157-1174 ◽  
Author(s):  
Eden G. Robertson ◽  
Claire E. Wakefield ◽  
Christina Signorelli ◽  
Richard J. Cohn ◽  
Andrea Patenaude ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Decision Making ◽  
Shared Decision Making ◽  
Pediatric Oncology ◽  
Shared Decision ◽  
Oncology Clinical Trial ◽  
Clinical Trial Enrollment

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.

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