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Table 2 Description of included reviews and studies

From: How do we best engage young people in decision-making about their health? A scoping review of deliberative priority setting methods

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Author, year

Study design

Priority setting features

Setting and participants

Measurements

Discussion

 

Review articles (n = 9)

1

Boland et al. 2019 [41]

Systematic review to identify barriers to and facilitators of SDM

Innovation was SDM or a collaborative decision-making approach between HCPs, parents, and/or children;

Paediatric Clinical Practice

Participants were children or young people up to age 18, or carers of the chid or young person.

HCPs (n = 19), parents (n = 18), children (n = 8), multiple perspectives (n = 26), and observers (n = 7)

Ottawa Model of Research Use measured:

• Decision Level

• Innovation level

• Adopters level

• Relational level

• Practice environment

• The majority of the SDM approaches were conducted on both parents and were found to be successful at decision making.

• Power imbalances influenced the magnitude of how much the young people’s views informed the final decision.

• HCPs and family made for difficult decision-making negotiations

• Capacity building of HCP to support families with high quality information

2

Cheng et al., 2017, United Kingdom, [42]

Scoping review to identify SDM approaches

Search strategy was developed to capture SDM approaches.

Participants were children or young people up to age 18, or carers of the chid or adolescent.

The setting was mental health services.

12 reviews aimed at parents, 8 reviews aimed at children and adolescents, and 2 aimed at both young people and parents.

22 papers were included, and grouped into six approaches:

• therapeutic techniques,

• psychoeducational information

• decision aids

• action planning or goal setting

• discussion prompts

• mobilizing patients to engage

• The majority of the SDM approaches were conducted with parents and young person, and were found to be successful at decisions making.

• However solely young people’s decision making was barely discussed.

3

Feenstra et al., 2014, Canada [43]

Systematic review of effective interventions that support decision making of children

Search strategy was developed to include decision making as an outcome, solely for youth and child health.

Young people under 18 years who are facing a health issue and seeking health services for risky behaviours, learning difficulties and end of life planning.

All studies were conducted in the United States.

The priority setting techniques included decision coaching, coaching plus educational aid, and education alone.

• Five studies in six papers were identified.

• Lack of interventions focused on supporting young people’s decision making.

• Studies included evaluation of parent and child decision but did not discuss children’s capacity to make their own decisions.

4

Gurung et al. 2020 [44]

Systematic scoping review on public engagement strategies in the paediatric health-care setting.

The experiences/outcomes/impact of patient, family and public engagement strategies in paediatric services.

Focused on patient, family and public engagement strategies in the paediatric health-care setting in high-income countries.

Most studies we identified examined child/youth/parent satisfaction with care after the implementation of an engagement strategy.

• 21 identified

• Absence of studies reviewing strategies targeting engagement with children/youth and families at the ‘service design and strategy’ and ‘policy-making’ levels.

• Fewer examined whether the implementation of the strategy produced changes in treatment outcomes and service improvement.

5

Malone et al., 2019 [45]

Systematic review to assess the effectiveness of interventions that promote participation in shared decision-making for children and young people

To promote SDM for children and adolescents with cystic fibrosis supported by parents or at healthcare professionals

Children and adolescents diagnosed with cystic fibrosis aged between four and 18 years. SDM with parents, carers and any healthcare professionals (e.g. doctors, nurses, allied professionals).

The final 26 studies that were reviewed were excluded, with reasons being mainly due to being non-RTC or the intervention not being appropriate.

• Authors did not find any studies that were eligible to include in the review.

• Recommendation for future research to aim to test models of SDM for young people with CF, which could be developed from existing models for adults; and also work out which methods young people prefer.

6

Pyke-Grimm et al., 2019 [46]

Young people’s involvement in cancer treatment decision making.

Young people’s involvement in their treatment decision making and within the context of their family and with their HCPs

Young people aged 15– 21 years. Also researched for studies including parents and health care providers of young people with cancer.

Influencing factors:

• Young people’s preferred, actual, and perceived involvement

• age and cognitive maturity, disease and illness factors, information and communication

• relationships, roles, and perspectives of parents and healthcare providers.

• 21 articles identified

• Decisions were influenced by the magnitude and timing of the decision, chronological and developmental stage, diseases stage, previous experience with diseases type and magnitude of the decision, and decisional and family context.

• Young people’s role in decision making is situational and often evolved with time.

7

Wijngaarde et al., 2021 [47]

Scoping review to explore SDM interventions and their effectiveness in terms of participation, knowledge, decisional conflict, satisfaction health-related quality of life, and treatment adherence for chronically and critically ill children

Addressed child participation in treatment decision-making, knowledge, decisional conflict, health-related quality of life, and treatment adherence

Researchers searched relevant medical databases published between January 2008 and January 2020 for studies targeting children aged 4–18 years old, suffering from a chronic and/or critical disease.

SDM interventions mostly used were decision aids (n = 8), questionnaires for caretakers/parents and children (n = 4), and a SDM toolkit (n = 2). Patient decision aids were used in all studies.

Data from the outcomes included a child’s level of participation, number of participants, tools for participation, and the use of eHealth tools in pediatric SDM.

• Nine studies identified.

• Study shows growing awareness amongst clinicians and parents that a child’s participation in SDM can lead to better health outcomes and improved knowledge about the disease and treatment options.

• Better knowledge decreases decisional conflict while positively impacting treatment adherence.

8

Wyatt et al., 2015 [48]

Systematic review and meta-analysis on interventions engaging paediatric and parent decision-making

Meta-analysis was performed on three outcomes: knowledge, decisional conflict, and satisfaction of the shared decision making process.

The majority (n = 34) of interventions targeted

parents alone, a minority targeted the paediatric patient alone (n = 4) and clinician alone (n = 3). Other studies targeted more than one stakeholder (n = 14), with the most frequently targeted the patient and parent dyad (n = 6).

Knowledge was assessed as percentage of questions correctly answered.

Decisional conflict was assessed by feeling uninformed, feeling unclear about personal values, feeling unsupported in decision making.

Satisfaction measured using a variety of non-standardized scales.

• 54 studies identified 15 studies were reported the in meta-analysis

• Meta-analysis revealed SDM interventions significantly improved knowledge, reduced decisional conflict, but increased satisfaction was non-significant.

9

Yamaji et al., 2020 [49]

Systematic review and meta-analysis on decision making of children with cancer

Articles looking at decision making including informed consent, informed assent, shared information. Qualitative research studies which had deliberation features.

Children aged 2 to 18 years who were diagnosed with any form or stage of cancer, and to whom cancer diagnosis was disclosed in high income countries (USA, UK, Netherlands, Canada, Ireland, Switzerland, Finland, Denmark, Sweden)

Four themes emerged that reflected the decision-making process of children with cancer: (a) facing changes brought about by a health threat, (b) preparing for action, (c) asserting one’s choice, and (d) internal and external influences.

• Respecting children’s preferences, values, and emotions may help build trusting relationships and promote their decision-making capability.

• Future research should focus on children’s emotions, cognition, development, and interactions with parents and health care professionals.

Primary study articles (n = 21)

10

Aoki et al., 2019 [50, 51]

Randomized Controlled Trial including quantitative Survey

Three steps: 1) Presenting diagnosis and treatment option to the patient, 2) Patient Reflection and Deliberation with health professional, 3) A week later, the patient meets with the nurse to discuss the decision. The nurse’s recommendations are accepted by the patient at the face-to face meeting.

Participants (n = 88) aged 20 years or older with a mental health diagnosis from Waseda, Japan

Combined Outcome Measure for Risk Communication and Treatment Decision-making Effectiveness (COMRADE) two subscales: satisfaction with communication and confidence in decision.

• Providing participants with SDM booklet to take-home allowed patients time to reflect on possible options.

• Nurse remote support or discussion post the initial diagnostic meeting provided patients with a safe sounding board while exploring available information

11

Sebti et al., 2019 [39]

A focused ethnography, with a participatory approach to promote improvements in sexual health-related knowledge and actions in children/youth

Four key informants (local & cultural experts) in the community provided advisory input throughout the study.

(a) local views and understandings of children/youth participation in sexual health-related discussions, decisions, and actions; (b) suitable data collection sites and methods; and (c) relevant key texts.

The study was conducted in Njombe, a Tanzanian rural community. Twenty-eight participants, 8–16 years of age, living in Njombe (Tanzania), were recruited from the HIV youth group.

Four principal themes were identified: (a) knowledge and understanding of sexual health, (b) children/youth value sexual health education and discussion, (c) supports and barriers for participation in sexual health education, and (d) children/youth value participation in their own care and promotion of their health

• The results highlight that young people have the capacities, interests, and values to actively participate in discussions, decisions and actions regarding their health in general and sexual health in particular

• The study demonstrates how (a) child/youth agency is socially mediated, as the actions of others can promote or impede the expression of their agency

• Community programs can provide effective assistance to support young people’s agency.

12

Barber et al., 2018 [52]

Mixed method feasibility study

Qualitative interviews, stakeholder consultations, observations, systematic review, and survey design and implementation

Stage one:

Systematic review of hypodontia literature. Interviews with and observations of adolescents, parents and dentists

Stage two:

Development of discrete-choice experiment survey

Stage three:

Pre-testing survey with cognitive interviews

Leeds Dentists Institute, UK.

Participants were young people aged 12–16 with hypodontia (n = 8), and their parents (n-8) and dentists (n = 5).

The discrete-choice experiment survey included 27 attributes on service delivery and treatment outcome.

• In the pre-testing interviews, young people found that the survey difficult to understand and so the survey was modified to increase acceptability.

• Pre-testing interviews suggest that the survey encourages decision preference for treatment.

• Including young people in the all stages of survey development improved acceptability.

13

Cioana, et al. 2019 [53]

A National Conference to build a national coalition to target the future of adolescent idiopathic scoliosis research and clinical care

The conference combined presentations and roundtable discussions to define an agenda for the coalition. Day 1 involved presentations related to the current landscape of adolescent idiopathic scoliosis research, Day 2 was focused on discussions regarding the development of the coalition.

The conference brought together adolescent idiopathic scoliosis stakeholders including patients, parents, students, clinicians and researchers (n = 23) across Canada.

Roundtable discussions were used to identify emerging priority areas to guide the research agenda.

• School, teachers and carers have an important role in promoting decision making for young people.

• Transdisciplinary teams to promote priority setting outcomes for youth.

• Including youth from the on-set as a critical component to positive outcomes

14

Coad et al., 2008 [54]

Intervention evaluation of setting up a youth council for priority setting

Background literature review

Set up the “Youth Council” which used young people friendly interviews and questionnaires on hospital preferences.

Participants were 17 young people aged 12–18 recruited from secondary schools in Coventry, UK.

10 girls and 7 boys, and majority white British ethnicity.

Evaluation workshop after 18 months of running youth council to understand the roles, concerns and satisfactions.

• The youth council advised on thedesign of questionnaires and surveys, developed a Bedside Booklet for the adolescent unit, Trust website, FamilyTalk (communication about conditions with young people), and posters to attract young people in research

• This is a long-term commitment which is successful with reward mechanisms, capacity building and creative approaches.

15

Dion et al. 2021 [55]

Qualitative study with peer researchers

Step 1: Working with Peer researchers to identify participant

Step 2: Setting up focus groups with peer researchers.

Step 3: Converting evidence synthesis to user friendly infographics with peer researchers

Step 4:Allow young people to engage with the material.

Step 5: Identify their own priority subjects though interactive activities

Step 6: Involvement of young mothers to organise the themes

Pregnant and parenting young women under 23 years and their services providers in Canada.

Better Outcomes Registry Network (BORN), focus group Discussions and first -second order themes with contribution from participants

• Important to combine evidence-based synthesis and local context specific knowledge or understanding.

• It was important to the young women to choose how their experiences are ordered.

• Confidentiality was respected if the young women choose not to publicize their story.

16

Groot et al. 2021 [56]

A qualitative evaluation study consisted of observations of council meetings, in-depth interviews with youth council members, and moderated group discussions.

The collective experiences of pediatric patient engagement from the perspective of adolescents themselves were sought to provide more insights for healthcare providers and researchers on how to involve children in a meaningful way in research and care

The youth council comprised nine members, aged from 12 to 18 years (at the start of the council), five girls and four boys. All of them have (a) chronic respiratory diseases: eight have asthma (ranging from mild to severe) and one has cystic fibrosis from Amsterdam, Netherlands.

Data collection consisted of observations of council meetings, in-depth interviews, and group discussions with the adolescents undertaken by an independent researcher. Topics of the interviews and group-sessions included members’ experiences in the youth council, their motivations (individual and group) and the outcomes

• Young people participating in a youth council, value group engagement, and experience different benefits, from having fun to peer support and feeling more confident.

• However, it also shows that long-term and meaningful participation requires an organizational shift that moves from an adult-led agenda towards a youth-led agenda.

• There is a need for an organizational climate in which unsolicited advice is valued and facilitated by formal structures to prevent adolescent patients’ frustration and demotivation in the longer term.

17

Guinaudie et al. 2020 [57]

Insights from the co-design and implementation of SDM in knowledge translation, clinical, operational, and research strategies within the ACCESS OM network.

Lived mental health experience is acknowledged and integrated as unique experiential knowledge and unique expertise to advise and to guide the project in collaboration with researchers, mental health clinicians, and decision makers.

ACCESS Open Minds (ACCESS OM) is a patient-oriented research initiative that is transforming and evaluating youth mental health services at more than 16 diverse sites across Canada.

ACCESS OM defines ‘patients’ as youth aged 11–25 years, and ‘patient partners’ includes youth patient partners and, family and carers patient partners

ACCESS OM assessed the innovative ways in which SDM strategies might foster effective integrated knowledge translation in a youth mental health research setting.

• SDM strategies foster dialog and partnerships among stakeholders (e.g., youth, family members/carers, clinicians, researchers, and policy makers) by acknowledging that diverse forms of knowledge (specifically experiential, cultural, clinical, and scientific knowledge) can lead to better health and improved social and economic outcomes for patients and communities.

• Challenges to SDM include power dynamics, time constraints, project pace, and tokenism.

18

Jordan et al. 2019 [58]

Participatory qualitative interviews were conducted using life grids and pie charts, and transcripts were analysed thematically.

This study explores adolescents’ perceptions and experiences, focusing on identifying the perceived barriers to, and facilitators for, their involvement in shared decision-making by focusing on their lived experiences during consultations.

A sample of nineteen young people between the ages of 13 and 19 years was recruited from young adult (transitional) or paediatric neurology, endocrinology, nephrology or rheumatology clinics in South Wales, UK.

Participatory interviews were conducted to explore the adolescents’ narratives in order to identify possible barriers and facilitators to SDM. Respondents were asked to complete a life grid with important events surrounding their health condition and doctors’ visits. A follow-up semi-structured interview schedule was also derived from the findings of our systematic review

• Significance of the relationship between the HCP and young person, and the importance of reducing the perceived power imbalance.

• Nearly all young people indicated a desire for the same or greater involvement in the decision-making process, particularly as they gain more experience with their condition.

• HCPs’ behaviour can improve adolescent involvement in SDM by ensuring they speak to patients directly, providing sufficient information about options, inviting questions, and making it clear that they want them to be involved.

19

Lopez-Vargas et al. 2019 [59]

A 1-day workshop.

The workshop process was informed by the James Lind Priority Setting Partnership methodology

Workshop was held in Sydney, Australia, in 2016. Young people aged 11 to 18 years with a chronic condition, parents/caregivers of children aged 0 to 18 years of age with a chronic condition, representatives from health consumer organisations

(eg, Cystic Fibrosis Australia, Allergy and Anaphylaxis Australia), health professionals (paediatricians, general practitioners, nurses), allied health professionals (counsellors, dietitians), researchers and policy-makers with expertise or an interest in childhood chronic conditions were eligible to attend the workshop.

The Kaleidoscope Project is an initiative that aims to identify the research priorities for children with a chronic condition. In total, 78 unique research questions were identified and narrowed to the top three research questions identified by each of the seven breakout groups.

• Research priorities focus on education and life participation, psychosocial wellbeing, quality of care and impact on the family.

• For young people, there was an emphasis for research to help them maintain a sense of normality and to be empowered for self-management and partnership in care. Specifically, this was expressed in terms of access to educational support, social acceptance and life and community participation.

20

Martinez et al., 2020 [60]

6 week youth led programme

Young people engaged in discussions, multimedia (vidoes) research priorities. Once the priorities were formed, visual storytelling and writing activities to identify health problems, and brainstormed a list of research questions that supported the development of survey form further prioritisation. Young people also used Photovoice to capture images in their neighbourhoods that represent their health priorities.

12 black and Latina young people aged 13–18, a young adult facilitator at the Boston Centres for Youth and Families.

The development of the survey with the young people generated priorities, and the Photovoice analysis.

• The survey deemed the priorities to be mental and sexual health, food access and community safety.

• Young people participation fosters deeper empowerment and leadership potential. Policy and health leaders should consider young people in decision about health care.

21

Morton et al., 2017 [61]

Web based Delphi survey to engage young people to prioritise secondary school environmental physical activity interventions

Stage one: develop list of potential interventions

From a systematic review

And secondary data analysis

-public advisory panel input and from strategic advisory group input

Stage two: document preparation for Delphi criteria to include reach, equality, feasibility, effectiveness, acceptability, and cost

Stage three: Delphi study

-round one

-feedback to participants

-round two

-Top 2 interventions selected for feasibility study

-feedback to participants

37 stakeholders including young people aged 13–16 years (n = 12), parents (n = 1), teachers (n = 6), health practitioners (7), academics (8) and commissioner (3).

Web based study to include diverse stakeholders from different locations.

Web based Delphi survey developed to critique the reach, equality, feasibility, effectiveness, acceptability, and cost of school based physical activity interventions. This was conducted in two rounds, and showed increase consensus with the majority.

• Participants ranked mental health and wellbeing as the most important to consider, followed by enjoying school.

• Making the intervention effective was consistently ranked the most important in each round.

22

Pflugeisen et al., 2019 [62]

Formation and first meeting of a community adolescent and young adult oncology council (AYAOC)

Full day workshop for 2.5 hours with non-for-profit CanTeen, young people and researchers. Workshop consisted of open discussion and prioritisation in pairs and small groups. The priorities that emerged were then bought to the big group to rank the top three priorities. Votes were tallied and created a road map for future meetings.

Young people with cancer plus their caregivers, siblings, oncology health professional from Washington State, United States. Hospital settings.

Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients

• AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the “next generation” of AYAs diagnosed with cancer.

• Sharing stories and connecting with peers may have personal value for individuals.

• Channelling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.

23

Rich et al., 2014 [63]

Evaluation of The Teen Advisory Board Committee through young people, hospital and facilitator perspectives

The aim of the Teen Advisory Committee was to:

-Explore adolescent patients and siblings areas of interest

-Make recommendations and suggestions to enhance quality and quantity of adolescent patient programs through self -advocacy.

-Inform hospital administration, clinicians, and other hospital employees of the work of the committee.

-Provide young people with leadership experience, writing proposals, and public speaking

The Teen Advisory Committee, Boston Children’s Hospital began in 2002 with 18 young people ranging in age from 14 to 21 years. 14 were patients, two were healthy siblings of patients, and two were peer leaders from the hospital’s Youth Advisory Program in the Division of Adolescent/Young Adult Medicine. The committee had a teen coordinator and five staff facilitators.

The evaluation on:

• Setting and maintaining

boundaries

• Structured recruitment, application, interviews

• One-to-One confidential facilitator/teen meetings

• Developmental stage

and chronic illness status

• -Building a sense of empowerment

• Addressing personal overarching concerns

• The program empowers adolescents with chronic illness by leading projects that led to the development of hospital policies, procedures, and quality improvement initiatives.

24

Saunders et al., 2016 [64]

Mixed methods study conducting stakeholder meetings, interviews and survey.

Literature review on community based participatory research to inform stakeholder panels

Stakeholder panels with young people, parents and professionals

Stakeholder panel meetings consisted of 11–17 year olds (n = 6), parents (n = 3) and professionals (n = 11).

Young people diagnosed with familial hypercholesterolemia (FH), patients with cardiovascular risk due to another chronic illness (e.g., obesity) and patients with no known cardiovascular risks (general population)

Three separate stakeholder meeting were hosted as virtual meetings on webinars

To evaluate the stakeholder panel, young people and parents filled in a survey and participated in semi-structured interviews.

• From the stakeholder panel evaluation, they found that there was a power dynamic between stakeholders and researchers.

• There are recommendations to share knowledge, build relationship and trust, and improve logistics.

25

Simmons et al., 2009 [65]

Mixed method stakeholder workshop and survey to score priorities.

Stage one: sociocultural analysis of populations in New Zealand, Fiju and Tongo in the form of interviews

Stage two: stakeholder engagement

Stage three: stakeholder workshop to confirm ANGELO framework using a scoring process (prioritisation)

Stage four: draft action plan

Stakeholders were recruited from six obesity prevention projects in Australia (n = 3), New Zealand, Fiji and Tonga from 2002 to 2005.

Target groups were under-5-year-olds (Australia), 4–12-year-olds (Australia) and 13–18-year-olds.

ANGELO process was developed in the four stages.

ANGELO prioritisation elements relate to behaviours, knowledge/skill gaps, and environmental barriers to healthy eating and physical activity prioritised on importance and changeability.

This prioritisation creates a list of potential targets for action created in a SMART format.

• The ANGELO framework was found to be flexible and efficient at agreeing an obesity prevention plan with the different communities.

• 120 potential behavioural, knowledge, skill and environmental ideas were identified at the each 2-day workshop, leading to prioritisation task.

• Adolescents were engaged and took ownership in the process.

26

Simmons et al., 2017 [66]

An uncontrolled cohort study.

Development and evaluation of a decision aid.

Web-based decision aid.-

Young people aged 12–25 years (n = 66) with varying depression severity. The study was undertaken at two headspace centres that are enhanced primary care services with a focus on youth mental health for young people aged 12–25 years in the northern suburbs of Melbourne, Australia.

Follow ups, where clients were asked if they were able to make decisions before and after decisions aid.

Clinicians rated how satisfied they were with decision-making.

• After the decisions aid, young people were more able to make a decision, and had significantly reduced depression scores.

• Potential for young person’s collaboration in the decision-making process of their treatment.

• Clinicians supported the decision-making choices.

27

Twine et al., 2016 [67]

Community engagement workshops. Delphi prioritisation method, face-to-face discussions and participatory visualisation.

Three workshops between community stakeholders and researchers.

- First workshop explained the study, compiled list of priorities and conducted Delphi round one.

-Between workshop one and two, the stakeholders received Delphi round two by text message.

-Second workshop held face-to-face discussions and conducted Delphi round three.

-Between workshop two and three, analysed the consensus and finalised top five priorities.

-Third workshop presented a diagram reflecting the relationships between priorities and formulated stakeholder forum.

Thirty two stakeholders from Agincourt HDSS, South Africa, including community Advisory Group, adolescents and parents.

The Delphi approach conducted over three rounds enabled voting of health priorities and reducing the priorities from a list of 10 in the first round to five priorities in the second and third rounds.

In the workshops, face-to-face and participatory visualisation facilitated deliberation between stakeholders and researchers.

• There was consensus from stakeholder and researchers that peer pressure and lack of information were underlying causes of adolescent health problems.

• The stakeholder forum formed in workshop three worked well with the researchers throughout to further develop public engagement strategies, share preliminary findings, discuss research progress,and identify policy champions to act on research findings.

28

Wysocki et al., 2016 [68]

Mixed methods.

Qualitative interviews and web based development of decision aid co-designed by adolescents

Semi-structured interviews with paediatric health care providers were conducted about shared

medical decision making.

Adolescents and parents were interviewed, mainly separately about retrospective decisions making about adherence to insulin pumps.

Interview themes contributed to the design of the web-based decision aid, including insight from a paediatric endocrinologist and a web health expert diabetes nurse.

Health care providers (n = 42) including paediatric endocrinologists and certified diabetes educators at 5 paediatric health care sites.

Young people with Type one Diabetes, and their parents (n = 36). Young people were selected with diverse perspectives of insulin pumps or continuous glucose monitoring, and based in health care setting.

Two web- based decision aids for adolescents and parents, based on their value:

1. Content selection to enable users to access information and navigate freely

2. Repetition of key points

3. Key information

in different formats

4. Active learning tactics to engage users with content

5. Maximal information strategies e.g. progress meter

6. Conversation

among teens, parents, and clinicians e.g. quiz

7. Text at sixth- to eighth-grade reading level

8. Balanced information

9. diverse age, race, sex, interests, and care choices among teens/families

• Adolescents found quizzes a preferred interactive feature to spur discussions with family and health professionals.

• Decision slider recorded thoughts at different time points to track change.

• Attention to detail to the design of decision aids can increase the effectiveness of decision making around changes to diabetes for adolescents and parents.

29

Von Scheven et al., 2021 [69]

Focus groups to uncover priority research questions on chronic diseases followed by focus groups to rank the priority questions.

During the first focus group session participants shared their experiences of living (or caring for someone) with a chronic condition and generated an extensive list of questions. The research team then categorized these questions by topic. During the second focus group, participants prioritized the topics they wanted researchers to focus on and ranked the specific questions they were most eager to have answered.

Young people aged between 15 and 23 years and their caregivers from San Francisco, US. Young people with chronic diseases such as Juvenile idiopathic arthritis, migraine headache, Idiopathic pulmonary capillaritis, Type 1 diabetes, Juvenile dermatomyositis, Systemic lupus erythematosus, Inflammatory bowel disease, Psoriasis, Celiac disease, Microscopic polyangitis)

The ranking of the priority topics was compared across the five groups to identify patterns by role and location. Themes included:

1. Health Care System and Care Coordination/Communication2. Insurance/Health Care Coverage;

3. Patient–Parent–Provider Relationship and Communication;

4. Social/Emotional/Family Impact and Support;

5. Transition to

Independence: Going from Pediatric to Adult Care. Involvement of Patients and the Public (GRIPP2) survey was also completed.

• Questions posed by young people experiencing different chronic conditions fell under three themes (physical, social–emotional and health care system) and two cross-cutting dimensions (living with a chronic illness and future with a chronic illness).

• Use of the Research Prioritization by Affected Communities (RPAC) method, which begins with the patient’s lived experiences provided nuanced insights into the complexity of living with a chronic illness and surfaced under-studied research topics to guide future research investment.

30

Zwaanswijk et al., 2011 [70]

Experimental design to investigate medical decision making

by vignettes

Based on a literature review and results of an earlier study, seven vignettes were selected for construction.

Six factors were used to construct vignettes:

-main subject of consultation

-illness stage, prognosis

-child age, child emotionality

-child’s physical condition

-amount of parents’ pre-existing knowledge of the illness

Participants were recruited and took place in three Dutch university-based paediatric oncology centres.

Children with cancer aged 8–16 (n = 34), parents (59), and survivors aged 8–16 at diagnosis and currently age 10–30 years (n = 51).

Each vignette was followed up with three questions about preferences related to the situations.

1. Information should be given to patient and parents simultaneously (yes/no)

2. The best way to inform the patient

3. The patient should participate in medical decision making (yes/no)

• Health-care providers should repeatedly assess the preferences of both parents’ and patients’ to adapt communication. Healthcare providers’ empathy was important.

• Preference for information to be given to child and parents simultaneously.