Table 2 Characteristics of the included studies

 Abrines-Jaume, 2016, UK [50]

To explore the implementation of SDM in pediatric mental health services and identify clinician-determined facilitators to SDM

Qualitative

Secondary analysis of a larger study

Log-book of post-encounter stories

NR

23 HCPs (psychiatrists, psychologists, nurses, family therapists, social workers, play therapists)

 Andre, 2005, France [29]

To describe how pediatric residents involve children during medical decision-making

Quantitative

Prospective descriptive

Survey

75%

43 HCPs (pediatric residents)

 Bejarano, 2015, USA [51]

To evaluate the feasibility of implementing SDM practices in pediatrics and to assess physicians’ satisfaction with SDM

Mixed methods

Pre-post study

Survey

NR

5 HCPs (physicians)

 Boss, 2009, USA [52]

To determine fellows’ training in communication and decision and their perceived preparedness to lead family discussions

Mixed methods

Descriptive

Survey

72%

101 HCPs (pediatric fellows)

 Delany, 2017, Australia [53]

To get clinicians’ views about resources designed to aid parents facing end-of-life decisions for their child

Qualitative

Descriptive

Interviews

NR

18 HCP (not specified)

 Dodds, 2016, USA [54]

To understand pediatric physicians’ use SDM and their perceptions of barriers and facilitators to SDM for decisions about tumor necrosis factor-α inhibitor treatment

Quantitative

Descriptive

Survey

66%

196 HCPs (physicians)

 Fay, 2016, USA [55]

To assess the impact, acceptability, and feasibility of a tool designed to enhance SDM

Mixed methods

Descriptive

Interview

80%

4 HCPs (physicians)

 Frize, 2013, Canada [56]

To translate information, using a decision support tool, for parents making decisions in the neonatal intensive care unit.

Mixed methods

Descriptive

Not specified

NR

5 HCPs (physicians)

 Honeycutt, 2005, USA [57]

To examine physician reported use of participatory decision-making with children/parents

Quantitative

Descriptive

Survey

47%

219 HCPs (physicians)

 Lee, 2006, USA [58]

To explore clinician views and practices regarding assent and compare practice with existing guidelines

Mixed methods

Descriptive

Interviews and questionnaire

NR

35 HCPs (physicians, nurses, physician assistants)

 Lipstein, 2013, USA [59]

To understand the barriers and facilitators to SDM for juvenile idiopathic arthritis

Qualitative

Descriptive

Interviews

NR

10 HCPs (physicians and nurses)

 Miller, 2001, UK [60]

To investigate the ways children’s nurses see themselves facilitating youth in decision-making

Qualitative

Descriptive

Interviews and focus groups

NR

8 HCPs (nurses)

 Partridge, 2005, South Africa [61]

To characterize South African pediatricians’ practices and attitudes related to parent counseling and life-support decisions for premature infants

Quantitative

Descriptive

Survey

24%

394 HCPs (physicians)

 Runeson, 2001, Sweden [62]

To identify factors influencing children’s participation in healthcare decision-making

Qualitative

Critical incident technique

Open-ended questionnaire

40%

140 HCPs (physicians, nurses, assistant nurses, play therapists, psychologists)

 Schalkers, 2016, Amsterdam [63]

To investigate HCPs’ perspectives on, improving, child participation, in pediatric hospital care

Qualitative

Descriptive

Interviews

NR

10 HCPs

(heads of wards, physicians, nurses, play therapists, manager, communication advisor, policy advisor)

 Simmons, 2013, Australia [64]

To explore clinicians’ experiences and beliefs about treatment decision-making for youth diagnosed with depressive disorders

Qualitative

Descriptive

Interviews

NR

22 HCPs

(psychologists, psychiatrists, physicians, nurses, youth workers)

 Shirley, 2015, USA [65]

To describe the production, implementation, and evaluation of a decision aid for pediatric orthopedics

Quantitative

Descriptive

Questionnaire

NR

4 HCPs

(physicians)

 Tam-Seto, 2015, Canada [66]

To better understand SDM in adolescent mental health using the Canadian Model of Client-Centered Enablement

Qualitative

Critical incident technique

Interviews

NR

6 HCPs (occupational therapists)

 Vaknin, 2011, Isreal [67]

To examine HCPs’ attitudes, perceptions, and reported practices regarding the inclusion of pediatric patients in simple decisions

Quantitative

Descriptive

Survey

66%

143 HCP

(nurses and physicians)

 Coyne, 2012, Ireland [68]

To elicit children’s perspectives on participation in information sharing and decision-making

Qualitative

Descriptive

Interviews

NR

55 children

(aged 7–18)

 Coyne, 2011, Ireland [69]

To explore hospitalized children’s experiences and preferences for participation in decision-making

Qualitative

Descriptive

Interviews and focus groups

82%

55 children

(aged 7–18)

 Kelly, 2016, USA [70]

To better understand how children viewed their treatment decision-making involvement

Qualitative

Descriptive

Interviews

NR

29 children

(aged 9–17)

 Kelsey, 2007, UK [71]

To explore children’s perceptions of their involvement in healthcare decisions

Qualitative

Descriptive

Audio diary and interview

NR

10 children

(aged 12–16)

 Koller, 2017, Canada [72]

To examine how children with chronic medical conditions view healthcare education and decision-making

Qualitative

Descriptive

Interviews

NR

26 children

(aged 5–18)

 Lambert, 2013, Ireland [73]

To describe information exchange between HCPs and children in the hospital

Qualitative

Descriptive

Interviews and observation

NR

49 children

(aged 6–16)

 Lipstein, 2013b, USA [74]

To understand adolescents’ roles and preferences in chronic disease treatment decisions

Qualitative

Descriptive

Interviews

75%

15 children

(aged 11–18)

 Weaver, 2015, USA [75]

To investigate decision-making preferences of child oncology patients and parent/clinician behaviors that support their preferred decision-making role

Qualitative

Descriptive

Interviews

78%

40 children

(aged 12–18)

 Butler, 2014, USA [76]

To investigate perceptions of SDM among low-income minority parents of children referred to mental health services

Quantitative

Descriptive

Questionnaire

69%

36 parents

(from minority groups)

 Butler, 2015a, USA [77]

To examine associations between parental reported SDM and parental perceptions of children’s mental health care

Quantitative

Descriptive

Survey

NR

21,721 parents

 Butler, 2015b, USA [78]

To examine whether SDM varies by child health and whether receiving medical home care attenuates differences in SDM among child health conditions.

Quantitative

Descriptive

Survey

NR

21,721 parents

 Fiks, 2010, USA [79]

To identify SDM patterns among children with attention-deficit/hyperactivity disorder or asthma and determine if demographics, health status, or access to care are associated with SDM

Quantitative

Cross-sectional descriptive

Survey database

NR

4135 parents

(person from the household who knew the most about the child’s health)

 Gkiousias, 2016, UK [80]

To explore parents’ decision-making process for pediatric management otitis media with effusion

Qualitative

Descriptive; subgroup analysis of larger study

Interviews

NR

12 parents

 Hummelinck, 2007, UK [81]

Explore parents’ perspectives on the relationship with HCPs and their involvement in decisions about their child’s care

Qualitative

Descriptive

Interviews

51%

23 parents

 Kline, 2012, USA [82]

To evaluate family satisfaction and decision-making with a pediatric hematology–oncology palliative care program

Mixed methods

Descriptive

Interviews and survey

56%

20 parents

(or guardians)

 Lerret, 2016, USA [83]

To report parents’ medical decision-making experiences for children who had a solid organ transplant

Qualitative

Prospective, longitudinal

Interviews

86%

48 parents

 Li, 2016, Canada [84]

To explore parents’ perceptions of decisional needs for genome-wide sequencing for their child

Qualitative

Interpretive descriptive

Interviews

71%

15 parents

 Mack, 2011, USA [85]

To evaluate parents’ involvement and preferences for decision-making regarding their child’s cancer care

Quantitative

Descriptive

Survey

70%

194 parents

 Mak, 2014, Canada [86]

To understand parents’ perspectives on decision-making for child anxiety treatment and to identify ways to promote parental involvement in treatment decisions

Qualitative

Descriptive

Interviews

68%

19 parents

 Pyke-Grimm, 2006, USA [87]

To determine factors that parents identified as influencing their role in treatment decision-making for their child with cancer

Mixed methods

Descriptive

Interviews and questionnaires

NR

36 parents

 Rosati, 2017, Italy [88]

To explore general parental views on SDM and patient-physician SDM relationships in pediatric outpatients’ clinic

Quantitative

Descriptive

Survey

85%

458 parents

(one grandmother)

 Smalley, 2014, USA [89]

To determine families’ perceptions of SDM in their child’s health care and correlates of perceived SDM

Quantitative

Cross-sectional descriptive

Survey database

NR

11,102 parents (weighted)

 Valenzuela, 2014, USA [90]

To describe caregiver-report of SDM with their child’s health care provider with youth with type 1 diabetes

Quantitative

Descriptive

Database

NR

439 parents

(described as caregivers of the child)

 Walker-Vischer, 2015, USA [91]

To describe the experience of Latino parents of hospitalized children during family-centered rounds

Qualitative

Descriptive

Survey

85%

17 parents

(minority group)

 Walter, 2016, USA [92]

To learn about parent’s experiences of having goals of care discussions with their child’s HCP

Mixed methods

Descriptive

Interviews and survey

75% (survey)

55 parents

(one other)

 Xu, 2004, USA [93]

To explore whether there are ethnic differences in parents’ perceptions of the participatory styles of their children’s physicians

Quantitative

Descriptive

Survey

52%

5941 parents

(described as households)

 Yin, 2012, USA [94]

To assess whether parental health literacy is associated with differences in perceived barriers to care and attitudes regarding participatory decision-making with the HCP

Quantitative

Descriptive

Questionnaire

71%

823 parents

(or legal guardian)

 Brinkman, 2011, USA [95]

To describe physician behavior during treatment-planning encounters for children newly diagnosed as having ADHD

Quantitative

Prospective cohort

Video-recorded clinical consultations

65% for parents

26 observed consultations

 Cahill, 2007, UK [96]

To identify interaction features between doctors, children, and their caregivers in the consultation that are associated with the child’s participation

Qualitative

Descriptive

Video-recorded clinical consultations

8% of HCPs

31 observed consultations

 Elwyn, 1999, UK [97]

To examine the feasibility of SDM in consultations, when conflict occurs between parents and clinicians, about antibiotics for an upper respiratory tract infection

Qualitative

Descriptive

Recordings of consultation discourse

NR

2 observed consultations

 Hallstrom, 2002, Sweden [98]

To investigate the extent to which parents participate in decisions concerning their hospitalized child’s care and identify factors influencing a parent’s participation

Quantitative

Observational

Field notes of observations

96%

35 parents of 24 children were observed

 Lipstein, 2014, USA [99]

To understand how decisions about higher-risk treatments are made for pediatric chronic conditions

Qualitative

Descriptive

Video-recorded clinical consultations

91% of HCPs

21 observed consultations

 Runeson, 2002, Sweden [100]

To illustrate children’s participation in decision-making and various levels of participation

Mixed methods

Observational

Ratings and field notes of observations

96%

135 observed hours of 24 hospitalized children

 Wiering, 2016, the Netherlands [101]

To explore how oncologists involve families in SDM and which factors are associated with this process

Quantitative

Descriptive

Rating scale

NR

43 observed consultations

 Angst, 1996, USA [102]

To describe how children with chronic illness and their parents are involved in health care decisions

Qualitative

Secondary analysis

Interviews

NR

16 parents;

28 children

 Astbury, 2017, UK [103]

To explore the processes that support SDM when HCPs and parents are creating plans to improve the well-being of children

Qualitative

Descriptive

Interviews

NR

11 HCPs (not specified);

11 parents

 Beck, 2014, Canada [104]

To examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia

Qualitative

Descriptive

Focus groups

NR

10 HCP;

16 parents;

7 children

 Boland, 2016, Canada [105]

To explore barriers and facilitators to implementing SDM and decision support in a children’s hospital

Qualitative

Interpretive descriptive

Interviews and focus groups

Convenience sample

35 HCP;

15 parents;

7 children

 Coyne, 2006, Ireland [106]

To explore children’s, parents’, and nurses’ views on participation in care in the healthcare setting

Qualitative

Grounded theory

Interviews, observations, and drawings

NR

12 HCPs;

10 parents;

11 children

 Coyne, 2014, Ireland [107]

To explore children with cancer's participation in SDM and identify confounding and facilitating factors that influence children’s participation in SDM

Qualitative

Descriptive

interviews

NR

40 HCP;

22 parents;

20 children

 Daboval, 2016, Canada [108]

To document interactions between parents and neonatologists that parents linked to their satisfaction with SDM

Qualitative

Multiple-case ethnomethodological study

Interviews

NR

6 HCPs;

10 parents

 Fiks, 2011, USA [109]

To compare how parents and clinicians understand SDM in attention-deficit/hyperactivity disorder

Qualitative

Descriptive

Interviews

100% HCPs;

NR parents

30 HCPs;

60 parents

 Garnett, 2016, UK [110]

To explore child-parent SDM for childhood asthma management

Qualitative

Descriptive

Interviews

NR

9 parents;

8 children

 Heath, 2016, UK [111]

To explore how parents and HCPs make decisions regarding putting children forward for pediatric epilepsy surgery

Qualitative

Descriptive, observational

Interviews

NR

10 HCPs;

9 parents

 Iachini, 2015, US [112]

To explore youth and parent perspectives of practitioner behaviors important for fostering treatment engagement

Qualitative

Exploratory

Focus group

NR

11 parents;

19 children

 Kahveci, 2014, Turkey [113]

To examine SDM in management of critically ill children and the experiences of parents, physicians and nurses

Qualitative

Descriptive

Interviews

72% physicians; 69% nurses;

28% parent

17 HCPs;

6 parents

 Karnieli-Miller, 2009, Israel [114]

To analyze SDM regarding medical treatment in real-time encounters

Qualitative

Phenomenological

Interviews and observations

NR

17 HCPs;

17 observed consultations

 Kavanaugh, 2005, USA [115]

To describe life support decision-making and the decision support needs of parents, physicians, and nurses for extremely premature infants

Qualitative

Collective case study

Interviews

NR

8 HCPs;

6 parents

 Lecouturier, 2015, UK [116]

To explore management and treatment of intermittent distance exotropia decisions and what can be done to support decision-making for clinicians, parents and children

Qualitative descriptive

Descriptive

Interviews

NR

21 HCPs;

37 parents

 Levy, 2016, USA [117]

To describe influences on SDM between primary care pediatricians and parents of children with autism

Qualitative

Descriptive

Interviews

22% for HCPs;

NR parents

20 HCPs;

20 parents

 Markworo, 2014, Kenya [118]

To determine parental involvement in decision-making about their hospitalized children

Mixed methods

Descriptive cross sectional

Interviews and questionnaires

83% HCPs;

88% parents

144 HCPs;

161 parents

 Miller, 2009, USA [119]

To explore parent–child collaborative decision-making for chronic illness management

Qualitative

Descriptive

Interviews and focus groups

NR

16 parents;

18 children

 Pentz, 2012, Canada and USA [120]

To create a theory of family decision-making regarding pediatric allogeneic transplantation for the treatment of childhood cancer

Mixed methods

Descriptive

Interviews

NR

192 parents

5 children

 Ruhe, 2016, Switzerland [121]

To explore how patient participation was put into practice in a pediatric oncology setting

Qualitative

Secondary analysis from larger study; descriptive

Interviews

NR for HCPs;

81% for children; 90% for parents

16 HCPs;

19 parents;

17 children

 Sajeev, 2016, Australia [122]

To develop and pilot test a decision aid to assist parents making cancer or a hematological decisions with their HCPs

Mixed methods

Observational pilot

Questionnaires/open-ended questions

65% for HCPs;

72% for parents;

15 HCPs;

31 parents

 Sleath, 2011, USA [123]

To examine the extent HCPs engaged in SDM with caregivers and children and factors associated with question asking and SDM

Quantitative

Cross sectional

Interviews and observations

95% HCP

88% parents (some children in sample, not separated)

41 HCPs;

320 parents (some children in sample, not separated)

 Smith, 2013, UK [124]

To investigate parent–HCP SDM during the diagnosis of suspected shunt malfunction and their perceptions/experiences of SDM within this clinical context

Mixed methods

Descriptive

Interviews, questionnaires, and video-taped interactions

NR

14 HCPs;

28 parents

 Stille, 2013, USA [125]

To describe factors that influence parent–clinician partnerships in SDM when children are referred to subspecialists

Qualitative

Descriptive

Focus groups

NR

23 HCPs;

19 parents

 Young, 2006, UK [126]

To explore SDM in the context of community-based physiotherapy services for children with cerebral palsy

Qualitative

Descriptive

Interviews and focus group

NR

10 HCPs;

10 parents;

11 children

 Zwaanswijk, 2007, the Netherlands [127]

To explore interpersonal, informational, and decisional preferences of participants involved in pediatric oncology

Qualitative

Descriptive

Online focus groups

29% parents;

36% children;

34% adults with childhood experience

18 parents;

27 children + 32 adults with childhood illness experience