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Table 2 Characteristics of the included studies

From: Barriers and facilitators of pediatric shared decision-making: a systematic review

Author, year, country of origin Study objective related to this systematic review Methodological approach* Design Data source* Response rate* Participants*
Citations reporting healthcare professional perceptions only
 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)
Citations reporting child perceptions only
 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)
Citations reporting parent perceptions only
 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)
Citations reporting observers’ perspectives only
 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
Citations reporting multiple perspectives
 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
  1. *Reflects those that are pertinent to the research question of this study