An Emerging Field of Research

Lipstein, Ellen A.; Brinkman, William B.; Fiks, Alexander G.; Hendrix, Kristin S.; Kryworuchko, Jennifer; Miller, Victoria A.; Prosser, Lisa A.; Ungar, Wendy J.; Fox, David

doi:10.1177/0272989x14546901

Cited by 74 publications

(25 citation statements)

References 59 publications

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“…Whilst negotiation has been mentioned as important in some other models [e.g., 3], containment appears to be a novel finding. This could highlight the unique situation that exists when working with children and young people of having multiple stakeholders involved in the process of SDM [30], each with their own values and preferences. This corresponds with findings indicating that discordant views are frequent between parents, young people and clinicians [31, 32].…”

Section: Discussionmentioning

confidence: 99%

Barriers and facilitators to shared decision making in child and youth mental health: clinician perspectives using the Theoretical Domains Framework

Hayes

Edbrooke‐Childs

Town

et al. 2018

Eur Child Adolesc Psychiatry

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Shared decision making (SDM) is increasingly being suggested as an integral part of mental health provision. Yet, there is little research on what clinicians believe the barriers and facilitators around practice to be. At the same time, there is also increasing recognition of a theory-practice gap within the field, with calls for more pragmatic uses of theory to inform and improve clinical practice. Using the Theoretical Domains Framework (TDF), a comprehensive, theoretical-led framework, underpinned by 33 behaviour change theories and 128 constructs, clinician perceived barriers and facilitators to SDM are investigated. The sample comprised of 15 clinicians across two sites in England, who took part in qualitative semi-structured interviews and focus groups. Transcripts were analysed using a deductive thematic analysis, and themes were coded under each theoretical domain. Overall, 21 barriers and facilitators for SDM in child and youth mental health were identified across ten domains of the TDF. Under capability, barriers and facilitators were found for knowledge, skills, memory/attention/decision making processes, and behavioural regulation. For opportunity, barriers and facilitators were found for social influences, as well as environmental context and resources. Finally, for motivation, domains covered included: beliefs about consequences, beliefs about capabilities, emotions, and professional role and identity. Findings suggest that a range of barriers and facilitators affect clinicians' abilities to engage in SDM with young people and parents. Interventions which target different domains related to capability, opportunity and motivation should be developed to better facilitate young people and their families in care and treatment decisions.

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Section: Discussionmentioning

confidence: 99%

Barriers and facilitators to shared decision making in child and youth mental health: clinician perspectives using the Theoretical Domains Framework

Hayes

Edbrooke‐Childs

Town

et al. 2018

Eur Child Adolesc Psychiatry

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“…To change and restructure the working procedures for children’s participation in practice, it is crucial to consider both the individual and contextual factors such as attitudes, values, knowledge, readiness for behavioral change, culture, resources, and priorities [ 55 ]. For example, it has been maintained that pediatric care needs guidance and support [ 56 ], education [ 57 ], training [ 58 ], and interventions and methods (for example, eHealth services such as Sisom) [ 29 , 53 , 59 , 60 ] to increase children’s participation. This entails extensive effort by both the health care services provided for children and the professionals who work there to increase their ability to involve children in decision making.…”

Section: Discussionmentioning

confidence: 99%

Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study

Gilljam¹,

Nygren²,

Svedberg³

et al. 2020

J Med Internet Res

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Background For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. Objective The aim of this study was to investigate children’s participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. Methods A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children’s levels of participation guided by a framework based on Shier’s model of participation. Results Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier’s participation model: children were listened to, children were supported to express their views, and children’s views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. Conclusions This study shows that the eHealth service Sisom can increase children’s participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children’s health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care.

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“…In children, true ‘informed assent’ takes into account the child’s age, ability to process information relating to their health condition and emotional readiness for this process [ 32 ]. The general opinion appears to be that seven years old is a suitable minimum age of informed assent [ 8 , 13 , 22 , 33 ], with progressively more competent decisional reasoning expected during adolescence [ 33 ].…”

Section: Discussionmentioning

confidence: 99%

Keep Calm and Carry on: Parental Opinions on Improving Clinical Dietary Trials for Young Children

Nicholl

O’Sullivan

2018

Nutrients

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Recruitment can be an issue for paediatric research. We aimed to investigate parental opinions of paediatric clinical assessments, and to combine findings with recent literature to inform the design of a clinical dietary trial. We used convenience sampling to recruit 17 parents of children aged 2–6 years from two community playgroups in Perth, Western Australia. Three focus groups considered proposed child assessments, study design, and potential study enrolment. Qualitative thematic analysis of focus group transcripts used NVivo 11 (QSR, Melbourne, VIC, Australia). Four main parental concerns emerged, presented here with solutions combining parent responses and relevant literature. (1) Parent and child needle fear: a good experience and a good phlebotomist help keep participants calm, and offering additional analysis (e.g., iron status) makes blood tests more worthwhile. (2) Concerns about children’s age, stage, understanding and ability to cope: create a themed adventure to help explain concepts and make procedures fun. (3) Persistent misunderstandings involving study purpose, design, randomization and equipoise: provide clear information via multiple platforms, and check understanding before enrolment. (4) Parental decisions to enrol children focused on time commitment, respectful treatment of their child, confronting tests and altruism: child-centred methodologies can help address concerns and keep participants engaged throughout procedures. Addressing the concerns identified could improve participation in a range of paediatric health interventions.

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An Emerging Field of Research

Cited by 74 publications

References 59 publications

Barriers and facilitators to shared decision making in child and youth mental health: clinician perspectives using the Theoretical Domains Framework

Barriers and facilitators to shared decision making in child and youth mental health: clinician perspectives using the Theoretical Domains Framework

Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study

Keep Calm and Carry on: Parental Opinions on Improving Clinical Dietary Trials for Young Children

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