Shared decision‐making in the paediatric field: a literature review and concept analysis

Park, Eun Sook; Cho, In Young

doi:10.1111/scs.12496

Cited by 47 publications

(72 citation statements)

References 49 publications

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“…As found in previous studies across other childhood chronic conditions, parents may strive to protect their children from the burden of 'knowing' by managing communication about their disease and treatment, however this can mean that children are inadvertently denied opportunities for involvement in their care (7,14,(22)(23)(24)(25)(26). Children want to be aware of what is happening in their own bodies, involved in their own care, and empowered to address concerns and goals that are important to them, particularly as they grow up (6,12,15,24,(27)(28)(29)(30). They also desire experience in decisionmaking through incremental involvement to be better prepared for transition into adulthood when they will no longer rely on their parents as proxies for their health care decisions and responsibilities (7,18,23,30,31).…”

Section: Discussionmentioning

confidence: 99%

“…Mismatches between patient and clinician priorities have been recognized since the early 1960s, resulting in the paradigm shift in the approach to healthcare -from paternalism to partnership (15,(32)(33)(34)(35)(36). In pediatrics, differences between parent and clinician priorities have been well established (2,15,28,37). Shared decision-making models have been developed to manage this discordance and while some aspects (e.g.…”

Section: Discussionmentioning

confidence: 99%

“…Failure to involve patients and families in decision-making can exacerbate disempowerment, fear, decisional conflict, and disengagement from healthcare, which can jeopardize safety, quality of care and outcomes for children (2)(3)(4)(5)(10)(11)(12)(13). Despite this, evidence on child and parental perspectives on communication and decision-making in pediatrics is sparse (2,(14)(15)(16).…”

Section: Introductionmentioning

confidence: 99%

“…Children with CKD have a 30-fold increased risk of mortality compared with the age-matched population, and are at risk of serious comorbidities and impaired quality of life, which can limit their perceived capacity to participate in shared decision-making (3,17). Limited evidence exists on communicating and shared decision-making with children and families dealing with chronic and complex disorders (15,16,18). This study aimed to describe the child and parental perspectives on communication and decision-making in CKD to identify opportunities to improve shared decision-making, with an ultimate goal of improved care and better outcomes for children with CKD and their families.…”

Section: Introductionmentioning

confidence: 99%

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Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study

Gutman

Hanson

Bernays

et al. 2018

American Journal of Kidney Diseases

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Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study

Gutman

Hanson

Bernays

et al. 2018

American Journal of Kidney Diseases

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“…In paediatrics, shared decision‐making (SDM) happens when the health‐care team, parents and child collaborate as partners to make health decisions . Simply put, the health‐care team shares their expert knowledge (i.e.…”

mentioning

confidence: 99%

Is sharing really caring? Viewpoints on shared decision‐making in paediatrics

Jordan¹,

Tremblay²,

Lipstein

et al. 2020

J Paediatrics Child Health

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Shared decision-making (SDM), the cornerstone of family-centred care and the gold standard in health decision-making, occurs when the patient, family members and the health-care team members partner to make health decisions about the child. This partnership involves an exchange of medical information and information about patient/family preferences and values. Together, the health-care team, parent and patient deliberate to determine the best course of action for the child. Despite high-quality evidence supporting its positive impact on outcomes, SDM has not been widely adopted in paediatric clinical practice. Greater understanding of the impact of SDM on all members of the decision triad (parent, patient and health-care provider) may increase the likelihood of SDM adoption. Therefore, we present the viewpoints of a paediatric patient, parent and paediatrician about the use of SDM. A youth living with a rare chronic disease discusses the impacts of being involved and excluded from health decisions. A mother of a son living with a rare nephrotic condition discusses working with a health-care team who are committed and skilled in SDM and the positive impacts SDM has had for her son's care. A general paediatrician with research expertise in SDM discusses the individual and system level challenges and rewards of using SDM in her clinical practice. Based on the viewpoints presented, we offer pragmatic recommendations for using SDM in paediatric clinical practice.Early in their development, we teach children to share. As social beings, sharing is a vital life skill that encourages us to recognise and respond to the needs of others and collaborate to achieve a common goal. Sharing shows compassion, respect, and care for our fellow humans. In paediatric health care, it is reasonable to expect that sharing be a basic, natural and humanistic approach for clinicians, children and families to achieve a common goal: the best health outcomes for the child. In fact, sharing health decisions can improve patient outcomes. 1 In paediatrics, shared decision-making (SDM) happens when the health-care team, parents and child collaborate as partners to make health decisions. 2 Simply put, the health-care team shares their expert knowledge (i.e. evidence) and clinical experience, the parent and child share their expertise about their values, preferences and circumstances, and together they discuss and decide on the best treatment plan for the child. 3 Unlike paternalistic or autonomous decision-making, the onus is not on one person (i.e. the child) to make the final decision, but rather the decision is equitably (not necessarily equally) shared in a manner consistent with the child's developmental abilities and the child and parent's preferences for involvement.Despite being at the core of patient and family-centred care and necessary to achieve evidence-based health decisionmaking, 4,5 SDM is not common practice in paediatrics. 6,7 Here, we present the independent viewpoints of a youth, parent and paediatrician on the importance and ch...

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“You just want someone to help”: Outcomes that matter to parents when their child is treated for chronic pain

Joslin

Donovan‐Hall

Roberts

2023

Paediatric and Neonatal Pain

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In children's chronic pain services, healthcare decisions involve a three‐way interaction between the child, their parent or guardian, and the health professional. Parents have unique needs, and it is unknown how they visualize their child's recovery and which outcomes they perceive to be an indication of their child's progress. This qualitative study explored the outcomes parents considered important, when their child was undergoing treatment for chronic pain. A purposive sample of twenty‐one parents of children receiving treatment for chronic musculoskeletal pain, completed a one‐off semi‐structured interview that involved drawing a timeline of their child's treatment. The interview and timeline content were analyzed using thematic analysis. Four themes are evident at different points of the child's treatment course. The “perfect storm” that described their child's pain starting, “fighting in the dark” was a stage when parents focused on finding a service or health professional that could solve their child's pain. The third stage, “drawing a line under it,” changed the outcomes parents considered important, parents changed how they approached their child's pain and worked alongside professionals, focusing on their child's happiness and engagement with life. They watched their child make positive change and moved toward the final theme “free.” The outcomes parents considered important changed over their child's treatment course. The shift described by parents during treatment appeared pivotal to the recovery of young people, demonstrating the importance of the role of parents within chronic pain treatment.

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Shared decision‐making in the paediatric field: a literature review and concept analysis

Cited by 47 publications

References 49 publications

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study

Is sharing really caring? Viewpoints on shared decision‐making in paediatrics

“You just want someone to help”: Outcomes that matter to parents when their child is treated for chronic pain

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