Dataset Information

Children's active participation in decision-making processes during hospitalisation: An observational study.

ABSTRACT:

Aims and objectives

The aim was to explore and describe the child's active participation in daily healthcare practice at children's hospital units in Sweden.

Objectives

(a) Identify everyday situations in medical and nursing care that illustrate children's active participation in decision-making, (b) identify various ways of active participation, actual and optimal in situations involving decision-making and (c) explore factors in nursing and medical care that influence children's active participation in decision-making.

Background

Despite active participation being a fundamental right for children, they are not always involved in decision-making processes during their health care. There still remains uncertainty on how to support children to actively participate in decisions concerning their health care.

Design

A qualitative study with overt, nonparticipant observations fulfilling the COREQ checklist criteria.

Methods

Observations of interactions between children aged 2 and 17 years with both acute and chronic conditions, their parents, and healthcare professionals were conducted at three paediatric hospitals in Sweden. The Scale of Degrees of Self Determination was used to grade identified situations. The scale describes five levels of active participation, with level one being the least and level five being the most active level of participation. Normative judgements were also made.

Results

Children's active participation was assessed as being generally at levels four and five. Children demonstrated both verbal and nonverbal ways of communication during decision-making. Findings indicated that children's, parents' and healthcare professional's actions influenced children's active participation in decision-making processes involving healthcare.

Conclusions

Healthcare professionals specialised in paediatrics need to embrace both a child perspective and a child's perspective, plan care incorporating key elements of a child-centred care approach, to ensure children's active participation at a level of their choosing.

Relevance to clinical practice

There is a need for awareness creation to help healthcare professionals facilitate children's active participation in their care and decision-making.

SUBMITTER: Quaye AA

PROVIDER: S-EPMC7328781 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Publications

Children's active participation in decision-making processes during hospitalisation: An observational study.

Quaye Angela A AA Coyne Imelda I Söderbäck Maja M Hallström Inger Kristensson IK

Journal of clinical nursing 20190917 23-24

<h4>Aims and objectives</h4>The aim was to explore and describe the child's active participation in daily healthcare practice at children's hospital units in Sweden.<h4>Objectives</h4>(a) Identify everyday situations in medical and nursing care that illustrate children's active participation in decision-making, (b) identify various ways of active participation, actual and optimal in situations involving decision-making and (c) explore factors in nursing and medical care that influence children's ...[more]

PMID: 31430412

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Project description:ObjectiveAmong young children excessive externalizing behaviors often predict adolescent conduct and substance use disorders. Adolescents with those disorders show aberrant brain function when choosing between risky or cautious options. We therefore asked whether similarly aberrant brain function during risky decision-making accompanies excessive externalizing behaviors among children, hypothesizing an association between externalizing severity and regional intensity of brain activation during risky decision-making.MethodFifty-eight (58) 9-11 year-old children (both sexes), half community-recruited, half with substance-treated relatives, had parent-rated Child Behavior Checklist Externalizing scores. During fMRI, children repeatedly chose between doing a cautious behavior earning 1 point or a risky behavior that won 5 or lost 10 points. Conservative permutation-based whole-brain regression analyses sought brain regions where, during decision-making, activation significantly associated with externalizing score, with sex, and with their interaction.ResultsBefore risky responses higher externalizing scores were significantly, negatively associated with neural activation (t's: 2.91-4.76) in regions including medial prefrontal cortex (monitors environmental reward-punishment schedules), insula (monitors internal motivating states, e.g., hunger, anxiety), dopaminergic striatal and midbrain structures (anticipate and mediate reward), and cerebellum (where injuries actually induce externalizing behaviors). Before cautious responses there were no significant externalizing:activation associations (except in post hoc exploratory analyses), no significant sex differences in activation, and no significant sex-by-externalizing interactions.ConclusionsAmong children displaying more externalizing behaviors extensive decision-critical brain regions were hypoactive before risky behaviors. Such neural hypoactivity may contribute to the excessive real-life risky decisions that often produce externalizing behaviors. Substance exposure, minimal here, was a very unlikely cause.

Project description:BackgroundShared decision-making is the gold standard for good clinical practice, and thus, psychometric instruments have been established to assess patients' generic preference for participation (e.g., the Autonomy Preference Index, API). However, patients' preferences may vary depending on the specific disease and with respect to the specific decision context. With a modified preference index (API-Uro), we assessed patients' specific participation preference in preference-sensitive decisions pertaining to urological cancer treatments and compared this with their generic participation preference.MethodsIn Study 1, we recruited (N = 469) urological outpatients (43.1% urooncological) at a large university hospital. Participation preference was assessed with generic measures (API and API case vignettes) and with the disease-specific API-Uro (urooncological case vignettes describing medical decisions of variable difficulty). A polychoric exploratory factor analysis was used to establish factorial validity and reduce items. In Study 2, we collected data from N = 204 bladder cancer patients in a multicenter study to validate the factorial structure with confirmatory factor analysis. Differences between the participation preference for different decision contexts were analyzed.ResultsStudy 1: Scores on the specific urooncological case vignettes (API-Uro) correlated with the generic measure (r = .44) but also provided incremental information. Among the disease-specific vignettes of the API-Uro, there were two factors with good internal consistency (α ≥ .8): treatment versus diagnostic decisions. Patients desired more participation for treatment decisions (77.8%) than for diagnostic decisions (22%), χ2(1) = 245.1, p ≤ .001. Study 2: Replicated the correlation of the API-Uro with the API (r = .39) and its factorial structure (SRMR = .08; CFI = .974). Bladder cancer patients also desired more participation for treatment decisions (57.4%) than for diagnostic decisions (13.3%), χ²(1) =84, p ≤ .001.ConclusionsThe desire to participate varies between treatment versus diagnostic decisions among urological patients. This underscores the importance of assessing participation preference for specific contexts. Overall, the new API-Uro has good psychometric properties and is well suited to assess patients' preferences. In routine care, measures of participation preference for specific decision contexts may provide incremental, allowing clinicians to better address their patients' individual needs.

Dataset Information

Children's active participation in decision-making processes during hospitalisation: An observational study.

Aims and objectives

Objectives

Background

Design

Methods

Results

Conclusions

Relevance to clinical practice

Publications

Children's active participation in decision-making processes during hospitalisation: An observational study.

Similar Datasets

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