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Factors that influence family and parental preferences and decision making for unscheduled paediatric healthcare: a systematic review protocol.

ABSTRACT: There is a plethora of factors that dictate where parents and families choose to seek unscheduled healthcare for their child; and the complexity of these decisions can present a challenge for policy makers and healthcare planners as these behaviours can have a significant impact on resources in the health system. The systematic review will seek to identify the factors that influence parents' and families' preferences and decision making when seeking unscheduled paediatric healthcare. Five databases will be searched for published studies (CINAHL, PubMed, SCOPUS, PsycInfo, EconLit) and grey literature will also be searched. Inclusion and exclusion criteria will be applied and articles assessed for quality. A narrative approach will be used to synthesise the evidence that emerges from the review. By collating the factors that influence decision-making and attendance at these services, the review can inform future health policies and strategies seeking to expand primary care to support the provision of accessible and responsive care. The systematic review will also inform the design of a discrete choice experiment (DCE) which will seek to determine parental and family preferences for unscheduled paediatric healthcare. Policies such as Sláintecare that seek to expand primary care and reduce hospital admissions from emergency departments need to be cognisant of the nuanced and complex factors that govern patients' behaviour.

SUBMITTER: Nicholson E

PROVIDER: S-EPMC7016877 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Factors that influence family and parental preferences and decision making for unscheduled paediatric healthcare: a systematic review protocol.

Nicholson Emma E McDonnell Therese T Hamza Moayed M Barrett Michael M Brunsdon Christopher C Bury Gerard G Charlton Martin M Collins Claire C Deasy Conor C De Brun Aoife A Fitzsimons John J Galligan Marie M Hensey Conor C Kiernan Fiona F McAuliffe Eilish E

HRB open research 20190614

There is a plethora of factors that dictate where parents and families choose to seek unscheduled healthcare for their child; and the complexity of these decisions can present a challenge for policy makers and healthcare planners as these behaviours can have a significant impact on resources in the health system. The systematic review will seek to identify the factors that influence parents' and families' preferences and decision making when seeking unscheduled paediatric healthcare. Five datab ...[more]

PMID: 32104777

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Project description:IntroductionHealth systems offer access to unscheduled care through numerous routes; however, it is typically provided by general practitioners (GPs), by emergency medicine doctors in in emergency departments (EDs) and by GPs in out-of-hours GP services such as practitioner cooperatives. Unscheduled healthcare constitutes a substantial portion of healthcare delivery. A systematic review was conducted to establish the factors that influence parents' decision making when seeking unscheduled healthcare for their children. The systematic review question was "What are the factors that influence the decision making of parents and families seeking unscheduled paediatric healthcare?"MethodFive databases (CINAHL, PubMed, SCOPUS, PsycInfo, EconLit) and four grey literature databases (Proquest, Lenus, OpenGrey, Google Scholar) were searched. The titles and abstracts of 3746 articles were screened and full-text screening was performed on 177 of these articles. Fifty-six papers were selected for inclusion in the review. Data relating to different types of unscheduled health services (namely primary care, the emergency department and out-of-hours services) were extracted from these articles. A narrative approach was used to synthesise the extracted data.ResultsSeveral factors were identified as influencing parental preferences and decision making when seeking unscheduled healthcare for their children. A number of the included studies identified pre-disposing factors such as race, ethnicity and socioeconomic status (SES) as impacting the healthcare-seeking behaviour of parents. Unscheduled healthcare use was often initiated by the parent's perception that the child's condition was urgent and their need for reassurance. The choice of unscheduled service was influenced by a myriad of factors such as: waiting times, availability of GP appointments, location of the ED, and the relationship that the parent or caregiver had with their GP.ConclusionPolicy and planning initiatives do not always reflect how patients negotiate the health system as a single entity with numerous entry points. Altering patients' behaviour through public health initiatives that seek to improve, for instance, health literacy or reducing emergency hospital admissions through preventative primary care requires an understanding of the relative importance of factors that influence behaviour and decision making, and the interactions between these factors.

Project description:BackgroundSurrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.ObjectiveTo evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making.DesignCross-sectional survey.ParticipantsTwenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total).Main measuresPatients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios.Key resultsPatient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54).ConclusionFamily members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.

Project description:IntroductionThe aim of this project is to determine the patterns, decision-making processes and parental preferences associated with unscheduled paediatric healthcare utilisation in Ireland. Unscheduled paediatric healthcare is outpatient care provided within primary care settings by general practitioners (GPs), emergency departments (EDs) located in paediatric and general hospitals, and out-of-hours services provided by cooperatives of GPs operating on a regional basis. This project will take a multimethod approach to analysing the utilisation of unscheduled paediatric healthcare nationally within the context of a significant change to the provision of healthcare for young children in Ireland-the introduction of free at the point of delivery GP care for all children aged under 6.Methods and analysisA multimethod approach consisting of three work packages will be employed. Using patient-level data, work package 1 will describe patterns of attendance at primary care, out-of-hours medical services and at EDs. Applying a difference-in-difference methodology, the impact of the introduction of free GP care for children under 6 on attendance will be assessed. Work package 2 will explore geospatial trends of attendance at EDs, identifying disparities in ED attendance by local area and demographic characteristics. Work package 3 will employ two discrete choice experiments to examine parental preferences for unscheduled paediatric healthcare and GP decision making when referring a child to the ED. The insights gained by each of the work packages individually and collectively will inform evidence-based health policy for the organisation of paediatric care and resource allocation.Ethics and disseminationEthical approval for this research has been granted by University College Dublin, The Irish College of General Practitioners and the five participating hospitals. Results will be disseminated via publication in peer-reviewed journals, national and international conferences, and to relevant stakeholders and interest groups.

Project description:BackgroundMedical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood.Methods535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- 'predialysis' (group A), 'in-centre' haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses.Results458 complete responses were available. API items have high internal consistency in the study population (Cronbach's alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p < 0.05). In the age, education and study group adjusted multiple linear regression analysis, lower age, female gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis.ConclusionESRD patients prefer to receive information, but this does not always imply active involvement in decision-making. By understanding modifiable and non-modifiable factors which affect patient preferences for involvement in healthcare decision-making, health professionals may acknowledge the need to accommodate individual patient preferences to the extent determined by the individual patient factors.

Project description:A growing number of parents delay vaccinations or are deciding not to vaccinate their children altogether. This increases the risk of contracting vaccine-preventable diseases and disrupting herd immunity, and also impairs the trust in the capacities of health care systems to protect people. Vaccine hesitancy is related to a range of both psychological and demographic determinants, such as attitudes toward vaccinations, social norms, and trust in science. Our aim is to understand those determinants in parents, because they are a special group in this issue-they act as proxy decision makers for their children, who are unable to decide for themselves. The fact that deciding to vaccinate is a socially forced choice that concerns a child's health makes vaccine-related decisions highly important and involving for parents. This high involvement might lead to parents overemphasizing the potential side effects that they know to be vaccine-related, and by amplifying those, parents are more focused on the potential outcomes of vaccine-related decisions, which can yield specific pattern of the outcome bias. We propose two related studies to investigate factors which promote vaccine hesitancy, protective factors that determine parental vaccination decisions, and outcome bias in parental vaccination intentions. We will explore demographic and psychological factors, and test parental involvement related to vaccine hesitancy using an online battery in a correlation panel design study. The second study is an experimental study, in which we will investigate the moderating role of parents' high involvement in the specific domain of vaccination decision making. We expect that higher involvement among parents, compared to non-parents, will shape the pattern of the proneness to outcome bias. The studies will be conducted across eight countries in Europe and Asia (Finland, Germany, Hong Kong, the Netherlands, Serbia, Slovenia, Spain, and the United Kingdom), rendering findings that will aid with understanding the underlying mechanisms of vaccine hesitancy and paving the way for developing interventions custom-made for parents.

Project description:BackgroundPregnant women with prior venous thromboembolism (VTE) are at risk of recurrence. Low molecular weight heparin (LWMH) reduces the risk of pregnancy-related VTE. LMWH prophylaxis is, however, inconvenient, uncomfortable, costly, medicalizes pregnancy, and may be associated with increased risks of obstetrical bleeding. Further, there is uncertainty in the estimates of both the baseline risk of pregnancy-related recurrent VTE and the effects of antepartum LMWH prophylaxis. The values and treatment preferences of pregnant women, crucial when making recommendations for prophylaxis, are currently unknown. The objective of this study is to address this gap in knowledge.MethodsWe will perform a multi-center cross-sectional interview study in Canada, USA, Norway and Finland. The study population will consist of 100 women with a history of lower extremity deep vein thrombosis (DVT) or pulmonary embolism (PE), and who are either pregnant, planning pregnancy, or may in the future consider pregnancy (women between 18 and 45 years). We will exclude individuals who are on full dose anticoagulation or thromboprophylaxis, who have undergone surgical sterilization, or whose partners have undergone vasectomy. We will determine each participant's willingness to receive LMWH prophylaxis during pregnancy through direct choice exercises based on real life and hypothetical scenarios, preference-elicitation using a visual analog scale ("feeling thermometer"), and a probability trade-off exercise. The primary outcome will be the minimum reduction (threshold) in VTE risk at which women change from declining to accepting LMWH prophylaxis. We will explore possible determinants of this choice, including educational attainment, the characteristics of the women's prior VTE, and prior experience with LMWH. We will determine the utilities that women place on the burden of LMWH prophylaxis, pregnancy-related DVT, pregnancy-related PE and pregnancy-related hemorrhage. We will generate a "personalized decision analysis" using participants' utilities and their personalized risk of recurrent VTE as inputs to a decision analytic model. We will compare the personalized decision analysis to the participant's stated choice.DiscussionThe preferences of pregnant women at risk of VTE with respect to the use of antithrombotic therapy remain unexplored. This research will provide explicit, quantitative expressions of women's valuations of health states related to recurrent VTE and its prevention with LMWH. This information will be crucial for both guideline developers and for clinicians.

Dataset Information

Factors that influence family and parental preferences and decision making for unscheduled paediatric healthcare: a systematic review protocol.

Publications

Factors that influence family and parental preferences and decision making for unscheduled paediatric healthcare: a systematic review protocol.

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