Parental experience and decision-making for epilepsy surgery: A systematic review of qualitative and quantitative studies

2021 ◽  
Vol 123 ◽  
pp. 108263
Author(s):  
Debopam Samanta ◽  
Megan Leigh Hoyt ◽  
M. Scott Perry
2020 ◽  
Author(s):  
Piet van der Keylen ◽  
Johanna Tomandl ◽  
Katharina Wollmann ◽  
Ralph Möhler ◽  
Mario Sofroniou ◽  
...  

BACKGROUND Digitalization and the increasing availability of online information have changed the way in which information is searched for and retrieved by the public and by health professionals. The technical developments in the last two decades have transformed the methods of information retrieval. Although systematic evidence exists on the general information needs of specialists, and in particular, family physicians (FPs), there have been no recent systematic reviews to specifically address the needs of FPs and any barriers that may exist to accessing online health information. OBJECTIVE This review aims to provide an up-to-date perspective on the needs of FPs in searching, retrieving, and using online information. METHODS This systematic review of qualitative and quantitative studies searched a multitude of databases spanning the years 2000 to 2020 (search date January 2020). Studies that analyzed the online information needs of FPs, any barriers to the accessibility of information, and their information-seeking behaviors were included. Two researchers independently scrutinized titles and abstracts, analyzing full-text papers for their eligibility, the studies therein, and the data obtained from them. RESULTS The initial search yielded 4541 studies for initial title and abstract screening. Of the 144 studies that were found to be eligible for full-text screening, 41 were finally included. A total of 20 themes were developed and summarized into 5 main categories: <i>individual needs</i> of FPs before the search; <i>access needs</i>, including factors that would facilitate or hinder information retrieval; <i>quality needs</i> of the information to hand; <i>utilization needs</i> of the information available; and <i>implication needs</i> for everyday practice. CONCLUSIONS This review suggests that searching, accessing, and using online information, as well as any pre-existing needs, barriers, or demands, should not be perceived as separate entities but rather be regarded as a sequential process. Apart from accessing information and evaluating its quality, FPs expressed concerns regarding the applicability of this information to their everyday practice and its subsequent relevance to patient care. Future online information resources should cater to the needs of the primary care setting and seek to address the way in which such resources may be adapted to these specific requirements.


2021 ◽  
Vol 29 (Supplement_1) ◽  
pp. i36-i37
Author(s):  
R Jarrar ◽  
C Wilkinson ◽  
T Chadwick ◽  
J Lally ◽  
R Thomson ◽  
...  

Abstract Introduction Despite their efficacy in reducing stroke risk in patients with atrial fibrillation (AF), oral anticoagulants (OACs) remain under-prescribed [1]. Until recently, warfarin has been the dominant OAC. The introduction of direct oral anticoagulants (DOACs) led to changes in anticoagulant prescribing patterns, with an increase in OAC prescribing and a shift towards DOACs [2]. Treatment decisions for OACs are complicated, and require a discussion between clinicians and patients when deciding on a treatment [1]. Aim To investigate the main factors that influence initial and ongoing OAC prescribing decisions for patients with AF according to patient and health professional views. Methods A systematic review was conducted according to the Toolkit for Mixed-Methods Reviews, and was registered on PROSPERO: CRD42019145406. Medline, CINAHL, Scopus, EMBASE, Web of Knowledge and PsychInfo were searched in August, 2019. Primary qualitative and quantitative studies, published between 2009 and 2019, exploring patient and health professional perceptions, views and experiences of OACs in AF were included. McMaster critical appraisal tool for quantitative studies and Critical Appraisal Skills Programme (CASP) checklist for qualitative studies were used for quality assessment. The review followed a convergent integrated approach to data extraction and analysis, which involves extracting and analysing results of quantitative and qualitative studies at the same time using the same method. A data extraction form was adapted from Joanna-Briggs Institute (JBI) mixed-methods extraction form. Study author interpretation of quantitative data was summarised as qualitative statements which were coded together with primary qualitative data using NVIVO 12 software; codes were applied to each sentence in the findings, and were grouped into a hierarchical tree structure Results The systematic review included 62 papers (58 studies) discussing clinical and non-clinical factors influencing decisions to initiate OACs, the choice between warfarin and DOACs, and the choice between individual OACs. The balance of stroke and bleeding risks was the most influential when making the decision to initiate anticoagulation according to both patients and health professionals. Convenience-related factors, such as monitoring requirements, dosing regimens, and interactions impacted the choice between warfarin and DOACs, whereas, reversibility and dosing regimen influenced the choice between individual medications according to the views of both groups. Health professional specialty and years of experience affected all aspects of treatments, with specialists and senior clinicians more willing to initiate anticoagulation and choose DOACs. Even though health professionals often expressed that patient views were considered when deciding on a treatment, patients generally said that they followed their physician’s recommendations without questioning. Conclusion The review revealed similarities and differences across patient and professional views, experiences, and preferences of anticoagulation. The main discrepancies were related to the decision-making process, and whether patient views are being considered when prescribing. Combining quantitative and qualitative evidence helped explore a wide range of views of OAC and AF, however the review only included published research papers in English, which might have led to exclusion of valuable evidence. More research is needed to explore the factors driving the choice between OACs, especially the choice between individual DOACs. References 1. Noseworthy PA, Brito JP, Kunneman M, Hargraves IG, Zeballos-Palacios C, Montori VM, Ting HH. Shared decision-making in atrial fibrillation: navigating complex issues in partnership with the patient. Journal of Interventional Cardiac Electrophysiology. 2019;56(2):159–163. 2. Loo, S.Y., Dell'Aniello, S., Huiart, L. and Renoux, C. Trends in the prescription of novel oral anticoagulants in UK primary care. British Journal of Clinical Pharmacology. 2017; 83(9): 2096–2106.


2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Marc Rocholl ◽  
Michaela Ludewig ◽  
Carola Brakemeier ◽  
Swen Malte John ◽  
Annika Wilke

Abstract Background Eczematous skin diseases, e.g., atopic dermatitis or contact dermatitis, are associated with a high disease burden, a significant impact on quality of life and a higher risk for anxiety and depression. Therefore, coping strategies are of interest. In order to understand coping processes, it is necessary to examine the patients’ perspectives on their illness. The aim of this systematic mixed studies review is to investigate the illness perceptions of patients with eczematous skin diseases to get a better understanding of their coping processes. Methods We performed a systematic literature search in PubMed, The Cochrane Library, PsycInfo, PSYNDEX, CINAHL, Web of Science, and Scopus until February 20, 2019. Both qualitative and quantitative studies were included in the review. Two independent reviewers conducted data extraction and carried out a narrative synthesis. We assessed study quality with the Mixed Methods Appraisal Tool. Results Three qualitative and four quantitative studies were included in the systematic review. We found different methodological approaches for investigating illness perceptions: guided interviews, focus group interviews as well as standardized questionnaires, e.g., the Brief Illness Perception Questionnaire. All studies report suspected causes of the skin disease, such as endogenous and exogenous causes (namely, psychological or occupational factors). We found long timeline beliefs as well as various perceived and experienced social, economic, and psychological consequences. Our analysis reveals complex emotional representations in patients with eczematous skin diseases, in particular impairment of emotional well-being, and feelings of shame or helplessness. Qualitative and quantitative data were predominantly complementary and convergent. Conclusion Patients with eczematous skin diseases have complex illness representations regarding their disease. These representations interrelate with the coping behavior of patients. Therefore, medical professionals should consider them for counseling and treatment. Systematic review registration PROSPERO 2018 CRD42018109217.


2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
L Orton ◽  
R M Anderson de Cuevas

Abstract Background Roma populations experience significantly poorer health than majority populations. Health outcomes are often worse than for others in similar social positions, suggesting differences are not simply the effect of poverty. Roma women are thought to be worst affected. However, data pertaining to the multiple social inequalities affecting Roma populations, their interaction and cumulative effect on health over time, have yet to be synthesised. Methods We searched four bibliographic databases (MEDLINE, Science Citation Index, Social Sciences Citation Index and Scopus), screened reference lists, consulted key informants and searched organisational websites for studies providing empirical evidence on more than one determinant of health for Roma populations in Europe. Two reviewers carried out screening, data extraction, quality appraisal and performed a narrative synthesis. Results From 2,043 bibliographic records, 37 studies met our inclusion criteria. The median number of influencing factors explored through qualitative and quantitative methodologies was 2 (range 1 - 5) and 3 (range 1 - 11), respectively. Quantitative studies focussed on poverty (10 studies) and other indicators of socio-economic status including education (13 studies), housing (9 studies) and employment (9 studies). Very few studies unpicked interactive effects instead testing each factor’s contribution to poor health independently. Qualitative studies tended to explore “Roma culture” (11 studies) and the impact of discrimination/racism on health behaviour (10 studies). There is a lack of gender-disaggregated data and little analysis of the impact of social policy on the health of Roma populations. Conclusions Evidence for associations between determinants and health outcomes among European Roma populations is patchy. Research needs to pay more attention to the health impact of social policies that have the potential to reinforce (as well as mitigate) the exclusion of Roma populations. Key messages This systematic review critically analyses the state and shape of research evidence on the multiple interacting axes of inequality that contribute to poor health among Europe’s Roma populations. There is a divergence between qualitative and quantitative studies, with the former providing some evidence on socio-economic status and the latter exploring aspects of culture and discrimination.


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