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AnteayerBMJ Open

Information needs on type 1 diabetes mellitus (T1DM) and its management in children and adolescents: a qualitative study

Por: Muhammed Elamin · S. · Muhamad Arshad · N. F. · Md Redzuan · A. · Abdul Aziz · S. A. · Hong · J. · Chua · X. Y. · Bin-Abbas · B. S. · Alsagheir · A. · Mohamed Shah · N.
Objective

The objective of this study is to explore the information needs related to insulin therapy in children and adolescents with type 1 diabetes mellitus (T1DM) from the children’s perspectives as well as their caregivers.

Design

Qualitative study; semistructured interviews. To identify emerging themes relating to information needs, open coding and thematic analysis were employed.

Setting

Participants were recruited from a tertiary care children’s hospital in Kuala Lumpur, Malaysia and a specialist hospital in Riyadh, Saudi Arabia.

Participants

Thirty one children with a mean age of 11.5 years (SD=1.9) and their caregivers were interviewed. Seventeen participants were from Malaysia and 14 were from Saudi Arabia.

Results

Four themes of information emerged from the interviews, including information related to (1) hypoglycaemia and hyperglycaemia, (2) insulin therapy, (3) injection technique and (4) other information needs pertaining to continuous glucose monitoring, access to peer groups and future advances in insulin therapy.

Conclusion

This study provided valuable insights into the information needs related to T1DM and insulin therapy among children and adolescents with T1DM that should be considered by stakeholders in the development of age-appropriate education materials. Such materials will assist children and adolescents to better manage their life-long T1DM condition from adolescence until adulthood.

Study protocol for a cross-sectional online survey investigating patient preferences and experiences of waiting for elective cardiac surgery

Por: Russo · M. · Watson · K. · Richards · K. · Olive · R. R. · Krausova · B. · Kumar · R. · Burridge · J. · Goulding · L. · Chua · K.-C. · Hardy · D. · Vassilios · A. · Kamran · B. · Bhudia · S. · Alia · N. · Habib · K. · Sevdalis · N. · Petrou · M.
Introduction

Being on a waiting list for elective (planned) cardiac surgery can be physically and psychologically challenging for patients. Research suggests that stress associated with waiting for surgery is dependent on different individual and contextual factors. However, most data on patients’ experiences of waiting for surgery and preferences for waiting list management derives from non-cardiac clinical populations. The aim of the current study is to explore patients’ experiences of being on a waiting list for elective cardiac surgery, and their views on how the waiting experience could be improved in the future. This work will inform the patient management strategy during the waiting period for surgery across the four major hospitals in London directly involved in this study, and potentially beyond by transferring learning to other services.

Methods and analysis

This is a mixed-methods study that will collect quantitative and qualitative data using a cross-sectional online survey. Patients who are on waiting lists for elective surgery across four major cardiac surgery departments in London hospitals, and are at least 18 years old, will be invited by their healthcare team via text message or letter to complete the survey. The target sample size of non-randomly selected participants will be 268. Bivariable and multivariable regression models will be used to assess associations between survey items measuring the impact of the cardiac condition on specific life domains (eg, daily activities, social and family relationships, hobbies, sexual life), anxiety and depression symptoms as measured by the Patient Health Questionnaire-4 and survey items evaluating experiences of health services. Data on experience and preferences for improvements to the waiting experience will be analysed with qualitative content analysis using an inductive approach.

Ethics and dissemination

This study was reviewed and granted ethical approval by the East of England—East Cambridge Research Ethics Committee. Findings from this study will be disseminated through peer-reviewed journals, a research website and social media and with an online event engaging patients, members of the public, healthcare professionals and other relevant stakeholders.

Trial registration numb

NCT05996640

Experiences and perspectives related to shared decision-making among outpatients with degenerative joint disease in Taiwan: a qualitative study

Por: Chuang · Y.-H. · Wang · C.-C. · Hsiao · C.-Y. · Lu · C.-Y. · Wu · J.-C. · Hou · W.-H.
Objectives

Various treatment options are available for degenerative joint disease (DJD). During clinical visits, patients and clinicians collaboratively make decisions regarding the optimal treatment for DJD; this is the essence of shared decision-making (SDM). Here, we collated and assessed the SDM-related experiences and perspectives of outpatients with DJD in Taiwan.

Design

In-depth interviews and thematic analysis.

Setting

Primary care clinics of a regional teaching hospital in Taiwan, October 2021–May 2022.

Participants

21 outpatients with at least three visits for DJD and who were aware of SDM.

Results

Four main themes emerged in this study: first, equipping themselves with knowledge: outpatients obtained disease-related and treatment-related knowledge in various ways—seeking relevant information online, discussing with family and friends, learning from their own experiences or learning from professionals. Second, shared or not shared: physicians had different patterns for communicating with patients, particularly when demonstrating authority, performing mutual discussion, respecting patient preferences or responding perfunctorily. Third, seldom saying no to physician-prescribed treatment plans during clinical visits: most patients respected physicians’ professionalism; however, some patients rejected physicians’ recommendations indirectly, whereas some responded depending on their disease prognosis. Fourth, whose call?—participants decided to accept or reject a treatment plan independently or by discussing it with their families or by obeying their physicians’ recommendations.

Conclusions

In general, patients with DJD sought reliable medical information from various sources before visiting doctors; however, when having a conversation with patients, physicians dominated the discussion on treatment options. The patient–physician interaction dynamics during the SDM process determined the final medical decision, which was in accordance with either patients’ original autonomy or physicians’ recommendations. To alleviate medical paternalism and physician dominance, patients should be empowered to engage in medical decision-making and share their opinions or concerns with their physicians. Family members should also be included in SDM.

'The burden of wanting to make it right: thematic analysis of semistructured interviews to explore experiences of planning for crisis standards of care and ventilator allocation during the COVID-19 pandemic in the USA

Por: MacMartin · M. · Zeng · A. · Chelen · J. · Barnato · A. · Chuang · E.
Objectives

The COVID-19 pandemic prompted planning for clinical surges and associated resource shortages, particularly of equipment such as ventilators. We sought to examine the experience of the healthcare professionals who created policies for crisis standards of care, and allocation of ventilators in the event of shortage.

Design

To that end, we conducted semistructured interviews with healthcare professionals in the USA involved in institutional planning for resource shortages in the setting of the COVID-19 pandemic.

Setting

USA.

Participants

We conducted 25 interviews between May and July 2021. Half of the respondents were female (48%), many from Northeastern institutions (52%), and most practised in academic institutions (92%).

Results

Many (64%) respondents reported that their institution had an approved policy to guide ventilator allocation in the event of a shortage. We identified one overarching theme: the work of planning for resource shortages imposed a psychological burden on many planners. We identified four subthemes that influenced that burden: impact of leadership, institutional variation in process and policies, faith in the policies and future directions.

Conclusions

Improved leadership strategies and cross-institutional collaboration can reduce the psychological burden of planning and facilitate updating plans in anticipation of future shortages.

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