Out of sight,out of mind? A qualitative study of patients’ perspectives on cross-border healthcare in a European border region

ObjectiveTo improve our understanding of patients’ needs in cross-border healthcare, with a specific focus on handover.MethodsIn this qualitative study, we conducted narrative interviews with 8 patients who had experienced cross-border healthcare, including handover. Based on an inductive analysis, we crafted stories representing participants’ perspectives. Crafted stories attend to the personal character of patients’ experiences.ResultsWe crafted 3 stories relating patients’ cross-border healthcare pathways. We identified 3 recurring issues in these stories: (1) Patient involvement in the decision-making process regarding their healthcare; (2) Communication with their healthcare providers; and (3) Information throughout the healthcare process.ConclusionThe said issues, albeit no novelty in healthcare, seem to be amplified by cross-border barriers, such as system, language, and cultural differences. To empower patients to be involved in their own healthcare process, these issues should become a topic of conversation between patients and healthcare professionals.Practice implicationsThe patient stories in this article could help raise awareness among professionals and patients about the issues patients face in cross-border healthcare. Awareness is a first step in overcoming these issues.     

Australians’ perspectives on support around use of personal genomic testing: Findings from the Genioz study

Personal genomic testing using direct-to-consumer and consumer-directed models, with or without involvement of healthcare providers, is increasing internationally, including in Australia. This study forms a sub-set of the Genioz study – Genomics: National Insights of Australians. We aimed to explore Australians’ experiences with these types of tests, especially online DNA tests, and their views regarding whom they would seek support from around understanding test results. The study used a mixed methods approach, employing an exploratory quantitative online survey and follow-up qualitative semi-structured interviews. Between May 2016 and May 2017, 2841 Australians responded to the survey. Interviews were conducted with 63 purposively sampled respondents, including 45 who had a genetic test and 18 who had not. Of 571 respondents who had any type of genetic test, 322 had a personal genomic test using criteria defined by the researchers. Testing for ancestry/genealogy was the most common, reported by 267 participants, reflecting the increased advertising of these tests in Australia. Some respondents described downloading their raw data for further interpretation through third party websites for genealogical as well as health related information. Carrier testing, testing for serious and preventable conditions and nutrition and/or wellness were the most common health related tests reported by respondents. Participants generally preferred to seek support from general practitioners (GPs), medical specialists with relevant expertise and independent genetics specialists, although another important preference for non-health information was online forums and networks. There was less preference for seeking support from employees associated with the testing companies. Generally, of those who had a health related PGT, the most common actions were seeking medical advice or doing nothing with the information, while more of those who had a personal genomic test for nutrition and/or wellness sought advice from complementary/alternative health practitioners (eg naturopaths) and integrative GPs, and 60% reported they had changed their diet. As awareness of personal genomic testing increases, publicly funded clinical genetics services may be less inclined to discuss results from personal genomic testing. Genetic counsellors could play an important role in providing this support, both pre-test and post-test, through opportunities for private practice but independent from testing companies.     

‘A heartbeat moment’: qualitative study of GP views of patients bringing health information from the internet to a consultation

Background

Government policy is to encourage self-help among patients. The internet is increasingly being used for health information. The literature on the role of the internet in the doctor–patient consultation remains sparse.

Aim

To determine the perceived responses of GPs to internet-informed patients in consultations and the strategies GPs use for dealing with information from the internet being brought into consultations.

Design of study

A qualitative study design was used, with semi-structured interviews.

Setting

GPs based in North Central London.

Method

Analysis was conducted by a multidisciplinary team of researchers. Participants were 11 GPs: five partners, three locums, and three salaried doctors; seven were white, three were Asian, and one was of Chinese origin. The median year of General Medical Council (GMC) registration was 1989. There were six women and five men; five participants worked in training practices.

Results

GPs experienced considerable anxiety in response to patients bringing information from the internet to a consultation but were able to resolve this anxiety. The study participants learned to distance themselves from their emotional response, and used cognitive and behavioural techniques to assist them in responding appropriately to patients. These techniques included buying time in a consultation, learning from previous consultations, and using the internet as an ally, by directing patients to particular websites. The importance for doctors of feeling valued by patients was apparent, as was the effect of the prior doctor–patient relationship.

Conclusion

GPs interviewed used sophisticated mechanisms for dealing with their emotions. GPs struggling with internet-informed patients can use the mechanisms described to alleviate the difficulties.     

Patients’ perspectives on shared decision making in secondary mental healthcare in Taiwan: A qualitative study

ObjectiveThe aim of this study is to explore patient perspectives on shared decision making in secondary mental healthcare in Taiwan.MethodsQualitative semi-structured interviews were used to explore patient perspectives on shared decision making in secondary mental healthcare in Taiwan. Individual semi-structured interviews were conducted from July to August 2017 with a purposive sample of twenty patients using halfway houses. Data were analysed using thematic analysis.ResultsAnalysis of the interviews identified two themes: barriers to shared decision making; facilitators of shared decision making. Patients perceived that they were not involved in decision making due to: the professional status of health professionals; negative perception of making decisions; and limited time resources. However, patients reported a desire to be involved and felt sufficient information exchange would be a necessary step towards collaboration/sharing decisions about treatment with clinicians.ConclusionThe findings provided an understanding of significant barriers to and facilitators of implementing shared decision making to aid further professional training and the development of national policies.Practice implicationsThe findings could be the basis for developing effective strategies to overcome barriers to shared decision making and improve the process quality of delivering shared decision making.     

“It’s about our bodies… we have the right to know this stuff”: A qualitative focus group study on Australian women’s perspectives on breast density

ObjectiveThis study aimed to explore Australian women’s current knowledge, perspectives and attitudes about breast density (BD); and information needs to inform effective evidence-based communication strategies.MethodsFourteen online focus group sessions with a total of 78 women in New South Wales and Queensland, Australia aged 40–74 years without a personal diagnosis of breast cancer were conducted. Audio-recorded data was transcribed and analysed thematically.ResultsWomen had a very limited knowledge of BD. Overall, women expressed a preference for more frequent mammograms and/or supplemental screening should they be told they had dense breasts, despite being presented with information on potential downsides of additional testing. The majority of women were supportive of the notion of BD notification, often suggesting they had a ‘right to know’ and they would prefer to be educated and informed about it.ConclusionThe potential of being informed and notified of BD is found to be of interest and importance to Australian women of breast screening age despite lacking current knowledge.Practice ImplicationsThis study highlights that policy makers and screening services need to consider how to weigh up these views and preferences of women with current evidence surrounding BD in deciding about implementing population-based BD notification.     

Transitioning from ‘blood’ safety to ‘transfusion’ safety: addressing the single biggest risk of transfusion

Transfusion errors occur at all points in the transfusion chain, often occurring at multiple points in the transfusion process for the same patient. Such events have been reported to national haemovigilance programs in almost all countries, over and over again. An incredible number of safety changes have been implemented to improve blood safety, including but not limited to: nucleic acid testing for HIV/HBV/HCV, bacterial culture for platelet concentrates, use of male-only plasma, and the introduction of pathogen reduction strategies. By contrast, very little momentum has developed behind transfusion safety, in hope of improving the safe delivery of blood to patients. This article will review the interventions that have been studied by transfusion medicine services in attempt to improve transfusion safety at every link in the transfusion chain. The most important and indispensable safety step is the introduction of an error tracking system. Such a system should capture all deviations from standard operating procedures, including near-misses that are captured before the blood product is issued. Near-misses are 300-fold more common and represent latent safety concerns requiring urgent attention. The system should be anonymous to ensure that there is no barrier to reporting and no-fault to recognize that the vast majority of errors are due to latent system errors. The errors should be coded by type and location to allow for the ability to query the error database for the purposes of benchmarking and tracking and trending after system changes. Such a system will allow hospital transfusion services to focus their initiatives at the steps in the transfusion chain most in need of repair at their institution. The system changes that have been studied include: confirmatory group testing, computerized physician order entry, prospective screening of transfusion orders before/after issue, controlled patient registration, regional blood bank information systems, positive patient identification at time of sample collection and the start of transfusion (using barcode or RFID technology), controlled release refrigeration devices, patient involvement in the transfusion process, and healthcare professional education. For each area, the specific technologies or examples will be detailed, the reports from the literature will be reviewed, and the obstacles to implementation will be discussed. Now that blood safety has been assured, we need to re-focus our attentions on the single biggest threat to patients: errors in the transfusion chain at the hospital level. We need to ensure that patients get blood only when required, that they get the correct product of the correct blood group, at the right dose, at the appropriate infusion rate, to the correct patient, at the right time. We need to take a rigorous scientific approach to solving transfusion safety to ensure that each process change is properly tested and validated to verify that each newly introduced process is safe and effective.     

Customization of information on adverse drug reactions according to patients’ needs – A qualitative study

ObjectivesInterviewing patients, we evaluated how information on adverse drug reactions (ADRs) could be customized to best meet the patients’ expectations.MethodsRecruitment followed an approach of variation sampling. Data collection was paper-based (questionnaires) and through semi-structured interviews. Participants were asked to evaluate different ADR characteristics (e.g. frequency, seriousness, lay perceptibility, and management strategies) as suitable filters to customize information and subsequently how they would apply these to meet their information wishes. Their wishes were then verified by presenting them accordingly customized information.ResultsForty-one participants (mean age 44.9 ± 20.1 years) were recruited. Overall, information needs were highly diverse. Therefore, it was not possible to identify one single characteristic that was generally considered suitable. Initially, participants often wished for a maximum of information (e.g. ‘all’ ADRs). The actual presentation of comprehensive information often surprised the recipients and consequently changed the desired information.ConclusionsBy simply supplying patients with ADR information they request, it is not possible to guarantee their satisfaction with such information and their understanding of it; initial wishes might be uttered without actually comprehending their practical meaning.Practice ImplicationsIt is crucial to precisely assess, question, and verify information wishes in order to customize ADR information successfully.     

Exploring cancer patients’, caregivers’, and clinicians’ utilisation and experiences of telehealth services during COVID-19: A qualitative study

ObjectivesThe COVID-19 pandemic has significantly impacted oncology. With pandemic restrictions limiting close contact between individuals, telehealth (the use of teleconferencing/videoconferencing to conduct real-time medical consultations) has been increasingly utilised. This qualitative study aimed to explore adult cancer patient, caregiver, and clinician (doctor, nurse, allied health) telehealth experiences during COVID-19 in urban and rural Australian settings and identify potential enablers and barriers to sustained telehealth implementation.MethodsEnglish-speaking participants completed semi-structured interviews regarding their telehealth experiences since March 2020. Interviews ceased when data saturation occurred. Iterative thematic analysis was conducted using NVivo 12 Pro.ResultsThirty-four interviews (clinician=14, patient=13, caregiver=7) were conducted from April to August 2021. Analysis generated seven themes relating to telehealth use: 1) Acceptability as a form of consultation, 2) Impacts on healthcare provision, 3) Communication & relationships, 4) Efficient form of consultation, 5) Comfort of conducting telehealth in different environments, 6) Technological barriers and 7) Future preferences.ConclusionsThe rapid uptake of telehealth during the pandemic has mostly been well-received, and telehealth can be appropriately used in oncology.Practice implicationsBarriers including providing appropriate facilities, technology, and telehealth training; and selecting appropriate patients must be addressed to enable sustained telehealth use in future cancer care.     

Nurses’ perceptions of pain management for older-patients in the Emergency Department: A qualitative study

Objectives1) Identify themes arising from nurses’ perceptions of assessing older-patients’ pain; 2) use themes to guide development of optimal interventions to improve quality of pain assessment in the emergency department (ED).MethodsNurse interviews (n = 20) were conducted until theme saturation. They were transcribed, coded, and analyzed using qualitative methodology.ResultsTwo major themes—nurse ‘challenges’ and ‘strategies’ to overcome challenges, and their subthemes − classified as ‘patient-related’ or ‘system-related,’ were salient in nurses’ perceptions. Strategies nurses reported for managing challenges were based in their own professional lived experiences.Discussion and conclusionA 2 × 2 framework was developed to conceptualize challenges, strategies, subthemes and their classifications, yielding 4 typologies comprising challenge types matched with appropriate strategy types. While emergent challenges and strategies are corroborated in the literature, the present study is the first to develop a scheme of typologies beneficial for guiding the development of optimal interventions to improve the quality of assessing pain in older-patients.Practice implicationsThe typology framework can guide the development of pain assessment tools and the needed combinations for assessing multidimensional pain in older-patients. Using the present findings, a new clinical intervention was shown to significantly improve pain management for older-patients in the ED.     

Facilitators and barriers to clinicians’ use of COPD action plans in self-management support: A qualitative study

ObjectiveWritten action plans for patients with chronic obstructive pulmonary disease (COPD) aim at early recognition of exacerbations and self-initiation of interventions. Previous research suggest underuse of COPD action plans. We wanted to 1) examine which factors clinicians in specialist healthcare perceived as influencing clinicians’ use of written action plans in COPD-self management support and 2) propose a framework for understanding the factors affecting clinicians’ use of action plans in routine practice.MethodsWe performed a theory-driven retrospective qualitative study. Documentary data were collected to describe the COPD action plan in context. In-depth interviews with clinicians (n = 8) were carried out. Interview data were thematically analyzed, using a predetermined model for understanding behavior.ResultsOur study revealed that a number of factors influenced clinicians’ use of action plans, including their capabilities (knowledge and skills to identify “the right patient” and to individualize the plan template) and motivations (beliefs, reinforcements, and emotions s.a. frustration, fear, and distrust), together with organizational and social opportunities (resources, patient, and GP preferences).ConclusionA multilevel understanding of factors that affect clinicians’ use of action plans in self-management support is needed.Practice implicationThe proposed framework can be used to guide future initiatives to promote targeted self-management support.     

Does the achievement of medical identity limit the ability of primary care practitioners to be patient-centred?: A qualitative study

OBJECTIVE: To explore primary care practitioners approach to and management of menstrual disorders using a sociological perspective. METHODS: Semi-structured interviews of primary care practitioners with an iterative approach to recruitment and analysis informed by grounded theory. RESULTS: Two broad approaches to patient care were described-a biomedical approach, which concentrated on medical history taking and the search for disease, and a patient-as-person approach where a patient's individual ideas and concerns were elicited. Practitioners believed they had a role in integrating these approaches. Activities intrinsic to the biomedical approach such as the performance of examinations, the ordering of tests and making decisions about biomedical aspects of care were however not available for shared decision-making. The exercise of these decisions by medical practitioners was necessary for them to achieve their professional identity. CONCLUSION: While practitioners accepted the ideology of patient-centred care the biomedical approach had the advantage of providing practitioners with a professional identity, which protected their status in relation to patients and colleagues. PRACTICE IMPLICATIONS: The adoption of shared decision-making by medically qualified primary care practitioners is limited by practitioners need to achieve their medical identity. At present, this identity does not involve significant sharing of power and responsibility. A shift in perception of medical identity is required before more shared decision-making is seen in practice.