Patients as Partners: A Qualitative Study of Patients’ Engagement in Their Health Care

To advocate for patients to be more actively involved with the healthcare services they receive, particularly patients living with chronic illness, the Faculty of Medicine of the University of Montreal and its affiliated hospitals developed the Patients as Partners concept where the patient is considered a full-fledged partner of the health care delivery team and the patient’s experiential knowledge is recognized. This study aims to show how patients view their engagement with healthcare professionals regarding their direct care. Using theoretical sampling, 16 semi-structured interviews were conducted with patients with chronic illness who were familiar with the concept of Patients as Partners. Data analysis followed a constructivist grounded theory approach. Patients describe themselves as proactively engaging in three types of practice, regardless of health professionals’ openness to their role as partners. The first is a process of continuous learning that allows them to acquire experiential knowledge about their health, as well as scientific information and technical know-how. The second involves their assessment of the healthcare they receive, in terms of its quality and how it aligns with their personal preferences. It includes their assessment of the quality of their relationship with the health professional and of the latter’s scientific knowledge and technical know-how. The third type, adaptation practices, builds on patients’ learning and assessments to compensate for and adapt to what has been perceived as optimal or non-optimal health or healthcare circumstances. Patients appear to play a more active and less docile role in their own direct care than suggested so far in the literature, regardless of the degree of reciprocity of the partnership or the degree to which the health professional seeks to encourage patient engagement.     

Staff Nurses’ Perceptions and Experiences about Structural Empowerment: A Qualitative Phenomenological Study

The aim of the study reported in this article was to investigate staff nurses’ perceptions and experiences about structural empowerment and perceptions regarding the extent to which structural empowerment supports safe quality patient care. To address the complex needs of patients, staff nurse involvement in clinical and organizational decision-making processes within interdisciplinary care settings is crucial. A qualitative study was conducted using individual semi-structured interviews of 11 staff nurses assigned to medical or surgical units in a 600-bed university hospital in Belgium. During the study period, the hospital was going through an organizational transformation process to move from a classic hierarchical and departmental organizational structure to one that was flat and interdisciplinary. Staff nurses reported experiencing structural empowerment and they were willing to be involved in decision-making processes primarily about patient care within the context of their practice unit. However, participants were not always fully aware of the challenges and the effect of empowerment on their daily practice, the quality of care and patient safety. Ongoing hospital change initiatives supported staff nurses’ involvement in decision-making processes for certain matters but for some decisions, a classic hierarchical and departmental process still remained. Nurses perceived relatively high work demands and at times viewed empowerment as presenting additional. Staff nurses recognized the opportunities structural empowerment provided within their daily practice. Nurse managers and unit climate were seen as crucial for success while lack of time and perceived work demands were viewed as barriers to empowerment.     

LGBT+ Individuals’ Perceptions of Healthcare Services in Turkey: A Cross-sectional Qualitative Study

When accessing healthcare services, LGBT+ individuals are often exposed to segregating and marginalizing discourses. Knowledge about how such experiences are reflected in the moral world of LGBT+ individuals living in Turkey is limited. This study examined LGBT+ individuals’ lived experiences when utilizing healthcare services. The findings are discussed in terms of moral discourses related to LGBT+ individuals’ gender identity and sexual orientation. A qualitative field study was conducted using semi-structured interviews with fifty-five LGBT+ individuals from Turkish cities who were in contact with various non-governmental organizations that conduct studies on gender identity and sexual orientation. A questionnaire was administered with items on participants’ demographic information, experiences, behavioural patterns, and knowledge regarding healthcare services. The data were analysed thematically. The findings were evaluated within the framework of “access to healthcare service” theme related to “healthcare service demand” context. Additionally, the “interaction with physicians” theme was addressed in the context of “physician–patient/counselee relationship.” LGBT+ individuals state that they are exposed to stigmatizing and segregating discourses by healthcare professionals, which might pose an obstacle for adaptive health-seeking behaviours. These results suggest that physicians’ professional approach has a considerable influence on LGBT+ individuals’ capacity for utilizing healthcare services.     

Students’ Perceptions of Peer-Organized Extra-Curricular Research Course during Medical School: A Qualitative Study

Early integration of research education into medical curricula is crucial for evidence-based practice. Yet, many medical students are graduating with no research experience due to the lack of such integration in their medical school programs. The purpose of this study was to explore the impact of a peer-organized, extra-curricular research methodology course on the attitudes of medical students towards research and future academic careers. Twenty one medical students who participated in a peer-organized research course were enrolled in three focus group discussions to explore their experiences, perceptions and attitudes towards research after the course. Discussions were conducted using a semi-structured interview guide, and were transcribed and thematically analyzed for major and minor themes identification. Our findings indicate that students’ perceptions of research changed after the course from being difficult initially to becoming possible. Participants felt that their research skills and critical thinking were enhanced and that they would develop research proposals and abstracts successfully. Students praised the peer-assisted teaching approach as being successful in enhancing the learning environment and filling the curricular gap. In conclusion, peer-organized extra-curricular research courses may be a useful option to promote research interest and skills of medical students when gaps in research education in medical curricula exist.     

Endocrinologists’ Experiences With Telehealth: A Qualitative Study With Implications for Promoting Sustained Use

ObjectiveEndocrinology is well-suited to telehealth, with high rates of use and known benefits. Clinician attitudes toward telehealth will be critical to ensuring sustained use after the pandemic. We examined endocrinologists’ experiences with synchronous telehealth to identify factors affecting experiences with and acceptance of the technology.MethodsWe conducted qualitative interviews and directed-content analysis with a purposive sample of 26 U.S. endocrinologists. Factors affecting clinicians’ experiences were mapped to the human-organization-technology fit (HOT-fit) framework.ResultsWe found that clinicians’ experiences with synchronous telehealth were influenced by: (1) Clinician factors: Clinicians welcomed telehealth but expressed concerns about patient interest, rapport building, and clinical appropriateness, desiring more data to support its use. Many clinicians feared missing clinical findings on virtual examination, despite no such personal experiences. Effects on professional and personal life contributed to satisfaction, through increased flexibility but also increased workload. (2) Organizational factors: Departmental meetings and trainings supported clinicians’ technical, logistical, and clinical needs, reducing resistance to telehealth use. Shifting staff responsibilities in clinical workflows improved clinicians’ experiences and supported telehealth use, while mixed telehealth and in-person schedules impeded workflow. (3) Technology factors: Most clinicians preferred video visits to telephone. Usability and reliability of telehealth platforms, integration of patient self-monitoring data, and availability of IT support were crucial to a positive experience.ConclusionClinician acceptance of telehealth is influenced by clinician, organizational, and technology factors that can be leveraged to improve buy-in. Organizational leaders’ attention to addressing these factors will be critical to support endocrinologists’ continued provision of telehealth for their patients.     

Patients’ Knowledge,Attitudes, Behaviour and Health Care Experiences on the Prevention,Detection, Management and Control of Hypertension in Colombia: A Qualitative Study

Hypertension is a leading cause of premature death worldwide and the most important modifiable risk factor for cardiovascular disease. Effective screening programs, communication with patients, regular monitoring, and adherence to treatment are essential to successful management but may be challenging in health systems facing resource constraints. This qualitative study explored patients’ knowledge, attitudes, behaviour and health care seeking experiences in relation to detection, treatment and control of hypertension in Colombia. We conducted in-depth interviews and focus group discussions with 26 individuals with hypertension and 4 family members in two regions. Few participants were aware of ways to prevent high blood pressure. Once diagnosed, most reported taking medication but had little information about their condition and had a poor understanding of their treatment regime. The desire for good communication and a trusting relationship with the doctor emerged as key themes in promoting adherence to medication and regular attendance at medical appointments. Barriers to accessing treatment included co-payments for medication; costs of transport to health care facilities; unavailability of drugs; and poor access to specialist care. Some patients overcame these barriers with support from social networks, family members and neighbours. However, those who lacked such support, experienced loneliness and struggled to access health care services. The health insurance scheme was frequently described as administratively confusing and those accessing the state subsidized system believed that the treatment was inferior to that provided under the compulsory contributory system. Measures that should be addressed to improve hypertension management in Colombia include better communication between health care professionals and patients, measures to improve understanding of the importance of adherence to treatment, reduction of co-payments and transport costs, and easier access to care, especially in rural areas.     

Patients’ Experiences of Cancer Diagnosis as a Result of an Emergency Presentation: A Qualitative Study

Introduction

Cancers diagnosed following visits to emergency departments (ED) or emergency admissions (emergency presentations) are associated with poor survival and may result from preventable diagnostic delay. To improve outcomes for these patients, a better understanding is needed about how emergency presentations arise. This study sought to capture patients'' experiences of this diagnostic pathway in the English NHS.

Methods

Eligible patients were identified in a service evaluation of emergency presentations and invited to participate. Interviews, using an open-ended biographical structure, captured participants'' experiences of healthcare services before diagnosis and were analysed thematically, informed by the Walter model of Pathways to Treatment and NICE guidance in an iterative process.

Results

Twenty-seven interviews were conducted. Three typologies were identified: A: Rapid investigation and diagnosis, and B: Repeated cycles of healthcare seeking and appraisal without resolution, with two variants where B1 appears consistent with guidance and B2 has evidence that management was not consistent with guidance. Most patients’ (23/27) experiences fitted types B1 and B2. Potentially avoidable breakdowns in diagnostic pathways caused delays when patients were conflicted by escalating symptoms and a benign diagnosis given earlier by doctors. ED was sometimes used as a conduit to rapid testing by primary care clinicians, although this pathway was not always successful.

Conclusions

This study draws on patients'' experiences of their diagnosis to provide novel insights into how emergency presentations arise. Through these typologies, we show that the typical experience of patients diagnosed through an emergency presentation diverges significantly from normative pathways even when there is no evidence of serious service failures. Consultations were not a conduit to diagnosis when they inhibited patients’ capacity to appraise their own symptoms appropriately and when they resulted in a reluctance to seek further healthcare.

Recommendations

The findings also point to potentially avoidable breakdowns in the diagnostic process. In particular, to encourage patients to return to the GP if symptoms escalate, a stronger emphasis is needed on diagnostic uncertainty in discussions between patients and doctors in both primary and secondary care. To improve appropriate access to rapid investigations, systems are needed for primary care to communicate directly with secondary care at the time of referral.     

Web-Based Training for Primary Healthcare Workers in Rural China: A Qualitative Exploration of Stakeholders’ Perceptions

BackgroundEquitable access to basic public health services is a priority in China. However, primary healthcare workers’ competence to deliver public health services is relatively poor because they lack professional training. Since the availability of web-based training has increased in China, the current study explored stakeholders’ perceptions of a web-based training program on basic public health services to understand their thoughts, experiences, and attitudes about it.MethodsSix focus group discussions with primary healthcare workers and three with directors of township hospitals, county-level Health Bureaus, and county-level Centers for Disease Control and Prevention were conducted in Yichang City during 2013. Semi-structured topic guides were used to facilitate qualitative data collection. Audio recordings of the sessions were transcribed verbatim and theme analysis was performed.ResultsMost of the study’s participants, especially the village doctors, had insufficient knowledge of basic public health services. The existing training program for primary healthcare workers consisted of ineffective traditional face-to-face sessions and often posed accessibility problems for the trainees. Most of the study’s participants had a positive attitude about web-based learning and expressed a strong desire to receive this novel training approach because of its flexibility and convenience. The perceived barriers to utilizing the web-based training method included poor computer literacy, lack of personal interaction, inadequate infrastructure, and lack of time and motivation. The facilitators of this approach included the training content applicability, the user-friendly and interactive learning format, and policy support.ConclusionsWeb-based training on basic public health services is a promising option in rural China. The findings of the study will contribute knowledge to implementation of web-based training in similar settings.     

Healthcare Professionals’ and Policy Makers’ Views on Implementing a Clinical Practice Guideline of Hypertension Management: A Qualitative Study

IntroductionMost studies have reported barriers to guideline usage mainly from doctors’ perspective; few have reported the perspective of other stakeholders. This study aimed to determine the views and barriers to adherence of a national clinical practice guideline (CPG) on management of hypertension from the perspectives of policymakers, doctors and allied healthcare professionals.MethodsThis study used a qualitative approach with purposive sampling. Seven in depth interviews and six focus group discussions were conducted with 35 healthcare professionals (policy makers, doctors, pharmacists and nurses) at a teaching hospital in Kuala Lumpur, Malaysia, between February and June 2013. All interviews were audio-recorded, transcribed verbatim and checked. Thematic approach was used to analyse the data.ResultsTwo main themes and three sub-themes emerged from this study. The main themes were (1) variation in the use of CPG and (2) barriers to adherence to CPG. The three sub-themes for barriers were issues inherent to the CPG, systems and policy that is not supportive of CPG use, and attitudes and behaviour of stakeholders. The main users of the CPG were the primary care doctors. Pharmacists only partially use the guidelines, while nurses and policy makers were not using the CPG at all. Participants had suggested few strategies to improve usage and adherence to CPG. First, update the CPG regularly and keep its content simple with specific sections for allied health workers. Second, use technology to facilitate CPG accessibility and provide protected time for implementation of CPG recommendations. Third, incorporate local CPG in professional training, link CPG adherence to key performance indicators and provide incentives for its use.ConclusionsBarriers to the use of CPG hypertension management span across all stakeholders. The development and implementation of CPG focused mainly on doctors with lack of involvement of other healthcare stakeholders. Guidelines should be made simple, current, reliable, accessible, inclusive of all stakeholders and with good policy support.     

Exploring Managers’ Perspectives on MNCH Program in Pakistan: A Qualitative Study

Background

Pakistan’s Maternal, Newborn and Child Health (MNCH) Program is faced with multiple challenges in service delivery, financial and logistic management, training and deployment of human resources, and integration within the existing health system. There is a lack of evidence on managerial aspects of the MNCH program management and implementation.

Methods and Findings

This study used qualitative methods to explore the challenges national, provincial and district program managers have faced in implementing a community midwifery program in province of Punjab while also exploring future directions for the program under a devolved health system. While the program had been designed in earnest, the planning lacked critical elements of involving relevant stakeholders in design and implementation, socio-demographic context and capacity of the existing health system. Financial limitations, weak leadership and lack of a political commitment to the problem of maternal health have also had an impact on program implementation.

Conclusions

Our study results suggest that there is a need to re-structure the program while ensuring sustainability and collaboration within the health sector to increase uptake of skilled birth attendance and improve maternal health care in Pakistan.     

Descriptive Analysis of Patients’ EMS Use Related to Severity in Tokyo: A Population-Based Observational Study

Introduction

Few studies are available on the clinical characteristics of patients using emergency medical transports in Japan. In this study, we aimed to investigate reasons for emergency medical transports and their relation to clinical severity.

Methods

We conducted a 3-year population-based observational study of patients transported by ambulance to emergency departments (ED) in the capital of Japan, Tokyo, which has a population of about 13 million. Demographic data, reasons for transport, and the severity of initial assessment at ED were recorded. Logistic regression was used to determine the odds of the clinical severity of each reason for transport.

Results

The number of emergency medical transports in the three-year study period was 1,832,637. Mean age was 53±26. Males were 976,142 (53%). Overall, 92% of all transported patients were in a mild or moderate medical state and patients with the 17 most frequent reasons for transport occupied 82% (1,506,017) of all transports. Pain was the most frequent reason for transport, followed by traffic accident. Considering all the patients and their reasons for transport, patients whose reason was pain or a traffic accident (29% of all patients) were in a relatively mild state compared with patients with other reasons for transport. Patients in an altered mental state in the prehospital setting (6.8% of all patients) were in a more severe medical state than other patients.

Conclusions

In Tokyo, Japan, 92% of transported patients were in a mild or moderate medical state. In particular, most patients from traffic accidents were in a mild state, even though traffic accidents were the second most frequent reason for transport. Patients in an altered mental state were most likely to be in a severe medical state.     

The Significance of Certain Elements in Art for Patients’ Experience and Use

Focusing on the interactional aspects of art in health interventions, we qualify guidelines for art in hospitals. Patients in this user-oriented study primarily ranked items to favor figurative art painted in light colors; however both figurative and abstract art in light and dark colors figured among the highest ratings. The role of spatial context, motif, color and shapes seems to have an effect on patients’ experience of a hospital stay. This article draws attention to the application of visual art as a source of stimulus and healing—and a means to affect patient satisfaction in hospitals.     

Women’s Perceptions and Misperceptions of Male Circumcision: A Mixed Methods Study in Zambia

Women’s perceptions of male circumcision (MC) have implications for behavioral risk compensation, demand, and the impact of MC programs on women’s health. This mixed methods study combines data from the first two rounds of a longitudinal study (n = 934) and in-depth interviews with a subsample of respondents (n = 45) between rounds. Most women correctly reported that MC reduces men’s risk of HIV (64% R1, 82% R2). However, 30% of women at R1, and significantly more (41%) at R2, incorrectly believed MC is fully protective for men against HIV. Women also greatly overestimated the protection MC offers against STIs. The proportion of women who believed MC reduces a woman’s HIV risk if she has sex with a man who is circumcised increased significantly (50% to 70%). Qualitative data elaborate women’s misperception regarding MC. Programs should address women’s informational needs and continue to emphasize that condoms remain critical, regardless of male partner’s circumcision status.     

How Does Dog-Walking Influence Perceptions of Health and Wellbeing in Healthy Adults? A Qualitative Dog-Walk-Along Study

The aim of this study was to explore perceptions of health and wellbeing related to dog-walking in healthy adults. Ten self-reported healthy adult dog-walkers took part in one dog-walk-along interview, and nine of the 10 participants also attended one follow-up participatory analysis session. All interviews took place within the metropolitan area of Dunedin, Aotearoa/New Zealand. Dog-walk-along interviews were participant-led, audio and video recorded, and transcribed. Participants’ input into the inductive generation of themes was sought during the follow-up participatory analysis session. Three themes were identified: participants had an “Emotional Connection” with their dog(s); dog-walking led to “Healthy Interactions” (social and environmental interactions); and participants had come to value dog-walking for its aggregate benefits for Psychological Wellbeing. Our dog-walk-along interviews have revealed novel insights about how the emotional connection between human and dog strengthens intrinsic motivation to exercise (through dog-walking) whilst concurrently enhancing human psychological wellbeing through the act of giving something that gives pleasure to the dog. Through the combined methods of dog-walk-along interviews and participatory analysis sessions, we were able to identify negative influences on human psychological well-being that included anxiety about both dog behaviors and social encounters with other humans. Positive and negative aspects of dog-walking that we identified can be used by health promotion advocates to refine dog-walking related advice, programs, and initiatives.     

Parents’ and Physicians’ Perceptions of Children’s Participation in Decision-making in Paediatric Oncology: A Quantitative Study

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analysed by comparing physicians’ and parents’ perspectives and by evaluating factors associated with children’s actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision examined, parents’ and physicians’ perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient’s age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making.     

Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis

Background

Lymphatic filariasis (LF) is a so-called neglected tropical disease, currently overshadowed by higher-profile efforts to address malaria, tuberculosis, and HIV/AIDS. Despite recent successes in arresting transmission, some 40 million people who already have the disease have been largely neglected. This study aims to increase understanding of how this vulnerable, neglected group can be helped.

Methods

We used purposive sampling to select 60 men and women with filarial lymphoedema (45 with filarial elephantiasis and 15 men with filarial hydrocoele) from the south of Sri Lanka in 2004–2005. Participants were selected to give a balance of men and women and poor and nonpoor, and a range of stages of the disease. Participants'' experiences and the consequences of their disease for the household were explored with in-depth qualitative, semistructured interviews.

Findings

LF was extremely debilitating to participants over long periods of time. The stigma attached to the condition caused social isolation and emotional distress, and delayed diagnosis and treatment, resulting in undue advancement of the disease. Free treatment services at government clinics were avoided because the participants'' condition would be identifiable in public. Loss of income due to the condition was reported by all households in the sample, not just the poorest. Households that were already on low incomes were pushed into near destitution, from which it was almost impossible to escape. Affected members of low-income households also had less opportunity to obtain appropriate treatment from distant clinics, and had living and working conditions that made hygiene and compliance difficult.

Significance

This highly vulnerable category of patients has low visibility, thus becoming marginalized and forgotten. With an estimated 300,000 total cases of elephantiasis and/or oedema in Sri Lanka, and around 300,000 men with filarial hydrocoele, the affected households will need help and support for many years to come. These individuals should be specially targeted for identification, outreach, and care. The global strategy for elimination is aimed at the cessation of transmission, but there will remain some 40 million individuals with clinical manifestations whose needs and problems are illustrated in this study.