Patient-centred care: What are the experiences of prostate cancer patients and their partners?

OBJECTIVE: To gain an in depth understanding of the experiences of care of men with prostate cancer and their partners. METHODS: The study design was a qualitative analysis of semi-structured interviews of men (35) who had been diagnosed and treated for prostate cancer and their partners (10). They were recruited from two hospitals in the East Midlands of England and two charities. RESULTS: The interviews showed that although there was no widespread dissatisfaction with care, patients reported problems throughout care. The two main problems were that throughout care patients' and partners' information needs were often not identified or met, and patients' preferred role in decision-making about testing and treatment was not explored. CONCLUSIONS: If patients' experiences of prostate cancer care are to be improved, clinicians need to identify, and respond to, the information and decision-making needs of individual patients and their partners. PRACTICE IMPLICATIONS: Clinicians should identify and meet the needs of patients individually, use appropriate language and formats for communicating information, fully prepare patients for tests, explore and meet the needs of patients for involvement in decision-making, and recognise the important role that their partner plays. Systems and pathways of care should be designed to enable patients and partners to obtain information and participate in decision-making throughout all stages of care.     

Patients' experiences and expectations of general practice: a questionnaire study of differences by ethnic group

BACKGROUND: Research has highlighted variations in morbidity, mortality and health needs by ethnic group, and suggests that some ethnic groups may receive a poorer service. AIM: To explore the impact of ethnic group on patients' experiences and expectations of their general practice consultation. DESIGN OF STUDY: Cross-sectional survey. SETTING: One general practice in a multicultural area of London. METHOD: A total of 604 consecutive patients attending their general practice (response rate = 60.4%) who described their ethnic group as white British, black African, black African Caribbean or Vietnamese completed a measure relating to their experiences and their expectations of the general practice consultation in terms of treatment, communication, patients' agenda, patients' choice and doctor consistency. RESULTS: No differences were found for the black African or black African Caribbean patients. The Vietnamese patients reported better experiences of communication, more focus on their agenda and more attention to their choices than the white British patients. However, they also reported expecting lower levels of communication, less focus on their own agenda and reported wanting less GP consistency than the other ethnic groups. CONCLUSION: Vietnamese patients state that they are receiving better standards of care in general practice than other ethnic groups. However, they also state that they expect less. This may illustrate a problem with assessing experiences of primary care. Higher scores of experience may not illustrate better consultations as such, but only better when compared with a lower level of initial expectation. A lower expectation is easier to fulfil.     

Primary care support for tackling obesity: a qualitative study of the perceptions of obese patients

BACKGROUND: Obesity has become a major public health issue and there is concern about the response of health services to patients who are obese. The perceptions of obese patients using primary care services have not been studied in depth. AIM: To explore obese patients' experiences and perceptions of support in primary care. DESIGN OF STUDY: Qualitative study with semi-structured interviews conducted in participants' homes. SETTING: Five general practices contrasting in socioeconomic populations in Sheffield. METHOD: Purposive sampling and semi-structured interviewing of 28 patients with a diverse range of ages, backgrounds, levels of obesity and experiences of primary care services. RESULTS: Participants typically felt reluctance when presenting with concerns about weight and ambivalence about the services received. They also perceived there to be ambivalence and a lack of resources on the part of the health services. Participants showed a strong sense of personal responsibility about their condition and stigma-related cognitions were common. These contributed to their ambivalence about using services and their sensitivity to its features. Good relationships with primary care professionals and more intensive support partly ameliorated these effects. CONCLUSION: The challenges of improving access to and quality of primary care support in tackling obesity are made more complex by patients' ambivalence and other effects of the stigma associated with obesity.     

Patient focus groups about nurse-led shared care for the chronically ill

Traditional care offered to chronically ill people does not succeed in bridging the gap between primary and secondary care in a way that suits chronic patients' needs. So-called nurse-led shared care may offer a solution, in which a specialised nurse practitioner plays a co-ordinating role at patient level. In this article two nurse-led shared care models for patients with diabetes mellitus type 2 and chronic obstructive pulmonary disease (COPD) are looked upon through the patient's eye. Joint focus groups are conducted in which patients judge the models according to their experiences and indicate the importance they attribute to quality issues. Most of them experience the shared care models as positive and prefer them compared to traditional care. The main quality aspect concerns the provision of information, although its performance needs improvement. The outcome indicates that the qualitative method of patient focus groups should become standard procedure in evaluating the shared care, supported by quantitative means.     

Effects of health education for migrant females with psychosomatic complaints treated by general practitioners. A randomised controlled evaluation study

OBJECTIVE: The effectiveness of use of migrant health educators in the general practitioners' care for female migrants with psychosomatic problems was evaluated to contribute to the improvement of the care for these patients. METHODS: A randomised controlled trial (RCT) design was used. A total of 104 patients (75%) agreed to take part in the intervention study. The patients were from Turkish and Moroccan immigrant groups living in The Netherlands. The intervention group received counselling and education from the migrant health educators as adjuncts to the GPs' care. Special attention was given to the patient's cultural background, supporting the communication between GP and patient. The control group received regular treatment from their GPs. RESULTS: A significant improvement of perceived general health, psychological health and reported ability to cope with pain was observed among the intervention group. No effects were found for social support and the perceived burden of stressful life-events. CONCLUSION: The patients' perceived health and coping abilities improved through the intervention as a whole. Not all outcome measures had been affected due to among others the diversity of physical and psychological complaints the patients suffered from, non-compliance and a perceived decrease of disability over time. PRACTICE IMPLICATIONS: The intervention methods should be integrated in the patient care delivery for migrants in general practice. Further development of intervention methods to address the patients' social support is recommended.     

"Timing It Right": a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home

OBJECTIVE: Discuss family caregivers of stroke survivors' changing needs for education and support across the care continuum. METHODS: Conceptual review. RESULTS: Stroke is a serious, sudden onset illness requiring care across the care continuum. The focus of care, the individuals primarily responsible for providing that care, and patients' self-care abilities change across care environments. Often family members who provide support also experience changes in their caregiving role. To date, however, interventions for family caregivers have not explicitly considered their changing support needs. Our "Timing It Right" framework highlights family caregivers changing experiences and corresponding support needs across the care continuum. Five different phases of caregiver support are discussed: (1) event/diagnosis; (2) stabilization; (3) preparation; (4) implementation; (5) adaptation. The first two phases occur during acute care, the third occurs during acute care and/or in-patient rehabilitation, and the final two phases occur in the community. CONCLUSIONS: Application of this framework has the potential to benefit future intervention efforts by identifying gaps in caregiver education, training, and support. PRACTICE IMPLICATIONS: Recognition of family caregivers changing support needs across the care continuum will assist health care professionals to provide more timely and appropriate support.     

Patient involvement in primary care mental health: a focus group study

BACKGROUND: Patient involvement in health care is a strong political driver in the NHS. However in spite of policy prominence, there has been only limited previous work exploring patient involvement for people with serious mental illness. AIM: To describe the views on, potential for, and types of patient involvement in primary care from the perspectives of primary care health professionals and patients with serious mental illness. DESIGN OF STUDY: Qualitative study consisting of six patient, six health professional and six combined focus groups between May 2002 and January 2003. SETTING: Six primary care trusts in the West Midlands, England. METHOD: Forty-five patients with serious mental illness, 39 GPs, and eight practice nurses participated in a series of 18 focus groups. All focus groups were audiotaped and fully transcribed. Nvivo was used to manage data more effectively. RESULTS: Most patients felt that only other people with lived experience of mental illness could understand what they were going through. This experience could be used to help others navigate the health- and social-care systems, give advice about medication, and offer support at times of crisis. Many patients also saw paid employment within primary care as a way of addressing issues of poverty and social exclusion. Health professionals were, however, more reluctant to see patients as partners, be it in the consultation or in service delivery. CONCLUSIONS: Meaningful change in patient involvement requires commitment and belief from primary care practitioners that the views and experiences of people with serious mental illness are valid and valuable.     

The uncanny mouth - a phenomenological approach to oral cancer

OBJECTIVE: The aim of this retrospective qualitative study was to describe how patients with oral cancer experience their sickness and treatment. METHODS: A purposeful sample of seven patients with oral cancer was interviewed. Data were analysed using a phenomenological approach outlined by van Manen. RESULTS: The essence of the patients' experiences can be described as embodiment in a mouth that has become unreal, or 'uncanny'. At treatment start the body is invaded by cancer, during treatment there is no escape from a wounded mouth, at treatment end the mouth is disabled. CONCLUSIONS: The findings indicate that oral cancer patients' need for support may increase as treatment progresses and may be greatest at end of radiotherapy, as they return home with mouths that have not recovered after treatment and do not function normally. PRACTICE IMPLICATIONS: This suggests the importance of understanding the patients' situation during treatment and their desire for a return to normal living and normal mouth functions at treatment end. If possible, plans for oral rehabilitation should be considered in initial treatment planning. As the treatment of oral cancer is multiprofessional, this knowledge may be useful in guiding the organization of oral cancer care and multiprofessional collaboration.     

Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals

BACKGROUND: New out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important. AIM: To explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers. DESIGN OF STUDY: Qualitative, community-based study using in-depth interviews, focus groups and telephone interviews. SETTING: Urban, semi-urban and rural communities in three areas of Scotland. METHOD: Interviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals. RESULTS: Patients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services. CONCLUSIONS: Service configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.     

Patient-centered care and breast cancer survivors' satisfaction with information

Satisfaction with information is an important patient outcome and may be related to the physician's ability to elicit the patients' concerns, to consider the patients' psychosocial needs, and to involve patients in treatment decision making; these communication techniques have been described under the umbrella of "patient-centered." The aim of this study was to examine the relationship between patient-centered care and satisfaction with information among women with a history of breast cancer. We administered a questionnaire to 182 women who had completed treatment for breast cancer. Our findings suggest that, while breast cancer survivors are highly satisfied with information related to treatment, they are less satisfied with information related to the long-term physical, psychological, and social sequelae of the disease and its treatments. In multivariate analysis, patients' perception of patient-centered behaviors was strongly associated with patients' satisfaction with information. These results provide support for the theory that patient satisfaction is improved when physicians incorporate patient-centered behaviors into their care.     

Women's experiences of an altered appearance during chemotherapy: an indication of cancer status

This study explores breast cancer patients' experiences of chemotherapy treatment, with a focus on the impact of an altered appearance during this time. We present two key themes from the thematic analysis of interviews with 19 women: anxiety that chemotherapy will render them identifiable as a ;person-with-cancer'; and problematic interactions with others. We discuss how changes in appearance can reveal disease status to others, demonstrate the personal impact of temporary changes to appearance, relate these findings to literature on psychosocial aspects of disfigurement and consider the provision of psychosocial care for women experiencing an altered appearance during chemotherapy.     

Patient perspectives on the impact of fibromyalgia

OBJECTIVE: The objective of this study was to elicit and assess important symptom domains and the impact of fibromyalgia on patients' quality of life and functioning from a patient's perspective. The intention was to collect this information as part of an overall effort to overcome shortcomings of existing outcome measures in fibromyalgia. METHODS: This was a qualitative study in which six focus group sessions with 48 women diagnosed with fibromyalgia were conducted to elicit concepts and ideas to assess the impact of fibromyalgia on their lives. RESULTS: The focus groups conducted with fibromyalgia patients identified symptom domains that had the greatest impact on their quality of life including pain, sleep disturbance, fatigue, depression, anxiety, and cognitive impairment. Fibromyalgia had a substantial negative impact on social and occupational function. Patients reported disrupted relationships with family and friends, social isolation, reduced activities of daily living and leisure activities, avoidance of physical activity, and loss of career or inability to advance in careers or education. CONCLUSION: The findings from the focus groups revealed that fibromyalgia has a substantial negative impact on patients' lives. PRACTICE IMPLICATIONS: A comprehensive assessment of the multiple symptoms domains associated with fibromyalgia and the impact of fibromyalgia on multidimensional aspects of function should be a routine part of the care of fibromyalgia patients.     

Pacific Islanders' perspectives on heart failure management

OBJECTIVE: To identify the health beliefs, attitudes, practices, and social and family relations important in heart failure treatment among Pacific Islanders. METHODS: Four focus groups were convened with 36 Native Hawaiians and Samoans with heart failure and their family caregivers. Thematic data analysis was used to categorize data into four domains: health beliefs and attitudes, preferred health practices, social support systems, and barriers to heart failure care. RESULTS: Common coping styles and emotional experiences of heart failure in this population included avoidance or denial of illness, hopelessness and despair, and reliance on spiritual/religious beliefs as a means of support. Among study participants, more Samoans preferred to be treated by physicians whereas more Native Hawaiians preferred traditional Hawaiian methods of healing. Two types of social support (informational and tangible-instrumental) were identified as important in heart failure care. Barriers to heart failure care included poor knowledge of heart failure, lack of trust in physicians' care, poor physician-patient relations, finances, dietary changes, and competing demands on time. CONCLUSION: The recruitment, retention, and adherence of Pacific Islanders to heart failure interventions is affected by an array of psychosocial and socio-cultural factors. PRACTICE IMPLICATIONS: Interventions might be improved by offering participants accurate and detailed information about heart failure and its treatment, engaging the extended family in providing necessary supports, and providing tools to facilitate physician-patient relationships, among others, within the context of a larger socio-cultural system.     

Diabetes self-management: perspectives of Latino patients and their health care providers

Lifestyle modification programs tailored to experience, culture, psychosocial characteristics, and world-view can improve knowledge, self-care behaviors, and glucose control among Latinos with diabetes. Few data exist, however, on improving diabetes self-management among Latinos. In addition, views and practices of practitioners caring for these patients have received little attention. OBJECTIVE: This study describes findings from qualitative research to inform the refinement of self-management interventions tailored to Latino patients with type 2 diabetes. METHODS: Two practitioner focus groups assessed perceptions of patients' knowledge, attitudes, and behaviors. Four patient focus groups examined knowledge, beliefs, practices, barriers, and facilitators. Data were transcribed and subjected to content analysis. RESULTS: Thirty-seven patients seeking care at a community clinic participated, along with 15 health care practitioners. Important knowledge gaps regarding diabetes causation and self-management were identified. Negative attitudes towards self-management were common among patients. Key facilitators included strong religious faith and support of medical practitioners. Families both facilitated and prevented adoption of self-management practices. CONCLUSION: This study provides unique insights into the knowledge, attitudes, practices, and perceived barriers facing Latino patients and their providers regarding diabetes self-management. PRACTICE IMPLICATIONS: Study findings underscore the need to develop tailored programs for this population and to train practitioners on their implementation.     

Effective chronic disease management: patients' perspectives on medication-related problems

OBJECTIVE: To examine medication-related problems from the perspective of patients with a chronic condition and to identify how they may be supported in managing their medication. METHODS: Patients prescribed medication for cardiovascular disease were recruited through five general medical surgeries and four community pharmacies in south London. Data were collected in 98 face-to-face interviews in participants' own homes. Interviews were designed to enable a detailed and holistic exploration of medication-related problems from participants' perspectives. Data were audio-recorded and transcribed verbatim to allow qualitative analysis. RESULTS: Five broad categories of medication-related problem emerged which were examined in the context of patients' perspectives on, and experiences of, the use of medicines and health services. These were concerns about and management of side effects; differing views regarding the use of medicines; cognitive, practical and sensory problems; lack of information or understanding; and problems with access to, and organisation of, services. CONCLUSION: All categories of problem had potential implications for the success of therapy in that they created barriers to adherence, access to medication or informed decision-making. The study demonstrated how patients actively engage in decision-making about their medicines in the home, if not in the consultation. PRACTICE IMPLICATIONS: The five categories of problem provide a focus for interventions by health professionals to support patients in achieving optimal theory outcomes. They demonstrate the need for a comprehensive approach, spanning patient education to the systems of delivery of care. Within the NHS in Britain, policy and practice initiatives are being designed to achieve this end. Further research should focus on the evaluation of professional practices and service developments in supporting patients in the self-management of their medicines.     

Gaining insight into patients' beliefs using qualitative research methodologies

PURPOSE OF THE REVIEW: Qualitative research is a rigorous inductive approach to data collection and data interpretation used to describe patients' perspectives and behaviors. Qualitative research can also be used to develop hypotheses to be tested with quantitative procedures. Combining qualitative and quantitative methodologies can provide more-comprehensive explanations for health actions and beliefs than can be derived from either approach alone. This review serves as a primer for those health care professionals who are unfamiliar with this alternative research paradigm. RECENT FINDINGS: We will explore the similarities and differences between quantitative and qualitative techniques and describe how focus groups allowed us an enhanced appreciation of the reasons for poor inhaled-corticosteroid adherence in low-income African-American patients with persistent asthma. SUMMARY: As populations become more diverse, providers are under increased pressure to effectively communicate and partner with their patients. Qualitative research offers the practitioner a roadmap for enhanced understanding of the unique experiences of patients, thus promoting quality patient-provider relationships.     

Mapping hospice patients' perception and verbal communication of end-of-life needs: an exploratory mixed methods inquiry

Background  

Comprehensive "Total Pain" assessments of patients' end-of-life needs are critical for providing improved patient-clinician communication, assessing needs, and offering high quality palliative care. However, patients' needs-based research methodologies and findings remain highly diverse with their lack of consensus preventing optimum needs assessments and care planning. Mixed-methods is an underused yet robust "patient-based" approach for reported lived experiences to map both the incidence and prevalence of what patients perceive as important end of life needs.     

Physicians' weight loss counseling in two public hospital primary care clinics.

PURPOSE: Primary care physicians are an important source of information on weight management. Nevertheless, weight loss counseling by these physicians remains inadequate. This study sought to determine physicians' barriers to providing weight loss counseling in a public hospital, patients' recall of physicians' weight loss recommendations, and the influence of physicians' counseling on patients' understanding, motivation, and behavior regarding weight loss. METHOD: In 2001, four focus groups of faculty and residents were held at two primary care clinics affiliated with the Louisiana State University Health Sciences Center-Shreveport to determine the barriers to providing weight loss counseling. Scripted probes were used to uncover consensus norms. In 2001-02, structured exit interviews were conducted with 210 overweight or obese patients recruited from the clinics to determine patients' recall of physicians' weight loss recommendations, and patients' understanding of the relationship between weight and health, and their stages of readiness for weight loss. RESULTS: Physicians identified major barriers to providing weight loss counseling, including insufficient confidence, knowledge, and skills. Obesity was underdocumented as a distinct clinical diagnosis. Only 5% of the patients recalled being given the combined weight loss strategy of diet and exercise. However, patients who recalled being counseled to lose weight were more likely to understand the risks of obesity, the benefits of weight loss, and were at a higher stage of readiness for weight loss. CONCLUSIONS: Physicians' weight loss counseling had a significant effect on patients' understanding of and motivation for weight loss. However, physicians provided insufficient guidance on weight management strategies, possibly because of inadequate counseling skills and confidence.     

A "safe space" for learning and reflection: one school's design for continuity with a peer group across clinical clerkships

The value of continuity in medical education, particularly during clerkships, is increasingly recognized. Previous clerkship-based models have described changes that emphasize continuity in patient care, learner supervision, and curriculum. The creation of continuous student peer groups can foster interactions that enhance mutual support through uncomfortable professional transitions during the clerkship years. Here, the authors describe a third-year clerkship model based at the San Francisco Veterans Affairs (VA) Medical Center called VA Longitudinal Rotations (VALOR), designed explicitly to establish a supportive learning environment for small peer groups.Seven groups of medical students (42 total) completed VALOR across three academic years between 2007 and 2009. On clerkships during VALOR, one hour per week was designated for faculty-facilitated sessions amongst peer groups. Students' perceptions of peer group support and overall program satisfaction were determined with immediate post surveys and focus groups at the end of VALOR, and with follow-up surveys 5 to 27 months after completing VALOR. Students strongly valued several elements of VALOR peer groups, including support through clerkship challenges, meeting for facilitated reflection, and appreciating patient experiences across the continuum of care. Students' appreciation for their peer group experiences persisted well after the conclusion of VALOR. VALOR students performed the same as or better than traditional clerkship students on knowledge and skill-based outcomes. The authors demonstrate that their third-year clerkship program using peer groups has built supportive learning networks and facilitated reflection, allowing students to develop critical professional skills. Student communication around patient care was also feasible and highly valued.