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1.  Involving clients and their relatives and friends in psychiatric care: Case managers' experiences of training in resource group assertive community treatment 
Psych Journal  2012;1(1):15-27.
The purpose of this project was to do a qualitative study of an integrated and flexible ACT model, the Resource Group Assertive Community Treatment (RACT), as seen from the perspective of case managers in training. The resource group normally consists of the client, the case manager and other available personnel in the medical and support areas, as well as family members. Nineteen theses were randomly chosen from a set of 80 theses written by a group of Swedish trainee case managers. The exams were conducted as case studies and concerned 19 clients with psychotic problems, 11 men and 8 women. “The Empirical Phenomenological Psychological Method” was used in the analysis, which generated five overarching themes: (a) the RACT program; (b) the resource group; (c) the empowerment of the client; (d) progress in treatment; and (e) the case manager. These together constituted a “therapeutic circle,” in which methods and tools used within the RACT made it possible for the resource group to empower the clients who, as a result, experienced progress with treatment, during which the case manager was the unifying and connecting link.
PMCID: PMC3832238  PMID: 24294489
ACT; case manager; optimal treatment; RACT; resource group
2.  Nurse Empowerment from a Middle-Management Perspective: Nurse Managers' and Assistant Nurse Managers' Workplace Empowerment Views 
The Permanente Journal  2011;15(1):e101-e107.
Background: Researchers have explored empowerment as an important condition for nursing staff but little current research focuses on empowerment from a middle-management perspective.
Aims and Objectives: The purpose of this study was to assess the empowerment of a middle-management group made up of only nurse managers (NMs) and assistant nurse managers (ANMs) in an acute-care hospital setting.
Methods: A questionnaire was distributed online to a convenience sample of NMs (n = 11) and ANMs (n = 31) working in an ethnically diverse acute-care hospital.
Results: Overall, this middle-management group did not feel empowered.
Conclusions: Empowerment as perceived by middle management is crucial for carrying out leadership duties and, in turn, empowering frontline staff. Even though the work is challenging, resources and support, among other constructs of empowerment, must be improved to increase the empowerment of middle management. Nursing administration must understand the importance of an empowered middle management so that middle management can lead effectively and facilitate the delivery of safe, high-quality patient care.
PMCID: PMC3138177  PMID: 21892343
3.  “It’s Our Job”: A Qualitative Study of Family Responses to Ableism 
Forty-five parents of children with autism, cerebral palsy, Down syndrome, and sickle cell disease participated in eight focus groups. Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child’s disability. Themes evolving from the interviews included: (a) support and lack of support, (b) inclusion and exclusion, and (c) the family members’ roles during their interactions with the community. Parents viewed their roles in the community as (a) advocating, (b) educating, (c) informing, (d) ignoring, and (e) hiding. The relationship between themes is presented, and the relationship between themes and parent empowerment is discussed as well as the ways in which the themes reflect underlying ableism.
PMCID: PMC3164980  PMID: 20722475
qualitative research; ableism; community inclusion; empowerment; family support
4.  Life-Sustaining Treatment Decisions in the ICU for Patients with ESLD: A Prospective Investigation 
Research in nursing & health  2012;35(5):518-532.
We conducted a prospective study in the ICU of life-sustaining treatment and comfort care decisions over time in patients with end-stage liver disease from the perspectives of patients, family members, and health care professionals. Six patients with end-stage liver disease, 19 family members, and 122 professionals participated. The overarching theme describing the decision-making process was “on the train.” Four sub-themes positioned patients and family members as passengers with limited control, unable to fully understand the decision-making process. Findings suggest that including patients and family members in non-immediate lifesaving decisions and verifying early on their understanding may help to improve the decision-making process.
PMCID: PMC3442137  PMID: 22581585
intensive care; qualitative research; decision making; liver diseases; life support care
5.  The effect of empowerment program on empowerment level and self-care self-efficacy of patients on hemodialysis treatment 
Patients with end-stage renal disease (ESRD) who receive dialysis confront the burdens of long-term illness and numerous physical problems.
Materials and Methods:
This was a quasi-experimental study. The selected patients from Gorgan Dialysis Centre were randomly assigned into an empowerment group (n = 40) and a control group (n = 40). Instruments comprised scales of Empowerment and the Strategies Used by People to Promote Health (SUPPH). Data were collected at baseline and at 6 weeks following the intervention. The data were analyzed by descriptive and inferential statistics through SPSS (version 17).
The results indicate that scores of the empowerment (P ≤ 0.001) and self-care self-efficacy (P = 0.003) in the empowerment group showed a significantly greater improvement than the control group.
The study supports the effectiveness of the empowerment program to promote empowerment level and self-care self-efficacy of hemodialysis patients.
PMCID: PMC3748561  PMID: 23983734
Empowerment; end-stage renal disease; hemodialysis; Iran; nursing; self-care self-efficacy
6.  Factors Influencing Communication Between the Patients with Cancer and their Nurses in Oncology Wards 
The purpose of this study was to demonstrate the factors influencing nurse-patient communication in cancer care in Iran.
Materials and Methods:
This study was conducted with a qualitative conventional content analysis approach in oncology wards of hospitals in Tabriz. Data was collected through purposive sampling by semi-structured deep interviews with nine patients, three family members and five nurses and analyzed simultaneously. Robustness of data analysis was evaluated by the participants and external control.
The main theme of the research emerged as “three-factor effects” that demonstrates all the factors related to the patient, nurse, and the organization and includes three categories of “Patient as the center of communication”, “Nurse as a human factor”, and “Organizational structures”. The first category consists of two sub-categories of “Imposed changes by the disease” and the “patient's particular characteristics”. The second category includes sub-categories of “sense of vulnerability” and “perception of professional self: Pre-requisite of patient-centered communication”. The third category consists of the sub-categories of “workload and time imbalance”, “lack of supervision”, and “impose duties in context of neglecting nurse and patient needs”. Characteristics of the patients, nurses, and care environment seemed to be the influential factors on the communication.
In order to communicate with cancer patients effectively, changes in philosophy and culture of the care environment are essential. Nurses must receive proper trainings which meet their needs and which focus on holistic and patient-centered approach.
PMCID: PMC3931236  PMID: 24600177
Cancer; Effective factors; Nurse-patient communication; Oncology
7.  Patients as healthcare consumers in the public and private sectors: a qualitative study of acupuncture in the UK 
The aim of this study was to compare patients' experiences of public and private sector healthcare, using acupuncture as an example. In the UK, acupuncture is popular with patients, is recommended in official guidelines for low back pain, and is available in both the private sector and the public sector (NHS). Consumerism was used as a theoretical framework to explore patients' experiences.
Semi-structured face-to-face interviews were conducted in 2007-8 with a purposive sample of 27 patients who had recently used acupuncture for painful conditions in the private sector and/or in the NHS. Inductive thematic analysis was used to develop themes that summarised the bulk of the data and provided insights into consumerism in NHS- and private practice-based acupuncture.
Five main themes were identified: value for money and willingness to pay; free and fair access; individualised holistic care: feeling cared for; consequences of choice: empowerment and vulnerability; and "just added extras": physical environment. Patients who had received acupuncture in the private sector constructed detailed accounts of the benefits of private care. Patients who had not received acupuncture in the private sector expected minimal differences from NHS care, and those differences were seen as not integral to treatment. The private sector facilitated consumerist behaviour to a greater extent than did the NHS, but private consumers appeared to base their decisions on unreliable and incomplete information.
Patients used and experienced acupuncture differently in the NHS compared to the private sector. Eight different faces of consumerist behaviour were identified, but six were dominant: consumer as chooser, consumer as pragmatist, consumer as patient, consumer as earnest explorer, consumer as victim, and consumer as citizen. The decision to use acupuncture in either the private sector or the NHS was rarely well-informed: NHS and private patients both had misconceptions about acupuncture in the other sector. Future research should evaluate whether the differences we identified in patients' experiences across private and public healthcare are common, whether they translate into significant differences in clinical outcomes, and whether similar faces of consumerism characterise patients' experiences of other interventions in the private and public sectors.
PMCID: PMC3127982  PMID: 21619572
8.  Can Participation in Documentation Influence Experiences of Involvement in Care Decision-Making? 
The Open Nursing Journal  2013;7:66-72.
Patients have the right to influence the care they receive, but their wish to participate in care decision-making is unclear.
This study investigates whether participation in nursing documentation influences patient participation in care decision-making, mastery, self-esteem, empowerment and depressive feelings among adult in-patients with chronic disease.
Materials and Methodology:
Adult patients (n=39) with chronic diseases were randomized. The intervention group participated in nursing documentation. Upon departure, patients filled in questionnaires about participation in care decision-making, mastery, self-esteem, empowerment and depressive feelings.
The majority of the patients preferred a collaborative or passive role regarding care decision-making. Lack of knowledge was one reason for non-participation. Having been diagnosed more than five years previously meant stronger empowerment.
It is a challenge for nurses to find strategies to assess patients’ wishes regarding participation in care decision-making. Nurses must support patients’ knowledge of their disease and empowerment.
PMCID: PMC3680981  PMID: 23802031
Care decision-making; empowerment; knowledge; nursing documentation; participation; well-being.
9.  Facilitating Empowerment in Employees with Chronic Disease: Qualitative Analysis of the Process of Change 
Introduction In the field of healthcare, empowering patients who have a chronic disease is defined as increasing their knowledge and skills, in order to enable them to define their treatment goals and take personal responsibility for their medical treatment. Our goal was to explore the nature of empowerment for employees who have a chronic disease and who experience work-related problems. Methods We used an explorative qualitative approach to document, from a professional perspective, the experiences of patients who participated in an empowerment training program. The researcher and the three instructors identified several themes which appeared to be important to many participants. These themes were fine-tuned and illustrated using brief case histories. Results We identified seven themes and characterized them in terms of employee tasks. These included: (1) developing a realistic understanding of one’s abilities, (2) standing up for oneself in a self-confident way, (3) maintaining social relations based on mutual understanding with supervisors and colleagues, (4) collecting and assimilating knowledge of one’s options, rights and duties, (5) consulting others and negotiating with regard to work accommodations, (6) planning one’s job so as to provide personal satisfaction, and (7) maintaining a social life outside work. Not every employee is faced with all of these tasks, but most have to deal with several. Conclusion Empowerment presupposes that employees with a chronic disease can act to solve problems at the workplace. The experiences during a comprehensive empowerment training illustrate that a process of reflection on personal emotions and a cognitive process of exploration and identification of bottlenecks at work may precede these actions. Our primary contribution is the aforementioned list of seven common tasks that many workers have to perform. Disseminating the list can support employees who have a chronic disease and may also be useful for their managers, HRM staff, occupational health and other healthcare workers.
PMCID: PMC2775116  PMID: 19582552
Job retention; Chronic disease; Rehabilitation, vocational; Disability management; Work disability; Employment; Workplace; Job satisfaction; Occupational health; Return to work
10.  Resident and family perceptions of the nurse practitioner role in long term care settings: a qualitative descriptive study 
BMC Nursing  2013;12:24.
Research evidence supports the positive impact on resident outcomes of nurse practitioners (NPs) working in long term care (LTC) homes. There are few studies that report the perceptions of residents and family members about the role of the NP in these settings. The purpose of this study was to explore the perceptions of residents and family members regarding the role of the NP in LTC homes.
The study applied a qualitative descriptive approach. In-depth individual and focus group interviews were conducted with 35 residents and family members from four LTC settings that employed a NP. Conventional content analysis was used to identify themes and sub-themes.
Two major themes were identified: NPs were seen as providing resident and family-centred care and as providing enhanced quality of care. NPs established caring relationships with residents and families, providing both informational and emotional support, as well as facilitating their participation in decision making. Residents and families perceived the NP as improving availability and timeliness of care and helping to prevent unnecessary hospitalization.
The perceptions of residents and family members of the NP role in LTC are consistent with the concepts of person-centred and relationship-centred care. The relationships NPs develop with residents and families are a central means through which enhanced quality of care occurs. Given the limited use of NPs in LTC settings, there is an opportunity for health care policy and decision makers to address service inadequacies through strategic deployment of NPs in LTC settings. NPs can use their expert knowledge and skill to assist residents and families to make informed choices regarding their health care and maintain a positive care experience.
PMCID: PMC3849937  PMID: 24074157
Nurse practitioner; Long term care; Qualitative descriptive; Perceptions; Residents; Family members; Person-centred care
11.  Measuring Staff Empowerment Regarding Health Care for Clients with Intellectual Disabilities 
Background. Women with intellectual disabilities (ID) contract breast cancer at the same rate as the general population but have higher breast cancer mortality and lower rates of breast cancer screening. Many women with ID live in group homes or supported residences where they are cared for by direct support workers. While direct support workers are thought to influence client health, this effect is underresearched, and we lack tools for measuring staff empowerment and perceptions regarding client health. Methods. We developed and validated an instrument, the staff empowerment tool (SET), to measure staff empowerment as related to supporting clients in preventive health. Results. The SET was found to be a reliable instrument for measuring staff activation and empowerment in helping clients access mammography screening. Discussion. Quantifying staff empowerment and perspectives is important in studying and reducing disparities among adults with ID, a vulnerable population. Further research to determine the impact of staff empowerment levels on their clients' health and health care access is suggested. The SET is a valuable tool for measuring the construct of staff empowerment, evaluating interventions, and collecting data regarding variation in staff empowerment.
PMCID: PMC3955629  PMID: 24719760
12.  Hope and advance care planning in patients with end stage renal disease: qualitative interview study 
BMJ : British Medical Journal  2006;333(7574):886.
Objective To understand hope in the context of advance care planning from the perspective of patients with end stage renal disease.
Design Qualitative in-depth interview study.
Setting Outpatient department of a university affiliated nephrology programme.
Participants 19 patients with end stage renal disease purposively selected from the renal insufficiency, haemodialysis, and peritoneal dialysis clinics.
Results Patients' hopes were highly individualised and were shaped by personal values. They reflected a preoccupation with their daily lives. Participants identified hope as central to the process of advance care planning in that hope helped them to determine future goals of care and provided insight into the perceived benefits of advance care planning and their willingness to engage in end of life discussions. More information earlier in the course of the illness focusing on the impact on daily life, along with empowerment of the patient and enhancing professional and personal relationships, were key factors in sustaining patients' ability to hope. This helped them to imagine possibilities for a future that were consistent with their values and hopes. The reliance on health professionals to initiate end of life discussions and the daily focus of clinical care were seen as potential barriers to hope.
Conclusions Facilitated advance care planning through the provision of timely appropriate information can positively enhance rather than diminish patients' hope. Current practices concerning disclosure of prognosis are ethically and psychologically inadequate in that they do not meet the needs of patients.
PMCID: PMC1626305  PMID: 16990294
13.  Patient empowerment in long-term conditions: development and preliminary testing of a new measure 
Patient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes. However, assessing the role of empowerment is dependent on effective measures of empowerment. Although many measures of empowerment exist, no measure has been developed specifically for patients with long-term conditions in the primary care setting. This study presents preliminary data on the development and validation of such a measure.
We conducted two empirical studies. Study one was an interview study to understand empowerment from the perspective of patients living with long-term conditions. Qualitative analysis identified dimensions of empowerment, and the qualitative data were used to generate items relating to these dimensions. Study two was a cross-sectional postal study involving patients with different types of long-term conditions recruited from general practices. The survey was conducted to test and validate our new measure of empowerment. Factor analysis and regression were performed to test scale structure, internal consistency and construct validity.
Sixteen predominately elderly patients with different types of long-term conditions described empowerment in terms of 5 dimensions (identity, knowledge and understanding, personal control, personal decision-making, and enabling other patients). One hundred and ninety seven survey responses were received from mainly older white females, with relatively low levels of formal education, with the majority retired from paid work. Almost half of the sample reported cardiovascular, joint or diabetes long-term conditions. Factor analysis identified a three factor solution (positive attitude and sense of control, knowledge and confidence in decision making and enabling others), although the structure lacked clarity. A total empowerment score across all items showed acceptable levels of internal consistency and relationships with other measures were generally supportive of its construct validity.
Initial analyses suggest that the new empowerment measure meets basic psychometric criteria. Reasons concerning the failure to confirm the hypothesized factor structure are discussed alongside further developments of the scale.
PMCID: PMC3725177  PMID: 23835131
Patient empowerment; Long-term conditions; Primary care; Patients’ perspectives; Semi-structured interviews; Measurement; Scale development; Psychometrics; Health outcomes
14.  Functional Interpretations of Sadness, Stress and Demoralization among an Urban Population of Low-Income Mothers 
Maternal and child health journal  2009;14(2):245-253.
We sought to understand how low-income urban mothers explain feelings of sadness, stress or demoralization in the context of their life experiences.
28 in-depth qualitative interviews, constituting part of a community-based participatory research (CBPR) project aimed at developing a culturally relevant, community-based intervention for maternal depression. Qualitative data validity was ensured through investigator and expert triangulation, and through member checking.
The following themes emerged: 1) Informants spoke of wanting reprieves from chaos, and discussed this desire relative to wanting to be alone. By contrast, informants expressed loneliness not only in interpersonal terms, but also related to having problems that precluded future relationships, or feeling unique in experiencing an adversity. 2) Informants spoke of demoralization associated with feeling that their problems were externally imposed and therefore beyond their control, but spoke of empowerment associated with owning one’s problems. 3) Informants discussed degrees of sadness in relation to their own abilities to adjust or modify their mood, or their ability to contain their feelings.
Our data suggest that helping a mother find reprieves from chaos, increasing her perception of her own locus of control around externally imposed adversities, and empowering her to recognize and self-manage her own feelings may constitute important elements of a culturally relevant, community-based intervention for depression.
PMCID: PMC3154009  PMID: 19156506
depression; sadness; ethnographic interviews; qualitative research; vulnerable populations
15.  Ethical issues in palliative care. Views of patients, families, and nonphysician staff. 
Canadian Family Physician  2003;49:1626-1631.
OBJECTIVE: Much of what we know about ethical issues in palliative care comes from the perceptions of physicians and ethicists. In this study our goal was to hear other voices and to gain first-hand knowledge of the possibly contrasting views of patients, their families, nurses, volunteers, and other team members on end-of-life issues. DESIGN: Qualitative study using semistructured interviews. SETTING: Inpatient and consultation palliative care service of the Royal Victoria Hospital in Montreal, Que. PARTICIPANTS: Of 113 people interviewed, 13 were patients, 43 were family members, 32 were volunteers, 14 were nurses, and 11 were other staff. METHOD: Interviewers elicited subjects' perspectives on ethical issues. Content analysis was used to identify, code, and categorize themes in the data. MAIN FINDINGS: Communication difficulties and insufficient resources and staff were the most frequently mentioned problems in this palliative care setting. CONCLUSION: The findings of this study will help guide policy decisions and setting of educational priorities in end-of-life care, particularly regarding the importance of adequate communication.
PMCID: PMC2214167  PMID: 14708928
16.  Perceived Changes in Communication as an Effect of STN Surgery in Parkinson's Disease: A Qualitative Interview Study 
Parkinson's Disease  2011;2011:540158.
The aim of the present study was to explore four individuals' perspective of the way their speech and communication changed as a result of subthalamic nucleus deep brain stimulation treatment for Parkinson's disease. Interviews of two men and two women were analyzed using qualitative content analysis. Three themes emerged as a result of the analysis. The first theme included sub-themes describing both increased and unexpected communication difficulties such as a more vulnerable speech function, re-emerging stuttering and cognitive difficulties affecting communication. The second theme comprised strategies to improve communication, using different speech techniques and communicative support, as well as trying to achieve changes in medical and stimulation parameters. The third theme included descriptions of mixed feelings surrounding the surgery. Participants described the surgery as an unavoidable dramatic change, associated both with improved quality of life but also uncertainty and lack of information, particularly regarding speech and communication changes. Despite negative effects on speech, the individuals were generally very pleased with the surgical outcome. More information before surgery regarding possible side effects on speech, meeting with a previously treated patient and possibly voice and speech therapy before or after surgery are suggested to facilitate the adjustment to the new speech conditions.
PMCID: PMC3159130  PMID: 21876840
17.  Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study 
Journal of Community Genetics  2013;4(4):469-482.
Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p < 0.001). Participants were more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p < 0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.
Electronic supplementary material
The online version of this article (doi:10.1007/s12687-013-0154-0) contains supplementary material, which is available to authorized users.
PMCID: PMC3773313  PMID: 23794263
Genomics research; Interest; Interviews; Patients; Personal results
18.  The Process and Outcome of Life Review Psychotherapy With Depressed Homebound Older Adults 
Nursing research  1997;46(5):277-283.
The purpose of this study was to examine the process and outcomes of life review therapy provided by an advanced practice geropsychiatric nurse to older adults discharged from psychiatric hospitals to home health care. Eighty older adults over 65 years of age with a primary diagnosis of depression were treated at home for life review psychotherapy sessions (M = 13.24, SD = 8.65). Content analysis methods, both latent and manifest, were used to analyze the data and identify themes. Themes were classified as empowerment (connection, coping, efficacy, hope, and trust) or disempowerment (denial, despair, helpless, isolation, loneliness, and loss). Findings showed that, as a result of the life review therapy, there was a significant decrease (p < .0001) in total disempowerment themes (M1 = 13.07; M2 = 9.14).
PMCID: PMC2562588  PMID: 9316600
19.  Empowerment interventions, knowledge translation and exchange: perspectives of home care professionals, clients and caregivers 
Few studies have examined empowerment interventions as they actually unfold in home care in the context of chronic health problems. This study aims to document the empowerment process as it plays out in interventions with adults receiving home care services.
The qualitative design chosen is a fourth generation evaluation combined with case studies. A home care team of a health and social services center situated in the Eastern Townships (Québec, Canada) will be involved at every step in the study. A sample will be formed of 15 health care professionals and 30 of their home care clients and caregiver. Semi-structured interviews, observations of home care interventions and socio-demographic questionnaires will be used to collect the data. Nine instruments used by the team in prior studies will be adapted and reviewed. A personal log will document the observers' perspectives in order to foster objectivity and the focus on the intervention. The in-depth qualitative analysis of the data will illustrate profiles of enabling interventions and individual empowerment.
The ongoing process to transform the health care and social services network creates a growing need to examine intervention practices of health care professionals working with clients receiving home care services. This study will provide the opportunity to examine how the intervention process plays out in real-life situations and how health care professionals, clients and caregivers experience it. The intervention process and individual empowerment examined in this study will enhance the growing body of knowledge about empowerment.
PMCID: PMC2528009  PMID: 18713474
20.  Continuity of care 
Canadian Family Physician  2011;57(8):915-921.
To understand how the conception of continuity of care can influence family physician trainees by exploring the perspectives of established family physicians, physicians working in episodic care who had been trained in family medicine, and family medicine trainees.
Qualitative analysis of focus group data.
Southeastern Ontario.
Seven focus groups consisting of members from 3 groups: established family physicians, physicians working in episodic care who had been trained in family medicine, or family medicine trainees.
Semistructured focus group interviews were taped and transcribed. Using constant comparison, the transcripts were analyzed for themes related to continuity of care and how these were valued among the 3 groups of physicians.
Main findings
The 3 groups differed on how they valued continuity of the relationship, how they valued informational continuity, and how these concepts affected their perceptions of difficult clinician-patient relationships. Experienced family physicians described long-term relationships as a core value in their practices. In contrast, episodic care physicians valued informational continuity. Family medicine trainees learned about continuity of care through role models and theoretical teaching. They valued the efficiency gained by knowing patients and the reward of being recognized by patients. Family medicine trainees expressed greater distress with difficult clinician-patient interactions than experienced family physicians expressed. It was unclear whether the challenges of difficult relationships were offset by the trainees’ appreciation of continuity of care.
Different perceptions, settings, and skills can influence how continuity of care is valued, which might affect career and practice decisions among trainees.
PMCID: PMC3155449  PMID: 21841115
21.  Diabetes Empowerment, Medication Adherence and Self-Care Behaviors in Adults with Type 2 Diabetes 
Evidence suggests that empowerment is an important factor to address everyday aspects of dealing with a chronic disease. This study evaluated the effect of diabetes empowerment on medication adherence and self-care behaviors in adults with type 2 diabetes.
Subjects and Methods
Data on 378 subjects with type 2 diabetes recruited from two primary care clinics in the southeastern United States were examined. Previously validated scales were used to measure diabetes empowerment, medication adherence, diabetes knowledge, and diabetes self-care behaviors (including diet, physical activity, blood sugar testing, and foot care). Multiple linear regression was used to assess the independent effect of diabetes empowerment on medication adherence and self-care behaviors controlling for relevant covariates.
Eighty-three percent were non-Hispanic blacks, 69% were women, 22% were 65 years or older, 68% were not married, 26% had less than high school education, 60% were unemployed, 39% were uninsured, and 47% had a yearly income <$10,000. Empowerment had significant correlations with medication adherence (r=0.17, P<0.003), diabetes knowledge (r=0.16, P=0.007), diet (r=0.24, P<0.001), exercise (r=0.25, P<0.001), blood sugar testing (r=0.12, P=0.043), and foot care (r=0.18, P=0.002). In the regression model, diabetes empowerment was significantly associated with medication adherence (β=−0.04, P=0.001), diabetes knowledge (β=0.09, P=0.012), diet (β=0.09, P<0.001), exercise (β=0.10, P<0.001), blood sugar testing (β=0.07, P=0.016), and foot care (β=0.08, P=0.001).
In this sample, diabetes empowerment was related to better diabetes knowledge, medication adherence and improved self-care behaviors. Emphasis on empowerment and self-efficacy is relevant to improve outcomes in the management of diabetes.
PMCID: PMC3389377  PMID: 22524548
22.  Striving to be prepared for the painful: Management strategies following a family member's diagnosis of advanced cancer 
BMC Nursing  2011;10:18.
Cancer has consequences not only for the sick person but also for those who have a close relationship with that person. Greater knowledge about how family members manage the situation in the period immediately following the diagnosis means greater opportunity to provide the best possible support for the family. The purpose of this study was to explore management strategies that family members use when the patient is in the early stage of treatment for advanced cancer.
Twenty family members of cancer patients were included in the study shortly after the diagnosis. The patients had been diagnosed 8-14 weeks earlier with advanced lung cancer or gastrointestinal cancer. The data were collected in interviews with family members and subjected to qualitative latent content analysis. Through the identification of similarities and dissimilarities in the units of meaning, abstraction into codes and sub-themes became possible. The sub-themes were then brought together in one overarching theme.
The overall function of management strategies is expressed in the theme Striving to be prepared for the painful. The family members prepare themselves mentally for the anticipated tragedy. Family relationships become increasingly important, and family members want to spend all their time together. They try to banish thoughts of the impending death and want to live as normal a life as possible. It becomes important to family members to live in the present and save their energy for the time when they will need it the most. How participants handle their worries, anxiety and sadness can be categorized into seven sub-themes or management strategies: Making things easier in everyday life, Banishing thoughts about the approaching loss, Living in the present, Adjusting to the sick person's situation, Distracting oneself by being with others, Shielding the family from grief, and Attempting to maintain hope.
The findings revealed that the family members have their own resources for handling the early stage of the cancer trajectory in an acceptable way. There is a need for longitudinal studies to generate knowledge for designing evidence-based intervention programmes that can prevent future ill-health in these vulnerable family members.
PMCID: PMC3203032  PMID: 21970836
23.  Validation of a case definition to define chronic dialysis using outpatient administrative data 
Administrative health care databases offer an efficient and accessible, though as-yet unvalidated, approach to studying outcomes of patients with chronic kidney disease and end-stage renal disease (ESRD). The objective of this study is to determine the validity of outpatient physician billing derived algorithms for defining chronic dialysis compared to a reference standard ESRD registry.
A cohort of incident dialysis patients (Jan. 1 - Dec. 31, 2008) and prevalent chronic dialysis patients (Jan 1, 2008) was selected from a geographically inclusive ESRD registry and administrative database. Four administrative data definitions were considered: at least 1 outpatient claim, at least 2 outpatient claims, at least 2 outpatient claims at least 90 days apart, and continuous outpatient claims at least 90 days apart with no gap in claims greater than 21 days. Measures of agreement of the four administrative data definitions were compared to a reference standard (ESRD registry). Basic patient characteristics are compared between all 5 patient groups.
1,118,097 individuals formed the overall population and 2,227 chronic dialysis patients were included in the ESRD registry. The three definitions requiring at least 2 outpatient claims resulted in kappa statistics between 0.60-0.80 indicating "substantial" agreement. "At least 1 outpatient claim" resulted in "excellent" agreement with a kappa statistic of 0.81.
Of the four definitions, the simplest (at least 1 outpatient claim) performed comparatively to other definitions. The limitations of this work are the billing codes used are developed in Canada, however, other countries use similar billing practices and thus the codes could easily be mapped to other systems. Our reference standard ESRD registry may not capture all dialysis patients resulting in some misclassification. The registry is linked to on-going care so this is likely to be minimal. The definition utilized will vary with the research objective.
PMCID: PMC3055853  PMID: 21362182
24.  Iranian cancer patients’ perception of spirituality: a qualitative content analysis study 
BMC Nursing  2012;11:19.
Spirituality is a subjective and multi-dimensional concept. The ambiguity in its meaning can create barriers in its application in both education and medicine. The present study aimed to explore the Iranian cancer patients’ perception of spirituality.
A qualitative study, using the content analysis approach, was conducted. Semi-structured interviews were held with 11 cancer patients and six members of their families in one of Tehran’s hospitals and a charity institute. The data generated were transcribed verbatim and content analysis approach was used for data reduction, naming data, obtaining analytical code and determining categories and themes.
Three themes (and seven sub-themes) emerged from the data analysis: 1) God as the spiritual truth (relationship with God and trust in God), 2) Moralities as a spiritual sign (considering personal and social moral codes) and 3) Spiritual resources as the source of hope (religious, personal and social resources).
Overall, in the view of cancer patients, spirituality can be defined in a religious context. However, some of them believe in morality beside religiosity, so health care staff must pay due attention to these aspects, to provide them with the opportunity to use spiritual resources.
PMCID: PMC3500707  PMID: 23043231
Spirituality; Perception; Experience; Cancer patients; Content analysis
25.  Understanding Physicians' Skills at Providing End-of-Life Care 
A framework for understanding and evaluating physicians' skills at providing end of life care from the perspectives of patients, families, and health care workers will promote better quality of care at the end of life.
To develop a comprehensive understanding of the factors contributing to the quality of physicians' care for dying patients.
Qualitative study using focus groups and content analysis based on grounded theory.
Seattle, Washington.
Eleven focus groups of patients with chronic obstructive pulmonary disease, AIDS, or cancer (79 patients); 3 groups of family members who had a loved one die of chronic disease (20 family members); 4 groups of nurses and social workers from hospice or acute care settings (27 health care workers); and 2 groups of physicians with expertise in end-of-life care (11 physicians).
We identified 12 domains of physicians' skills at providing end-of-life care: accessibility and continuity; team coordination and communication; communication with patients; patient education; inclusion and recognition of the family; competence; pain and symptom management; emotional support, personalization; attention to patient values; respect and humility; and support of patient decision making. within these domains, we identified 55 specific components of physicians' skills. Domains identified most frequently by patients and families were emotional support and communication with patients. Patients with the 3 disease groups, families, and health care workers identified all 12 domains. Investigators used transcript analyses to construct a conceptual model of physicians' skills at providing end-of-life care that grouped domains into 5 categories.
The 12 domains encompass the major aspects of physicians' skills at providing high-quality end-of-life care from the perspectives of patients, their families, and health care workers, and provide a new framework for understanding, evaluating, and teaching these skills. Our findings should focus physicians, physician-educators, and researchers on communication, emotional support, and accessibility to improve the quality of end-of-life care.
PMCID: PMC1495161  PMID: 11251749
end-of-life care; physician competence; qualitative research

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