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
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.
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.
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.
Care decision-making; empowerment; knowledge; nursing documentation; participation; well-being.
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.
qualitative research; ableism; community inclusion; empowerment; family support
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.
intensive care; qualitative research; decision making; liver diseases; life support care
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.
Empowerment; end-stage renal disease; hemodialysis; Iran; nursing; self-care self-efficacy
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.
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.
Job retention; Chronic disease; Rehabilitation, vocational; Disability management; Work disability; Employment; Workplace; Job satisfaction; Occupational health; Return to work
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.
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.
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.
Patient empowerment; Long-term conditions; Primary care; Patients’ perspectives; Semi-structured interviews; Measurement; Scale development; Psychometrics; Health outcomes
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.
depression; sadness; ethnographic interviews; qualitative research; vulnerable populations
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.
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.
To investigate whether high blood pressure accelerates renal function decline in patients with advanced chronic kidney disease (CKD), we studied the association of systolic (SBP) and diastolic blood pressure (DBP) with decline in renal function and time until the start of renal replacement therapy (RRT) in patients with CKD stages IV-V on pre-dialysis care.
In the PREPARE-1 cohort 547 incident pre-dialysis patients, referred as part of the usual care to outpatient clinics of eight Dutch hospitals, were included between 1999 and 2001 and followed until the start of RRT, mortality, or end of follow-up (January 1st 2008). Main outcomes were rate of decline in renal function, estimated as the slope of available eGFR measurements, and time until the start of RRT.
A total of 508 patients, 57% men and median (IQR) age of 63 (50-73) years, were available for analyses. Mean (SD) decline in renal function was 0.35 (0.75) ml/min/1.73 m2/month. Every 10 mmHg increase in SBP or DBP resulted in an accelerated decline in renal function (adjusted additional decline 0.04 (0.02;0.07) and 0.05 (0.00;0.11) ml/min/1.73 m2/month respectively) and an earlier start of RRT (adjusted HR 1.09 (1.04;1.14) and 1.16 (1.05;1.28) respectively). Furthermore, patients with SBP and DBP above the BP target goal of < 130/80 mmHg experienced a faster decline in renal function (adjusted additional decline 0.31 (0.08;0.53) ml/min/1.73 m2/month) and an earlier start of RRT (adjusted HR 2.08 (1.25;3.44)), compared to patients who achieved the target goal (11%). Comparing the decline in renal function and risk of starting RRT between patients with only SBP above the target (≥ 130 mmHg) and patients with both SBP and DBP below the target (< 130/80 mmHg), showed that the results were almost similar as compared to patients with both SBP and DBP above the target (adjusted additional decline 0.31 (0.04;0.58) ml/min/1.73 m2/month and adjusted HR 2.24 (1.26;3.97)). Therefore, it seems that especially having SBP above the target is harmful.
In pre-dialysis patients with CKD stages IV-V, having blood pressure (especially SBP) above the target goal for CKD patients (< 130/80 mmHg) was associated with a faster decline in renal function and a later start of RRT.
blood pressure; chronic kidney disease stages IV-V; estimated glomerular filtration rate; pre-dialysis care; renal replacement therapy
In this randomized controlled trial we tested the efficacy of an intervention program (CARE: Creating Avenues for Relative Empowerment) for improving outcomes of hospitalized older adults and their family caregivers. Family caregiver-patient dyads (n=407) were randomized into two groups. The CARE group received a two-session empowerment-educational program 1-2 days post-admission and 1-3 days pre-discharge. The attention control group received a generic information program during the same timeframe. Follow-up was at 2 weeks and 2 months post-discharge. There were no statistically significant differences in patient or family caregiver outcomes. However, inconsistent evidence of role outcome differences suggests that CARE may benefit certain family caregiver subgroups instead of being a one-size-fits-all intervention strategy. Closer examination of CARE's mechanisms and effects is needed.
RCT; family caregivers; older adult patients; hospital care
Communication between healthcare settings at patient transfers between primary and secondary care, ‘handover’, is a critical and risky process for patients. Patients’ views on their roles in these processes are often lacking despite the knowledge that patient participation contributes to enhanced safety and wellbeing.
This study aims to improve the knowledge and understanding of patients’ perspectives about their participation in handover.
Twenty-three Swedish patients with chronic diseases were individually interviewed about their experiences with handovers between three clinical microsystems: emergency room, emergency ward and primary healthcare centres. Data were analysed using inductive qualitative content analysis.
Patients participated within the microsystems by exchanging information, and between microsystems by making contact with and conveying information to their next healthcare provider. Enablers for participation included positive encounters with providers, patient empowerment and beliefs about organisational factors. Patients’ trust in their providers, and providers’ attitudes were important factors in patients’ willingness to communicate. Patients who thought medical records access was shared across microsystems volunteered less information to their providers. Patients with experiences of non-effective handovers took more responsibility in the handover to ensure continuity of care.
Patients participate actively in handovers when they feel a need for involvement to ensure continuity of care, and are less active when they perceive that their contribution is unnecessary or not valued. In acute care settings with short hospital stays and less time to establish a trusting relationship between patients and their providers, discharge encounters may be important enablers for patient engagement in handovers. The advantages of a redundant handover process need to be considered.
Emergency department; Patient-centred care; Primary care; Qualitative research; Transitions in care
To describe the potential role of the Internet as a vehicle for improving integration of care through activating chronic kidney disease patients and their family members. Also, to describe how that potential is being developed through a website sponsored by the Medicare program in the United States.
The Internet is expanding at a rapid rate, and health-related websites are one of its most popular features. Efforts to promote integration of care have focused mainly on providers up to now, and more emphasis is needed on the potential roles of patients. Chronically ill patients have particular needs for improved education about their conditions and enhanced involvement in care planning and treatment decisions. Medicare developed the Dialysis Facility Compare website to serve those goals for people with chronic kidney disease.
We conducted qualitative research with 140 chronic kidney disease patients and family members, and 130 renal care professionals to evaluate and improve the Dialysis Facility Compare website. A series of 19 focus groups, 13 triads (small focus groups), and 56 individual interviews were conducted in four regions of the United States and by telephone.
We found that the Dialysis Facility Compare website has the potential to improve integration of care for people with chronic kidney disease in at least three ways. First: by expanding the roles of patients as members of the multi-disciplinary team of caregivers treating their disease. Second: through better integration of the informal care provided in the home and community with the formal care provided by health professionals. Third: by improving coordination of between care provided in the pre-dialysis and dialysis phases of the disease.
We developed recommendations for revising and enhancing the Dialysis Facility Compare website in a number of ways to better promote patient activation and integration of care. The unique features of the Internet, such as its different dimensions of interactivity, and applications of behavioural theories for website design should also be further explored.
integrated care; client perspective; chronic care; the internet; disease management; chronic kidney disease
Clinicians often feel challenged by the need to deliver difficult prognostic information to patients with a life-limiting illness while, at the same time, supporting their hopes. Few studies have examined nurses’ perspectives on their roles in meeting these patient and family needs.
Our objectives were to 1) describe nurses’ perspectives on meeting patients’ needs for hope and illness information; and 2) offer insights for interventions designed to improve communication about end-of-life care for patients and their families.
Using experienced interviewers, we conducted one-on-one, semi-structured interviews with 22 nurses caring for patients with advanced chronic obstructive pulmonary disease or cancer. Interviews were analyzed using a limited application of grounded theory.
Three themes emerged: 1) Nurses support patients' hopes by understanding individual aspects of these hopes, focusing on patient quality of life, and building trust with patients; 2) Nurses provide prognostic information by assessing what the patient knows and following their lead. Nurses report doing these two activities independently; and 3) Nurses identify activities associated with the provision of prognostic information that required collaboration with physicians. Important barriers that complicate effective discussion of prognosis with patients and families were identified.
Nurses describe behaviors that are useful when meeting patients’ and families’ needs for hope and which they are comfortable implementing in practice, without collaboration with other clinicians. By contrast, most behaviors related to meeting patients’ and families’ needs regarding prognostic information are completed collaboratively with physicians. These findings provide insight for the development of interdisciplinary interventions targeting communication around end-of-life care.
Nurses’ role; hope; prognosis; end-of-life care; palliative care
Registered nurses (RNs) working in homecare encounter severely ill and palliative patients whose expressions may cause ethical challenges and influence their daily work. The aim of this qualitative study was to illuminate and interpret the meaning of nurses’ lived experiences when meeting these patients. Narrative interviews were conducted with 10 RNs working in home nursing care. These interviews were audiotaped and transcribed verbatim to a text and interpreted by a phenomenological-hermeneutic method inspired by Ricoeur. The meaning of the RNs’ lived experience of patients’ expressions was formulated into four themes. The first theme, Being open for the presence of the Other, includes two subthemes: “Sensing vulnerability” and “Empathizing with.” The second theme, Being satisfied, entails the subthemes, “Feeling exceptional” and “Being trusted.” The third theme, Being frustrated, contains the subthemes, “Being disappointed” and “Being angry.” The fourth and final theme, Being ambivalent, includes one subtheme: “Being generous or reserved.” Patients’ expressions that make impressions on nurses create emotional waves. Expressions leave impressions that call upon the nurse, and confront her with taking the risk of letting intuition and pre-reflexive feelings gain entry to her care. Allowing for the Other's presence is seen as a precondition, which means facing humanity and sensing a vulnerability in herself as well as in the Other. Understanding and balancing this emotional dimension in care seems to cause confusion and distress within the nurses. Realizing how their feelings may lead to either generosity or aloofness towards the patient is upsetting. Our interpretation suggests that these impressions echo confusion according to the role of being a professional nurse. There is a need to pay more attention to how the emotional dimension in care is understood and impacts the way nurses perform their professional role.
Nurse–patient interactions; emotional dimension; touch; home nursing care; palliative care; professional identity; phenomenological-hermeneutic approach
Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.
On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach’s alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.
A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach’s alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.
Significance of results
The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.
Decision making; Self-efficacy; End of life; Family; Scale
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).
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.
Genomics research; Interest; Interviews; Patients; Personal results
Nursing staff that work with patients with frontal lobe dementia (FLD) experience challenges that may lead to physical and psychiatric distress. The aim of this study was to capture the feelings, experiences, and reflections of the health staff regarding interactions with and caring for patients with FLD and to highlight what it means for health staff to care for patients with FLD through their daily work. This is a qualitative study with a phenomenological hermeneutic approach. Ten health staff members who work with patients with FLD were interviewed using semistructered interviews. The focus during the interview was the experiences of the staff through their everyday work. The interviews were recorded and then transcribed verbatim. The material was analyzed using a phenomenological hermeneutic approach. The result of the study identifies three themes that highlight the meaning of caregiving for patients with FLD, that is, being aware of the relationship with the patients, being insecure, and being safe. The patients’ unpredictable behaviour puts the relationship between the staff and the patients on trial. It is essential in caregiving to see the human behind the disease and the behaviour. The interest of finding new solutions in the caregiving is awakened through the relation with the patients, through reflections with colleagues, external guidance and by support from the staff leader.
Frontal lobe dementia (FLD); hermeneutics; insecurity; narrative interviews; nursing care; phenomenological; relation; safety
Objective. In Sweden, about 19% of residents have a foreign background. Previous studies reported immigrant patients experience communication difficulties despite the presence of interpreters during consultations. The objective of this study was to gain insights into the participants' perceptions and reflections of the triangular meeting by means of in-depth interviews with immigrant patients, interpreters, and general practitioners (GPs). Method. A total of 29 participants—10 patients, 9 interpreters, and 10 GPs—participated in face-to-face interviews. Content analysis was used to process the interview material. Results. Six themes were generated and arranged under two subject areas: the interpretation process (the means of interpreting and means of informing) and the meeting itself (individual tailored approaches, consultation time, the patient's feelings, and the role of family members). Conclusion. This paper highlights feelings including frustration and insecurity when interpretation and relationships are suboptimal. Strategies for immigrant patients, interpreters, and GPs for getting a successful consultation may be needed. To transform the triangular meeting from an encounter to a real meeting, our results indicate a need for professional interpreters, for GPs to use a patient-tailored approach, and sufficient consultation time. Practice Implications. Use of professional interpreters is recommended, as is developing cultural competence.