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.
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
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.
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 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
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.
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.
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.
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
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
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.
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 examine family health team (FHT) members’ perspectives and experiences of interprofessional collaboration and perceived benefits.
Qualitative case study using semistructured interviews.
Fourteen FHTs in urban and rural Ontario.
Purposeful sample of the members of 14 FHTs, including family physicians, nurse practitioners, nurses, dietitians, social workers, pharmacists, and managers.
A multiple case-study approach involving 14 FHTs was employed. Thirty-two semistructured interviews were conducted and data were analyzed by employing an inductive thematic approach. A member-checking technique was also undertaken to enhance the validity of the findings.
Five main themes are reported: rethinking traditional roles and scopes of practice, management and leadership, time and space, interprofessional initiatives, and early perceptions of collaborative care.
This study shows the importance of issues such as roles and scopes of practice, leadership, and space to effective team-based primary care, and provides a framework for understanding different types of interprofessional interventions used to support interprofessional collaboration.
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
As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers’ qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected.
This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items.
Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by “being caring and understanding”, “listening and showing respect”, and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard” were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%).
Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.
chronic illness; patient participation; mixed methods research; hospital care
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
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
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.
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.
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.
Food insecurity is an ongoing threat in rural sub-Saharan Africa and is complicated by cultural practices, the rise of chronic conditions such as HIV and land use availability. In order to develop a successful food security intervention program, it is important to be informed of the realities and needs of the target population. The purpose of this study was to pilot a qualitative method to understand food insecurity based on the lived experience of women of the Maasai population in the Ngorongoro Conservation Area of Tanzania.
Short semi-structured qualitative interviews with 4 Maasai women.
Food insecurity was present in the Maasai community: the participants revealed that they did not always have access to safe and nutritious food that met the needs of themselves and their families. Themes that emerged from the data fell into three categories: Current practices (food sources, planning for enough, food preparation, and food preservation), food Insecurity (lack of food, emotions, coping strategies, and possible solutions), and division (co-wives, food distribution, and community relationships).
This pilot study suggested the presence of food insecurity in the Maasai community. Larger sample studies are needed to clarify the extent and severity of food insecurity among this population. Having a detailed understanding of the various aspects of the food insecurity lived experience could inform a targeted intervention program.
Food security; food supply; human rights; qualitative research; Eastern Africa
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.
Spirituality; Perception; Experience; Cancer patients; Content analysis
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.
Objective To synthesise the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions.
Design Systematic review of qualitative studies of decision making and choice for dialysis, transplantation, or palliative care, and thematic synthesis of qualitative studies.
Data sources Medline, PsycINFO, CINAHL, Embase, social work abstracts, and digital theses (database inception to week 3 October 2008) to identify literature using qualitative methods (focus groups, interviews, or case studies).
Review methods Thematic synthesis involved line by line coding of the findings of the primary studies and development of descriptive and analytical themes.
Results 18 studies that reported the experiences of 375 patients and 87 carers were included. 14 studies focused on preferences for dialysis modality, three on transplantation, and one on palliative management. Four major themes were identified as being central to treatment choices: confronting mortality (choosing life or death, being a burden, living in limbo), lack of choice (medical decision, lack of information, constraints on resources), gaining knowledge of options (peer influence, timing of information), and weighing alternatives (maintaining lifestyle, family influences, maintaining the status quo).
Conclusions The experiences of other patients greatly influenced the decision making of patients and carers. The problematic timing of information about treatment options and synchronous creation of vascular access seemed to predetermine haemodialysis and inhibit choice of other treatments, including palliative care. A preference to maintain the status quo may explain why patients often remain on their initial therapy.
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.
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.
end-of-life care; physician competence; qualitative research
Families and other carers report widespread dissatisfaction with general hospital care for confused older people.
We undertook a qualitative interviews study of 35 family carers of 34 confused older patients to ascertain their experiences of care on geriatric and general medical, and orthopaedic wards of a large English hospital. Transcripts were analysed using a grounded theory approach. Themes identified in interviews were categorised, and used to build a model explaining dissatisfaction with care.
The experience of hospital care was often negative. Key themes were events (illness leading to admission, experiences in the hospital, adverse occurrences including deterioration in health, or perceived poor care); expectations (which were sometimes unrealistic, usually unexplored by staff, and largely unmet from the carers’ perspective); and relationships with staff (poor communication and conflict over care). Expectations were influenced by prior experience. A cycle of discontent is proposed. Events (or ‘crises’) are associated with expectations. When these are unmet, carers become uncertain or suspicious, which leads to a period of ‘hyper vigilant monitoring’ during which carers seek out evidence of poor care, culminating in challenge, conflict with staff, or withdrawal, itself a crisis. The cycle could be completed early during the admission pathway, and multiple cycles within a single admission were seen.
People with dementia who have family carers should be considered together as a unit. Family carers are often stressed and tired, and need engaging and reassuring. They need to give and receive information about the care of the person with dementia, and offered the opportunity to participate in care whilst in hospital. Understanding the perspective of the family carer, and recognising elements of the ‘cycle of discontent’, could help ward staff anticipate carer needs, enable relationship building, to pre-empt or avoid dissatisfaction or conflict.
Aged; Acute hospital care; Dementia; Delirium; Family carers; Satisfaction with care; Carer strain; Qualitative study; United Kingdom