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1.  Caregiver- and Patient-Directed Interventions for Dementia 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections:
Introduction
Caregiver-Directed Interventions for Dementia
Patient-Directed Interventions for Dementia
Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia
Caregiver-Directed Interventions for Dementia
Objective
To identify interventions that may be effective in supporting the well-being of unpaid caregivers of seniors with dementia living in the community.
Clinical Need: Target Population and Condition
Dementia is a progressive and largely irreversible syndrome that is characterized by a loss of cognitive function severe enough to impact social or occupational functioning. The components of cognitive function affected include memory and learning, attention, concentration and orientation, problem-solving, calculation, language, and geographic orientation. Dementia was identified as one of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home, in that approximately 90% of individuals diagnosed with dementia will be institutionalized before death. In addition, cognitive decline linked to dementia is one of the most commonly cited reasons for institutionalization.
Prevalence estimates of dementia in the Ontario population have largely been extrapolated from the Canadian Study of Health and Aging conducted in 1991. Based on these estimates, it is projected that there will be approximately 165,000 dementia cases in Ontario in the year 2008, and by 2010 the number of cases will increase by nearly 17% over 2005 levels. By 2020 the number of cases is expected to increase by nearly 55%, due to a rise in the number of people in the age categories with the highest prevalence (85+). With the increase in the aging population, dementia will continue to have a significant economic impact on the Canadian health care system. In 1991, the total costs associated with dementia in Canada were $3.9 billion (Cdn) with $2.18 billion coming from LTC.
Caregivers play a crucial role in the management of individuals with dementia because of the high level of dependency and morbidity associated with the condition. It has been documented that a greater demand is faced by dementia caregivers compared with caregivers of persons with other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia.
It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions.
Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside.
Description of Interventions
The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends.
Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural, dementia-specific, supportive, and coping interventions. The analysis focuses on behavioural interventions, that is, those designed to help the caregiver manage BPSD. As described earlier, BPSD are one of the most challenging aspects of caring for a senior with dementia, causing an increase in caregiver burden. The analysis also examines multicomponent interventions, which include at least 2 of the above-mentioned interventions.
Methods of Evidence-Based Analysis
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials (RCTs) that examined the effectiveness of interventions for caregivers of dementia patients.
Questions
Section 2.1
Are respite care services effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Do respite care services impact on rates of institutionalization of these seniors?
Section 2.2
Which psychosocial interventions are effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Which interventions reduce the risk for institutionalization of seniors with dementia?
Outcomes of Interest
any quantitative measure of caregiver psychological health, including caregiver burden, depression, quality of life, well-being, strain, mastery (taking control of one’s situation), reactivity to behaviour problems, etc.;
rate of institutionalization; and
cost-effectiveness.
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Conclusions in Table 1 are drawn from Sections 2.1 and 2.2 of the report.
Summary of Conclusions on Caregiver-Directed Interventions
There is limited evidence from RCTs that respite care is effective in improving outcomes for those caring for seniors with dementia.
There is considerable qualitative evidence of the perceived benefits of respite care.
Respite care is known as one of the key formal support services for alleviating caregiver burden in those caring for dementia patients.
Respite care services need to be tailored to individual caregiver needs as there are vast differences among caregivers and patients with dementia (severity, type of dementia, amount of informal/formal support available, housing situation, etc.)
There is moderate- to high-quality evidence that individual behavioural interventions (≥ 6 sessions), directed towards the caregiver (or combined with the patient) are effective in improving psychological health in dementia caregivers.
There is moderate- to high-quality evidence that multicomponent interventions improve caregiver psychosocial health and may affect rates of institutionalization of dementia patients.
RCT indicates randomized controlled trial.
Patient-Directed Interventions for Dementia
Objective
The section on patient-directed interventions for dementia is broken down into 4 subsections with the following questions:
3.1 Physical Exercise for Seniors with Dementia – Secondary Prevention
What is the effectiveness of physical exercise for the improvement or maintenance of basic activities of daily living (ADLs), such as eating, bathing, toileting, and functional ability, in seniors with mild to moderate dementia?
3.2 Nonpharmacologic and Nonexercise Interventions to Improve Cognitive Functioning in Seniors With Dementia – Secondary Prevention
What is the effectiveness of nonpharmacologic interventions to improve cognitive functioning in seniors with mild to moderate dementia?
3.3 Physical Exercise for Delaying the Onset of Dementia – Primary Prevention
Can exercise decrease the risk of subsequent cognitive decline/dementia?
3.4 Cognitive Interventions for Delaying the Onset of Dementia – Primary Prevention
Does cognitive training decrease the risk of cognitive impairment, deterioration in the performance of basic ADLs or instrumental activities of daily living (IADLs),1 or incidence of dementia in seniors with good cognitive and physical functioning?
Clinical Need: Target Population and Condition
Secondary Prevention2
Exercise
Physical deterioration is linked to dementia. This is thought to be due to reduced muscle mass leading to decreased activity levels and muscle atrophy, increasing the potential for unsafe mobility while performing basic ADLs such as eating, bathing, toileting, and functional ability.
Improved physical conditioning for seniors with dementia may extend their independent mobility and maintain performance of ADL.
Nonpharmacologic and Nonexercise Interventions
Cognitive impairments, including memory problems, are a defining feature of dementia. These impairments can lead to anxiety, depression, and withdrawal from activities. The impact of these cognitive problems on daily activities increases pressure on caregivers.
Cognitive interventions aim to improve these impairments in people with mild to moderate dementia.
Primary Prevention3
Exercise
Various vascular risk factors have been found to contribute to the development of dementia (e.g., hypertension, hypercholesterolemia, diabetes, overweight).
Physical exercise is important in promoting overall and vascular health. However, it is unclear whether physical exercise can decrease the risk of cognitive decline/dementia.
Nonpharmacologic and Nonexercise Interventions
Having more years of education (i.e., a higher cognitive reserve) is associated with a lower prevalence of dementia in crossectional population-based studies and a lower incidence of dementia in cohorts followed longitudinally. However, it is unclear whether cognitive training can increase cognitive reserve or decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs or reduce the incidence of dementia.
Description of Interventions
Physical exercise and nonpharmacologic/nonexercise interventions (e.g., cognitive training) for the primary and secondary prevention of dementia are assessed in this review.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and RCTs that examined the effectiveness, safety and cost effectiveness of exercise and cognitive interventions for the primary and secondary prevention of dementia.
Questions
Section 3.1: What is the effectiveness of physical exercise for the improvement or maintenance of ADLs in seniors with mild to moderate dementia?
Section 3.2: What is the effectiveness of nonpharmacologic/nonexercise interventions to improve cognitive functioning in seniors with mild to moderate dementia?
Section 3.3: Can exercise decrease the risk of subsequent cognitive decline/dementia?
Section 3.4: Does cognitive training decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs, or reduce the incidence of dementia in seniors with good cognitive and physical functioning?
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology. As per GRADE the following definitions apply:
Summary of Findings
Table 2 summarizes the conclusions from Sections 3.1 through 3.4.
Summary of Conclusions on Patient-Directed Interventions*
Previous systematic review indicated that “cognitive training” is not effective in patients with dementia.
A recent RCT suggests that CST (up to 7 weeks) is effective for improving cognitive function and quality of life in patients with dementia.
Regular leisure time physical activity in midlife is associated with a reduced risk of dementia in later life (mean follow-up 21 years).
Regular physical activity in seniors is associated with a reduced risk of cognitive decline (mean follow-up 2 years).
Regular physical activity in seniors is associated with a reduced risk of dementia (mean follow-up 6–7 years).
Evidence that cognitive training for specific functions (memory, reasoning, and speed of processing) produces improvements in these specific domains.
Limited inconclusive evidence that cognitive training can offset deterioration in the performance of self-reported IADL scores and performance assessments.
1° indicates primary; 2°, secondary; CST, cognitive stimulation therapy; IADL, instrumental activities of daily living; RCT, randomized controlled trial.
Benefit/Risk Analysis
As per the GRADE Working Group, the overall recommendations consider 4 main factors:
the trade-offs, taking into account the estimated size of the effect for the main outcome, the confidence limits around those estimates, and the relative value placed on the outcome;
the quality of the evidence;
translation of the evidence into practice in a specific setting, taking into consideration important factors that could be expected to modify the size of the expected effects such as proximity to a hospital or availability of necessary expertise; and
uncertainty about the baseline risk for the population of interest.
The GRADE Working Group also recommends that incremental costs of health care alternatives should be considered explicitly alongside the expected health benefits and harms. Recommendations rely on judgments about the value of the incremental health benefits in relation to the incremental costs. The last column in Table 3 reflects the overall trade-off between benefits and harms (adverse events) and incorporates any risk/uncertainty (cost-effectiveness).
Overall Summary Statement of the Benefit and Risk for Patient-Directed Interventions*
Economic Analysis
Budget Impact Analysis of Effective Interventions for Dementia
Caregiver-directed behavioural techniques and patient-directed exercise programs were found to be effective when assessing mild to moderate dementia outcomes in seniors living in the community. Therefore, an annual budget impact was calculated based on eligible seniors in the community with mild and moderate dementia and their respective caregivers who were willing to participate in interventional home sessions. Table 4 describes the annual budget impact for these interventions.
Annual Budget Impact (2008 Canadian Dollars)
Assumed 7% prevalence of dementia aged 65+ in Ontario.
Assumed 8 weekly sessions plus 4 monthly phone calls.
Assumed 12 weekly sessions plus biweekly sessions thereafter (total of 20).
Assumed 2 sessions per week for first 5 weeks. Assumed 90% of seniors in the community with dementia have mild to moderate disease. Assumed 4.5% of seniors 65+ are in long-term care, and the remainder are in the community. Assumed a rate of participation of 60% for both patients and caregivers and of 41% for patient-directed exercise. Assumed 100% compliance since intervention administered at the home. Cost for trained staff from Ministry of Health and Long-Term Care data source. Assumed cost of personal support worker to be equivalent to in-home support. Cost for recreation therapist from Alberta government Website.
Note: This budget impact analysis was calculated for the first year after introducing the interventions from the Ministry of Health and Long-Term Care perspective using prevalence data only. Prevalence estimates are for seniors in the community with mild to moderate dementia and their respective caregivers who are willing to participate in an interventional session administered at the home setting. Incidence and mortality rates were not factored in. Current expenditures in the province are unknown and therefore were not included in the analysis. Numbers may change based on population trends, rate of intervention uptake, trends in current programs in place in the province, and assumptions on costs. The number of patients was based on patients likely to access these interventions in Ontario based on assumptions stated below from the literature. An expert panel confirmed resource consumption.
PMCID: PMC3377513  PMID: 23074509
2.  Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study 
PLoS Medicine  2012;9(2):e1001173.
In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.
Background
In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.
Methods and Findings
Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.
Conclusions
Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.
Why Was This Study Done?
There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.
What Did the Researchers Do and Find?
The researchers modified an anthropological approach to collect relevant information in participating European countries—Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK—and Argentina and New Zealand. Staff in palliative care settings generated a list of non-pharmacological caregiving activities after discussion about which interventions and activities they carried out with patients and families during the last days of life. This preliminary list of statements was added to if staff performed a new activity when in contact with patients or the patients' family during the last days of life. The researchers then used computer-assisted qualitative data analysis to code the statements.
Using this methodology, the researchers analyzed 914 statements of caregiving activities from 16 different facilities in nine countries. The greatest number of activities described some type of caregiving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs (such as cleaning and moisturizing) while maintaining comfort and dignity. Listening, talking with, and understanding (particularly between professionals and the family) was the next most frequent activity, followed by creating an esthetical, safe, and pleasing environment for the dying person and his or her family, and necessary “backstage” activities, such as organizing paperwork or care plans. Other common activities included observing and assessing, which were often described as being carried out simultaneously with other interventions; just being present (described as increasingly important close to death); performing rituals surrounding death and dying (usually directed to families); guiding and facilitating (encompassing support in a compassionate manner); and finally, giving oral and written information and advice (usually to families).
What Do These Findings Mean?
These findings show that providing for fundamental human needs close to death is complex and sophisticated but ultimately integrated into a common theme of caregiving. This study also identifies a number of areas needing further investigation, such as enhancing the sensory and general environment for the patient and family. Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001173.
The OPCARE9 website details more information about this end-of-life care initiative
The World Health Organization website defines palliative care, and Wikipedia gives more information (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
NHS Choices also provides information about end-of-life care
doi:10.1371/journal.pmed.1001173
PMCID: PMC3279347  PMID: 22347815
3.  Compassion Fatigue: An Application of the Concept to Informal Caregivers of Family Members with Dementia 
Nursing Research and Practice  2011;2011:408024.
Introduction. Compassion fatigue is a concept used with increasing frequency in the nursing literature. The objective of this paper is to identify common themes across the literature and to apply these themes, and an existing model of compassion fatigue, to informal caregivers for family members with dementia. Findings. Caregivers for family members with dementia may be at risk for developing compassion fatigue. The model of compassion fatigue provides an informative framework for understanding compassion fatigue in the informal caregiver population. Limitations of the model when applied to this population were identified as traumatic memories and the emotional relationship between parent and child, suggesting areas for future research. Conclusions. Research is needed to better understand the impact of compassion fatigue on informal caregivers through qualitative interviews, to identify informal caregivers at risk for compassion fatigue, and to provide an empirical basis for developing nursing interventions for caregivers experiencing compassion fatigue.
doi:10.1155/2011/408024
PMCID: PMC3170786  PMID: 22229086
4.  Deployment of assistive living technology in a nursing home environment: methods and lessons learned 
Background
With an ever-growing ageing population, dementia is fast becoming the chronic disease of the 21st century. Elderly people affected with dementia progressively lose their autonomy as they encounter problems in their Activities of Daily Living (ADLs). Hence, they need supervision and assistance from their family members or professional caregivers, which can often lead to underestimated psychological and financial stress for all parties. The use of Ambient Assistive Living (AAL) technologies aims to empower people with dementia and relieve the burden of their caregivers.
The aim of this paper is to present the approach we have adopted to develop and deploy a system for ambient assistive living in an operating nursing home, and evaluate its performance and usability in real conditions. Based on this approach, we emphasise on the importance of deployments in real world settings as opposed to prototype testing in laboratories.
Methods
We chose to conduct this work in close partnership with end-users (dementia patients) and specialists in dementia care (professional caregivers). Our trial was conducted during a period of 14 months within three rooms in a nursing home in Singapore, and with the participation of eight dementia patients and two caregivers. A technical ambient assistive living solution, consisting of a set of sensors and devices controlled by a software platform, was deployed in the collaborating nursing home. The trial was preceded by a pre-deployment period to organise several observation sessions with dementia patients and focus group discussions with professional caregivers. A process of ground truth and system’s log data gathering was also planned prior to the trial and a system performance evaluation was realised during the deployment period with the help of caregivers. An ethical approval was obtained prior to real life deployment of our solution.
Results
Patients’ observations and discussions allowed us to gather a set of requirements that a system for elders with mild-dementia should fulfil. In fact, our deployment has exposed more concrete requirements and problems that need to be addressed, and which cannot be identified in laboratory testing. Issues that were neither forecasted during the design phase nor during the laboratory testing surfaced during deployment, thus affecting the effectiveness of the proposed solution. Results of the system performance evaluation show the evolution of system precision and uptime over the deployment phases, while data analysis demonstrates the ability to provide early detection of the degradation of patients’ conditions. A qualitative feedback was collected from caregivers and doctors and a set of lessons learned emerged from this deployment experience. (Continued on next page) (Continued from previous page)
Conclusion
Lessons learned from this study were very useful for our research work and can serve as inspiration for developers and providers of assistive living services. They confirmed the importance of real deployment to evaluate assistive solutions especially with the involvement of professional caregivers. They also asserted the need for larger deployments. Larger deployments will allow to conduct surveys on assistive solutions social and health impact, even though they are time and manpower consuming during their first phases.
doi:10.1186/1472-6947-13-42
PMCID: PMC3691578  PMID: 23565984
Ambient assistive living; Dementia assistance; Real life deployment; Dynamic and adaptable systems; Context aware services
5.  Iranian nurses’ experiences of brain dead donors care in intensive care units: A phenomenological study 
Background:
Care of brain dead donors is complex, critical, and sensitive and has a direct and positive impact on the end result of organ and tissue transplantation process. This study describes the nurses’ experiences of care of brain dead donors in intensive care units (ICU).
Materials and Methods:
This research was performed by phenomenological method that is a qualitative approach. Purposive sampling was used to gather the data. The researcher reached to data saturation by deep interviews conducted with eight participants from ICU nurses in Isfahan hospitals who cooperated in care of brain dead donors. Data analysis was performed according to Colaizzi analysis method.
Results:
Interviews were analyzed and the results of analysis led to “Excruciating tasks” as the main theme formed by psychological effects of facing the situation, heavy and stressful care, defect of scientific knowledge, conflict between feeling and duty, outcome of attitude change in behavior, emotional responses to perceived psychological afflictions, doubt to medical diagnosis, spiritual perceptions, and biological responses when faced with the situation.
Conclusion:
Caring of brain dead organ donors is difficult and stressful for intensive care nurses and can be a threat for nurses’ health and quality of nursing care. So, providing suitable physical, mental, and working conditions is necessary to make suitable background to maintain and increase nurses’ health and quality of care and effective cooperation of this group of health professionals in organ procurement process.
PMCID: PMC3917131  PMID: 24554946
Brain dead donor; nurses’ experiences; organ donation; organ procurement; intensive care unit; Iran
6.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Background
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
Conclusions
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Background
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001331.
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
doi:10.1371/journal.pmed.1001331
PMCID: PMC3484131  PMID: 23118618
7.  Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis 
Background
The evidence base for a range of psychosocial and behavioural interventions in managing and supporting patients with long-term conditions (LTCs) is now well-established. With increasing numbers of such patients being managed in primary care, and a shortage of specialists in psychology and behavioural management to deliver interventions, therapeutic interventions are increasingly being delivered by general nurses with limited training in psychological interventions. It is unknown what issues this raises for the nurses or their patients. The purpose of the study was to examine the challenges faced by non-specialist nurses when delivering psychological interventions for an LTC (chronic fatigue syndrome/myalgic encephalomyelitis [CFS/ME]) within a primary care setting.
Methods
A qualitative study nested within a randomised controlled trial [ISRCTN 74156610] explored the experiences and acceptability of two different psychological interventions (pragmatic rehabilitation and supportive listening) from the perspectives of nurses, their supervisors, and patients. Semi structured in-depth interviews were conducted with three nurse therapists, three supervisors, and 46 patients. An iterative approach was used to develop conceptual categories from the dataset.
Results
Analyses identified four sets of challenges that were common to both interventions: (i) being a novice therapist, (ii) engaging patients in the therapeutic model, (iii) dealing with emotions, and (iv) the complexity of primary care. Each challenge had the potential to cause tension between therapist and patient. A number of strategies were developed by participants to manage the tensions.
Conclusions
Tensions existed for nurses when attempting to deliver psychological interventions for patients with CFS/ME in this primary care trial. Such tensions should be addressed before implementing psychological interventions within routine clinical practice. Similar tensions may be found for other LTCs. Our findings have implications for developing therapeutic alliances and highlight the need for regular supervision.
doi:10.1186/1748-5908-6-132
PMCID: PMC3259041  PMID: 22192566
8.  Distress and quality of life after autologous stem cell transplantation: a randomized clinical trial to evaluate the outcome of a web-based stepped care intervention 
BMC Cancer  2010;10:361.
Background
Psychological distress (i.e. depression and anxiety) is a strong predictor of functional status and other aspects of quality of life in autologous stem cell transplantation following high-dose chemotherapy. Treatment of psychological distress is hypothesized to result in improvement of functional status and other aspects of quality of life. The aim is to evaluate the outcome of stepped care for psychological distress on functional status and other aspects of quality of life in patients with hematological malignancy treated with autologous stem cell transplantation.
Methods/Design
The study is designed as a randomized clinical trial with 2 treatment arms: a stepped care intervention program versus care as usual. Patients are randomized immediately pre transplant. Stepped care and care as usual are initiated after a 6 weeks buffer period. Outcome is evaluated at 13, 30, and 42 weeks post transplant.
In the experimental group, the first step includes an Internet-based self-help program. If psychological distress persists after the self-help intervention, the second step of the program is executed, i.e. a diagnostic evaluation and a standardized interview, yielding a problem analysis. Based on this information, a contract is made with the patient and treatment is provided consisting of individual face-to-face counseling, medication, or referral to other services. Care as usual comprises an interview with the patient, on ad hoc basis; emotional support and advice, on ad hoc basis; if urgent problems emerge, the patient is referred to other services.
Primary outcome variables are psychological distress and functional status. Data are analyzed according to the intention to treat-principle.
Discussion
This study has several innovative characteristics. First, the outcome of the intervention for psychological distress in patients with hematological malignancy treated with autologous stem cell transplantation is evaluated in a randomized controlled study. Second, the impact of the intervention on functional status is evaluated: it is hypothesized that reduction of psychological distress results in improved functional status. Furthermore, the intervention concerns an Internet-based treatment in the first step. Finally, the intervention is characterized by an emphasis on self-management, efficiency, and a multi-disciplinary approach with nurses taking up a central role.
Trial Registration
NTR1770
doi:10.1186/1471-2407-10-361
PMCID: PMC2913960  PMID: 20609251
9.  Distress Screening in Allogeneic Hematopoietic Stem Cell (HSCT) Caregivers and Patients 
Psycho-oncology  2011;20(6):615-622.
Family caregivers of allogeneic hematopoietic stem cell transplant (HSCT) patients are at risk for experiencing significant psychological distress yet screening caregivers has not been well studied.
Objective
This analysis explored the psychometric characteristics of the Distress Thermometer (DT) by examining its relationship, sensitivity and specificity relative to the Brief Symptom Inventory 18 (BSI-18) and the Multidimensional Fatigue Symptom Inventory (MFSI) in a sample of allogeneic HSCT caregivers and patients.
Methods
Longitudinal data were drawn from an ongoing intervention study for HSCT caregivers and patients. Data from one hundred and fifty-six English-speaking adults where patients (n=65) were receiving their first allogeneic HSCT with at least one adult caregiver (n=91) were eligible for this analysis. Study questionnaires were administered at baseline, initial discharge and 6 weeks following discharge.
Results
Construct validity was supported by significant relationships (p<0.001) between the DT and the BSI-18 GSI and the MFSI-Emotional subscales for caregivers and patients. The diagnostic utility of the DT for patients was good (AUC=.85±.05, p=.001), while for caregivers it was poor (AUC=.61±.08, p=.28). A DT cut point of 5 was supported for patients (sensitivity=1.0, specificity=.68), while for caregivers there was less confidence (sensitivity=.70, specificity=.52). Caregivers and patients reporting a higher number of problems had a greater level of distress (p<0.001).
Conclusions
These findings support the validity of the DT in screening for distress in HSCT caregivers and patients. Although the diagnostic utility of the DT for HSCT caregivers may be limited, understanding factors associated with distress can guide practice for this understudied population.
doi:10.1002/pon.1906
PMCID: PMC3105246  PMID: 21626610
Cancer; Oncology; Distress Thermometer; Distress screening; Validity; Accuracy
10.  A Randomised Controlled Trial of Ion-Exchange Water Softeners for the Treatment of Eczema in Children 
PLoS Medicine  2011;8(2):e1000395.
In a randomized trial evaluating the effect of installation of ion-exchange water softeners in the households of children with eczema, the researchers found no evidence of improvement in eczema severity as compared to usual care in the study population.
Background
Epidemiological studies and anecdotal reports suggest a possible link between household use of hard water and atopic eczema. We sought to test whether installation of an ion-exchange water softener in the home can improve eczema in children.
Methods and Findings
This was an observer-blind randomised trial involving 336 children (aged 6 months to 16 years) with moderate/severe atopic eczema. All lived in hard water areas (≥200 mg/l calcium carbonate). Participants were randomised to either installation of an ion-exchange water softener plus usual eczema care, or usual eczema care alone. The primary outcome was change in eczema severity (Six Area Six Sign Atopic Dermatitis Score, SASSAD) at 12 weeks, measured by research nurses who were blinded to treatment allocation. Analysis was based on the intent-to-treat population. Eczema severity improved for both groups during the trial. The mean change in SASSAD at 12 weeks was −5.0 (20% improvement) for the water softener group and −5.7 (22% improvement) for the usual care group (mean difference 0.66, 95% confidence interval −1.37 to 2.69, p = 0.53). No between-group differences were noted in the use of topical corticosteroids or calcineurin inhibitors.
Conclusions
Water softeners provided no additional benefit to usual care in this study population. Small but statistically significant differences were found in some secondary outcomes as reported by parents, but it is likely that such improvements were the result of response bias, since participants were aware of their treatment allocation. A detailed report for this trial is also available at http://www.hta.ac.uk.
Trial registration
Current Controlled Trials ISRCTN71423189
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Eczema (sometimes referred to as atopic dermatitis) is a chronic, inflammatory skin condition that affects about 20% of school children in developed countries. Eczema is often associated with other conditions, such as asthma, hay-fever and food allergy and can cause intractable itching leading to thickened skin, bleeding, secondary infection, sleep loss, poor concentration, and psychological distress. Current topical treatments for eczema have side effects, for example, topical corticosteroids may cause skin thinning and the long term safety of topical tacrolimus and pimecrolimus has yet to be determined. Therefore, there is a lot of interest in exploring the benefits of non-pharmacological treatments that have no apparent side effects.
Water hardness (≥200 mg/l calcium carbonate) has become a recent focus of attention.
Why Was This Study Done?
In addition to some epidemiological evidence linking increased water hardness with increased eczema prevalence, there have been widespread anecdotal reports of improvement in the skin of children with eczema when the family has moved from a hard to a soft water area. In addition, some patients report how their eczema symptoms have rapidly improved following the installation of a water softener. However, to date there have been no relevant published trials evaluating the potential benefit of water softeners for eczema. Given the lack of evidence, the high public interest in their potential benefit and the low risk of adverse effects, the researcher conducted a study to assess whether the installation of an ion-exchange water softener reduces the severity of eczema in children with moderate to severe eczema.
What Did the Researchers Do and Find?
The researchers did a pilot study that showed that it was not possible to blind participants to their treatment allocation using real and “dummy” water softener units because the softened water produced more soap suds. So the researchers conducted an observer-blind randomised controlled trial in which they used trained research nurses to conduct an objective assessment of every participant's skin. The researchers recruited 336 children who all lived in hard water areas in England. Eligible children were aged 6 months to 16 years who had a diagnosis of eczema (in line with the UK working party's diagnostic criteria) and an eczema severity score of 10 or over. Participants were randomised to either installation of an ion-exchange water softener plus usual eczema care, or usual eczema care alone. Trained research nurses examined each child's skin at baseline and at 6, 12, and 16 weeks to record changes in eczema severity. The researchers also analysed any changes in symptoms over the study period such as, sleep loss and itchiness, the amount of topical corticosteroid/calcineurin inhibitors used, the Dermatitis Family Impact questionnaire and the health related Quality of Life (children's version).
Although both treatment groups improved in disease severity during the course of the trial, the researchers found no difference between the treatment groups in the main outcome—eczema severity. Similar finding were found for night movement (scratching) and the use of topical medications (creams/ointments applied to the skin), both of which were blinded to intervention status. Nevertheless, parents in the trial did report small health benefits, and just over 50% chose to buy the water softener at the end of the trial because of perceived improvements in the eczema and the wider benefits of water softeners. It is unclear how much of this effect can be explained by prior belief in the effectiveness of the water softeners for the treatment of eczema.
What Do These Findings Mean?
The results of this study suggest that water softeners provide no additional clinical benefit to usual care in children with eczema so the use of ion-exchange water softeners for the treatment of moderate to severe eczema in children should not be recommended. However, it is up to each family to decide whether or not the wider benefits of installing a water softener in their home are sufficient to consider buying one.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000395.
The UK's NHS presents information on eczema for patients and families
MedlinePlus gives information for patients, families, and caregivers on eczema and other similar conditions
The National Eczema Society in the UK provides information and a helpline for eczema patients, families, and caregivers
Medinfo provides information for eczema patients
Wikipedia has more information about water softening (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
doi:10.1371/journal.pmed.1000395
PMCID: PMC3039684  PMID: 21358807
11.  Work factors and psychological distress in nurses' aides: a prospective cohort study 
BMC Public Health  2006;6:290.
Background
Nurses' aides (assistant nurses), the main providers of practical patient care in many countries, are doing both emotional and heavy physical work, and are exposed to frequent social encounters in their job. There is scarce knowledge, though, of how working conditions are related to psychological distress in this occupational group. The aim of this study was to identify work factors that predict the level of psychological distress in nurses' aides.
Methods
The sample of this prospective study comprised 5076 Norwegian nurses' aides, not on leave when they completed a mailed questionnaire in 1999. Of these, 4076 (80.3 %) completed a second questionnaire 15 months later. A wide spectrum of physical, psychological, social, and organisational work factors were measured at baseline. Psychological distress (anxiety and depression) was assessed at baseline and follow-up by the SCL-5, a short version of Hopkins Symptom Checklist-25.
Results
In a linear regression model of the level of psychological distress at follow-up, with baseline level of psychological distress, work factors, and background factors as independent variables, work factors explained 2 % and baseline psychological distress explained 34 % of the variance. Exposures to role conflicts, exposures to threats and violence, working in apartment units for the aged, and changes in the work situation between baseline and follow-up that were reported to result in less support and encouragement were positively associated with the level of psychological distress. Working in psychiatric departments, and changes in the work situation between baseline and follow-up that gave lower work pace were negatively associated with psychological distress.
Conclusion
The study suggests that work factors explain only a modest part of the psychological distress in nurses' aides. Exposures to role conflicts and threats and violence at work may contribute to psychological distress in nurses' aides. It is important that protective measures against violent patients are implemented, and that occupational health officers offer victims of violence appropriate support or therapy. It is also important that health service organisations focus on reducing role conflicts, and that leaders listen to and consider the views of the staff.
doi:10.1186/1471-2458-6-290
PMCID: PMC1693921  PMID: 17132172
12.  How does it really feel to be in my shoes? Patients' experiences of compassion within nursing care and their perceptions of developing compassionate nurses 
Journal of Clinical Nursing  2014;23(19-20):2790-2799.
Aims and objectives
To understand how patients experience compassion within nursing care and explore their perceptions of developing compassionate nurses.
Background
Compassion is a fundamental part of nursing care. Individually, nurses have a duty of care to show compassion; an absence can lead to patients feeling devalued and lacking in emotional support. Despite recent media attention, primary research around patients' experiences and perceptions of compassion in practice and its development in nursing care remains in short supply.
Design
A qualitative exploratory descriptive approach.
Methods
In-depth, semi-structured interviews were conducted with a purposive sample of 10 patients in a large teaching hospital in the United Kingdom. Interviews were digitally recorded and transcribed verbatim. Thematic networks were used in analysis.
Results
Three overarching themes emerged from the data: (1) what is compassion: knowing me and giving me your time, (2) understanding the impact of compassion: how it feels in my shoes and (3) being more compassionate: communication and the essence of nursing.
Conclusion
Compassion from nursing staff is broadly aligned with actions of care, which can often take time. However, for some, this element of time needs only be fleeting to establish a compassionate connection. Despite recent calls for the increased focus compassion at all levels in nurse education and training, patient opinion was divided on whether it can be taught or remains a moral virtue. Gaining understanding of the impact of uncompassionate actions presents an opportunity to change both individual and cultural behaviours.
Relevance to clinical practice
It comes as a timely reminder that the smallest of nursing actions can convey compassion. Introducing vignettes of real-life situations from the lens of the patient to engage practitioners in collaborative learning in the context of compassionate nursing could offer opportunities for valuable and legitimate professional development.
doi:10.1111/jocn.12537
PMCID: PMC4263156  PMID: 24479676
compassion; empathy; interviews; nursing care; patients' experience; patients' perceptions
13.  Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
Objective
To assess the effectiveness of behavioural interventions for the treatment and management of urinary incontinence (UI) in community-dwelling seniors.
Clinical Need: Target Population and Condition
Urinary incontinence defined as “the complaint of any involuntary leakage of urine” was identified as 1 of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home. Urinary incontinence is a health problem that affects a substantial proportion of Ontario’s community-dwelling seniors (and indirectly affects caregivers), impacting their health, functioning, well-being and quality of life. Based on Canadian studies, prevalence estimates range from 9% to 30% for senior men and nearly double from 19% to 55% for senior women. The direct and indirect costs associated with UI are substantial. It is estimated that the total annual costs in Canada are $1.5 billion (Cdn), and that each year a senior living at home will spend $1,000 to $1,500 on incontinence supplies.
Interventions to treat and manage UI can be classified into broad categories which include lifestyle modification, behavioural techniques, medications, devices (e.g., continence pessaries), surgical interventions and adjunctive measures (e.g., absorbent products).
The focus of this review is behavioural interventions, since they are commonly the first line of treatment considered in seniors given that they are the least invasive options with no reported side effects, do not limit future treatment options, and can be applied in combination with other therapies. In addition, many seniors would not be ideal candidates for other types of interventions involving more risk, such as surgical measures.
Note: It is recognized that the terms “senior” and “elderly” carry a range of meanings for different audiences; this report generally uses the former, but the terms are treated here as essentially interchangeable.
Description of Technology/Therapy
Behavioural interventions can be divided into 2 categories according to the target population: caregiver-dependent techniques and patient-directed techniques. Caregiver-dependent techniques (also known as toileting assistance) are targeted at medically complex, frail individuals living at home with the assistance of a caregiver, who tends to be a family member. These seniors may also have cognitive deficits and/or motor deficits. A health care professional trains the senior’s caregiver to deliver an intervention such as prompted voiding, habit retraining, or timed voiding. The health care professional who trains the caregiver is commonly a nurse or a nurse with advanced training in the management of UI, such as a nurse continence advisor (NCA) or a clinical nurse specialist (CNS).
The second category of behavioural interventions consists of patient-directed techniques targeted towards mobile, motivated seniors. Seniors in this population are cognitively able, free from any major physical deficits, and motivated to regain and/or improve their continence. A nurse or a nurse with advanced training in UI management, such as an NCA or CNS, delivers the patient-directed techniques. These are often provided as multicomponent interventions including a combination of bladder training techniques, pelvic floor muscle training (PFMT), education on bladder control strategies, and self-monitoring. Pelvic floor muscle training, defined as a program of repeated pelvic floor muscle contractions taught and supervised by a health care professional, may be employed as part of a multicomponent intervention or in isolation.
Education is a large component of both caregiver-dependent and patient-directed behavioural interventions, and patient and/or caregiver involvement as well as continued practice strongly affect the success of treatment. Incontinence products, which include a large variety of pads and devices for effective containment of urine, may be used in conjunction with behavioural techniques at any point in the patient’s management.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials that examined the effectiveness, safety, and cost-effectiveness of caregiver-dependent and patient-directed behavioural interventions for the treatment of UI in community-dwelling seniors (see Appendix 1).
Research Questions
Are caregiver-dependent behavioural interventions effective in improving UI in medically complex, frail community-dwelling seniors with/without cognitive deficits and/or motor deficits?
Are patient-directed behavioural interventions effective in improving UI in mobile, motivated community-dwelling seniors?
Are behavioural interventions delivered by NCAs or CNSs in a clinic setting effective in improving incontinence outcomes in community-dwelling seniors?
Assessment of Quality of Evidence
The quality of the evidence was assessed as high, moderate, low, or very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Executive Summary Table 1 summarizes the results of the analysis.
The available evidence was limited by considerable variation in study populations and in the type and severity of UI for studies examining both caregiver-directed and patient-directed interventions. The UI literature frequently is limited to reporting subjective outcome measures such as patient observations and symptoms. The primary outcome of interest, admission to a LTC home, was not reported in the UI literature. The number of eligible studies was low, and there were limited data on long-term follow-up.
Summary of Evidence on Behavioural Interventions for the Treatment of Urinary Incontinence in Community-Dwelling Seniors
Prompted voiding
Habit retraining
Timed voiding
Bladder training
PFMT (with or without biofeedback)
Bladder control strategies
Education
Self-monitoring
CI refers to confidence interval; CNS, clinical nurse specialist; NCA, nurse continence advisor; PFMT, pelvic floor muscle training; RCT, randomized controlled trial; WMD, weighted mean difference; UI, urinary incontinence.
Economic Analysis
A budget impact analysis was conducted to forecast costs for caregiver-dependent and patient-directed multicomponent behavioural techniques delivered by NCAs, and PFMT alone delivered by physiotherapists. All costs are reported in 2008 Canadian dollars. Based on epidemiological data, published medical literature and clinical expert opinion, the annual cost of caregiver-dependent behavioural techniques was estimated to be $9.2 M, while the annual costs of patient-directed behavioural techniques delivered by either an NCA or physiotherapist were estimated to be $25.5 M and $36.1 M, respectively. Estimates will vary if the underlying assumptions are changed.
Currently, the province of Ontario absorbs the cost of NCAs (available through the 42 Community Care Access Centres across the province) in the home setting. The 2007 Incontinence Care in the Community Report estimated that the total cost being absorbed by the public system of providing continence care in the home is $19.5 M in Ontario. This cost estimate included resources such as personnel, communication with physicians, record keeping and product costs. Clinic costs were not included in this estimation because currently these come out of the global budget of the respective hospital and very few continence clinics actually exist in the province. The budget impact analysis factored in a cost for the clinic setting, assuming that the public system would absorb the cost with this new model of community care.
Considerations for Ontario Health System
An expert panel on aging in the community met on 3 occasions from January to May 2008, and in part, discussed treatment of UI in seniors in Ontario with a focus on caregiver-dependent and patient-directed behavioural interventions. In particular, the panel discussed how treatment for UI is made available to seniors in Ontario and who provides the service. Some of the major themes arising from the discussions included:
Services/interventions that currently exist in Ontario offering behavioural interventions to treat UI are not consistent. There is a lack of consistency in how seniors access services for treatment of UI, who manages patients and what treatment patients receive.
Help-seeking behaviours are important to consider when designing optimal service delivery methods.
There is considerable social stigma associated with UI and therefore there is a need for public education and an awareness campaign.
The cost of incontinent supplies and the availability of NCAs were highlighted.
Conclusions
There is moderate-quality evidence that the following interventions are effective in improving UI in mobile motivated seniors:
Multicomponent behavioural interventions including a combination of bladder training techniques, PFMT (with or without biofeedback), education on bladder control strategies and self-monitoring techniques.
Pelvic floor muscle training alone.
There is moderate quality evidence that when behavioural interventions are led by NCAs or CNSs in a clinic setting, they are effective in improving UI in seniors.
There is limited low-quality evidence that prompted voiding may be effective in medically complex, frail seniors with motivated caregivers.
There is insufficient evidence for the following interventions in medically complex, frail seniors with motivated caregivers:
habit retraining, and
timed voiding.
PMCID: PMC3377527  PMID: 23074508
14.  Exploring Spirituality in Family Caregivers of Patients With Primary Malignant Brain Tumors Across the Disease Trajectory 
Oncology nursing forum  2013;40(3):10.1188/13.ONF.E119-E125.
Purpose/Objectives
To determine whether the perceived level of spirituality in family caregivers of patients with primary malignant brain tumors (PMBTs) changes across the disease trajectory.
Design
Ongoing descriptive, longitudinal study.
Setting
Southwestern Pennsylvania.
Sample
50 family caregivers of patients with PMBT.
Methods
Caregivers and care recipients were recruited at time of diagnosis. Participants were interviewed at two subse-quent time points, four and eight months following diagnosis.
Main Research Variables
Care recipients’ symptoms, neuro-psychologic status, and physical function, as well as caregiver social support.
Findings
Results showed no significant difference in spirituality scores reported at baseline and eight months (p = 0.8), suggesting that spirituality may be a stable trait across the disease trajectory.
Conclusions
Spirituality remains relatively stable along the course of the disease trajectory. Reports of caregiver depressive symptoms and anxiety were lower when paired with higher reports of spirituality.
Implications for Nursing
Clinicians can better identify caregivers at risk for negative outcomes by identifying those who report lower levels of spirituality. Future interventions should focus on the development and implementation of interventions that provide protective buffers such as increased social support.
Knowledge Translation
Spirituality is a relatively stable trait. High levels of spirituality can serve as a protective buffer from negative mental health outcomes. Caregivers with low levels of spirituality may be at risk for greater levels of burden, anxiety, and stress.
doi:10.1188/13.ONF.E119-E125
PMCID: PMC3880559  PMID: 23615145
15.  A nurse- and peer-led support program to assist women in gynaecological oncology receiving curative radiotherapy, the PeNTAGOn study (Peer and nurse support trial to assist women in gynaecological oncology): study protocol for a randomised controlled trial 
Trials  2013;14:39.
Background
Women who undergo radiotherapy for gynaecological cancer (GC) can experience distressing side effects which impact on psychosocial functioning and intimate relationships. Cancer-related distress may be ameliorated by comprehensive preparation for treatment and addressing women’s informational, physical, psychological and psychosexual needs. This paper describes the protocol for a multisite randomised controlled trial (RCT) testing a novel intervention package which combines tailored specialist nursing consultations and telephone peer support with the primary aim to reduce psychological distress. Secondary aims assess patient quality of life, symptom distress, unmet supportive care needs, preparation for treatment, psychosexual functioning and vaginal stenosis.
Methods/design
This multifaceted intervention comprises four nurse-led consultations coupled with four phone calls from a peer support volunteer (GC survivor). The evidence-based intervention will be delivered at critical points in the illness trajectory: pre-treatment, mid-treatment, treatment completion and post-treatment. Nurses and peers undergo 2-day intensive training workshops, are guided by comprehensive study intervention manuals and receive ongoing supervision and support. Eligible patients will have a diagnosis of GC, be scheduled to receive curative radiotherapy, be aged 18 years or over and speak English. Three-hundred and six participants will be randomized to receive usual care or usual care with the intervention package. Study outcome measures will be collected at baseline, day 1 of radiotherapy and 1, 6 and 12 months post radiotherapy. Clinical assessments of vaginal toxicity will occur at baseline, and 3, 6, and 12 months post radiotherapy.
Discussion
This timely research has the potential to substantially reduce the physical, psychosexual and supportive care needs of women with GC. Using a telephone peer support model, the intervention package ensures equitable access to support services for geographically isolated patients. The novel intervention engages peer volunteers who liaise with nurses to encourage adherence to professionally-delivered information and provide emotional support. It has been designed to be potentially transferable to a range of treatment settings and diseases. Based on pilot data, the proposed intervention was found to be useful and acceptable to patients and clinicians. If effective and feasible in the multisite RCT, the program could be widely disseminated.
Trial registration
Australian New Zealand Clinical Trial Registry ACTRN12611000744954
doi:10.1186/1745-6215-14-39
PMCID: PMC3576284  PMID: 23399476
Peer support; Nurse; Intervention; RCT; Gynaecological cancer; Radiotherapy; Distress; Quality of life; Psychosexual function
16.  Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study 
Background:
Cerebral glioma has a devastating impact on cognitive, physical, social, psychological and spiritual well-being. We sought to understand the multidimensional experience of patients with this form of cancer as they progressed from receiving a diagnosis to the terminal phase of the disease.
Methods:
We recruited patients with a suspected brain tumour from a tertiary referral centre in the United Kingdom. We interviewed patients and their caregivers at key stages of the illness: before receiving a formal diagnosis, at the start of initial treatment, after initial treatment was completed and at six months’ follow-up; caregivers were also interviewed postbereavement. We interviewed the patients’ general practitioners once, after treatment had been completed. We transcribed the interviews and analyzed them thematically using the constant comparative method of a grounded theory approach.
Results:
We conducted in-depth interviews with 26 patients, 23 of their relatives and 19 general practitioners. We saw evidence of physical, social, psychological and existential distress even before a diagnosis was confirmed. Social decline followed a similar trajectory to that of physical decline, whereas psychological and existential distress were typically acute around diagnosis and again after initial treatment. Each patient’s individual course varied according to other factors including the availability of support and individual and family resources (e.g., personal resilience and emotional support).
Interpretation:
There are practical ways that clinicians can care for patients with glioma and their caregivers, starting from before a diagnosis is confirmed. Understanding the trajectories of physical, social, psychological and existential well-being for these patients allows health care professionals to predict their patients’ likely needs so they can provide appropriate support and sensitive and effective communication.
doi:10.1503/cmaj.111622
PMCID: PMC3328542  PMID: 22431898
17.  A Qualitative Analysis of Cancer-Related Fatigue in Ambulatory Oncology 
Clinical journal of oncology nursing  2012;16(1):10.1188/12.CJON.E26-E32.
The purpose of this study was to describe patients’ perceptions of the causes, relief, related symptoms, meaning, and suffering secondary to cancer-related fatigue (CRF). Two hundred and fifty two (n=252) patients with breast, lung, colon, and prostate cancers were enrolled in a quasi-experimental study to test the effects of a clinical intervention on reducing barriers to symptom management in ambulatory care. Analysis of data reported in this paper was derived from the Piper Fatigue Scale-Revised (PFS-R). Using qualitative research methods and content analysis, written statements related to the impact of CRF were coded using the following themes: patients’ perceptions of cancer related fatigue, the causes, relief, related symptoms, meaning, and suffering. Comments were categorized and reviewed for content.
Overall, CRF had a significant impact on the physical, psychological, social, and spiritual wellbeing. CRF limited the ability of participants to function, socialize, and participate in enjoyable activities. Emotional issues as a result of CRF were common. The negative impact of CRF on patient’s overall well-being alters the meaning and suffering related to the cancer experience. The assessment of personal meaning and suffering related to CRF is an important component of the multidimensional assessment of CRF. This will enable nurses to better understand the suffering related to CRF.
doi:10.1188/12.CJON.E26-E32
PMCID: PMC3822779  PMID: 22297018
18.  Task Shifting for Scale-up of HIV Care: Evaluation of Nurse-Centered Antiretroviral Treatment at Rural Health Centers in Rwanda 
PLoS Medicine  2009;6(10):e1000163.
Fabienne Shumbusho and colleagues evaluate a task-shifting model of nurse-centered antiretroviral treatment prescribing in rural primary health centers in Rwanda and find that nurses can effectively and safely prescribe ART when given adequate training, mentoring, and support.
Background
The shortage of human resources for health, and in particular physicians, is one of the major barriers to achieve universal access to HIV care and treatment. In September 2005, a pilot program of nurse-centered antiretroviral treatment (ART) prescription was launched in three rural primary health centers in Rwanda. We retrospectively evaluated the feasibility and effectiveness of this task-shifting model using descriptive data.
Methods and Findings
Medical records of 1,076 patients enrolled in HIV care and treatment services from September 2005 to March 2008 were reviewed to assess: (i) compliance with national guidelines for ART eligibility and prescription, and patient monitoring and (ii) key outcomes, such as retention, body weight, and CD4 cell count change at 6, 12, 18, and 24 mo after ART initiation. Of these, no ineligible patients were started on ART and only one patient received an inappropriate ART prescription. Of the 435 patients who initiated ART, the vast majority had adherence and side effects assessed at each clinic visit (89% and 84%, respectively). By March 2008, 390 (90%) patients were alive on ART, 29 (7%) had died, one (<1%) was lost to follow-up, and none had stopped treatment. Patient retention was about 92% by 12 mo and 91% by 24 mo. Depending on initial stage of disease, mean CD4 cell count increased between 97 and 128 cells/µl in the first 6 mo after treatment initiation and between 79 and 129 cells/µl from 6 to 24 mo of treatment. Mean weight increased significantly in the first 6 mo, between 1.8 and 4.3 kg, with no significant increases from 6 to 24 mo.
Conclusions
Patient outcomes in our pilot program compared favorably with other ART cohorts in sub-Saharan Africa and with those from a recent evaluation of the national ART program in Rwanda. These findings suggest that nurses can effectively and safely prescribe ART when given adequate training, mentoring, and support.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Infection with the human immunodeficiency virus (HIV) is a serious health problem in sub-Saharan Africa. The virus attacks white blood cells that protect against infection, most commonly a type of white blood cell called CD4. When a person has been infected with HIV for a long time, the number of CD4 cells they have goes down, resulting in acquired immune deficiency syndrome (AIDS), in which the person's immune system no longer functions effectively.
The World Health Organization (WHO) has divided the disease into four stages as it progresses, according to symptoms including weight loss and so-called opportunistic infections. These are known as clinical stage I, II, III, or IV but were revised and renamed 1, 2, 3, and 4 in September 2005. HIV infection and AIDS cannot be cured but they can be managed with antiretroviral treatment (ART). The WHO currently recommends that ART is begun when the CD4 count falls below 350.
Rwanda is a country situated in the central Africa with a population of around 9 million inhabitants; over 3% of the rural population and 7% of the urban population are infected with HIV. In 2007, the WHO estimated that 220,000 Rwandan children had lost one or both parents to AIDS.
Why Was This Study Done?
The WHO estimates that 9.7 million people with HIV in low- to middle-income countries need ART but at the end of 2007, only 30% of these, including in Rwanda, had access to treatment. In many low-income countries a major factor in this is a lack of doctors. Rwanda, for example, has one doctor per 50,000 inhabitants and one nurse per 3,900 inhabitants.
This situation has led the WHO to recommend “task shifting,” i.e., that the task of prescribing ART should be shifted from doctors to nurses so that more patients can be treated. This type of reorganization is well studied in high-income countries, but the researchers wanted to help develop a system for treating AIDS that would be effective and timely in a predominantly rural, low-income setting such as Rwanda.
What Did the Researchers Do and Find?
In conjunction with the Rwandan Ministry of Health, the researchers developed and piloted a task-shifting program, in which one nurse in each of three rural Rwandan primary health centers (PHCs) was trained to examine HIV patients and prescribe ART in simple cases. Nurses had to complete more than 50 consultations observed by the doctor before being permitted to consult patients independently. More complex cases were referred to a doctor. The authors developed standard checklists, instructions, and evaluation forms to guide nurses and the doctors who supervised them once a week.
The authors evaluated the pilot program by reviewing the records of 1,076 patients who enrolled on it between September 2005 and March 2008. They looked to see whether the nurses had followed guidelines and monitored the patients correctly. They also considered health outcomes for the patients, such as their death rate, their body weight, their CD4 cell count, and whether they maintained contact with caregivers.
They found that by March 2008, 451 patients had been eligible for ART. 435 received treatment and none of the patients were prescribed ART when they should not have been. Only one prescription did not follow national guidelines.
At every visit, nurses were supposed to assess whether patients were taking their drugs and to monitor side effects. They did this and maintained records correctly for the vast majority of the 435 patients who were prescribed ART. 390 patients (over 90%) of the 435 prescribed receiving ART continued to take it and maintain contact with the pilot PHC's program. 29 patients died. Only one was lost to follow up and the others transferred to another ART site. The majority gained weight in the first six months and their CD4 cell counts rose. Outcomes, including death rate, were similar to those treated on the (doctor-led) Rwandan national ART program and other sub-Saharan African national (doctor-led) programs.
What Do These Findings Mean?
The study suggests that nurses are able to prescribe ART safely and effectively in a rural sub-Saharan setting, given sufficient training, mentoring, and support. Nurse-led prescribing of ART could mean that timely, appropriate treatment reaches many more HIV patients. It would reduce the burden of HIV care for doctors, freeing their time for other duties, and the study is already being used by the Rwandan Ministry of Health as a basis for plans to adopt a task-shifting strategy for the national ART program.
The study does have some limitations. The pilot program was funded and designed as a health project to deliver ART in rural areas, rather than a research project to compare nurse-led and doctor-led ART programs. There was no group of equivalent patients treated by doctors rather than nurses for direct comparison, although the authors did compare outcomes with those achieved nationally for doctor-led ART. The most promising sites, nurses, and patients were selected for the pilot and careful monitoring may have been an additional motivation for the nurses and doctors taking part. Health professionals in a scaled-up program may not be as committed as those in the pilot, who were carefully monitored. In addition, the nature of the pilot, which lasted for under three years and recruited new patients throughout, meant that patients were followed up for relatively short periods.
The authors also warn that they did not consider in this study the changes task shifting will make to doctors' roles and the skills required of both doctors and nurses. They recommend that task shifting should be implemented as part of a wider investment in health systems, human resources, training, adapted medical records, tools, and protocols.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000163.
PLoS Medicine includes a page collecting together its recent articles on HIV infection and AIDS that includes research articles, perspectives, editorials, and policy forums
SciDev.net provides news, views, and information about science, technology, and the developing world, including a section specific to HIV/AIDs
The World Health Organization (WHO) has published a downloadable booklet Task Shifting to Tackle Health Worker Shortages
The WHO offers information on HIV and AIDS (in Arabic, Chinese, English, French, Russian, and Spanish) as well as health information and fact sheets on individual countries, including on Rwanda
The UNAIDS/WHO working group on HIV/AIDS and Sexually Transmitted Infections (STI) Surveillance gathers and publishes data on the prevalence of HIV and AIDS in individual countries, including on Rwanda
AIDS.ORG provides information to help prevent HIV infections and to improve the lives of those affected by HIV and AIDS. Factsheets on many aspects of HIV and AIDS are available. It is the official online publisher of AIDS Treatment News
doi:10.1371/journal.pmed.1000163
PMCID: PMC2752160  PMID: 19823569
19.  The Melbourne Family Support Program: evidence-based strategies that prepare family caregivers for supporting palliative care patients 
BMJ Supportive & Palliative Care  2013;4(3):231-237.
Background
A key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research.
Purpose
To provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers.
Methods
Developmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test.
Results
Four psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme.
Conclusions
The interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated.
doi:10.1136/bmjspcare-2013-000500
PMCID: PMC4145448  PMID: 24644195
Family caregivers; psychological; support; palliative; interventions
20.  Informal Caregiving in HCT Patients 
Purpose
Hematopoietic cell transplant patients are among the most vulnerable and acutely ill cancer populations (Bevans, Mitchell, & Marden, 2008). The responsibility of caring for the daily physical and psychosocial needs of these patients after transplant is placed mostly on family caregivers(Williams, 2007). The purpose of this descriptive correlational research study was to describe caregiving experiences of 56 caregivers of HCT patients 3–12 months following transplant.
Methods & Sample
Patients and caregivers were recruited from two west coast regional transplant programs in the United States. Variables studied were: relationship quality, rewards of caregiving, predictability, role strain, patient function, caregiving activities, and caregiver quality of life (QOL).
Key Results
Results indicated that all areas of role strain are significantly negatively correlated with caregiver's QOL. Predictability was negatively associated with problem solving and emotional strain indicating that as the level of predictability of the situation decreases, caregiver strain and problem solving increase. Predictability was positively correlated to caregiver QOL indicating that as the situation is more predictable caregiver QOL increases. Emotional strain, problem-solving strain, and usual care strain were significantly positively related, indicating that emotional strain and problem solving strain increased together. As usual care strain increased, so did problem-solving strain and emotional strain.
Conclusions
Suggestions for interventions include assessing and responding to caregiver issues such as emotional strain, problem-solving strain, usual care strain, unpredictability, and QOL. Examples of caregiver-focused interventions include providing timely appropriate information about these caregiver concerns including elements that make the caregiving situation predictable, and incorporating best practices for preventing and minimizing
doi:10.1016/j.ejon.2011.01.007
PMCID: PMC3112308  PMID: 21306952
HCT Transplant; Caregivers; Predictability; Role Strain; Quality of Life
21.  Deriving Meaning and Faith in Caregiving 
Seminars in oncology nursing  2012;28(4):256-261.
Objectives
To review assessment of spiritual needs of family caregivers and four core interventions by nurses in addressing spirituality: presence, deep listening, bearing witness and compassion in action.
Data Sources
Literature review.
Conclusion
Spirituality is increasingly recognized as a key domain of quality of life and essential to quality cancer care. In addition to the needs of patients, family caregivers also experience enormous spiritual needs throughout cancer diagnosis and treatment. Nurses can provide valuable spiritual assessment of family caregivers and support them as they seek support services to address spiritual needs.
Implications for Nursing Practice
Family caregiving can be a time of growth and meaning when support is provided by nurses and their colleagues.
doi:10.1016/j.soncn.2012.09.008
PMCID: PMC3666172  PMID: 23107183
Spiritual care; spirituality; family caregiver
22.  The relationship between spiritual intelligence with psychological well-being and purpose in life of nurses 
Background:
Spiritual intelligence is defined as the human capacity to ask questions about the ultimate meaning of life and the integrated relationship between us and the world in which we live. It results in an increase in psychological well-being of individuals as well as having a goal in their life. This study was conducted to investigate the relationship between spiritual intelligence with purpose in life and psychological well-being among the nurses.
Materials and Methods:
The study was a descriptive correlation study. In this study, 270 nurses were selected from some hospitals of Tehran University through convenient sampling. Data were collected through a four-section questionnaire including demographic characteristics, a 24-item questionnaire of spiritual intelligence and its four components, psychological well-being questionnaire with six subscales and 84 questions, and the questionnaire of purpose in life with 20 questions. The data obtained from the questionnaires were analyzed through SPSS software.
Results:
The results showed that there was a significant relationship between spiritual intelligence with psychological well-being and having a purpose in life. Furthermore, there was a significant association between the components of spiritual intelligence including conscious state expansion, personal meaning production, transcendental awareness, and critical existential thinking with psychological well-being.
Conclusion:
High level of spiritual intelligence in nurses helps them to improve their psychological well-being and have a purpose in life, which can lead to the health provision of them and their patients.
PMCID: PMC3748553  PMID: 23983726
Intelligence; Iran; nurses; psychological adaptation; quality of life; spirituality
23.  Psychological Distress, Social Withdrawal, and Coping Following Receipt of an Abnormal Mammogram Among Different Ethnicities: A Mediation Model 
Oncology nursing forum  2014;41(5):523-532.
Purpose/Objectives
To explore ethnic differences in psychological distress and social withdrawal after receiving an abnormal mammogram result and to assess if coping strategies mediate ethnic differences.
Design
Descriptive correlational.
Setting
Two urban mobile mammography units and a rural community hospital in the state of Washington.
Sample
41 Latina and 41 non-Latina Caucasian (NLC) women who had received an abnormal mammogram result.
Methods
Women completed standard sociodemographic questions, Impact of Event Scale–Revised, the social dimension of the Psychological Consequences Questionnaire, and the Brief COPE.
Main Research Variables
Ethnicity, psychological distress, social withdrawal, and coping.
Findings
Latinas experienced greater psychological distress and social withdrawal compared to NLC counterparts. Denial as a coping strategy mediated ethnic differences in psychological distress. Religious coping mediated ethnic differences in social withdrawal.
Conclusions
Larger population-based studies are necessary to understand how ethnic differences in coping strategies can influence psychological outcomes. This is an important finding that warrants additional study among women who are and are not diagnosed with breast cancer following an abnormal mammogram.
Implications for Nursing
Nurses may be able to work with Latina patients to diminish denial coping and consequent distress. Nurses may be particularly effective, given cultural values concerning strong interpersonal relationships and respect for authority figures.
doi:10.1188/14.ONF.523-532
PMCID: PMC4172284  PMID: 25158657
breast cancer; coping; cultural competence; Hispanic; prevention; detection; quality of life
24.  Sexual Morbidity Associated With Poorer Psychological Adjustment Among Gynecological Cancer Survivors 
Objectives
Sexual morbidity is a distressing and undertreated problem in gynecological cancer survivorship known to occur early and persist well beyond the period of physical recovery. Although often studied as a separate domain, sexuality represents an integral component of psychological adjustment and quality of life (QoL) that is adversely affected by cancer treatments. The present study tests the association between sexual morbidity, and adverse psychological adjustment and QoL outcomes.
Methods
A cross-sectional design was used. The participants were gynecological (cervical, endometrial, ovarian, and vulvar) cancer survivors who were partnered (N = 186), whose cancer was diagnosed 2 to 10 years previously, and who were at least 6 months post any cancer therapy. Most had been found to have early-stage disease (70%) and were treated with hysterectomy (77%), chemotherapy (43%), and/or radiotherapy (23%). Sexual morbidity was operationalized as a multidimensional construct including sexual behavior, sexual functioning, and subjective sexual satisfaction, assessed by patient self-report. Outcomes included self-reported depressive symptoms, traumatic stress symptoms, cancer-specific stress, stress about body changes, and QoL. Nurse-rated of performance status and disruptive signs/symptoms of treatment toxicity, as well as relevant sociodemographic and disease variables were collected as potential controls.
Results
Hierarchical multiple regression analyses tested sexual morbidity as a predictor of poor outcomes. All statistical models were significant, accounting for 12% to 53% of the variance in psychological adjustment/QoL. Sexual morbidity covaried with worsened depressive symptoms, body change stress, and psychological QoL beyond the negative contributions of (older) age, (poorer) performance status, and (greater) fatigue. Notably, disease and treatment variables were not statistically significant correlates of psychological adjustment or QoL.
Conclusions
These findings suggest that prevention or treatment of sexual morbidity might foster improved psychological adjustment/QoL. Given the high rates of sexual morbidity in this population and the connection between sexuality and broader psychological adjustment/QoL, there is a clear need for better integration of sexuality rehabilitation into routine clinical care.
doi:10.1111/IGC.0b013e3181d24ce0
PMCID: PMC3869624  PMID: 20375814
Sexual morbidity; Gynecological cancers; Survivorship; Quality of life; Psychological adjustment
25.  When expressions make impressions—Nurses’ narratives about meeting severely ill patients in home nursing care: A phenomenological-hermeneutic approach to understanding 
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.
doi:10.3402/qhw.v8i0.21880
PMCID: PMC3800125  PMID: 24138930
Nurse–patient interactions; emotional dimension; touch; home nursing care; palliative care; professional identity; phenomenological-hermeneutic approach

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