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.
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.
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.
Spiritual care; spirituality; family caregiver
Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.
caregiver; family caregiver; intervention; Alzheimer's disease; dementia; institutionalization; burden; psychological strain
Hematopoietic stem cell transplantation (HSCT) is used to eradicate disease and restore normal hematopoietic, immunologic, and/or metabolic functioning. HSCT is a complex treatment that is physiologically and psychologically demanding on the recipient, caregiver, and family. The purpose of this study was to identify needs and resources of family caregivers of pediatric HSCT recipients during the first year after transplant. Parental caregivers (n = 161) completed an online survey. The most cited sources of information were the HSCT team (87.7%), books and other print materials (83.1%), and the Internet (81.5%). However, more than half of the respondents reported that finding resources and services was a problem. More than half identified managing the emotional and social impact of the transplant on their child, posttransplant and follow-up care, practical strategies for caregiving, maintaining the family, and taking care of themselves during this first year as important topics to address. Adequately and regularly assessing caregiver and family needs and providing resources to meet those needs, especially during transitions in care, are important components of transplant care.
needs assessment; caregiving; bone marrow transplantation; adaptation; Internet; online survey
To date, there has been limited systematic research in the area of the emotional impact of cardiac transplantation. Since September 1984, a prospective study addressing this issue has been in progress at St. Vincent's Hospital, Sydney, Australia.
Initial results suggest that anxiety, associated with declining health and adjustment to the prospect of transplantation, was the major issue at pre-transplantation. Follow-up at the time of their first hospital discharge after transplantation and again at 3 months showed improvement in all psychological measures and did not identify any psychological morbidity.
Unlike professional caregivers such as physicians and nurses, informal caregivers, typically family members or friends, provide care to individuals with a variety of conditions including advanced age, dementia, and cancer. This experience is commonly perceived as a chronic stressor, and caregivers often experience negative psychological, behavioral, and physiological effects on their daily lives and health. In this report, we describe the experience of a 53-yearold woman who is the sole caregiver for her husband, who has acute myelogenous leukemia and was undergoing allogeneic hematopoietic stem cell transplantation. During his intense and unpredictable course, the caregiver's burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may experience negative health effects, mediated in part by immune and autonomic dysregulation. Physicians and their interdisciplinary teams are presented daily with individuals providing such care and have opportunity to intervene. This report describes a case that exemplifies caregiving burden and discusses the importance of identifying caregivers at risk of negative health outcomes and intervening to attenuate the stress associated with the caregiving experience.
Examining the interpersonal effects of suffering in the context of family caregiving is an important step to a broader understanding of how exposure to suffering affects humans. In this review article, we first describe existing evidence that being exposed to the suffering of a care recipient (conceptualized as psychological distress, physical symptoms, and existential/spiritual distress) directly influences caregivers’ emotional experiences. Drawing from past theory and research, we propose that caregivers experience similar, complementary, and/or defensive emotions in response to care recipient suffering through mechanisms such as cognitive empathy, mimicry, and conditioned learning, placing caregivers at risk for psychological and physical morbidity. We then describe how gender, relationship closeness, caregiving efficacy, and individual differences in emotion regulation moderate these processes. Finally, we provide directions for future research to deepen our understanding of interpersonal phenomena among older adults, and we discuss implications for clinical interventions to alleviate the suffering of both caregivers and care recipients.
Caregiving; Suffering; Emotion
For many hospice caregivers, the constancy and difficulty of caregiving impact their physical quality of life and cause depression, psychological distress, guilt, loneliness, and restrictions on social activities.
Deviating from traditional unidimensional research on hospice caregivers, this study explored the transactional nature of reciprocal suffering by examining caregiver concerns through four dimensions: physical, psychological, social, and spiritual.
Researchers analyzed audiotapes of intervention discussions between hospice caregivers and research social workers.
Results indicated that of the 125 pain talk utterances, the majority referenced psychological concern (49%), followed by physical (28%), social (22%), and spiritual (2%). Reflections on concerns revealed a global perspective of caregiving, which highlighted the patient’s needs juxtaposed to the caregiver’s recognized limitations.
By examining the reciprocal nature of suffering for caregivers, this study reinforced the need for assessing caregivers in hospice care, with specific emphasis on the importance of providing caregiver education on pain management.
Caregiver; pain management; hospice; suffering; caregiver burden; caregiver quality of life
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.
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.
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.
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.
Informal caregivers of hospice patients experience multiple stressors that can negatively impact physical, psychological, and emotional health. The goal of this qualitative study was to understand caregivers' needs to inform the feasibility, structure, and content of a telephone-based counseling intervention.
Focus groups and interviews with 36 former hospice caregivers and 11 hospice staff from 6 hospices were conducted. Interviews and focus groups were audio-recorded, transcribed, and analyzed using a constant comparative approach.
Key content areas included coping, emotional support, self-care, logistical issues, and bereavement. Respondents supported telephone-based counseling, appreciating its relative anonymity and convenience. It was recommended that calls be initiated by the counselor, on a weekly basis, and that one counselor be assigned to each caregiver. Hospice staff emphasized the need to coordinate telephone counseling with hospice care, scheduling around and communicating with hospice staff. Most caregivers indicated that they would participate in telephone-based counseling were it available; hospice staff thought that half of caregivers would participate. A pervasive theme was that “there can never be enough support for a caregiver.”
Informal caregivers of hospice patients have support needs that are amenable to telephone-based counseling designed to be complementary to existing hospice services. Based on these qualitative findings, we are pilot-testing a telephone-based cognitive-behavioral stress management program for informal caregivers of hospice patients.
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.
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.
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.
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.
Schizophrenia is a severe mental illness which is associated with significant consequences for both the patients and their relatives. Due to chronicity of the illness, the relatives of patients of schizophrenia have to bear the main brunt of the illness. Studies across the world have evaluated various aspects of caregiving and caregivers such as burden, coping, quality of life, social support, expressed emotions, and psychological morbidity. In general the research has looked at caregiving as a negative phenomenon, however, now it is increasingly recognised that caregiving is not only associated with negative consequences only, also experience subjective gains and satisfaction. This review focus on the conceptual issues, instruments available to assess the positive aspects of caregiving and the various correlates of positive aspects of caregiving reported in relation to schizophrenia. The positive aspect of caregiving has been variously measured as positive caregiving experience, caregiving satisfaction, caregiving gains and finding meaning through caregiving scale and positive aspects of caregiving experience. Studies suggests that caregivers of patients with schizophrenia and psychotic disorders experience caregiving gains (in the form of becoming more sensitive to persons with disabilities, clarity about their priorities in life and a greater sense of inner strength), experience good aspects of relationship with the patient, do have personal positive experiences. Some of the studies suggest that those who experience greater negative caregiving experience also do experience positive caregiving experience.
Schizophrenia; Caregiving; Positive aspects
Hospital nurses frequently experience relationships with patients as stressors in the workplace. Nurses’ coping behavior is one potential buffering factor that can reduce the effects of job stress on their psychological functioning and well-being. In this study, the association between nurses’ strategies for coping with interpersonal stress from patients and their psychological distress was examined. Participants included 204 hospital nurses and 142 salespeople, who were used as a comparison group. Participants completed measures of coping with interpersonal stress and psychological distress. Hospital nurses reported more psychological distress than did salespeople. Moreover, distancing coping was correlated with high psychological distress in both nurses and salespeople, and reassessing coping was correlated with low psychological distress in nurses. For nurses only, constructive coping appeared to be an effective strategy for reducing psychological distress. It is important for nurses to understand the role of constructive coping in nurse–patient communication and interaction.
nurse; relationships with patients; interpersonal stress; coping behavior; job stress
Women in particular suffer from psychological stress when diagnosed with infertility.
Psychosocial interventions are known to not only prevent and lessen various mental problems,
but also to play a positive role in physical health and pregnancy rates. The aim of this study is
to determine the unique impact of spiritual psychotherapy on concerns about infertility and their
perceived psychological stresses.
Materials and Methods:
This study was a randomized clinical trial. The study population included
nearly 800 infertile couples who attended the Maternity and Gynecology Clinic of Jahrom University
of Medical Sciences, Jahrom, Iran. We enrolled65 people who were randomly divided into two
groups, experimental (n=33)and control (n=32). The experimental group received spiritual group
psychotherapy counseling for 12 sessions, 2 hours per week for a 3 months period. The control
group did not receive any intervention, but due to ethical considerations, we gave a presentation (one
session) about infertility treatment for this group after the research process was completed. We used
two questionnaires to obtain data, the Penn State Worry Questionnaire (PSWQ) and Perceived Stress
Scale (PSS). Data analysis was done by descriptive and analytic statistics using SPSS 16 software.
Psychological intervention in the treatment group significantly decreased the PSWQ
(p=0.004). There were significant differences in the mean score of the PSWQ in both groups as
determined by analysis of covariance (ANCOVA; p=0.009). Psychological intervention in the
treatment group decreased the level of perceived stress, when compared with the control group.
According to ANCOVA there were significant differences between the mean PSS scores of both
Logotherapy is related to stress reduction and can decrease psychiatric symptoms
of worry and perceived stress. This approach tends to improve an infertile person's ability to
deal with their problem of finding the meaning of life. Thus it can be concluded that logotherapy
along with other treatment methods, is a useful approach for infertile couples (Registration
Spiritual Therapies; Psychological Distress; Mental Health; Infertility
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.
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.
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.
Australian New Zealand Clinical Trial Registry ACTRN12611000744954
Peer support; Nurse; Intervention; RCT; Gynaecological cancer; Radiotherapy; Distress; Quality of life; Psychosexual function
Given the longevity achievable with current prophylactic and therapeutic strategies for persons with HIV infection, quality of life (QOL) has emerged as a significant medical outcome measure, and its enhancement has an important goal. This review highlights the relevance and complexity of physical, psychological, and social factors as determinants of health-related quality of life in HIV-infected persons. Existing data suggest that physical manifestations, antiretroviral therapy, psychological well-being, social support systems, coping strategies, spiritual well-being, and psychiatric comorbidities are important predictors of QOL in this population. Consequently, the impact of HIV infection on the dimensions of QOL, including physical and emotional well-being, social support systems, and life roles, has emerged as a key issue for persons infected with HIV.
AIDS; antiretroviral therapy; anxiety; coping; depression; HIV; psychosocial; quality of life; social support
The purpose of this study was to evaluate the effectiveness of a group intervention approach aimed at improving the mental health of psychiatric nurses exposed to violent speech/violence. Sixty-two nurses having experienced serious episodes of violent speech/violence were enrolled in this study. A group intervention approach was used in the intervention group. For both the intervention and the control groups, evaluations were conducted at three time points. Evaluations were conducted using the Impact of Event Scale-Revised (IES-R) and Profile of Mood States (POMS). The results showed that changes in the flashback, hyper-arousal, avoidance behavior, and total scores on the IES-R and anxiety and depression scores on the POMS differed significantly between the two groups. These results suggest that a group intervention approach can lessen the psychological burden of nurses exposed to violence and reduce their mental stress.
Spousal caregivers of Alzheimer’s Disease patients are at increased risk for cardiovascular disease, possibly via sympathetic response to stressors and subsequent catecholamine surge. Personal mastery (i.e., belief that one can manage life’s obstacles) may decrease psychological and physiological response to stressors. This study examines the relationship between mastery and sympathetic arousal in elderly caregivers, as measured by norepinephrine reactivity to an acute psychological stressor.
Following assessment for mastery and objective caregiving stressors, caregivers underwent an experimental speech task designed to induce sympathetic arousal.
Data was collected by a research nurse in each caregiver’s home.
Sixty-nine elderly spousal Alzheimer caregivers (mean age = 72.8 years) who were not taking β-blocking medication.
Participants delivered a brief speech in response to vignettes depicting stressful situations.
Mastery was assessed using Pearlin’s Personal Mastery scale and Alzheimer patient functioning was assessed using the Clinical Dementia Rating Scale, Problem Behaviors Scale, and Activities of Daily Living Scale. Plasma norepinephrine assays were conducted using pre- and post-speech blood draws.
Multiple regression analyses revealed that mastery was significantly and negatively associated with norepinephrine reactivity (B = −9.86, t(61) = −2.03, p = .046) independent of factors theoretically and empirically linked to norepinephrine reactivity.
Caregivers with higher mastery had less norepinephrine reactivity to the stressor task. Mastery may exert a protective influence that mitigates the physiological effects of acute stress, and may be an important target for psychosocial interventions in order to reduce sympathetic arousal and cardiovascular stress among dementia caregivers.
Dementia; Caregiving; Sympathetic Arousal; Mastery; Stress; Coping
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.
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.
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.
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).
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.
Cancer; Oncology; Distress Thermometer; Distress screening; Validity; Accuracy
Bariatric surgery is currently the most effective form of obesity management for those whose BMI is greater than 40 (or 35 with co morbidities). A minority of patients, however, either do not show the desired loss of excess weight or show weight regain by follow up. Research highlights some of the reasons for this variability, most of which centres on the absence of any psychological support with patients describing how although surgery fixes their body, psychological issues relating to dietary control, self esteem, coping and emotional eating remain neglected.
The present study aims to evaluate the impact of a health psychology led bariatric rehabilitation service (BRS) on patient health outcomes. The bariatric rehabilitation service will provide information, support and mentoring pre and post surgery and will address psychological issues such as dietary control, self esteem, coping and emotional eating. The package reflects the rehabilitation services now common place for patients post heart attack and stroke which have been shown to improve patient health outcomes.
The study is a randomised control trial and patients will be allocated to receive either usual care or the bariatric rehabilitation service pre and post bariatric surgery. Follow up measures of weight loss and psychological issues will be taken at baseline (2 weeks preoperatively), 3, 6 and 12 months postoperatively. The contents of the bariatric service and the follow up measures are based on previous pilot work and have been developed further by the research team working closely with two patient support groups (BOSPA & WLSinfo). This study will take place in St Richard's Hospital in Chichester in the UK.
It is predicted that a bariatric rehabilitation service will improve weight loss following surgery and will also facilitate changes in other psychological variables such as quality of life, dietary control, self esteem, coping and emotional eating. This also has cost implications for the NHS and other healthcare providers as improved effectiveness of bariatric surgery reduces the health costs of obese patients in the longer term.
Obesity; Surgery; Bariatric; Quality of life; Coping
By adding new levels of experience, mobile Augmented Reality (mAR) can significantly increase the attractiveness of mobile learning applications in medical education.
To compare the impact of the heightened realism of a self-developed mAR blended learning environment (mARble) on learners to textbook material, especially for ethically sensitive subjects such as forensic medicine, while taking into account basic psychological aspects (usability and higher level of emotional involvement) as well as learning outcomes (increased learning efficiency).
A prestudy was conducted based on a convenience sample of 10 third-year medical students. The initial emotional status was captured using the “Profile of Mood States” questionnaire (POMS, German variation); previous knowledge about forensic medicine was determined using a 10-item single-choice (SC) test. During the 30-minute learning period, the students were randomized into two groups: the first group consisted of pairs of students, each equipped with one iPhone with a preinstalled copy of mARble, while the second group was provided with textbook material. Subsequently, both groups were asked to once again complete the POMS questionnaire and SC test to measure changes in emotional state and knowledge gain. Usability as well as pragmatic and hedonic qualities of the learning material was captured using AttrakDiff2 questionnaires. Data evaluation was conducted anonymously. Descriptive statistics for the score in total and the subgroups were calculated before and after the intervention. The scores of both groups were tested against each other using paired and unpaired signed-rank tests. An item analysis was performed for the SC test to objectify difficulty and selectivity.
Statistically significant, the mARble group (6/10) showed greater knowledge gain than the control group (4/10) (Wilcoxon z=2.232, P=.03). The item analysis of the SC test showed a difficulty of P=0.768 (s=0.09) and a selectivity of RPB=0.2. For mARble, fatigue (z=2.214, P=.03) and numbness (z=2.07, P=.04) decreased with statistical significance when comparing pre- and post-tests. Vigor rose slightly, while irritability did not increase significantly. Changes in the control group were insignificant. Regarding hedonic quality (identification, stimulation, attractiveness), there were significant differences between mARble (mean 1.179, CI −0.440 to 0.440) and the book chapter (mean −0.982, CI −0.959 to 0.959); the pragmatic quality mean only differed slightly.
The mARble group performed considerably better regarding learning efficiency; there are hints for activating components of the mAR concept that may serve to fascinate the participants and possibly boost interest in the topic for the remainder of the class. While the small sample size reduces our study’s conclusiveness, its design seems appropriate for determining the effects of interactive eLearning material with respect to emotions, learning efficiency, and hedonic and pragmatic qualities using a larger group.
German Clinical Trial Register (DRKS), DRKS-ID: DRKS00004685; https://drks-neu.uniklinik-freiburg.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00004685.
problem-based learning; cellular phone; education; medical; emotions
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).
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.
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
HCT Transplant; Caregivers; Predictability; Role Strain; Quality of Life
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.
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.
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)
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.
Ambient assistive living; Dementia assistance; Real life deployment; Dynamic and adaptable systems; Context aware services
Few studies have focused on caring professionals and their emotional exhaustion from working with traumatized clients, referred to as compassion fatigue (CF). The present study had 2 goals: (a) to assess the psychometric properties of a CF scale, and (b) to examine the scale's predictive validity in a multivariate model. The data came from a survey of social workers living in New York City following the September 11, 2001, terrorist attacks on the World Trade Center. Factor analyses indicated that the CF scale measured multiple dimensions. After overlapping items were eliminated, the scale measured 2 key underlying dimensions—secondary trauma and job burnout. In a multivariate model, these dimensions were related to psychological distress, even after other risk factors were controlled. The authors discuss the results in light of increasing the ability of professional caregivers to meet the emotional needs of their clients within a stressful environment without experiencing CF.
compassion fatigue; secondary trauma; occupational stress
A substantial proportion of noncommunicable disease originates in habitual overconsumption of calories, which can lead to weight gain and obesity and attendant comorbidities. At the other end of the spectrum, the consequences of undernutrition in early life and at different stages of adult life can also have major impact on wellbeing and quality of life. To help address some of these issues, greater understanding is required of interactions with food and contemporary diets throughout the life course and at a number of different levels: physiological, metabolic, psychological, and emotional. Here we review the current literature on the effects of dietary manipulation on anxiety-like behaviour. This evidence, assembled from study of preclinical models of diet challenge from gestation to adult life, supports a role for diet in the important connections between psychology, physiology, and behaviour. Analogous processes in the human population in our current obesogenic environment are likely to contribute to individual and societal challenges in this area.