Care Tasks Research Articles

Effectiveness of care provided by an itinerant community caregiver in reducing the burden and violence of family caregivers of impaired elderly in Rio de Janeiro, Brazil: A randomized clinical trial.

The aging population and the rise in chronic diseases are linked to a higher number of elderly individuals with impairments. These individuals often depend on family caregivers for basic daily activities, which can impose a significant burden and increase the risk of violence against them. To assess the effectiveness of itinerant community caregivers (ICC) in reducing burden, depression and risk of violence among family caregivers of impaired elderly (FCIE), while also increasing their social support. Randomized controlled trial with 38 pairs of elderly people and their caregivers. For six months, twice a week, the ICC spent three hours with the elderly, completing tasks given by the FCIE. The primary outcomes were reduction of at least one level in the burden, and or in the risk of violence against the elderly. The secondary outcomes were a decrease in depressive symptoms and/or an increase in social support. Multiple log binomial regression models were used to assess the relationship between the predictors and the response variables. In the FCIE group, most individuals providing care were women who spent over 16 hours each day in the task of caring for the impaired elderly, with most falling between the ages of 41 and 60. Over half of them were children of the elderly participants. In the intervention group, there was a significant decrease in the likelihood of violence against the elderly, with a 10-fold reduction. However, other endpoints did not present significant changes. The involvement of an ICC in the care of impaired elderly can contribute to reducing domestic violence by FCIE.

Perceptions of Bedside Nurses Caring for Patients with Left Ventricular Assist Devices (LVAD): A Qualitative Study.

Bedside nurses in the intensive care units are exposed to multiple challenges in their regular practice and recently have taken in ventricular assist device care in Lebanon since its introduction as a fairly new practice. To explore the experiences of nursing staff who work in Lebanese hospitals with Left Ventricular Assist Devices (LVAD). This study employed a qualitative phenomenological research design, where semi-structured interviews were carried out among fifteen LVAD nurses in an acute care hospital. The qualitative data analysis produced six main themes. The first theme prevalent was "LVAD incompetence and shortage" and it reflected the deficit in properly structured training and the number of specialized LVAD nurses. The second theme that resulted from the analysis was titled, "Patient and family knowledge", which indicated the misconceptions that families and patients usually hold about LVAD which usually sugarcoats the situation. This was followed by "Burden of complications", "LVAD patient selection", "Perception of the LVAD team as invulnerable", and "High workload and patient frailty" which reflected the perspectives of LVAD nurses. This study shows that the Lebanese LVAD nurses who participated in this study perceived inadequate competence, yet lacked proper training and induction. The nurses reported multiple challenges relating to care tasks, workload, and patient and family interactions which need to be addressed by coordinators.

Direct and Indirect Care of Patients With Multiple Sclerosis: Burden on Providers and Impact of Portal Messages.

Multiple sclerosis (MS) indirect patient-care time is often underreported and uncompensated. Data on time spent on indirect and direct care by MS providers is lacking. A survey was designed to understand the practice patterns among MS providers in the United States, including time spent on direct and indirect patient care, as well as managing electronic medical record portal messages. The National MS Society and the American Academy of Neurology facilitated the distribution of the survey to MS providers. Most providers spent at least 1 hour on new and at least 30 minutes on follow-up direct patient care. For indirect patient care, 77% of providers spent more than 1 hour and 57% spent more than 2 hours per day. While some providers have support staff to help with portal messages, many do not have protected time or compensation for portal messages. Multiple sclerosis providers spent a higher-than-average time on direct and indirect patient care tasks, including portal messages, and most lack protected time or compensation for portal messages. These results highlight the potential impact of indirect patient care (notably portal messages) on provider workload and burnout. Better support, protected time and/or compensation for indirect patient care can help ease physician burden and decrease burnout.

"I Like the Feeling of Connecting With People": A Mixed-Methods Study of Nursing Assistants Experiences Across the Care Continuum.

Nursing assistants (NAs) are critical professionals across the long-term care continuum. Despite the demands of NAs, these frontline personnel experience workplace challenges and turnover at a disproportionate rate compared to other professionals. Much research has explored the experiences of nursing assistants using federal survey data and national datasets. Guided by a socio-ecological model and the job-demands resource model, this study utilized a sequential mixed-methods approach to uncover a more nuanced understanding of NA workplace experience. Results from this combined qualitative (N = 17) and quantitative (N = 354) study found that there are several workplace aspects, such as organizational culture and supervisor relationships, that contribute to NA experiences across system levels. Further exploration of direct care tasks directly from nursing assistants is necessary to understand full intentions.

Pediatric resident use, perceptions, and desires for improvement of a clinical secure messaging application

BackgroundHospitals are transitioning away from traditional pagers to secure text messaging (STM) applications. STM is perceived to improve efficiency and accessibility. There is limited research on user's impressions of how STM impacts patient safety, provider wellness, and quality of patient care. ObjectivesTo understand the use and perceptions of a clinical STM by pediatric residents at a free-standing quaternary care children's hospital. MethodsA survey was conducted of pediatric residents regarding their experience with Diagnotes®. Demographic data were obtained along with use patterns, ability to perform tasks, and perceptions of intended purpose. Further questions evaluated agreement with communication strategies and satisfaction with features. Three open-ended questions asked about experience where STM impacted (1) patient care coordination and (2) patient safety. A final question asked for any additional STM feedback. ResultsOf 169 surveys, there were 112 respondents (66.3 % response rate). Respondents unanimously endorsed daily STM use on their personal mobile devices with good knowledge of basic features. Respondents were overall satisfied with Diagnotes® (73.9 %) including the ability to communicate efficiently (84.8 %) and effectively (79.5 %). Yet only 32.1 % were satisfied with Diagnotes® training. Only 59.5 % believed Diagnotes® was appropriate for urgent patient care needs and only 43.2 % believed its purpose was to inform the team of patient emergencies. Key qualitative themes included improved coordination of patient care tasks through STM, but there were concerns raised around sending and receiving messages, the additional cognitive burden placed by STM, and differences in culture of use that created conflict. ConclusionsDiagnotes® is viewed positively including use for effective coordination of patient care and familiarity of functions of Diagnotes®. Barriers included unclear interprofessional expectations for use. Future research should incorporate a broad range of healthcare professionals' perceptions and co-creation of STM best practice guidelines for use, including around urgent or emergent patient care issues.

Communication in Medical Teams: a Literature Review

Teamwork based on proper communication, social skills of interdisciplinary team members and proper division of roles has a direct impact on the quality of patient care. Incorrect interpretation of messages or delayed reaction to the received message cause significant problems in a teamwork. Nurses and doctors are two of the most important healthcare providers. They perform separate but complementary tasks in health care. An electronic literature search was conducted in the PubMed and ScienceDirect databases with the aim of analysing research on cooperation in healthcare teams, with a particular focus on the aspect of mutual communication between doctors and nurses. Empirical evidence may indicate that formal practices that strengthen communication and relationships among providers through participation in joint training have the potential to increase physicians’ awareness of teamwork and thereby support effective team behaviours. Of the studies reviewed, some were conducted using unvalidated survey instruments. Some examined the opinions of only one professional group, without comparing them with the opinions of other groups involved in the collaborative process. Consequently, the present findings are inadequate as a reliable foundation for scientific conclusions.

Introducing a conceptual framework for reflective team dialogue to foster interdisciplinary collaboration in community health centers in Flanders & Brussels

Short intro: By facilitating a reflective team dialogue on key elements of interdisciplinary care, the framework “Complementary Care” supports primary care teams in shifting from multidisciplinary to interdisciplinary collaboration.
 Abstract: The Association of Community Health Centers (CHC) overarches a diverse set of 37 interdisciplinary primary care practices in Flanders and Brussels. The centers are funded via a needs based capitation model. Although team collaboration is facilitated by practical and financial factors, there was a need for strengthening interdisciplinary collaboration. 
 A reflective framework was developed by an interdisciplinary group of primary care professionals. It was described that the CHCs wanted to evolve from task shifting towards task sharing. In task shifting, care tasks are delegated from one team member to another team member. Task sharing however is a the uptake of integrated care by the whole team in shared responsibility and based on a shared vision of care, via the acknowledgment, recognition and optimal usage of the qualities in the interdisciplinary team. A participative trajectory, including 47 primary care professionals from 11 different disciplines, led to the identification of six essential buildings stones to work towards task sharing: (1) the acknowledgment of other team members in their expert role, (2) the composition of the team, (3) self care, (4) shared ownership, (5) speaking a common language and (6) a sense of equality within the team. The developed framework has been tested as a discussion tool in 5 interprofessional teams. Preliminary evaluation shows that it has led to the implementation of quick wins and more profound transitions towards integrated care. A further dissemination of the framework is planned trough in-site visits of CHCs. 
 

How do I roll out a digital collaboration tool?

In 2023, the Flemish government will start developing a digital care and support plan. With this shared support plan, we want care providers, informal caregivers and citizens to collaborate digitally in a goal-oriented care plan. 
 The digital care and support plan is being built by an external IT partner in co-creation with stakeholders and citizens. In a first test version, 5 modules are offered: 
 * Communication 
 * Life goals 
 * Care and support goals 
 * Care and support tasks 
 * Care team 
 After a test phase at the end of 2023 this digital collaboration tool will be rolled out across Flanders in two pilot projects. 
 The rollout will be planned on 3 axes (possibly in parallel): 
 * geographical extension: step by step connecting a number of new zones
 * multidisciplinary expansion: integrate new sectors step by step 
 * substantive expansion: develop additional modules 
 In this workshop we will bring policy makers and network organizations from different regions together to share best practices. 
 * What good practices are available? 
 * What is needed to successfully address the 3 axes? 
 * What are the pros and cons of expanding on any of the 3 axes? 
 * What is the impact of each extension on the success of the full rollout? 
 * What is the impact on support and adoption in the field? 
 This session primarily aims to share experiences and bring together knowledge. 
 
 
 The workshop will be composed of: 
 * 15 minutes introduction and context 
 * 3 x 10 minutes working around 3 different axes and their impact (sharing experiences and good practices). Naming pros and cons of each axis. 
 * 15 minutes: Distill best approach per group - what order, possibly parallel rollout is preferable? 
 * 15 minutes: combine results into a global best practice

Integrating oral health assessment in the care for older people by means of the interRAI oral health section: an implementation and evaluation study. 

Background: Oral health of care-dependent older people is generally poor which can affect their general health and well-being. In nursing homes, caregivers such as nurses and nurse aids are important actors for delivering oral care and detecting oral health problems. Performing regular oral health assessments is a key element to improve oral health in older people. The interRAI instrument used in the long-term care facilities (LTCF) includes an oral health section (OHS) and holds the potential to integrate oral care in the general care planning. Since the standard OHS fails to adequately detect oral health problems, an optimized section was developed. The study evaluates the optimized OHS of the interRAI suite of instruments in order to integrate oral health assessment in the daily practice. 
 Setting and participants: Care-dependent older people living in 11 nursing homes in Flanders, Belgium, who are 65 years or older. Their professional caregivers are also included in the study.
 Methods: This 2-year longitudinal cluster randomized controlled trial is set up in three parallel groups (2 test groups and 1 control group) to evaluate the effectiveness and the usability of the optimized and validated OHS for use in the interRAI-LTCF. In the intervention groups T1 and T2, trained caregivers use the interRAI-LTCF with the optimized OHS. Additionally, caregivers in T2 receive support to use new guidelines for oral care. In the control group, caregivers assess oral health using the standard OHS. The study has a longitudinal design with a mixed methods approach.
 The data collected about oral health and general health will be coupled with a national registry database on dental care consumption to analyze the outcome of the OHS regarding dental referral and actual dental care utilization. At the caregiver level, changes in knowledge and attitude regarding oral health will be evaluated using questionnaires. Interviews with older people and focus group discussions with caregivers will help to understand the usability of the optimized OHS and associated training.
 Results: The quantitative results will show whether the use of the optimized OHS enables improved oral health in care-dependent older people in residential care and improves the knowledge, attitude and perception of caregivers towards oral health and oral care. The qualitative data will show how older people and their caregivers experience the use of this OHS and to what extent daily and professional oral health care changes for the older people, being more intensively integrated in general care planning.
 Discussion: In residential care settings, prioritizing care tasks often brings neglect regarding oral care for care-dependent older people. Professional dental care is also difficult to deliver, due to mobility or lack of resources. This study evaluates whether regular oral health assessments performed by caregivers in residential care improve oral health in older people and to what extent these oral health assessments lead to better integration of oral care in general care. The results will shed light on the ongoing situation and will provide evidence to support the use of the optimized OHS and accompanying oral care guidelines in daily practice.

Evaluation of the effectiveness of complex medical rehabilitation of patients with polyposis rhinosinusitis associated with atopic dermatitis using ICF

BACKGROUND: In medical rehabilitation of patients with polyposis rhinosinusitis, aimed at solving the urgent strategic task of public health care to achieve and maintain an optimal level of functioning of persons suffering from partial disability through the development of effective methods of restoration of impaired functions and prevention of complications, there is a need to adequately assess the effectiveness of the measures taken. In this regard, it should be noted that the International Classification of Functioning, Disability and Health (ICF) serves as the gold standard for assessing the patient's quality of life and the effectiveness of rehabilitation measures. The category of human functioning acts as a system-forming basis and starting point of the patient's rehabilitation process in the ICF. In practice, the ICF is based on the biopsychosocial model of health (disease) assessment, which considers psychological and social factors of health (disease) and biological disorders in close interrelated unity. AIM: To evaluate the effectiveness of complex medical rehabilitation of patients with polyposis rhinosinusitis associated with atopic dermatitis using dynamic changes in the main domains of the ICF. MATERIALS AND METHODS: The study was performed with 89 patients with polyposis rhinosinusitis associated with atopic dermatitis. All patients were divided into 4 groups by simple fixed randomisation. The first group (control, n=22) received only basic therapy, including endonasal application of nasonex 2 doses 2 times a day, daily twice daily washing of the nasal mucosa, as well as the use of desensitising (antihistamines, topical glucocorticoids and moisturising and emollient agents) and detoxifying agents. Patients in the second group (comparison group 1, n=22) were additionally subcutaneously administered dupilumab at a dose of 300 mcg once a fortnight. In the third group (comparison group 2, n=23) against the background of dupilumab administration the combined effect of alternating magnetic field and low-intensity laser radiation of red spectrum was performed. Patients of the fourth group (the main group, n=22) received a course of phototherapy in addition to the scope of treatment of patients of the third group. The results of medical rehabilitation of patients with polyposis rhinosinusitis associated with atopic dermatitis were evaluated according to the dynamics of specialised categories of ICF, which most accurately characterise the patient's condition from the perspective of the biopsychosocial model of the disease. RESULTS: Changes in the estimated parameters of ICF at comparable initial values had different character and were determined by the scheme of medical rehabilitation. Minimal changes were recorded in the control group. The use of dupilumab was accompanied by positive dynamics of the parameters after 1 month with a significant increase in the shifts after 6 months, indicating the recovery of a number of mental and physical functions, as well as the ICF categories characterising the organism structures, activity and participation of the patient. Supplementation of biological therapy with course magnetolaser influence was accompanied by an increase in positive changes, which were confirmed in 6 months after rehabilitation. The maximum dynamics of the considered ICF categories was noted in the 4th group, where dupilumab administration was supplemented with complex use of therapeutic physical factors. CONCLUSION: The obtained results prove the high informativeness of the system approach realised with the help of ICF in assessing the effectiveness of medical rehabilitation measures. The comparative evaluation of rehabilitation results convincingly showed the advantages of the complex programme including dupilumab target therapy in combination with physiotherapeutic effects.

ENDOTHELIAL GLYCOCALYX DAMAGE IN PATIENTS WITH SEVERE FUNCTIONAL INJURY

In modern medical science, endothelial glycocalyx, which is considered a target organ in many diseases, including severe traumatic injuries, is becoming one of the main objects of researchers' attention [1,2]. Trauma is the leading cause of death and disability worldwide, and despite the introduction of damage-controlled resuscitation, mortality remains very high. More than half of trauma patients are found to have laboratory-defined coagulopathy on admission, which further leads to increased mortality [3,4]. Laboratory-defined coagulopathy, also called trauma-induced coagulopathy, is described as either excessive activation of the protein C pathway accompanied by hyperfibrinolysis or as a manifestation of the hemorrhagic phenotype of disseminated intravascular coagulation. Common to both of these explanations is that, they are based on the measurement of concentrations of pro- and anticoagulant clotting factors, platelet counts, and fibrin degradation products [5,6]. Nowadays, evidence is accumulating for a key role of the glycocalyx as one of the first structures involved in the trauma-induced coagulopathic response and it may be one of the earliest signs of progression in the severity of patients. In our study of trauma patients using whole blood thrombelastography (TEG), we found that the hemostatic profile became increasingly hypocoagulative and hyperfibrinolytic with increasing severity of injury, Therefore, studies of the significance of glycocalyx in the development of severe complications in conditions of persistently high lethality in trauma patients [7,8], are a priority and primary task of science and practical health care. Glycocalyx is a birth of a new clinical paradigm, but the full understanding of its significance and functions is still far away and researchers are only at the beginning of the way. We study the role of the endothelial glycocalyx system and analyze the relationship between markers of glycocalyx degradation and the severity of the clinical course of the disease in severe traumatic injuries. It is expected that a deeper study of the glycocalyx, understanding the relationship between the mechanisms of its degradation and trauma is extremely important and will lead to the development of new scientific strategies for early diagnosis and the possibility of predicting disease outcomes in patients with severe traumatic injuries. The object of our scientific research were patients with severe combined trauma. The study was carried out taking into account the principles of evidence-based medicine. The obtained data were processed using standard methods of statistical analysis.

Experiences of patients with peritoneal carcinomatosis-related complex care needs and their caregivers

BackgroundPatients with peritoneal carcinomatosis (PC) frequently undergo palliative procedures, yet these patients and their caregivers report being unprepared to manage ostomies, drains, and other complex care needs at home. The purpose of this study was to characterize the unique needs of these patients and their caregivers during care transitions. MethodsPatients completed measures of health status and advance care planning, caregivers completed measures of preparedness and burden, and all participants completed measures of depression and anxiety. Participants detailed their experiences in individual, semi-structured interviews. We analyzed data using descriptive statistics and conventional content analysis. ResultsSixty-one patients and 39 caregivers completed baseline measures. Twenty-four (39.3%) patients acknowledged their terminal illness and seven (11.5%) had discussed end-of-life care preferences with clinicians. Most (26/39, 66.7%) caregivers provided daily care. Among caregivers who managed symptoms, few were taught how to do so (6/20, 30%). Seven patients (11.5%) and seven caregivers (17.9%) met case criteria for anxiety, while 15 patients (24.6%) and two caregivers (5.1%) met case criteria for depression. Interview participants described a diagnosis of PC as a turning point for which there is no road map and identified the need for health systems change to minimize suffering. ConclusionPatients with PC and their caregivers are highly burdened by symptoms and care needs. Patients' prognostic understanding and advance care planning are suboptimal. Interventions that train patients with PC and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed.

CAREGIVER INVOLVEMENT AND CONCERNS WITH RESIDENT CARE IN ASSISTED LIVING BEFORE AND DURING COVID-19

Abstract Family/friend caregivers are essential in promoting assisted living (AL) residents’ health/well-being, but their involvement was restricted during the COVID-19 pandemic. Care needs in AL are similarly complex as in nursing homes, but fewer staffing resources and services are available. Caregiver involvement and concerns with care of AL residents before and during the COVID-19 pandemic is a critical knowledge gap. This prospective cohort study collected online surveys from caregivers to AL residents in Western Canada. Surveys assessed socio-demographics, ways of visiting or communicating with residents, involvement in care tasks, concerns with resident physical/mental health, perceived lack of resident access to care services, and whether caregivers felt well informed/involved with resident care. Our first survey assessed outcomes in the three months before and after pandemic wave 1 (03/2020), our second survey assessed outcomes in pandemic wave 2 (11/2020 -02/2021). Based on 386 responses, in-person visits dropped significantly in wave 1 (91.5% to 30.6%) and so did caregiver involvement in nearly all care tasks (e.g., toileting: 7.5% to 2.6%, social/recreational activities: 73.6% to 25.7%). While these rates increased in wave 2, most did not return to pre-pandemic levels. Caregiver concerns increased in wave 1 (e.g., concerns about residents’ depressed mood: from 21.3% to 50.3%) and stayed high in wave 2. Concerns were particularly high (e.g., >20% higher for depressed mood) among caregivers who did not feel well informed/involved with resident care. Continued caregiver involvement in resident care and communication with caregivers is key to mitigating caregiver concerns and supporting caregiver and resident well-being.

INFRASTRUCTURES OF CAREGIVING: RECONSTITUTING HOMELINESS AND FAMILY IN SINGAPORE

Abstract Caregiving comprises concrete everyday tasks that are built-on and revolve around the home, yet few studies have looked at caregiving as practice(s) that shape the home as a place of/for care. We examined the socio-material arrangements of people, activities, and things that enable caregiving at home, asking how caregiving is orchestrated, sustained, and delivered at home, and how the home is in turn re-constituted by caregiving. In-depth interviews were conducted with 40 family caregivers, aged 55-85 years, caring for their spouse and/or parent(s). Relations, activities, and things that enabled caregiving were analyzed through the theoretical lens of “care infrastructure”. Caregiving is enacted through a network of people and things – including family members, live-in hired helpers, medical and social workers; technologies like surveillance cameras and strategically placed mirrors at home to monitor care recipients; televisions turned-on 24/7; assistive devices such as wheelchairs and ramps, and placement of hospital beds at home, etc. – that change living arrangements and routines. Care tasks, responsibilities, and decisions are marked by negotiations, tensions, and compromises between people and with things. Caregivers appropriate, adapt, and improvise in situations of uncertainty, conflict, and impossible demand. We conclude that new socio-material arrangements of people, activities, and things that emerge because of caregiving change/disrupt the notion of home as a place of safety, familiarity, and comfort for caregivers. Understanding the emplacement/displacement and interconnection of things, activities, and people sheds light on how the home shapes the effects of caregiving and vice versa.

THE PROMINENT ROLE OF HOME CARE AIDES IN END-OF-LIFE CARE DURING A PUBLIC HEALTH EMERGENCY AND BEYOND

Abstract Many patients and families rely on paid aides to provide personal care services at the end of life, but the COVID-19 pandemic caused widespread delays and disruption in this care. Our study examined COVID-related care disruptions among patients in a large, New York City health system who died between March 1, 2020 and March 1, 2021. We linked the electronic health records of 124 patients cared for by a geriatric outpatient practice and referred to hospice to the hospice’s electronic health records, and conducted an in-depth qualitative thematic analysis. We found many home health aides continued caring for existing patients after hospice enrollment, often in tandem with hospice aides. But, patients and families experienced disruption in both usual and hospice aide services due to patient or aide illness, COVID isolation policies, and the exacerbation of ongoing workforce shortages. Aides experienced emotional strain and escalation of care responsibilities including the provision of more clinically-focused end-of-life tasks (e.g., wound care, oxygen administration) usually performed by hospice nurses. When the hospice team was unable to provide home visits, the aide became the primary source of patient information. Hospice staff supported aides in care tasks and provided emotional and spiritual care, often virtually, to aides and patients’ families. Findings highlight the critical role of aides within the care team and its intensification in a crisis, suggesting opportunities to better integrate aides into hospice care teams while providing formal training and support to help aides manage end of life care tasks and emotional demands.

JOB EXPECTATIONS VS. REALITY: WORKPLACE EXPERIENCES FROM THE NURSING HOME FRONTLINES

Abstract Nursing assistants have been at the frontlines of nursing home care, providing direct resident care and services to aging adults. The U.S. Bureau of Labor Statistics projects an increased employment need for nurse aides over the next ten years. However, the annual rate of nurse aide turnover is over 120 percent. To better understand the unique factors that contribute to nurse aide turnover in nursing homes and assisted livings, this sequential mixed-methodological study design reports findings of activities, relationships, and job interactions that contribute to nurse aide turnover. Guided by a socio-ecological model, qualitative findings from 17 nurse aides (N=17) reveal interpersonal factors, such as relationships with others at the workplace and relationships with residents, as impacting turnover. Institutional and Community factors were also found to impact turnover, including staffing levels, resources, education, and compensation. Informed by the interview findings, there were 239 nursing home or assisted living nurse aides (N=239) that participated in the quantitative portion of this study. Over one-quarter of nurse aides (27.80%) reveal that getting to know the residents was one of the best things about working in a nursing home or assisted living. Of direct care tasks, nurse aides reported physical injury or strain (20.16%), and the physical demands of the job (20.16%) as the greatest challenges. Taken together, findings from this study reveal that using community-engaged research methods in nursing home research may lead to a more nuanced understanding of the workplace needs and desires of nursing assistants.

GENDER DIFFERENCES IN PSYCHOLOGICAL OUTCOMES OF DEMENTIA CAREGIVERS

Abstract Substantial research has been conducted on the high prevalence of anxiety and depression among dementia family caregivers. Stressors, such as financial hardships related to costs of care and feelings of role captivity, can exacerbate adverse mental health outcomes. However, there is limited literature focused specifically on gender differences in the caregiving stress process. Using data from a mixed-methods study of 46 dementia family caregivers between the ages of 23-96, the purpose of this study was to examine gender differences in self-reported caregiving stressors (e.g., cost of care, care intensity) and psychosocial outcomes including depression and anxiety. Results showed that compared to females, male caregivers reported greater costs of care, greater feelings of role captivity, higher frequency of assistance with medical/nursing tasks (p=.01) and activities of daily living (ps range from .01-.04). Male caregivers also reported significantly greater distress related to care tasks (p=.04), as well as higher levels of depression (p=.02) and anxiety (p=.05). These findings provide insight into how the informal caregiving experience can vary by caregiver gender and potential factors contributing to these differential outcomes. The data establishes the importance of considering demographic characteristics in providing needed resources to dementia family caregivers.

SECONDARY ROLE STRAIN AND GRIEF OF DEMENTIA FAMILY CAREGIVING AS PREDICTORS OF BURDEN

Abstract Services often aim to improve caregiver experiences for dementia family caregivers by addressing challenges in daily care activities and enhancing care quality for care-recipients. Supporting caregivers should not exclusively focus on supporting activities related to direct care provision (e.g., primary stressors), but should also include services that holistically support the caregiver’s well-being. Identifying an individual’s unique needs beyond their caregiving role is crucial; the growing phenomenon of caregiver burnout, burden, and psychosocial struggle includes experiencing a loss of identity, increased desire to escape, and intense role captivity. While some services are more individualized, such as one-on-one therapy, there is an overall gap in caregiver support in secondary domains. The current study examined whether primary stressors (e.g., activities of daily living and everyday care tasks) or secondary stressors (e.g., strain on other relationships and responsibilities) were more predictive of burden in a sample of 46 participants who completed a mixed-method study examining the heterogenous experiences and unmet needs of dementia family caregivers. Analysis shows that interference of the care role with responsibilities to other family (i.e., secondary role strain) and feeling pre-loss grief over their loved one’s illness were significant predictors of greater burden compared to primary stressors. Results indicate the importance of addressing secondary stressors such as pre-loss grief and deterioration of one’s microenvironment (including social support, familial relationships, and identity) in intervention efforts to better enhance quality of life and well-being in dementia care.

Daily Emotional Experiences in Persons with Parkinson Disease: Relations to Subjective Cognitive Complaints and Quality of Life

Aim This study aims to explore positive and negative emotional experiences during the performance of daily occupations in Persons with Parkinson Disease (PwPD). Methods This cross-sectional study included 32 PwPD and 14 healthy older adults. Participants completed three questionnaires that measured emotional experiences during daily occupations, subjective cognitive complaints, and quality of life. Results PwPD experienced higher rates of negative affect during all occupations. Lower rates of positive affect were found only during personal care tasks. Additionally, experiences of daily negative affect were positively associated with subjective cognitive complaints and negatively associated with quality of life. Conclusion Different rates of positive and negative affect are experienced by PwPD during daily occupations. The experience of daily emotions has implications for understanding emotional processing in neurological populations. Occupational therapy practitioners should consider the role of emotions when providing occupation-based interventions for PwPD.

The impact of taking up care tasks on pensions: Results of typical-case simulations for several European countries

Informal care is often accompanied by a reduction or abandonment of professional activity by the caregiver. Therefore, caregiving may be associated with a lower pension for the former caregiver than for people without care obligations. There is a large gender difference in informal care responsibilities, and this may contribute to the gender pension gap. As the impact of care-related labour market decisions depends on the design of the pension system, we carry out a cross-country comparison, in which we analyse the impact of care obligations in countries with high (Luxembourg), middle (Liechtenstein, Belgium, Portugal) and low (Slovenia) gender pension gaps. Using typical-case simulation models, we examine how the impact of care-related events is mediated by pension rules, given women's labour market decisions. To what extent does working part time or interrupting one’s career at the age of 30 or 54 reduce the later pension benefit? How are these losses mitigated by pension credits that are conditional on caregiving? We find that the mitigating effects are generally strongest in Belgium, followed by Luxembourg and Slovenia. Such credits hardly exist in Portugal, while in Liechtenstein they have only a small impact. However, the consequences of either working part time or interrupting work can also be mitigated via general rules in the system that are unrelated to caregiving (such as in Portugal and Liechtenstein). They can, on the other hand, be aggravated by the existence of higher accrual rates for individuals who extend their careers, as in Luxembourg and Slovenia.