Distress In Family Caregivers Research Articles

Book Review: Family caregiver distress

Book Review: Family caregiver distress

Psychological distress in family caregivers of people with Alzheimer’s disease: Positive and negative aspects of caregiving

Research focusing on family caregivers of people with Alzheimer’s disease (PWAD) has predominantly highlighted the negative aspects of caregiving, reporting variables associated with poor mental health such as depression, anxiety, and burden. In recent decades, efforts have also been made to study positive variables associated with care, such as gain (positive results from the caregiving activity), satisfaction, and quality of life. The present study includes both positive and negative aspects of caregivers of PWAD, aiming to clarify their relationships and how they affect psychological distress. The study employed a cross-sectional descriptive design, enrolling a sample consisting of 140 family caregivers of PWAD. The variables assessed as negative aspects included hours of care per day, perceived burden, and psychological distress, while happiness, gain in caregiving, and quality of life were assessed as positive aspects. The results confirmed that family caregivers of PWAD experience both negative and positive aspects associated with caregiving. The relationship between these aspects is inversed: as the perceived burden increases, the mental health of the caregiver declines, and the positive aspects associated with caregiving decrease. Specifically, the perception of happiness begins to decrease with more than 15 h of care/day, while the perception of gain increases after 10 h of care/day. Respite care or financial aid that helps PWAD family caregivers reduce the number of hours dedicated to caring, along with psychological and support interventions to reduce subjective burden, would result in improved mental health of caregivers of PWAD.

Psychological Distress, Multicare Needs and Social Resource Utilisation of Family Caregivers of People With Dementia: A Descriptive-Correlational Study.

The population of people with dementia increases yearly, imposing a growing burden on family caregivers. Psychological distress impacts the mental health of family caregivers of people with dementia. Caregiver psychological distress can result in increased social resource utilisation and unmet multicare needs. The study explored the psychological distress of family caregivers of people with dementia and examined the impact on social resource utilisation and multicare needs. A descriptive-correlational study collected data in Taiwan from a cross-sectional sample of family caregivers of people with dementia using a self-report questionnaire. Data were analysed using linear and logistic regression. A total of 301 caregivers provided data for analysis. Nearly two-thirds of caregivers were female with a mean age of 57 years old (SD = 12). Over half of the family caregivers of people with dementia experienced mild-to-moderate psychological distress. The greater the psychological distress, the greater the probability of using social resources (1.09 times per 1-point increase, p = 0.002). Psychological distress was positively associated with the number of caregivers' care needs (β = 0.371, p < 0.001). Findings of this study can assist healthcare professionals in better understanding the psychological distress and care needs of caregivers. Services designed to meet the needs of family caregivers will improve psychological distress.

Respect for the Patient-Oncologist Relationship May Limit Serious Illness Communication by Acute and Postacute Care Clinicians After Discharge to a Skilled Nursing Facility

PURPOSE There is a need to increase palliative care access for hospitalized older adults with cancer discharged to a skilled nursing facility (SNF) at risk of poor outcomes. Assessing and Listening to Individual Goals and Needs (ALIGN) is a palliative care intervention developed to address this gap. This study gathered perspectives from clinicians across care settings to describe perceptions on serious illness communication and care coordination for patients with cancer after discharge to a SNF to guide ALIGN refinements. METHODS We conducted 37 semistructured interviews with clinicians and leaders in hospital medicine (n = 12), oncology (n = 9), palliative care (n = 12), home health care (n = 6), and hospice (n = 4). Some participants had experience working in more than one specialty. The Practical Robust Implementation and Sustainability Model framework was used to develop the interview guide that explored barriers to care, prognosis discussions, and hospice recommendations. Interviews were coded and analyzed using thematic content analysis. RESULTS Analysis identified four themes: (1) discharge to a SNF is recognized as a time of worsening prognosis; (2) care silos create communication and information barriers during a period of increasing palliative care need; (3) family caregiver distress escalates following care transitions; and (4) lack of clarity of roles and respect for the patient-oncologist relationship limits prognostic communication and changes in focus of treatment. CONCLUSION These findings suggest that acute and postacute care clinicians defer serious illness conversations to the oncologist when patients are on a steep trajectory of decline, experiencing multiple care transitions, and may have limited contact with their oncologist. There is a need to clarify roles among nononcology and oncology clinicians in discussing prognosis and recommending hospice for older adults discharged to SNF.

Effect of an 8-Week Mindfulness Meditation Training Program on Psychological Distress in Caregivers and on Behavioral and Psychological Symptoms in People with Alzheimer’s Disease: A Randomized Controlled Trial

ObjectivesMental health problems are highly prevalent in people with Alzheimer’s disease (AD) and their family caregivers. Therefore, this study aimed to examine the effects of the Mindfulness-Based Health Care Program (MBHC) on the psychological distress of family caregivers of people with AD and, indirectly, on the behavioral and psychological symptoms of dementia (BPSD) in people with AD.MethodA sample of 66 caregivers of people with AD was randomly assigned to either 8 weeks of MBHC or treatment as usual (TAU) groups. The psychological distress in family caregivers, measured by the Hospital Anxiety and Depression Scale (HADS), and BPSD in patients, measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q), were evaluated and compared at baseline, post-intervention, and 3-month follow-up.ResultsA total of 50 participants (75.6%) completed the MBHC post-intervention and 30 (50%) at the 3-month follow-up. At post-intervention, compared to TAU, MBHC was associated with significantly greater decreases in psychological distress (β = − 3.86; 95%CI, − 7.67, − 0.04; p = 0.047), specifically in anxiety symptoms (β = − 2.84; 95%CI, − 5.38, − 0.30; p = 0.029), but no significant changes were observed in depressive symptoms. MBHC did not produce a significant change in psychological distress at 3-month follow-up. MBHC did not yield a significant reduction in BPSD in people with AD, neither at post-intervention nor at 3-month follow-up.ConclusionsThe results suggest that 8-week mindfulness training can effectively reduce psychological distress and anxiety symptoms in caregivers of people with Alzheimer’s disease.PreregistrationThis study was preregistered on ClinicalTrials.gov (identifier NCT03858283) on 26 February 2019.

The Burden and Psychological Distress of Family Caregivers of Individuals with Autism Spectrum Disorder: A Gender Approach.

Background/Objectives: Relatives play the main role as caregivers of autism spectrum disorder (ASD) individuals. Women, specifically mothers, are the majority of caregivers of ASD relatives. In addition, the literature on caregivers has shown that women have worse mental health and higher perceived burdens than men. Therefore, the aim of this work was to evaluate the relationships between psychological distress and burden using a gender approach in caregivers of ASD relatives. Methods: A cross-sectional design was applied in this study with a convenience sample of 250 caregivers of ASD relatives. Most of them were mothers caring for a child who ranged in age from 1 to 31 years. Sociodemographic variables considered were age, education level, marital status, and relation to the care recipient. Additionally, psychological distress and objective burden, in the form of hours/day caring, and subjective burden, in the form of perceived burden, were analyzed. Results: Significant gender differences were found in psychological distress and objective and subjective burden, with women showing higher scores than men. Both types of burden played a serial mediating role between gender and psychological distress. Conclusions: The results highlight the important role of gender, with women bearing the high cost of caring for their children with ASD in the form of high objective burden, caring for more hours, and subjective burden, perceiving more burden and showing poorer mental health than men. These results show the need for specific support and intervention programs targeted to women caregivers to reduce burden and improve their mental health.

Effects of dignity therapy on psychological distress and wellbeing of palliative care patients and family caregivers – a randomized controlled study

BackgroundThis study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs.MethodsIn this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention.ResultsThe coalesced group (DT and DT +) revealed a significant increase in patients’ perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group’s HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation.ConclusionsThe DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one’s final days.Trial registrationThis study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.

FC31: Profiles of dementia caregivers according to psychosocial variables. Importance of kinship.

Objectives:Caring for a family member with dementia may have important negative psychological consequences on caregivers. The present study aims to analyze the existence of different profiles in family caregivers of people with dementia according to the levels manifested in different psychosocial variables, which are grouped into psychosocial variables (dysfunctional thoughts, familism, experiential avoidance) and resources (leisure and social support). In addition, it aims to study whether there are differences among those profiles in the levels of distress (depressive, anxious and guilt symptomatology) depending on the relationship of kinship with the cared-for person.Methods:288 family caregivers of people with dementia divided into four kinship groups (wives, husbands, sons and daughters) participated. Face-to-face interviews were conducted assessing sociodemographic variables, familism (family obligations), dysfunctional thoughts, experiential avoidance, leisure activities, perceived social support and depressive, anxious and guilt symptomatology. A hierarchical cluster analysis was performed using Ward's method and contingency tables were run between the clusters obtained and the variable of kinship and distress variables.Results:Five clusters were obtained: Low psychosocial vulnerability-High resources (mostly daughters), Low psychosocial vulnerability-Low resources (mostly daughters), Mixed (mostly sons), High psychosocial vulnerability-High resources (mostly husbands) and High psychosocial vulnerability-Low resources (mostly wives). Although with nuances, the clusters associated with lower distress are the Low psychosocial vulnerability-High resources profile and the High psychosocial vulnerability-High resources profile, and with higher distress the Low psychosocial vulnerability-Low resources profile and the Mixed profile.Conclusions:High levels of dysfunctional thoughts, familism and experiential avoidance are not always associated with greater psychological distress. In fact, profile 2 (Low psychosocial vulnerability-Low resources), in which most caregiving daughters are distributed, seems to be particularly vulnerable to presenting higher levels of emotional. Therefore, the identification of profiles of potential protection and vulnerability to psychological distress in family caregivers could help to increase the effectiveness of interventions aimed at this population.

Psychological Distress in Alzheimer’s Disease Family Caregivers: Gender Differences and the Moderated Mediation of Resilience

Different studies have reported gender differences in the variables of psychological distress, burden, social support, and resilience in family caregivers of relatives with Alzheimer’s disease; however, there is no clear evidence of the specific role of burden, social support, and resilience between gender and psychological distress. The aim of the present study is to clarify the role of these variables. Burden, psychological distress, social support, and resilience have been assessed in a cross-sectional design with a convenience sample of 140 family caregivers of relatives with Alzheimer’s disease. Our results confirm gender differences in terms of psychological distress, with higher scores found in female than in male caregivers, whilst male caregivers showed higher scores in terms of resilience than female caregivers. No gender differences have been found in terms of burden and social support. In addition, moderated mediation was obtained via the interaction of gender and social support on resilience, which plays a mediating role in psychological distress. Social support and resilience have shown a protective role concerning the mental health of caregivers, but female caregivers need higher social support to present a similar level of resilience to male caregivers.

Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta-analysis.

Caregiving for a loved one is challenging and requires significant resources. Existential distress in family caregivers may include hopelessness, demoralization, fear of death, pre-loss grief, or a sense of not being emotionally prepared. The aim of this systematic review is to synthesize the quantitative literature on existential distress among family caregivers of patients with advanced cancer, focusing on its prevalence, association with mental disorders, as well as with sociodemographic, disease, and treatment-related factors. We systematically searched electronic databases for quantitative studies of the above-described existential distress concepts in family caregivers of patients with advanced cancer. Two independent reviewers extracted data and evaluated study quality. Data were analyzed using random-effects meta-analysis. We retrieved 17.587 records, of which 31 studies fulfilled inclusion criteria. 63% of the studies (n=20) provided sufficient data for meta-analysis for 5558 patients. We found an overall pooled prevalence of 30.6% for existential distress, 95% CI [24.2-37.0]. For existential distress subconcepts, prevalence rates were 57.0%, 95% CI [37.8-76.2], for death anxiety, 13.9%, 95% CI [10.8-17.0], for demoralization, 24.0%, 95% CI [18.0-30.0], for pre-loss grief, 18.4%, 95% CI [4.0-32.7], for hopelessness, 35.2%, 95% CI [28.2-42.2], for loneliness, and 35.6%, 95% CI [13.0-58.3], for emotional unpreparedness. Approximately one third of the respondents were affected by high levels of existential distress. The review provides evidence for further development of support services that can reduce existential distress, focused on death anxiety, and improve the quality of life for family caregivers of patients with advanced cancer.

Family Caregivers' Trajectories of Distress While Caring for a Person With Serious Mental Illness.

Serious mental illness (SMI) can significantly impact the lives of individuals and their families. These families often experience great emotional distress over time due to the early onset of SMI, which in turn leads to long-term trajectories and only partial recovery. However, we do not fully understand the emotional distress of family caregivers. Thus, our aim was to enrich the understanding of the lived experiences of family caregivers' emotional trajectories of distress while caring for persons with SMI. We conducted a secondary analysis using a hermeneutic approach to the narratives of seven family caregivers from a study on living with voices unheard by others. Participants' trajectories of emotional distress came forth as being thrust on an unpredictable, intensely worrisome, and indefinite journey. The following themes highlighted this tumultuous journey: fumbling in the dark trying to grasp the incomprehensible, "on your toes"-enduring unpredictability, facing different forms of fear, and battling waves of sadness and regret. Caregivers face multiple threats to their well-being and sometimes even to their health. Their distress appeared to vary according to their relationship with the person with SMI, whether they lived with the ill person, illness trajectory, and amount of violent or suicidal behavior. The results underscore the need for individualized and timely information, opportunities for dialogue with healthcare providers with and without the person with SMI, and inclusion in care planning. Caregivers who have experienced trauma, threats of violence, and rejection require special attention.

Poster (Knowledge Generation) ID 1969461

Background Individuals with SCI often receive care from their family members. Caregiving responsibilities lead to caregiver burden. Receiving social support may mitigate the negative impacts of caregiving. Caregivers can obtain support from people they meet in-person, such as family members and people with whom they interact through social platforms. Objectives Our objective was to investigate the moderating effect of in-person and online social supports on the association between relationship quality, caregiver competence, caregiver distress and caregiver burden. Methods/Overview 115 caregivers who resided in Canada or the United States, understood and spoke English, and self-identified as primary family caregivers of an individual with SCI were sampled. Participants completed measures assessing relationship quality, competence, distress, burden, and in-person and online social support. Three separate moderation analyses for each outcome variable (i.e. relationship quality, competence, and distress), were conducted. In analyses, burden was the predictor, and online and in-person support were moderators. Results Moderation analyses showed that online support moderates the link between caregiver burden and distress. Slope analyses revealed that the positive relationship between burden and distress was weaker when caregivers reported lower levels of online support (p=0.005); this relationship was more robust when caregivers reported higher levels of online support (p &amp;lt;.001). Other moderation analyses were not statistically significant. Conclusions Online support increases distress in family caregivers. It is likely that comparing their life with other caregivers or being exposed to other caregivers’ grief negatively affects caregivers. More research is needed to understand how online support impacts caregivers negatively.

Existential distress in family caregivers: scoping review of meaning-making interventions

ObjectivesFamily and friend caregivers often feel overwhelmed by and ill-prepared for their responsibilities. Many feel helpless living with uncertainty about the outcome of the patient’s illness, which leads to existential...

Effect of a Mobile Training Application on Psychological Distress of Family Caregivers of Patients With Chronic Obstructive Pulmonary Disease

Objective Chronic obstructive pulmonary disease is one of the most common causes of death in the world, which affects the functional level of patients due to its progressive nature. disabilities caused by the disease lead to the dependence of these patients on family caregivers. Following the changes in caregivers’ lives, most family caregivers are exposed to psychological distress. Involving caregivers in pulmonary rehabilitation training for patients is one of the ways to reduce psychological distress. Considering the emergence of the digital age and the limitations of face-to-face training such as time and cost, mobile phone-based applications are available as one of the new methods for providing educational support to caregivers. Therefore, this study was conducted with the aim of determining the effect of the pulmonary rehabilitation application on the psychological distress of caregivers of people with chronic obstructive pulmonary disease. Materials &amp; Methods This study is a field trial conducted on 70 family caregivers of people with chronic obstructive pulmonary disease. The samples were selected as available from the Sun Breathing Comprehensive Clinic and after checking the inclusion criteria, they were randomly assigned to intervention and control groups by minimization software. The intervention group used mobile phone-based pulmonary rehabilitation training application for 6 weeks. For the control group, face-to-face pulmonary rehabilitation training (routine) was provided in the form of 12 sessions during 6 weeks. The data collection tool included Kessler’s demographic information and psychological distress questionnaires, which were completed by caregivers before and after the intervention. Data analysis was done using SPSS version 24 software and Mann-Whitney, Chi-square and independent and paired t tests. Results According to the findings, the two groups were homogeneous in terms of demographic characteristics. The average age of caregivers in the intervention and control groups was (44.1±14.8), (47.7±13.8) years, respectively. In the intervention group, 71.4% were female caregivers and in the control group, 82.9% were female caregivers (P&gt;0/05). Before the intervention, there was no significant difference in terms of psychological distress between the test and control groups (P&lt;0.05), but after the intervention, there was a significant difference between the two groups in terms of psychological distress (P=0.001). The average score of psychological distress before and after the intervention in the intervention group was (14.97±6.65) and (10.25±4.50) respectively, and there was a significant decrease (P&lt;0.000), but the psychological distress in the control group was (15.68±7.91). 5.42±14.60) had no significant change (P&lt;0.05). Conclusion The results of this study indicate that training through a mobile-based pulmonary rehabilitation application may be useful in reducing the psychological distress of family caregivers of chronic obstructive pulmonary disease. Therefore, since the favorable mental state of caregivers has a significant effect on the quality of care provided , it is recommended to use this method in the training of caregivers of chronic obstructive pulmonary disease.

Depression, anxiety and insomnia in Chinese older adults and their family caregivers during the COVID-19 pandemic: an actor-partner interdependence model approach.

This study aimed to explore the dyadic effects of depression and anxiety on insomnia symptoms in Chinese older adults and their caregivers living in a community setting. Data were collected from 1,507 pairs of older adults and their caregivers who were in the Guangdong Mental Health Survey in China. The 9-item Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder module 7 (GAD-7), and Insomnia Severity Index (ISI) were used to measure depression, anxiety, and insomnia symptoms. Actor-Partner Interdependence Models (APIM) were used to determine whether anxiety or depression symptoms predicted individual or dyadic insomnia. Older adults' and caregivers' depression and anxiety had significant positive correlations with their own and their caregivers' insomnia symptoms (all P < 0.001). Actor effects were found between depression and insomnia symptoms in both older adults and caregivers (B = 0.695, P < 0.001; B = 0.547, P < 0.001, respectively), with one significant partner effects (B = 0.080, P = 0.007). Actor effects were also found between anxiety and insomnia symptoms in both older adults and caregivers (B = 0.825, P < 0.001; B = 0.751, P < 0.001, respectively), with one significant partner effects (B = 0.097, P = 0.004). However, the caregivers' depression and anxiety were not associated with older adults' insomnia symptoms in the APIM analyses. Older adults and their caregivers had an interrelationship between psychological distress and insomnia. Consequently, healthcare providers might consider involving dyads when designing programs to reduce insomnia and improve psychological distress for family caregivers.

Validation of the Psychosocial Assessment Tool 2.0 for paediatric burn patients

ObjectiveThe Psychosocial Assessment Tool 2.0 (PAT-B) is an adaptation of an existing screening tool with the aim of the present study to examine its effectiveness and suitability to identify children and families at risk of emotional, behavioral, and social maladjustment following paediatric burns. MethodsSixty-eight children aged between 6 months - 16 years (M = 4.40) admitted into hospital following paediatric burns, and their primary caregivers, were recruited. The PAT-B comprises several dimensions including family structure and resources, social support, as well as caregiver and child psychological difficulties. Caregivers completed the PAT-B and several standardized measures for validation purposes (e.g., caregiver reports of family functioning, child emotional and behavioural problems, caregiver distress). Children old enough to complete measures reported on their psychological functioning (e.g., posttraumatic stress and depression). Measures were completed within 3 weeks of child admission and then again at 3 months after burn. ResultsThe PAT-B demonstrated good construct validity, evidenced by moderate to strong correlations between the PAT-B Total and subscale scores and several criteria measures (family functioning, child behaviour and caregiver distress, child depressive symptoms, rs ranging from 0.33 −0.74). Preliminary support for criterion validity of the measure was observed when examined against the three tiers of the Paediatric Psychosocial Preventative Health Model. The proportion of families falling within these tiers of risk (Universal [low risk], 58.2%; Targeted, 31.3%; or Clinical range, 10.4%) was consistent with prior research. Sensitivity of the PAT-B to identify children and caregivers at high risk of psychological distress was 71% and 83%, respectively. ConclusionThe PAT-B appears to be a reliable and valid instrument for indexing psychosocial risk across families who have sustained a paediatric burn. However, further testing and replication using a larger sample size is recommended before the tool is integrated into routine clinical care.

Associations between Affiliate Stigma and Quality of Life among Caregivers of Individuals with Dementia

Introduction: The associations between affiliate stigma, caregiving burden, psychological distress, and quality of life (QoL) among family caregivers of people living with dementia (PwD) have been demonstrated in the literature. However, there is a dearth of literature regarding how these factors could form a psychological mechanism. The present study proposed a theoretical model to portray the relationships between these factors. Methods: Utilizing convenience sampling and cross-sectional study design, 275 family caregivers (145 females [52.7%]; mean age = 52.71 years) were recruited from a general hospital from October 2013 to September 2014. Each participant completed the following instruments in a quiet room in the general hospital without disturbance: Caregiver Burden Inventory, World Health Organization QoL Questionnaire-Brief, Affiliate Stigma Scale, and Beck Anxiety Inventory alongside the Taiwan Depression Questionnaire (assessing psychological distress). Structural equation modeling was used to examine the proposed theoretical model. Results: Affiliate stigma (standardized coefficient [β] = −0.338; P = 0.011) and psychological distress (β = −0.538; P &lt; 0.001) were negatively associated with QoL, caregiving burden was positively associated with psychological distress (β = 0.818; P &lt; 0.001), and affiliate stigma was positively associated with caregiving burden (β = 0.793; P &lt; 0.001). Moreover, a significant mediated effect was observed between affiliate stigma and QoL via sequential mediators of caregiving burden and psychological distress (unstandardized coefficient = −1.17 and 95% confidence interval = −1.88, −0.46). Conclusion: Affiliate stigma, caregiving burden, and psychological distress are key factors contributing to low QoL among family caregivers of PwD. Health-care providers should design programs to help reduce affiliate stigma, caregiving burden, and psychological distress for family caregivers of PwD to facilitate their QoL.

Behind the Scenes of a Technologically Enhanced Intervention for Caregivers of People With Dementia: Protocol for a Feasibility and Acceptability Study.

Alzheimer's disease affects 55 million people worldwide. As the disease progresses, these individuals require a devoted caregiver, often a family member, who provides evolving complex care. Caregivers can experience a variety of ongoing stressors, resulting in reductions in caregiver emotional well-being (and other quality-of-life indicators). Information and communication technologies provide an excellent opportunity to train caregivers remotely and help them to manage these stressors and related distress. This protocol describes the theoretical rationale, study design, and methods of a new, technologically enhanced psychoeducational skill-building intervention for caregivers of people with dementia that includes a virtual reality component. Through Alzheimer's Eyes is a 4-week, single-arm, pre-post test pilot study consisting of 4 sessions of 90 minutes each that are delivered by videoconferencing. These sessions include a weekly virtual reality experience characterizing the journey of an older Latina with Alzheimer's disease from her perspective to help caregivers see through the eyes of a person with dementia. The 4 sessions cover the skill-training topics of communication, managing challenging behaviors and unhelpful thoughts, the importance of self-care, and mindfulness-all of which are key components designed to reduce stress and distress in family caregivers. Individual interviews conducted before and after the intervention gather participant insights into the intervention, evaluate its feasibility and acceptability, and assess its impact on key outcomes. Data collection for the study started in January 2022, and the results are expected to be submitted for publication in the second half of 2023. Twenty caregivers from the United States have completed the workshop to date. Preliminary data gathered from these participants support the intervention's feasibility and acceptability. Through Alzheimer's Eyes leverages existing technology combined with psychoeducational skill building to help caregivers manage their stress, regardless of their location. DERR1-10.2196/42655.

Factors Affecting Psychological Distress in Family Caregivers of Critically Ill Patients: A Qualitative Study.

Family caregivers often experience psychological distress during a critical care hospitalization, potentially compromising their ability to function effectively in a supportive role. A better understanding of the sources of family caregiver distress is needed to inform strategies to mitigate its development and impact. To explore sources of family caregiver psychological distress during a critical care hospitalization and how caregivers' experiences may differ by their anxiety level. Forty adult family members of patients receiving mechanical ventilation for more than 72 hours in 2 intensive care units at an academic medical center were interviewed. A qualitative directed content analysis was done. Experiences were compared by anxiety level group, defined using the Hospital Anxiety and Depression Scale: anxiety (n = 15), borderline anxiety (n = 11), and low anxiety (n=14). Most family members (32%) were adult children; no major demographic differences were noted across anxiety groups. Among caregivers in the anxiety group, salient factors included early unknowns around critical illness, health care team processes, care decisions made, financial and housing concerns, family dysfunction, and new responsibilities. In general, low-anxiety family caregivers did not express their concerns using language of distress but rather expressed emotion and disappointment and often took action to process their concerns. Factors influencing family caregiver distress during the critical care stay were wide-ranging and varied by level of anxiety. The findings highlight several key areas and potential interventions to reduce psychological distress, especially among caregivers with anxiety.

Timely Identification of Patients With Cancer and Family Caregivers in Need of End-of-Life Discussions by Home-Visit Nurses in Japan: A Qualitative Descriptive Study

End-of-life (EOL) discussions for patients with cancer are a key factor of successful EOL care; however, identifying the optimal timing for these discussions in Japanese home-care settings is difficult. To identify the time at which patients with cancer and their caregivers need EOL discussions, we explored when home-visit nurses start EOL discussions. We interviewed 23 home-visit nurses and analyzed the data using qualitative content analysis. Three themes were derived from the analysis. Participants identified the timing of EOL discussions as being sensitive to patients’ changing health and care needs (increases in patient’s total pain), changes in the family caregiver’s physical or mental condition through daily care (increases in family caregiver distress), and the EOL process that patients follow (trajectory of disease). Developing a tool or in-service educational program that will enable inexperienced or new graduate home-visit nurses to implement EOL discussions at appropriate times is necessary.