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1.
Gerontologist ; 2024 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-38661552

RESUMO

BACKGROUND AND OBJECTIVES: Home- and community-based services (HCBS) are underutilized, despite offering significant health benefits to both care recipients and caregivers. Drawing upon Andersen's extended behavioral model of health services use, we examined individual and county-level factors influencing HCBS utilization for dementia care in rural Appalachia. RESEARCH DESIGN AND METHODS: We analyzed data from telephone interviews with 123 dementia family caregivers in rural Appalachian counties (Mage = 64.7, SDage = 12.2). Multilevel analyses were conducted to examine the effects of individual-level and county-level factors on the use of home-based services (home health care and personal care services) as well as community-based services (adult day care and transportation services). RESULTS: Results indicated that caregivers' receipt of informal support from family or friends were associated with more use of home-based services (B = 0.42, p = 0.003). Conversely, longer travel times to service providers were linked to use of fewer community-based services (B = -0.21, p < .001). Residing in counties with more home health agencies was associated with higher utilization of home-based services (B = 0.41, p = 0.046). However, higher county tax expenditures for HCBS were not linked to home-based or community-based service use. DISCUSSION AND IMPLICATIONS: Findings suggest that informal support in caring for the person living with dementia enables HCBS use in rural Appalachia. In contrast, limited geographic accessibility and service availability can impede HCBS use in rural regions. Policymakers are urged to allocate direct public funding to service providers to expand service availability in under-resourced rural regions.

2.
J Multidiscip Healthc ; 17: 1541-1548, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38623394

RESUMO

Objective: This study explores the correlation between coping style, quality of life, and illness uncertainty in the family caregivers of patients with liver cancer. Methods: Employing convenience sampling, 210 family caregivers of patients with liver cancer who met the admission criteria were selected from a grade A infectious disease hospital in Beijing between January and December 2022. A cross-sectional survey was conducted using the Simplified Coping Style Questionnaire, Caregiver Quality of Life, and the Mishel Uncertainty in Illness Scale for Family Members. This study analysed the correlations between coping styles, quality of life, and illness uncertainty in these caregivers. Results: The study found that family caregivers of patients with liver cancer had average scores for illness uncertainty (83.44 ± 11.86), coping style (33.19 ± 9.79; both positive [23.02 ± 6.81] and negative [10.17 ± 5.05]), and quality of life (169.53 ± 32.46). A negative association was observed between illness uncertainty in these caregivers and positive coping style (r = -0.207, p = 0.003), physical status (r = -0.182, p = 0.008), psychological status (r = -0.200, p = 0.004), and social adaptation (r = -0.229, p = 0.001). Conclusion: The study concludes that illness uncertainty in family caregivers of patients with liver cancer is at a moderate level. Furthermore, there is a notable correlation between illness uncertainty, coping style, and quality of life in these caregivers.

3.
JMIR Aging ; 7: e53489, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38574360

RESUMO

BACKGROUND: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. OBJECTIVE: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. METHODS: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). RESULTS: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. CONCLUSIONS: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2022-070499.


Assuntos
Terapia de Aceitação e Compromisso , Demência , Intervenção Baseada em Internet , Humanos , Cuidadores/psicologia , Estudos de Viabilidade , Demência/terapia
4.
Support Care Cancer ; 32(4): 266, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38568470

RESUMO

BACKGROUND: Family caregivers, also known as informal caregivers, are critical for the home care of patients with urostomy. The present study aimed to investigate the benefits of family caregivers in China while taking care of patients with urostomy from a positive perspective. METHODS: A qualitative research design was adopted, with a thematic analysis. The qualitative research software NVivo was used for data analysis. Twenty-two family caregivers of urostomy patients participated in an in-depth interview for 60-90 min. A qualitative analysis was performed using a thematic approach in accordance with the six-stage thematic analysis process reported by Braun and Clarke (2006). RESULTS: The following four benefits were identified: mastering knowledge and skills, promoting self-growth, establishing close family ties, and changing the way of life. Among these four themes, 11 sub-themes were constructed by coders. CONCLUSIONS: This study provides new insights into intervention measures for family caregivers of patients with urostomy, which could play an important role in developing the overall model of family-centered nursing.


Assuntos
Cuidadores , Serviços de Assistência Domiciliar , Humanos , China , Pesquisa Qualitativa , População do Leste Asiático
5.
J Aging Soc Policy ; : 1-11, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38626336

RESUMO

As the population ages and supportive services are increasingly delivered in home- and community-based settings, greater demands are placed on family caregivers. This essay introducing the special issue of the Journal of Aging and Social Policy discusses signs of progress on policies to ease the burden on family caregivers. It introduces a series of articles that reflect the growing body of research on caregiver-related policy actions. These actions range from expanding access to paid family leave and payment for providing care, to ensuring access to better data about family caregivers and improving the post- hospital discharge experiences of rural and underserved caregivers. It also explores a major conundrum around caregiving policy - why progress on family caregiving policy has been so slow, despite its clear importance to the health and welfare of those who receive supports, as well as to those providing supports. In addition, the essay discusses developments, such as Biden administration actions and the RAISE Family Caregiver Advisory Council, indicating that the political dynamic around caregiving has changed, concluding that this is a uniquely hopeful time for family caregiver-related policy.

6.
J Fam Nurs ; : 10748407241231342, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629802

RESUMO

Family nursing researchers are charged with addressing the conceptual and methodological underpinnings of family research when developing family-focused interventions. Step-by-step guidance is needed that integrates current science of intervention development with family science and helps researchers progress from foundational work to experimental work with policy integration. The purpose of this manuscript is to provide pragmatic, evidence-based guidance for advancing family intervention research from foundational work through efficacy testing. Guidance regarding the development of family interventions is presented using the first three of Sidani's five-stage method: (a) foundational work to understand the problem targeted for change; (b) intervention development and assessment of acceptability and feasibility; and (c) efficacy testing. Each stage of family intervention development is described in terms of process, design considerations, and policy and practice implications. Examples are included to emphasize the family lens. This manuscript provides guidance to family scientists for intervention development and implementation to advance family nursing science and inform policy.

7.
Palliat Med ; 38(4): 423-446, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38634233

RESUMO

BACKGROUND: People with life-threatening diseases and their family caregivers confront psychosocial and spiritual issues caused by the persons' impending death. Reviews of death education interventions in the context of life-threatening diseases are scarce and limited to certain intervention types. AIMS: This study aims to ascertain existing evidence on death education interventions for the population of adults with advanced diseases and/or their family caregivers and identify gaps for future research. DESIGN: A scoping review guided by Arksey and O'Malley's framework. DATA SOURCES: Thirteen electronic databases were searched for experimental and qualitative studies on death education interventions for the advanced disease population and/or their family caregivers between 1 January 1960 and 25 October 2023. RESULTS: Nine types of interventions were identified in 47 studies, which included 5 qualitative and 42 experimental designs, half of which were pilot and feasibility trials. Most of the studies focused on people with advanced cancer, and only seven investigated caregivers or families/couples. Death-related outcomes were less likely to be assessed relative to psychological outcomes, spiritual well-being, and quality of life. Life review interventions, cognitive-behavior therapy, narrative therapy, and general psychosocial interventions decreased depression and anxiety, but evidence was limited. Factors contributing to the interventions' success included intervention content, which enabled the disclosure of personal experience and death concerns comfortably, trained professionals, and connection to family caregivers. CONCLUSIONS: This work identified a few potentially effective death education interventions for psychological outcomes for people with advanced cancer or their caregivers. Additional trials are needed to confirm the effectiveness of these interventions.


Assuntos
Cuidadores , Neoplasias , Adulto , Humanos , Cuidadores/psicologia , Qualidade de Vida , Ansiedade , Transtornos de Ansiedade
8.
J Gerontol Soc Work ; : 1-17, 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38564332

RESUMO

We analyzed 756 family caregivers (mean age = 62.3 years), investigating how emotional support from older care recipients was linked to caregivers' self-efficacy through caring relationship qualtiy. Results indicate a significant positive association between emotional support and caregivers' self-efficacy (r = 0.207, p < .01). Caring relationship quality positively correlated with emotional support (r = 0.292, p < .01) and caregivers' self-efficacy (r = 0.141, p < .01). Controlling for socialdemographic and care-related factors, relationship quality partially mediated the association between emotional support from care recipients and caregivers' self-efficacy. This suggests that interventions supporting caregivers' self-efficacy may benefit from considering both care recipients and dyadic relationships.

9.
Heliyon ; 10(7): e28593, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38576586

RESUMO

Background: Family involvement and comfort are equally important in palliative care. Dignity undertook a new meaning and novel challenges as a result of restrictions on visits and companionship during the pandemic. Family-centered family dignity interventions have been shown to be effective in increasing patients' sense of dignity, increasing levels of hope, and reducing psychological distress; however, the effectiveness in enhancing family adaptability and intimacy in the survivor-caregiver binary and reducing expected grief have been inconclusive. Objectives: The primary objective of this study was to assess the efficacy of family dignity interventions on family adaptability and cohesion. The secondary objective was to explore the effects of the interventions on anticipatory grief and psychological distress, and the lasting effect 1 month after the intervention. Design: A single-blinded, two-arm parallel group, randomized controlled trial was conducted in China. Settings: and methods: Ninety-eight dyads who met the inclusion criteria were randomly assigned to the family dignity intervention (n = 51) or standard palliative care group (n = 47) between June and August 2022. Study outcomes were measured at baseline, immediately post-intervention, and at the 1-month follow-up post-intervention evaluation. Data were analyzed using the Kolmogorov-Smirnov test, chi-square test, Fisher's exact test, independent sample t-test, Wilcoxon rank-sum test, and generalized estimation equations. The Intention-To-Treat analysis was performed for all available data. Results: In comparison to the control group, significant improvements in family adaptability and cohesion and anticipatory grief over post-intervention and 1-month follow-up were demonstrated among the patients in the intervention group. The intervention group of caregivers had significant improvement in anticipatory grief at post-intervention and 1-month follow-up. The level of psychological distress was significantly lower in the intervention group than the control group (p < 0.05) at 1-month follow-up but the differences were not statistically significant at post-intervention. All outcomes showed clear differences from baseline after the intervention and at the 1-month follow-up evaluation but not between post-intervention and at the 1-month follow-up evaluation. Conclusion: This study further verifies the actual effect of family dignity intervention program through randomized controlled trials, and provides a reference for improving the family relationship between advanced cancer patients and their family caregivers, and improving their mental health. The addition of family dignity intervention to standard palliative care greatly increased the adaptability and cohesion between survivors and their families, lessened the anticipatory grief of the survivor-caregiver pair, and relieved caregivers' anxiety and despair. We did not detect a statistically significant difference between post-intervention and the 1-month follow-up evaluation, suggesting that the intervention may have a durable impact at least 1 month.

10.
Eur J Oncol Nurs ; 70: 102557, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38581900

RESUMO

PURPOSE: To investigate the preparedness, perceived stress, risk of depression, and quality of life of family caregivers of patients receiving a temporary enterostomy, to provide a reference for improving the long-term care and quality of life of patients receiving a temporary enterostomy. METHODS: We enrolled 181 family caregivers of patients in a hospital in China from 2021 to 2023. Responses to the General Information Questionnaire, the Chinese Caregiver Preparedness Scale, the Chinese Perceived Stress Scale, the Chinese bilingual version of the Patient Health Questionnaire-2, and the 12-item Short Form Survey were collected online. RESULTS: Pearson's correlation analysis revealed that family caregivers' risk of depression was negatively correlated with their preparedness, the physical component summary score, and the mental component summary score but was positively correlated with perceived stress. Multiple linear regression analysis identified factors influencing caregiver preparedness. CONCLUSIONS: These findings help healthcare personnel to identify high-risk individuals among family caregivers of patients receiving a temporary enterostomy. This provides a basis for formulating well-planned, dynamic health education programs that meet patients' needs for disease-related knowledge and care.

11.
Cleft Palate Craniofac J ; : 10556656241244976, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38557293

RESUMO

OBJECTIVE: To explore the experiences and perceptions of barriers of parents and family members of patients with cleft lip and palate in accessing cleft services in remote northwest Nigeria. DESIGN: Face-to-face semi-structured audio recorded interviews were used to obtained qualitative textual data. Thematic analysis using interpretative descriptive techniques was employed to understand the participants' lived experiences with barriers and accessibility to cleft services. SETTING: Participants were from Sokoto, Kebbi and Zamfara states in remote northwest, Nigeria. PARTICIPANTS: Consisted of 22 caregivers (17 parents and 5 extended family members) were purposively sampled between 2017 and 2020. MAIN OUTCOME MEASURES: Barriers experienced while accessing cleft services were identified during thematic analysis. RESULT: Over three quarter of the respondents had patients with both cleft lip and palate and without any previous family history (n = 20). About two-thirds of the participants (n = 15) were females. Most of the interviews were conducted before the surgeries (n = 15). FIVE THEMES EMERGED: lack of information, financial difficulty, misrepresentation from health workers, multiple transportation and previous disappointment. CONCLUSIONS: Areas of poor awareness, misinformation from primary health care workers, financial hurdles, multiple transportation logistics and others were identified. Aggressive broadcasting of information through radio, timely treatment and collaboration with influential religious leaders were emphasized. Support, grants and subsidies from government and voluntary agencies are encouraged to mitigate the huge out of pocket cost of cleft care in the region.

12.
Acad Pediatr ; 2024 Apr 10.
Artigo em Inglês | MEDLINE | ID: mdl-38609015

RESUMO

OBJECTIVES: Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC). METHODS: Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics. RESULTS: Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all p <.001). Whereas participants reported a significantly higher sense of meaning and purpose (p<.05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race/ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being. CONCLUSION: Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health. WHAT'S NEW: In this cross-sectional survey of family caregivers of children with medical complexity, caregivers reported clinically significantly poorer global mental health, higher emotional distress, and reduced sleep-related health. This study provides potential therapeutic targets for future psychosocial interventions.

13.
BMC Public Health ; 24(1): 1030, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38609905

RESUMO

BACKGROUND: Patients with advanced breast cancer require consistent help and support from family caregivers. These caregivers often endure financial burdens and psychological stress, with their experiences significantly influenced by sociocultural factors. This study aims to explore the experiences of family caregivers of advanced breast cancer patients in Punjab province, Pakistan. METHODS: Data was collected through in-depth interviews with fifteen family caregivers of advanced breast cancer patients in three major cities of Punjab, Pakistan. Caregivers, who had been in close contact with the patient for the last two years, were purposively sampled from five major hospitals. The data was analyzed using thematic analysis. RESULTS: The study revealed that the experiences of family caregivers are deeply rooted in the sociocultural context. Key themes identified include social responsibility and cultural reciprocity norms; limited awareness and mobility options for caregivers; financial responsibility and strain; impacts of beauty myths and shyness on caregiving attitudes and decisions; the stressful and emotional nature of caregiving; treatment perspectives influenced by social groups; challenges in consulting male physicians and associated stigma; the role of religious beliefs in caregiving; and stress management, with religion often being a coping mechanism. These factors can contribute to delayed treatment decisions for patients. CONCLUSIONS: Family caregivers are crucial in facilitating timely treatment decisions for advanced breast cancer patients in the Pakistani context. To minimize treatment delays and alleviate caregiver stress, addressing sociocultural barriers in care-seeking is essential. A tailored approach, considering sociocultural and religious factors, is imperative for the management and early diagnosis of breast cancer, necessitating appropriate policymaking and implementation.


Assuntos
Neoplasias da Mama , Cuidadores , Humanos , Masculino , Paquistão , Neoplasias da Mama/terapia , Fardo do Cuidador , Pesquisa Qualitativa
14.
Nihon Ronen Igakkai Zasshi ; 61(1): 45-53, 2024.
Artigo em Japonês | MEDLINE | ID: mdl-38583970

RESUMO

OBJECTIVE: To examine the relationship between the dissatisfaction of family caregivers with diabetes treatment and depressive symptoms among the elderly. METHODS: The subjects were diabetic patients of 65 years of age or older and their family caregivers, who were outpatients at Ise Red Cross Hospital. The Japanese version of the Patient Health Questionnaire 9, which consists of nine items, was used to measure depressive symptoms. The Japanese version of the Treatment Satisfaction Scale for Caregivers of Dependent Diabetic Patients (STCD2-J) was used to measure the satisfaction of family caregivers with diabetes treatment. A logistic regression analysis was performed using depressive symptoms as dependent variable, satisfaction of the family caregiver with diabetes treatment as an explanatory variable, and adjustment variables. RESULTS: In total, 272 patients were included in the analysis. Taking the quintiles of STCD2-J scores, the adjusted odds ratios for patient depressive symptoms in Q2 (27-29), Q3 (24-26), Q4 (22-23) and Q5 (14-21) based on Q1 (30-36) (the group with the highest STCD2-J scores) were 2.44 (95% confidence interval (CI), 0.69-8.61; P=0.163), 3.08 (95% CI, 0.93-10.12; P=0.063), 2.69 (95% CI, 0.68-10.65; P=0.156), and 4.54 (95% CI, 1.44-14.32; P=0.010), respectively. CONCLUSION: We found that family caregivers' decreased satisfaction with diabetes treatment was associated with depressive symptoms. It is important to alert primary care physicians about depressive symptoms when they see family caregivers who show decreased satisfaction with diabetes treatment.


Assuntos
Cuidadores , Diabetes Mellitus , Humanos , Idoso , Depressão , Satisfação do Paciente , Diabetes Mellitus/terapia , Satisfação Pessoal
15.
Front Public Health ; 12: 1334842, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38584929

RESUMO

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.


Assuntos
Cuidadores , Neoplasias , Humanos , Cuidadores/psicologia , Família/psicologia , Pesquisa Qualitativa
16.
Qual Health Res ; : 10497323241236308, 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38594823

RESUMO

Family caregivers provide the majority of long-term care and support of older adults as they age or approach the end of life. Studies often refer to family caregivers as invisible because the American healthcare system, public policy, and society do not support or recognize their work. Family caregivers who provide care to older adults who live in rural areas face unique challenges due to the rural environment. The purpose of this study was to inductively develop a theoretical framework that explains the process of family caregiving to older adults who live at home in rural areas and require daily assistance while exploring their experiences regarding access, utilization, challenges, and effectiveness of patient healthcare services and caregiver resources in rural areas. The grounded theory method of Strauss and Corbin was used for sampling, data collection, and data analysis. Fifteen family caregivers who oversaw and/or provided care on a daily basis to an older adult living in two rural counties of New York State participated in the study. Data were collected through two semi-structured interviews with each participant, yielding 30 interviews. Findings revealed that family caregivers engaged in the process of orchestrating care by growing into caregiving, integrating technology, and utilizing networks when providing and managing caregiving. Understanding caregiving from the perspective of family caregivers engaged in the process can inform healthcare practice, healthcare education, and public policy and can support better outcomes for both older adults and their family caregivers.

17.
Nurs Ethics ; : 9697330241241773, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38587469

RESUMO

BACKGROUND: Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. AIM: This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. RESEARCH DESIGN AND PARTICIPANTS: This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer's philosophical hermeneutics. ETHICAL CONSIDERATIONS: Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. RESULTS: The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. CONCLUSION AND FINAL CONSIDERATIONS: The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices.

18.
J Gerontol Soc Work ; : 1-16, 2024 Mar 10.
Artigo em Inglês | MEDLINE | ID: mdl-38461440

RESUMO

Chinese family caregivers of people with dementia (PWD) can suffer from physical and psychological burden. This study aimed to examine the effects of logotherapy-based interventions on Chinese family caregivers of older adults with dementia to decrease caregiver burden. This mixed-methods study used a pre-experimental design with pre-posttests and semi-structured interviews. A purposive sample of 13 family caregivers from a suburban district in Shanghai was enrolled with (1) caregiver burden and (2) access and capability to use smart devices. Participants received eight online group logotherapy sessions with a focus on hope and meaning construction. Participants completed the Zarit Burden Interview, a 22-item measure of caregiver burden, before and after the intervention, and a 30-min semi-structured interview post-intervention. From the quantitative data, dementia caregivers reported severe caregiving burdens at the baseline (M = 54.77, SD = 9.33). Caregiver burden significantly decreased after the logotherapy-based intervention (M = 52.15, SD = 8.80, p < .001). Two themes pertaining to participants' experiences in intervention emerged from the qualitative data: (1) improved attitudes toward suffering, and (2) enhanced sense of meaning in life and hope. The cultural relevance of logotherapy to Chinese familism and Confucianism may further enhance its feasibility in the Chinese context.

19.
Healthcare (Basel) ; 12(5)2024 Feb 22.
Artigo em Inglês | MEDLINE | ID: mdl-38470633

RESUMO

The COVID-19 pandemic underscored the imperative for meaningful family involvement in long-term care, aligning with policy and safety standards while enhancing outcomes for caregivers, residents, and staff. The objectives of this article are as follows: (1) a case study report on implementing a family involvement intervention designed to facilitate the formal and safe engagement of family caregivers in resident care and (2) the pilot evaluation of the intervention. We used Knapp's six-step implementation science model to guide and describe intervention development to provide insight for others planning family involvement projects. We employed sequential mixed methods, including surveys with quantitative and qualitative questions before and after program implementation for providers, and surveys and interviews with family caregivers a year after. We used the Mann-Whitney U test (p < 0.05) to assess differences in health providers' perceptions pre- and post-education. Families and staff perceived that the Family Involvement Program was important for improving the quality of care, residents' quality of life and family/staff relationships. Providers' perceptions of the program's positive impact on residents' quality of life (p = 0.020) and quality of care (p = 0.010), along with their satisfaction with working relationships with families (p = 0.039), improved significantly after the program. Qualitative data confirmed improvements in family-staff relationships. In conclusion, we documented the design of this family involvement initiative to encourage family caregivers and staff to work together in residents' care. Youville's Family Involvement Program gives families and family caregivers an explicit role as partners in long-term care. The mixed methods pilot evaluation documented improvements in staff and family relationships.

20.
West J Nurs Res ; 46(5): 374-380, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38500354

RESUMO

BACKGROUND: Disclosure of family caregiving to work supervisors is needed for nurses to access work support for family caregiving. Little is known about characteristics of nurses who decide to/not to disclose family caregiving to supervisors. OBJECTIVE: The objective was to examine characteristics of nurses based on whether they disclosed caregiving responsibilities to their nursing supervisors and describe reasons for non-disclosure. METHODS: This was a secondary analysis of a cross-sectional survey. Registered nurses who had a work supervisor and cared for an older adult family member completed a survey including demographics, work and caregiving characteristics, and disclosure. Descriptive statistics and binary logistic regression were conducted. RESULTS: The sample included 162 nurses. Participants were on average 50 years old, 90.1% female, 65.4% married, and 80.9% were caring for a parent or parent-in-law. The disclosure was more likely among nurses who provided higher intensity care (hours of care), cared for a parent or in-law, or had a quality caregiver-care recipient relationship. Reasons for non-disclosure included wanting to separate personal and work life, discomfort, and fear of consequences. CONCLUSIONS: Nurses struggle with similar disclosure challenges as other family caregivers. Care intensity, caregiver-care recipient relationships, and care stress were associated with disclosure behaviors.


Assuntos
Família , Pais , Humanos , Feminino , Idoso , Pessoa de Meia-Idade , Masculino , Estudos Transversais , Cuidadores , Inquéritos e Questionários
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