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BACKGROUND: Sleep difficulty in caregivers is associated with poor physical and psychological outcomes. The purpose of this study was to describe family caregivers' perception of sleep difficulty through the hospice trajectory after a cancer diagnosis as predicted by age, sex, self-report of anxiety or depression, and cohabitation. METHODS: We conducted a secondary analysis of longitudinal data using multilevel modeling with nested model comparisons. Beginning with an unconditional growth model, predictors were added to nested models to test differential impact. RESULTS: Caregivers (n = 164) were predominately white (n = 160; 97%) and female (n = 113, 69%). We hypothesized that age, sex, history of anxiety or depression, and cohabitation would predict sleep difficulty. The cohabitation predictor model was a statistically significant model for caregiver perception of sleep difficulty that worsened throughout hospice caregiving (b = .184, χ2 = 7.199, P = 0.027) but age, sex, and history of depression or anxiety did not improve model fit. CONCLUSION: Our findings indicate that family caregivers who cohabitate exhibit increased perception of sleep difficulty over the course of hospice. Future studies and interventions for hospice family caregivers' sleep should consider cohabitation between the patient and the caregiver as a significant predictor of sleep difficulty to observe and potentially mediate the negative outcomes associated with caregiver sleep difficulty. Further, determining the underlying reasons for sleep difficulty in cohabitation (e.g., patient symptoms or treatments) should be explored.
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INTRODUCTION: Few studies have focused on developing theories to explain caregiving as performed by grandparents who provide care for their grandchildren in any setting. Theory development that is grounded in the experiences and cultural context of those being studied is needed to inform research, subsequent care, and overall well-being, especially of populations that are understudied. METHODS: This manuscript was informed by Constructivist Grounded Theory, semi-structured in-depth and individual interviews. Also, three methodological phases were followed: (a) concurrent data collection and analysis procedures, (b) developing categories and relationships among them, and (c) defining the core category and building the substantive theory. RESULTS: The methodological steps involved in generating a substantive theory, the GRAndparent-CarEgiving (GRACE) model, are reported. DISCUSSION: Research, and subsequently the well-being and health care of grandparent-caregivers, needs to be informed by culturally congruent theories that are founded in the experiences and cultural context of the individuals being investigated.
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More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003-2023) including older adults' and caregivers' data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.
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Cuidadores , Humanos , Cuidadores/psicología , Anciano , Estados Unidos , Recolección de Datos/métodos , Encuestas y Cuestionarios , Envejecimiento , Familia/psicologíaRESUMEN
BACKGROUND: Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. METHODS: This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). RESULTS: Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non-White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. CONCLUSIONS: Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF-factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.
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Demencia , Casas de Salud , Cuidado Terminal , Humanos , Masculino , Femenino , Casas de Salud/estadística & datos numéricos , Demencia/mortalidad , Estudios Retrospectivos , Anciano de 80 o más Años , Anciano , Utah/epidemiología , Cuidado Terminal/estadística & datos numéricos , Familia , Hogares para Ancianos/estadística & datos numéricos , Estados Unidos/epidemiologíaRESUMEN
PURPOSE: The purpose of this study was to understand the lived experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions and/or disabilities. Family caregiver research is typically siloed by health condition or by caregiving relationship, leaving gaps in understanding similarities and differences among caregivers. METHODS: We hosted three virtual focus groups with diverse family caregivers (n = 26) caring for an individual with a long-term disability and/or health condition(s). We conducted a qualitative thematic analysis using an iterative, inductive process. RESULTS: Participants primarily expressed shared experiences, despite having unique caregiving situations. We identified themes among a) caregiver experiences: Trying to Do It All, Balancing Complex Emotions, Managing Expectations, and Adjusting to Changes Over Time and b) caregiver needs: Longing for Breaks and Self-Care; Lacking Help, Support and Resources; and Desiring Understanding and Recognition. CONCLUSIONS: These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship and are applicable to clinicians, researchers, and policy makers. The evidence of shared caregiver experiences can guide efficiencies in policy and practice (e.g., pooling of existing resources, expansion of interventions) to meet the needs of a broader population of caregivers.
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Cuidadores , Longevidad , Humanos , Cuidadores/psicología , Familia/psicología , Emociones , Autocuidado , Investigación CualitativaRESUMEN
Global drivers of health, such as poverty, climate change, and public health crises, pose significant impact on many vulnerable groups, such as grandmother-caregivers (GMCs). Engaging community partners in this problem could help in understanding salient issues and devising solutions to alleviate the challenges faced by GMCs. The purpose of the current study was to engage community members in rural Uganda in identifying challenges experienced by GMCs and explore the potential for a sustainable livelihood for this population. We used a community-engaged ethnographic methodology for our qualitative study, which was informed by the Sustainable Livelihood Framework. Themes emerged in two domains: GMC Challenges and Potential for Sustainable Livelihoods and Intervention Recommendations. The challenges experienced by GMCs are multifaceted as are the potential solutions. Our findings have the potential to inform community development interventions that support the livelihoods and well-being of GMCs in Uganda and similar settings. [Research in Gerontological Nursing, 17(1), 43-52.].
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Abuelos , Humanos , Cuidadores , Uganda , Pobreza , Relaciones IntergeneracionalesRESUMEN
Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.
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Cuidadores , Cuidados Paliativos , Humanos , Cuidadores/psicología , Masculino , Femenino , Persona de Mediana Edad , Adulto , AncianoRESUMEN
BACKGROUND AND OBJECTIVES: LGBTQ+ people are more likely to be caregivers for family and friends with life-limiting illnesses than non-LGBTQ+ people. LGBTQ+ caregivers may also experience stigma, bias, and discrimination, in addition to caregiving stress. Yet few studies have elicited LGBTQ+ family caregivers' perspectives on their end-of-life (EOL) experiences of home hospice. RESEARCH DESIGN AND METHODS: We conducted semi-structured interviews with LGBTQ+ family caregivers of home hospice patients (N = 20). Following an interpretive descriptive approach, interview data were audio recorded, transcribed, and iteratively coded, and themes were developed and synthesized. RESULTS: The burden of having to wonder expressed caregivers' uncertainty and concern about whether their negative experiences were common to all EOL caregivers or stemmed from cultural stigma and provider bias. Participants described how invisibility vs. risks of disclosure, anticipatory anxiety, perceived microaggressions, and protective vigilance increased stress and complicated caregiver-provider communication. Navigating EOL universalities vs. minority realities depicted underlying tensions between commonly assumed universalities of EOL caregiving and LGBTQ+-specific experiences. Providers' discomfort, awkward communication, lack of access to culturally competent EOL support resources, and broader structural and cultural discrimination eroded their sense of connectedness and safety. Together, these themes characterized the impact of minority stress at EOL. DISCUSSION AND IMPLICATIONS: Our findings suggest that LGBTQ+ hospice caregivers are at risk for minority stress in addition to more common sources of EOL caregiving pressures and thus have specific support and communication needs. Providers must understand this to deliver effective EOL care for all families.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Neoplasias , Cuidado Terminal , Humanos , CuidadoresRESUMEN
Background: Little is known about nursing home (NH) residents' family characteristics despite the important role families play at end-of-life (EOL). Objective: To describe the size and composition of first-degree families (FDFs) of Utah NH residents who died 1998-2016 (n = 43,405). Methods: Using the Utah Population Caregiving Database, we linked NH decedents to their FDF (n = 124,419; spouses = 10.8%; children = 55.3%; siblings = 32.3%) and compared sociodemographic and death characteristics of those with and without FDF members (n = 9424). Results: Compared to NH decedents with FDF (78.3%), those without (21.7%) were more likely to be female (64.7% vs. 57.1%), non-White/Hispanic (11.2% vs. 4.2%), less educated (<9th grade; 41.1% vs. 32.4%), and die in a rural/frontier NH (25.3% vs. 24.0%, all p < 0.001). Despite similar levels of disease burden (Charlson Comorbidity score 3 + 37.7% vs. 38.0%), those without FDF were more likely to die from cancer (14.2% vs. 12.4%), Chronic Obstructive Pulmonary Disease (COPD) (6.0% vs. 4.0%), and dementia (17.1% vs. 16.6%, all p < 0.001), and were less likely to have 2+ hospitalizations at EOL (20.5% vs. 22.4%, p < 0.001). Conclusions: Among NH decedents, those with and without FDF have different sociodemographic and death characteristics-factors that may impact care at EOL. Understanding the nature of FDF relationship type on NH resident EOL care trajectories and outcomes is an important next step in clarifying the role of families of persons living and dying in NHs.
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Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs.
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Carcinoma Hepatocelular , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Neoplasias Hepáticas , Humanos , Cuidadores , Incertidumbre , Estudios Prospectivos , Estudios RetrospectivosRESUMEN
To better understand determinants and potential disparities in end of life, we model decedents' place of death with explanatory variables describing familial, social, and economic resources. A retrospective cohort of 204,041 decedents and their family members are drawn from the Utah Population Database family caregiving dataset. Using multinomial regression, we model place of death, categorized as at home, in a hospital, in another location, or unknown. The model includes family relationship variables, sex, race and ethnicity, and a socioeconomic status score, with control variables for age at death and death year. We identified the effect of a family network of multiple caregivers, with 3+ daughters decreasing odds of a hospital death by 17 percent (OR: 0.83 [0.79, 0.87], p < 0.001). Place of death also varies significantly by race and ethnicity, with most nonwhite groups more likely to die in a hospital. These determinants may contribute to disparities in end of life.
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OBJECTIVES: To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving. SAMPLE & SETTING: Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis. METHODS & VARIABLES: Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions. RESULTS: Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age. IMPLICATIONS FOR NURSING: Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources.
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Hospitales para Enfermos Terminales , Neoplasias , Femenino , Humanos , Cuidadores , Carga del Cuidador , Estudios Longitudinales , Lugar de TrabajoRESUMEN
OBJECTIVE: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. METHODS: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs. RESULTS: Dyads (N = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%). CONCLUSION: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving. INNOVATION: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures.
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Homelessness and caregiver insecurity are barriers to accessing hospice for end-of-life care. Some communities have implemented a community-based social model of hospice care, and reports of its characteristics and outcomes are growing in hospice and homeless literature. This case report explored the experiences of social model hospice recipients using photovoice, a community-based participatory method to photograph meaningful aspects of care. Participants (n = 3) took photos (n = 93), journaled, and participated in semistructured interviews as co-analyzers. Through deductive codes from the literature and inductive analysis of data, 6 themes were identified: having a physical location to receive care, involving the community, having spiritual needs attended to, acknowledging family/family of choice, connecting with animals, and feeling cared for. Participants offered few suggestions to improve care. Social model hospice provided a location for care, funding, and social support to address housing and caregiver insecurity. Results corroborated the social model hospice concept (antecedents, attributes, consequences). Findings add to the growing literature with implications for communities and leaders looking to start or improve care. Results suggest that photovoice may be a feasible method for eliciting firsthand experiences of residents. Findings may guide discussions about patient-reported aspects of care for a more accurate understanding of meaningful social model hospice care.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Personas con Mala Vivienda , Cuidado Terminal , Humanos , Animales , Participación de la ComunidadRESUMEN
Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care.
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Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Neoplasias , Masculino , Humanos , Femenino , Salud Mental , Cuidadores/psicología , Cuidados Paliativos al Final de la Vida/psicología , Actividades Cotidianas , Autocuidado , Apoyo Social , Neoplasias/terapia , Neoplasias/psicologíaRESUMEN
Interventions that actively engage dementia caregivers show promise in reducing the negative outcomes of caregiving but lack optimization and systematic testing. The purpose of this manuscript is to describe an iterative process developed to refine an intervention to enhance active engagement. A three-stage review process with content experts was developed to refine activities in preparation for focus group feedback and pilot testing. We identified caregiving vignettes, reorganized engagement techniques, and optimized focus group activities for online delivery to promote caregiver access and safety. The framework developed from this process is included, along with a template to guide intervention refinement.
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Certified nursing assistants (CNAs) provide 80% of direct care in long-term care settings and are critical to maintaining resident well-being. Arts-based approaches to enhancing meaningful engagement have the potential to empower CNA ownership in the process of improving patient-centered care. We held a series of focus groups with CNAs (n = 14) to adapt arts-based creative caregiving (CCG) techniques for use in long-term care. Iterative revisions focused on CCG techniques, factors influencing implementation, and usability. The Knowledgeable Nursing Assistants as Creative Caregivers (KNACC) manual developed from the adapted CCG describes training guidelines and instructions to facilitate CNA use of creative caregiving techniques in direct care.
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Cuidadores , Asistentes de Enfermería , Humanos , Cuidados a Largo Plazo/métodos , Grupos Focales , Asistentes de Enfermería/educación , Atención Dirigida al PacienteRESUMEN
Knowledgeable Nursing Assistants as Creative Caregivers (KNACC) was developed to train certified nursing assistants (CNAs) to apply arts-based techniques to enhance care and support to older adults in long-term care (LTC) settings. We piloted (n=8) KNACC techniques for use in LTC and assessed its potential for influence on the CNA outcomes of structural empowerment and job satisfaction. During preliminary implementation, CNAs working in memory care units were more open to applying all techniques. The techniques in KNACC have the potential to improve CNA skills in working with long-term care residents.
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Asistentes de Enfermería , Casas de Salud , Humanos , Anciano , Cuidadores , Cuidados a Largo Plazo/métodos , Satisfacción en el Trabajo , Asistentes de Enfermería/educaciónRESUMEN
Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of perceived support. Our goal was to (1) describe change in cancer home hospice caregivers' social support over time during care and into bereavement and (2) explore the impact of perceived stress and support from family and non-family members on caregivers' perceived general social support. We conducted a secondary analysis of longitudinal prospective questionnaire data. Forty caregivers completed measures of general perceived support, family and non-family support and stress during hospice enrollment and 2 and 6 months post the patient's death. Linear mixed models were used to determine change in support over time and the contribution of specific support/stress ratings to general support assessments. Caregivers overall had moderate and stable levels of social support over time, though there was significant variation between and within individuals. Family and non-family support and stress from family predicted general perceptions of social support, while no effects were found for non-family stress. This work suggests a need for more specific measures of support and stress, and the need for research to focus on improving baseline levels of caregiver perceived support.
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Hospitales para Enfermos Terminales , Neoplasias , Humanos , Cuidadores , Estudios Prospectivos , Apoyo Social , PercepciónRESUMEN
Background: Hospice family caregiving is often physically and emotionally taxing, but it is unclear how employment status impacts hospice caregiver burden and well-being. Objective(s): To examine the relationship between caregiver burden and well-being, and the moderating role of employment status (i.e., working, not working). Design, Setting/Subjects: This was a secondary data analysis of baseline data from a longitudinal observational study of family caregivers of home hospice cancer patients in the United States. Descriptive statistics, correlations, hierarchical linear regressions, and moderation analyses were used. Measurements: Baseline data included demographics, preparedness for caregiving, perceived burden, and well-being (i.e., global health, positive affect and well-being, anxiety, depression). Results: The majority of the 90 participants were White (86.7%), married (71.1%), and college educated (85.6%). The mean age was 58.27 ± 14.22, 53.3% cared for a spouse, and 56.6% worked full or part time. After controlling for demographics, and using employment status as a moderator, greater caregiver burden was significantly associated with lower global health (ß = -0.82 [-1.22 to -0.42], p < 0.001), positive affect and well-being scores (ß = -0.69 [-1.03 to -0.36], p < 0.001), and higher depression (ß = 0.24 [0.12-0.37], p < 0.001) and anxiety scores (ß = 0.22 [0.07-0.37], p < 0.005). Employment status significantly moderated the relationship between burden and global health (ß = 0.65 [0.22 to 1.08], p < 0.005), and burden and positive affect and well-being (ß = 0.45 [0.06 to 0.84], p < 0.05). At high levels of burden, workers had greater well-being than nonworkers. Conclusion(s): More burdened hospice caregivers may experience worse well-being, especially among nonworking caregivers. Employment may be a protective factor for highly burdened hospice family caregivers.