Experiences Of Spousal Caregivers Research Articles

The Invisible Frontline: Experiences of Spousal Caregivers During COVID-19.

Spousal caregivers are a largely invisible population of unpaid long-term care providers in the United States. This paper examines their experiences during the COVID-19 pandemic by drawing on data from 96 virtual and phone interviews with 44 spousal caregivers cohabitating with an ill partner across 22 states between June and December 2020. Findings show caregivers 1) adjusted care practices related to food and supply deliveries, socializing online, and infection control; 2) experienced impacts on care, including the loss of home health aides and reduced outpatient care; and 3) experienced emotional distress due to isolation, increased care demands, and resulting heightened anxiety and stress. These findings indicate specific types of ongoing resources caregivers may continue to need as the pandemic wanes, such as access to online support, a more robust infrastructure for food delivery, and planning for an increased projected shortage of home health aides.

노인 가족요양보호사의 배우자 돌봄 경험

This study was conducted to explore spousal caregiving experiences among elderly family care workers in depth. To achieve this, seven elderly family care workers who were taking care of their spouses were selected as study participants through purposive and snowball sampling methods. Data were collected in an average of two or more interviews, and spousal caregiving experiences were analyzed for content and meaning using Giorgi (1985)’s phenomenological qualitative method. The results showed 219 meaning units, 58 focal meanings, and 16 emerging themes, and we identified 4 essential themes by reviewing their correlations. The themes were divided into the following categories: ‘It is my spouse, whether you hate it or love it,’ ‘A tunnel with no end in sight for caregiving,’ ‘Challenges and achievements as an elderly family care worker,’ and ‘A journey of spousal caregiving, which becomes more mature as I embrace myself as an elderly family care worker,’ The central theme was ‘Tending to my spouse with my own hands at home while the twilight fades,’ Based on these results, this study suggests that elderly family care workers need institutional, financial, and emotional support to ensure they can provide spousal caregiving in a stable manner at the clinical and policy levels of social welfare.

EAST MEETS WEST: IMPROVING HEALTH AND LONG-TERM CARE FOR OLDER ADULTS IN THE U.S. AND CHINA

As the number of older adults in the U.S. and China continues to increase, promoting healthy aging is essential for individuals, family, and society. Both countries face many similar issues due to their aging populations, including prolonging healthy life expectancy and providing quality of care. However, the change in demographics brings with it unique challenges for both the U.S and China. This forum invites scholars and researchers from these two countries to share their knowledge and insights on promoting healthy aging and improving care for older adults. This forum includes five presentations and one-panel discussion. Two presentations will focus on long-term care (LTC) in China, one is to forecast the needs of LTC in the next five decades, and the other is to evaluate the current LTC needs and discuss LTC policy. Using the data from the Health and Retirement Study, the third presentation aims to re-conceptualize spousal caregiving as a dyad-level phenomenon and provides a dynamic view of the spousal caregiving experiences. The last two presentations will focus on promoting healthy aging through clinical interventions. The fourth one is to evaluate the effectiveness of adaptive computer-based cognitive training among community-dwelling older adults in China. The last presentation provides some examples of using pragmatic clinical trials to improve the care of older adults in skilled nursing facilities in the U.S. After the five presentations, the three panelists will provide feedback to the presentations and share their views on healthy aging with the audience.

DOES CAREGIVING MATTER? THE RELATIONSHIPS BETWEEN CAREGIVING EXPERIENCE AND ADVANCE CARE PLANNING IN OLD AGE

Advanced care planning (ACP) is encouraged as the completion of ACP increases the likelihood for patients to receive their preferable end-of-life care and for caregivers to be less stressed. Common approaches to increase the engagement of ACP target on intervention or information provision to patients in the very late stage of life. Arguing that caregiving experience may influence how people plan their own end-of-life care, the present study focuses on caregiving roles. Using seven waves of data (2002, 2004, 2006, 2008, 2010, 2012, and 2014) from the Health and Retirement Study (HRS), 863 older people who were 65+ and alive in 2012 but passed away prior to 2014 were included in this study to examine the relationships between an individual’s caregiving experience (2002-2012) and his/her completion of ACP (2014). Findings from logistic regression showed that caregiving experience did not influence older adults’ (65+) ACP completion in 2014. When considering different types of caregiving experience (none, spousal, parental) among older cohort (75+), the odds of completing ACP for those with spousal caregiving experience were 2.47 times more likely than those without any caregiving experience. However, no relationship was detected among those with parental caregiving experience. Other factors relating to ACP completion were poorer health, death being expected, death due to cancer, older age and being racial minorities. Practitioners and policymakers could consider encouraging older adults (65+) who provide spousal care to engage in ACP. Future research taking longitudinal approaches to identify reasons behind the existence of the relationship is urged.

RE-CONCEPTUALIZING SPOUSAL CAREGIVING FROM A DYADIC PERSPECTIVE IN THE U.S.

Existing literature on later-life spousal caregiving tends to focus on one member of the marital dyads, assuming a priori distinction between the caregiver and care-receiver. Theoretically and empirically, this individualistic role-related (caregiver-receiver) approach is inaccurate, as the concept of spousal care intrinsically involves two people within a marital dyad. Therefore, this paper used a social exchange perspective to re-conceptualize spousal caregiving as a dyad-level phenomenon. Using the 2014 wave of the Health and Retirement Study, 6,500 individuals (3,250 couples) aged 65 and above and their spouse were selected. Based on each partner’s need for care, receipt of spousal care, and provision of spousal care, the study identified five distinctive caregiving typologies. Household-level factors such as the availability of other types of informal care were associated with these typologies. This paper offers a broader and more dynamic perspective of the spousal caregiving experiences.

Experiences of Spousal Caregivers of Persons with Dementia in Elderly Couple Households

Experiences of Spousal Caregivers of Persons with Dementia in Elderly Couple Households

Finding positives in caregiving: The unique experiences of Chinese spousal caregivers of persons with young-onset dementia.

The experience of taking care of spouses with young-onset dementia has been identified as unique and merits considerations. However, current knowledge about this area in Chinese spousal caregivers is scarce. A qualitative descriptive study was therefore conducted to explore the experience of spousal caregivers of persons with young-onset dementia in Hong Kong. A total of six spousal caregivers of persons diagnosed with dementia before the age of 65 participated in this study. Three major categories were identified: coming to terms with an unexpected diagnosis; multiple unanticipated and ‘early’ losses and finding positives and meaning. This study has highlighted the influence of sociocultural values on the spousal caregiving experience in young-onset dementia caregiving. The findings also have significant implications for the development of interventions to facilitate the spousal caregivers to accept and sustain their caregiving role.

People with Alzheimer's disease and their spouse-caregivers: differences in perceptions of sexual satisfaction?

Older informal caregivers aged 65+ years account for 34% of all carers in the USA (Family Caregivers Alliance, 2016), 22% in England and Wales (Carers UK, 2015), and 24% in Australia (Deloitte Access Economics, 2015). For many older carers, this means looking after their spouse or intimate partner who in many cases has dementia (Donnellan et al., 2015). As the incidence of dementia increases, the need to understand the impact of caring on these intimate relationships becomes more vital, so the experiences of spousal caregivers can be anticipated, validated, and supported. It is also important to understand the gender differences in these care relationships, so that education and services can be tailored to meet the different needs of men and women caregivers. Sexual activity in later life is associated with both mental and physical health (Ganong and Larson, 2011; Anderson, 2013), and is therefore, important to maintain, perhaps even in the context of caring for someone with dementia.

Spouses’ experience of living with a partner diagnosed with a dementia: a synthesis of the qualitative research

The majority of people diagnosed with a dementia live at home with the support of their spouse. While this situation has advantages, it brings many challenges for the spouse, particularly dealing with the emotional impact of the behavioral changes associated with the dementia. A growing body of qualitative research has focused on understanding the spousal caregiver perspective of living with a partner diagnosed with dementia. The aim of this study was to complete a synthesis of the results of published qualitative studies that have explored the spousal experience. An electronic database search of Ovid Medline, CINAHL, EMBASE, and PsychINFO from January 1980 to September 2014 was conducted. Sixteen studies met the inclusion criteria. Verbatim quotes of the participant interview data derived from these studies were collated and a thematic analysis was conducted. Synthesis of the published data revealed five major themes. The theme of "loss of partner" was central, and around this central experience spouses described various processes: acknowledging change, being in crisis, adapting and adjusting, accepting and moving forward. These findings provide insights into the day-to-day adjustments and experiences of spousal caregivers whilst highlighting the importance of considering the impact of cognitive decline and dementia in a social-relational context.

Caregivers’ Experiences Derived from Everyday Occupations

ABSTRACTAims: The stress of caring for others can put caregivers’ health at risk, yet existing occupational therapy interventions largely focus on providing direct care. Capturing caregivers’ daily lived experiences may yield insights enabling occupational therapists (OTs) to better meet a broader scope of their needs. This phenomenological study aimed to uncover the daily occupations and experiences of spousal caregivers (n = 6). Methods: Data were collected over 4 months using a time-use diary (the Daily Experiences of Pleasure, Productivity, and Restoration Profile), individual interviews, and a focus group. Results: Inductive content analysis resulted in three themes: caregivers felt conflicted by experiences of pleasure and restoration outside of caregiving, occupational experiences revealed changes in daily patterns of life, and past occupational experiences influenced perceptions of caregiving. Conclusion: These findings emphasize the need for OTs to expand their roles with caregivers, supporting their ability to provide care and maintain their health and well-being.

Caring for a spouse with end-stage heart failure through implantation of a left ventricular assist device as destination therapy

ObjectivesThis qualitative study describes the experiences of spousal caregivers of a patient with end-stage heart failure (HF) from pre-LVAD to post-LVAD-DT implantation. BackgroundLVAD-DTs are implanted as permanent devices for end-stage HF patients with the goal of improving the length and quality of life. LVADs create new demands for both patients and caregivers. MethodsIn-depth, semi-structured interviews of 10 spousal caregivers were thematically analyzed. ResultsThroughout the process of caregiving, pre-implant through post-implant, all caregivers discussed their ability to adapt within the role as a caregiver. Adaptation as a caregiver occurred through three distinct time frames following the progression of the patient's HF and subsequent LVAD implantation: caring for a spouse with HF, decision for LVAD implantation made, and caring for a spouse with the LVAD-DT. ConclusionsCaregivers were able to adapt and develop effective strategies to incorporate the demands of caring for a spouse with an LVAD-DT, but the role remained challenging. The findings underscore the need for continued research that may be translated into effective interventions to support patient and caregivers as they live through this end-of-life trajectory.

Spouses' experience of caregiving for cancer patients: a literature review

The spouse is generally the primary informal caregiver for cancer patients. Many studies have explored the experience of caregiving for cancer patients, but it is unclear whether there are gender differences in the spousal caring experience for cancer patients. This review describes the recent published research on the stress process of spousal caregiving experience for cancer patients, and aims to identify any gender differences in the caregiving experience. Electronic, manual and author's searches were conducted. Articles included were published in English and Chinese, from January 2000 to March 2012. Study population is couples coping with cancer. Focus is on caregiving experience for spouse with cancer, and findings include both male and female spousal caregivers in quantitative studies. The databases searched included MEDLINE, CINAHL, Science Citation Index Expanded, Scopus, PsycINFO and the China Academic Journal Full-text Database. The key search terms used were 'cancer' or 'oncology' or 'carcinoma' AND 'caregiver' or 'caregiving' or 'carer' AND 'gender differences' or 'gender' AND 'spouse' or 'couple' or 'partner'. Spousal caregiving experiences of cancer patients were explored by adopting the 'stress process' of the Cancer Family Caregiving Experience Model from the gender perspective. Twenty-five articles were identified and included in this review. It was revealed that female spousal caregivers perceived higher level negative experience in caregiving, such as lower mental health, lower physical health, poorer health-related quality of life, lower life satisfaction and decreased marital satisfaction than male spousal caregivers. However, female spousal caregivers are more likely to experience personal growth than male spousal caregivers. This review identified that female spousal caregivers for cancer patients had higher levels of negative experience in caregiving. A better understanding of the spousal caregiving experience will provide healthcare professionals with the information needed to develop interventions to support and prepare spousal caregivers to care for their loved ones with cancer.

A comparative qualitative analysis of stories of spousal caregivers of people with dementia: Negative, ambivalent, and positive experiences

BackgroundCaregivers of people with dementia describe a wide spectrum of caregiving experiences, from very negative to very positive. Previous research reveals that differences exist, but how or why the experiences differ has not been well addressed. ObjectiveThe purpose of this study was to explore how the experiences of spousal caregivers of people with dementia differ. MethodsThis study was a secondary analysis of interviews collected from a longitudinal caregiver skill training intervention for caregivers of those with degenerative diseases (parent study). For the purpose of this analysis, 57 interviews from 21 spousal caregivers of people with dementia in the control group of the parent study were analyzed. The interviews from the parent study were collected at baseline, 6months, and 12months post-enrollment. ResultsThree groups of caregivers were identified based on how they described their experience; a negative group, an ambivalent group and a positive group. The negative group described both past and present relationships with their spouse in negative terms. These caregivers expressed no positives in caregiving. Their focus was on their own unmet needs rather than their spouses’ needs. These caregivers reported significant caregiving burden. The ambivalent group reported that the relationship they had with the spouse was lost, but they still described satisfaction in being able to care for the spouse. They described mixed emotions about caregiving and had difficulty accepting that their partners could no longer reciprocate in the relationship. The positive group described both their past and present relationship with the care recipient in loving terms. They focused on aspects of the relationship they still had, rather than what had been lost. They expressed satisfaction with caregiving, were other-focused, and not highly burdened by caregiving. They understood that their partner could not reciprocate, and expected nothing in return. Descriptions of the positive group suggest target areas for caregiver interventions. ConclusionSpousal caregivers of people with dementia can be encouraged toward more positive caregiving experiences through empathy-building interventions and enhanced understanding and acceptance of changes in the care recipient.

Understanding Experiences of Spousal Caregivers with Health as Expanding Consciousness

The purpose of this study was to recognize a unitary pattern within the lives of spousal caregivers following their spouses' discharge from the hospital after coronary artery bypass graft surgery. The unitary pattern emerged through four themes: dyadic relationship life patterns influenced caregivers' roles and responsibilities, life patterns of caring for self and others were altered, life patterns of certainty and knowing were limiting, awareness of life pattern gave meaning, and new perception on life left to live. The study added empirical support to the theory of health as expanding consciousness and provided a new way to examine the spousal caregiving experience.

Care Transition Experiences of Spousal Caregivers

The purpose of this study was to develop a theoretical framework about caregivers' experiences and the processes in which they engaged during their spouses' transition from a geriatric rehabilitation unit to home. We used a constructivist grounded theory methodology approach. Forty-five interviews were conducted across three points in time with 18 older adult spousal caregivers. A theoretical framework was developed within which reconciling in response to fluctuating needs emerged as the basic social process. Reconciling included three subprocesses (i.e., navigating, safekeeping, and repositioning), and highlighted how caregivers responded to the fluctuating needs of their spouse, to their own needs, and to those of the marital dyad. Reconciling was situated within a context shaped by a trajectory of prior care transitions and intertwined life events experienced by caregivers. Findings serve as a resource for scientists, rehabilitation clinicians, educators, and decision makers toward improving transitional care for spousal caregivers.

How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care?

Objectives:To examine the experiences of spousal care givers of Alzheimer patients to disclosure of dementia diagnosis and subsequent care.Methods:A random sample of 1943 spousal care givers of people receiving medication...

Spousal Caregiving for Stroke Survivors

Caregiving for a spouse who has survived a stroke has multidimensional implications for both the partner and the spousal caregiver. A phenomenological study was conducted to examine the experiences of spousal caregivers for stroke survivors. Eight spouses who met the inclusion criteria participated in the study. van Manen's (1997) approach was used to examine the spousal caregivers' experiences. Data were collected through audiotapes from semistructured interviews. The interviews were transcribed to form textual descriptions of the caregivers' experiences. Six interrelated themes emerged through data analysis: experiencing a profound sense of loss, adjusting to a new relationship with a spouse, taking on new responsibilities, feeling the demands of caregiving, having to depend on the support of others, and maintaining hope and optimism. This study contributes to healthcare providers' understanding and knowledge of spousal caregivers for stroke survivors, and supports the need for continued research in this area.