Utility of the life course perspective in research with Mexican American caregivers of older adults

Research on caregiving of elders in Mexican American families is urgently needed. We know little about family caregivers, family transitions in relation to the caregiving role, reciprocal impact of caregivers and care recipients on one another, adaptive strategies, positive benefits of caregiving (caregiver gain), specific caregiving burdens, or supportive interventions for family caregiving. Theory derivation using the concepts and structure of life course perspective provides a way to fill the knowledge gaps concerning Mexican American caregiving families, taking into account their ethnic status as an important Hispanic subgroup and the unique cultural and contextual factors that mark their caregiving experiences.     

Cybersupport: empowering asthma caregivers

In the United States, an estimated 6.5 million children have asthma (Akinbami, 2005). Due to the chronic and unpredictable nature of asthma, the condition places excessive demands on the primary caregiver. The complexity of asthma management has required parents to take increased responsibility for the assessment and treatment of their child's asthma (Dickinson & Dignam, 2002). Many families are turning to the Internet for information and support. The purpose of this study was to gain insight into the "lived" experiences of an online asthma caregivers support group. Archived messages posted to an online discussion list were analyzed using phenomenological thematic analysis. Five themes emerged providing insight into the meaning of caregiving and the provision of social support. Online support narratives provide a unique way to gain insight and understanding of the experiences of mother's enacting the caregiver role. Understanding the everyday lives of asthma caregivers can help nurses and other health care providers better meet caregiver needs.     

Family carers of ICU survivors: a survey of the burden they experience

Intensive care unit (ICU) survivors may experience deterioration in their quality of life for months following their return home, with families assuming a caregiving role. The aim of this study was to measure the burden associated with caring for a family member who had been critically ill. The study also sought to describe the relationship between three factors (filial obligation, social support, self-efficacy) and caregiver burden. Seventy-one family carers, 51 females (72%) and 20 (28%) males of long-term intensive care patients completed a mailed survey, after signing an informed consent form. Although the vast majority of the caregivers were providing substantial number of hours of care each week, they scored lower than the midpoint on all caregiver burden inventory subscales. Filial obligation was found to be positively associated with caregiver burden; however, there was no association between social support, self-efficacy and caregiver burden. Male caregivers experienced significantly more burden than female caregivers. The findings suggest that an understanding of the factors that impact on caregiver burden of families of ICU survivors is only beginning to emerge.     

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients

Purpose

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies.

Methods

A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors.

Results

Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors.

Conclusions

Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.     

Impact of caregiving on Finnish family caregivers

Scand J Caring Sci; 2012; 26; 211–218 Impact of caregiving on Finnish family caregivers Background: Numerous studies have examined the caregiver burden that family caregivers often experience. However, caregiving situations may also include positive elements that have recently received greater research attention. Aim: The aim was to examine the positive value and negative impact of caregiving for the family caregiver. Method: Caregiving experience was measured with the modified 15‐item Carers of Older People in Europe Index. Surveys were completed by family caregivers at the baseline and after 6 months. Results: At the baseline, most family caregivers thought that caregiving was worthwhile, had a good relationship with the person they cared for and coped well as a caregiver. Fifty‐five per cent of the respondents did not feel trapped in their caregiver role, though a third did, and a majority found caregiving to be too demanding. Most perceived themselves to be supported by their family, while 40% did not feel supported by health and social services. During the 6‐month study period, the negative impact score declined, and the scores for positive value and quality of support improved. The care recipient’s management at home (p < 0.001) was the single best predictor of the negative impact on the family caregiver; the family caregiver’s older age (p < 0.01) best predicted the quality of support; and the family caregiver’s good relationship with the care recipient (p < 0.01) best predicted the positive value of caregiving. Conclusions: The study indicated that even if the health status of the care recipient dramatically worsened, the family caregiver’s experiences of caregiving became more positive. This is because family caregiving was perceived to be worthwhile, most family caregivers had a close relationship with the person they cared for and they received support from their family. Interventions that focus on family caregivers’ positive experiences of caregiving would be important in protecting them from the negative consequences of caregiving.     

End-of-life caregiving: what helps family caregivers cope?

Patient care needs and patient quality-of-life (QOL) deficits can be significant stressors for family caregivers. Often, greater caregiving demands and poorer patient QOL are associated with greater caregiver strain. However, caregiver coping behavior can attenuate the effect of caregiving stressors on caregiver strain. This study examined the relationships among caregiving stressors, coping, and caregiver strain in a sample of 31 family caregivers and their terminally ill loved ones enrolled in home hospice programs. Caregiving stressors included patient activity of daily living (ADL) needs and dimensions of patient QOL. Coping was measured with the Family Crisis Personal Evaluation Scale (F-COPES), which has five coping scales: acquiring social support, reframing, seeking spiritual support, passive appraisal, and mobilizing the family to acquire and accept help. Caregiver strain was significantly correlated with patient ADL needs (r = 0.51), patient psychological distress (r = 0.42), and patient existential QOL (r = -0.65). Regression equations indicated that reframing coping lessened caregiver strain. Caregivers who accepted their loved one's illness, redefined illness-related problems in a more manageable way, and felt capable of solving illness-related problems had less caregiver strain than caregivers who used less of a reframing coping style.     

Quality of Life for Family Caregivers of People with Chronic Health Problems

The trend toward community-based care, along with advances in medical technology, has resulted in increased numbers of individuals with complex healthcare needs being cared for at home by their families. This shift from hospital to community care places increased demands on family caregivers. Families are now providing long-term care for chronically ill people with a variety of conditions. Caregiver research has, for the most part, explored burden, stress, and depression as outcomes of caregiving. There is little research assessing the quality of life(QOL) of long-term caregivers. In the research on quality of life, the patient is most frequently the focus. With the increased demand on families as caregivers, quality of life needs to be included as a variable in studying family caregivers for chronically ill individuals. The purpose of this paper is to discuss issues in studying quality of life in family caregivers of persons with chronic conditions. Conceptualization of quality of life is explored, measurement of quality of life examined and the research on quality of life reviewed, with a focus on the quality of life of the family caregiver.     

Managing caregiver tasks among family caregivers of cancer patients in Hong Kong

Twenty-nine family caregivers of terminally ill cancer patients in Hong Kong were asked about their perceived difficulty in managing caregiver tasks. Results showed that the level of difficulty in handling the three main aspects of tasks, that is the direct care, intrapersonal tasks, and interpersonal ties, were similar (chi2 = 0.71, P > 0.05). The individual tasks identified as extremely difficult included compensation for personal time (31%), updating knowledge of reimbursement mechanism (20.7%), and emotionally accepting the likelihood of a progressive downward course of illness (17.2%). Mann-Whitney tests indicated that caregivers who had a shorter duration of caregiving experience perceived significantly greater difficulty in direct care (P < 0.05), intrapersonal tasks (P < 0.05), and overall tasks (P < 0.05). These findings indicate the need for the provision of counselling and educational support for these caregivers.     

A model of caregiving through the end of life: seeking normal

Informal family caregivers provide significant contributions to end-of-life (EOL) care. A theoretical model of the phases and transitions of EOL caregiving was explicated using grounded theory methods to explore the experiences of 46 family caregivers of adults suffering a variety of life-limiting conditions. The derived model describes four phases of caregiving spanning prediagnosis through bereavement. Phases are demarcated by key transitions experienced when the illness progression manifestly challenges the established "steady state" achieved by the caregiver. The basic social process was defined as "seeking normal" as caregivers sought reliable patterns of everyday life while meeting the demands of caregiving. Understanding the progression of EOL caregiving enables clinicians to better support family caregivers as both coproviders and corecipients of care.     

Family experience caring for terminally ill patients with cancer in Hong Kong

In this study, 24 family caregivers of terminally ill patients participated in in-depth interviews regarding their experiences of giving care. The data were analyzed using grounded theory qualitative method. Commitment emerged as the precondition of the caregiving process. The caregivers did not perceive the work of caring as a burden. Rather, they felt that despite any personal hardships, what they were doing was important to their loved ones and therefore meaningful to them as caregivers. The components of commitment can be described as relational commitment, the act of showing love, and determination. The process of caregiving includes four phases: 1) holding onto hope for a miracle, 2) taking care, 3) preparing for death, and 4) adjusting to another phase of life. A patient-caregiver relationship, Confucian concepts of yi (appropriateness or rightness), and filial duty are reflected in the process of caregiving. Consequences of the process include finding meaning in life and peace of heart and mind. The emotional aspect of the caregiving experience can be described as an intense emotional experience filled with feelings of hope and hopelessness, guilt, fear, and regret. As a result of the caregiving experience, most participants found they have had a change of worldviews and treasure their lives. Findings show a significant need for interventions at each phase of the caregiving process designed to provide effective and culturally sensitive support and affirmation to family members as they care for their loved ones with terminal illnesses.     

Factors associated with depressive distress among Taiwanese family caregivers of cancer patients at the end of life

Family caregivers in East Asian countries are known to have a strong sense of filial piety and a traditional caregiving ideology. They are generally presumed to be protected from psychological distress arising from caregiving. However, there is scant information regarding the impact of caregiving on Chinese/Taiwanese families. The purpose of this study was aimed at identifying those family caregivers of Taiwanese terminally ill cancer patients who are at risk of experiencing depressive distress from the following three categories of predisposing factors: 1) contextual factors; 2) stressors; and 3) appraisal of the caregiving situation.Of the 170 Taiwanese family caregivers of terminally ill cancer patients that participated in this survey, 129 (75.9%) were at an extraordinarily high risk of being distressed because of depressive symptoms (CES-D > 15). Results indicated that family caregivers were vulnerable to clinically depressive distress if they were the patient's spouse (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.19-7.01), or evaluated caregiving as imposing a greater negative impact on their own health (AOR: 1.27; 95% CI: 1.09-1.47). In contrast, if family caregivers felt very confident in their knowledge of how to take care of the patient at home (AOR: 0.35; 95% CI: 0.15-0.81), or were sufficiently aware of the patient's thoughts and feelings about disease experiences and symptoms (AOR: 0.47; 95% CI: 0.25-0.88), they were less likely to suffer from depressive distress.These finding have significant clinical implications when they are put into the context of Confucian cultures which place great emphasis on filial piety and familism. Interventions and policy should be developed to target spousal caregivers to enhance their confidence in caregiving and understanding of the patient's disease experiences. This will reduce the negative caregiving impact on the caregiver's health, which in turn may prevent the development of depressive distress among family caregivers.     

Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients

Many family caregivers are unprepared for the death of their loved one and may suffer from worse mental health as a result. We therefore sought to determine the factors that family caregivers believe are important to preparing for death and bereavement. Focus groups and ethnographic interviews were conducted with 33 family caregivers (bereaved or current) of terminally ill patients. The interviews were audiotaped, transcribed, and analyzed using the constant comparative method. Life experiences such as the duration of caregiving/illness, advance care planning, previous experiences with caregiving or death, and medical sophistication all impacted preparedness, or the degree to which a caregiver is ready for the death and bereavement. Regardless of life experiences, however, all caregivers reported medical, practical, psychosocial, and religious/spiritual uncertainty. Because uncertainty was multidimensional, caregivers often needed more than prognostic information in order to prepare. Communication was the primary mechanism used to manage uncertainty. Good communication included clear, reliable information, combined with relationship-centered care from health care providers. Finally, preparedness had cognitive, affective, and behavioral dimensions. To prepare, some caregivers needed information tailored to their uncertainty (cognitive), others needed to "mentally" or "emotionally" prepare (affective), and still others had important tasks to complete (behavioral). In order to better prepare family caregivers for the death of a loved one, health care providers must develop a trusting relationship with caregivers, provide them with reliable information tailored to their uncertainty, and allow time for caregivers to process the information and complete important tasks.     

Experiences and challenges of informal caregiving for Korean immigrants

Title.  Experiences and challenges of informal caregiving for Korean immigrants.
Aim.  This paper is a report of a study designed to explore the caregiving experiences of Korean Americans.
Background.  Increasing numbers of older people in the Asian population place important long-term care demands on Asian caregivers, yet minimal attention has been given to the issue of caregiving in this group. The current study attempts to fill the gap by describing Korean American caregivers' unique caregiving experiences from their perspectives.
Method.  A qualitative research design using a focus group approach was employed to discuss caregiving experiences in a cultural context. Data were collected over an 8-month period in 2005. Twenty-four informants, mostly women, at varying points surrounding caregiving participated in a focus group interview. Each focus group lasted about 1 ½–2 hours. Thematic analysis was conducted by two bilingual researchers.
Findings.  Three key themes were identified: the caregiver role – competing priorities and beliefs, the extent and impact of caregiving, and the need for education and culturally-tailored support systems. Ten subthemes were identified within the three major themes: (1) facing double challenges; (2) changing attitudes about filial piety ( Hyo ); (3) providing care; (4) feeling out of control; (5) going through changing family dynamics; (6) being connected vs. providing connection; (7) paying back; (8) learning by themselves; (9) recognizing differences and (10) reconsidering geriatric care systems.
Conclusion.  The caregiving experiences described by Korean American families point to the need to identify and develop more focused outreach programmes as well as more culturally appropriate support services for this rapidly increasing population.     

The impact of gender regarding psychological well-being and general life situation among spouses of stroke patients during the first year after the patients' stroke event: a longitudinal study

BACKGROUND: The informal caregivers perceive lack of choice to take on the role of caregiving, receiving little or no preparation for the caregiving role at home. The typical informal caregiver is female, either a spouse or adult child of the care recipient, and seldom shares the responsibilities of caregiving with other family members. The spouses worry about the ill relative, but also about what consequences the disease might have for their own life. The worries seem to vary with gender and disease. There are, to our knowledge, few previous longitudinal studies that have focused on gender differences among spouses of stroke patients. OBJECTIVES: To explore gender differences among spouses in perceived psychological well-being and general life situation, during the first year after the patients' stroke event. DESIGN: Longitudinal study with three assessments regarding psychological well-being and general life situation during 1 year. SETTINGS: The study took place at a stroke ward, Stockholm, Sweden. PARTICIPANTS: Consecutively 80 female and 20 male spouses of stroke patients admitted to a stroke unit participated. METHODS: Data were analysed using analyses of variance. RESULTS: Female spouses have a negative impact on psychological well-being, while male spouses have a lower occurrence of emotional contacts in their social network. Consistently, the female spouses reported lower quality of life and well-being than the male spouses. CONCLUSIONS: This study generates the hypotheses that there are gender differences among spousal caregivers of stroke patients; female spouses are more negatively affected in their life situation due to the patients' stroke event than the male spouses. It is important to take the individual differences under consideration when designing a nursing intervention, to meet the different needs and demands of male and female caregivers. The interventions should focus on individual support, so that the caregivers can adapt to their new role and be comfortable and effective as informal caregivers.     

Exploring professional caregivers' perceptions. Balancing self-care with care for patients with Alzheimer's disease

With the are hundreds of studies about caregiver burden related to family caregivers that exist, little has been written about caregiver burden as it pertains to professional caregivers. The purpose of this study was to explore professional caregivers' perception and meaning associated with their caring for patients with Alzheimer's disease (AD). Twenty-two professional caregivers were interviewed. Content analysis was used to clarify respondents' interview data. Several themes emerged from the data related to beliefs about choosing and maintaining AD caregiving role, beliefs about self-efficacy, commitment and self-satisfaction, nature of family interaction of individuals with AD, grieving responses, and ability to maintain self-care through social support as well as solitary time. Implications include AD professional burden measurement; study related to recruitment, orientation, and staffing patterns; and effect on the quality of care provided to patients and their families.     

Correlates of health status for family caregivers in bereavement

The purpose of this retrospective cohort study was to identify aspects of caregiving associated with health status among family caregivers in bereavement. Study participants included 151 family caregivers of terminally ill patients who had died, on average, 294 days prior to the study telephone interview. The interview covered two main areas: patient characteristics and caregiver characteristics. Multivariate linear regressions revealed that as the age of the care recipient (regression coefficient [b] = -0.32; 95% confidence interval [CI] -0.48,-0.15) and caregiver (b = -0.14; 95% CI = -0.25, -0.02) increased, caregivers experienced a decline in their physical health during bereavement. Furthermore, caregivers who reported that caregiving interrupted their usual activities (b = -5.97; 95% CI = -9.79, -2.15) had a decline in physical health during bereavement. A poorer mental health status during bereavement was seen in caregivers who reported poor physical health during caregiving (b = -4.31; 95% CI = -8.17, -0.45); and that they received insufficient family support in caregiving (b = -6.01; 95% CI = -9.75, -2.27). It was also revealed that a home death was associated with higher mental health of the caregiver (b = 3.55; 95% CI = 0.26, 6.84). The practice implications of these findings are discussed in this paper.     

Caregivers of chronically ill elderly: perceived burden

Family members play a major role in providing caregiving assistance to elderly persons and their families. The effect of stressors on family members caring for a physically or mentally ill person has been referred to as caregiver burden. It is an important concern and will become more so with the inevitable aging of the population. Community health and home health nurses must be able to recognize those factors associated with caregiver burden to effectively render care to their clients and families. This study examined caregiver characteristics and the degree to which these variables affect caregiver burden. Although much research focuses on caregivers of Alzheimers clients, this research utilized a wider variety of client diagnoses to examine caregiver burden of those clients. A sample representing 88 caregivers of elderly chronically ill persons was obtained from various sources in the community. Demographic data about the caregiver was collected. The amount of burden they experienced was recorded using the Burden Interview (Zarit et al., 1986). This study found that there was a positive correlation between increased activities of care performed by the caregiver and caregiver burden. This included both the provision of direct care such as bathing and indirect care such as running errands, preparing meals, and performing housework. It was found that sons, as caregivers, reported significantly less burden than did daughters or other relatives. Community health and home health nurses working with families in a caregiving situation have an opportunity to reduce caregiver burden. This is done by assessment of the caregiving environment and implementation of plans for early intervention.