Women Family Caregivers Research Articles

The Relationship among Perceived Entrapment, Depression and Subjective Well-being of Women as Family Caregivers Caring for Dementia Elderly.

This study was designed to examine the relationship between perceived entrapment to depression and subjective well-being of women as family caregivers caring for elderly dementia patients. One hundred and sixty-nine women family caregivers were recruited from two high schools located in Seoul, Korea for this descriptive study. The instruments used were The Entrapment Scale, The Center for Epidemiology Studies Depression Scale (CES-D) and Subjective well-being scale. The score of perceived entrapment significantly correlated with depression and subjective well-being. The significant predictor of depression in women caregivers was perceived entrapment, 50.3% of the variance in depression. Also, perceived entrapment was predictor of subjective well-being in women caregivers, explaining 41.4% of the variance in depression. This study showed that perceived entrapment is an important predictor for depression and subjective well-being. Therefore, in order to reduce depression in women caregivers, it is necessary to design an intervention program that helps with coping and reduces perceived entrapment.

An examination of the measurement adequacy of the CES-D among African American women family caregivers

The Center for Epidemiologic Studies Depression Scale (CES-D) has been used extensively in community-based surveys to describe and explain the prevalence of depression in the general population. Yet, questions have been raised regarding its adequacy for use among ethnic minority because of its factor variance. Employing a within-gender and race approach, we test the validity of the CES-D for use among a sample of African American women family caregivers. Using data from a cross-sectional community sample of 521 urban and rural African American women family caregivers, this study examines the dimensionality of the CES-D by testing four different measurement models through confirmatory factor analyses. Among the four measurement models tested using Weighted Least Squares estimation, our findings support previous research that has identified four dimensions in the CES-D: depressed affect, positive affect, somatic complaints, and interpersonal relations for our sample. Additionally, a three-factor (somatization) model and a four-factor model were shown to be equivalent. Implications for further measurement and model testing, and the use of the CES-D for research among African American women caregivers are discussed.

Predictors of Depressive Symptomatology in Family Caregivers of Women With Substance Use Disorders or Co-Occurring Substance Use and Mental Disorders

This study utilized a stress-process model to examine the impact of having a female family member with substance use or co-occurring substance use and mental disorders on family caregivers' depressive symptomatology. Participants were 82 women receiving substance abuse treatment and the family member providing the most social support for each woman. Greater caregiver depressive symptomatology was predicted by greater care recipient emotional problems, less care recipient social support, and poor caregiver health. Implications of findings for treatment and future research are discussed.

Current Practices and Perspectives on Breast Cancer Screening and Treatment in Older Women with Dementia

To explore the nature of breast cancer screening and treatment decisions in older women with dementia. Thematic analysis of semistructured telephone interviews. Alzheimer's Disease Research Center Registry. Twenty-three family caregivers (CGs) of women with dementia (WWD). Semistructured questions regarding CGs' perceptions of current and predementia beliefs held by the WWD about the importance of regular screening mammograms, CGs' views about the importance of obtaining regular screening mammograms for the WWD and whether dementia stage of the WWD influenced these views, and CGs' view of what level of treatment would be appropriate if WWD they were caring for were to be diagnosed with breast cancer. In CGs of women with mild to moderate (but not severe) dementia, mammogram importance ratings reflected perceived predementia importance levels (generally high). Most CGs of women with mild to moderate dementia planned to continue screening regardless of dementia severity of the WWD, but CGs of women with severe dementia at the time of the interview did not generally consider screening important. Physician recommendations were frequently found to influence screening practices. CGs' views on appropriate treatment if the WWD developed breast cancer varied widely except in the case of severe dementia, in which case comfort care was consistently preferred. Breast cancer screening and treatment in dementia are active areas for healthcare decision-making, and supportive interventions involving physicians, CGs, and WWD are needed.

Problem-solving training for family caregivers of women with disabilities: A randomized clinical trial

Objective To examine the effectiveness of an individualized problem-solving intervention provided to family caregivers of women living with severe disabilities. Design Family caregivers were randomly assigned to an education-only control group or a problem-solving training (PST) intervention group. Participants received monthly contacts for 1 year. Participants Family caregivers (64 women, 17 men) and their care recipients (81 women with various disabilities) consented to participate. Main outcome measures Caregivers completed the Social Problem-Solving Inventory – Revised, the Center for Epidemiological Studies Depression scale, the Satisfaction with Life scale, and a measure of health complaints at baseline and in three additional assessments throughout the year. Results Multilevel modeling was used to conduct intent-to-treat analyses of change trajectories for each outcome variable. Caregivers who received PST reported a significant linear decrease in depression over time; no effects were observed for caregiver health or life satisfaction. Caregivers who received PST also displayed an increase in constructive problem-solving styles over the year. Conclusions PST may benefit community-residing family caregivers of women with disabilities, and it may be effectively provided in home-based sessions that include face-to-face visits and telephone sessions.

«Estar tranquila»: la experiencia del descanso de cuidadoras de pacientes con demencia avanzada

Objective To understand caregivers’ experience of rest. Method We performed a qualitative study guided by grounded theory procedures. This study forms part of a wider study about burden relief in vulnerable situations. Seventeen women family caregivers of patients with advanced dementia were purposely sampled. Data were collected with 17 semi-structured interviews and were analyzed following grounded theory procedures. Results Caregivers did not rest as previously, with rest being incomplete and depending on the well-being of the sick relative. In this study, tranquillity emerged as the central element of this new experience of rest. Rest was perceived as an interpreted experience involving organizational and emotional effort. Caregivers created and negotiated conditions that would provide the tranquillity to be able to rest. Conclusions The present study provides greater insight into the experience of relief from the burden of care and highlights the moral connotation present in family care. Identifying how caregivers rest and what subjectively enables them to do so will not only help healthcare professionals to support and promote rest, but will also help to avoid blaming caregivers for not being able or wanting to rest. Support services should bear in mind the change that has taken place in the experience of relief in caregivers’ lives.

Development of the NIDA-Funded Center on Substance Abuse and Mental Illness

This article describes one school's effort to establish a social work research development center in the area of coexisting drug and mental disorders (dual disorders), within the context of the social work profession's efforts to compete more effectively for federal research grants. This center was funded as part of a successful application in response to the National Institute on Drug Abuses announcement of support for a Social Work Research Development Program stressing the development of social work research in drug abuse intervention and services research. The center builds on the school's previous research and training experiences in the area of co-occurring drug and mental disorders. The center's purpose, structure, and institutional impact are described, with particular attention to the challenges faced in both its formation and its operation and the lessons learned that could generalize to other similar efforts. KEY WORDS: dual diagnosis; dual disorders; research development; research infrastructure; social work research ********** In November 1999, the National Institute on Drug Abuse (NIDA) released a program announcement of support for a Social Work Research Development Program stressing the development of social work research in drug abuse intervention and services research. Below, we describe one school's effort to establish a social work research development center in the area of coexisting substance use and mental disorders (dual disorders) which was funded as part of this NIDA initiative. ADDRESSING THE NIDA ANNOUNCEMENT The Mandel School of Applied Social Sciences (MSASS) at Case Western Reserve University has long recognized its responsibility to provide productive educational research experiences in the fields of substance use and mental disorders. Building on our past efforts, faculty at MSASS responded to NIDA'S program announcement for a Social Work Research Development Program. Our submission was funded in June 2002. This five-year project was designed to support a multidisciplinary study team to address the theme of facilitators and barriers to treatment in individuals with dual disorders: The program linked faculty at MSASS to experts in Case Western Reserve University's School of Medicine who had existing NIDA research support and to national experts. The program's two objectives were (1) to establish and implement an infrastructure improvement plan that supports knowledge and research on treatment barriers and facilitators in dually diagnosed individuals and their families and (2) to generate pilot research and ensuing RO1 proposals in the identified core area through the establishment of multidisciplinary working teams. Eight MSASS faculty and collaborators from the School of Medicine formed the nucleus of a team to implement pilot studies related to facilitators of and barriers to treatment of dually diagnosed individuals. One pilot study investigated the social network characteristics and nature of perceived social support among dually diagnosed, low-income women; another studied dually diagnosed female offenders' suitability for specific treatments, considering their motivation for change and readiness for treatment and their social networks. A third pilot study examined the family caregivers of women with dual disorders, with particular attention given to their caregiving roles and burdens. More than 500 participants were interviewed at community agencies and in corrections settings to complete these pilot studies. Information generated from the pilot studies and other planned program learning experiences resulted in the preparation and submission of R01 proposals. CHALLENGES It is interesting that one of our major challenges came before we received grant funding. Although we had submitted a competitive program proposal that was scored, a major criticism was that the school did not offer enough faculty support and course offload. …

Familism Beliefs and Psychological Distress Among African American Women Caregivers

Drawing from stress and coping models, we examined heterogeneity in the expression of familism (i.e., beliefs about the caregiving role) and its impact on psychological distress among African American women caregivers. We relied on data from the Black Rural and Urban Caregivers Mental Health and Functioning study, a cross-sectional study of 521 midwestern African American women family caregivers. First we used the ordinary least squares regression method to examine the factors predicting caregiving beliefs. Subsequently, using hierarchical linear regressions, we regressed caregivers' depressive symptoms and perceived stress on their familism beliefs while controlling separately for interpersonal, personal, and situational contextual factors. Wife caregivers, caregivers with lower levels of education, and caregivers with lower levels of mastery held significantly more traditional caregiving beliefs. Also, having poor caregiving relationships; being younger; being unemployed; and having lower levels of education, self-rated health, and mastery were all associated with higher levels of depression and perceived stress in caregivers. Traditional caregiving beliefs were also significant predictors of higher levels of depression and perceived stress. Although familism is culturally and socially popular, traditional beliefs in the caregiving role can lead to negative psychological consequences for African American women caregivers. Policies that support the realistic involvement of caregivers are needed to prevent negative consequences for caregivers.

The Impact of Caregiver-Care Recipient Relationship Quality on Family Caregivers of Women With Substance-Use Disorders or Co-Occurring Substance and Mental Disorders

ABSTRACT This cross-sectional study utilized a stress-process model to examine the impact of caregivers' (N = 82) perceptions of their relationship quality with a female family member (i.e., care-recipient) with substance-use or co-occurring substance and mental disorders on caregivers' perceived burden. Regression findings indicate that relationship quality impacts both subjective and objective burden. Higher levels of emotional support given to the care recipient by the caregiver predicted lower levels of caregiver displeasure; whereas higher levels of undermining of the care recipient by the caregiver predicted higher levels of caregiver stigma. Higher levels of emotional support received by the caregiver from the care recipient were associated with lower levels of caregiver displeasure and lower objective burden; higher levels of undermining of the caregiver by the care recipient predicted higher objective burden. Implications for practice and service delivery are presented.

Indicadores de la calidad de la relación diádica de mujeres en tratamiento por drogodependencia

Objectives: The quality of relationship between family caregivers and care recipients with dual disorders can impact care recipients’ well-being and treatment outcomes as well as caregivers’ well-being and involvement in care. This paper examines the impact of caregiver stressors and well-being on relationship quality of family caregivers of women with substance use disorders or co-occurring substance and mental disorders.

Toward population‐based indicators of quality end‐of‐life care

Quality indicators (QIs) are tools designed to measure and improve quality of care. The objective of this study was to assess stakeholder acceptability of QIs of end-of-life (EOL) care that potentially were measurable from population-based administrative health databases. After a literature review, the authors identified 19 candidate QIs that potentially were measurable through administrative databases. A modified Delphi methodology, consisting of multidisciplinary panels of cancer care health professionals in Nova Scotia and Ontario, was used to assess agreement on acceptable QIs of EOL care (n = 21 professionals; 2 panels per province). Focus group methodology was used to assess acceptability among patients with metastatic breast cancer (n = 16 patients; 2 groups per province) and bereaved family caregivers of women who had died of metastatic breast cancer (n = 8 caregivers; 1 group per province). All sessions were audiotaped, transcribed verbatim, and audited, and thematic analyses were conducted. Through the Delphi panels, 10 QIs and 2 QI subsections were identified as acceptable indicators of quality EOL care, including those related to pain and symptom management, access to care, palliative care, and emergency room visits. When Delphi panelists did not agree, the principal reasons were patient preferences, variation in local resources, and benchmarking. In the focus groups, patients and family caregivers also highlighted the need to consider preferences and local resources when examining quality EOL care. The findings of this study should be considered when developing quality monitoring systems. QIs will be most useful when stakeholders perceive them as measuring quality care.

Advocacy of Women Family Caregivers: Response to Nonsupportive Interactions With Professionals

Support from health and social service professionals assists women in caring for a relative with a chronic condition. However, nonsupportive interactions coexist with supportive interactions and might have unanticipated consequences. The purpose of this ethnographic study was to examine advocacy as a proactive response to nonsupportive interactions with professionals among women family caregivers in four caregiving situations. Data generation included in-depth interviews with 34 women. Interviews were tape-recorded, transcribed verbatim, and analyzed using thematic and constant comparative analysis techniques. As a consequence of nonsupportive interactions women experienced negative feelings, a lack of trust, powerlessness, and challenges in their caregiving situations that were catalysts for advocacy involving assertively taking charge in a relationship with a health professional. As advocates women employed strategies of monitoring their relative's condition, educating themselves or others, negotiating or fighting for resources, or campaigning for change. There were stress and fatigue involved in becoming an advocate, but the women also described the experience as one of personal growth. This research provided insight into the role of nonsupportive interactions with professionals as a catalyst for the development of individual-level advocacy initiatives.

Non-supportive interactions in the experience of women family caregivers

The purpose of this ethnographic study was to identify and describe types of non-supportive interactions perceived by 59 women family caregivers in four diverse situations. Participants included 15 mothers of infants born prematurely, 14 mothers of a child with a chronic disease (asthma or diabetes), and women caring for an adult family member with either cancer (15) or dementia (15). Data collection methods included an initial in-depth interview with all women, followed by a second interview with a smaller group of caregivers including a card sort exercise that was based on thematic content analysis of the first interview data. A typology of non-supportive interactions was developed from analysis of the first two interviews and confirmed in a final interview with a subset of study participants. Interviews were audio-taped and transcribed verbatim. Women in all caregiving situations described experience with three types of non-supportive interactions. These interactions were negative, ineffective, or lacking expected support. The women's appraisal of interactions as supportive or non-supportive was rooted in their personal expectations and the context of their situation. Information about types of non-supportive interactions can sensitise professionals, family and friends to mismatches between their assistance and caregivers' requirements, potentially avoiding negative consequences.

Predictors of Dyadic Relationship Quality of Women in Substance Abuse Treatment

ABSTRACT Objectives: The quality of relationship between family caregivers and care recipients with dual disorders can impact care recipients' well-being and treatment outcomes as well as caregivers' well-being and involvement in care. This paper examines the impact of caregiver stressors and well-being on relationship quality of family caregivers of women with substance use disorders or co-occurring substance and mental disorders. Methods: Eighty-two women receiving in-patient or out-patient substance abuse treatment and the family member/significant other, nominated by each woman, who provided her with the most social support, were interviewed in this nonexperimental cross-sectional study. A stress-coping model was utilized to identify the impact of family caregivers' stressors (care recipient behavioral, substance abuse, and mental health problems) and caregiver well-being (burden and depressive symptomatology) on caregivers' perceptions of the quality of their relationship with their care recipient. Results: Findings from multiple regression analyses, across four types of caregiver well-being, show that greater perceived support to the caregiver was predicted by fewer perceived care recipient substance abuse problems, whereas higher levels of undermining of the caregiver was predicted by greater care recipient behavioral problems and by the family caregiver being a significant other of the care recipient. Care recipient classification as having a current dual disorder as compared to a current substance use disorder only was not a significant predictor of perceived support given to the caregiver or of perceived undermining of the family member. Conclusions: The findings suggest interventions for family caregivers need to be tailored to address different and possibly multiple groups of caregivers, specific types of stressors, and care recipient behavioral problems.

Family Caregivers of Women with Physical Disabilities.

Cross-sectional, correlational analyses of data from two separate studies were conducted to examine the correlates of adjustment among family caregivers of women with disabilities. Participants included 40 caregivers of women with spinal cord injuries in the first study and 53 caregivers of women with cerebral palsy, traumatic brain injury, and other neuromuscular disabilities in the second study. It was hypothesized that a negative problem-solving style would be associated with greater caregiver distress in both studies, and that caregiver adjustment would be associated with care recipient depression in the second study. As expected, results indicated that a higher negative orientation toward solving problems was associated with caregiver depression and lower well-being. However, in the second study, caregiver characteristics were not associated with care recipient depression. These data indicate that considerable variability exists in caregiver adjustment. Methodological limitations and the implications for research, service, and policy formation are! discussed.

Immigrant women family caregivers in Canada: implications for policies and programmes in health and social sectors

Migration has become a profound global phenomenon in this century. In Canada, uncoordinated policies, including those related to immigration, resettlement, employment, and government funding for health and social services, present barriers to immigrant women caregivers. The purpose of this paper is to share relevant insights from individual and group interviews with immigrant women family caregivers, service providers and policy influencers, and discuss these in relation to immigration, health and social policy, and programme trends in Canada. The present authors conducted individual interviews with immigrant women family caregivers (n = 29) in phase 1, followed by two group interviews with women family caregivers (n = 7), and two group interviews with service providers and policy-makers (n = 15) in phase 2. Using an inductive approach, the authors employed thematic content data analysis. Immigrant women experienced barriers to health and social services similar to Canadian-born family caregivers, particularly those who have low incomes, jobs with limited flexibility and heavy caregiving demands. These immigrant women family caregivers avoided certain formal services for a variety of reasons, including lack of cultural sensitivity. However, their challenges were compounded by language, immigration and separation from family in the home country. The identified barriers to support reinforce the importance of modifying and expanding policies and programmes affecting immigrant women's ability to care for family members with illnesses or disabilities within the context of Canadian society. Participants recommended changes to policies and programmes to deal with information, transportation, language, attitudinal and network barriers. The various barriers to services and programmes which were experienced by immigrant women caregivers underscore the importance of reviewing policies affecting immigration, caregiving, and access to health and social services. Intersectoral collaboration among agencies is essential to reduce the barriers identified in the present study, and to establish services which are linguistically and culturally appropriate.

The Impact of Caregiving on Family Caregivers of Women With Advanced Breast Cancer

The Impact of Caregiving on Family Caregivers of Women With Advanced Breast Cancer

Information needs and coping styles of primary family caregivers of women following breast cancer surgery.

To determine the information needs and unmet needs of primary family caregivers of women with breast cancer, their informational coping styles, and the relationships among needs, coping styles, and caregiver and patient variables in the first three weeks after surgery. Descriptive, correlational survey. Three surgical inpatient units at one private and two public hospitals in Perth, Western Australia. 141 primary family caregivers of women having surgery for breast cancer. Modified Family Inventory of Needs-Husbands and the Miller Behavioral Style Scale administered within one week after surgery and repeated one to two weeks later, after the postoperative visit with the surgeon. Information needs, unmet needs, informational coping styles. All 30 needs were rated as important by the majority of participants. A reduction in the median percentage of unmet needs occurred between time 1 (22%) and time 2 (10%) (p = 0.00004). Caregivers with children younger than 20 had a greater number of needs than the remaining sample (p = 0.001). Caregivers who received information from the breast nurse counselor and medical staff had the lowest percentage of unmet needs compared with those reporting any other source of information (p = 0.007). Caregivers of private patients had more unmet needs compared with public patients' caregivers (p = 0.035). Most caregivers displayed a high monitoring coping style, but further analysis of composite monitoring and blunting profiles revealed that 11%-16% were low monitors as well as low blunters and another 22%-26% displayed an apparently conflicting style of both high monitoring and high blunting. Western Australian caregivers have a similar range and priority of needs as those previously reported internationally. Caregivers in the private system, where breast centers are not established, are at risk for not having their needs met. Further studies are needed to determine how informational coping styles may affect family caregivers' need for and response to education given by nurses. Breast nurse counselors and other nursing staff play an important role in caregiver support. Caregivers with young children need additional support. Caregivers' coping styles indicate the need for high levels of information, which, paradoxically, may lead to increased distress. Therefore, nurses should consider assessing caregivers' informational coping styles to balance the amount of information given with appropriate strategies for assisting caregivers to cope with stressful information.

Early Detection Measures for Cancer in Family Caregivers of Minority Women: An Educational Program

Family caregiving is an essential part of our health care system. Family caregivers are often neglected. Because the majority of caregivers are women, special attention should be given to these women. Caregiving women require education and guidance to support them not only in caregiving roles but also in taking care of their health. The purpose of this article is to educate family caregivers about early detection and screening measures for two common forms of cancer among minority women. Specifically, this article presents an educational program that serves as guidelines for home care nurses to educate family caregivers to practice early detection for both breast and cervical cancer. It is agreed that to design an effective educational program for family caregivers, home health nurses have to take into consideration the various barriers to breast cancer screening, including personal, sociodemographic, and external barriers.

Participation of immigrant women family caregivers in qualitative research.

The recruitment of articulate, expressive participants is an essential part of methodology in qualitative research. This article presents the authors' experience in the recruitment of immigrant women of Chinese and South Asian origin in an ethnographic study. The study included women caring for an adult or child family member who had a chronic health problem. Knowledge of women family caregivers' health is restricted by the failure to include diverse groups of women in research. In this article, the authors discuss issues related to recruitment and participation of immigrant women in research, including establishing access to diverse groups of women, benefits for immigrant women, and placing the researcher and research process on the same level. Practical research strategies to address these issues and engage the women in research that portrays their perspectives are presented. The authors' discussion concludes with reflection on their experience and that of other researchers.