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 caregiving skill: development of the concept

Families increasingly are expected to provide complex care at home to ill relatives. Such care requires a level of caregiving knowledge and skill unprecedented among lay persons, yet family caregiving skill has never been formally developed as a concept in nursing. The purpose of the study reported here was to develop the concept of family caregiving skill systematically through qualitative analysis of interviews with patients (n = 30) receiving chemotherapy for cancer and their primary family caregivers (n = 29). Open coding and constant comparison constituted the analytic methods. Sixty-three indicators of caregiving skill were identified for nine core caregiving processes. Family caregiving skill was defined as the ability to engage effectively and smoothly in these nine processes. Properties of family caregiving skill also were identified. Conceptualizing skill as a variable and identifying indicators of varying levels of skill provides a basis for measurement and will allow clinicians to more precisely assess family caregiving skill.     

Patterns of elderly spousal caregiving in dementia care: an observational study

AIM: The aim of this study was to describe which caring activities eight spouses performed when caring for a partner with dementia, and in what way these activities were carried out. BACKGROUND: Family caregivers are recognized as being the primary source of care for the community's older people. The largest group is comprised of spouses, with wives as the predominant caregivers. This informal care seems to be more or less invisible and performed in silence within the family. Despite the wealth of studies, the essence of family caregiving is not well understood. METHODS: Data collection was conducted by observing the dyads in their homes. A qualitative approach inspired by grounded theory was chosen to discover qualities and describe patterns of spousal caregiving in dementia care. RESULTS: The analysis yielded four broad themes, which included nine categories. Findings from the study shed some light on the invisible aspects besides the traditional hands-on caregiving. CONCLUSION: The elderly carers were engaged in demanding and time-consuming care ranging from supervision to heavy physical responsibility. They were caring for as well as about their partners. The study also showed that spouses were successful in managing their situation in different ways. The results reported in this article are unique as they come from direct observations in family home settings where a spouse cared for a partner with dementia. Knowledge about family caregiving is valuable for nurses as there is an emphasis on collaboration between family caregivers and professionals.     

Accommodating the stranger en casa: how Mexican American elders and caregivers decide to use formal care

Mexican American elders have higher levels of functional impairment and chronic illness, yet they use formal home care services less than do non-Hispanic White elders. This article describes the processes by which Mexican American elders and their caregivers decide to use home care services. Interviews were conducted with Mexican American elders (n = 11) and family caregivers (n = 12) for a sample of 23 individuals. The emerging substantive grounded theory included three stages that described the process of deciding to use home care services: Taking Care of our Own, Acknowledging Options, and Becoming Empowered. The processes describe how Mexican American families eventually accept home care services while maintaining their cultural norm of taking care of elders. The theory gives voice to both elders and caregivers in this process, adds to extant knowledge, and shapes interventions to support traditional Mexican American family values such as elders' staying at home as long as possible. The theory meets nursing's goals of reducing health care disparities by improving or sustaining elders' health and functional ability, decreasing the caregiving burden, and reducing health care costs.     

Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke‐recovery trajectory.     

Voices of Mexican American caregivers for family members with cancer: on becoming stronger.

This grounded theory study report describes the experience of 34 Mexican American (MA) female caregivers who provided care to a family member with cancer. Caregivers identified a process of "Becoming Stronger" as a result of their caregiver role. The emerging theoretical model of female MA cancer caregiving offers evidence to change current cancer care approaches from patient-focused to family-focused care for this ethnic group. Findings suggest that changes most responsive to cultural values and likely to provide accessible and quality cancer care for MA families are those that involve active partnering with MA caregivers to prioritize the patient's cancer 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.     

Negotiations about helpfulness--the relationship between formal and informal care in home care arrangements

Scand J Caring Sci; 2011; 25; 706–715 Negotiations about helpfulness – the relationship between formal and informal care in home care arrangements Background: Informal caregiving by family members is the most common way of caring for sick people at home. However, the number of care arrangements, in which both formal (nurses) and informal (family members) caregivers are involved, is considerable and increasing. Despite implicit assumptions in research that the involvement of nurses in home care arrangements is inherently beneficial, there is evidence that their involvement may have a destabilising effect. Aims: The purpose of this study was to investigate the relationship between nurses and family caregivers and its impact on the actual care that is provided. Method: Eighty‐eight interviews with family caregivers (n = 57) and nurses (n = 31) were conducted in Germany and analysed according to the Grounded Theory methodology. Findings: The relationship between formal and informal care is an encounter of two quite different perspectives that is focused on a negotiation process about caregiving work and the helpfulness of the actions taken and the interventions used. For family caregivers, it is determined by the goal of facilitating work and care for their sick family member. The nurses’ work is characterised by a process of shaping different realities in different homes. The results reveal the processes that lead to the involvement of nurses into home care arrangements and offer a deeper understanding of the negotiation processes between formal and informal caregivers. Conclusions: To provide sufficient support in home care, nurses need the ability to engage in negotiation processes that take the whole home care arrangement into account. Developmental work is needed to design services that are helpful for family caregivers.     

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample This study explored the needs of family caregivers during the transition from hospital to home. Data from 37 face-to-face interviews with 16 caregivers before discharge and at 2 weeks and 1 month after discharge were subjected to constant comparative analysis. Findings revealed changes in family caregivers' needs during the discharge transition. While preparing to take caregiving responsibility, caregivers reported a need for various types of information. After the discharge, but before home caregiving settled into a pattern, they needed help with caregiving practices. After reaching a pattern for providing family care, caregivers frequently reported needs for continuous emotional support. These findings provide a basis for transitional care services such as discharge planning and home health care services.     

Life of a caregiver simulation: teaching students about frail older adults and their family caregivers

The number of older adults with caregiving needs is rapidly escalating, and the majority of these adults are cared for at home by unpaid family members. Nurse educators must better prepare nurse graduates to meet the needs of this population, as well as to include family caregivers as part of the health care team. This article describes the design, implementation, and preliminary outcomes of a unique learning experience, the Life of a Caregiver Simulation, which uses narrative pedagogy to increase students' awareness and understanding of the needs of older adults, their family caregivers, and the community services they use. Subjective data from students (N = 25) indicated the simulation served as an effective catalyst for students to experience first-hand and understand the stress and burdens of caregiving.     

Psychosocial aspects of caregiving: perceptions of cancer patients and family caregivers

Purpose  

The care of cancer patients involves collaboration among health care professionals, patients, and family caregivers. As health care has evolved, more complex and challenging care is provided in the home, usually with the support of family members or friends. The aim of the study was to examine perceived needs regarding the psychosocial tasks of caregiving as reported by patients and caregivers. We also evaluated the association of demographic and clinical variables with self-reported caregiving needs.     

Responsibilities and Reactions of Family Caregivers of Patients Dependent on Total Parenteral Nutrition at Home

Abstract This prospective study assessed the caregiving responsibilities and reactions of family members who provide home care to a relative who is dependent on total parenteral nutrition (TPN). A short, semistructured interview based on the Roy adaptation model was used to gather data about the caregiving experiences of 20 relatives of adult TPN-dependent patients. Data were content analyzed, and frequently occurring themes identified. Results indicated that altered family responsibilities as well as negative and positive psychologic reactions to caregiving do occur. The interviews suggested that caregivers master TPN technology but make little use of assistance from extended family or professionals. Although depression and fatigue were reported as common, these family members felt capable and successful in their caregiving roles. Further longitudinal research with larger samples should allow for comparison of caregivers on demographic differnces, stress, and other variables pertinent to managing complex home care.     

Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge.

During the first few months after a stroke, family caregivers must quickly learn how to care for the stroke survivor in the home setting. Although there are some studies that addressed the needs and concerns of stroke caregivers during the early poststroke period, there are very few caregiver studies that reported strategies used by caregivers to deal with their needs and concerns, and studies are lacking that reported the advice that caregivers would offer to others. The purpose of this study was to determine the self-reported needs, concerns, strategies, and advice of family caregivers of stroke survivors during the first 6 months after hospital discharge. Using openended questions, we individually interviewed 14 female family caregivers of stroke survivors (8 African American, 6 white) to identify their needs and concerns, strategies they used to deal with stroke, and advice they would offer to other stroke caregivers. Findings revealed five major categories of caregiver needs and concerns: information, emotions and behaviors, physical care, instrumental care, and personal responses to caregiving. Based on the findings, an initial needs and concerns checklist was developed, along with a list of caregiver strategies and advice. Upon further testing, the needs and concerns checklist, as well as the list of strategies and advice, may help to identify relevant areas for caregiver intervention.     

Dis/integrated care: family caregivers and in-hospital respite care

AIM: The aim of this study was to explore family caregivers' experiences of in-hospital respite care for people with dementia and the factors that influenced their perceptions of the service. BACKGROUND: The provision of respite care is based on the assumption that temporary relief from caregiving will relieve caregiver stress and may possibly extend the duration of home care. Research evidence suggests that this is a simplistic perspective which fails to account for families' concerns about the quality of institutional care and the impact of relocation on the person being cared for. DESIGN: Nine family caregivers, using four different hospitals sites were interviewed during a period of 3 years from 1994 to 1997. The research texts were analysed using a critical discourse analysis approach drawing on the work of Foucault. FINDINGS: Family caregiver texts were distinguished by difference rather than by homogeneity. Caregivers occupied a range of positions in terms of their ability to take advantage of the respite time intermittent care offered. My reading of these texts has highlighted the aspects of nurse-family relationships that ameliorated, or alternately exacerbated, the tensions felt by caregivers, as they were torn between the necessity to have a break and their anxieties about the impact of in-hospital respite care on the person with dementia. CONCLUSION: Nurses' practices in this study were a critical element in facilitating, or alternately constraining, family caregivers' ability to relinquish care and to take full advantage of the respite time. The research findings highlight the need for nurses and other formal caregivers to locate themselves in a secondary and supporting caregiving role, to acknowledge the family caregivers as the primary caregiver, and use family caregivers in-depth and intimate knowledge of the needs of their relative to inform care within the institutional setting.     

Exploring dementia family caregivers’ everyday use and appraisal of technological supports

Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers’ everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.