Dyadic Relationship Scale: A Measure of the Impact of the Provision and Receipt of Family Care

Purpose: This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and Methods: The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. Results: The data supported a two-factor DRS that included negative dyadic strain (patient α = .84; caregiver α = .89) and positive dyadic interaction (patient α = .86; caregiver α = .85). The analysis supported the DRS\u27s construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Implications: Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad

The provision of informal care in terminal illness: An analysis of carers? needs using a discrete choice experiment

There is an increasing expectation that families will provide care at home for those with chronic, acute and terminal illness. There is a range of services available to support the home care of these patients. Carers of those in the terminal phase of illness face different demands and challenges than those caring for the chronically ill, disabled or aging; the patient?s health is deteriorating, often rapidly, and death is imminent. Yet the needs and requirements of this group of carers has been far less studied than those caring for people with chronic and continuing conditions. We argue that considering the reciprocal nature of relationships is important in understanding the provision of informal care. Carers? feelings for which tasks and responsibilities are most difficult are not the same as their preferences for additional support services. Carers preferences are influenced by their relationship with the patient. This study investigates carers? preferences for services to support their caregiving role. Carer preferences were investigated using a discrete choice experiment, in which 168 carers were asked first to choose between two packages of care and then between the chosen package and their current support. Data were analysed using mixed logit. The DCE results showed that the support most wanted was palliative care nursing, general nursing, and telephone advice available 24 hours. Carers providing high levels of care wanted respite care provided at home and help with the patient?s personal care. Where the care-giving need was relatively low, carers wanted help with household tasks, transport and a case co-ordinator. Overall, carers appeared to be satisfied with the support they received from palliative care services, but this varied with the personal circumstances of the carer. This study provides useful insights for those who plan and deliver palliative care in the community. It supports the view that effective support for carers must recognise the differing needs of individual carers. While our results do not provide any insight into how the pre-existing relationship between carer and recipient may affect preferences for care, it points to the need to explore further differences in preferences across respondents both in discrete choice work in general, and in designing services to support rather than replace informal carers.Informal care; carer's perspective; discrete choce experiment

Mobile Application Systems for Home Care: Requirements Analysis & Usage Potentials

Home care services increasingly gain importance due to demographic implications: insights on recent developments inGermany hereby relevant to industrialized countries like the USA are given. Portable application systems have only beenestablished sporadically in German care environments unlike the comparable domain of technical field service. This paper willidentify possible mobile usage scenarios by matching healthcare requirements to state-of-the-art concepts, such as productservicesystems. Open potentials concerning the support of actual care processes can be concluded thereby. An integratedmobile application system can minimize knowledge deficits and enhance the quality of home care. The results are of potentialrelevance not only to patients and caregivers but also to different providers of healthcare or IT solutions

Caregivers of Individuals with Intellectual Disability: An Examination of the Dynamic Process Model of Caregiver Well-Being

Through the years, scholars have made various developments in the area of caregiver research. As a result, policy makers and program developers have been able to better assist individuals with Intellectual Disabilities (ID) and their families. Additionally, convoluted caregiving concepts have been examined in an array of contexts and populations. Contextual models are vital in understanding the complex and dynamic experiences of caregivers. Although research has shown that some caretakers experience caregiver burden, other findings indicate that caregivers adapt well to their caregiving role. The purpose of the current study was to examine caregiver well-being through the dynamic process model of well-being. In contrast with previous work, this study examined constructs that have not yet been studied within caregiving models. More explicitly, the elements of our model consisted of caregiver positive supports, presence of meaning in life, search for meaning in life, meaning in caregiving, and aggression exhibited towards caregivers. Outcome variables included physical and mental health composite scores that were used to measure well-being. Furthermore, our model was tested with a sample predominately consisting of Latino caregivers, which is a population that has received little attention in this line of research. It was hypothesized that presence of meaning, search for meaning and meaning in caregiving would serve as mediating factors to caregiver well-being. Results showed that our meaning variables did not function as mediating factors for caregiver well-being. Although our data did not support our hypotheses, it was found that search for meaning contributed negatively to caregiver mental health scores, and that caregivers who experienced aggression from care recipients reported lower levels of meaning in caregiving. Lastly, our findings echoed previous findings indicating that positive support systems had a positive impact on caregiver well-being. The majority of our participants were Latinos; therefore, ethno-multicultural implications, such as marianismo, familism, and caregiving barriers related to immigration are discussed

Addressing the Health Needs of an Aging America: New Opportunities for Evidence-Based Policy Solutions

This report systematically maps research findings to policy proposals intended to improve the health of the elderly. The study identified promising evidence-based policies, like those supporting prevention and care coordination, as well as areas where the research evidence is strong but policy activity is low, such as patient self-management and palliative care. Future work of the Stern Center will focus on these topics as well as long-term care financing, the health care workforce, and the role of family caregivers

Caregiver Education and Service Utilization in African American Families Dealing with Dementia

For more than a decade attention has been focused on Alzheimer’s family caregivers in African American communities. The Fourth Report of the Advisory Panel on Alzheimer’s Disease to the U. S. Congress and the U.S. Department of Health and Human Services calls for “…public education and outreach efforts specifically targeted to ethnic elders and their families and communities through the development and dissemination of culturally relevant materials emphasizing both the established facts about [Alzheimer’s Disease and Related Disorders] and the efficacy of seeking treatment.” (Advisory Panel on Alzheimer’s Disease, 1993, p. 50). While federal financing and state initiatives have addressed some of the inequities, minority family caregivers remain underserved

The experience of hope for informal caregivers of palliative home care patients : a grounded theory exploration

The purpose of this study was to explore the processes of hope in informal caregivers of palliative patients. Interviews were conducted with caregivers who were living with and currently providing care to a palliative patient at home. Saturation was reached with 10 caregivers, five females and five males, from 2 cities in Saskatchewan, Canada. The design of this qualitative study was Glaser’s (2001) grounded theory. Broad, unstructured face to face audio taped interviews were conducted in the participants’ homes. Interviews were transcribed verbatim and analyzed using constant-comparative method of analysis in order to identify the main concern of the participants related to hope, and the basic social processes used to resolve that concern. “Eroding hope” was the main concern relating to hope during caregiving for a palliative patient. Eroding hope was a result of bad days, negative messages, and experiences with the health care system. The participants deal with eroding hope by using the basic social process of “hanging on to hope.” Hanging on to hope has 4 sub-processes: a)doing what you have to do, b)living in the moment, c)staying positive, and d)writing your own story. The support of friends, family, and health care professionals and connecting with something bigger and stronger were sub-processes of hanging on to hope that together directly affect the other sub-processes.The findings of this study have direct application for the care and support of informal caregivers providing palliative care at home, as a basis for assessment and interventions that will assist caregivers to hang on to hope. Nurses and other health care professionals need to recognize and value the experience of hope for caregivers by addressing, teaching, and reinforcing the sub-processes and ways of hanging on to hope into their practice

Care of Aging Parents: The Experiences of Middle-Aged Filipino Women

The purpose of this study was to examine and analyze parent care as experienced by middle-aged Filipino women, particularly those who have resided in the United States for over 20 years. There is little information known about this topic; therefore, a grounded theory study design was utilized. Open-ended, semi-structured interviews of 29 Filipino women were conducted in English and/or Tagalog, and at times a combination of both languages. Data were transcribed verbatim from the audio-recorded interviews and analyzed using a constant comparative method of analytic induction. Field notes were kept and patterns of observation were analyzed according to their significance. Data from the study revealed five interrelated categories: Giving Back, Taking Action, Sacrificing Self, Balancing, and Searching Out. Giving Back is the causal condition for self commitment in order to provide care. It forms the foundations and reasons for caring behavior. Taking Action is the context within which the implementation of giving back is conducted. It demonstrates how family members manage to care for aging parents. Sacrificing Self encompasses the meaning of a caring behavior. Sentiments such as affection, understanding, and respect emerged as prevalent themes to define care; and that providing care to an aging parent is to sacrifice oneself despite all tribulations. Balancing represents the action/interaction strategies in response to Sacrificing Self. Searching Out is the consequence of Sacrificing Self. It is reflective of the adult children\u27s perceptions and vision of their own aging. The interrelationships of these categories has led to the identification of Sacrificing Self. Sacrificing Self details the process of understanding the caregiver in the context of the Filipino culture. It incorporates the conditions, contexts, strategies, and consequences of the adult children\u27s caring behavior. In the process of caring, two contextual dimensions evolved: caring for partially dependent parent (PDP), and caring for totally dependent parent (TDP). These dimensions are characterized by different sets of patterns and behaviors related to care of aging parents. In addition, strengths and difficulties of caregiving were identified. The findings of this study have implications for nursing practice, nursing education, nursing research, and policy legislations. The major implication is the need for culturally sensitive formal support systems in order to provide respite care opportunities for Filipino women who are caring for the aging parents in the United States

African American Caregiver Resiliency: Resources, Vulnerabilities, Coping, And Well-Being Among Caregivers Of Persons With Chronic Illness

Using a sample of African American family members from the National Survey of Families and Households: NSFH), this study explored the experience of caring for a family member with chronic illness. Guided by the Model of Family Stress, Adaptation, and Resiliency the study looked at the role that family stress and coping factors: specifically, resources, vulnerabilities, and coping behaviors) have on caregiver well-being. T-tests and chi-square analyses of the entire sample, both the caregivers and non-caregivers: N = 2390) revealed no significant differences, other than gender, between caregivers and non-caregivers across demographic, stressor, and coping factors. Caregivers were more likely to be female. Moreover, though a correlation did exist between caregiving and depression: using the CES-D depression scale), regression analyses revealed that this relationship was not significant when other independent family stressors, namely divorce and unemployment, are controlled for. Thus, caregiving as an independent family member stressor was not related to depression or other well-being indicators. Finally, an investigation of a subset of caregivers: N = 369) in the sample was conducted, via path analyses, to look at the relationship between model factors and caregiver well-being. Results revealed that caregiver vulnerabilities, particularly employment and caring for more than one ill member, were significantly related to health reports. Coping behaviors did not mediate these relationships. The results of this study suggest that the context of the caregiver\u27s family life is directly related to their well-being, perhaps more so than coping behaviors. This has implications for future development of family-based support interventions