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Journal article

The TBI-CareQOL Measurement System: Development and Preliminary Validation of Health-Related Quality of Life Measures for Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury

Objective To develop a new measurement system, the Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL), that can evaluate both general and caregiving-specific aspects of health-related quality of life (HRQOL) in caregivers of persons with traumatic brain injury (TBI).

Mon, 06/10/2019 - 13:44

Understanding Health-Related Quality of Life in Caregivers of Civilians and Service Members/Veterans With Traumatic Brain Injury: Establishing the Reliability and Validity of PROMIS Fatigue and Sleep Disturbance Item Banks

Objective To examine the reliability and validity of Patient-Reported Outcomes Measurement Information System (PROMIS) measures of sleep disturbance and fatigue in traumatic brain injury (TBI) caregivers and to determine the severity of fatigue and sleep disturbance in these caregivers. Design Cross-sectional survey data collected through an online data capture platform. Setting A total of 4 rehabilitation hospitals and Walter Reed National Military Medical Center.

Mon, 06/10/2019 - 13:37

Supporting a friend, housemate or partner with mental health difficulties: The student experience

Aims: When experiencing mental health difficulties, university students turn to their friends for support. This study assessed the consequences of caregiving among a university sample, identifying predictors of caregiving burden among students. Methods: A total of 79 students with experience of supporting a friend with mental health difficulties were recruited through a UK student mental health charity to complete an online survey.

Mon, 06/10/2019 - 12:31

The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Background: Caring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family. Objective: The aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages. Methods: Grounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs.

Mon, 06/10/2019 - 12:27

Emotional and social repercussions of stroke on patient-family caregiver dyads: Analysis of diverging attitudes and profiles of the differing dyads

For patients, the social and emotional repercussions of stroke include shame, personality changes, and upheavals experienced by the couple (i.e. patient and main family caregiver). These impacts on the couple ‘patient/family caregiver’ are scarcely documented. Focusing on the perceptions of the patients and the family caregivers living at home, two years after a stroke occurrence, the aims of the study were to analyse the concordance of attitudes towards the emotional and social repercussions of stroke and to determine the profiles of the differing dyads.

Mon, 06/10/2019 - 12:21

How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers' Outcomes?

Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.; Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.; Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cro

Mon, 06/10/2019 - 12:14

Community-Based Mental Health Care: Stigma and Coping Strategies Among Professionals and Family Caregivers in the Eastern Region of Ghana

To a large extent caregivers perceive stigma through their social and community interactions by virtue of their association with persons with mental health problems. Meanwhile, evidence on their strategies for coping with potentially undesirable experiences linked with stigma is limited. Using a descriptive qualitative approach, the present study explored affiliate stigma among mental health professionals and family caregivers of persons with mental illness.

Mon, 06/10/2019 - 12:10

A translational approach to design effective intervention tools for informal caregivers of dependent cancer patients

Objectives Caregivers of terminal patients often report a higher prevalence of unmet needs than cancer survivors. However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated.

Mon, 06/10/2019 - 12:06

Experience of companionship among family caregivers of persons with dementia: A qualitative study

We examined how caregivers experienced the influence of dementia on their relationships with afflicted family members. Family caregivers (n = 15; 11 women and four men; age 39–92 years) of people with dementia participated in semi-structured interviews. The data were analyzed according to Kvale and Brinkman. The analysis identified one overarching theme, experiences of companionship, and four subthemes, namely experiences of loss and loneliness; role change; communication alteration; and caring considerations and coping resources.

Mon, 06/10/2019 - 12:00

Accounts of Family Conflict in Home Hospice Care: The Central Role of Autonomy for Informal Caregiver Resilience

End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts.

Mon, 06/10/2019 - 11:44