Articles: caregivers.
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Palliative medicine · Jan 2008
Multicenter StudyPreferences for location of death of seriously ill hospitalized patients: perspectives from Canadian patients and their family caregivers.
Previous studies involving palliative patients suggest a preference for dying at home. The purpose of this paper is to examine, prospectively, patient and family caregiver preferences for, and congruence with, location of death for hospitalized patients with cancer and end-stage medical conditions. Questionnaires were administered to 440 eligible in-patients and 160 family caregivers in five hospitals across Canada. ⋯ The results suggest that only half of all patients and family caregivers report a preference for a home death. Furthermore, half of the patient/family caregiver dyads disagree on preferred location of death. If one of the primary goals of end of life care is to enhance the quality of life of dying patients and their family caregivers, policies directed towards ensuring that patients die in their location of choice ought to be a priority and resources should be allocated to promote the development of excellent care, not only in the home, but also within our institutional settings.
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Multicenter Study
Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home.
Dying at home is a goal promoted by many healthcare providers and governments as a way to enhance the dying experience for cancer patients and their family members. A key element to realizing this goal is the availability of a family member who is willing to provide care at home. Little research has been conducted on the factors that influence family caregivers' ability to cope with providing end-of-life cancer care at home. ⋯ Semistructured interviews with 29 active family caregivers were conducted and thematically analyzed. Our findings suggest 5 factors that influenced the caregivers' ability to cope: (1) the caregiver's approach to life, (2) the patient's illness experience, (3) the patient's recognition of the caregivers' contribution to his or her care, (4) the quality of the relationship between the caregiver and the dying person, and (5) the caregiver's sense of security. Findings provide important information to assist in informing health services and policies directed at enhancing family caregivers' coping abilities.
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Health Soc Care Community · Sep 2007
Multicenter StudyExperiences of end-of-life care in community hospitals.
Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. ⋯ Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care.
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Pediatric blood & cancer · Jan 2007
Multicenter Study Clinical TrialCaregiving time in sickle cell disease: psychological effects in maternal caregivers.
Providing home care for a child with a chronic illness can be stressful for the family. The purpose of this paper is to examine patterns of caregiving and the associated psychological impact on maternal caregivers of children with sickle cell disease (SCD). ⋯ The perceived care burden of caregivers of children with SCD may be related to the unpredictable nature of the crisis care they provide. Additional attention is warranted to developing adequate resources for caregivers of children with SCD to mitigate the stress of unexpected crises.
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The primary goal of palliative care is to optimize the quality of life (QOL) of people living with a life-threatening illness and that of their families. While there have been important advances in measurement of the QOL of palliative care patients, little attention has been paid to the QOL of their carers (family caregivers). To develop and deliver the most effective services to these carers, their QOL needs to be measured with acceptable and psychometrically sound instruments that have content validity. ⋯ QOLLTI-F is unique in that in measuring one person's QOL (the carer's) it includes their perception of the condition of another (the patient). This attests to the close relationship between the two. It is also unique in that its content is derived from a qualitative study asking carers what is important to their own QOL, rather than focusing on the changes or burdens related to caregiving. QOLLTI-F also has the advantage of being briefer than other carer QOL measures. It contains measures of seven different domains that are determinants of carer QOL, in addition to a summary score. All these measures are valid, reliable and responsive to change in QOL.