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Journal article

How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer

Background: Health professionals commonly underestimate caregiver needs for information about palliative care, death and dying and may feel poorly prepared to discuss these issues. Few studies have sought caregiver perspectives of these communication practices.

Wed, 06/06/2018 - 11:40

Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers

Background: Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals’ attitudes to palliative care with few studies exploring the views of patients and their carers. Aim: To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings.

Wed, 06/06/2018 - 11:32

Comparing Affiliate Stigma Between Family Caregivers of People With Different Severe Mental Illness in Taiwan

The family caregivers of people with mental illness may internalize the public stereotypes into the affiliate stigma (i.e., the self-stigma of family members). This study aimed to compare the affiliate stigma across schizophrenia, bipolar disorder, and major depressive disorder, and to investigate potential factors associated with affiliate stigma.

Wed, 06/06/2018 - 11:23

‘If it weren't for me…’: perspectives of family carers of older people receiving professional care

Background: In the Scandinavian countries and elsewhere, family care is important as a complement for older people in the professional care system. Better understanding of this role could lead to better cooperation between professionals and family carers and better use of family carers as a resource in care for older people. Aim: The aim of this study was to explore experiences of the role of family carers of older people in need of services and therefore to increase our understanding of this role.

Wed, 06/06/2018 - 11:12

Involved, inputting or informing: 'Shared' decision making in adult mental health care

Background A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long-term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes; however, there has been little research to evaluate how routinely family is invited to participate in SDM, or what this looks like in practice.

Wed, 06/06/2018 - 10:20

The burden perceived by informal caregivers of the elderly in Saudi Arabia

OBJECTIVES: The objective of this study was to discover the characteristics of informal caregivers of elderly patients; to determine the socioeconomic, psychological, and physical consequences facing informal caregivers; and to measure their burdens and needs. MATERIALS AND METHODS: This study was a cross-sectional survey of informal caregivers of elderly patients. Participants were recruited from different hospitals and primary care clinics in Riyadh, Saudi Arabia. For an intended sample size of 384 caregivers, a multistage sampling was used.

Wed, 06/06/2018 - 09:35

Negotiating the care-giving role: family members' experience during critical exacerbation of COPD in Norway

Healthcare policies often state that complex conditions are to be treated outside hospital in various forms of public-private partnership. Chronic obstructive pulmonary disease ( COPD) is a progressive illness that includes episodes of serious acute exacerbations characterised by extreme breathlessness. There is limited knowledge about COPD exacerbations from the perspective of family caregivers and implications of the changing boundary between hospital care and care at home.

Mon, 06/04/2018 - 14:47

Community provision for informal live-in carers of stroke patients

Stroke is common and disabling. Most stroke patients are cared for at home by informal carers. This study of informal carers of stroke patients measured service provision and satisfaction with different aspects of community care received by these carers. Dissatisfaction was expressed with training and information provision for carers, communication between carers and community services, speed of response and coordination of community services, and perceived support. Problems of information provision were most marked for those patients with most disability and/or older carers.

Thu, 07/20/2017 - 15:24

Evaluating psycho-educational interventions for informal carers of patients receiving cancer care or palliative care: Strengths and limitations of different study designs

Despite evidence of negative psychological sequelae and unmet needs, there are few evaluated interventions for informal caregivers in cancer and palliative care. The aim of this article is to debate the strengths and limitations of randomized controlled trials (RCTs) and other designs that can be used to evaluate the effectiveness of these interventions. Psycho-educational interventions are used as example for this debate article, as a number of studies of various designs evaluating this type of intervention have been published.

Thu, 07/20/2017 - 15:23

Effects of stroke on informal carers

Informal carers have a pivotal role in caring for patients who have had a stroke. Research has shown that informal carers have unmet information, psychological and social needs. There is a lack of research about how informal carers in Northern Ireland manage the role of caring for a patient who has experienced stroke, and what kind of support they need and receive. This literature review explores the experiences of informal carers providing stroke care in the home.

Thu, 07/20/2017 - 15:22