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Supporting self-care of long-term conditions in people with dementia: A systematic review

Background: Long-term conditions are common in people living with dementia; their self-management is an important determinant of wellbeing. Family carers often support or substitute self-care activities, and act as proxies for self-management, as dementia progresses. Objectives: To conduct the first systematic review of how management of long-term conditions in people with dementia is best enabled and supported, including factors that facilitate or inhibit self-management and management by a proxy. Design: Systematic review.

Tue, 06/28/2022 - 17:01

Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study

Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use.

Mon, 02/21/2022 - 10:29

A Qualitative Exploratory Study of Informal Carers’ Experiences of Identifying and Managing Oral Pain and Discomfort in Community-Dwelling Older People Living with Dementia

Increased prevalence of dementia and poor oral health in older people is associated with more people living with dementia who experience oral pain and discomfort. However, little is known about how informal carers manage oral pain for people living with dementia in the community. This study aimed to explore informal carers' experiences of identifying and managing oral pain and discomfort in people living with dementia, and barriers and enablers they encountered.

Wed, 04/03/2019 - 16:15

Shared decision-making in dementia care planning: barriers and facilitators in two European countries

Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands.

Wed, 10/31/2018 - 14:17

Managing carer stress: an evaluation of a stress management programme for carers of people with dementia

Examines the effect of carer stress management using the Carers' Checklist (Hodgson et al 1998) as a measure of outcome. Pre-course and post-course questionnaires were used with carers, who agreed to attend a structured stress management course. The carers who attended demonstrated a better awareness and understanding of stress and its management following the course. Positive measures of outcome were also determined by a decrease in the carers' rating in frequency of dementia-related problems, carer burden of dementia-related problems and overall carer burden.

Thu, 07/20/2017 - 15:22

Issues of power in service user and carer involvement: partnership, processes and outcomes

Our experience of partnership working on a Scottish project on service user and carer involvement in social work education has been a deeply politicising one. First-hand encounters with power enacted at various sites of service user and carer involvement across national, institutional and local university levels have demonstrated to us that 'partnership working that pushes at the orthodox structures of power is difficult' (Barnes et al., 2006, p. 434).

Thu, 07/20/2017 - 15:17

Broadening the definition of leadership: active citizens as leaders of change

The term leadership has been often applicable within the work domain, where development programmes are aimed at managers and lead organisations. However the government has recognised that changes in public services require the collaboration of many stakeholders working together in partnership and has placed at the core of its policies the need to include users and carers.

Thu, 07/20/2017 - 15:15

A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services

The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health.

Thu, 07/20/2017 - 15:12

Cognitive-behavioural therapy for the management of sickle cell disease pain: identification and assessment of costs

Objective. The aim of the present study was to investigate the economic validity of using a psychological intervention in the management of sickle cell disease (SCD). Thomas et al . ( Br J Health Psychol 1999; 4: 209-29) concluded that cognitive-behaviour therapy (CBT) appears to be immediately effective for the management of SCD pain in terms of reducing psychological distress pain as well as improving coping. Method. The costs of management of SCD were evaluated using a societal viewpoint.

Thu, 07/20/2017 - 15:11

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