Management

Asthma remains the leading cause of chronic respiratory illness among Native Hawaiian children 0 to 17 years in Hawai'i. The National Asthma Education and Prevention Program (NAEPP) established asthma management guidelines which includes medical assessment and monitoring, education in partnership with the caregiver, control of environmental triggers, and medication adherence (National Asthma Education Prevention Program [NAEPP], 2007). However, these guidelines do not consider the worldview, health beliefs, and cultural practices of caregiver, child, and family.

Zellweger spectrum disorders (ZSD) are rare, debilitating genetic diseases of peroxisome biogenesis that affect multiple organ systems and present with broad clinical heterogeneity. Although many case studies have characterized the multitude of signs and symptoms associated with ZSD, there are few reports on the prevalence of symptoms to help inform the development of meaningful endpoints for future clinical trials in ZSD.

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.

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.

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.

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.

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.

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).

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.

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.