Supporting families in the context of adult traumatic brain injury

Families are fundamental to the wellbeing, quality of life and functional and social outcomes of individuals who sustain traumatic brain injury (TBI). However, the family is often vulnerable and at risk from the challenge of supporting an individual who has been left with long-term neurological disability. Considering the young population often affected, the resulting conditions can have significant emotional and financial burden for families and service providing for their long-term needs. The National Service Framework for Long-term Conditions acknowledges that the whole family is affected by neurological disability and it suggests that a 'whole-family' approach to managing TBI may be useful. This paper will argue that both family systems theory and family-centred care are frameworks that may be helpful in achieving the 'whole-family' approach in practice. However, future research is needed that will assess the efficacy of these and other approaches so that health-care services know the true value of any such intervention.N/

Using intervention mapping (IM) to develop a self-management programme for employees with a chronic disease in the Netherlands.

Contains fulltext : 87550.pdf (publisher's version ) (Open Access)BACKGROUND: Employees with a chronic disease often encounter problems at work because of their chronic disease. The current paper describes the development of a self-management programme based on the Chronic Disease Self-Management programme (CDSMP) of Stanford University to help employees with a chronic somatic disease cope with these problems at work. The objective of this article is to present the systematic development and content of this programme. METHODS: The method of intervention mapping (Bartholomew 2006) was used to tailor the original CDSMP for employees with a chronic somatic disease. This paper describes the process of adjusting the CDSMP for this target group. A needs assessment has been carried out by a literature review and qualitative focus groups with employees with a chronic disease and involved health professionals. On the basis of the needs assessment, the relevant determinants of self-management behaviour at work have been identified for the target population and the objectives of the training have been formulated. Furthermore, techniques have been chosen to influence self-management and the determinants of behaviour and a programme plan has been developed. RESULTS: The intervention was designed to address general personal factors such as lifestyle, disease-related factors (for example coping with the disease) and work-related personal factors (such as self-efficacy at work). The course consists of six sessions of each two and a half hour and intents to increase the self management and empowerment of employees with a chronic somatic disease. CONCLUSION: Intervention mapping has been found to be a useful tool for tailoring in a systematic way the original CDSMP for employees with a chronic somatic disease. It might be valuable to use IM for the development or adjusting of interventions in occupational health care

Consumer participation in designing community based consumer-directed disability care : lessons from a participatory action research-inspired project

User participation has been embraced worldwide as a means to provide better consumer outcomes in health and community care. However, methodologies to achieve effective consumer engagement at the programme design level have remained under-explored. The purpose of this study was to evaluate the impact of a Participatory Action Research (PAR)-inspired methodology used to develop a consumer-directed community care/individualised funding service model for people with disabilities. A retrospective analysis of case notes and internal reports for the first 6 years of an ongoing project were examined. The findings suggest that PAR methodologies need to take into account community development, group support, and capacity building as well as succession planning and risk management issues in order to facilitate the often lengthy policy and project development process. Drawing on these findings, this article discusses five lessons and their methodological implications for PAR in a health or social policy/programme design context. <br /