Care planning

Objectives: Describe the advance care planning communication preferences of children and adolescents and young adults (AYAs) with serious illness and their families. Describe multidisciplinary clinicians' current approach to advance care planning communication as well as perceived facilitators and barriers to initiating advance care planning discussions with AYAs and parents of children with serious illness. Discuss opportunities for further research to improve advance care planning communication for children and AYAs with serious illness and their families.

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The Future Care Road Map (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements.

Purpose: To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. Design and Methods: In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver.

Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security.

Lifelong couple Brian and Olive live in specialist supported accommodation. Brian has been Olive’s carer since she developed dementia. The housing complex where they live is managed as a community in which each individual is valued for the contribution they can make. The manager explains how important it is for carers as well as the person with dementia to maintain their individual identity and role as partner. The value of having a flexible, responsive individual care plan is also emphasised in the film.

For the past 15 years a central theme of government health-care policy has been to encourage the health service to change the way it relates to those who use it. Recent health policy documents such as Our National Health: A plan for action, a plan for change (Scottish Executive, 2000) emphasise a more integrated way of working that reflects co-operative partnerships.

This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes.

A study by the National Institute for Social Work suggests that estimates can be made about the length of time that a person with dementia will need community and long term care services. This can be done based on an assessment of the severity of dementia at the time of the community care assessment. The author highlights the need for an appraisal of local old age psychiatry services and eligibility criteria, and the importance of monitoring carers' ability and willingness to provide care.

In this fourth of five articles on developing a benchmarking tool for person-centred care, Caroline Baker, Paul Edwards and Tracy Packer describe the last two factors: carer involvement and organisational strategy.

The present authors have developed a model for assessing caregiving-related problems and needs, the Economic, Social, Psychological and Educational Requirements Table (ESPERT). The model was based on an analysis of the international literature concerning caregiving-related problems, and current specific European and Italian legislation, as well as the authors’ own research results (which also permitted them to design a specific instrument for the general assessment of caregivers).