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Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4–User testing: interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia. [ABSTRACT FROM AUTHOR]

To encourage citizens to plan their end-of-life care to protect their autonomy, Congress passed the Patient Self-Determination Act (PSDA) in 1990. Under the PSDA, all Medicare/Medicaid-funded agencies are required to ask if all the patients, upon admission, have advance directives (ADs). If they have not formulated an AD, agencies need to inform that they have a right to do so and provide them with the written information. Although this is required by law, there is no universal procedure or set standard approach to deliver the information to patients in these agencies. It is often unclear who provides and explains information on ADs, and what materials are provided. The purpose of this study was to understand the procedures and challenges presented in the delivery of information about ADs in agencies in response to the PSDA requirements. Using a case study approach, semi-structured interviews with personnel in nine agencies were analyzed and three overarching themes were identified: organizational procedures, staff interactions, and staff perceptions. The findings indicated that there is a need for AD-specific training for staff responsible for delivering AD information to their clients. Implementation of a formalized procedure/guidelines for information delivery would be helpful to maintain quality standards across agencies. [ABSTRACT FROM AUTHOR]

The article reports a study which was conducted to examine paramedics’ attitudes towards advance directives and end-of-life care. The results demonstrate that more dialogue is needed in emergency medical and palliative care issues. The paramedics indicated that improved guidelines on end-of-life decisions and the termination of cardiopulmonary resuscitation in palliative care patients may be essential. Paramedics do not feel adequately trained in end-of-life care and advance directives.