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Up to 40% of severely ill patients report at least an occasional desire to die, opening up not only to professionals but also to hospice volunteers and patients’ informal caregivers. Based on an existing, evaluated 2-day desire to die training for professionals, we intend to adapt the training for hospice volunteers and informal caregivers, both face-to-face and online and provide a preliminary evaluation.
Methods
Multi-method approach to (1) assess needs regarding content and form for (online) trainings for hospice volunteers and formats for informal care givers using online focus groups and (additional) individual interviews, (2) adapt existing training materials for both groups accompanied by expert discussion, and (3) pilot and evaluate the (online) trainings and formats through (online) surveys.
Results
In an online focus group with n = 4 informal caregivers and n = 2 additional online interviews, participants reported wishes for form (e.g. short formats in plain language) and content (e.g. needs in relation to health professional and patient). The n = 6 hospice volunteers also wished for form (e.g. plain language) and content (e.g. volunteer role). Results were implemented in (a) a volunteer adaptation of the training, e.g. with target-group-specific case studies and (b) the development of an online format for informal caregivers. For evaluation, we conducted (a) 2 face-to-face trainings for hospice volunteers (n = 14 and n = 20) and (b) 2 online formats for informal caregivers (n = 7 and n = 13). Both groups benefited strongly from participation.
Significance of results
Hospice volunteers and informal caregivers deal with patients’ desires to die – often without being adequately prepared. Through (online) trainings and formats, their awareness and self-confidence regarding desire to die can increase. It is therefore of high relevance to meet the demand for easily accessible and target group specific (online) trainings on dealing with desire to die.
Hospice volunteers often encounter questions related to spirituality. It is unknown whether spiritual care receives a corresponding level of attention in their training. Our survey investigated the current practice of spiritual care training in Germany.
Method:
An online survey sent to 1,332 hospice homecare services for adults in Germany was conducted during the summer of 2012. We employed the SPSS 21 software package for statistical evaluation.
Results:
All training programs included self-reflection on personal spirituality as obligatory. The definitions of spirituality used in programs differ considerably. The task of defining training objectives is randomly delegated to a supervisor, a trainer, or to the governing organization. More than half the institutions work in conjunction with an external trainer. These external trainers frequently have professional backgrounds in pastoral care/theology and/or in hospice/palliative care. While spiritual care receives great attention, the specific tasks it entails are rarely discussed. The response rate for our study was 25.0% (n = 332).
Significance of results:
A need exists to develop training concepts that outline distinct contents, methods, and objectives. A prospective curriculum would have to provide assistance in the development of training programs. Moreover, it would need to be adaptable to the various concepts of spiritual care employed by the respective institutions and their hospice volunteers.
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