BMC palliative care
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BMC palliative care · Mar 2016
When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.
Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. ⋯ Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.
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BMC palliative care · Mar 2016
The use of reflective diaries in end of life training programmes: a study exploring the impact of self-reflection on the participants in a volunteer training programme.
A training programme was developed and delivered to a cohort of volunteers who were preparing for a unique role to provide companionship to dying patients in the acute hospital setting. This comprehensive programme aimed to provide an opportunity for participants to fully understand the nature and responsibilities of the role, whilst also allowing sufficient time to assess the qualities and competencies of participants for their ongoing volunteering role. Participants completed reflective diaries throughout the training course to record their ongoing thoughts and feelings. The purpose of this paper is to present a phenomenological analysis of these entries to understand participants' experiences, perceptions and motivations. ⋯ The participants in this study demonstrated that they were able to use the diaries as an appropriate medium for reflection. Their reflections were also instrumental in the ongoing revision and development of the training programme. Analysis of their entries illustrated that the diaries could provide the opportunity for a reappraisal of their world view and personal philosophy around death and dying. Further research is undoubtedly required, however this paper suggests that self-reflection in this way, supports preparation in honing the appropriate attitudes and qualities required to work in this role.
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BMC palliative care · Feb 2016
The wish to die among palliative home care clients in Ontario, Canada: A cross-sectional study.
In the pursuit to provide the highest quality of person centered palliative care, client preferences, needs, and wishes surrounding end of life should be used to inform the plan of care. During a clinical assessment for care services, clients may voluntarily express a 'wish to die' either directly to the clinician or it may be indirectly reported second-hand to the clinician through an informal caregiver or family member. This is the first study using data gathered from the interRAI Palliative Care Assessment instrument (interRAI PC) to examine socio-demographic, clinical, and psycho-social factors of palliative home care clients with the voluntary expression of a 'wish to die now'. Factors associated with the risk for depression within this group were also identified. Awareness and understanding of clients who express the 'wish to die' is needed to better tailor a person-centered approach to end-of-life care. ⋯ When clients voluntary express a wish to die clinicians should take notice and initiate follow-up to better understand the context of this meaning for the individual. Clients who expressed a 'wish to die' did not all experience pain, depression, and psychological distress suggesting an individualized approach to care management be taken.
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BMC palliative care · Feb 2016
Multicenter StudyValidity, reliability and responsiveness to change of the Italian palliative care outcome scale: a multicenter study of advanced cancer patients.
There is an increasing requirement to assess outcomes, but few measures have been tested for advanced medical illness. We aimed to test the validity, reliability and responsiveness of the Palliative care Outcome Scale (POS), and to analyse predictors of change after the transition to palliative care. ⋯ Both the patient self-assessed and professional POS versions are valid and with an acceptable internal consistency. POS detected significant clinical improvements during palliative care, at a time when patients are usually expected to deteriorate. These results suggest that there is room for substantial improvement in the management of patients with advanced disease, across all key domains-symptoms, psychological, information, social and spiritual.
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BMC palliative care · Feb 2016
Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study.
Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice. ⋯ Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study.