International journal of palliative nursing
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Children's hospices have the facilities to enable a child to remain at the hospice following their death until the time of the funeral if desired by the family. The use of cold bedrooms (or beds) to reduce the rate of the body's physical deterioration enables the family to have unrestricted access and close proximity to the child throughout the 24-hour period. ⋯ The study has methodological limitations but presents an investigation into the experiences of parents whose child has been cared for in a cold bedroom. These families all described the experience positively.
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Many children receiving hospice care are affected by inherited genetic conditions. To provide appropriate care, children's hospice nurses require knowledge and awareness of the issues faced by the child and their family along with the implications of having, or being at risk from, an inherited genetic condition. Little is currently known about the competence levels of children's hospice nurses to support these children and their families. ⋯ This study involved two stages: a single-page survey to children's hospice directors of nursing designed to determine the nature of children's hospice care provision in England and Wales. Second, a postal survey using a structured, self-administered questionnaire was sent to nursing staff in a sample of children's hospices in England and Wales. A total of 277 packs were sent to the hospices for distribution to children's nurses working in their employment. Likert scales were used to rate the importance of genetic activities relevant to children's hospices, and nurses' confidence in performing them. Demographic data were also collected. The results, the discussion of the findings and implications for practice will be discussed in part 2.
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Over 1 million people are living with HIV/AIDS in Uganda and there is a need for the provision of comprehensive palliative care. There is minimal literature with regard to the provision of palliative care in Uganda and there is no evaluation literature on the quality of palliative care education programmes. The aim of the study was to conduct an evaluation of a modular HIV/AIDS palliative care education programme undertaken in rural Uganda by the Mildmay Centre. ⋯ A perceived and reported impact was seen at the patient and community level, participant level, health facility and district levels. An increase in access to care by people living with HIV/AIDS was seen as stigma was reduced and the attitudes of health workers towards people living with HIV/AIDS improved. Strengths and weaknesses of the programme were identified along with recommendations for future programmes.
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This study aims to explore the potential for palliative care among people living with advanced chronic obstructive pulmonary disease (COPD). Individual semi-structured interviews (n=13) were conducted with people who had a diagnosis of advanced COPD and were on optimal tolerated drug therapy, with their breathing volume (forced expiratory volume at less than 30%) or were on long-term oxygen therapy or non-invasion ventilation. Participants raised concerns about the uncertain trajectory of the illness and reported unmet palliative care needs with poor access to palliative care services. ⋯ There was a wide acceptance that, medically, nothing more could be done. Findings also suggest that patients had unmet palliative care needs, requiring information and support. The research suggests the need for palliative care to be extended to all (regardless of diagnosis), with packages of care developed to target specific needs.