J Palliat Care
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The provision of some form of bereavement services is an integral part of any pediatric hospice program. The Canuck Place hospice program has offered bereavement services since it began in 1995. A mixed-method evaluation of the impact of the Canuck Place program on the families it served during its first two-and-a-half years of operation was conducted. ⋯ Findings indicated that the follow-up component of the program was well-received by family members. When assessing their group experiences, children and parents most appreciated the support and understanding they received, the freedom to express themselves, a diminished sense of isolation, and the normalization of their emotions. Practical considerations when offering bereavement support groups are discussed in this paper.
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Pediatric palliative care requires the orchestrated efforts of a multidisciplinary care team of medical staff, nursing, psychosocial staff, and other healthcare professionals. Augmenting this team are support staff including financial counsellors, volunteers, secretaries, and others not involved in the direct administration of medical services. Prior research in palliative care has studied the perceptions, training, and professional resources of medical staff and social workers, but neglected to investigate such factors in support staff. ⋯ They indicated that such experiences had caused some adverse outcomes in their lives, and that few felt they had sufficient knowledge or training in palliative care. Our respondents voiced noteworthy opinions on symptom control, cultural issues, and spirituality pertinent to pediatric palliative care. Support staff play a key role in the palliative care team; research and resources need to be directed to educating, training, and supporting them.
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A postal survey was used to collect data from family members of deceased residents of six long-term care (LTC) facilities in order to explore end-of-life (EOL) care using the Family Perception of Care Scale. This article reports on the results of thematic analysis of family member comments provided while completing the survey. Family comments fell into two themes: (1) appreciation for care and (2) concerns with care. ⋯ The concerns with care theme included the subthemes: physical care, staffing levels, staff knowledge, physician availability, communication, and physical environment. This study identified the need for improvement in EOL care skills among LTC staff and attending physicians. As such, there is a need to implement continuing education to address these issues.
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Review Case Reports
Future echoes in pediatric palliative care: becoming sensitive to language.
As the specialty of pediatric palliative care emerges and develops, finding language to describe the complexity of "living while dying" is a challenge. Terms such as "life-limiting" and "life-threatening" are commonly used, but may not be sensitive enough to capture the experience of children and their families due to the restrictions and power at play in the history of the words "limit" and "threat". The search for the right words to use when speaking of children who are living while dying takes us to the language of metaphor and poetry that speaks to us in a different way, a way that encompasses not only the suffering, but also the dreams, hopes, and joys of children and families. Our preferred use of language also provides more than factual statements ever can, by speaking to the hearts and souls of health care providers who share precious moments with these families.