Qualitative research is becoming more common in pediatric palliative care and end-of-life care. The present article systematically reviews and summarizes qualitative and survey-based research on pediatric palliative and end-of-life care pertaining to the needs of patients and their families.
Twenty-one qualitative and survey-based studies published between 2000 and 2010 that met the selection criteria were retrieved from MEDLINE, PsycINFO, and CINAHL. All studies reported on the needs of patients and families receiving pediatric palliative and end-of-life care--from either the patient's, parent's, sibling's, or health care provider's perspective. Findings from these studies were aggregated using a metasummary technique.
Findings were extracted and grouped into the following 10 thematic domains pertaining to patient and family needs: interactions with staff, health care delivery and accessibility, information needs, bereavement needs, psychosocial needs, spiritual needs, pain and symptom management, cultural needs, sibling's needs, and decision making.
The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.
Table 1 summarizes the role of task force members and staff for each of the main tasks of the process of planning. The number of meetings required for each stage of the process is estimated in the last column. Planning for a regional palliative care services network is a process involving "hard" and "soft" elements. Hard elements involve the organizational structure, task force meetings, information/statistical data bases and the discrete tasks summarized in Table 1. These elements are well known, if nokt always well organized in practice. It is the "softer" elements that usually mean the difference between a dull bureaucratic exercise and a creative exchange of ideas and concepts with a vision for the future. Not to be underestimated is the critical role of group development in this process. The Task Force, supported by professional staff expertise and judgment, hopes to achieve a level of group development termed "synergy," that is, where the group outperforms (in terms of quality and quantity of work) its best individual member. Not a small feat, but critical to a successful planning exercise! Any regional planning implies a commitment to change. After all, new services will be added, some phased out, others revised, and others enhanced, resulting in changes in roles and responsibilities of providers. Change should not be greeted with disdain but viewed as a natural part of the environment in which we plan and provide services. A major advantage to the process of planning is that the level of support for change is already mobilized through the various stages of the process highlighted.(ABSTRACT TRUNCATED AT 250 WORDS)
People with cancer usually like to spend as much time as possible at home rather than in the hospital. Nurses have a pivotal role when patients are discharged to a unit in hospital or from hospital to the community health-care system.
To explore how frontline surgical nurses assess patients with gastrointestinal cancer receiving palliative care and the implications of their assessment and competency for the patients' discharge destinations.
A descriptive exploratory approach was used involving focus group interviews with a purposive sample of ten nurses from an inpatient gastroenterology surgical ward at a university hospital in Norway. Transcriptions of the interviews were analysed using Kvale and Brinkman's thematic approach.
Two overall themes emerged that had implications for the nurses' recommendations for optimal patient follow-up care after discharge: 'the complexity of and fluctuations in the patients' health status' and 'considering the competency of the nurses at the discharge destinations'.
This study illustrates surgical nurses' perspectives on the discharge destinations of cancer patients receiving palliative care. The findings have implications for initiatives aimed at providing more home-based palliative care.
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.