Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

The psychosocial needs of students conducting research with patients and their families in advanced cancer and palliative care: A scoping review.

OBJECTIVE: The objective of this article was to explore the extent of the scientific literature and evidence base about the psychosocial needs of students conducting research in the fields of advanced cancer and palliative care. METHOD: A scoping review was conducted in major scientific databases. English-language articles on the topic of interest were retained if they were published in peer-reviewed journals between 1995 and 2013. RESULTS: A total of 3,161 references were screened, and 7 were retained for analysis. Only two articles were empirical studies involving the collection of primary empirical data. The remaining ones were commentaries and personal reflections. While there is a near absence of empirical research about the psychosocial needs of students, several commentaries suggest that students in this field have a high need for support. Three themes were identified in the limited literature retrieved: (1) the importance of proper training and supervision; (2) the availability of emotional support structures; and (3) the use of effective and deliberate self-care strategies. SIGNIFICANCE OF RESULTS: This scoping review demonstrates that little is known about the psychosocial needs of students conducting research in advanced cancer and palliative care. However, what is clear is that there is a large emotional impact on student researchers engaged in this type of work. Adequate training and support is needed to promote students' health and well-being, encourage retention of students, and foster high-quality studies. More empirical data are needed to better understand the experiences of students conducting this type of research and to ensure the sustainability of training and research in this field.

Family members' experiences caring for patients with advanced head and neck cancer receiving tube feeding: a descriptive phenomenological study.

CONTEXT: Head and neck cancer patients with dysphagia frequently require tube feeding. Family members are often involved in caring for such patients but feel ill prepared to do so. Health professionals are in a key position to support family members who undertake caregiving responsibilities. The ability to provide support requires that the experiences of family caregivers (FCs) are well understood; however, few studies examining these experiences have been conducted. To address this gap, research is needed that examines and describes the caregiving experience from the perspective of family members themselves. Such work will provide an empirical base to guide health professionals' practice with FCs. OBJECTIVES: To explicate the lived experience of caring for a dysphagic relative with advanced head and neck cancer receiving tube feeding. METHODS: A descriptive phenomenological approach was used. Six FCs participated in two in-depth interviews each. Spiegelberg's three-step approach guided data analysis. RESULTS: The essence of FCs' experience was "negotiating a new normal" and includes the themes of 1) negotiating changing roles, 2) negotiating an altered lifestyle, 3) negotiating ways of coping, and 4) negotiating the meaning of the feeding tube. Themes 1 and 2 are reported on here. CONCLUSION: FCs experience significant challenges. Study findings provide direction for health professionals who work with FCs and underscore the need for future research geared toward developing and testing psychoeducational interventions aimed at supporting FCs in the important and difficult caregiving work they do.

Psychosocial care of patients with head and neck cancer.

OBJECTIVES: To identify the psychosocial challenges experienced by individuals with head and neck cancer and their family caregivers and discuss future research opportunities in the areas of psychosocial nursing care for this patient population. DATA SOURCES: Published research articles, abstracts, book chapters, literature reviews. CONCLUSION: Patients with head and neck cancer experience profound functional and visible changes as a result of the disease and treatment. Such changes have a significant psychosocial impact on these patients and their families. A rehabilitative approach within a palliative framework of care is necessary to adequately meet the complex needs of these patients and their families. IMPLICATIONS FOR NURSING PRACTICE: Nurses are in a key position to provide support to patients with head and neck cancer and their families. Nurses need to recognize the significant psychosocial challenges that individuals with head and neck cancer face, and should be encouraged to integrate psychosocial screening, assessment, and intervention into the overall plan of care.

Management of dysphagia in advanced oropharyngeal cancer.

Individuals with advanced oropharyngeal cancer often experience dysphagia as a result of their illness and its treatment. Research consistently demonstrates that dysphagia and difficulty with oral intake have many implications, including a negative impact on quality of life. Nurses are in a key position to provide support and initiate appropriate interventions for individuals with dysphagia. Using the Human Response to Illness model (Mitchell et al, 1991) as an organising framework, this paper presents a critical review of the empirical literature regarding dysphagia in individuals with advanced oropharyngeal cancer that will: i) provide the reader with a comprehensive understanding of dysphagia; ii) identify current gaps in our knowledge; and iii) establish the foundation for appropriate evidence-based interventions to optimise functioning and quality of life in this patient population.