Administrators’ perspectives on end-of-life care for cancer patients in Japanese long-term care facilities

Purpose  

The purpose of this study was to clarify administrators’ perspectives on availability of recommended strategies for end-of-life (EOL) care for cancer patients at long-term care (LTC) facilities in Japan.     

Parents' experiences of handling oral anticancer drugs at home: ‘It all falls on me …’

Aim

The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting.

Methods

Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis.

Results

We found the following categories and subcategories: parents’ views on the provided information—lack of, too little or contradictory information, and parents’ preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming.

Conclusion

Parents need to be provided with accurate, timely, nonconflicting and repeated information—in different forms and in their mother tongue—on how to handle oral anticancer drugs at home.     

Evaluation of interprofessional relational coordination and patients’ perception of care in outpatient oncology teams

ABSTRACT

This pilot study was designed to measure teamwork and the relationship of teamwork to patient perceptions of care among 63 members of 12 oncology teams at a Cancer Centre in the Midwest. Lack of teamwork in cancer care can result in serious clinical errors, fragmentation of care, and poor quality of care. Many oncology team members, highly skilled in clinical care, are not trained to work effectively as members of a care team. The research team administered the Relational Coordination survey to core oncology team members—medical oncologists, nurse coordinators, and clinical secretaries—to measure seven dimensions of team skills (four relating to communication [frequency, timeliness, accuracy, and problem solving] and three relating to relationship [shared goals, shared knowledge, and mutual respect]) averaged to create a Relational Coordination Index. The results indicated that among the team member roles, nurse coordinator relational coordination indices were the strongest and most positively correlated with patient perception of care. Statistically significant correlations were intra-nurse coordinator relational coordination indices and two patient perception of care factors (information and education and patient’s preferences). All other nurse coordinator intra-role as well as inter-role correlations were also positively correlated, although not statistically significant.     

Using the lens of enablement to explore patients’ experiences of Nurse Practitioner care in the Primary Health Care setting

Background

Patient enablement is a patient-centred concept reflecting a patient’s ability to cope, understand and manage their own health. It can be used as a measure of the quality of care and has been linked with improved patient outcomes. While there have been studies into patient enablement following consultations with General Practitioners (GPs) and practice nurses, Nurse Practitioners’ (NPs) role in enabling patients remains unexplored.

Psychometric evaluation of the Persian version of the Templer’s Death Anxiety Scale in cancer patients

In this study, 398 Iranian cancer patients completed the 15-item Templer's Death Anxiety Scale (TDAS). Tests of internal consistency, principal components analysis, and confirmatory factor analysis were conducted to assess the internal consistency and factorial validity of the Persian TDAS. The construct reliability statistic and average variance extracted were also calculated to measure construct reliability, convergent validity, and discriminant validity. Principal components analysis indicated a 3-component solution, which was generally supported in the confirmatory analysis. However, acceptable cutoffs for construct reliability, convergent validity, and discriminant validity were not fulfilled for the three subscales that were derived from the principal component analysis. This study demonstrated both the advantages and potential limitations of using the TDAS with Persian-speaking cancer patients.     

Meeting the challenge: ICU-nurses’ experiences of lightly sedated patients

BackgroundSedation of intensive care patients is necessary for comfort and to implement appropriate treatment. The trend of sedation has gone from deep to light sedation. The topic is of interest to intensive care nursing because patients are generally more awake, which requires a different clinical approach than caring for deeply sedated patients.PurposeThe aim of this study was to describe intensive care unit (ICU) nurses experiences of caring for patients who are lightly sedated during mechanical ventilation.MethodsA qualitative approach was used. Semi-structured interviews with nine intensive care nurses were conducted. The interview texts were subjected to qualitative content analysis, resulting in the formulation of one main category and six sub-categories.FindingsThe nurses’ experience of lightly sedated patients was described as a challenge requiring knowledge and experience. The ability to communicate with the lightly sedated patient is perceived as important for ICU nurses. Individualised nursing care respecting the patients’ integrity, involvement and participation are goals in intensive care, but might be easier to achieve when the patients are lightly sedated.ConclusionThe results reinforce the importance of communication in nursing care. It is difficult however to create an inter-personal relationship, encourage patient involvement, and maintain communication with deeply sedated patients. When patients are lightly sedated, the nurses are able to communicate, establish a relationship and provide individualised care. This is a challenge requiring expertise and patience from the nurses. Accomplishing this increases the nurses satisfaction with their care. The positive outcome for the patients is that their experience of their stay in the ICU might become less traumatic.     

Informing the Australian government on AT policies: ARATA’s experiences

This article describes the development and dissemination of an evidence-based Policy Statement and Background Papers by the Australian Rehabilitation and Assistive Technology Association (ARATA). An experienced project team was engaged to conduct literature reviews and member consultations, develop resources and implement a targeted advocacy strategy that included a policy launch and meetings with government officials. The Policy Statement and Background Papers have enabled ARATA to represent the views of Assistive Technology (AT) Practitioners in consultations around the National Disability Insurance Scheme and other AT-related inquiries. In ARATA’s experience, developing a policy statement and disseminating it through a targeted advocacy strategy is an effective way for a not-for-profit professional organisation to influence government policy.

• Implications for Rehabilitation

• AT practitioners must consider political factors in working towards effective policies to support their practice.

• To be effective at a systemic level, AT practitioners must develop political awareness and an understanding of the drivers of policy.

• This case study provides a blueprint for AT practitioners and organisations in tackling policy change.

     

Natalizumab in the treatment of Crohn’s disease patients

Introduction: Amongst the available therapies for moderate to severe Crohn’s disease (CD) patients who are refractory to conventional therapy, anti-TNF blockers are the most effective biological treatment option. However, many patients experience a primary or secondary non-response to anti-TNF therapy, creating the need for alternative biological drugs that target different mechanisms of action and inflammatory pathways. Natalizumab, the first non-anti-TNF biological drug to be approved for treatment of CD patients, is a recombinant humanized antibody that targets the α₄-subunit of both α₄β₁ and α₄β₇ integrins, thus preventing activated leukocyte homing to the intestinal mucosa.

Areas covered: This article summarizes the pathophysiological background and the efficacy and safety data of natalizumab, as well as the regulatory issues surrounding it.

Expert opinion: Natalizumab represents an effective therapy for refractory CD patients. However, the rare but serious event of progressive multifocal leukoencephalopathy occurrence has compromised its widespread use. The subsequent advent of more specific anti-integrin drugs (i.e. vedolizumab) that carry a more favorable safety profile further reduces the clinical indications for natalizumab. The regulatory process for natalizumab distribution and monitoring in the US may provide a forum for discussion on how to optimally manage use of drugs that offer clinical benefits to patients, while minimizing associated risks.     

A ‘rite of passage?’: Bullying experiences of nursing students in Australia

Background

Bullying in nursing remains an unacceptable international phenomenon and one that is widely reported in the literature. Recently, reports of bullying and harassment of nursing students have been increasing.

Hospital–community interface: A qualitative study on patients with cancer and health care providers' experiences

BackgroundPatients with cancer must deal with complex and fragmented healthcare systems in addition to coping with the burden of their illness. To improve oncology treatment along the care continuum, the barriers and facilitators for streamlined oncologic care need to be better understood.PurposeThis study sought to gain insight into the hospital–community interface from the point of view of patients with cancer, their families, and health care providers on both sides of the interface i.e., the community and hospital settings.Methods and sampleThe sample comprised 37 cancer patients, their family members, and 40 multidisciplinary health care providers. Twelve participants were interviewed individually and 65 took part in 10 focus groups. Based on the grounded theory approach, theoretical sampling and constant comparative analyses were used.ResultsTwo major concepts emerged: “ambivalence and confusion” and “overcoming healthcare system barriers.” Ambiguity was expressed regarding the roles of health care providers in the community and in the hospital. We identified three main strategies by which these patients and their families overcame barriers within the system: patients and families became their own case managers; patients and health care providers used informal routes of communication; and nurse specialists played a significant role in managing care.ConclusionsThe heavy reliance on informal routes of communication and integration by patients and providers emphasizes the urgent need for change in order to improve coordinating mechanisms for hospital–community oncologic care.     

End-of-life palliative home care for children with cancer: A qualitative study on parents’ experiences

Background

There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.

Methods

The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.

Results

Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.

Conclusion

End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.     

Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance

Goals of work

Family caregivers play an important role in caring for cancer patients, but the impact of caregivers’ unmet needs on the quality of end-of-life (EOL) care they deliver and on their workplace performance are less understood.

Patients and methods

We identified 1,662 family caregivers of cancer patients who had died at any of 17 hospitals in Korea during 2004. The caregivers answered a telephone questionnaire about needs that were not met when they delivered terminal cancer care and how those unmet their needs affected their workplace performance; they also answered the Quality Care Questionnaire-End of Life (QCQ-EOL).

Results

Compared with caregivers who did not have unmet needs, caregivers who had unmet needs for symptom management, financial support, or community support showed poorer QCQ-EOL scores (P?<?0.01). Caregivers who had unmet needs for financial support (adjusted odds ratio (aOR)?=?7.55; 95% confidential interval (CI) 3.80–15.00), psychosocial support (aOR?=?6.24; 95% CI 2.95–13.05), symptom management (aOR?=?3.21; 95% CI 2.26–4.54), community support (aOR?=?3.82; 95% CI 2.38–6.11), or religious support (aOR?=?4.55; 95% CI 1.84–11.26) were more likely to experience work limitations. Caregivers of patients receiving conventional hospital care were more likely to have unmet needs for symptom management (aOR?=?1.21; 95% CI 1.00–1.47), psychosocial support (aOR?=?1.99; 95% CI 1.37–2.88), and religious support (aOR?=?1.73; 95% CI 1.08–2.78) than those of patients receiving palliative hospice care.

Conclusions

Caregivers’ unmet needs negatively affected both the quality of EOL care they delivered and their workplace performance. More investment in caregiver support and public policies that meet caregiver needs are needed, and hospice use should be encouraged.     

Advanced lung cancer patients’ experience with continuity of care and supportive care needs

As cancer care becomes increasingly complex, the ability to coordinate this care is more difficult for health care providers, patients and their caregivers alike. Despite the widely recognized need for improving continuity and coordination of care, the relationship of continuity of care with patient outcomes has yet to be elucidated. Our study’s main finding is that the Continuity and Coordination subscale of the widely used Picker System of Ambulatory Cancer Care Survey is able to distinguish between lung cancer patients with unmet supportive care needs and those without. Specifically, this study shows a new association between this widely implemented continuity and coordination survey and the ‘psychological needs’ domain, as well as the ‘health system and information’ domains of supportive care needs. The finding provides support for the idea that interventions to improve continuity may impact tangible indicators of patient care such as supportive care needs being met. The study focuses attention on continuity of care as an important aspect of optimizing outcomes in cancer care.     

Designing new collaborative learning spaces in clinical environments: experiences from a children’s hospital in Australia

Abstract

Hospitals are complex places that provide a rich learning environment for students, staff, patients and their families, professional groups and the community. The “new” Royal Children's Hospital opened in late 2011. Its mission is focused on improving health and well-being of children and adolescents through leadership in healthcare, research and education. Addressing the need to create “responsive learning environments” aligned with the shift to student-centred pedagogy, two distinct learning environments were developed within the new Royal Children’s Hospital; (i) a dedicated education precinct providing a suite of physical environments to promote a more active, collaborative and social learning experience for education and training programs conducted on the Royal Children’s Hospital campus and (ii) a suite of learning spaces embedded within clinical areas so that learning becomes an integral part of the daily activities of this busy Hospital environment. The aim of this article is to present the overarching educational principles that lead the design of these learning spaces and describe the opportunities and obstacles encountered in the development of collaborative learning spaces within a large hospital development.