No second chance: the experiences of junior neonatal nurses in providing end-of-life care for babies and families in the NNU

Background

An infant’s death is acutely stressful for parents and professionals. Little is known about junior nurses’ experiences providing end-of-life care in Neonatal Units (NNU).

Objectives

To better understand junior nurses’ experiences providing end-of-life care in NNU, the study explored the challenges and opportunities inherent in their practice relating to providing such care to babies and their families.

Methods

Neonatal nurses (n=12) with less than 3 years’ experience who were undergoing a neonatal education programme participated. Two focus groups were convened each with 6 nurses. The Ethics Committee at the relevant University approved the study. Nominal Group Technique (NGT) was used in the focus groups to build consensus around the challenges faced by junior nurses, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision making whilst secondary analysis involved thematic analysis.

Results

The study identified the pressures these nurses felt in having only one chance to ‘get it right’ for the infants and their families. They perceived the need for further ‘education and training’ highlighting that improved education provision would include both additional courses and internal training sessions. Greater ‘support’ from mentors themselves more experienced in this aspect of care within the NNU was identified as important in addressing issues around confidence building and skill development.

Conclusions

The results highlight junior nurses’ need for specific education and mentorship around end-of-life care for babies. This presentation will outline the implications for practice, education and further research.

Cabazitaxel for Hormone-Relapsed Metastatic Prostate Cancer Previously Treated With a Docetaxel-Containing Regimen: An Evidence Review Group Perspective of a NICE Single Technology Appraisal

As part of its single technology appraisal (STA) process, the National Institute for Health and Care Excellence (NICE) invited the company that manufactures cabazitaxel (Jevtana(®), Sanofi, UK) to submit evidence for the clinical and cost effectiveness of cabazitaxel for treatment of patients with metastatic hormone-relapsed prostate cancer (mHRPC) previously treated with a docetaxel-containing regimen. The School of Health and Related Research Technology Appraisal Group at the University of Sheffield was commissioned to act as the independent Evidence Review Group (ERG). The ERG produced a critical review of the evidence for the clinical and cost effectiveness of the technology based upon the company's submission to NICE. Clinical evidence for cabazitaxel was derived from a multinational randomised open-label phase III trial (TROPIC) of cabazitaxel plus prednisone or prednisolone compared with mitoxantrone plus prednisone or prednisolone, which was assumed to represent best supportive care. The NICE final scope identified a further three comparators: abiraterone in combination with prednisone or prednisolone; enzalutamide; and radium-223 dichloride for the subgroup of people with bone metastasis only (no visceral metastasis). The company did not consider radium-223 dichloride to be a relevant comparator. Neither abiraterone nor enzalutamide has been directly compared in a trial with cabazitaxel. Instead, clinical evidence was synthesised within a network meta-analysis (NMA). Results from TROPIC showed that cabazitaxel was associated with a statistically significant improvement in both overall survival and progression-free survival compared with mitoxantrone. Results from a random-effects NMA, as conducted by the company and updated by the ERG, indicated that there was no statistically significant difference between the three active treatments for both overall survival and progression-free survival. Utility data were not collected as part of the TROPIC trial, and were instead taken from the company's UK early access programme. Evidence on resource use came from the TROPIC trial, supplemented by both expert clinical opinion and a UK clinical audit. List prices were used for mitoxantrone, abiraterone and enzalutamide as directed by NICE, although commercial in-confidence patient-access schemes (PASs) are in place for abiraterone and enzalutamide. The confidential PAS was used for cabazitaxel. Sequential use of the advanced hormonal therapies (abiraterone and enzalutamide) does not usually occur in clinical practice in the UK. Hence, cabazitaxel could be used within two pathways of care: either when an advanced hormonal therapy was used pre-docetaxel, or when one was used post-docetaxel. The company believed that the former pathway was more likely to represent standard National Health Service (NHS) practice, and so their main comparison was between cabazitaxel and mitoxantrone, with effectiveness data from the TROPIC trial. Results of the company's updated cost-effectiveness analysis estimated a probabilistic incremental cost-effectiveness ratio (ICER) of £45,982 per quality-adjusted life-year (QALY) gained, which the committee considered to be the most plausible value for this comparison. Cabazitaxel was estimated to be both cheaper and more effective than abiraterone. Cabazitaxel was estimated to be cheaper but less effective than enzalutamide, resulting in an ICER of £212,038 per QALY gained for enzalutamide compared with cabazitaxel. The ERG noted that radium-223 is a valid comparator (for the indicated sub-group), and that it may be used in either of the two care pathways. Hence, its exclusion leads to uncertainty in the cost-effectiveness results. In addition, the company assumed that there would be no drug wastage when cabazitaxel was used, with cost-effectiveness results being sensitive to this assumption: modelling drug wastage increased the ICER comparing cabazitaxel with mitoxantrone to over £55,000 per QALY gained. The ERG updated the company's NMA and used a random effects model to perform a fully incremental analysis between cabazitaxel, abiraterone, enzalutamide and best supportive care using PASs for abiraterone and enzalutamide. Results showed that both cabazitaxel and abiraterone were extendedly dominated by the combination of best supportive care and enzalutamide. Preliminary guidance from the committee, which included wastage of cabazitaxel, did not recommend its use. In response, the company provided both a further discount to the confidential PAS for cabazitaxel and confirmation from NHS England that it is appropriate to supply and purchase cabazitaxel in pre-prepared intravenous-infusion bags, which would remove the cost of drug wastage. As a result, the committee recommended use of cabazitaxel as a treatment option in people with an Eastern Cooperative Oncology Group performance status of 0 or 1 whose disease had progressed during or after treatment with at least 225 mg/m(2) of docetaxel, as long as it was provided at the discount agreed in the PAS and purchased in either pre-prepared intravenous-infusion bags or in vials at a reduced price to reflect the average per-patient drug wastage.

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.

Myths and Realities of Inter-professional Working

Introduction: Childhood cancers are rare and community based health care professionals have limited experience in caring for these children and often even less experience in providing their palliative care. It is well recognised that the provision of palliative care falls beyond the remit of any one profession, thus inter professional working is the standard model. This qualitative study aims to examine the experiences of the range of health care professionals involved in providing palliative care at home for children with cancer, focusing on how knowledge is exchanged; the level of communication and support both interprofessionally and at the community/specialist interface. It also aims to examine interprofessional collaboration in palliative care; identifying healthcare professional's perceptions of problems involved, interprofessional boundaries, specific areas of the organisation or provision of care that could be enhanced through changes in practice, support issues and the educational needs of health professionals. Methods The study involves three types of data collection; in-depth interviews, facilitated case discussion (FCD) and field notes from up to 20 cases (a "case" refers to the provision of palliative care to one child). Cases are selected from children who were treated at one regional childhood caner centre. For each case the community based health care professionals (for example the GP, community nurse or health visitor) involved in the care of the child at home are invited to participate in a one-to-one tape recorded in-depth interview followed by a group discussion in the form of a FCD. Field notes are completed following each interview. Data analysis follows a grounded theory approach. The term "social worlds theory" (SWT) his used to define a type of social organisation with no fixed or formal boundaries (such as membership boundaries), for example the range of health professionals that work together to provide palliative care. The boundaries of SW's are determined by the interaction and communication between recognised organisations, such as community nursing teams and general practitioners. SWT examines encounters between different professional groups and can be used to extend knowledge in both the organisation (for example general practice) and the content of what is being provisioned (for example, palliative care). The use of SWT in the analysis of the data is through examining the ethos of the different professions and the associated individual approaches to palliative care, exploring how this determines their roles in the provision of palliative care. Results 10 cases have so far been completed: 47 1:1 interviews (with a range of between 2-7 health care professionals being involved in each case): ( 9 x GP, 19 x CCN, 4 x DN, 3 x HV, 1 x HV assistant 7 x paediatric palliative care nurses, 1 x home support worker, 1 x OT, 1 x physiotherapist, 1 x community paediatrician) and 5 x FCD. The range of participants in the FCDs reflected that of the individual interview sampler. Data obtained to date gives clear insight into the personal experience of the individual health care professional in providing palliative care. Two themes emerging from the data will be focused upon: the continuity of care provision throughout treatment and palliation and the emotional burden experiences by the health care professional. Conclusions SWT can provide a useful framework in examining the social worlds of a disparate group of health care professionals working together for the first and maybe, the only time. A wide variation in the continuity of care provision has been found not only between professions, but also within professions. The emotional burden is evident across the professions.

Implementation science to expand an mHealth intervention for improving retention in care for women living with HIV and their children

Thesis (Ph.D.)--University of Washington, 2016-08

Evaluating the efficiency of community-based HIV testing and counseling strategies in sub-Saharan Africa

Thesis (Ph.D.)--University of Washington, 2016-08

Pathologies of Patriarchy: Death, Suffering, Care and Coping in the Gendered Gaps of HIV/AIDS Interventions in Nigeria

Thesis (Ph.D.)--University of Washington, 2016-08

The role of emotions in value creation for families in pediatric health care

The purpose of this study was to analyze emotions related to a child’s critical illness from the perspective of the family and discuss the link those emotions might form with value creation. High quality service is of paramount importance in hospital care, especially when a child is diagnosed with critical illness. Through the analysis of patient family emotions and their triggers, the study was aiming to deepen the understanding of value creation for customer. Therefore, the research sought to find answers to the following three sub-questions: 1. What are the emotions experienced? 2. What triggers them? 3. How are the emotions linked to amelioration or aggravation of value for patient and family? The theoretical background of this research is built on two core concepts: emotions and value creation. As both concepts are wide and multifaceted, the research concentrates on viewing emotions from the applicable cognitive angle, identifying and categorizing emotions in a general level. Value creation is studied from the service perspective, discussing the possible relations between emotions and value creation. Moreover, the suitability of views regarding customer value co-creation to health care encounters is analyzed. Qualitative approach was selected as the most appropriate methodology for conducting the empirical research. The empirical data was collected from public blogs, for which a total of 18 blogs were reviewed. Five blogs were selected for the analysis, which had the intent of identifying the emotions experienced by patient families and deepening the knowledge of their role in value creation during health care service encounters. The empirical study of this research discovered a wide range of positive and negative emotions, which denotes that a severe life situation does not prevent the feeling of positive emotions. Furthermore, by combining the empirical findings to the theoretical background, this study concludes that recognizing and treating the patient family as a partner and value creator is essential. The high quality technical aspect of care is vital, but it is not the sole attribute for service quality, as the interpersonal communication plays a large role in the customer’s overall assessment of the health care performance. The patients and their families largely evaluate the service encounter based on their perceptions, thus emotions play a significant role. Depending on the service experience, value maybe created or destructed. Hence, this study posits emotion at the core of the service encounter, indicating towards the importance of active assessment of customer perceptions and the recognition of the emotional states

Perspective of nurses involved in an action-research study on the changes observed in care provision: results from a focus group

Background According to the Nursing Role Effectiveness Model, the structural components (nurses, patients, organizational variables) may directly BMC Health Services Research 2016, Volume 16 Suppl 3 Page 41 of 132 or indirectly influence the care outcomes through the process (actions developed by the nurses). Objectives: To identify the changes that, from the nurses' perspective, occurred during the provision of care to patients with peripheral venous catheters (PVCs) between the first and the second phase of the Action-Research (AR) study, and the components that influenced these changes. Methods During the second phase of the AR study (December, 2011), a focus group composed of six nurses was held at a medicine unit of a central hospital. A script was used with six open-ended questions. All ethical procedures were followed. Results Positive changes in nursing care provision to patients with PVCs were identified related to the type of dressing used, patient monitoring, aseptic care, and infusion rate. The nurses believed that some variables of the organizational component influenced those changes, such as the centralization of the material used for catheterization or the availability of materials, such as transparent dressings. The nurses also valued the following aspects: knowledge of the research findings of the first phase; training sessions on the topic; and, above all, the nurses' engagement throughout the process of change in care provision. Conclusions Considering the model of analysis used, we found that the changes identified in nursing care resulted from several factors, with the engagement of the professionals themselves in the change process being considered a key aspect.

Development and preliminary psychometric properties of the Care Experience Feedback Improvement Tool (CEFIT).

Objective To develop a structurally valid and reliable, yet brief measure of patient experience of hospital quality of care, the Care Experience Feedback Improvement Tool (CEFIT). Also, to examine aspects of utility of CEFIT. Background Measuring quality improvement at the clinical interface has become a necessary component of healthcare measurement and improvement plans, but the effectiveness of measuring such complexity is dependent on the purpose and utility of the instrument used. Methods CEFIT was designed from a theoretical model, derived from the literature and a content validity index (CVI) procedure. A telephone population surveyed 802 eligible participants (healthcare experience within the previous 12 months) to complete CEFIT. Internal consistency reliability was tested using Cronbach's α. Principal component analysis was conducted to examine the factor structure and determine structural validity. Quality criteria were applied to judge aspects of utility. Results CVI found a statistically significant proportion of agreement between patient and practitioner experts for CEFIT construction. 802 eligible participants answered the CEFIT questions. Cronbach's α coefficient for internal consistency indicated high reliability (0.78). Interitem (question) total correlations (0.28–0.73) were used to establish the final instrument. Principal component analysis identified one factor accounting for 57.3% variance. Quality critique rated CEFIT as fair for content validity, excellent for structural validity, good for cost, poor for acceptability and good for educational impact. Conclusions CEFIT offers a brief yet structurally sound measure of patient experience of quality of care. The briefness of the 5-item instrument arguably offers high utility in practice. Further studies are needed to explore the utility of CEFIT to provide a robust basis for feedback to local clinical teams and drive quality improvement in the provision of care experience for patients. Further development of aspects of utility is also required.

Priorities for future intensive care research in the UK: results of a James Lind Alliance Priority Setting Partnership.

This James Lind Alliance (JLA) Priority Setting Partnership aimed to identify and prioritise unanswered questions about adult intensive care that are important to people who have been critically ill, their families, and the health professionals who care for them. Consensus techniques (modified Delphi and Nominal Group) were used to generate suggestions using online and postal surveys. Following verification and iterative editorial review, research topics were constructed from these suggestions. These topics were presented in a second online and postal survey for rating. A Nominal Group of 21 clinicians, patients and family representatives subsequently met to rank the most important research topics and produce a prioritised list. The project was coordinated by a representative Steering Group and independently overseen by the JLA. The initial survey and review of the literature generated over 1,300 suggestions. Preliminary editing and verification permitted us to encapsulate these suggestions within 151 research topics. Iterative review by members of the Steering Group produced 37 topic statements, subsequently rated by participants. Using the mode to determine importance, 19 topics were presented to the group from which a ‘top three’ intensive care research priorities were identified and a further nine topics were prioritised. By applying and adapting the JLA methodology to focus on an area of care rather than to a single disease, we have provided a means to ensure that patients, their families and professionals materially contribute to the prioritisation of intensive care research in the UK.

FAMILY CHARACTERISTICS, STATE PROGRAM EFFECTIVENESS, AND REPORT OF INADEQUATE CARE AMONG FAMILIES OF YOUNG CHILDREN WITH HEARING LOSS

Approximately 1.6 per 1,000 newborns in the U.S. are born with hearing loss. Congenital hearing loss poses a risk to their speech, language, cognitive, and social-emotional development. Early detection and intervention can improve outcomes. Every state has an Early Hearing Detection and Intervention program (EHDI) to promote and track screening, audiological assessments and linkage to early intervention. However, a large percentage of children are “lost to system (LTS),” meaning that they did not receive recommended care or that it was not reported. This study used data from the 2009-2010 National Survey of Children with Special Health Care Needs and data from the 2011 EHDI Hearing Screening and Follow-Up Survey to examine how 1) family characteristics; 2) EHDI program effectiveness, as determined by LTS percentages; and 3) the family conditions of education and poverty are related to parental report of inadequate care. The sample comprised 684 children between the ages of 0 and 5 years with hearing loss. The results indicated that living in states with less effective EHDI programs was associated with an increased likelihood of not receiving early intervention services (EIS) and of reporting poor family-centered communication. Sibling classification was associated with both receipt of EIS and report of unmet need. Single mothers were less likely to report increased difficulties accessing care. Poor and less educated families, assessed separately, who lived in states with less effective EHDI programs, were more likely to report non-receipt of EIS and less likely to report unmet need as compared to similar families living in states with more effective programs. Poor families living in states with less effective programs were more likely to report less coordinated care than were poor families living in states with more effective programs. This study supports the conclusion that both family characteristics and the effectiveness of state programs affect quality of care outcomes. It appears that less effective state programs affect disadvantaged families’ service receipt report more than that of advantaged families. These findings are important because they may provide insights into the development of targeted efforts to improve the system of care for children with hearing loss.

Using an end-of-life care pathway in acute stroke: a mixed methods study of decision-making and care experiences

Background: The evidence base on end-of-life care in acute stroke is limited, particularly with regard to recognising dying and related decision-making. There is also limited evidence to support the use of end-of-life care pathways (standardised care plans) for patients who are dying after stroke. Aim: This study aimed to explore the clinical decision-making involved in placing patients on an end-of-life care pathway, evaluate predictors of care pathway use, and investigate the role of families in decision-making. The study also aimed to examine experiences of end-of-life care pathway use for stroke patients, their relatives and the multi-disciplinary health care team. Methods: A mixed methods design was adopted. Data were collected in four Scottish acute stroke units. Case-notes were identified prospectively from 100 consecutive stroke deaths and reviewed. Multivariate analysis was performed on case-note data. Semi-structured interviews were conducted with 17 relatives of stroke decedents and 23 healthcare professionals, using a modified grounded theory approach to collect and analyse data. The VOICES survey tool was also administered to the bereaved relatives and data were analysed using descriptive statistics and thematic analysis of free-text responses. Results: Relatives often played an important role in influencing aspects of end-of-life care, including decisions to use an end-of-life care pathway. Some relatives experienced enduring distress with their perceived responsibility for care decisions. Relatives felt unprepared for and were distressed by prolonged dying processes, which were often associated with severe dysphagia. Pro-active information-giving by staff was reported as supportive by relatives. Healthcare professionals generally avoided discussing place of care with families. Decisions to use an end-of-life care pathway were not predicted by patients’ demographic characteristics; decisions were generally made in consultation with families and the extended health care team, and were made within regular working hours. Conclusion: Distressing stroke-related issues were more prominent in participants’ accounts than concerns with the end-of-life care pathway used. Relatives sometimes perceived themselves as responsible for important clinical decisions. Witnessing prolonged dying processes was difficult for healthcare professionals and families, particularly in relation to the management of persistent major swallowing difficulties.

New Ways of Working in Acute Care: A Case for Change

This position paper focuses on the current tensions and challenges of aligning inpatient care with innovations in mental health services. It argues that a cultural shift is required within inpatient services. Obstacles to change including traditional perceptions of the role and responsibilities of the psychiatrist are discussed. The paper urges all staff working in acute care to reflect on the service that they provide, and to consider how the adoption of new ways of working might revolutionise the organisational culture. This cultural shift offers inpatient staff the opportunity to fully utilise their expertise. New ways of working may be perceived as a threat to existing roles and responsibilities or as an exciting opportunity for professional development with increased job satisfaction. Above all, the move to new ways of working, which is gathering pace throughout the UK, could offer service users a quality of care that meets their needs and expectations.