Psychosocial and Support Needs of the Main Caregiver for Adolescents and Young Adults Undergoing Treatment for Cancer.

BACKGROUND: Family relationships and social networks are critically important to adolescents and young adults (AYAs) with cancer, impacting their experience and well-being throughout the cancer trajectory. A cancer diagnosis impacts the development of independence and an adult identity, which can present challenges to psychosocial well-being needs and relationships between caregivers and AYAs. OBJECTIVE: The aim of this study was to explore the psychosocial and support needs of the main caregivers of AYAs. METHODS: This is a secondary analysis of the BRIGHTLIGHT caregiver survey, exploring items pertaining to support offered/engaged with, appraisal of helpfulness, and caregivers' emotional and psychological distress experience. Descriptive statistics, a correlational analysis, and a 1-way analysis of variance were conducted. RESULTS: There were 518 caregiver responses (62%). Over half received information about their caregiving needs, with the majority finding this very/fairly helpful. Most (80%) of those who had not received the information would have valued it. High levels of negative emotional and psychological well-being were reported, with 91% feeling depressed or anxious since the AYAs' diagnosis and 41% always/often experiencing these feelings. Total distress was associated with being younger, a parent, female, and unemployed, and earning a below-average income. CONCLUSIONS: The needs of caregivers are broad and multidimensional; however, some characteristics were associated with higher distress. When caregiver-specific information was provided by healthcare professionals, it was well received. IMPLICATIONS FOR PRACTICE: Healthcare professionals should consider caregivers' needs individually and provide/signpost to support. Caregivers need to be involved in designing and implementing future research, given the heterogeneity of needs identified.

Experiences of young girls and women undergoing ovarian tissue cryopreservation: a systematic review and thematic synthesis.

The aim of this study was to explore the experiences of young girls and women who underwent or considered ovarian tissue cryopreservation (OTC) using a systematic review of qualitative studies with thematic synthesis framework. Major electronic databases: MEDLINE, EMBASE, the Cochrane Library, CINAHL and PsycINFO were searched from 1946 to May 2020 and reference lists of relevant articles were hand searched. Any studies that described a qualitative inquiry and highlighted the experiences of women with regards to OTC were included. Two independent reviewers screened the title and abstracts and made a selection against inclusion criteria. Main outcomes measures were experiences of women who have considered and/or undergone OTC, decision making in women who underwent or considered OTC and patient education. Nineteen studies were assessed for full text eligibility and four were included in analysis. 144 verbatim quotations from 85 participants in high income countries (UK, USA and Denmark) were included. Two studies adopted grounded theory approach, one phenomenology and one inductive content analysis. Four themes were generated; participants described their experiences as emotional, involving complex decision-making, helping them prepare for the long-term consequences of potentially losing their fertility and hormonal function, as well as their experience being educational. Additionally, the more practical aspects of the procedure such as OTC being invasive as well as costs implications were highlighted. Women and young girls are often involved in making time-sensitive decisions whether or not to undergo OTC. Healthcare professionals involved in the care of young girls and women undergoing this method need to also take into consideration the emotional wellbeing of the patients as well as the time and expertise it requires to help them make an informed decision.

Men living through multiple miscarriages: protocol for a qualitative exploration of experiences and support requirements.

INTRODUCTION: Up to 1 in 4 pregnancies and 1 in 20 subsequent pregnancies end in miscarriage. Despite such prevalence the psychosocial effects are often unrecognised and unsupported. In the absence of any biomedical sequelae among men such marginalisation may be intensified. Men living through multiple miscarriages may also find any grief or anxiety intensified by loss of hope for future parenthood, but robust qualitative studies of these experiences are limited. We aim to rectify the deficiency. METHODS AND ANALYSIS: Our qualitative study will adopt the sounds of silence framework designed by Serrant-Green to hear the voices of populations possibly marginalised. We will listen and learn from 30 to 50 men with a history of two or more miscarriages. The research participants will be recruited from a recurrent miscarriage clinic at a large tertiary hospital in England, and from advertisements to be disseminated by the project sponsor and miscarriage charities.Individual telephone interviews supported by a semistructured discussion guide will be audio-recorded, transcribed and anonymised. The transcriptions and any field notes will be interpreted by the framework method of Ritchie and Lewis embedded within the sounds of silence framework. Tentative findings will be presented to research participants in face-to-face focus group discussion, to enable member synthesis to enhance authenticity. The focus group discussion will be audio-recorded, transcribed, anonymised and similarly interpreted to contribute to our final synthesis. ETHICS AND DISSEMINATION: The protocol of this project received a favourable opinion from the West Midlands South Birmingham Research Ethics Committee (16/WM/0423). Results will be submitted for publication in peer-reviewed journals and at conferences, and disseminated via newsletters and social media of our clinical collaborators and miscarriage charities. Outputs are anticipated to inform future policy and practice in the management of multiple miscarriages. TRIAL REGISTRATION NUMBER: ISRCTN 21828561.

'Surely you're not still breastfeeding': a qualitative exploration of women's experiences of breastfeeding beyond infancy in the UK.

OBJECTIVES: To explore women's experiences of breastfeeding beyond infancy (>1 year). Understanding these experiences, including the motivators, enablers and barriers faced, may help inform future strategies to support and facilitate mothers to breastfeed for an optimal duration. DESIGN: An exploratory qualitative study using an interpretive approach. Nineteen semistructured interviews were conducted (in person, via phone or Skype), transcribed and thematically analysed using the framework method. SETTING: Participants drawn from across the UK through online breastfeeding support groups. PARTICIPANTS: Maximum variation sample of women currently breastfeeding a child older than 1 year, or who had done so in the previous 5 years. Participants were included if over 18, able to speak English at conversational level and resident in the UK. RESULTS: The findings offer insights into the challenges faced by women breastfeeding older children, including perceived social and cultural barriers. Three core themes were interpreted: (1) parenting philosophy; (2) breastfeeding beliefs; (3) transition from babyhood to toddlerhood. Women had not intended to breastfeed beyond infancy prior to delivery, but developed a 'child-led' approach to parenting and internalised strong beliefs that breastfeeding is the biological norm. Women perceived a negative shift in approval for continued breastfeeding as their child transitioned from 'baby' to 'toddler'. This compelled woman to conceal breastfeeding and fostered a reluctance to seek advice from healthcare professionals. Mothers reported feeling pressured to breastfeed when their babies were young, but discouraged as children grew. They identified best with the term 'natural-term breastfeeding'. CONCLUSIONS: This study suggests that providing antenatal education regarding biological weaning ages and promotion of guidelines for optimum breastfeeding duration may encourage more women to breastfeed for longer. Promoting the concept of natural-term breastfeeding to mothers, and healthcare professionals, employers and the public is necessary to normalise and encourage acceptance of breastfeeding beyond infancy.

Patient advocacy in head and neck cancer: Realities, challenges and the role of the multi-disciplinary team.

This paper explores the concept of advocacy in head and neck cancer. We define inherent challenges in the development and success of advocacy within this context and offer ways to embed it within clinical practice. We outline what advocacy is, ways in which it may benefit people with head and neck cancer and the engagement required from healthcare professionals to facilitate advocacy to improve outcomes.

Men and Miscarriage: A Systematic Review and Thematic Synthesis.

Miscarriage is common, affecting one in five pregnancies, but the psychosocial effects often go unrecognized and unsupported. The effects on men may be subject to unintentional neglect by health care practitioners, who typically focus on biological symptoms, confined to women. Therefore, we set out to systematically review the evidence of lived experiences of male partners in high-income countries. Our search and thematic synthesis of the relevant literature identified 27 manuscripts reporting 22 studies with qualitative methods. The studies collected data from 231 male participants, and revealed the powerful effect of identities assumed and performed by men or constructed for them in the context of miscarriage. We identified perceptions of female precedence, uncertain transition to parenthood, gendered coping responses, and ambiguous relations with health care practitioners. Men were often cast into roles that seemed secondary to others, with limited opportunities to articulate and address any emotions and uncertainties engendered by loss.

Developing a Process for Criteria-Led Discharge: Selection of Patients for Efficient and Effective Discharge (SPEED).

BACKGROUND: Criteria-led discharge (CLD) is an approach for maximizing bed capacity by expediting patient discharge. PROBLEM: In acute medicine settings, patients commonly have multiple medical problems, which render single care pathway and clinical protocols of limited use. CLD offers potential, but little evidence exists about how to best implement it in these contexts. APPROACH: Retrospective case note analysis generated characteristics from patients' discharge plans to design a criterion-based framework to aid patient selection for CLD. These criteria were hypothetically tested on patient case notes (n = 50). OUTCOMES: CLD was identified as suitable (n = 27) and unsuitable (n = 23) from 50 case notes. Interrater agreement was 86% between 3 reviewers. CONCLUSIONS: This review has provided greater understanding of the complexity of discharge in acute medicine settings. Implementing CLD to optimize timeliness of patient discharge might offer a solution for selected patients.

Registration of randomized controlled trials in nursing journals.

BACKGROUND: Trial registration helps minimize publication and reporting bias. In leading medical journals, 96% of published trials are registered. The aim of this study was to determine the proportion of randomized controlled trials published in key nursing journals that met criteria for timely registration. METHODS: We reviewed all RCTs published in three (two general, one mental health) nursing journals between August 2011 and September 2016. We classified the included trials as: 1. Not registered, 2. Registered but not reported in manuscript, 3. Registered retrospectively, 4. Registered prospectively (before the recruitment of the first subject into the trial). 5. Timely registration (as 4 but the trial identification number is reported in abstract). RESULTS: We identified 135 trials published in the three included journals. The majority (n = 78, 58%) were not registered. Thirty-three (24%) were retrospectively registered. Of the 24 (18%) trials that were prospectively registered, 11 (8%) met the criteria for timely registration. CONCLUSIONS: There is an unacceptable difference in rates of trial registration between leading medical and nursing journals. Concerted effort is required by nurse researchers, reviewers and journal editors to ensure that all trials are registered in a timely way.

The effect of Nurse GraduaTeness on patient mortality: a cross-sectional survey (the NuGaT study).

AIM: To investigate the relationship between patient mortality and the educational preparation (graduateness) of the nurses who cared for them. BACKGROUND: There have been 18 studies over the last two decades examining the effect of nurses' educational qualifications on mortality. All but three have used mortality data aggregated at the hospital level that has been combined with surveys of nurses to estimate the level of graduateness in the population. Data collection and extraction generally has been done at different points in time. DESIGN: A retrospective, cross-sectional study. METHOD: Routine administrative patient data were extracted (May-August 2015). The primary outcome was all-cause patient mortality at discharge. We were able to identify the individual nurses who provided care during patients inpatient stay using an identification number. We were then able to calculate the 'graduateness' of the nursing care patients received by dividing the number of recorded episodes of care provided by baccalaureate prepared nurses with the total number of care episodes. RESULTS: After adjusting for confounding, we observed a significant association between patient mortality and nurse graduateness. Our observations suggest an optimum level of baccalaureate prepared nurses of approximately 70%. Above this level, there appears to be no additional decrease in mortality rates. CONCLUSION: This study represents an important methodological step forward over previous approaches. Our observations are generally consistent with existing literature and confirm the importance of baccalaureate nurse education.

The value of artefacts in stimulated-recall interviews.

AIM: To assess the use of artefacts in semi-structured, stimulated-recall interviews in a study exploring mentors' decisions regarding students' competence in practice. BACKGROUND: Few empirical studies have examined how mentors reach a decision when assessing students' performance in practice. Concerns have repeatedly been voiced that students may lack essential skills at the point of registration or that mentors may have failed or been reticent to judge students' performance as unsatisfactory. DATA SOURCES: Student practice assessment documents (PADs) were used in stimulated-recall (SR) interviews with mentors to explore decision making. REVIEW METHODS: A review of the literature identified that artefacts can play a role in triggering a more comprehensive retrospective examination of decision making, thus helping to capture the essence of a mentor's decision over time and in context. DISCUSSION: Use of an artefact to stimulate recall can elicit evidence of thought processes, which may be difficult to obtain in a normal, semi-structured interview. PADs proved to be a valuable way to generate naturalistic decision making. In addition, discussion of artefacts created by participants can promote participant-driven enquiry, thereby reducing researcher bias. CONCLUSION: Identifying an approach that captures post hoc decision making based on sustained engagement and interaction between students and their mentors was a challenge. Artefacts can be used to address the difficulties associated with retrospective introspection about a unique decision. IMPLICATIONS FOR PRACTICE/RESEARCH: There is the potential to increase the use of artefacts in healthcare research. SR can also help novice mentors develop their skills in making decisions regarding assessments of students.

Rescheduling nursing shifts: scoping the challenge and examining the potential of mathematical model based tools.

AIM: To review research in the literature on nursing shift scheduling / rescheduling, and to report key issues identified in a consultation exercise with managers in four English National Health Service trusts to inform the development of mathematical tools for rescheduling decision-making. BACKGROUND: Shift rescheduling is unrecognised as an everyday time-consuming management task with different imperatives from scheduling. Poor rescheduling decisions can have quality, cost and morale implications. EVALUATION: A systematic critical literature review identified rescheduling issues and existing mathematic modelling tools. A consultation exercise with nursing managers examined the complex challenges associated with rescheduling. KEY ISSUES: Minimal research exists on rescheduling compared with scheduling. Poor rescheduling can result in greater disruption to planned nursing shifts and may impact negatively on the quality and cost of patient care, and nurse morale and retention. Very little research examines management challenges or mathematical modelling for rescheduling. CONCLUSION: Shift rescheduling is a complex and frequent management activity that is more challenging than scheduling. Mathematical modelling may have potential as a tool to support managers to minimise rescheduling disruption. IMPLICATIONS FOR NURSING MANAGEMENT: The lack of specific methodological support for rescheduling that takes into account its complexity, increases the likelihood of harm for patients and stress for nursing staff and managers.

Developing a national mentorship scheme to enhance the contribution of clinical academics to health care.

AIM: To provide a template for developing a national mentoring scheme to enhance the contribution practitioner researchers can make to the quality of health care in England. BACKGROUND: The authors describe the background to and organisation of a mentorship scheme to support those awarded National Institute for Health Research (NIHR) fellowships as part of the Clinical Academic Training (CAT) scheme for nurses, midwives and the allied health professionals in England. DATA SOURCES: The paper draws on relevant policy documents to explain the development of the NIHR mentorship scheme. It also reviews the literature regarding mentoring in nursing and the health professions. REVIEW METHODS: The review was conducted systematically using keywords: mentorship, clinical academic careers, research, nursing research, clinical academic careers, evidence, health care. Databases included PubMed, CINAHL and Google Scholar. An integrated approach was adopted. DISCUSSION: Kirkpatrick's ( 2006 ) four-level evaluation model provided a framework to evaluate the scheme and explore the role of mentorship in supporting NIHR fellows. Preliminary findings from baseline and end-of-year evaluations revealed mentees' expectations of mentorship and its effects on their professional development. Developing a career as a clinical academic can be a challenging journey for novice researchers. In addition, there is a vital need to integrate research with clinical practice. CONCLUSION: Mentoring appears valuable in enabling NIHR fellows to navigate the challenges of demanding clinical roles in England's National Health Service while making a high-level contribution to research. The importance of preparing mentors for their role is well documented in the literature but mentees also need preparation and guidance to manage this important relationship. IMPLICATIONS FOR RESEARCH/PRACTICE: The evaluation has implications for embedding similar schemes across nursing, midwifery and the allied health professions to promote capacity and leadership in clinical academic careers. This study has uniquely identified the need to support mentees as well as mentors in such programmes to ensure the optimal benefit of the programme reaches all participants.

Managing Clostridium difficile infection in hospitalised patients.

Checklists are not a new phenomenon and have been used in the aviation industry for some time as a means of ensuring safety and minimising harm. Checklists are now used commonly in health care to improve patient safety. This article describes the development and integration of a daily review checklist process to support the care and management of patients with Clostridium difficile infection in one NHS trust hospital. The aim of the checklist is to assist staff in early recognition of disease severity, identification of potential complications and prevention of cross-transmission of C.difficile.

Time to unravel the conceptual confusion of authenticity and fidelity and their contribution to learning within simulation-based nurse education. A discussion paper.

High-fidelity patient simulation is a method of education increasingly utilised by educators of nursing to provide authentic learning experiences. Fidelity and authenticity, however, are not conceptually equivalent. Whilst fidelity is important when striving to replicate a life experience such as clinical practice, authenticity can be produced with low fidelity. A challenge for educators of undergraduate nursing is to ensure authentic representation of the clinical situation which is a core component for potential success. What is less clear is the relationship between fidelity and authenticity in the context of simulation based learning. Authenticity does not automatically follow fidelity and as a result, educators of nursing cannot assume that embracing the latest technology-based educational tools will in isolation provide a learning environment perceived authentic by the learner. As nursing education programmes increasingly adopt simulators that offer the possibility of representing authentic real world situations, there is an urgency to better articulate and understand the terms fidelity and authenticity. Without such understanding there is a real danger that simulation as a teaching and learning resource in nurse education will never reach its potential and be misunderstood, creating a potential barrier to learning. This paper examines current literature to promote discussion within nurse education, concluding that authenticity in the context of simulation-based learning is complex, relying on far more than engineered fidelity.

The dissonant care management of illicit drug users in medical wards, the views of nurses and patients: a grounded theory study.

AIMS: The aim of this study was to explore how registered nurses manage and deliver care to patients admitted to medical wards and Medical Assessment Units with complications of drug use and to elicit the experiences and views of those receiving that care. BACKGROUND: Illicit drug use is a major public health problem worldwide. The physical complications of problem drug use often result in admission to medical wards. Registered nurses working in these settings have been reported as possessing negative attitudes towards patients who use illicit drugs and lacking preparation to provide problem drug use-related care needs. DESIGN: Grounded theory. METHODS: A grounded theory approach was used to collect and analyse 41 semi-structured interviews. Data collection and analysis were undertaken in nine medical wards in the Northwest of England in 2008. A combination of purposive and theoretical sampling was adopted to recruit registered nurses (n=29) and medical ward patients (n=12) admitted for physical complications of problem drug use. Data were subjected to constant comparative analysis. FINDINGS: Two sub-categories emerged: 'Lack of knowledge to care' and 'Distrust and detachment' and these formed the core category 'Dissonant care'. The combination of lack of educational preparation, negative attitudes and experience of conflict, aggression, and untrustworthiness appeared to affect negatively the nurse-patient relationship. CONCLUSIONS: This study illuminated interplay of factors that complicated the delivery of care. The complexity of caring for patients who are pre-judged negatively by nurses appears to engender dissonance and disparities in care delivery. Better education and training, coupled with role support about problem drug use may reduce conflict, disruption, and violence and facilitate competent care for these patients.

Identification of depressive disorder among older people in care homes - a feasibility study.

BACKGROUND: Depression is common among older people but more common among those living in care homes. Depression is not easily detected among older adults because of the presentation, and the tendency for older people not to complain of depression, particularly those living in care homes. In general, care home staff have limited training in recognising depression. Depression is undertreated and residents may not receive a therapeutic dose of antidepressant. The true prevalence of depression among care home residents is uncertain. METHOD: This feasibility study aimed to explore the level of depression among older people in care homes by comparing the outcome of an assessment by care home staff with the outcome of a diagnostic clinical interview, using ICD-10 criteria and the 30-item Geriatric Depression Scale (GDS), conducted by a psychiatrist. RESULTS: In all, 47 older people from four care homes were interviewed by a psychiatrist. Of them, 39.1% (18/46) of residents were prescribed an antidepressant and were no longer depressed; 8.7% (4/46) were prescribed an antidepressant and remained depressed; and 6.5% (3/46) of residents assessed as being depressed, had not been prescribed an antidepressant. That is, 54% (25/46) of residents had been or were currently depressed. Using ICD-10 criteria, the sensitivity of the GDS at a threshold of 10 and 11 was 100%. In total, 89.4% of residents received a correct diagnosis (presence or absence of depression) using the GDS at the 11 threshold. SUMMARY: The prevalence of depression in these homes was 54%. Of the residents with depression, 72% (18/25) were managed with an antidepressant and 28% (7/25) were receiving ineffective or no treatment. The 30-item GDS can provide more useful information than a home care staff assessment for identifying depression. More research should explore the value of training home care staff to administer the 30-item GDS to optimise the management of depression in older people in care homes.

A concept analysis of simulation as a learning strategy in the education of undergraduate nursing students.

Simulation is increasingly referred to in the nursing literature and its use in healthcare has developed dramatically over the past decade. Whilst the concept of simulation is not new, there is now a greater emphasis on its use in nurse education (Murray et al., 2008). The purpose of this article is to develop understanding and define the concept of simulated learning as a strategy used in the education of undergraduate nursing students. The analysis outlined in this paper was guided by a systematic process of studying a concept presented by Walker and Avant (2005). The analysis sought to identify how the concept of simulation is interpreted in the existing literature printed in English and retrieved from databases (Medline, CINAHL, PubMed, and Cochrane Library), internet search engines (GoogleScholar) and hand searches. The definition offered is a work in progress and presents a theoretically grounded understanding of what simulated learning currently represents. The identified antecedents, critical attributes and consequences are presented as a basis to stimulate further research, development and understanding.