Providing holistic end-of-life care for people with a history of problem substance use: a mixed methods cohort study of interdisciplinary service provision and integrated care.

Harmful use of illicit drugs and/or alcohol is linked to life-limiting illness and complex health and social care needs, but people who use substances and have complex needs do not receive timely palliative care and fail to achieve quality standards for a good death. They and their families often require support from multiple health and social care services which are shown to be poorly integrated and fail to deliver interdisciplinary care. This study aimed to identify the existing barriers and facilitators within and between services in providing this population with a good death. Using a mixed methods approach of survey, focus groups and semi-structured interviews, we explored the perspectives of practitioner and management staff across a range of health and social disciplines and organisations in one combined authority in a large city in the north west of England. Our findings indicate that practitioners want to provide better care for this client group, but face structural, organisational and professional boundary barriers to delivering integrated and shared care. Differences in philosophy of care, piecemeal commissioning and funding of services, and regulatory frameworks for different services, lead to poor and inequitable access to health and social care services. Ways forward for improving care are suggested as bespoke hostel-based accommodation for palliative care for this client group, and specialist link workers who can transcend professional and organisational boundaries to support co-ordination of services and support. We conclude that it is no longer adequate to call for more training, better communication and improved joint working. Complex care at the end of life requires creative and cohesive systemic responses that enable multi-disciplinary practitioners to provide the care they wish to give and enables individuals using substances to get the respect and quality service they deserve.

Assessing the impact of Instagram use and deliberate self-harm in adolescents: A scoping review.

The use of Instagram by adolescents to access deliberate self-harm content is a growing concern among scholars, mental health professionals and families, with many adolescents (10-19-year-olds) imitating offline what they have seen online. This scoping review aims to investigate the extent to which Instagram use impacts the mental health of its adolescent users, identifying whether there is a relationship between time spent on Instagram and engagement in deliberate self-harm. The databases, PubMed, Web of Science, Google scholar, APA PsycInfo, CINAHL and child development and adolescent studies were explored, and after applying the inclusion/exclusion criteria, 15 papers were included in this review. Thematic analysis indicated that there was a relationship between time spent on Instagram and deliberate self-harm; desensitization of deliberate self-harm resulting in normalization; social contagion and that Instagram provided a sense of belonging to its users who engaged in deliberate self-harm. Implications of this research is that it is quickly outdated as new social media platforms are developed and that the reliance on self-reports does not have high validity or reliability.

Considerations of Intersectionality for Older Adults with Palliative Care Needs in the Emergency Department: An Integrative Review.

Purpose of Review: We sought to identify current interventions, research, or non-research evidence that has direct or indirect consideration of intersectionality in the care of older adults in the emergency department (ED). An integrative review informed by Crenshaw's Theory of Intersectionality was conducted in accordance with Whittemore and Knafl's five-stage methodology. A rigorous review process determined appropriateness for inclusion, and articles were analyzed for areas related to direct or indirect relationship to intersectionality. Recent Findings: Older adults aged 60 and above in the United States (US) account for more than 20% of ED visits annually, and half of older adults will visit the ED in their last year of life. There has been a growing focus on adapting the ED to meet the palliative care needs of older adults, but relatively little consideration has been given to older adults' intersectional identities. Summary: Six articles were identified that provided indirect insights into the status of intersectionality in ED-based palliative care for older adults. Two areas of interest were identified: (1) intersectional elements or reference to such elements embedded within the studies; and (2) the challenges of adapting quantitative methodologies to incorporate variables and approaches that would allow for intersectional analysis. This review highlights areas for future research along with recommendations for adopting an intersectional framing into commonly used methodologies.

Hyperacute stroke and the specialist nursing impact: exploring the cause and context of feelings of secondary traumatic stress - a qualitative inquiry.

Background: Secondary traumatic stress (STS) has been defined as the stress resulting from helping or wanting to help a traumatised or suffering person. The hyperacute nature of stroke specialist nurses' work places them at risk of developing STS. Aims: To explore the factors that are influential in stroke specialist nurses' experience of STS development within hyperacute practice. Methods: This study is qualitative with a narrative design. Data were collected from a purposive sample of stroke specialist nurses (20 female and 2 male) working in hyperacute services during the years 2016 and 2017. Data were analysed using Polkinghorne's approach. Results: This research identified four themes: exposure to acute suffering and death- young presentations; moral distress; interactions with relatives and problematic healthcare systems. Conclusion: The findings from this study suggest that stroke specialist nurses are exposed to multiple triggers which are commensurate with the potential for STS development. The findings contribute a new understanding of the emotional burden of hyperacute specialist stroke nursing that has implications for patient safety and satisfaction, services provision and staff well-being.

An ethical exploration of the narratives surrounding substance use and pain management at the end of life: a discussion paper.

This discussion article examines narrative positioning related to pain management for people who use substances at the end of life. We explore how dominant narrative genres associated with biomedicine, such as 'restitution' and narratives common within the context of drug services such as 'recovery' can hinder effective pain management within this population. We argue that these discourses can marginalise the ethical self-identity of patients who use substances at the end of life. It can also trouble health and social care professionals in supporting patients and generating counter-narratives that challenge those often associated with substance use. Stigma is a common experience for this population with stereotyping as 'junkies' and associated with criminality. They are positioned as drug-seeking, and this requires more surveillance at the end of life when opioid therapy is potentially more available and authorised. This can make it challenging to generate 'companion' stories that are positive and maintain moral adequacy. Dominant biomedical narrative genres often prevent the recognition of the fractured stories that people using substances can often present with. This can lead to narrative silencing and to the under treatment of pain. The person's self-identity is invested in narratives of recovery, and opioid use symbolises their addicted past because for practitioners, this population is at clinical risk with the potential for drug seeking behaviours. Whilst not requiring formal ethical review this discussion paper was constructed in accordance with good scientific practice with the work of other researchers respected and cited appropriately.

End of life care for people with alcohol and drug problems: Findings from a Rapid Evidence Assessment.

People who use alcohol and other drugs(hereafter "substances") and who are over the age of 40 are now more likely to die of a non-drug related cause than people who use substances under the age of 40. This population will therefore potentially need greater access to palliative and end of life care services. Initially, the purpose of this rapid evidence assessment (REA), conducted August 2016-August 2017, was to explore the peer-reviewed evidence base in relation to end of life care for people with problematic substance use. The following databases were searched using date parameters of 1 January 2004-1 August 2016: Amed, Psycharticles, Ovid, Ageinfo, Medline, Ebscohost, ASSIA, Social Care Online, Web of Knowledge, Web of Science, SSCI, Samsha, NIAAA. Data were extracted using a predefined protocol incorporating inclusion and exclusion criteria. Given the dearth of evidence emerging on interventions and practice responses to problematic substance use, the inclusion criteria were broadened to include any peer-reviewed literature focussing on substance use specifically and end of life care. There were 60 papers that met the inclusion criteria. These were quality assessed. Using a textual thematic approach to categorise findings, papers fell into three broad groups (a) pain management, (b) homeless and marginalised groups, and (c) alcohol-related papers. In general, this small and diverse literature lacked depth and quality. The papers suggest there are challenges for health and social care professionals in meeting the end of life needs of people who use substances. Addressing issues like safe prescribing for pain management becomes more challenging in the presence of substance use and requires flexible service provision from both alcohol/drug services and end of life care providers. Work is needed to develop models of good practice in working with co-existing substance use and end of life conditions as well as prevalence studies to provide a wider context for policy development.

A narrative literature review examining cancer treatment issues for patients living with intellectual disabilities.

PURPOSE: The experiences of cancer care can be mediated by many different factors and this narrative literature review aims to explore the experiences of cancer care in relation to people with intellectual disabilities receiving cancer treatment. METHOD: We undertook a search for articles in English from (Jan) 2000-(Feb) 2018 using Medline, CINAHL, ScienceDirect, ASSIA and Wiley. The inclusion criteria are 2000-2018, English language and focussing on experiences of cancer journey. We used a narrative approach and thematically analysed the data. RESULTS: There were 10 papers that met our inclusion/exclusion criteria. The themes generated included communication issues, information giving and decision-making. The literature suggests that communication and decision-making within cancer care are often mediated through support workers or family carers with minimal involvement of the person with intellectual disabilities. Information-giving by health professionals and support workers to people with intellectual disabilities was limited. This was often justified by the perceived distress this may cause. CONCLUSION: Training for health professionals and support workers in supporting people with intellectual difficulties is required for more effective communication in cancer care.

Narrative intelligence in nursing: Storying patient lives in dementia care.

This paper examines narrative approaches to care within the context of dementia. It reviews the function of stories and explores some of the narrative genres that shape the cultural perceptions of dementia. We argue that narrative intelligence within healthcare is an important element in nurturing communal self-identity for people living with dementia. Listening and responding to stories and the cultural framework that this encompasses is an embodied action that is not just related to cognitive recall but situates us within a cultural community. People with dementia may have challenges in maintaining narrative legitimacy in the face of fractured stories and incoherent narratives. Health professionals can offer support in reframing and presenting counterstories that maintain identities that can potentially be marginalised, silenced and open to narrative foreclosure. This process requires health professionals to be attentive and responsive to how patients with dementia and their supporters construct and position the stories they tell and the meaning(s) they attach to them.

Carer Experience Supporting Someone With Dementia and Cancer: A Narrative Approach.

In this article, we examine the challenges of informal carers supporting someone with dementia and cancer within the United Kingdom. Interviews were conducted with seven informal carers using a narrative approach to examine the construction of their experiences. Our findings demonstrate how informal carers navigate a path through complex cancer treatments and support their relative. A cancer diagnosis often requires multiple treatment visits to an oncology center, and this can be challenging for carers. They find that they need to coordinate and manage both health professionals and their relative in terms of getting access to appropriate services and support. This process can be particularly challenging in the presence of a cognitive impairment that often demands effective communication with different agencies. Carers frequently experienced multiple challenges including dealing with the stigma that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context.

The utility and impact of information communication technology (ICT) for pre-registration nurse education: A narrative synthesis systematic review.

OBJECTIVES: To evaluate and summarise the utility and impact of information communication technology (ICT) in enhancing student performance and the learning environment in pre-registration nursing. DESIGN: A systematic review of empirical research across a range of themes in ICT health-related education. DATA SOURCES: Science Direct, Cinahl, AMED, MEDLINE, PubMed, ASSIA, OVID and OVID SP (2008-2014). Further date parameters were imposed by theme. REVIEW METHODS: Evidence was reviewed by narrative synthesis, adopting Caldwell's appraisal framework and CASP for qualitative methods. Selection and inclusion was grounded in the PICOS structure, with language requirements (English), and further parameters were guided by theme appropriateness. RESULTS: Fifty studies were selected for review across six domains: reusable learning objects, media, audience response systems, e-portfolios, computer-based assessment and faculty adoption of e-learning. Educational ICT was found to be non-inferior to traditional teaching, while offering benefits to teaching and learning efficiency. Where support is in place, ICT improves the learning environment for staff and students, but human and environmental barriers need to be addressed. CONCLUSION: This review illuminates more advantages for ICT in nurse training than previously. The key advantage of flexibility is supported, though with little evidence for effect on depth of learning.

The challenges of health professionals in meeting the needs of vulnerable patients undergoing chemotherapy: a focus group study.

AIMS AND OBJECTIVES: To explore health professionals' perceptions of the needs of patients undergoing chemotherapy treatment for cancer. BACKGROUND: Patients with vulnerabilities face additional challenges. People with learning difficulties are often protected from even basic cancer information; patients with severe mental illness are open to structural discrimination with limited access to diagnostic and treatment services. There is also a much poorer survival rate after a cancer diagnosis for patients living with dementia. DESIGN: A qualitative design was used. METHODS: A focus group design was undertaken for this project using a narrative analytical approach revealing how narrative tales are presented and performed. Eighteen healthcare workers were recruited from a regional oncology centre in North West England. Two focus groups were conducted with nine participants in each. The data were collected from late 2011-2012. RESULTS: Participants were primarily focused on getting patients through treatment. The identification of vulnerability was an 'extra' complication and one that in practice was difficult to define/categorise. The participants appreciated the wider inclusion of family and friends to support vulnerable patients although they felt formalised health care was not particularly facilitative of this process. There were difficulties in achieving support for complex patient needs in the presence of a target driven culture. CONCLUSIONS: Healthcare professionals need wider managerial and cultural support in meeting the needs of vulnerable patients. There appeared to be a tendency by healthcare professionals to minimise the inherent coping abilities of vulnerable patients. RELEVANCE TO CLINICAL PRACTICE: There is a clear need to support health professionals in providing appropriate resources in order to address the complex needs of vulnerable patients. This requires a cultural shift away from targets and an investment into greater resources for effective multidisciplinary working.

Nutrition and cancer: issues related to treatment and survivorship.

This paper reviews nutritional issues related to cancer treatment and further explores nutritional needs pertinent to cancer survivorship. It examines the major problems with nutrition when patients undergo the main cancer treatment modalities of chemotherapy, radiotherapy and surgery. Particular attention is paid to long-term dietary advice in acknowledgement of the improved effectiveness of cancer treatment and the chronic nature of the condition.

Patient participation in decision making: views of health professionals caring for people with colorectal cancer.

AIM: The aim of this study was to explore views on patient participation in decision making, as described by health professionals caring for people with colorectal cancer. BACKGROUND: Patient participation in health-care decision making is on the policy agenda at an international level. However, many aspects of cancer care and treatment are complex and it is unclear how health professionals view their role as promoters of patient participation. DESIGN: A qualitative exploratory study. METHODS: In depth interviews with 35 health professionals in clinical practice. Data were analysed using thematic content analysis, assisted by a computer software package for analysis of qualitative data (N-VIVO). RESULTS: Choices in relation to surgical treatment were viewed as limited. Although it was perceived that patients could be more involved in decisions related to adjuvant treatment, providing information on various chemotherapy regimes was challenging. It was acknowledged that patients could be involved in treatment choices but there was far less clarity concerning aspects of physical and psychological care. Age was a factor when determining which patients should be offered treatment choices. CONCLUSION: The availability and presentation of choices to patients is context specific and tailored to the preferences of individuals. If health professionals focus only on aspects of decision making related to treatment, the potential for shared partnerships with patients in relation to choices about physical and psychological care may be lost. This may be particularly pertinent for nurses and allied professions who engage with patients throughout the illness trajectory. RELEVANCE TO CLINICAL PRACTICE: Policy makers should arguably appreciate that health professionals have an awareness of current thinking on patient participation, but may find policy recommendations challenging to implement in clinical practice when faced with the individual needs and preferences of patients and the complexities and uncertainties of disease management.

Information needs of the informal carers of women treated for breast cancer.

Although the vital role of informal carers has been acknowledged in government policy documents in the UK, the information needs of informal carers are not well documented. There is also uncertainty about where carers get their information from and whether they are satisfied with the information they receive. This study aimed to examine the information needs and sources of information for informal carers in the acute cancer setting; the informal carers of a sample of women treated for breast cancer. Both quantitative and qualitative data were collected from semi-structured interviews with 50 informal carers. Measures of information needs and sources were administered in addition to an in-depth exploration of information needs. The priority information needs of carers related to cure, spread of disease and treatments, a similar profile to that found for women with breast cancer in previous work. The main source of information for carers was the person they were caring for, although written information was also valued. Health professionals need to ensure that patients are well informed so that patients can provide information for carers and also need to take advantage of any opportunities to directly assess the information needs of carers to enable them to be more effective in their caring role.

Meeting the information needs of women with breast cancer: Piloting a nurse-led intervention.

This study evaluated a telephone intervention, administered by specialist breast care nurses, that aimed to meet the information needs of women with breast cancer. The intervention was developed from previous work that examined priority information needs. Participants were allocated to a telephone intervention (n = 67) or control group (n = 68). Data were collected by means of semi-structured interviews with participants at two time points (3 months and 8-12 months post-diagnosis) and focused on patient satisfaction with sources of information, information needs and psychological morbidity. Interviews were also conducted with breast care nurses to ascertain their views on administering the intervention. The intervention group reported fewer physical problems at Time 2 and were more likely to have had their information needs met than women in the control group. The control group were more likely to utilise media sources of information at Time 2 whereas women in the intervention group reported breast care nurses as their most prominent source of information. There were no significant differences in psychological morbidity between the two study groups. The findings indicate that the intervention is a feasible and acceptable approach to meeting the information needs of women with breast cancer. Further research is required to evaluate the intervention in a randomised controlled trial.

Exploring the decision-making preferences of people with colorectal cancer.

OBJECTIVES: To explore patient views on participation in treatment, physical care and psychological care decisions and factors that facilitate and hinder patients from making decisions. DESIGN: Qualitative study using semi-structured interviews with patients. SETTING AND PARTICIPANTS: Three NHS Trusts in the north-west of England. Theoretical sampling including 41 patients who had been treated for colorectal cancer. RESULTS: For patients, participation in the decision-making process was about being informed and feeling involved in the consultation process, whether patients actually made decisions or not. The perceived availability of treatment choices (surgery, radiotherapy, chemotherapy) was related to type of treatment. Factors that impacted on whether patients wanted to make decisions included a lack of information, a lack of medical knowledge and trust in medical expertise. Patients perceived that they could have a more participatory role in decisions related to physical and psychological care. CONCLUSION: This study has implications for health professionals aiming to implement policy guidelines that promote patient participation and shared partnerships. Patients in this study wanted to be well informed and involved in the consultation process but did not necessarily want to use the information they received to make decisions. The presentation of choices and preferences for participation may be context specific and it cannot be assumed that patients who do not want to make decisions about one aspect of their care and treatment do not want to make decisions about other aspects of their care and treatment.

Pseudomyxoma peritonei.

Pseudomyxoma peritonei is a rare, slowly progressive disease that produces extensive mucus accumulation within the abdomen and pelvis. It is managed by cytoreductive surgery involving hyperthermic intraoperative intraperitoneal chemotherapy.