Patient-Centered Discussions About Disease Progression, Symptom, and Treatment Burden in Chronic Obstructive Pulmonary Disease Could Facilitate the Integration of End-of-Life Discussions in the Disease Trajectory: Patient, Clinician, and Literature Perspectives: A Multimethod Approach.

Background: Patients with chronic obstructive pulmonary disease (COPD) seldom discuss preferences for future care/treatments with clinicians. The lack of discussions prevents the delivery of care grounded on patient preferences. Instead, treatments become increasingly burdensome as disease progresses and patients approach the end of life. Objective: Identify current and best practice in initiating and conducting conversations about future and palliative care, by integrating data from multiple sources. Design: Multiphasic study where the findings of a systematic literature review and qualitative interviews were combined and synthesized using a triangulation protocol. Setting/Participants: Thirty-three patients with COPD and 14 clinicians from multiple backgrounds were recruited in the United Kingdom. Results: Clinicians' and patients' poor understanding about palliative care and COPD, difficulties in timing and initiating discussions, and service rationing were the main factors for late discussions. Divergent perspectives between patients and clinicians about palliative care discussions often prevented their start. Instead, early and gradual patient-centered discussions on treatment choices, symptom, and treatment burden were recommended by patients, clinicians, and the literature. Earlier patient-centered discussions may reduce their emotional impact and enable patients to participate fully, while enabling clinicians to provide timely and accurate information on illness progression and appropriate self-management techniques. Conclusion: Current approaches toward palliative care discussions in COPD do not guarantee that patients' preferences are met. Early and gradual patient-centered discussions may enable patients to fully express their care preferences as they evolve over time, while minimizing the impact of symptom and treatment burden.

Perceptions of people with motor neurone disease, families and HSCPs: a literature review.

Motor neurone disease or amyotrophic lateral sclerosis is a rapidly progressive terminal neurodegenerative condition caused by degeneration of the upper and lower motor neurones in the central nervous system of the brain. The effects of motor neurone disease are multifaceted, leading to many adjustments in everyday life. This literature review asked what the experiences of people living with motor neurone disease was before and during the COVID-19 pandemic and during the COVID-19 pandemic, especially in terms of their condition and the support they received from health and social care services. A key theme identified was lack of knowledge among professionals when they cared for people living with motor neurone disease and their families. This lack of knowledge often resulted in delayed diagnosis and poor standards of care. COVID-19 impacted on the care of people living with motor neurone disease and their families, and there is a paucity of evidence on how services were perceived by these groups during the COVID-19 pandemic. The experiences of people living with motor neurone disease and their families are currently missing in the literature. In conclusion, further studies are required to include care of people living with motor neurone disease and their families.

Clinician Perspectives on How to Hold Earlier Discussions About Palliative and End-of-Life Care With Chronic Obstructive Pulmonary Disease Patients: A Qualitative Study.

Chronic obstructive pulmonary disease is associated with progressive symptoms and increased treatment burden, especially at the end of life. However, most patients do not receive palliative care until late in their lives or discuss their end-of-life preferences with clinicians. This study explored clinicians' perspectives on the timing and nature of palliative care discussions. Qualitative interviews were conducted with 7 physicians and 7 nurses working in primary and secondary care settings. Data were analyzed using a thematic analysis. Participants advocated for early, gradual, and informed palliative and future care discussions, because these discussions were thought to be less traumatic and better accepted by patients. Despite this, patient- and clinician-related barriers severely affected clinicians' ability to start discussions at earlier stages. Participants felt many patients were not ready for these discussions and feared damaging hope if the subject was broached. Therefore, clinicians delayed discussions until patients approached the end of life. Stand-alone conversations about and near the end of life were described as current practice; however, clinicians believed these discussions reduced patients' hope and were potentially upsetting. Instead, individualized early, regular, and gradual discussions about immediate and long-term care plans were thought to be less negative and be better accepted.

The preferences of patients with chronic obstructive pulmonary disease are to discuss palliative care plans with familiar respiratory clinicians, but to delay conversations until their condition deteriorates: A study guided by interpretative phenomenological analysis.

BACKGROUND: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care. AIM: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians. DESIGN: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout. SETTING/PARTICIPANTS: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited. RESULTS: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences. CONCLUSION: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time.

People with enteral tubes and their carers' views of living with a tube and managing associated problems: A qualitative interview study.

BACKGROUND: Nutrition by enteral tube is a complex therapy requiring significant management to ensure safe, timely delivery of nutrients and avoidance of complications. In the home setting, people with enteral tubes and their carers are required to self-manage the therapy, including the need to cope with problems that arise. Whilst previous studies have conveyed experiences of people with enteral tubes, few have described views on enteral tube problems. AIMS AND OBJECTIVES: Drawing on the findings of a previously reported study (Journal of Human Nutrition and Dietetics, 2019), this paper aims to describe in-depth the experiences of people with enteral tubes and their carers of living with the tube day to day and managing problems that arise. DESIGN: A qualitative descriptive design using semi-structured in-depth interviews was employed. METHODS: A purposive sample of 19 people with enteral tubes and 15 carers of people with tubes participated. Interviews were recorded and transcribed. Using a thematic analysis approach, codes were defined and applied; themes developed and refined. Five themes with associated subthemes were generated, of which one, "living with the tube," is reported in-depth. The COREQ checklist was used. RESULTS: Participants described the tube affecting both physical and psychosocial being and revealed it had resulted in significant changes to their daily living, necessitating adaptation to a new way of life. Participants reported spending much time and effort to manage tube problems, at times without support from healthcare practitioners knowledgeable in tube management. Discomfort associated with the tube was commonly described. CONCLUSIONS: Living with an enteral tube impacts significantly on daily life requiring adaptations to normal routine. People with tubes and their carers use a range of strategies to manage common complications. RELEVANCE TO CLINICAL PRACTICE: Knowledge and understanding of how people with enteral tubes live with their tube and manage issues as they arise will enable healthcare practitioners to provide better support.

We are not the same people we used to be: An exploration of family biographical narratives and identity change following traumatic brain injury.

Subjective changes are increasingly recognised as important in recovery and rehabilitation following traumatic brain injury. Accumulation of subjective changes over time has led many to examine the question of "continuity of self" post-injury. Vacillation between feeling the same and different is common and often at odds with the medical narrative preparing families for permanent change. This position of ambiguity was examined in a qualitative narrative study. The aim of this paper is to describe the narrative structures used by uninjured members of a family to understand change. These changes relate primarily, to their perspective of whether and how the injured person had changed, but also secondarily to whether and why they themselves felt they had changed in the first year post-injury. Nine uninjured family members from three families took part in three unstructured interviews during the first twelve months post-injury. In-depth narrative analysis showed family members used biographical attendance; biographical disruption; biographical continuity; and biographical reconstruction to understand change. Drawing on these findings it is argued that concentrating on a narrative of change is too limiting and that engaging in biographical narratives may help humanise care provided to injured individuals and their families. Implications for research and practice are discussed.

Uncovering the decision-making work of transferring dying patients home from critical care units: An integrative review.

AIMS: To understand how decisions are made to transfer dying patients home from critical care units. BACKGROUND: Many people prefer a home death, but a high proportion die in critical care units. Transferring dying patients home is recognized to be complex but transfer decision-making itself remains unclear. DESIGN: Integrative review. DATA SOURCES: Seven bibliographic databases (origin-2015), grey literature and reference lists were searched. REVIEW METHODS: An integrative review method was used to synthesize data from diverse sources. Papers were selected through title and abstract screening and full-text reviewing, using inclusion and exclusion criteria derived from review questions. Following quality appraisal, data were extracted and synthesized using normalization process theory as a framework. RESULTS: The number of patients transferred home ranged from 1-346, with most papers reporting on the transfer of one or two patients. Four themes regarding transfer decision-making work were generated: divergent views and practice, multiple stakeholders' involvement in decision-making, collective work and limited understanding of individuals' experiences. CONCLUSION: The practice of transferring patients home to die and its decision-making varies internationally and is usually influenced by the care system, culture or religion. It is less common to transfer patients home to die from critical care units in western societies. A better understanding of the decision-making work was obtained but mainly from the perspective of hospital-based healthcare professionals. Further research is needed to develop decision-making practice guidance to facilitate patients' wishes to die at home.

Palliative and end-of-life care conversations in COPD: a systematic literature review.

Chronic obstructive pulmonary disease (COPD) is a chronic life-limiting disorder characterised by persistent airflow obstruction and progressive breathlessness. Discussions/conversations between patients and clinicians ensure palliative care plans are grounded in patients' preferences. This systematic review aimed to explore what is known about palliative care conversations between clinicians and COPD patients. A comprehensive search of all major healthcare-related databases and websites was performed following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Studies were quality assessed, employing widely used quality-assessment tools, with only papers scoring moderate-to-high quality included. All relevant data were extracted. A narrative synthesis was used to analyse, process and present the final data. The findings indicated that the frequency and quality of palliative care conversations is generally poor. Patients and physicians identified many barriers and important topics were not discussed. Patients and clinicians reported tension between remaining hopeful and the reality of the patients' condition. When discussions did happen, they often occurred at an advanced stage of illness and in respiratory wards and intensive care units. In conclusion, current care practices do not facilitate satisfactory conversations about palliative care between COPD patients and clinicians. This impacts upon the fulfilment of patients' preferences at the end of life.

Nursing curricula relating to care for disabled children: literature review.

AIM: To provide a literature review of nursing curricula relating to care for children with disabilities. BACKGROUND: Children with disabilities do not receive adequate attention in nursing curricula for children. INTRODUCTION: The best approach to promoting the standard of care delivery to children with disabilities is to improve the quantity and quality of training among health professionals. METHODS: We conducted the review using three databases, CINAHL, MEDLINE and ProQuest, between the years 1990 and 2015. The review commenced in 2012 and was updated in 2015. Seventy-eight studies were initially identified. RESULTS: Out of 78 retrieved articles, only six research articles contained all the keywords 'education', 'disability' and 'curriculum'; no articles contained all the keywords 'nursing education, 'children with disabilities' and 'curriculum'. DISCUSSION: Five themes have been generated from the literature review relating to disability content within nursing curricula, namely: overloaded curriculum, gaps in the contemporary curricula, lack of faculty expertise, problems with teaching methods and focus on the medical model. CONCLUSION: There was a paucity of evidence for the way that disability was presented in the nursing curricula for children. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Improving the provision of care delivery to children with disabilities should be paid adequate attention in nursing curricula for children. Additionally, there is a need for policy-makers to identify the best coverage of nursing curricula, as well as the most effective nurse training methods that enhance knowledge and clinical skills relating to the care of children with disabilities.

HAC-POA policy effects on hospitals, other payers, and patients.

BACKGROUND: Prior to the implementation of the Hospital-Acquired Condition-Present on Admission (HAC-POA) payment policy, concerns regarding its potential impact were raised by a number of organizations and individuals. The purpose of this study was to explore direct and indirect effects of the HAC-POA payment policy on hospitals, patients, and other payers during the policy's first 3 years of implementation. METHODS: The study included semi-structured telephone interviews with representatives of national organizations, hospitals, patient advocacy organizations, and other payers. Interview notes were coded using QSR NVivo qualitative analysis software using inductive and deductive qualitative analysis techniques. We conducted interviews with 106 individuals representing 56 organizations. Hospital staff included physicians, nurses, patient safety officers, coders, and finance, senior management, and information management staff. Individuals from other organizations represented leadership positions. RESULTS: Key changes to hospitals included: cultural shifts involving attention, commitment, and support from hospital leadership for patient safety; hiring new staff to assure the accuracy of clinical documentation and POA oversight structures; increased time burden for physicians, nurses, and coders; need to upgrade or purchase new software; and need to collaborate with hospital departments or staff that did not interface directly in the past. The policy was adopted by a majority of other payers, although the list of conditions and payment penalties varies. The HAC-POA policy is invisible to patients; therefore, the presence or lack of unintended consequences to patients cannot be fully assessed at this time. Understanding of policy effects to all stakeholders is important for maximizing its successful implementation and desired impact.

Challenges and solutions during analysis in a longitudinal narrative case study.

AIM: To describe the challenges faced by those performing complex qualitative analysis during a narrative study and to offer solutions. BACKGROUND: Qualitative research requires rigorous analysis. However, novice researchers often struggle to identify appropriately robust analytical procedures that will move them from their transcripts to their final findings. The lack of clear and detailed accounts in the literature that consider narrative analysis and how to address some of the common challenges researchers face add to this problem. DATA SOURCES: A longitudinal narrative case study exploring the personal and familial changes reported by uninjured family members during the first year of another family member's traumatic brain injury. Review methods This is a methodological paper. DISCUSSION: The challenges of analysis included: conceptualising analysis; demonstrating the relationship between the different analytical layers and the final research findings; interpreting the data in a way that reflected the priorities of a narrative approach; and managing large quantities of data. The solutions explored were: the mapping of analytic intentions; aligning analysis and interpretation with the conceptual framework; and the use of matrices to store and manage quotes, codes and reflections. CONCLUSION: Working with qualitative data can be daunting for novice researchers. Ensuring rigorous, transparent, and auditable data analysis procedures can further constrain the interpretive aspect of analysis. Implications for research/practice The solutions offered in this paper should help novice researchers to manage and work with their data, assisting them to develop the confidence to be more intuitive and creative in their research.

Baseline assessment of collaborative tuberculosis/HIV activities in Kinshasa, the Democratic Republic of Congo.

Ninety-two clinics were surveyed in 2005 as part of a baseline assessment of HIV activities in Tuberculosis (TB) clinics in Kinshasa, Democratic Republic of Congo. Some HIV activities were implemented in 58% of TB clinics. The majority of health had > or = 1 health care worker (HCW) trained in either HIV counseling or testing (71%). Fifty-three clinics offered counseling and testing to TB patients; twenty-two (42%) routinely offered HIV CT to all patients, while others used selective criteria. While most offered on-site counseling (92%) and testing (77%), not all 53 clinics had a HCW trained in counseling and only 31 had access to a counseling room. Cotrimoxazole prophylaxis was offered in 51% of clinics; antiretroviral treatment in 17%. Shortcomings in human resources, infrastructure and quality of services were revealed. Strengthening those clinics already implementing HIV activities could be prioritized to achieve the goals set forward by the Global Plan to Stop TB.

Experiences of end-of-life care in community hospitals.

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients' and family carers' experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions (n = 18) and their family carers (n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care.

Referrals for bereavement counselling in primary care: a qualitative study.

The growth in the provision of counselling services in British primary care offers an opportunity for general practitioners (GPs) to refer patients to counsellors following bereavement. This study explores the factors that influence GPs referral decisions. Qualitative interviews were conducted with 50 GPs from two cities in southern UK. The study found that GPs draw on notions of abnormal bereavement in making referral decisions. Indicators of bereavement problems related to: the nature of the death; level of social support; and reaction to the death. GPs views about the types of patients likely to benefit from counselling were further criteria employed in referral decisions. The study indicated that consideration of these factors may discriminate against certain types of patients being referred. Further education in the range of psychological theories of bereavement may assist GPs in understanding their bereaved patients' experiences and in developing their skills in recognising abnormal reactions and making appropriate referrals.