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Qualitative Health Research Jun 2024The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially...
The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care.
PubMed: 38904368
DOI: 10.1177/10497323241246705 -
Global Health Action Dec 2024Spiritual Intelligence (SI) is an independent concept from spirituality, a unifying and integrative intelligence that can be trained and developed, allowing people to... (Review)
Review
Spiritual Intelligence (SI) is an independent concept from spirituality, a unifying and integrative intelligence that can be trained and developed, allowing people to make use of spirituality to enhance daily interaction and problem solving in a sort of spirituality into action. To comprehensively map and analyze current knowledge on SI and understand its impact on mental health and human interactions, we conducted a scoping review following the Joanna Briggs Institute methodology, searching for 'spiritual intelligence' across PubMedCentral, Scopus, WebOfScience, and PsycInfo. Quantitative studies using validated SI instruments and reproducible methodologies, published up to 1 January 2022, were included. Selected references were independently assessed by two reviewers, with any disagreements resolved by a third reviewer. Data were extracted using a data extraction tool previously developed and piloted. From this search, a total of 69 manuscripts from 67 studies were included. Most studies ( = 48) were conducted in educational ( = 29) and healthcare ( = 19) settings, with the Spiritual Intelligence Self Report Inventory (SISRI-24) emerging as the predominant instrument for assessing SI ( = 39). Analysis revealed several notable correlations with SI: resilience ( = 7), general, mental, and spiritual health ( = 6), emotional intelligence ( = 5), and favorable social behaviors and communication strategies ( = 5). Conversely, negative correlations were observed with burnout and stress ( = 5), as well as depression and anxiety ( = 5). These findings prompt a discussion regarding the integration of the SI concept into a revised definition of health by the World Health Organization and underscore the significance of SI training as a preventative health measure.
Topics: Humans; Spirituality; Mental Health; Intelligence; Emotional Intelligence
PubMed: 38904186
DOI: 10.1080/16549716.2024.2362310 -
BMJ Open Jun 2024Smoking cessation is an essential, but often overlooked aspect of diabetes management. Despite the need for tailored smoking cessation support for individuals with...
Assessing the feasibility and acceptability of a diabetes-specific nurse-led multicomponent smoking cessation intervention in diabetes education: study protocol for an open-label pragmatic randomised controlled trial.
INTRODUCTION
Smoking cessation is an essential, but often overlooked aspect of diabetes management. Despite the need for tailored smoking cessation support for individuals with diabetes, evidence of effective interventions for this cohort is limited. Additionally, individuals with diabetes do not easily adopt such interventions, resulting in low uptake and abstinence rates. This protocol describes a study that aims to assess the feasibility and acceptability of a unique smoking cessation intervention, based on the best evidence, theory and the needs of individuals with diabetes, among patients and service providers, the diabetes nurse educators.
METHODS AND ANALYSIS
This is an open-label pragmatic randomised controlled trial. Between 80 and 100 individuals with type 1 or type 2 diabetes who smoke will be recruited from the diabetes outpatients at the main acute public hospital in Malta, starting in August 2023. Participants will be randomly assigned (1:1 ratio) to the intervention or control arm for 12 weeks. The experimental intervention will consist of three to four smoking cessation behavioural support sessions based on the 5As (Ask, Advise, Assess, Assist and Arrange) algorithm, and a 6-week supply of nicotine replacement therapy. The control intervention will consist of an active referral to the Maltese National Health Service's one-to-one smoking cessation support service, which is based on motivational interviewing. The primary feasibility and acceptability outcomes include the recruitment and participation rates, resources used, problems identified by the nurses, the nurses' perceived challenges and facilitators to implementation and the nurses' and patients' acceptability of the study intervention. Data analyses will be descriptive, with quantitative feasibility and acceptability outcomes reported with 95% confidence intervals.
ETHICS AND DISSEMINATION
Ethical clearance was obtained from the Faculty of Health Sciences Research Ethics Committee, University of Malta. The study results will be disseminated through conference presentations and a publication in a peer-reviewed journal.
TRIAL REGISTRATION NUMBER
NCT05920096.
Topics: Humans; Smoking Cessation; Feasibility Studies; Pragmatic Clinical Trials as Topic; Diabetes Mellitus, Type 2; Patient Education as Topic; Diabetes Mellitus, Type 1; Patient Acceptance of Health Care
PubMed: 38904126
DOI: 10.1136/bmjopen-2023-083235 -
Annals of Palliative Medicine Jun 2024Bone metastases are a common and debilitating consequence of advanced cancer, often necessitating palliative radiation therapy (RT) for pain relief. Reirradiation (reRT)...
Bone metastases are a common and debilitating consequence of advanced cancer, often necessitating palliative radiation therapy (RT) for pain relief. Reirradiation (reRT) of bone metastases is often considered after lack of pain relief following an initial course of RT, after a partial but unsatisfying pain response to an initial course of radiotherapy, or after pain recurrence following a complete or partial pain response to an initial course of RT. The NCIC CTG SC.20 trial, a landmark multicenter, randomized, non-blinded, controlled non-inferiority trial, addressed the critical question of optimal dose fractionation for reRT in this patient population. This trial compared the efficacy and toxicity of a single 8 Gy fraction to multiple fractions totaling 20 Gy in 850 patients with painful bone metastases requiring reRT. The primary endpoint was overall pain response at 2 months, with secondary endpoints of quality of life (QoL) measures, functional interference, and toxicity profiles assessed using patient-reported questionnaires and the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30. The intention-to-treat analysis revealed no significant difference in pain response between the two arms, meeting the pre-specified non-inferiority criteria. The per-protocol analysis suggested a potential benefit for a subset of patients receiving multiple fractions, although this was not statistically robust. Acute toxicities were more prevalent in the multiple fractions arm, with implications for patient comfort and healthcare utilization. Importantly, responders to reRT reported significant improvements in functional interference and QoL. The trial's findings support the use of a patient-centric approach to palliative RT, highlighting the viability of a single 8 Gy fraction as a less toxic and more convenient treatment option, albeit with consideration for individual patient circumstances. These results have significant implications for clinical practice, potentially reducing healthcare burdens while optimizing patient convenience during palliative care for painful bone metastases.
PubMed: 38902990
DOI: 10.21037/apm-24-15 -
Annals of Palliative Medicine Jun 2024For those who have kidney failure and are managed conservatively without dialysis, symptoms are often prevalent, multiple, and troublesome. They interfere with quality...
For those who have kidney failure and are managed conservatively without dialysis, symptoms are often prevalent, multiple, and troublesome. They interfere with quality of life, reduce wellbeing, and can affect family carers too. Symptoms can sometimes be difficult to manage, and-for professionals-they are often hard to assess and not always amenable to management with medications appropriate for use in kidney failure. Fatigue is one of the most common symptoms; alongside a general overview of symptoms in this population, we include a more detailed discussion of this often-neglected symptom. The solutions to the main symptoms experienced by those with kidney failure managed conservatively without dialysis lie in detailed assessment and monitoring of symptoms, working as a multi-disciplinary team to the maximum to draw on the full range of skills and expertise, and use of non-pharmacological, as well as pharmacological, approaches. Both nephrology and palliative care skills and expertise are important to optimise the recognition, assessment, and management of symptoms. There are few published descriptions of models of conservative kidney management (CKM) or supportive kidney care and there is a lack of evidence to suggest which model is most effective. We therefore consider the evidence on optimal models of CKM and make suggestions for best practice.
PubMed: 38902989
DOI: 10.21037/apm-23-422 -
Annals of Palliative Medicine Jun 2024Chronic obstructive pulmonary disease (COPD) is characterized by persistent and progressive airflow restriction and is the third leading cause of death and disability,...
BACKGROUND AND OBJECTIVE
Chronic obstructive pulmonary disease (COPD) is characterized by persistent and progressive airflow restriction and is the third leading cause of death and disability, globally. People with severe COPD generally experience long-term functional decline punctuated by periods of acute exacerbation. Symptom burden can be severe and debilitating, and typically includes breathlessness, cough, fatigue, pain, anxiety, depression, and overall reduced quality of life. Understanding current palliative care needs and provisions in this group is an essential step to expanding access in future.
METHODS
A narrative review of specialist and generalist (primary) palliative care provisions for people with COPD, with an emphasis on breathlessness symptom management. This paper aims to examine the current landscape of palliative care provision and highlight barriers and facilitators to palliative care access for people with severe COPD.
KEY CONTENT AND FINDINGS
People living with severe COPD, as well as the people who care for them, are routinely under-serviced in best-practice end-of-life care, despite having symptom burden that is comparable to that of people with advanced cancer. Barriers to palliative care in this group include lack of specialist palliative care resources, uncertainty surrounding prognostication, and poor recognition of need from both patients and clinicians. Routine early palliative care involvement, including integration of specialist palliative care into respiratory services and upskilling of other healthcare providers to adopt palliative care principals within usual care (primary palliative care), have been shown to improve outcomes indicative of high-quality end-of-life care in this group, including symptom control, place of death, and legal preparations. Ongoing integration of specialist palliative care and professional education for generalist and non-palliative care specialist healthcare providers in the recognition and management of unmet palliative care needs is required to increase capacity beyond traditional specialist palliative care models.
CONCLUSIONS
Despite high level of symptom burden, many people with COPD miss out on palliative care. Expanding capacity of traditional specialist palliative care by upskilling generalist healthcare providers and integrating specialist palliative care into existing respiratory services is necessary to improve access for people with COPD.
PubMed: 38902988
DOI: 10.21037/apm-24-11 -
Annals of Indian Academy of Neurology May 2024Despite advancements in treatment, patients with Parkinson's disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate...
BACKGROUND
Despite advancements in treatment, patients with Parkinson's disease (PD) experience a range of symptoms that affect their quality of life. There is a need to integrate neuropalliative care into standard care. The aim of the study is to understand the psychosocial functioning in persons with PD and explore their caregivers' burden.
METHODS
The study utilizes a mixed-methods design where 50 patient-caregiver dyads attending the outpatient services of the movement disorder clinic at a tertiary care hospital were measured on psychosocial functioning and caregiver burden and palliative care outcomes for a period of 6 months. Focus group discussions were conducted with 18 patient-caregiver dyads to understand the needs of palliative care.
RESULTS
It was found that caregiver burden was positively correlated with palliative care outcomes scores of patients ( r = 0.586) and caregivers ( r = 0.675) and psychosocial functioning was positively correlated with palliative care outcomes of patients ( r = 0.708). The psychosocial functioning score was higher among female patients (indicating worse functioning) than males, and female caregivers experienced significantly higher caregiver burden. The qualitative findings reveal that there is a substantial gap in awareness about palliative care, lack of information, presence of stigmatizing beliefs, and lack of adequate accessibility to palliative facilities.
CONCLUSION
The study lays the foundation for future PD neuropalliative care research, guiding interventions, and exploration of regional variations in PD experiences in India. There is a need to address caregiver burden in PD in India.
PubMed: 38902870
DOI: 10.4103/aian.aian_83_24 -
BMC Cancer Jun 2024Despite the availability of effective vaccines, human papillomavirus (HPV) vaccine uptake remains low in most resource-limited settings including Nigeria. Mobile health... (Randomized Controlled Trial)
Randomized Controlled Trial
Impact of mobile health technologies on human papillomavirus vaccination uptake among mothers of unvaccinated girls aged 9-14 years in Lagos, Nigeria (mHealth-HPVac): study protocol of a randomised controlled trial.
BACKGROUND
Despite the availability of effective vaccines, human papillomavirus (HPV) vaccine uptake remains low in most resource-limited settings including Nigeria. Mobile health technology (mHealth) has the potential to empower patients to manage their health, reduce health disparities, and enhance the uptake of HPV vaccination.
AIM
The "mHealth-HPVac" study will assess the effects of mHealth using short text messages on the uptake of HPV vaccination among mothers of unvaccinated girls aged 9-14 years and also determine the factors influencing the uptake of HPV vaccination among these mothers.
METHODS
This protocol highlights a randomised controlled trial involving women aged 25-65 years who will be enrolled on attendance for routine care at the General Outpatient clinics of Lagos University Teaching Hospital, Lagos, Nigeria between July and December 2024. At baseline, n = 123 women will be randomised to either a short text message or usual care (control) arm. The primary outcome is vaccination of the participant's school-age girl(s) at any time during the 6 months of follow-up. The associations between any two groups of continuous variables will be assessed using the independent sample t-test for normally distributed data, or the Mann-Whitney U test for skewed data. For two groups of categorical variables, the Chi-square (X2) test or Fisher's exact test will be used, as appropriate. Using the multivariable binary logistic regression model, we will examine the effects of all relevant sociodemographic and clinical variables on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls. Statistical significance will be reported as P < 0.05.
DISCUSSION
The mHealth-Cervix study will evaluate the impact of mobile technologies on HPV vaccination uptake among mothers of unvaccinated but vaccine-eligible school-age girls in Lagos, Nigeria as a way of contributing to the reduction in the wide disparities in cervical cancer incidence through primary prevention facilitated using health promotion to improve HPV vaccination uptake.
REGISTRATION
PACTR202406727470443 (6th June 2024).
Topics: Humans; Female; Papillomavirus Vaccines; Adolescent; Nigeria; Child; Adult; Papillomavirus Infections; Telemedicine; Mothers; Vaccination; Middle Aged; Text Messaging; Patient Acceptance of Health Care; Aged; Uterine Cervical Neoplasms; Human Papillomavirus Viruses
PubMed: 38902718
DOI: 10.1186/s12885-024-12538-6 -
BMC Palliative Care Jun 2024The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part...
BACKGROUND
The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania).
METHODS
A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data.
RESULTS
Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively.
CONCLUSIONS
Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.
Topics: Humans; Palliative Care; Surveys and Questionnaires; Hypnotics and Sedatives; Europe; Male; Female; Middle Aged; Adult; Germany; Romania; Spain; Belgium; Netherlands; Italy; United Kingdom; Attitude of Health Personnel; Hungary; Practice Patterns, Physicians'
PubMed: 38902670
DOI: 10.1186/s12904-024-01484-6 -
BMC Palliative Care Jun 2024Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such...
Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.
BACKGROUND
Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care.
METHODS
This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care.
DISCUSSION
Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma.
TRIAL REGISTRATION
Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.
Topics: Humans; Qualitative Research; Palliative Care; Patient Discharge; Caregivers; Communication; Health Personnel; Primary Health Care; Male; Female; Adult; Interviews as Topic; Patients; Continuity of Patient Care
PubMed: 38902635
DOI: 10.1186/s12904-024-01451-1