Important Aspect Of Palliative Care Research Articles

A content analysis of YouTube videos on palliative care: understanding the quality and availability of online resources.

Improvement in quality care is an important aspect of palliative care for individuals with serious illnesses. Palliative care is a multidisciplinary strategy that addresses the physical, emotional, social, and spiritual needs of patients and their families. As technology advances, digital media - especially YouTube - has come to serve as a virtual educational platform, offering resources for health-related information, including information about palliative care. In this research, the main goal was to evaluate the quality and availability of online resources related to palliative care. Two theoretical frameworks were used: the Health Communication Model and the Information Quality Framework. These frameworks offer a way to understand how YouTube videos contribute to palliative care information and assess the quality of that information. This study utilizes a quantitative analysis approach to assess the quality and accessibility of YouTube videos on palliative care. Specifically, a random sample of 300 YouTube videos addressing palliative care was examined. Descriptive statistics were used to analyze the data, including the frequency and distribution of the different types of content, sources, and quality indicators. Chi-square tests were done to compare the quality of information provided by different sources and types of content. The results showed a variety of video types, with educational videos being the most common (40%), followed by personal stories (26.7%) and promotional videos (16.7%). We found that healthcare organizations (30%) and individual content creators (46.7%) were the sources for these videos. There were varying scores in terms of accuracy, completeness, and relevance when it came to quality assessment. While many videos received excellent ratings, some received poor ratings. Additionally, this analysis revealed that the majority of these videos were in English (83.3%), which poses a limitation for non-English speakers who may have difficulty understanding them.

Spiritual care at the end of life in the primary care setting: experiences from spiritual caregivers - a mixed methods study

BackgroundSpiritual care is an important aspect of palliative care. In the Netherlands, general practitioners and district nurses play a leading role in palliative care in the primary care setting. When they are unable to provide adequate spiritual care to their patient, they can refer to spiritual caregivers. This study aimed to provide an overview of the practice of spiritual caregivers in the primary care setting, and to investigate, from their own perspective, the reasons why spiritual caregivers are infrequently involved in palliative care and what is needed to improve this.MethodSequential mixed methods consisting of an online questionnaire with structured and open questions completed by 31 spiritual caregivers, followed by an online focus group with 9 spiritual caregivers, analysed through open coding.ResultsSpiritual caregivers provide care for existential, relational and religious issues, and the emotions related to these issues. Aspects of spiritual care in practice include helping patients find meaning, acceptance or reconciliation, paying attention to the spiritual issues of relatives of the patient, and helping them all to say farewell. Besides spiritual issues, spiritual caregivers also discuss topics related to medical care with patients and relatives, such as treatment wishes and options. Spiritual caregivers also mentioned barriers and facilitators for the provision of spiritual care, such as communication with other healthcare providers, having a relationship of trust and structural funding.. In the online focus group, local multidisciplinary meetings were suggested as ideal opportunities to familiarize other healthcare providers with spirituality and promote spiritual caregivers’ services. Also, structural funding for spiritual caregivers in the primary care setting should be organized.ConclusionSpiritual caregivers provide broad spiritual care at the end of life, and discuss many different topics beside spiritual issues with patients in the palliative phase, supporting them when making medical end-of-life decisions. Spiritual care in the primary care setting may be improved by better cooperation between spiritual caregiver and other healthcare providers, through improved education in spiritual care and better promotion of spiritual caregivers’ services.

Profile of patients undergoing palliative radiotherapy: A single-institute study from a tertiary care oncology center.

Background:Palliative radiotherapy (PRT) plays a significant role in the palliation of symptoms in patients with cancer and constitutes nearly 50% of the workload in different settings.Aims:The aim is to study patient-, disease-, and treatment-related characteristics in locoregionally advanced and metastatic malignancies meriting palliative management.Setting and Design:This was a retrospective observational study in a tertiary care government institute with academic and research potential.Methodology:The electronic medical records, medical documents, and radiotherapy (RT) treatment charts were retrieved and studied.Observations:A total of 460 patients were included in the study over 2 years, forming 30% of the total number of patients treated during the study period. Three hundred and ninety-six patients received PRT to the metastatic sites, while 64 patients received extremely hypofractionated PRT to the primary for symptomatic relief. Totally 442 patients showed good symptomatic response to PRT. One hundred and thirty-eight patients underwent re-irradiation. Lung was the most common primary site seen in 155 cases. The most common indication for PRT was palliation of pain from painful metastases as seen in 240 cases, and the next common indication was palliative whole-brain RT for brain metastases as seen in 159 cases.Conclusion:PRT forms an integral and important aspect of palliative care to the vast number of patients harboring metastatic disease that warrants some form of treatment for symptomatic relief. Short course of PRT in outdoor setting is a preferred mode of treatment to improve the quality of life of these distressed patients.

‘The horse has bolted I suspect’: A qualitative study of clinicians’ attitudes and perceptions regarding palliative rehabilitation

Background: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. Aim: To explore palliative medicine physicians’ attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. Design: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. Participants: Australian palliative medicine physicians working in inpatient palliative care units. Results: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years’ experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians’ attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. Conclusion: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

Impact of the condolence letter on the experience of bereaved families after a death in intensive care: study protocol for a randomized controlled trial.

BackgroundAs intensive care mortality is high, end of life is a subject of major concern for intensivists. In this context, relatives are particularly vulnerable and prone to post-ICU syndrome, in the form of high levels of anxiety, depression, post-traumatic stress, and complicated grief. Grieving families suffer from a feeling of abandonment and evoke the need to get back in touch with the team to ask questions and remove doubts, but very few actually do. Aiding families during the grieving process is an important aspect of palliative care. A condolence letter represents an opportunity to recognize the pain of the family member and the strong tie that linked the family member to the ICU team, and to offer additional information if necessary. The goal of the study is to measure the impact of the condolence letter on the experience of bereaved families after a death in the ICU. Our hypothesis is that a post-death follow-up in the form of a condolence letter sent by the ICU physician who was in charge of the patient may help to reduce the risks of presenting symptoms of anxiety/depression, post-traumatic stress, and complicated grief.Methods/designThis is a randomized, controlled, multicenter study. Research will compare two groups of bereaved family members: one group that does not receive a condolence letter (control) and one group that receives a condolence letter 15 days after the death (intervention). Each of the 22 participating centers will include 12 relatives. Participating relatives will be followed up by phone with a call at 1 month and one at 6 months to complete questionnaires, permitting evaluation of post-ICU burden. The main outcome is anxiety and depression measured at 1 month. Other outcomes include evaluation of quality of dying and death, post-traumatic stress, and complicated grief.DiscussionThis study will allow us to assess if sending a condolence letter can reduce the risks of presenting symptoms of anxiety and depression, complicated grief, and symptoms of post-traumatic stress disorder after the death of a loved one in the ICU.Trial registrationClinical Trials registration number: Clinicaltrials.gov NCT02325297 (23 December 2014).Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-016-1212-9) contains supplementary material, which is available to authorized users.

Support for Patients and Family Caregivers in Lung Cancer: Educational Components of an Interdisciplinary Palliative Care Intervention.

Consistent with the recommendations of the Institute of Medicine Report on quality cancer care, attention to symptom management and quality of life concerns of patients with lung cancer should be addressed throughout the disease trajectory. As part of a NCI-funded Program Project grant, this paper reports on the patient and family caregiver education component of a nurse-lead, tailored palliative care intervention for patients with early (I-III, n=130) and late (IV, n=142) stage lung cancer. Patients and family caregivers received 4 separate educational sessions organized around the Quality of Life model domains (physical, psychological, social, and spiritual well-being). Each patient and caregiver was presented at a weekly interdisciplinary case conference which also informed the educational sessions. Based on needs and team suggestions, an individualized palliative care plan was created and a tailored educational intervention was designed based on topics chosen by each participant. The most common topics chosen by patients in each domain were fatigue, worry and fear, social support/isolation, and hope. Family caregivers most commonly chose fatigue, worry and fear, communication, and purpose and meaning in life. The mean time spent in each teaching session ranged from 31 to 44 minutes for patients and 25 to 35 minutes for family caregivers. There is a vital need for interdisciplinary palliative care interventions for patients across all stages and across the disease trajectory. Nurses are vital to integrating palliative care into routine care. Providing a tailored educational intervention is an important aspect of palliative care for patients and family caregivers. This paper focuses on the process of the tailored educational intervention.

Nurses' perceptions of proactive palliative care: a Dutch focus group study.

Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses' perceptions of proactive palliative care. This study aimed to explore nurses' perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs. This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups. All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients' wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals. Nurses' involvement in proactive palliative care is important in supporting patients' palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance.

Drug therapy for pain in amyotrophic lateral sclerosis or motor neuron disease

Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is the most common neurodegenerative disorder of the motor system in adults. Pain in ALS is a frequent symptom especially in the later stages of disease and can have a pronounced influence on quality of life and suffering. Treatment of pain therefore should be recognised as an important aspect of palliative care in ALS. This is an update of a review first published in 2008. To systematically review the evidence for the efficacy of drug therapy in relieving pain in ALS. We also aimed to evaluate possible adverse effects associated with the different drugs and their influence on survival and quality of life. On 2 July 2012, we searched the following databases: the Cochrane Neuromuscular Disease Group Specialized Register (2 July 2012), CENTRAL (2012, Issue 6 in The Cochrane Library), MEDLINE (January 1966 to June 2012), EMBASE (January 1980 to June 2012), CINAHL (January 1982 to June 2012), AMED (January 1985 to June 2012) and LILACS (January 1982 to June 2012). We checked the bibliographies of trials identified and contacted other disease experts to identify further published and unpublished trials. We searched for randomised or quasi-randomised controlled trials on drug therapy for pain in amyotrophic lateral sclerosis. We collected data using a specially designed form and analysed them using the Cochrane Review Manager software. We found no randomised or quasi-randomised controlled trials on drug therapy for pain in ALS or MND. There is no evidence from randomised controlled trials about the management of pain in ALS. Further research on this important aspect of palliative care in ALS is needed. Randomised controlled trials should be initiated to determine the effectiveness of different analgesics for treatment of pain in ALS.

The development and audit of a spiritual care policy used across three hospices in England

Spiritual care may be said to be universally recognized as an important aspect of palliative care and yet its effectiveness is notoriously difficult to evaluate. This article traces the experience of a group of three hospice services in East Kent. It describes the formulation of a multidisciplinary policy for spiritual care based on the best available evidence. Clinical and non-clinical staff were encouraged through training to adopt an approach to spiritual care for all patients recognizing that their spiritual needs are broader than religious needs, The outcome of the training was audited and showed that the principles of the policy had been understood and put into practice. Lessons learned through the audit were then used to update the policy, adapt practice and plan a fresh round of training.

Shorter Symptom Assessment Instruments: The Condensed Memorial Symptom Assessment Scale (CMSAS)

Background. Rapid and efficient symptom assessment is an important aspect of palliative care. The objective was to determine whether a smaller number of symptoms from the 32-item Memorial Symptom Assessment Scale Short-Form (MSAS-SF) could convey equivalent quality of life (QOL) information. Methods. Responses from 479 medical oncology patients who completed the MSAS-SF and the Functional Assessment Cancer Therapy (FACT-G) were analyzed. Canonical correlations were performed to assess the relationships of 32 MSAS-SF symptoms to quality of life (FACT-G domains) and clinical variables [age, Karnofsky performance status (KPS), stage of disease, and inpatient status]. The relation of the subscales of the Condensed MSAS (CMSAS) and FACT-G to survival was assessed in a multivariate model. Results. The median age was 67 years (range, 20–89) and median KPS was 80% (range, 20–100). Primary sites were prostate in 141 (29%) patients, lung in 121 (26%) patients, colorectal in 53 (11%) patients, hematologic in 50 (10%) patients, head and neck in 30 (6%) patients and other in 84 (18%) patients. Median survival was 245 days (range, 1–2,215 days). Canonical correlation analyses identified a five-dimensional QOL factor structure. Symptoms important for QOL also correlated significantly with survival and provided the basis for the CMSAS with 14 symptoms and 3 subscales (CMSAS SUM, CMSAS PHYS, and CMSAS PSYCH). In multivariate analyses, the CMSAS PSYCH predicted survival independently of stage, performance status, and QOL. The CMSAS takes 2–4 minutes to complete. Conclusion. The CMSAS contains both QOL and survival information approximately equivalent to the original 32 items.

Psychiatric dimensions of palliative care

A critically important aspect of palliative care is the prompt recognition and effective treatment of psychiatric complications. Psychiatric syndromes such as depression, anxiety, confusion, suicidal ideation, and wish for hastened death or assisted-suicide occur in a significant percentage of patients with advanced illness. This article reviews their frequency, diagnosis, associated factors, and management to help expand the focus of palliative care beyond pain and physical symptom control.