Journal articles: 'Holistic Patient Care Approaches' – Grafiati (2024)

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Purpose – The purpose of this paper is to identify the shortcoming of a health-care institution to reduce the medical errors (MEs) which lead to the increase of physicians and patients relationship. Design/methodology/approach – Total relationship management (TRM) emphasizes the totality and the holistic nature of a relationship. It includes five generic quality dimensions (5 Qs) and measurements. 5 Qs will be used in the paper to identify the shortcoming of a health-care institution, identify and reduce the MEs which lead to the increase of the patient safety and doctors and patients satisfaction. Findings – The paper shows that there is a need for a health-care system response to error that moves the system toward being as fail-Zero tolerant and failsafe as possible rather than one that blames the clinician who may have erred. Research limitations/implications – The proposed 5 Qs model consists of some generic integrated dimensions. Practical implications – Teamwork practice, holistic view and integration of different competences and recourses will allow the support of information systems, the collection of evidence about care, and efforts for continuous quality improvement. Social implications – This research attempts to contribute to the previous academic studies and knowledge in quality of medical and health care by reducing the MEs and increasing patient safety. Originality/value – The 5 Qs can be used as diagnostic instrument to identify and understanding of how MEs and AEs occur and suggest prevention strategies to reduce patient severity and dissatisfaction. The main goal of such prevention strategies is to reduce the probability of error occurrence and increase the probability that the error would be remedied before an inadvertent injury occurred.

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Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team.

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Unmet symptom needs and a desire for holistic health approaches or even cure are among the motivations patients have for seeking out complementary and alternative medicine. Using complementary and alternative medicine instead of conventional cancer treatment can have a negative impact on clinical outcomes and survival. Integrative oncology is a patient-centered, evidence-informed field of comprehensive cancer care that uses mind-body practices, natural products, and lifestyle modifications from different traditions alongside conventional cancer treatments. It prioritizes safety and best available evidence to offer appropriate therapeutic interventions along with conventional care. This review summarizes the underlying principles of integrative oncology and how it is distinct from alternative medicine, and it provides a practical guide for the effective application of evidence-based complementary and alternative medicine interventions in patient-centered care. In addition, we recommend resources for patients and clinicians and provide algorithms for appropriate integrative medicine referrals. Finally, we offer suggestions on developing and implementing an integrative oncology program and addressing current challenges in the field.

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The current management of B-chronic lymphocytic leukemia (CLL) is no longer straightforward for the practicing hematologist. Rapid advances in diagnostic precision, methods of predicting prognosis, understanding of natural history of CLL, recognition of clinical complications, clarification of the quality of life (QOL) issues facing the CLL patient, and the exciting array of novel treatment approaches have made the care of the CLL patient more demanding. This review is focused on summarizing these advances in order to provide a framework for integrating this knowledge into routine hematologic practice.

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Abstract The current management of B-chronic lymphocytic leukemia (CLL) is no longer straightforward for the practicing hematologist. Rapid advances in diagnostic precision, methods of predicting prognosis, understanding of natural history of CLL, recognition of clinical complications, clarification of the quality of life (QOL) issues facing the CLL patient, and the exciting array of novel treatment approaches have made the care of the CLL patient more demanding. This review is focused on summarizing these advances in order to provide a framework for integrating this knowledge into routine hematologic practice.

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BackgroundAdvance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal.AimTo explore the views of primary care HCPs on how to improve their engagement with ACP in HF.Design and settingA qualitative interview study with GPs and primary care nurses in England.MethodSemi-structured interviews were conducted with a purposive sample of 24 primary care HCPs. Data were analysed using reflexive thematic analysis.ResultsThree main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor–patient relationship; and approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients’ quality of life. However, some feared that initiating ACP could irrevocably damage their doctor–patient relationship. Their own fear of death and dying, a lack of disease-specific communication skills, and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician–patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialties, and disease-specific training.ConclusionGPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician–patient engagement with ACP.

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COPD is a major cause of morbidity and mortality worldwide. Multimorbidity is common in COPD patients and a key modifiable factor, which requires timely identification and targeted holistic management strategies to improve outcomes and reduce the burden of disease.We discuss the use of integrative approaches, such as cluster analysis and network-based theory, to understand the common and novel pathobiological mechanisms underlying COPD and comorbid disease, which are likely to be key to informing new management strategies.Furthermore, we discuss the current understanding of mechanistic drivers to multimorbidity in COPD, including hypotheses such as multimorbidity as a result of shared common exposure to noxious stimuli (e.g. tobacco smoke), or as a consequence of loss of function following the development of pulmonary disease. In addition, we explore the links to pulmonary disease processes such as systemic overspill of pulmonary inflammation, immune cell priming within the inflamed COPD lung and targeted messengers such as extracellular vesicles as a result of local damage as a cause for multimorbidity in COPD.Finally, we focus on current and new management strategies which may target these underlying mechanisms, with the aim of holistic, patient-centred treatment rather than single disease management.

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Quality improvement and cost control rely on effective coordination of patient care. Registered nurses (RNs) across the continuum of care play an essential role in care coordination. Greater health care efficiencies can be realized through coordination of care centered on the needs and preferences of patients and their families. Professional nursing links these approaches, promoting quality, safety, and efficiency in care, resulting in improved health care outcomes that are consistent with nursing’s holistic, patient-centered framework of care. This model for RN care coordination provides a guideline for nurses in direct care as well as those in highly specialized care coordination positions.

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Abstract Introduction Burn patients often experience pain and fear of the recovery process, negatively impacting their engagement in necessary treatments for maximal functional outcomes. Patients routinely exhibit aversions toward physical and occupational therapies (PT and OT). As a result, therapists have been tasked with managing the patient’s psychological reactions while simultaneously providing rehabilitation. We developed a program for our psychologist to co-treat patients with burn physical and occupational therapists to directly address the painful or feared aspects of burn recovery. These multidisciplinary visits offer in-vivo interventions for managing patient distress and allows therapists the ability to focus solely on their specialized interventions. Methods This program has been active for 12 months and was created during therapy to aid a patient with high distress during PT and OT. Therapists now work with psychology to co-treat improving patient engagement in rehabilitative interventions. During co-treatment, the patients are able to engage in PT and OT more effectively and achieve short-term goals. The burn center psychologist and therapists have developed an interventional method to explore potential generalization of co-treatment effectiveness. Patients are identified based on high need for psychological support during therapy sessions. Each patient case is reviewed and discussed to develop individualized treatment plans and establish goals. Through qualitative review of each co-treatment visit, common barriers have been identified as well as strategies to improve engagement and compliance. Results The common barriers encountered had a high association with a history of traumatic experiences and avoidant coping/low distress tolerance. The most effective co-treatment interventions included: collaboratively setting patient goals with PT, OT and psychology; scheduling patient therapy with burn psychology in advance; teaching distress tolerance skills to manage anticipatory and in-vivo distress related to rehabilitation. Conclusions Treating the emotional aspects of burn recovery during moments of acute distress is integral for holistic patient care. This multidisciplinary approach offers patients increased involvement through collaboratively tailored treatment planning and improved ability to tolerate distressing aspects of recovery. Additionally, therapists were taught various approaches to improve patient engagement and adherence.

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The purpose of this article is to describe palliative care incorporation within the care of heart transplant patients. Palliative care is a holistic approach to care that includes symptom management and goal setting to improve patients’ quality of life. Palliative care is designed to be used with patients who have chronic illness that impacts quality of life and should be incorporated early in the disease. All providers have a responsibility to be knowledgeable in palliative care approaches and to know when to refer a patient for specialty palliative care services. This article will describe palliative care, research study findings, and current professional guideline recommendations for patients. The article also describes challenges and barriers to the use of palliative care in heart transplant patients and strategies to address these challenges and barriers.

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Recurrence and metastasis is a great problem not only to the patient suffering from cancer but also to the doctors in order to care the patient effectively. The present case study is a cancer case of a female, initially diagnosed with colon cancer in the year 1995 AD who underwent postsurgical and ayurvedic treatment simultaneously. The patient suffered from cancer in the different sites over the entire span of follow up duration of 24 years. Despite cancer growth since the initial diagnosis the patient suffered from uterine, renal cancers periodically and was successfully managed with the combined modern and ayurvedic approaches. The patient enjoyed the quality and happy life with not much difficulty during the entire study period since the beginning of this case. The tools applied for the case study were observation, clinical examination, face to face interviews, laboratory investigation reports, phone contact, and family feedback. The outcome of the study was highly remarkable and enthusiastic and revealed the outcome of Ayurvedic and other holistic approaches that helped to promote the quality of life of cancer patients when combined with modern cancer care protocol. The study recommends conducting such research to analyses the effect of integration of the Ayurvedic treatment approach which will eventually help to effective cancer care in low-income countries like Nepal. Keywords: Case study, effectiveness, Ayurveda, Integrated approach, Cancer care

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This article reviews adherence to medication in multiple sclerosis (MS) patients from the perspective of nurse and social worker authors. It reviews data on patient adherence and offers practical, evidence-based strategies that health-care providers can use to facilitate adherence. In addition, it examines how emerging MS therapies may affect patient adherence and associated interventions. To promote adherence, interventions need to incorporate new and creative approaches. A proactive approach includes assessing patient needs and lifestyle before the start of medication and selecting the most appropriate disease-modifying therapy for each individual patient. Including multidisciplinary expertise and services in the treatment plan can be part of a comprehensive, holistic approach to helping patients and families. Optimization of health-care provider roles is likely to facilitate improved adherence.

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A 58-year-old female had a total knee arthroplasty due to arthritic changes in her right knee, along with pain and loss of function. Mind and body intervention techniques were utilized to improve patient-centered outcomes. Protocols are in place for the rehabilitation of patients following a total knee arthroplasty. However, sometimes the mind–body connection can be disrupted, and plateaus in the rehabilitative process may benefit from innovative techniques. As patient-centered care, biopsychosocial models, and collaborative practice continue to push the athletic training profession, these types of cases that provide holistic approaches to expand health care will lead to future research.

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The aim of this report is to provide the reader an overview of the complex therapy currently used within the German health system. Complex therapies in inpatient care in Germany establish the basis for an integrative and interdisciplinary provision of services. They define minimal criteria for the organization of a hospital, enable the integration of different therapeutic approaches, and therefore, lead to an intensive and holistic treatment by a specially trained team. The German model can be viewed as a pilot program for the introduction of integrative patient-centered care in other hospitals around the world.

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The evidence base for use of different rehabilitation programs is discussed in the article. The most effective approaches to the rehabilitation organization and patients education are presented together with the different types of physical rehabilitation, ergotherapy and physical activities useful for the development of the maximum functional ability and social integration of rheumatic patients. The positive impact of the motivational interview in work with rheumatic patients, the results of the clinical studies on evaluation of the patients education influence on their functional abilities and psychologic status; recommendations on ortheses use are discussed in the article. The recommendations of the leading international expert groups about exercises, physiotherapy, ergotherapy prescribing to the patients with rheumatoid arthritis, osteoarthritis and connective tissue systemic diseases are given; the attention is drown to the methods of evaluation of patients physical status; patients education about energy saving technologies use for maximum possible functional and physical loads and patients autonomy at hom aend social life realization. Implementation of the given rehabilitation algorithms can help to realize holistic patient-centered approach, improve patients quality of life and functional capacity.

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Chronic Obstructive Pulmonary Disease (COPD) is the most common cause of admission to acute care facilities in Canada. The burden of illness for patients, caregivers and the health care system is profound. Dyspnea in advanced COPD pervades all aspects of patients’ lives. When increasing symptom burden limits patients to their homes, crucial primary care services become less accessible, and care of end-stage COPD becomes increasingly fragmented and reactive. Given the considerable physical and psychosocial consequences of advanced COPD, this phase can be devastating for patients and families. In this article we outline the need for clinical interventions and re-organized models of care designed for better continuity to achieve more favorable outcomes for these patients and their families. Outreach programs and use of personalized action plans that include advice on careful use of opioids can be remarkably effective. The move toward an integrated approach to COPD management with more effective advance care planning will help patients and their families make informed decisions throughout the illness trajectory. Intensive medical treatment focused on increasing survival can coexist with both holistic and palliative approaches to improve the quality of life of patients with severe end-stage COPD.

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Background: The concept of wound bed preparation is a holistic approach to wound diagnosis and treatment of the cause, patient-centered concerns and optimizing the components of local wound care (débridement, infection and persistent infection, moisture balance) before edge effect for healable but stalled chronic wounds. This article has introduced the concepts of healable, nonhealable and maintenance wounds. Additionally, clinical criteria (mnemonic NERDS and STONEES) are provided on the use of topical agents for critical colonization or systemic antimicrobials for deep and surrounding infection. Objective: To present a holistic, evidence-informed approach to chronic wound care management. Methods: This article reviews the scientific evidence base, and forms an expert consensus of key opinion leaders to the Wound Bed Preparation model. Results and Conclusion: This article provides clinicians with evidence-informed wound caring approaches translating the evidence base into practice.

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Background. Cancer patients widely seek integrative oncology which embraces a wide variety of treatments and system approaches. Objective. To investigate the concepts, therapeutic goals, procedures, and working conditions of integrative oncology doctors in the field of anthroposophic medicine. Methods. This qualitative study was based on in-depth interviews with 35 highly experienced doctors working in hospitals and office-based practices in Germany and other countries. Structured qualitative content analysis was applied to examine the data. Results. The doctors integrated conventional and holistic cancer concepts. Their treatments aimed at both tumor and symptom control and at strengthening the patient on different levels: living with the disease, overcoming the disease, enabling emotional and cognitive development, and addressing spiritual or transcendental issues according to the patient’s wishes and initiatives. Therapeutic procedures were conventional anticancer and symptom-relieving treatments, herbal and mineral remedies, mistletoe therapy, art therapies, massages and other external applications, nutrition and lifestyle advice, psychological support, and multiple forms of empowerment. The approach emphasised good patient-doctor relationships and sufficient time for patient encounters and decision-making. Individualization appeared in several dimensions and was interwoven with standards and mindlines. The doctors often worked in teams and cooperated with other cancer care–related specialists. Conclusion. Integrative cancer care pursues an individualized and patient-centered approach, encompassing conventional and multimodal complementary interventions, and addressing, along with physical and functional needs, the emotional and spiritual needs of patients. This seems to be important for tumor and symptom control, and addresses major challenges and important goals of modern cancer care.

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Introduction Musculoskeletal disorders may cause chronic pain, which is associated with deterioration in physical well-being, functions, and quality of life. There are worldwide shortfalls in the care that is provided to the affected patients. Holistic, interdisciplinary care is rare. Monomodal therapeutic approaches dominate when health-care resources are scarce. In this study, we test the patient-relevant outcomes of multimodal treatment for rheumatic diseases that are associated with pain and check for remuneration. Methods We performed a retrospective data analysis of an inpatient multimodal treatment. The target parameter was the patient perspective, which we assessed by means of Patient-Reported Outcomes (PRO). We applied the Visual Analogue Scale (mental and physical condition), the Heidelberg Short Early Risk Assessment Questionnaire, the Pain Disability Index, and the pain grading according to Kohlmann/Raspe (N = 375 patients). We also investigated compensation for inpatient treatments with and without multimodal treatments. Moreover, we compared Diagnosis-Related Group remuneration with and without complex treatment. Results After implementing a multimodal treatment, improved mental (mood) status was significantly better (Wilcoxon signed-rank test, P < . 001), despite high levels of pain (Kohlmann/Raspe) reported on admission. Apart from the underlying rheumatic disease, 111 patients also reported chronic back pain, which was improved following the treatment ( t test, P < . 001). Subjective impairments associated with pain were significantly lower at the end of the hospital stay (Wilcoxon signed-rank test, P < . 001). Compensation for inpatient treatments with multimodal treatments increased noticeably in German hospitals in 2016 to 2019, while remunerations for monomodal treatments show mixed results. Conclusion PROs regarding mood, pain, and perceived impairments improved following the multimodal complex treatment. Compensation of hospitals should take into account additional performance requirements of holistic treatments, whereby the promotion and further studies of PROs are recommended.

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Overview: Patients with advanced pancreatic cancer (APC) require early and frequent palliative interventions to achieve optimal quality of life for the duration of illness. Evidence-based supportive treatments exist to maximize quality of life for any patient, whether receiving chemotherapy or not. This article provides a comprehensive review of symptoms with current treatment recommendations and directions for future development. Celiac plexus neurolysis improves pain in the majority of patients with APC and should be moved earlier in the analgesic paradigm. Malignant bowel obstruction can be palliated quickly with optimal management via gastric decompression, octreotide, parenteral opioids, and standing antiemetics. Recommendations are provided for best treatment of malignant gastroparesis, gastric outlet obstruction, and chemotherapy-induced nausea and vomiting in this population. Malignant ascites can be treated initially with diuretics and sodium-restriction in patients with an exudative process; however, an indwelling catheter is recommended for patients with recurrent ascites, particularly because of carcinomatosis or a refractory process. With exocrine insufficiency contributing to weight loss, pancreatic enzyme replacement is essential to improve nourishment in the majority of patients. Presently, megestrol acetate is the only U.S. Food and Drug Administration (FDA)-approved therapy for the anorexia-cachexia syndrome, although future developments are promising. Finally, patients with advanced pancreatic cancer should be screened and treated early for depression as a common comorbid diagnosis. Early palliative care consultation also helps address the existential and psychosocial concerns of patients facing death from pancreatic cancer in a holistic manner.

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Purpose: To explore the personal experiences, challenges, and practices of parish nurses in their communities. Method/Design: The overall study used a mixed methods concurrent embedded design to describe parish nurses’ experiences with diabetes education and preconception counseling in their practice. Also included were descriptions of generalized practices. Therefore, this current report will focus on these broader experiences. Focus group data were collected using face-to-face, teleconference, and video conferencing formats with 48 nurses who consider themselves to be parish nurses and analyzed with content analysis. Findings: Four qualitative themes were identified in the data: (1) Gaining Entry Through Trust, (2) Enhanced Focus on Spiritual Caring, (3) Accomplishing Much Despite Challenges, and (4) Practice Making a Difference. Parish nurses are uniquely situated to provide holistic care for the mind, body, and spirit of their patients. Despite the many positive aspects, parish nurses experience unique challenges, such as funding their practice and working independently. Conclusions: The parish nurses can play a vital role in providing holistic care to patients in a faith-based community. Future work is needed to address the challenges of parish nurses such as access to continuing education programs related to health topics of concern to their community members.

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The health consequences of poverty present significant challenges; GPs have a unique and important role in minimising these issues. GPs manage patients and families throughout the life-course, using a holistic approach that incorporates psychosocial and biomedical dimensions of health and illness. GPs are first contact care providers, work in the heart of the community and are commissioners of health services. GPs serve a crucial role in integrating population health needs with individualised patient-centred care and addressing the wider determinants of health and illness to reduce disparities. Innovative approaches are needed and can be targeted in the individual consultation and at the practice, regional (commissioning) and national levels. Awareness, education, collaboration and resources are needed at multiple levels to minimise the health impacts of poverty. These are explored in this article and illustrated with a case study.

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Aims: Outcomes in opioid use disorder (OUD) in Nordic countries have improved with integrated treatment and harm-reduction programmes. Approaches and the standard of care are different across the region. Evidence of treatment needs and current approaches are defined from evidence to inform development of a common standard. Method: Evidence of population sizes and treatment approach collected. Common standards for care (harm reduction, pharmacotherapy, psychology/social therapy) defined for each country. Results: Evidence defines number in treatment; potential population needing treatment not defined for all countries. Populations sizes, treatment access (ratio in treatment programme compared to total country population) defined: Sweden 4,000 in OUD care (access ratio 40); Finland 3,000 (55); Norway 8,000 (154); Denmark 7,500 (132). Approach to treatment similar: integrated treatment programmes standard. Care provided by specialists in outpatient clinics/primary care; secondary care/inpatient services are available. Harm reduction is limited in Sweden but available and more accessible elsewhere. Treatment entry criteria: access relatively unlimited in Norway and Denmark, more limited in Finland and Sweden. Standards of care defined: easy access to high-quality services, individual planning, care not limited by time, management of relapse, education for patients, continuous engagement, holistic approach including management of comorbidities, needle equipment programmes without limit, treatment in prisons as community. Conclusion: There are opportunities to improve OUD care in the Nordics. Policy makers and clinicians can advance OUD care and share common success factors. Collaborative work across the Nordic countries is valuable. Further research in clinical practice development can yield important results for the benefit of patients with OUD.

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Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

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Background and Purpose: Spirituality has been identified as the essence of being human and is recognized, by many health care professionals, as a central component in health and healing. Scholars have identified spiritual nursing care as essential to nursing practice and include caring for the human spirit through the development of relationships and interconnectedness between the nurse and the patient. However, despite the recognition of spiritual practices as important to health, little attention has been given to spirituality in nursing practice and education in the literature. The purpose of this article is to explore factors contributing to the invisibility of spiritual nursing care practices (SNCP), recognition and offer strategies to enhance the visibility of SNCP. Two major factors that reduce visibility of SNCP are conceptual confusion differentiating between spirituality and religion and limited education in the area of spirituality including nursing curricula and organizations. Strategies to enhance visibility of SNCP include educational approaches in nursing curricula and health care organizations. to influence nurses’ perceptions about spirituality and creation of a culture of spiritual care. Conclusion: Holistic nursing includes assessing and responding to the spiritual needs of patients. Changes in nursing education and health care systems are needed to increase the visibility of SNCP.

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Background: The Bloom Program was designed to enhance pharmacists’ care of people with lived experience of mental illness and addictions in Nova Scotia. The Program’s demonstration period was from September 2014 to December 2016 and included a qualitative evaluation of the patient experience. Methods: Patients were recruited for individual interviews through Bloom Program pharmacies. Interviews were transcribed verbatim and analyzed following Braun and Clarke’s 6-step approach for thematic analysis. Results: Ten patients were interviewed between May and June 2016. Ten themes were determined through data analysis and included medication management, accessing pharmacists in a new way, providing social support, bridging service gaps, providing interim care, reducing financial barriers, navigation and advocacy, holistic approaches, empowerment through knowledge and awareness and collaboration. Discussion: Pharmacists expectedly provided medication management activities to patients for both physical and mental health concerns in the Bloom Program. Many activities conducted with Bloom Program patients fell outside of dispensing roles and medication management. These activities, such as social support, triage, navigation and increasing access, which were highly valued by patients, are poorly measured and assessed in pharmacy practice research. Conclusion: Participants in the Bloom Program reported the significant contributions of pharmacists and pharmacy teams in their overall health and wellness. Future evaluations of interventions like the Bloom Program should include measurement of constructs valued by patients and also consider impacts on inequalities and inequities. Pharmacy practice researchers can benefit from other research and evaluation being conducted for primary care interventions.

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This article will discuss chronic limb ischaemia as the result of peripheral artery disease (PAD) using a case study. The patient's concurrent diagnosis of metastases meant clinical decision making was complex and treatment options were limited. PAD is the third most common clinical presentation of atherosclerosis after coronary artery disease and stroke. Although advances in radiological technology and biochemical screening offer the potential for earlier intervention and improved survival rates for patients with PAD, a review of the evidence suggests that commitment to more conservative approaches, such as exercise therapy and health promotion, could have more sustainable, longer-term benefits for patients with chronic limb ischaemia. The therapeutic nature of the nurse–patient relationship makes nurses ideally placed for encouraging lifestyle changes and signposting to support services. Active participation from the patient is imperative for any potential modifications, which should be individualised as part of a holistic care plan, to ensure patient engagement and compliance. Therefore emphasis should remain on the management and prevention of modifiable risk factors, for which the nurse's role is an integral part to ensure success.

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Abstract In recent years, there has been an increase in therapeutic options and treatment strategies for pulmonary arterial hypertension (PAH). However, patients still report delays in receiving a diagnosis, which is a significant burden associated with the disease, and which shows a general lack of disease awareness. This review has been written by two PAH patients to describe the patient experience and explore the ways in which patients are increasingly being given a voice in developing approaches to treatment. As patients with PAH are living longer, it is important that they work with healthcare professionals to develop treatment strategies that improve and maintain quality of life. Healthcare professionals should consider a holistic approach to disease management, including dietary recommendations, individually adapted exercise, and options for counselling where available, alongside therapeutic treatments. The experiences of patients with PAH are important not just for individual patient treatment but should also be considered in clinical trial design and guideline development. Patient representatives and patient associations can play an influential role in improving the treatment and management of PAH. In this review, we use our experiences as patient representatives to describe the current situation of patients with PAH from first experiencing symptoms to receiving treatment, using two patient cases as examples. We also discuss the role of patient advocacy in improving PAH care and future roles for patient associations and patient representatives in the design of clinical trials and development of new treatment guidelines.

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Traditionally, chaplains have provided care for staff through consultation, informal conversation, grief work, and more formal counsel and ritual. This article discusses four programmatic approaches to staff care created in response to particular assessed needs: “Finding Soul” addresses staff care needs to find meaning and joy in their work and to contribute to the “soul” of the institution. “Existential Expedition” helps staff both deal with their accumulated grief and provide better direct care around existential issues being faced by their patients. “After Book” provides a way for staff to have closure with parents/families and to provide holistic care to families after discharge from the system. “The Labyrinth Program” provides staff with an opportunity to de-stress and to attend to their emotional and spiritual well-being. Focused upon staff care, these programs also secondarily benefit both patients/families and the vision and mission of the institution.

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This paper examines the implications of the movement towards evidence-based health care for community-based,primary health care nursing in Australia. While both aim to improve health status, we argue that they are antitheticalin many respects. Community nurse practitioners draw upon primary health care principles and adopt a holistic,preventive, empowering approach to working with and in communities. By contrast, evidence-based approaches utilisesystematic reviews of primarily quantitative research to inform decisions about health at three levels: public health, thehealth care system, and individual patients. In response to this challenge, community nurses must reiterate theirphilosophies and practice models. Moreover, it is imperative to produce verifiable evidence of the effectiveness of theirapproach while mounting a thorough critique of the evidence-based movement.

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Purpose: The present study aims to contribute to current knowledge about nurses’ perceived importance of lighting in patient rooms and to compare these perceptions across different ages, work shifts, (day and night), and environments of care (traditional and contemporary). Background: Creating an environment of care in patient rooms that successfully balances energy efficiency concerns with the holistic needs of patients, families, and caregivers poses a major challenge for future lighting systems. This study adds to a growing evidence base on the effects of lighting on nurses’ job performance, job satisfaction, and overall perceptions of the environment. Method: Survey responses from 138 participants working in medical–surgical units in four hospitals were analyzed using a mixed-methods approach, with three of the hospitals having lighting systems characterized as providing a traditional environment of care (TEC) and the other hospital having lighting systems characterized as providing a contemporary environment of care (CEC). Results: No significant differences were found based on age or work shift, but several significant differences were found between participants working in the hospital with a CEC and those working in hospitals with a TEC. Participants from the hospital with a CEC lighting system consistently reported higher lighting quality, fewer patient complaints, and less need for supplemental lighting than the participants from the three hospitals with TEC lighting systems. Conclusion: The results of this study provide evidence that innovative lighting approaches and technologies are worth considering as an investment by hospital administrators looking to improve perceptions of the patient room environment.

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Indirect treatment (concentrated relaxation and stress management) of student nurses did not produce a significant change in death anxiety or death depression or ability to communicate with the dying. Change in state anxiety and trait anxiety and general depression correlated with each other. Change in the three death attitude measures, however, neither correlated with each other nor with changes in the general anxiety and general depression measures. A viscosity model in which death anxiety and death depression are more resistant to change than general anxiety and general depression was proposed. It was contended that interventions based on Templer's (1976) two-factor theory tend to be simplistic and not implemented for the individual patient or research participant. More holistic approaches were recommended.

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Abstract Background The Whole Health model of the U.S. Department of Veterans Affairs (VA) emphasizes holistic self-care and multimodal approaches to improve pain, functioning, and quality of life. wHOPE (Whole Health Options and Pain Education) seeks to be the first multisite pragmatic trial to establish evidence for the VA Whole Health model for chronic pain care. Design wHOPE is a pragmatic randomized controlled trial comparing a Whole Health Team (WHT) approach to Primary Care Group Education (PC-GE); both will be compared to Usual VA Primary Care (UPC). The WHT consists of a medical provider, a complementary and integrative health (CIH) provider, and a Whole Health coach, who collaborate with VA patients to create a Personalized Health Plan emphasizing CIH approaches to chronic pain management. The active comparator, PC-GE, is adapted group cognitive behavioral therapy for chronic pain. The first aim is to test whether the WHT approach is superior to PC-GE and whether both are superior to UPC in decreasing pain interference in functioning in 750 veterans with moderate to severe chronic pain (primary outcome). Secondary outcomes include changes in pain severity, quality of life, mental health symptoms, and use of nonpharmacological and pharmacological therapies for pain. Outcomes will be collected from the VA electronic health record and patient-reported data over 12 months of follow-up. Aim 2 consists of an implementation-focused process evaluation and budget impact analysis. Summary This trial is part of the Pain Management Collaboratory, which seeks to create national-level infrastructure to support evidence-based nonpharmacological pain management approaches for veterans and military service personnel.

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Abstract Background Inflammatory Bowel Disease (IBD) is a chronic immune-mediated disease which affects nearly two million North Americans, with Canada demonstrating the highest age-adjusted incidence and prevalence rates globally. Resulting from compounding prevalence and limited resources, timely access to IBD care continues to be a widespread issue for patients and healthcare providers. Despite this pervasive issue, there has been no published research to date elucidating the patient perspective using qualitative approaches to compare and contrast the patient experience across Canada. The aim of the study was to elicit a qualitative stream of data to better understand phenomena related to access to IBD care from a patient-centered perspective. Methods Patients diagnosed with IBD (≥18 years of age) were recruited from gastroenterology clinics and communities through IBD specialists and Crohn’s & Colitis Canada. To ensure geographic diversity and representation, patients were recruited from both urban and rural regions. In order to acquire multiple access perspectives, patients were invited to bring a family member involved in their care to the focus groups. Co-facilitated by a researcher and patient-research partner, all focus groups were audio recorded, transcribed verbatim, and coded for themes. Themes were distilled through qualitative thematic analysis using Atlas.ti software to ascertain congruence or discordance of patient experiences in relation to IBD care access. Results Sixty-three participants were recruited in 14 focus groups across seven provinces. The majority of participants were female (41/63, 65%) and from urban/suburban regions (34/63, 54%). The mean age of participants was 48 years (SD=16 years, range=16 to 77 years). Thematic analyses identified four main barrier themes, each with multiple sub-themes: (1) structure/system issues (i.e. system stagnation), (2) processes (i.e. information management), (3) experiences (i.e. psychosocial support), and (4) patient as partner (i.e. autonomy, power dynamics). In response, four solution themes were proposed: (1) integration of holistic care into the clinical practice, (2) readily accessible psychosocial and nutritional support, (3) increased patient advocacy, and (4) continuity and liaison through provision of a healthcare navigator resource. Conclusion The complexity of IBD specialty care access cannot be underestimated. It is vital to possess a robust understanding of healthcare system structures, processes, and the significant impact these factors have on patients and the care received. Through the use of patient-centered exploration of barriers and facilitators, access to IBD specialty care in can be better understood and improved on both a national and international scale.

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Abstract Introduction Health outcome goals are the results individuals seek from healthcare. These may incorporate holistic themes including function, mood, and quality of life. People living with frailty have poorer outcomes from even short hospital stays. They benefit from person-centred, goal-directed care over protocol-driven pathway approaches. This could be improved by monitoring attainment of health outcome goals. Methods A systematic review for older people’s health outcome goals in emergency care was conducted using narrative synthesis. A qualitative study based on grounded theory expanded the outcome framework to include people living with frailty. People with cognitive and communication barriers were included in semi-structured interviews. Discussions focussed on the events and outcomes sought from emergency care. Results Older people’s health outcome goals for emergency care were classified as efficient and comprehensive care, sensitivity towards vulnerability, and person-centred informed care. The importance of understanding individual perceptions was explicit. Research generally recruited based on age rather than physiological and functional state, and did not assess for impact of frailty on healthcare perceptions. The interview study was paused due to the COVID-19 pandemic. Initial results showed a predominance of person-centred and holistic care themes among health outcome goals. Participants’ most common goal for emergency care was relief of symptoms: people often had pain. Participants mostly had severe frailty and wanted their mobility to be assessed, with goals of recovering their functional baseline. While participants had confidence in healthcare professionals and were generally willing to “do as we are told to feel better”, they expected to undergo at least basic tests in order to receive a working diagnosis for their problem. People wanted to understand their illness and for explanations to be communicated to their relatives. Next steps Patient-reported outcome measures (PROMs) for this range of emergency care outcomes are being identified for field-testing in acute settings.

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Introduction: It is considered that the home nursing care is better than the hospital care for a child with cancer because of the fact that the environment of a hospital may provoke a kind of psycho-emotional burden.Aim: The purpose of this review was to investigate literature which concerns the hospital care of pediatric patients with advanced cancer and the size of psycho-emotional burden on these children.Materials and methods: The data search was made in international databases for the period 2000-2015 and in earlier typical studies which signal the beginning of home care for children with cancer.Results: Pediatric patients receiving home health care are vulnerable groups of the population with specific and unique needs. Home care for children with life-threatening diseases is a process which aims to provide quality of life to both children and their family. This holistic care involves not only the biological needs of the pediatric patient but also concerns their mental, social and spiritual needs. Pediatric nurses, as well as other health professionals, that deal with such cases should convey positive energy and love to the children except from just possessing knowledge. Psychotherapy and drug treatment are the two main intervening approaches in children with depression symptoms. The most important support resource during child cancer care is the family environment. Good communication between family members is the first step that will help them cope with the child’s disease.Conclusion: Given that home care is superior to all other types of care, pediatric cancer patients being treated in their home receive the best possible care in aspects of meeting their biological, psychological, social and spiritual needs.

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The indigents have long been excluded from health policies in sub-Saharan Africa. Despite recent efforts by some countries to allow them free access to health services, they face a multitude of non-financial barriers that prevent them from accessing care. Interventions to address the multiple patient-level barriers to care, such as patient navigation interventions, could help reverse this trend. However, our scoping review showed that no navigation interventions in low-income countries targeted the indigents. The objective of this qualitative study is, therefore, to go beyond the lack of evidence and discuss relevant approaches to act in favor of health care equity. We interviewed 22 public health experts with the objective of finding out which actions related to patient navigation programs (identified in the scoping review for other target groups) could be relevant and/or adapted for the indigents. For each ability to access care described by Levesque and colleagues, we were thus able to list the potential opportunities and challenges of implementing each type of action for the indigents in sub-Saharan Africa. Overall, the experts all felt that patient navigation programs were very relevant to implement for the indigents. They emphasized the need for personalized follow-up and for holistic actions to consider the whole context of the situation of indigence. The recommendations made by the experts are valuable in guiding political decision-making, while leaving room for adaptation of the proposed guidelines according to different contexts.

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Background: Arts-informed dissemination is an expanding approach to enhancing knowledge translation in the health sciences. Problematic is the minimal evaluation studies and the rare reporting of the influencing factors of knowledge translation. “The 7,024th Patient” is a research-derived art installation created to disseminate findings about patients’ experiences of heart surgery and the importance of humanistic patient-centred care approaches. The current study’s purpose was to explore how arts-informed dissemination (i.e., “The 7,024th Patient”) influenced healthcare practitioners’ delivery of care.Methods: An arts-informed narrative study was guided by the Promoting Action on Research Implementation in Health Services framework. The sample included a multi-disciplinary group of 19 individuals who worked with patients undergoing and recovering from heart surgery. Two interviews were conducted with each participant at the time of viewing the installation and 6 months later. A narrative analysis was conducted using Pictorial Narrative Mapping techniques.Results: Study findings indicated that the arts as a form of evidence provide an experiential and aesthetic encounter, which stimulated reflective practice. Participants’ accounts reflected cognitive and behavioral modifications related to empathy, holistic approaches and relational care. However, the complexities associated with the interpretive process and the influencing knowledge translation elements indicated a need to dialogue about the translation process, including deconstructing the evidence within the context of one’s own practice.Conclusions: Art is not just works of beauty or eccentric paintings. There is an imaginative and aesthetic capacity that can be cultivated with diligence, creativity, and rigour in the world of healthcare research and knowledge translation. Next steps require the examination of the knowledge translation capacity of different art forms with a range of populations and disciplines. Additionally, this study suggests the need to explore arts-informed dissemination that draws upon a more dialogical intervention in which knowledge users are involved in the interpretive processes of knowledge translation.

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Multimorbidity is a growing healthcare problem, especially for aging populations. Traditional single disease-centric approaches are not suitable for multimorbidity, and a holistic framework is required for health research and for enhancing patient care. Patterns of multimorbidity within populations are complex and difficult to communicate with static visualization techniques such as tables and charts. We designed a visual analytics system called VISEMURE that facilitates making sense of data collected from patients with multimorbidity. With VISEMURE, users can interactively create different subsets of electronic medical record data to investigate multimorbidity within different subsets of patients with pre-existing chronic diseases. It also allows the creation of groups of patients based on age, gender, and socioeconomic status for investigation. VISEMURE can use a range of statistical and machine learning techniques and can integrate them seamlessly to compute prevalence and correlation estimates for selected diseases. It presents results using interactive visualizations to help healthcare researchers in making sense of multimorbidity. Using a case study, we demonstrate how VISEMURE can be used to explore the high-dimensional joint distribution of random variables that describes the multimorbidity present in a patient population.

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Dr. Khachaturian highlighted the importance of noncognitive symptoms of Alzheimer's disease (AD) for the care providers versus our current lack of knowledge about these symptoms' origin, their relationship with cognitive loss, and our ability to control them. Our relatively greater understanding of the pathophysiology of cognitive loss is not yet matched with respect to non-cognitive symptoms, explaining the hit-and-miss treatment approaches currently in use. It is thus essential to study the underlying biological basis of noncognitive changes in AD. Nonpharmacological approaches to the management of noncognitive symptoms in later stages of AD such as teaching of coping strategies must be encouraged, because they may have a major impact on the patient and the care providers. There is a relative paucity of instruments and clear outcome variables for noncognitive symptoms, including quality of life, which will have to be defined as related to the patient or to caregivers. Such symptoms should be studied in a holistic way in order to treat the underlying pathophysiological process rather than just suppressing unacceptable behaviors such as agitation. Although noncognitive symptoms in later stages of AD are important, from a national research strategy perspective, priority should be given to delaying onset of symptoms by some 10 years. Humane and ethical considerations must always predominate in research on treatment for later stages of AD.

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Abstract With reference to Joel Feinberg and Stephen Darwall, this paper develops a concept of human dignity which considers dignity as a fragile and vulnerable quality that can be lost and violated in specific situations. In contrast to holistic approaches to dignity, it requires the recognition of others as a source for a person’s normative authority about his or her life. Pre-forms of this concept are also relevant in the organisation of dementia care. In order to maintain the normative authority about the lives of dementia patients, care-givers are encouraged to respect their expressive actions and responses. Ignoring these expressions constitutes a violation of the dignity of dementia sufferers.

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BackgroundCancer is a serious public health problem worldwide, and its relationship with affective disorders is not clear.AimsTo investigate alcohol- and tobacco-related cancer risk among patients with affective disorders in a large Taiwanese cohort.MethodRecords of newly admitted patients with affective disorders from January 1997 through December 2002 were retrieved from the Psychiatric Inpatient Medical Claims database in Taiwan. Cancers were stratified by site and grouped into tobacco- or alcohol-related cancers. Standardised incidence ratios (SIRs) were calculated to compare the risk of cancer between those with affective disorders and the general population.ResultsSome 10 207 patients with bipolar disorder and 9826 with major depression were included. The risk of cancer was higher in patients with major depression (SIR = 2.01, 95% CI 1.85–2.19) than in those with bipolar disorder (SIR 1.39, 95% CI 1.26–1.53). The elevated cancer risk among individuals ever admitted to hospital for affective disorders was more pronounced in tobacco- and/or alcohol-related cancers.ConclusionsElevated cancer risk was found in patients who had received in-patient care for affective disorders. They require holistic approaches to lifestyle behaviours and associated cancer risks.

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Abstract Background Inflammatory Bowel Disease (IBD) is a chronic immune-mediated disease which affects nearly two million North Americans, with Canada demonstrating the highest age-adjusted incidence and prevalence rates globally. Resulting from compounding prevalence rates, the IBD clinical burden continues to grow. With high demand and limited resources, timely access to specialty healthcare services continues to be a difficulty faced by both patients and healthcare providers. Despite this pervasive issue, there has been no published research to date elucidating the patient perspective using qualitative approaches to compare and contrast the patient experience across Canada. Aims The aim of the study was to elicit a qualitative stream of data to better understand phenomena related to access to healthcare for individuals living with IBD from a patient-centered perspective. Methods Patients diagnosed with IBD (≥18 years of age) were recruited from gastroenterology clinics and communities through IBD specialists and Crohn’s & Colitis Canada. To ensure geographic diversity and representation, patients were recruited from both urban and rural regions. In order to acquire multiple access perspectives, patients were invited to bring a family member who was involved in their care to the focus groups. Co-facilitated by a researcher and a patient research partner, the focus groups were held in seven provinces across Canada. All focus groups were audio recorded, transcribed verbatim, and coded for themes. Themes were distilled through qualitative thematic analysis using Atlas.ti software to ascertain congruence or discordance of patient experiences in relation to IBD care access. Results A total of 63 participants were recruited in fourteen focus groups across seven provinces. The majority of participants were female (41/63, 65%) and from urban/suburban regions (34/63, 54%). The mean age of participants was 48 years (SD=16 years, range=16 to 77 years). Preliminary analyses illustrated three patient-identified access barrier themes: 1) Lack of multidisciplinary care (psycho-social and nutrition support), 2) Diagnostic delay, and 3) Inability to effectively receive and provide communication with healthcare providers. In response, four solutions were proposed: 1) Integration of holistic care into the clinical practice, 2) Readily accessible psycho-social and nutritional support, 3) Increased patient advocacy, and 4) Continuity and liaison through provision of a healthcare navigator resource. Conclusions The complexity of specialty care access for IBD patients cannot be underestimated. It is vital to possess a robust understanding of healthcare system structures, processes, and the significant impact these factors have on patients and the care received. Through the use of patient-centered exploration of barriers and facilitators, access to IBD specialty care in can be better understood and improved on both a provincial and national scale.

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One in 12 Canadians have a rare disease, yet medical education continues to espouse Dr. Woodward’s aphorism “when you hear hoofbeats think horses, not zebras.” This produces physician attitudes which are deleterious to the care of people with rare diseases. The McGill University Rare Disease Interest Group (rareDIG) has created programming which sensitizes medical students to the extent and reality of rare diseases.rareDIG helps them to develop attitudes and approaches which shorten the diagnostic odyssey and improve care of people with rare diseases. Success stems from drawing attention to the realities of rare disease through direct patient interaction, creating a strong social media presence, and building collaborations with rare disease advocacy groups and networks. Our inaugural Rare Disease Day event was attended by over 100 attendees including medical students, patients and their families, and a variety of health professionals.Other successes include a Patient Perspective Series addressing the holistic approach to rare disease, shadowing opportunities, “n = rare” journal clubs, and a “Humans of Rare Disease” advocacy project. Medical students represent an important cohort to target with rare disease awareness campaigns that has largely been overlooked by current advocacy efforts. By exposing medical students early in their education to the realities of rare diseases, student-run interest groups can improve medical students’ understanding and perception of rare diseases and ultimately improve patient care in the future. rareDIG strives to continue achieving its objectives in rare disease education and aide other medical schools in creating their own rare disease student groups.

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BACKGROUND: The depersonalization of the patient and his/her history is present in health care and it is described with great sensitivity in the literature, which, because it represents the human being integral, demonstrates how harmful this dehumanization process can be. OBJECTIVE: This essay aims to demonstrate how much the literature can provide a holistic view of the patient in the process of loss of autonomy. RESULTS: The short story Paulo by author Graciliano Ramos analyzes, in a poetic and specific way, a scenario of depersonalization of the patient and his history and how distressing it can be. On the other hand, it is important to analyze contexts such as the professional with Burnout syndrome and the pandemic by COVID-19 as potentiating this patient's dehumanization, since these scenarios trigger physical and emotional stress for the health professional and, therefore, can trigger emotional distance and dehumanization by the caregiver. CONCLUSION: The literature brings subjectivity to represent the process of illness and hospitalization from the perspective of the patient and, thus, allows an integral view of the being, which is essential to minimize the depersonalization of the patient and his history. The analysis from this context is necessary to insert approaches in care that go beyond the focus on illness, with the appreciation of listening and patient’s autonomy.

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Abstract Background Canada has the highest global age-adjusted incidence and prevalence rates of Inflammatory Bowel Disease (IBD). Resulting from compounding prevalence and limited resources, timely access to specialty care is a challenge faced by patients and healthcare providers. Despite this issue, there has been no published research elucidating the patient perspective using qualitative approaches to compare and contrast the patient experience across Canada. Aims To elicit a qualitative data stream to better understand phenomena related to access to healthcare for Canadians living with IBD from a patient-centered perspective. Methods Patients diagnosed with IBD (≥18 years of age) were recruited from gastroenterology clinics and communities through IBD specialists and Crohn’s & Colitis Canada. To ensure geographic diversity and representation, patients were recruited from urban and rural regions. In order to acquire multiple access perspectives, patients were invited to bring a family member who was involved in their care to the focus groups. Co-facilitated by a researcher and a patient research partner, the focus groups were held in Nova Scotia, New Brunswick, Quebec, Ontario, Manitoba, Saskatchewan, and British Columbia. All focus groups were audio recorded, transcribed, and coded for themes. Themes were distilled through qualitative thematic analysis using Atlas.ti software to ascertain congruence or discordance of IBD specialty care access experiences. Results A total of 63 participants were recruited in fourteen focus groups across seven provinces. The majority of participants were female (41/63, 65%) and from urban/suburban regions (34/63, 54%). The mean age of participants was 48 years (SD=16 years, range=16 to 77 years). Preliminary analyses illustrated three patient-identified access barrier themes: 1) Lack of multidisciplinary care (psycho-social and nutrition support), 2) Diagnostic delay, and 3) Inability to effectively receive and provide communication with healthcare providers. In response, four solutions were proposed: 1) Integration of holistic care into the clinical practice, 2) Readily accessible psycho-social and nutritional support, 3) Increased patient advocacy, and 4) Continuity and liaison through provision of a healthcare navigator resource. Conclusions The complexity of specialty care access for IBD patients in Canada cannot be underestimated. It is vital to possess a robust understanding of healthcare system structures, processes, and the significant impact these factors have on patients and the care received. Through the use of patient-centered exploration of barriers and facilitators, access to IBD specialty care in Canada can be better understood and improved on both a provincial and national scale. Funding Agencies CIHRNova Scotia Health Authority Research Fund

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ObjectivesTo explore the views of commissioners, service development leads, service managers and senior staff in selected dementia services on increasing the role of primary care in postdiagnostic support for people with dementia.DesignQualitative semi-structured telephone interviews and a focus group.SettingParticipants were drawn from National Health Service (NHS) Clinical Commissioning Groups, social care commissioning and a range of dementia services across primary care, secondary mental healthcare, social care and the third sector. All participants were based in England or Wales.Participants61 professionals, comprising 25 commissioners or service development leads; 25 service managers; and 11 team leads or senior staff.ResultsParticipants had varied views on whether a primary care-based approach for postdiagnostic support for people with dementia and their families was appropriate, achievable and/or desirable. Potential benefits of a task-shifted approach were continuity and a more holistic approach to care; familiarity for both patients and staff; and reduction of stigma. Key challenges included the capacity, ability and inclination of primary care to deliver postdiagnostic support for people with dementia and their families. We discovered a number of conceptual challenges to implementing a task-shifted and task-shared approach, including uncertainties around the nature of postdiagnostic support, the definition of primary care and identification of tasks that could be shifted to primary care.ConclusionsOur data highlight the concerns of key professional staff around greater involvement of primary care in postdiagnostic support for dementia. Further research is needed to achieve a shared understanding and consensus over what postdiagnostic support means in the context of dementia. We will be undertaking such research in the next phase of our programme.

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The aim of this essay is to raise awareness and broaden understanding within the health services community of the system dynamics (SD) simulation approach to policy analysis. The application of simulation in health services is reviewed. A comparison is made between the SD and traditional simulation approaches and is illustrated by considering reductions in waiting times for coronary heart disease treatment. Traditionally, simulation studies have tended to focus on the analysis of localized decisions and therefore on problems orientated towards individual patients. Although these methods are extremely powerful and effective, there is scope for an alternative modelling approach which is based on a more holistic perspective; SD is one such approach. It can assist in the design of robust policies by supporting debate on how the underlying structure might influence the evolutionary behaviour of a system. Using this method we can consider the time variation both of tangibles, such as waiting times and health care costs, and intangibles, such as patient anxiety and the effects of various pressures on purchasing decisions. We propose that SD holds great potential in assisting policy formation in health care.

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The aim of this study was to identify the needs, beliefs, and practices of Muslim family members during the end-of-life care for a family member in the intensive care unit (ICU) in Saudi Arabia. This was a phenomenological study using in-depth individual interviews to gather data. Ten family members of adult ICU patients receiving end-of-life care were interviewed. The experiences of family members during end-of-life care were reflected in four major themes: (a) the spirituality of death, (b) family’s need for information, (c) being there, and (d) the ICU environment. Participants placed high value on religious practices such as prayer, and appreciated when these practices could be accommodated in the ICU. Family participants also detailed their need for frequent communication and opportunities to ask questions about the care of their critically ill loved one. Being able to spend as much time as desired in close proximity to the critically ill patient particularly as the end of life approaches was also important, with participants suggesting that visitation times should be waived. Finally, family participant suggested that changes were needed to the ICU environment to make accommodating large families easier and more comfortable particularly when they wish to spend significant time at the bedside of their loved one. Family should be prioritized as an extension of the care provided to critically ill ICU patients, particularly those approaching end of life. A model of care should be introduced to deliver supportive and holistic care during the end-of-life care journey, supported by appropriate education regarding family care at the end of life.