scholarly journals Patients' perspectives on how to improve diabetes self-management and medical care: a qualitative study

2018 ◽  
Author(s):  
Ruth Ndjaboue ◽  
Selma Chipenda Dansokho ◽  
Maman Joyce Dogba ◽  
Bianca Boudreault ◽  
Roberta Price ◽  
...  
Keyword(s):  
Medical Care ◽  
Lived Experience ◽  
Diabetes Care ◽  
Health Professionals ◽  
Research Network ◽  
Self Management ◽  
Framework Analysis ◽  
Patient Centered ◽  
The Impact ◽  
Expert Patients

Background: The experience of living with a chronic disease such as diabetes can provide valuable knowledge about medical care and self-management. Such knowledge may be of use to people seeking to improve diabetes self-management and to health professionals seeking to provide better patient-centered care.Objective: To identify potential areas for improvement in diabetes care from the perspectives of people living with diabetes and their caregivers.Methods: We interviewed 21 people living with diabetes (hereafter called expert patients) who were patient partners in a national Patient-Oriented Research network. Expert patients were men and women from various backgrounds, including Indigenous people and immigrants to Canada. They had significant lived experience of diabetes and were able to offer diverse patient and caregiver perspectives. Three authors independently analyzed videos using inductive framework analysis, identifying themes through discussion and consensus. Results: From expert patients’ perspective, people living with diabetes benefit from acknowledging and accepting the reality of diabetes, receiving support from their family and care team, and not letting diabetes control their lives. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency. Conclusions: From the perspectives of expert patients, there are areas for improvements in diabetes care. These improvements are actionable individually by patients or health professionals and also collectively through collaboration between both groups. Improving the quality of care in diabetes is crucial for improving health outcomes in Canada.

scholarly journals Patients’ perspectives on how to improve diabetes care and self-management: qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (4) ◽  
pp. e032762
Author(s):  
Ruth Ndjaboue ◽  
Selma Chipenda Dansokho ◽  
Bianca Boudreault ◽  
Marie-Claude Tremblay ◽  
Maman Joyce Dogba ◽  
...  
Keyword(s):  
Diabetes Care ◽  
Health Professionals ◽  
Research Network ◽  
Self Management ◽  
Framework Analysis ◽  
Convenience Sample ◽  
Individualised Care ◽  
The Impact ◽  
Expert Patients ◽  
Improve Diabetes Care

ObjectivePeople living with diabetes need and deserve high-quality, individualised care. However, providing such care remains a challenge in many countries, including Canada. Patients’ expertise, if acknowledged and adequately translated, could help foster patient-centred care. This study aimed to describe Expert Patients’ knowledge, wisdom and advice to others with diabetes and to health professionals to improve diabetes self-management and care.Design and methodsWe recruited a convenience sample of 21 men and women. Participants were people of diverse backgrounds who are Patient Partners in a national research network (hereafter Expert Patients). We interviewed and video-recorded their knowledge, wisdom and advice for health professionals and for others with diabetes. Three researchers independently analysed videos using inductive framework analysis, identifying themes through discussion and consensus. Expert Patients were involved in all aspects of study design, conduct, analysis and knowledge translation.ResultsAcknowledging and accepting the reality of diabetes, receiving support from family and care teams and not letting diabetes control one’s life are essential to live well with diabetes. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency.ConclusionExpert Patients pointed to a number of areas of improvement in diabetes care that may be actionable individually by patients or health professionals, and also collectively through intergroup collaboration. Improving the quality of care in diabetes is crucial for improving health outcomes for people with diabetes.

scholarly journals Receiving a Diagnosis of Pernicious Anemia: Exploring Experiences of Relationships With Health Professionals

2019 ◽  
Vol 7 (5) ◽  
pp. 766-770 ◽  
Author(s):  
Catherine Heidi Seage ◽  
Emily Glover ◽  
Jenny Mercer
Keyword(s):  
Medical Care ◽  
Pernicious Anemia ◽  
Lived Experience ◽  
Health Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Medical Profession ◽  
Diagnostic Delay ◽  
Vitamin B12 Deficiency ◽  
Well Being ◽  
Patient Centered

Objectives: Pernicious anemia (PA) is a chronic condition caused by vitamin B12 deficiency. This is a qualitative study using interpretative phenomenological analysis (IPA), which aimed to explore the patients lived experience of diagnosis and treatment. Methods: Eleven semistructured interviews were conducted in PA patients; these covered participants’ diagnostic and treatment journeys, the responses of others to their diagnosis, and the role health professionals have played in their medical care. Interviews were analyzed for recurrent themes using IPA. Results: Three superordinate themes were identified: “The struggle to achieve a diagnosis,” “The significance of a diagnosis,” and “Battling for sufficient treatment.” Participants were dissatisfied with their medical care due to diagnostic delay, insufficient treatment, and poor relationships with their health professionals. Many experienced, anticipated, and internalized stigma, which led to a reduced quality of life and withdrawal from the medical profession. Discussion: Participants’ interactions with their health professionals hindered their adaptation to their condition; this affected their psychological and physical well-being. Increased clinician awareness of stigma in the PA population symptoms and effective patient-centered communication is required.

scholarly journals PARE0005 INTEGRATED REFERRAL OF NEWLY DIAGNOSED RHEUMATOID ARTHRITIS PATIENT TO EDUCATION AND SUPPORT RESOURCES DELIVERED BY PATIENT LED ORGANISATION

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1288.1-1289
Author(s):  
I. Mcnicol ◽  
A. Bosworth ◽  
C. Jacklin ◽  
J. Galloway
Keyword(s):  
Rheumatoid Arthritis ◽  
Health Professional ◽  
Health Professionals ◽  
Quality Standard ◽  
Self Management ◽  
Pharmaceutical Companies ◽  
National Audit ◽  
Advisory Boards ◽  
The Right ◽  
The Impact

Background:NRAS follows best practice, evidence-based standards in all we do. Whilst huge strides have been made in the diagnosis and treatment of RA, the impact on quality of life can be significant and for many this disease remains hard to come to terms with. NRAS services and resources can improve the outcomes of people with RA/Adult JIA through a framework of supported self-management resources tailored to individual need. It is particularly important to provide the right support at the beginning of a person’s journey with RA, when unhelpful health beliefs, anxiety and incorrect information can influence how someone responds to prescribed medication and treatment thus impeding their ability to achieve the best outcomes. We know, for example, that many people do not take their medication as prescribed which reduces their chances of achieving remission or low disease activity state.Objectives:To demonstrate that by referring patients online as part of a quality improvement programme to NRAS Right Start Service, we can show improved outcomes for patients with early RA when measured by the MSKHQ. Referred patients will benefit by: a) Better understanding what RA is; b) knowing how it can affect them; c) getting the right support; d) feeling more in control; receiving a tailored pack of information that meets their personal needs; e) be able to talk to a like-minded person who has lived with RA. It’s a 4 step process which starts with the health professional referring their patient to NRAS on line. NICE Quality Standard 3 states that “Adults with rheumatoid arthritis are given opportunities throughout the course of their disease to take part in educational activities that support self-management.” Our service enables health professionals to meet their responsibilities against this national quality standard.Methods:In preparation for the introduction of this service at BSR congress 2019, an audit of the NRAS helpline service was undertaken at the end of 2018 and remains on going. Currently we have 224 responses which have been analysed against specific criteria. An Advisory Board comprising 7 clincians, from different hospitals was appointed to work with NRAS on this important research.Results:In the helpline audit, when asked ‘how concerned are you about your disease’?, alarmingly, 78% of those surveyed scored their level of concern about their disease at 7 or higher out of 10, while only 8% scored it at 5 or below. When asked about the emotional effects of their RA, 62% scored it as 7 or more where 10 was the worst possible impact. 94% of survey respondents said that they would definitely or very likely recommend NRAS and its services to another person. These results led to the development of New2RA Right Start launched in 2019, whereby health professionals across the UK can refer their patients directly to NRAS via a consented online referral which is fully GDPR compliant. To date (31stJan, 2020), we have made calls to 101 patients, from 24 referring hospitals of which 55 have been successfully completed, 34 have had information sent through the post although our helpline team were unable to speak to them, and 12 remain open. Data analysis on the service is being carried out by King’s College Hospital London, comparing the results of patients who have been referred to Right Start within the national audit who have completed a baseline and 3 month follow up MSKHQ and patients in the audit who have not participated in Right Start.Conclusion:Anecdotally, we have had a tremendous response to this service from both patients and referring health professionals. We await data from King’s on the above figures, which we will have within the next 2 months and further data, should this abstract be accepted, will be available prior to June 2020. Right Start enables health professionals to comply with QS3 above, of the NICE Quality Standards in RA, one of the key standards against which they are being audited in the NEIAA national audit. Once data and write up in a peer review journal has been published we plan to roll this service out to people with more established disease.References:[1]To be done, not included in word count.Acknowledgments:I would like to thank Ailsa Bosworth MBE, Clare Jacklin, and James GallowayDisclosure of Interests:Iain McNicol Shareholder of: GSK, Ailsa Bosworth Speakers bureau: a number of pharmaceutical companies for reasons of inhouse training, advisory boards etc., Clare Jacklin Grant/research support from: NRAS has received grants from pharmaceutical companies to carry out a number of projects, Consultant of: I have been paid a speakers fee to participate in advisory boards, in house training of staff and health professional training opportunities, Speakers bureau: Various pharma companies, James Galloway: None declared

scholarly journals Engaging patients: how to speak so patients want to listen

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
S Rubinelli
Keyword(s):  
Health Professional ◽  
Lived Experience ◽  
Health Information ◽  
Health Professionals ◽  
Health Condition ◽  
Public Health Institutions ◽  
Health Institutions ◽  
Basic Approaches ◽  
The Impact

Abstract The paternalistic approach to health professional-patient communication is often no longer successful. The main reasons for this include the fact that trust in medicine and health professionals is no longer taken for granted. In many domains, the concepts of 'expert' and 'science' are in shadow. Moreover, patients can access all sorts of health information, including information that is or seems inconsistent with the advice given by their health professionals. This talk aims to illustrate some basic approaches to communication that can enhance health professional-patient interaction. First, health professionals should consider their communication with patients as a form of persuasion. Persuasion, that does not equal manipulation, is a way to communicate that takes into consideration the knowledge, beliefs, and attitudes of interlocutors. By adopting a person-centered style, health professionals should present their advice by contextualizing it into the emotional and cognitive setting of the patients. Second, communication should consider the lived experience of patients, that is the impact that a health condition or a preventive behavior has on their quality of life and their experience of pleasure. Indeed, managing health conditions is not just applying health advice: it often demands a change in lifestyles that can negatively impact how patients live their lives. Third, health professionals should develop clear strategies to engage with information that patients find from other sources. Health professionals must ask patients if they disagree with them, and to clarify any eventual difference of opinion. The information age has positively favored a democratization of health information. Yet, it imposes that health systems care for their communication. This talk concludes by presenting main evidence from on how to reinforce hospitals, public health institutions, and health services in communication so that patients want to listen.

scholarly journals Communication as a Key Issue in the Care of Diabetes Mellitus

2015 ◽  
Vol 22 (3) ◽  
pp. 305-310
Author(s):  
Elena-Daniela Grigorescu ◽  
Cristina Mihaela Lăcătuşu ◽  
Gina Eosefina Botnariu ◽  
Raluca Maria Popescu ◽  
Alina Delia Popa ◽  
...  
Keyword(s):  
Diabetes Mellitus ◽  
Medical Care ◽  
Modern Medicine ◽  
Therapeutic Education ◽  
Communicative Interaction ◽  
Patient Centered ◽  
Patient’S Satisfaction ◽  
Communication Techniques ◽  
Physician Patient ◽  
The Impact

Abstract The physician-patient communication has an essential role in establishing and supporting the relationship between these two partners. Moreover, modern medicine highlights the patient-centered approach. Publications assessing the impact of an efficient physicianpatient communication on medical care results in diseases such as diabetes and hypertension have revealed a positive correlation between patient’s satisfaction about the communication with the physician and values of blood pressure, glycated hemoglobin and pain intensity. Interventions needed in both doctors and patients for developing communication abilities were paid special attention in order to achieve an appropriate improvement in their communicative interaction during periodical appointments. In the field of diabetes mellitus, the medical challenge is to improve patients’ knowledge about medical care; this aim is achieved only by therapeutic education, using high-quality communication techniques.

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

scholarly journals Importance of effective collaboration between health professionals for the facilitation of optimal community diabetes care

2011 ◽  
Vol 17 (2) ◽  
pp. 150 ◽  
Author(s):  
Jo Melville-Smith ◽  
Garth E. Kendall
Keyword(s):  
Diabetes Care ◽  
Health Professionals ◽  
Survey Methodology ◽  
Daily Basis ◽  
Professional Support ◽  
Effective Management ◽  
Collaborative Relationships ◽  
Allied Health Professionals ◽  
Significant Burden ◽  
The Impact

Diabetes places a significant burden on the individuals concerned, their families and society as a whole. The debilitating sequelae of diabetes can be limited or prevented altogether through strict glycaemic control. Despite the seemingly uncomplicated nature of the disorder, effective management can be elusive, as the impact of having to deal with diabetes on a daily basis can be profound and appropriate professional support is not always readily available. As the roles of general practitioners (GPs) and allied health professionals have evolved, a major issue now facing all is that of developing and maintaining effective collaborative relationships for the facilitation of optimal community diabetes care. Using a simple survey methodology, the present exploratory study investigated the referral patterns of GPs to diabetic educators (DEs) working for a community health service in an Australian town, and reasons for referral and non-referral in order to identify factors that contribute to a sound and sustainable collaborative relationship. The results provide some evidence that GPs and DEs in this town do work collaboratively towards achieving client-centred goals and highlight the need to inform GPs who are new to communities, such as this one, of the available DE services. Most importantly, the study identified that there are many opportunities to strengthen collaboration so as to facilitate optimal community diabetes care. This information is valuable, because there is limited empirical evidence either nationally or internationally about the process of collaboration between health professionals in the management of chronic diseases, such as diabetes.

scholarly journals Self-care: Concept, Rationale, and Framework

2021 ◽  
pp. 1-7
Author(s):  
Saroj Pachauri ◽  
Ash Pachauri ◽  
Komal Mittal
Keyword(s):  
Health Services ◽  
Medical Care ◽  
Health Professionals ◽  
Self Care ◽  
Service Systems ◽  
Social Scientists ◽  
Curative Care ◽  
New Thinking ◽  
Technology Focus ◽  
The Impact

AbstractThe role and importance of self-care in the continuum of health care are becoming important subjects of debate among social scientists and health professionals. Interest in the self-care component of health services is stimulated by the convergence of diverse pressures common to health services systems. Depersonalized medical care, rising costs of high technology, focus on curative care, growth of lay knowledge, recognition of the limits of medical care, and documentation of the impact of the individual’s health behavior on patterns of morbidity are all factors stimulating new thinking regarding the importance of individuals and families to the effective and efficient functioning of health service systems.

Contextualising indicators of socio-economic status: Chronic illness as lived experience of SES

2003 ◽  
Vol 9 (3) ◽  
pp. 141 ◽  
Author(s):  
Christine Walker ◽  
Chris Peterson
Keyword(s):  
Chronic Disease ◽  
Chronic Illness ◽  
Lived Experience ◽  
Work Experience ◽  
Economic Status ◽  
Self Management ◽  
General Level ◽  
Low Ses ◽  
Socio Economic Status ◽  
The Impact

The concept of socio-economic status (SES) has been recognised as playing an important role in the incidence and experience of chronic illness (Taylor, 1983; Najman 1988; Syme, 1998; Marmot, 2000). Yet just how SES interacts with the experience of chronic illness has not been well researched. For example, researchers are unable to categorically state if living conditions and life opportunities associated with low SES lead to a greater propensity for developing a chronic illness, or if the experience and consequences of having a chronic illness lead to developing low SES characteristics, or both. Neither has research provided good data on the mediating roles of factors such as ethnic background and location of residence on the relationship between SES and chronic illness. Self-management programs for chronic disease require different capacities from participants to produce good outcomes. These capacities are to some degree dependent on level of education, type of job, and general level of socio-economic status. Therefore, the level of SES of people with a chronic disease is important to understanding how they will respond to self-management approaches. For example, people with a chronic disease from lower SES backgrounds can be expected in some instances to have a different set of coping capacities with their disease (partly a function of income, education, and work experience) compared to those from higher SES backgrounds. The socio-economic status of people with a chronic disease is an important area for investigation that has implications for the efficacy of self-management programs. This paper will argue that while SES is a vital concept in understanding the impact of chronic illness on people?s lived experiences for many conditions, current approaches oversimplify it by quarantining it from its context. Researchers tend to treat SES as a stable composite concept whose application illuminates the social basis of the illness experience. More frequently, we arrive at an explanation of simplified relationships rather than an explanation of the relationships between chronic ill health and SES as lived by members of real communities (Frank, 1990; Zola, 1991).

scholarly journals Toward Patient-Centered Cancer Care: Patient Perceptions of Problematic Events, Impact, and Response

2012 ◽  
Vol 30 (15) ◽  
pp. 1784-1790 ◽  
Author(s):  
Kathleen M. Mazor ◽  
Douglas W. Roblin ◽  
Sarah M. Greene ◽  
Celeste A. Lemay ◽  
Cassandra L. Firneno ◽  
...  
Keyword(s):  
Medical Care ◽  
Cancer Patients ◽  
Cancer Care ◽  
Information Exchange ◽  
Health Care Systems ◽  
Care Patient ◽  
Physician Patient Relationship ◽  
Patient Centered ◽  
Delay In Diagnosis ◽  
The Impact

Purpose Cancer treatments are complex, involving multiple clinicians, toxic therapies, and uncertain outcomes. Consequently, patients are vulnerable when breakdowns in care occur. This study explored cancer patients' perceptions of preventable, harmful events; the impact of these events; and interactions with clinicians after such events. Patients and Methods In-depth telephone interviews were conducted with cancer patients from three clinical sites. Patients were eligible if they believed: something “went wrong” during their cancer care; the event could have been prevented; and the event caused, or could have caused, significant harm. Interviews focused on patients' perceptions of the event, its impact, and clinicians' responses to the event. Results Ninety-three of 416 patients queried believed something had gone wrong in their care that was preventable and caused or could have caused harm. Seventy-eight patients completed interviews. Of those interviewed, 28% described a problem with medical care, such as a delay in diagnosis or treatment; 47% described a communication problem, including problems with information exchange or manner; and 24% described problems with both medical care and communication. Perceived harms included physical and emotional harm, disruption of life, effect on family members, damaged physician-patient relationship, and financial expense. Few clinicians initiated discussion of the problematic events. Most patients did not formally report their concerns. Conclusion Cancer patients who believe they experienced a preventable, harmful event during their cancer diagnosis or care often do not formally report their concerns. Systems are needed to encourage patients to report such events and to help physicians and health care systems respond effectively.

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