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Chronic Illness

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https://www.readbyqxmd.com/read/28783975/barriers-and-facilitators-to-epilepsy-self-management-for-patients-with-physical-and-psychological-co-morbidity
#1
Adam T Perzynski, Riane K Ramsey, Kari Colón-Zimmermann, Jamie Cage, Elisabeth Welter, Martha Sajatovic
Objectives This exploratory study identifies barriers and facilitators to self-management to inform future epilepsy self-management interventions for persons who have epilepsy complicated by co-morbid mental health conditions and serious medical events. Methods Focus group methods were used in a series of community advisory board meetings. Analysis was conducted using a thematic, constant comparative approach aiming to describe the range of barriers and facilitators salient to participants. There were a total of 22 participants, including 8 health professionals, 9 patients with epilepsy, and 5 care partners...
September 2017: Chronic Illness
https://www.readbyqxmd.com/read/28783974/a-novel-primary-specialist-care-collaborative-demonstration-project-to-improve-the-access-and-health-care-of-medically-complex-patients
#2
Henry Yu-Hin Siu, Nicole Steward, Jessica Peter, Laurel Cooke, Donald M Arnold, David Price
Objective Medically complex patients experience fragmented health care compounded by long wait times. The MedREACH program was developed to improve access and overall system experience for medically complex patients. Program description MedREACH is a novel primary-tertiary care collaborative demonstration program that features community nursing outreach, community specialist outreach, and a multi-specialty consultation clinic. Methods All 179 patients, referring primary care clinicians, and specialists involved were eligible to participate...
September 2017: Chronic Illness
https://www.readbyqxmd.com/read/27539955/living-with-uncertainty-and-hope-a-qualitative-study-exploring-parents-experiences-of-living-with-childhood-multiple-sclerosis
#3
Denise Hinton, Susan Kirk
Background There is growing recognition that multiple sclerosis is a possible, albeit uncommon, diagnosis in childhood. However, very little is known about the experiences of families living with childhood multiple sclerosis and this is the first study to explore this in depth. Objective Our objective was to explore the experiences of parents of children with multiple sclerosis. Methods Qualitative in-depth interviews with 31 parents using a grounded theory approach were conducted. Parents were sampled and recruited via health service and voluntary sector organisations in the United Kingdom...
June 2017: Chronic Illness
https://www.readbyqxmd.com/read/27358286/the-lived-experience-of-having-a-rare-medical-disorder-hermansky-pudlak-syndrome
#4
Stacy Christensen, Linda Wagner, Melissa M Coleman, Donna Appell
Hermansky-Pudlak Syndrome is a rare form of albinism, affecting approximately one in 500,000 to one in 1,000,000 non-Hispanic individuals. The syndrome is more commonly found in Hispanics, where one in 18,00 individuals in Northwestern Puerto Rico are impacted. Because of the rarity of this chronic condition, patients often face challenges in their ability to cope with the diagnosis. A phenomenological study was conducted to explore the experience of individuals with this rare genetic disease. A purposive sample of adults between the ages of 20 and 49 diagnosed with Hermansky-Pudlak Syndrome was interviewed (N = 23)...
March 2017: Chronic Illness
https://www.readbyqxmd.com/read/27343016/living-a-secret-disclosure-among-adolescents-and-young-adults-with-chronic-illnesses
#5
Daniel Kaushansky, Jarad Cox, Chaka Dodson, Miles McNeeley, Sinthu Kumar, Ellen Iverson
Objectives This qualitative study examines how and why adolescents living with visible and invisible chronic illnesses choose to share their condition with individuals within their social environments. Methods A sample of 25 adolescents were recruited from five subspecialty services: Spina bifida, rheumatology, cardiology, cystic fibrosis, and renal transplant/dialysis. Recruits completed a semi-structured interview designed to explore: (1) to whom adolescents disclose their conditions, (2) motivation and conditions under which they disclose, (3) content of disclosure, and (4) barriers to disclosure...
March 2017: Chronic Illness
https://www.readbyqxmd.com/read/27269506/attachment-in-medical-care-a-review-of-the-interpersonal-model-in-chronic-disease-management
#6
Xavier F Jimenez
Objective Patient-physician interaction is continually examined in an era prioritizing patient-centered approaches, yet elaboration beyond aspects of communication and empathy is lacking. Major chronic conditions would benefit tremendously from understanding interpersonal aspects of patient-physician encounters. This review intends to provide a concise introduction to the interpersonal model of attachment theory and how it informs both the patient-physician interaction and medical outcomes in chronic care. Methods A narrative review of the theoretical, neurobiological, epidemiological, investigational, and clinical literature on attachment theory and its impact on medical outcomes was conducted, utilizing a variety of key words as searched on PubMed database...
March 2017: Chronic Illness
https://www.readbyqxmd.com/read/28803493/health-related-quality-of-life-of-people-with-multimorbidity-at-a-community-based-interprofessional-student-assisted-clinic-implications-for-assessment-and-intervention
#7
Zephanie Tyack, Suzanne Kuys, Petrea Cornwell, Kerrie-Anne Frakes, Steven McPhail
Objective This study examined the relationship between the number of comorbidities and health-related quality of life (HRQoL) and between select physical conditions and HRQoL. Differences in HRQoL in comparison to a normative sample were also examined. Method A cross-sectional study among people with multimorbidity ( n = 401) attending a community-based, interdisciplinary health clinic was conducted. HRQoL was measured using the eight dimensions of the SF-36. Multiple linear regression and t-tests were used to analyse the data...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28762776/diabetes-management-in-senegalese-families-a-dyadic-narrative-illustration
#8
R BeLue, K Ndiaye, P Y Miranda, F Ndao, P Canagarajah
Objectives In many Sub-Saharan African cultures, diabetes self-management behaviors such as dietary adherence do not occur in isolation but are carried out in the context of local culture, a significant factor in shaping those health behaviors. Methods Using a family-based narrative approach, we explore how Senegalese families manage diabetes. We interviewed twenty people living with diabetes and selected family caregivers from MBour, Senegal. Results We found that people living with diabetes experienced physical, emotional, and financial stressors as a result of managing their condition...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28762775/diagnostic-experience-of-patients-with-fibromyalgia-a-meta-ethnography
#9
Anne Marit Mengshoel, Julius Sim, Birgitte Ahlsen, Sue Madden
Objective To examine how individuals experience the process and consequences of receiving a diagnosis of fibromyalgia syndrome. Methods A systematic literature search of qualitative studies up to May 2016 was performed. Twenty-eight reports including information on patients' diagnostic experiences were subjected to an interpretive analysis in accordance with the principles of meta-ethnography. Results Years were normally spent consulting specialists in an attempt to confirm the reality of symptoms and make sense of the illness...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28705011/the-experiences-and-beliefs-of-patients-with-complex-regional-pain-syndrome-an-exploratory-survey-study
#10
Adriaan Louw, Kory Zimney, Terry Cox, Christine O'Hotto, Craig A Wassinger
Objectives To determine the beliefs and describe the health care experiences of patients with complex regional pain syndrome. Methods A survey tool for patients with complex regional pain syndrome was designed for this study. The survey tool collected self-reported measures associated with pain, disability, health care experiences, education, beliefs, and treatments. Results Thirty-one patients attending physical therapy for complex regional pain syndrome (mean age 40.48; female n = 20) completed the survey...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28669227/understanding-untreated-hypertension-from-patients-point-of-view-a-qualitative-study-in-rural-yogyakarta-province-indonesia
#11
Riana Rahmawati, Beata Bajorek
Objectives This study aimed to explore perspectives about hypertension from patients who do not take anti-hypertensive medications. Factors that shape their perspectives as well as patients' expectations were also canvassed. Method Individual, face-to-face interviews were conducted with 30 people (≥45 years old) living in rural villages, diagnosed with hypertension, who had not taken any anti-hypertensive medications for at least one year. Interviews were audiotaped, transcribed verbatim and thematically analysed...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28661195/optimising-mindfulness-based-stress-reduction-for-people-with-multiple-sclerosis
#12
Robert Simpson, Sharon Byrne, Karen Wood, Frances S Mair, Stewart W Mercer
Objectives To gather views from patients with multiple sclerosis after completing a standard eight-week mindfulness-based stress reduction course and optimise and test a modified version as required. Methods Two successive groups of 25 multiple sclerosis patients received mindfulness-based stress reduction in a wait-list randomised controlled trial. Seventeen participants and two mindfulness-based stress reduction instructors were individually interviewed after the first (standard) course and 16 participants and the same two instructors were interviewed following the second (optimised) course...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28661194/critical-moments-in-long-term-condition-management-a-longitudinal-qualitative-social-network-study
#13
Rebecca L Morris, Caroline Sanders
Objectives Recent literature has demonstrated the nature and importance of social networks. This study aimed to understand how support needs of people with long-term conditions change over time and how this influences their ability to self-manage. Methods A longitudinal qualitative design was used to explore changes in individual's social networks over a period of year. Thirty participants were recruited and completed initial in-depth face-to-face interviews, telephone follow-ups, and final face-to-face interviews...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28661193/-you-want-to-show-you-re-a-valuable-employee-a-critical-discourse-analysis-of-multi-perspective-portrayals-of-employed-women-with-fibromyalgia
#14
Margaret Oldfield, Ellen MacEachen, Margaret MacNeill, Bonnie Kirsh
Background Advice on fibromyalgia, a chronic illness primarily affecting women, often presents it as incompatible with work and rarely covers how to remain employed. Yet many women do. Objectives We aimed to understand how these women, their family members, and workmates portrayed employees with fibromyalgia, and how these portrayals helped women retain employment. Methods We interviewed 22 participants, comprising five triads and three dyads of people who knew each other. Using the methodology of critical discourse analysis, we analysed the interview data within and across the triads/dyads through coding, narrative summaries, and relational mapping...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28530114/patients-and-healthcare-professionals-perceptions-of-self-management-support-interactions-systematic-review-and-qualitative-synthesis
#15
Marika Franklin, Sophie Lewis, Karen Willis, Helen Bourke-Taylor, Lorraine Smith
Objective To review studies examining the experience of self-management support in patient-provider interactions and the shaping of goals through interactions. Methods We undertook a systematic review and thematic synthesis of the qualitative literature. We searched six databases (2004-2015) for published studies on the provision of self-management support in one-to-one, face-to-face, patient-provider interactions for obesity, type 2 diabetes mellitus and chronic obstructive pulmonary disease, with 14 articles meeting inclusion criteria...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28449592/-i-had-to-change-so-much-in-my-life-to-live-with-my-new-limitations-multimorbid-patients-descriptions-of-their-most-bothersome-chronic-conditions
#16
Cindie A Slightam, Kirsten Brandt, Emily C Jenchura, Eleanor T Lewis, Steven M Asch, Donna M Zulman
Objective To characterize diseases that are described as most bothersome by individuals with multiple chronic conditions and to identify themes that characterize their experiences with their most bothersome condition. Methods In a survey of patients at an academic center and a Veterans Affairs hospital, we asked individuals with multiple chronic conditions to identify their most bothersome chronic condition and describe why it is challenging. Standard content analysis methods were used to code responses and identify themes reflecting characteristics of most bothersome conditions...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28441882/work-right-to-right-work-an-automythology-of-chronic-illness-and-work
#17
Lavanya Vijayasingham
Objectives Chronic illness is known to disrupt and redirect the usual course of work trajectories. This article aims to portray the longitudinal course of negotiating work after multiple sclerosis. Methods Using therapy and personal journals to reconstruct memories and experience, an autoethnography is produced and narrated within Campbell's "Hero's Journey" automythology framework. Results The narrative highlights the intrasubjectivity of illness meaning-the changing internal meaning-making and external behavior and decision-making dynamics...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28403636/a-content-analysis-of-chronic-fatigue-syndrome-and-myalgic-encephalomyelitis-in-the-news-from-1987-to-2013
#18
Zachary A Siegel, Abigail Brown, Andrew Devendorf, Johanna Collier, Leonard A Jason
Objectives The aim of this study was to analyze the content of American newspaper articles ( n=214) from 1987 to 2013, in order to understand how the public digests information related to Chronic Fatigue syndrome, a controversial and misunderstood illness. Methods A novel codebook derived from the scientific literature was applied to 214 newspaper articles collected from Lexis Nexis Academic®. These articles were coded quantitatively and frequency tables were created to delineate the variables as they appeared in the articles...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28133992/the-family-impact-of-caring-for-a-child-with-juvenile-dermatomyositis
#19
Samantha Kountz-Edwards, Christa Aoki, Caitlin Gannon, Rowena Gomez, Matthew Cordova, Wendy Packman
Background Juvenile dermatomyositis (JDM), a rare autoimmune disease, accounts for more than 80% of idiopathic inflammatory myopathy childhood cases, making it the most common idiopathic inflammatory myopathy among children. The average age of onset is approximately 7 years and commonly leads a chronic course. Symptoms of JDM include cutaneous features (Gottron's rash, heliotrope rash, or nail fold capillary changes), musculoskeletal features, calcinosis and lipodystrophy (a symmetrical deficit of subcutaneous fatty tissue), and acanthosis (thickening of the skin)...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28133991/readiness-to-participate-in-advance-care-planning-a-qualitative-study-of-renal-failure-patients-families-and-healthcare-providers
#20
Lauren A Hutchison, Donna S Raffin-Bouchal, Charlotte A Syme, Patricia D Biondo, Jessica E Simon
Objectives Advance care planning is the process by which people reflect upon their wishes and values for healthcare, discuss their choices with family and friends and document their wishes. Readiness represents a key predictor of advance care planning participation; however, the evidence for addressing readiness is scarce within the renal failure context. Our objectives were to assess readiness for advance care planning and barriers and facilitators to advance care planning uptake in a renal context. Methods Twenty-five participants (nine patients, nine clinicians and seven family members) were recruited from the Southern Alberta Renal Program...
January 1, 2017: Chronic Illness
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