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Chronic Illness

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
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
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
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
Zachary A Siegel, Abigail Brown, Andrew Devendorf, Johanna Collier, A Leonard 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
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
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
Elizabeth C Cummings, Gerrit I van Schalkwyk, Beth Dg Grunschel, Mary K Snyder, Larry Davidson
Objectives Patients with chronic back pain encounter considerable psychological and social challenges. In particular, the ever-evolving relationship between chronic back pain, sense of self-efficacy, and perceived role in interpersonal relationships merits further investigation. Methods We conducted in-person semi-structured interviews with 20 adult patients attending a specialized interventional spine pain clinic. The interview transcripts were subjected to inductive thematic analysis, and themes were labeled descriptively...
January 1, 2017: Chronic Illness
Tricia Pendergrast, Abigail Brown, Madison Sunnquist, Rachel Jantke, Julia L Newton, Elin Bolle Strand, Leonard A Jason
OBJECTIVES: The objective of this study was to examine individuals with myalgic encephalomyelitis and chronic fatigue syndrome who are confined to their homes due to severe symptomatology. The existing literature fails to address differences between this group, and less severe, nonhousebound patient populations. METHODS: Participants completed the DePaul Symptom Questionnaire, a measure of myalgic encephalomyelitis and chronic fatigue syndrome symptomology, and the SF-36, a measure of health impact on physical/mental functioning...
December 2016: Chronic Illness
Meredith Vanstone, Alex Rewegan, Francesca Brundisini, Mita Giacomini, Sujane Kandasamy, Deirdre DeJean
OBJECTIVES: Diet modification is an important part of the prevention and treatment of type 2 diabetes, but sustained dietary change remains elusive for many individuals. This paper describes and interprets the barriers to diet modification from the perspective of people with type 2 diabetes, paying particular attention to the experiences of people who experience social marginalization. METHODS: A systematic review of primary, empirical qualitative research was performed, capturing 120 relevant studies published between 2002 and 2015...
November 24, 2016: Chronic Illness
Kathy L Rush, Nelly D Oelke, Matt Shay, Chloe Pedersen
OBJECTIVES: Obtaining the voices of older adult patients with atrial fibrillation (AF) about their health and healthcare has become increasingly important in providing quality care. The purpose of this study was to understand the unique contributions of photographs in the healthcare journeys of rural living older adults with AF. METHODS: As part of a larger mixed methods study 10 older adults with AF living in rural communities were recruited through two rural primary care physicians' practices...
September 27, 2016: Chronic Illness
Severina Haugvik, David Beran, Pamela Klassen, Akhtar Hussain, Ane Haaland
AIMS: To explore and describe perceptions and experiences of living with type 1 Diabetes Mellitus among children/youths in Tajikistan. METHODS: Qualitative methods were employed. Participants were recruited through purposive and snowball samplings. Data were collected using a semi-structured interview guide with children/youths having diabetes, their parents as well as health professionals. Data were analyzed according to Malterud's systematic text condensation...
September 10, 2016: Chronic Illness
Lindsay Satterwhite Mayberry, Kryseana J Harper, Chandra Y Osborn
OBJECTIVES: Diabetes-specific family behaviors are associated with self-care and glycemic control among adults with type 2 diabetes. Formative research is needed to inform assessment of these behaviors and interventions to address obstructive family behaviors (sabotaging and nagging/arguing), particularly among racial/ethnic minorities and low-income adults who struggle most with self-care adherence. METHODS: We conducted a mixed-methods study with adults with type 2 diabetes at a Federally Qualified Health Center to better understand experiences with diabetes-specific family behaviors and willingness to engage family members in diabetes interventions...
September 2016: Chronic Illness
Stewart William Mercer, Rosaleen O'Brien, Bridie Fitzpatrick, Maria Higgins, Bruce Guthrie, Graham Watt, Sally Wyke
OBJECTIVES: To develop and optimise a primary care-based complex intervention (CARE Plus) to enhance the quality of life of patients with multimorbidity in the deprived areas. METHODS: Six co-design discussion groups involving 32 participants were held separately with multimorbid patients from the deprived areas, voluntary organisations, general practitioners and practice nurses working in the deprived areas. This was followed by piloting in two practices and further optimisation based on interviews with 11 general practitioners, 2 practice nurses and 6 participating multimorbid patients...
September 2016: Chronic Illness
S O'Toole, V Lambert, P Gallagher, A Shahwan, J K Austin
OBJECTIVES: Childhood epilepsy not only significantly impacts a child's social relationships and psychosocial wellbeing, but it can also cause disruptions in family relations. Children living with epilepsy often rely on parental figures for guidance in relation to their condition. A paucity of research has examined the challenges for children when communicating about epilepsy with parental figures. This qualitative study explored the challenges faced by children when talking about epilepsy with their parent(s)...
September 2016: Chronic Illness
Chandylen L Nightingale, Barbara A Curbow, John R Wingard, Deidre B Pereira, Giselle D Carnaby
OBJECTIVE: The purpose of this pilot study was to (1) obtain preliminary data on changes in burden and quality of life in head and neck cancer caregivers during and shortly following patient radiotherapy, (2) assess the relationship between perceived social support and burden as well as perceived social support and quality of life in caregivers during radiotherapy, and (3) identify preferences for sources of support among caregivers during radiotherapy. METHODS: Caregivers completed burden and quality of life instruments at the start of patient radiotherapy (T1), 5 weeks into radiotherapy (T2), and 1 month post-radiotherapy (T3) and instruments for perceived social support and support preferences at T2 only...
September 2016: Chronic Illness
Lauren J Van Scoy, Michael J Green, Anne Ef Dimmock, Rebecca Bascom, John P Boehmer, Jessica K Hensel, Joshua B Hozella, Erik B Lehman, Jane R Schubart, Elana Farace, Renee R Stewart, Benjamin H Levi
OBJECTIVE: Many patients with chronic illnesses report a desire for increased involvement in medical decision-making. This pilot study aimed to explore how patients with exacerbation-prone disease trajectories such as advanced heart failure or chronic obstructive pulmonary disease experience advance care planning using an online decision aid and to compare whether patients with different types of exacerbation-prone illnesses had varied experiences using the tool. METHODS: Pre-intervention questionnaires measured advance care planning knowledge...
September 2016: Chronic Illness
Tamara Sussman, Jane Mccusker, Mark Yaffe, Eric Belzile, Maida Sewitch, Martin Cole, Erin Strumpf
OBJECTIVES: To describe the support that patients reported receiving from family or friends (F/F) while participating in a self-care intervention for depressive symptoms; examine associations between patient-reported F/F support and use of self-care materials; and describe F/F perceptions of involvement in a subsample of F/F. METHODS: One hundred eighty-nine of 223 (85%) patients aged 40+ with chronic physical conditions and co-morbid depressive symptoms participating in a randomized self-care intervention trial, completed structured telephone surveys at three months about the F/F support received...
September 2016: Chronic Illness
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...
August 17, 2016: Chronic Illness
Amanda Jenkinson, Mary A Cantrell
OBJECTIVES: This literature review summarizes research relevant to the meaning of inner strength in females living with a chronic illness. This review also examined studies that have used The Inner Strength Questionnaire to examine inner strength among chronically ill females. METHODS: Using the search terms inner strength and women, CINAHL, PubMed, and ProQuest Nursing databases were searched for the years 1990-2016. Ten articles met the inclusion criteria. RESULTS: Inner strength in women is a mental health construct that women can encompass to positively affect their quality of life while living through challenging life events...
August 17, 2016: Chronic Illness
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