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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
Victoria L Solomi, Rachel E Casiday
OBJECTIVES: To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. METHODS: Mixed-methods exploratory study involving questionnaires (N = 40) and in-depth interviews (N = 8) with spousal carers in the southwest of England. RESULTS: Participants used a combination of negative and positive terms to describe their experiences, with the cared-for spouse's mental acuity, behavior towards the carer, and amount of care required, impacting on carers' subjective experience...
August 17, 2016: Chronic Illness
Mark Ac van Haaren, Melinda Reyme, Maggie Lawrence, Jack Menke, Ad A Kaptein
OBJECTIVE: Leprosy has rarely been the subject of health psychology research despite its substantial impact. Our aim was to explore illness perceptions in patients and their health care providers in Surinam. The Common Sense Model (CSM) was the guiding theoretical model. DESIGN: Patients with biomedically cured leprosy and their health care providers completed the B-IPQ and took part in semi-structured interviews. The literature on illness perceptions in patients with leprosy was reviewed...
July 5, 2016: Chronic Illness
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)...
June 29, 2016: Chronic Illness
Paul D Loprinzi, Eveleen Sng, Jerome F Walker
OBJECTIVE: Emerging research suggests that aerobic-based physical activity may help to promote survival among chronic obstructive pulmonary disease patients. However, the extent to which engagement in resistance training on survival among chronic obstructive pulmonary disease patients is relatively unknown. Therefore, the purpose of this study was to examine the independent associations of muscle strengthening activities on all-cause mortality among a national sample of U.S. adults with chronic obstructive pulmonary disease...
June 29, 2016: 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...
June 24, 2016: Chronic Illness
Loren Saulsberry, Robert J Blendon, John M Benson
OBJECTIVE: To examine the life experiences of African American and Hispanic adults whose personal chronic illness and/or that of a family member is the biggest health problem for their families. DATA SOURCE: Telephone (landline and cell phone) interviews of random, nationally representative samples of 1081 African-American and 1478 Hispanic adults, age 18 and older. We evaluated the responses of 757 African-American and 697 Hispanic participants who reported a chronic illness as the biggest health problem in their families...
June 22, 2016: Chronic Illness
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...
June 6, 2016: Chronic Illness
Nathalie Duroseau, Tobi Ambramson, Kathleen Pergament, Vivian Chan, John Paul Govindavari, Christina Ciraco, David Tegay, Bhuma Krishnamachari
OBJECTIVES: Parkinson's disease is the second most common neurodegenerative movement disorder in the United States. Patients' opinions of technology-based tools for education and communication as related to Parkinson's disease are unclear with little documented research addressing the issue. The goal of this research was to investigate patient opinions about technology-based tools with a focus on differences between patients of different age groups. METHODS: A cross-sectional survey was used to assess views on using multiple different electronic methods for receiving instructions and communicating with healthcare providers in 109 Parkinson's disease patients...
June 5, 2016: Chronic Illness
Paul D Loprinzi
Limited research has examined the association of muscle-strengthening activities and executive cognitive function among older adults, which was this study's purpose. Data from the 1999-2002 NHANES were employed (N = 2157; 60-85 years). Muscle-strengthening activities were assessed via self-report, with cognitive function assessed using the digit symbol substitution test. After adjusting for age, age-squared, gender, race-ethnicity, poverty level, body mass index, C-reactive protein, smoking, comorbid illness and physical activity, muscle-strengthening activities were significantly associated with cognitive function (βadjusted = 3...
June 2016: Chronic Illness
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