Genetic explanations, discrimination and chronic illness: A qualitative study on hereditary haemochromatosis in Germany
The objective of this study is to explore the discriminatory impacts of genetic diagnosis for people living with the chronic illness of hereditary haemochromatosis in Germany.
Methods
Semi-structured interviews with 15 patients; all had tested positive for a genetic mutation associated with haemochromatosis and already displayed symptoms of the disease. Inductive approach, with interviews collaboratively interpreted by the research group in a vertical and horizontal analysis informed by a multi-person perspective.
Results
First, as the genetic diagnosis of the disease holds the promise of therapeutic intervention, the in...
Source: Chronic lllness - November 15, 2016 Category: Journals (General) Authors: Manz, U. Tags: Articles Source Type: research
Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome
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. ANOVAs and, where appropriate, MANCOVAS were used to compare housebound and nonhousebound patients with m...
Source: Chronic lllness - November 15, 2016 Category: Journals (General) Authors: Pendergrast, T., Brown, A., Sunnquist, M., Jantke, R., Newton, J. L., Strand, E. B., Jason, L. A. Tags: Articles Source Type: research
Challenges confronting African Americans and Hispanics living with chronic illness in their families
Discussion
Policymakers and clinicians should be aware that some African-American and Hispanic patients face obstacles within and beyond the health care system that are relevant to how they live with chronic conditions affecting their families. Additional tools and supports may need to be identified and supplied to effectively manage chronic illness in these communities. The payment system for physicians should account for the supplementary supports and services these patients might require. (Source: Chronic lllness)
Source: Chronic lllness - November 15, 2016 Category: Journals (General) Authors: Saulsberry, L., Blendon, R. J., Benson, J. M. Tags: Articles Source Type: research
Multimorbidity, mortality, and physical activity
Discussion
With the exception of those who engaged in high levels of self-reported physical activity, physical activity had a minimal effect on the multimorbidity–mortality relationship. (Source: Chronic lllness)
Source: Chronic lllness - November 15, 2016 Category: Journals (General) Authors: Loprinzi, P. D., Addoh, O., Joyner, C. Tags: Articles Source Type: research
Adding the patients voice to our understanding of collaborative goal setting: How do patients with diabetes define collaborative goal setting?
Conclusions
Patients perceived collaborative goal setting as a multidimensional process that occurs over time within the context of a caring relationship and encompasses distinct patient and clinician responsibilities. (Source: Chronic lllness)
Source: Chronic lllness - November 15, 2016 Category: Journals (General) Authors: Morris, H. L., Carlyle, K. E., Elston Lafata, J. Tags: Articles Source Type: research
Worry and time: the unseen costs of informal care
The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally?
Methods
Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken.
Results
Twenty-five informal carers participate...
Source: Chronic lllness - November 15, 2016 Category: Journals (General) Authors: Jowsey, T., Strazdins, L., Yen, L. Tags: Articles Source Type: research
Burden, quality of life, and social support in caregivers of patients undergoing radiotherapy for head and neck cancer: A pilot study
Discussion
These pilot findings suggest that caregivers experience psychosocial impairments during and shortly after patient radiotherapy, but more research using larger samples is warranted. (Source: Chronic lllness)
Source: Chronic lllness - August 21, 2016 Category: Journals (General) Authors: Nightingale, C. L., Curbow, B. A., Wingard, J. R., Pereira, D. B., Carnaby, G. D. Tags: Articles Source Type: research
High satisfaction and low decisional conflict with advance care planning among chronically ill patients with advanced chronic obstructive pulmonary disease or heart failure using an online decision aid: A pilot study
Discussion
Patients with advanced heart failure and chronic obstructive pulmonary disease were highly satisfied after using an online advance care planning decision aid and had increased knowledge of advance care planning. This tool can be a useful resource for time-constrained clinicians whose patients wish to engage in advance care planning. (Source: Chronic lllness)
Source: Chronic lllness - August 21, 2016 Category: Journals (General) Authors: Van Scoy, L. J., Green, M. J., Dimmock, A. E., Bascom, R., Boehmer, J. P., Hensel, J. K., Hozella, J. B., Lehman, E. B., Schubart, J. R., Farace, E., Stewart, R. R., Levi, B. H. Tags: Articles Source Type: research
"I dont like talking about it because thats not who I am": Challenges children face during epilepsy-related family communication
Discussion
The study highlights the need for a greater understanding of parent–child dialogue surrounding epilepsy and where challenges lie for children in conversing about their condition. Parents and health care professionals play a pivotal role in facilitating an environment where children feel comfortable talking about epilepsy. This information will be instrumental in the development of a communication-based intervention for families living with epilepsy. (Source: Chronic lllness)
Source: Chronic lllness - August 21, 2016 Category: Journals (General) Authors: OToole, S., Lambert, V., Gallagher, P., Shahwan, A., Austin, J. Tags: Articles Source Type: research
Family behaviors and type 2 diabetes: What to target and how to address in interventions for adults with low socioeconomic status
Discussion
Findings can inform the design and content of interventions targeting family involvement in adults’ type 2 diabetes, with implications for assessing family behaviors, intervention modalities, and who to engage. (Source: Chronic lllness)
Source: Chronic lllness - August 21, 2016 Category: Journals (General) Authors: Mayberry, L. S., Harper, K. J., Osborn, C. Y. Tags: Articles Source Type: research
Family members or friends involvement in self-care for patients with depressive symptoms and co-morbid chronic conditions
Discussion
Patients engaged in a self-care intervention for depressive symptoms use more self-care materials when they perceive F/F involvement in the intervention. Patients and F/F may perceive involvement differently and benefit from discussions about potential F/F roles. (Source: Chronic lllness)
Source: Chronic lllness - August 21, 2016 Category: Journals (General) Authors: Sussman, T., Mccusker, J., Yaffe, M., Belzile, E., Sewitch, M., Cole, M., Strumpf, E. Tags: Articles Source Type: research
The development and optimisation of a primary care-based whole system complex intervention (CARE Plus) for patients with multimorbidity living in areas of high socioeconomic deprivation
Discussion
We have co-designed and optimised an augmented primary care intervention involving a whole-system approach to enhance quality of life in multimorbid patients living in the deprived areas. CARE Plus will next be tested in a phase 2 cluster randomised controlled trial. (Source: Chronic lllness)
Source: Chronic lllness - August 21, 2016 Category: Journals (General) Authors: Mercer, S. W., O'Brien, R., Fitzpatrick, B., Higgins, M., Guthrie, B., Watt, G., Wyke, S. Tags: Articles Source Type: research
Epidemiological investigation of muscle-strengthening activities and cognitive function among older adults
In conclusion, muscle-strengthening activities are associated with executive cognitive function among older U.S. adults, underscoring the importance of promoting both aerobic exercise and muscle-strengthening activities to older adults. (Source: Chronic lllness)
Source: Chronic lllness - May 12, 2016 Category: Journals (General) Authors: Loprinzi, P. D. Tags: Short Report Source Type: research
The use of dialogue tools to promote dialogue-based and person-centred patient education for people with type 2 diabetes
Discussion
The application of dialogue tools to engender participatory patient education is highly dependent on educators’ and participants’ understanding and use of dialogue tools in practice. This implies that substantial educator skills are needed to facilitate dialogue and participation in patient education. (Source: Chronic lllness)
Source: Chronic lllness - May 12, 2016 Category: Journals (General) Authors: Jensen, N. K., Pals, R. A., Willaing, I. Tags: Articles Source Type: research
Social interaction in type 2 diabetes computer-mediated environments: How inherent features of the channels influence peer-to-peer interaction
Conclusions
Individuals interact with peers to obtain relevant, situation-specific information and knowledge about managing their own care. Computer-mediated environments facilitate the ability of individuals to exchange this information despite temporal or geographical barriers that may be present, thus improving T2D self-management. (Source: Chronic lllness)
Source: Chronic lllness - May 12, 2016 Category: Journals (General) Authors: Lewinski, A. A., Fisher, E. B. Tags: Articles Source Type: research
