scholarly journals Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

BMC Neurology ◽  
2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Radka Bužgová ◽  
Radka Kozáková
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Emotional Support ◽  
Qualitative Methodology ◽  
Neurological Diseases ◽  
Open Communication ◽  
Depth Interviews ◽  
The Way

Abstract Background Progressive neurological diseases, such as multiple sclerosis, Parkinson’s disease, Huntington’s disease, significantly interfere with patients’ lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients’ health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases. Methods Qualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding. Results It was determined that adequate information about patients’ health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome. Conclusion Our results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.

scholarly journals Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

2019 ◽  
Author(s):  
Radka Bužgová ◽  
Radka Kozáková
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Emotional Support ◽  
Qualitative Methodology ◽  
Neurological Diseases ◽  
Open Communication ◽  
Depth Interviews ◽  
The Way

Abstract Background Progressive neurological diseases, such as multiple sclerosis, Parkinson's disease, Huntington's disease, significantly interfere with patients' lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients' health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases.Methods Qualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding.Results It was determined that adequate information about patients’ health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome.Conclusion Our results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.

scholarly journals Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

2019 ◽  
Author(s):  
Radka Bužgová ◽  
Radka Kozáková
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Emotional Support ◽  
Qualitative Methodology ◽  
Neurological Diseases ◽  
Open Communication ◽  
Depth Interviews ◽  
The Way

Abstract Background Progressive neurological diseases, such as multiple sclerosis, Parkinson's disease, Huntington's disease, significantly interfere with patients' lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients' health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases. Methods Qualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding. Results It was determined that adequate information about patients’ health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome. Conclusion Our results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.

Relationship of sense of coherence to stressful events, coping strategies, health status, and quality of life in women with breast cancer

2011 ◽  
Vol 22 (1) ◽  
pp. 20-27 ◽  
Author(s):  
Elisabeth Kenne Sarenmalm ◽  
Maria Browall ◽  
L.-O. Persson ◽  
J. Fall-Dickson ◽  
Fanny Gaston-Johansson
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Sense Of Coherence ◽  
Stressful Events ◽  
Relationship Of

Approaches to Craniofacial-Specific Quality of Life Assessment in Adolescents

2005 ◽  
Vol 42 (1) ◽  
pp. 19-24 ◽  
Author(s):  
Todd C. Edwards ◽  
Donald L. Patrick ◽  
Tari D. Topolski ◽  
Cassandra L. Aspinall ◽  
Wendy E. Mouradian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adult ◽  
Focus Group ◽  
Qualitative Methodology ◽  
Medical Center ◽  
Life Assessment ◽  
Psychometric Validation ◽  
Life Instrument ◽  
Depth Interviews

Objective To ascertain the domains that adolescents aged 11 to 18 years with congenital and acquired craniofacial differences (CFDs) consider important to their quality of life (QoL) to create a craniofacial-specific module. Design Interviews and inductive qualitative methods were used to guide the development of a conceptual and measurement model of QoL among adolescents with CFDs. Setting The Craniofacial Center at Children's Hospital and Regional Medical Center in Seattle, Washington. Patients, Participants Thirty-three in-depth interviews with adolescents (aged 11 to 18 years), one young adult interview (age 19 years), 14 in-depth interviews with parents, one young adult focus group, one parent focus group, and one panel of researchers and clinical professionals working in the field. Results Using the qualitative methodology, grounded theory, seven domains that adolescents with CFDs perceive are important to having a good QoL were found. Six of the domains (coping, stigma and isolation, intimacy and trust, positive consequences, self-image, and negative emotions) comprised the Youth Quality of Life Instrument–Facial Differences module. One other domain, surgery, was a salient issue for many of the youth, but not all, so it was made into a separate module, the Youth Quality of Life Instrument– Craniofacial Surgery module. This module relates to the experience of surgery, outcomes of surgery, and preferences for future surgery. Conclusions Using an established qualitative methodology, two QoL modules specific to adolescents with CFDs were developed and are ready for psychometric validation. Potential uses of the instruments are discussed.

scholarly journals Diet barriers in type 2 diabetic patients and their coping strategies

2019 ◽  
Vol 47 (2) ◽  
pp. 98-111
Author(s):  
E. G. Starostina
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Social Status ◽  
Trait Anxiety ◽  
Educational Level ◽  
Diabetes Treatment ◽  
Level Of Knowledge

Background: Factors hindering effective nutritional therapy (diet barriers, DB) in type 2 diabetes mellitus (DM2), their coping strategies and association with biomedical and psychosocial characteristics of the Russian patients have not been studied.Aim: To identify the role and clinical correlates of DB and diet coping in various categories of patients with DM2.Materials and methods: This cross-sectional cohort study included 297 consecutively recruited out- and in-patients with DM2 (mean age 61±10.1 years, diabetes duration 1 to 35 years). All patients had standard clinical and laboratory assessments and filled in questionnaires on DB, diet coping, level of knowledge on DM, state/trait anxiety scale, depression scale (modified Zung), Diabetes Treatment Satisfaction questionnaire (DTSQ), Audit of Diabetes-dependent Quality of Life questionnaire (Ru-ADDoQL). Mann-Whitney, chi-square and Fischer's exact test were used for group comparisons. Final analysis was based on multiple and logistic regression models.Results: Mean (±SD) number of DB per patient was 8.4±4.9 and similar in insulin-treated and non-insulin-treated patients. The most prevalent were DB related to poor physical well-being (51% of the patients), additional financial burden (54%) and decreased food variety (41%). The highest weighted prevalence was identified for 6 DB, such as “difficulties to adhere to the diet in unexpected situations” (1.8 scores), “having to spend a lot for the diet” (1.4), “if I eat not regularly, I feel unwell”, “I cannot eat tasty foods and enjoy them” (1.3  each), “when I  eat more than I  am allowed, I feel unwell”, “I would like to eat what it is not allowed for me” (1.2 each), and “it is difficult to fully abstain from sweets” (1.1). Number of DB per patient increased significantly with age and decreased with higher educational level and social status. There were differences in types of DB between male and female patients, between those currently employed and non-employed, and between highly compliant and non-compliant to their diabetes regimen. There was an inverse correlation between DB numbers and total dietary adherence score, diabetes-dependent quality of life score, subjective assessment of personal health status and a direct correlation between DB number and trait anxiety. No impact of past participation in a diabetes education program or of the level of knowledge on diabetes on DB number was found. For most DB the patients demonstrated the socalled compliant coping (i.e., adherence to the diet recommendations), excluding the DB “I am not allowed to eat when I am hungry”, which was associated mostly with intermediate coping styles that might unfavorably influence one's health status. The compliant diet coping scores were in a weak negative correlation with DB number and with the patient's level of knowledge on diabetes. DTSQ score weakly but significantly correlated with the total score of compliant and intermediate diet coping.Conclusion: Main DB in DM2 are related to physical discomfort, financial problems and limitations in food choices. Individual DB content depends on age, gender, educational level, social status and employment. Higher numbers of DB per patient is associated with decreased possibility of compliant diet coping style. Overloaded diet recommendations are associated with an increase in DB number that may lead to poorer patient compliance to diabetes treatment in general, as well as to poorer diabetes-dependent quality of life. Elderly patients, as well as those with lower educational level, unemployed, with uncontrolled diabetes, poor general compliance and higher levels of anxiety and depression have the highest DB numbers. Individual DB are to be considered during therapeutic patient education in DM2 and patient-tailored approach to therapy. 

Health-related quality of life in patients with moderate-severe psoriasis: Preliminary results on the role of psychopathology and coping strategies in a cohort of patients

2016 ◽  
Vol 33 (S1) ◽  
pp. S384-S384
Author(s):  
M. Fabrazzo ◽  
V. De Santis ◽  
R.V. Puca ◽  
F. Romano ◽  
M. Arrigo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Coping Strategies ◽  
Short Form ◽  
Perceived Health ◽  
Anxiety Symptoms ◽  
Perceived Health Status ◽  
Preliminary Results ◽  
And Coping

Psoriasis is a multisystem inflammatory disease associated to several comorbidities with a significant impact on interpersonal and social life. Depression, anxiety symptoms and suicidal ideation–due to psychological distress–are frequently reported. The aim of the study was to assess whether psychological factors–psychopathology, perceived health status and coping strategies–together with clinical and sociodemographic factors, were independent predictors of Quality of Life (QoL) in adult psoriatic patients on topical and/or systemic pharmacological therapy. A cohort of 87 patients (53 M and 34 F), whose mean age was 46 ± 22 years, was analyzed. Coping responses were assessed by COPE and general psychopathology by Self-Reported-Symptom Inventory Revised (SCL-90), while HAM-D and HAM-A evaluated depressive and anxiety symptoms. In addition, perceived health status and QoL were analyzed by Short-Form-36 (SF-36) while the disease's burden assessed by PSODISK. Univariate analyses were performed for each variable to explore the relationship with QoL. Preliminary results indicated that, although not severe, anxiety and depressive symptoms were the most reported among patients along with somatization and obsessive-compulsivity. Female patients used more frequently mental disengagement, focus on and venting of emotions, use of instrumental social support and religious coping. Physical pain and mental health, instead, greatly affected QoL of subjects in a negative manner. PSODISK data analysis showed that general health, itching, serenity, shame and degree of extension of the disease on the skin were the most compromised areas. Moreover, correlation analysis indicated that a worse perception of patients’ health status was associated to poor QoL.Disclosure of interestThe authors have not supplied their declaration of competing interest.

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