Дисертації з теми "Assessment of chronic illness care"
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1
Landim, Camila Aparecida Pinheiro. "Adaptação cultural para o Brasil e Portugal do instrumento Patient Assessment of Chronic Illness Care (PACIC)." Universidade de São Paulo, 2012. http://www.teses.usp.br/teses/disponiveis/22/22132/tde-17042013-144940/.
Повний текст джерелаАнотація:
O Patient Assessment of Chronic Illness Care (PACIC) é o único instrumento disponível na literatura científica para avaliação da qualidade do cuidado sobre os elementos do Modelo de Cuidados Crônicos, na perspectiva da pessoa com condição crônica. No contexto cultural do Brasil e de Portugal, não há instrumentos para avaliar essa dimensão de cuidado no diabetes mellitus (DM), considerada como uma importante condição crônica, em decorrência da sua prevalência e mortalidade mundial. Trata-se de um estudo metodológico com o objetivo de realizar a adaptação cultural para o Brasil e Portugal do instrumento PACIC. Constituído por 20 itens, o PACIC possui cinco domínios: Participação Ativa do Paciente no Tratamento, Modelo do Sistema de Cuidado/Modelo para a Prática, Estabelecimento de Metas/Adaptação, Resolução de Problemas/Contexto e Seguimento/Coordenação. O processo de adaptação cultural seguiu as etapas preconizadas pela literatura: Tradução, Comitê de Especialistas, Retrotradução (Back-Translation), Pré-Teste e Entrevista Cognitiva. O estudo foi realizado em ambulatório de endocrinologia, de uma unidade básica distrital de saúde no município de Ribeirão Preto, São Paulo, Brasil e de um hospital público e de ensino na cidade do Porto, Portugal. Os dados foram obtidos por meio da entrevista dirigida, nos meses de novembro (Brasil) e maio (Portugal) de 2012. Mediante os critérios de seleção, a população do estudo foi constituída por 50 pessoas brasileiras e 50 pessoas portuguesas, perfazendo um total de 100 pessoas com DM. Para a coleta de dados foi utilizado os instrumentos Impressão Geral e Específica do Projeto DISABKIDS ® . Para apresentação dos resultados utilizou-se análise descritiva, por meio de quadros e tabelas. Os resultados encontrados foram satisfatórios, demonstrando que o instrumento foi considerado muito bom pela maioria da população do estudo, com questões fáceis de entender e categorias de respostas não difíceis de serem utilizadas. Somado a isso, 92% (Brasil) e 86% (Portugal) dos participantes declararam que os itens do instrumento são muito relevantes para o diabetes mellitus, como condição de saúde. Visando a maneira como os 20 itens do instrumento avaliado foram formulados, a maioria mostrou-se de fácil compreensão, apenas quatro (6, 10, 12 e 16) foram adaptados culturalmente no Brasil e um (19) em Portugal. Conclui-se que o estudo resultou em um instrumento adaptado culturalmente e compreensível para o Brasil e Portugal. Há necessidade de prosseguir com a avaliação das propriedades psicométricas para o estudo de validação do instrumento adaptado em ambos os contextos culturais.The Patient Assessment of Chronic Illness Care (PACIC) is the only instrument available in the scientific literature to assess the quality of care for the elements of Chronic Care Model from the perspectives of individuals with chronic diseases. In the Brazilian cultural context, there is no instrument to evaluate this dimension in the care provided for diabetes mellitus (DM) patients, which is considered an important chronic condition due to its prevalence and mortality worldwide, nor is there one in the Portuguese cultural context. This methodological study\'s objective was to perform the cultural adaptation of the PACIC instrument for both Brazil and Portugal. It comprises 20 items and five domains: Patient Activation, Delivery System Design/Practice Design, Goal-Setting/Tailoring, Problem-Solving/Context and Follow- up/Coordination. The cultural adaptation process followed the steps recommended by the literature: Forward Translation, Expert Panel, Back-Translation, Pre-testing, and Cognitive Interviewing. The study was conducted in the endocrinology outpatient clinic of a primary health unit in the city of Ribeirão Preto, SP, Brazil and in a public university hospital in the city of Porto, Portugal. Data were obtained through focused interviews in November (Brazil) and in May (Portugal), 2012. A total of 50 Brazilian and 50 Portuguese individuals met the inclusion criteria, totaling 100 individuals with DM. The instruments General and Specific Impression of DISABKIDS ® Project were used to collect data. Descriptive analysis was used and the results are presented in tables. The results were satisfactory, showing the instrument was considered very good by most of the study\'s population. Questions were considered to be easy to understand and the answer categories were also easy to use. Additionally, 92% (Brazil) and 86% (Portugal) of the participants reported the instrument\'s items are very relevant for DM as a health condition. Due to the way the instrument\'s 20 items were developed, most were easy to understand and only four (6, 10, 12 and 16) were culturally adapted for Brazil and only one (19) was culturally adapted for Portugal. The conclusion was an instrument culturally adapted and easy to understand both in Brazil and Portugal. There is a need to assess its psychometric properties to validate the adapted instrument for both cultural contexts.
2
Culen, Caroline, Marion Herle, Marianne Konig, Kiana Johnson, David L. Wood, and Gabriele Hausler. "Be on TRAQ – Cross-cultural adaptation of the Transition Readiness Assessment Questionnaire (TRAQ 5.0) and pilot testing of the German Version (TRAQ-GV-15)." Digital Commons @ East Tennessee State University, 2019. https://dc.etsu.edu/etsu-works/7012.
Повний текст джерелаАнотація:
Objective: Transfer from pediatric care into the adult health care system is known to be a vulnerable phase in the lives of youth with special health care needs (YSHCN). Recommendations from the literature favor assessment of transition readiness rather than simply pass over YSHCN from pediatric to adult-centered care by the age of 18. Nevertheless, no validated and disease neutral assessment instrument in German exists to date. Hence, our aim was to cross-culturally adapt and to pilot-test a German version of the Transition Readiness Assessment Questionnaire (TRAQ 5.0). We wanted to provide a tool that can be applied broadly during the health care transition (HCT) process of YSHCN.
Methods: The development included translating and adapting TRAQ 5.0 to German and conducting a pilot-study with 172 YSHCN between the ages of 14 and 23.
Results: Cross-cultural adaptation resulted in the TRAQ-GV-15. Exploratory factor analysis led to a 3 factor-structure. Internal consistency for the overall score was good with a Cronbach’s alpha of 0.82. Age, in contrast to sex, had a significant effect on the TRAQ scoring. The administration of the TRAQ-GV-15 was well received and demonstrated good feasibility.
Conclusion: The TRAQ-GV-15 is an easily applicable and clinically usable instrument for assessing transition readiness in German speaking YSHCN prior to HCT.
3
Kobelt, Gisela. "Health economic assessment of medical technology in chronic progressive diseases : multiple sclerosis and rheumatoid arthritis /." Stockholm, 2003.
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4
Wintermann, Gloria-Beatrice, Jenny Rosendahl, Kerstin Weidner, Bernhard Strauß, Andreas Hinz, and Katja Petrowski. "Fatigue in chronically critically ill patients following intensive care - reliability and validity of the multidimensional fatigue inventory (MFI-20)." Saechsische Landesbibliothek- Staats- und Universitaetsbibliothek Dresden, 2018. http://nbn-resolving.de/urn:nbn:de:bsz:14-qucosa-235556.
Повний текст джерелаАнотація:
Background
Fatigue often occurs as long-term complication in chronically critically ill (CCI) patients after prolonged intensive care treatment. The Multidimensional Fatigue Inventory (MFI-20) has been established as valid instrument to measure fatigue in a wide range of medical illnesses. Regarding the measurement of fatigue in CCI patients, the psychometric properties of the MFI-20 have not been investigated so far. Thus, the present study examines reliability and validity of the MFI-20 in CCI patients.
Methods
A convenience sample of n = 195 patients with Critical Illness Polyneuropathy (CIP) or Myopathy (CIM) were recruited via personal contact within four weeks (t1) following the transfer from acute care ICU to post-acute ICU at a large rehabilitation hospital. N = 113 (median age 61.1 yrs., 72.6% men) patients were again contacted via telephone three (t2) and six (t3) months following the transfer to post-acute ICU. The MFI-20, the Euro-Quality of Life (EQ-5D-3 L) and the Structured Clinical Interview for the Diagnostic and Statistical Manual of mental disorders DSM-IV (SCID-I) were applied within this prospective cohort study.
Results
The internal consistency Cronbach’s α was adequate for the MFI-total and all but the subscale Reduced Motivation (RM) (range: .50–.91). Item-to-total correlations (range: .22–.80) indicated item redundancy for the subscale RM. Confirmatory Factor analyses (CFAs) revealed poor model fit for the original 5-factor model of the MFI-20 (t2/t3, Confirmatory Fit Index, CFI = .783/ .834; Tucker-Lewis Index, TLI = .751/ .809; Root Mean Square Error of Approximation, RMSEA = .112/ .103). Among the alternative models (1-, 2-, 3-factor models), the data best fit to a 3-factor solution summarizing the highly correlated factors General −/ Physical Fatigue/ Reduced Activity (GF/ PF/ RA) (t2/ t3, CFI = .878/ .896, TLI = .846/ .869, RMSEA = .089/ .085, 90% Confidence Interval .073–.104/ .066–.104). The MFI-total score significantly correlated with the health-related quality of life (range: −.65-(−).66) and the diagnosis of major depression (range: .27–.37).
Conclusions
In the present sample of CCI patients, a reliable and valid factor structure of the MFI-20 could not be ascertained. Especially the subscale RM should be revised. Since the factors GF, PF and RA cannot be separated from each other and the unclear factorial structure in the present sample of CCI patients, the MFI-20 is not recommended for use in this context.
5
Ho, Cornelia. "Understanding and influencing dietary self-care in chronic illness." Thesis, University of Birmingham, 2012. http://etheses.bham.ac.uk//id/eprint/3848/.
Повний текст джерелаАнотація:
Objectives Coeliac Disease (CD) is a common chronic autoimmune disorder characterised by sensitivity to gluten. This study investigated the relationships between CD illness representations, coping, self-efficacy, health related quality of life, wellbeing, psychological distress and dietary self-care (following a gluten free diet) among adults with coeliac disease. Design A questionnaire-based correlation design was used to investigate the hypothesised relationships between illness representations and outcomes. Methods Ninety six adults with CD, recruited through dietician clinics, completed a single booklet of questionnaires about their beliefs, experiences and behaviour in relation to their CD. In addition serology (CD antibody levels) and clinician rated levels of dietary self-care (both taken within one month of participation) were employed as additional measures of behaviour. Results Results of regression analyses showed that some aspects of illness representation, particularly estimates of consequences and emotional impact were related to some psychosocial outcomes but not levels of dietary self-care (which was generally high among the sample). Conclusions Illness representations may be useful in explaining some psychosocial outcome for CD, but more research would be needed to assess whether they are useful in explaining dietary behaviour among this population. Findings related to coping and self-efficacy are also discussed.
6
Kensall, Sherri Lynn. "Experiences of ethnic minorities with chronic illness accessing primary health care." Thesis, University of British Columbia, 2011. http://hdl.handle.net/2429/34185.
Повний текст джерелаАнотація:
Living with a chronic illness such as diabetes or heart disease and accessing health care over many years can be a challenge for anyone. This experience is further impacted by experiences associated with being an ethnic minority where challenges in communicating with health care providers or encountering different views on health care can make navigating the system more difficult. Within the current health care system in British Columbia, the Primary Health Care (PHC) Charter articulates a clear role for PHC as the setting in which chronic illness care is organized and delivered. Unfortunately, interactions in PHC can be both a source of support and of stress for individuals. In order to provide care which supports individuals to self manage their health, it is important that PHC providers understand common experiences and priorities for diverse populations when seeking care in the ongoing management of their condition.
Through secondary analysis, this study analyzes data from a recent research project exploring the experiences of ethnic minorities in PHC by Dr Wong. Data from twelve focus groups with a subset of participants with chronic illness was examined to further advance aspects of chronic illness management within the context of the current health care environment in British Columbia (BC). This data was viewed within a critical cultural perspective to inform both current and future practice in order to promote care which is culturally safe and at the same time supports individuals in adopting healthier lifestyles and maximizing their confidence in managing their health. Results from this study highlight the challenges encountered by anyone managing a chronic illness but also how ethnic minorities may face an increased burden of illness. This study also explores how approaches in the charter, specifically the expanded chronic care model, need to be viewed critically in terms of the potential to promote a sense of individual responsibility for care or further racialization through subcategorizing individuals based on ethnicity. This study also highlights benefits in the approaches to CDM especially in the investments in resources in multiple languages and potential for building stronger linkages to community programs.
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Martin, Sam C. "Coeliac disease : chronic illness and self-care in the digital age." Thesis, University of Warwick, 2017. http://wrap.warwick.ac.uk/103497/.
Повний текст джерелаАнотація:
This doctoral research contributes to three main fields: the Sociology of Health and Illness (SHI), specifically in the way it speaks to Coeliac Disease; and the field of Big Social Data and Health in general. Research in SHI, has typically focussed on the effects of diagnosis on self-identity, and illness narratives used in adapting to life with chronic disease. While there have been recent studies looking at how general food cultures, obesity and diabetes are visualised on social media, there have been no studies about the visualisation of self-care and identity in relation to Coeliac Disease specifically. Current social research in Coeliac Disease is mainly focused on the psychological impact of being diagnosed with Coeliac Disease and the challenge the gluten free diet can put on individuals. There is little in the literature about how individuals self-manage Coeliac Disease or share identity across social media platforms, or how they use social media to navigate risk. Current literature in the field of Big Social Data and Health, mainly looks at how social media offers opportunities to socially share or disseminate public health information between organisations and the public, as well as how the use of wearable technology and apps are used to quantify health. It does not look at how the chronically ill share symptoms, identity and self-care across social media platforms. This thesis adds to the literature by bringing together the fields of SHI, Big Social Data and Health, and Social Science research into Coeliac Disease to understand and visualise the way Coeliac patients actively use social media platforms in the process of self-care and self-identity. It explores how social media can be used to tell a chronic illness narrative, and thus illustrate the process of diagnosis, and how individuals adapt to life as a Coeliac on the gluten free diet (GFD). In doing so, this research provides an illustrative example of how social media data can be used to both inform and complement research on Coeliac Disease specifically, and the fields of SHI and digital social science more generally.
8
Selfe, Susan Anne. "Chronic pelvic pain in women : illness, disease and medical attitudes." Thesis, University of Southampton, 1998. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.262875.
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Sibayan, Juanita. "Family Relational Experiences During Major Transitions with a Chronic Illness." ScholarWorks, 2018. https://scholarworks.waldenu.edu/dissertations/5266.
Повний текст джерелаАнотація:
Although health care transitions have received some attention in the literature, few researchers have emphasized family relational experiences and communication during major changes while living with a chronic illness. The purpose of this phenomenological study was to understand the lived experience of parents and their adult children while transitioning from pediatric to adult care of a chronic illness. The bio-psychosocial theory, family systems theory, and attachment theory established the context for this study. A criterion-based sampling technique and snowball sampling were used to recruit 7 parents and 6 of their adult children aged 18 to 30 years who were diagnosed with cystic fibrosis or congenital heart disease, and who had either completed or were in the process of completing the transition from pediatric to adult healthcare. Semi-structured interviews were conducted, and content analysis was used to code and analyze themes that emerged from the experiences of participants. The themes that were identified included that parents were instrumental in maintenance of treatments during high risk periods of adolescence, healthy parent and child relations included collaboration that accommodated autonomy, and that early coaching helped reduce parental anxiety about non-adherence while increasing the self-efficacy of the child. This study contributes to positive social change by informing the design of current procedures to transition young adults with chronic illness by recommending flexibility in negotiations, early education, shadowing between facilities, and incorporating evidence-based practice based on feedback from each family member.
10
Powell, Deborah Lynn. "An exploration of space, time and chronic illness : multiple perspectives on stroke." Thesis, Lancaster University, 1999. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.368049.
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11
Ravenscroft, Eleanor Fay. "Patient perspectives on health care system navigation : the chronic illness multi-morbidity experience." Thesis, University of British Columbia, 2008. http://hdl.handle.net/2429/642.
Повний текст джерелаАнотація:
Meeting the health care needs of people with chronic conditions presents one of the greatest challenges for 21st century health care system renewal. Appropriate redesign of health care delivery with this complex patient population in mind requires information from many sources. Although much is known about the patient experience of chronic illness much less is understood about how patients navigate their health care delivery context.
The purpose of this qualitative study was to examine the point of view of patients dealing with multi-morbidity. These people have a unique understanding of how health care delivery links across time, place, and settings because of the care they require for their multiple chronic conditions.
An interpretive descriptive design was used to examine patient navigation from the perspective of 20 adult patients with chronic kidney disease, and co-existing diagnoses of diabetes mellitus and/or cardiovascular disease. The findings generated from iterative, constant comparative analysis add important patient perspectives about health care system navigation. From the consumer perspective health care navigation is challenging, requiring (a) ongoing discovery about the complex social structures that make up the health care system, and (b) learning how to strategically use this knowledge to manage the health care system. The findings highlight the disjunctures and misalignments in the health care delivery system, the cumulative health care-related burden of multiple chronic conditions for consumers, and consumer concerns about subtle inequities in the health care system.
As health care renewal efforts gain momentum new knowledge from the perspective of consumers, such as that captured in this research, is important. The consumer perspective provides a valuable opportunity for stakeholders in health care policy- and decision-making to contextualize and make greater sense of the information used in making decisions about health care service delivery for vulnerable populations, like patients with multiple chronic conditions.
12
McPherson, Gladys Irene. "Children's participation in chronic illness decision-making: an interpretive description." Thesis, University of British Columbia, 2007. http://hdl.handle.net/2429/579.
Повний текст джерелаАнотація:
Participation in decision-making and inclusion in the important matters of one’s life are upheld as measures of equality and indicators of the moral status of individuals in liberal democratic societies. To some extent, the status of children in western societies is a contested question, and hence, the nature of children’s contributions to decisions is a matter of debate. Evidence suggests that in spite of an apparent societal commitment to children’s participation in the important matters of their lives, children tend to be excluded from decisions in which they might reasonably be involved. This project investigated the participation of one group of children—chronically ill school-age children— in decisions related to their health care. Adopting interpretive description as methodology, data were collected and analyzed through interviews and participant observation with 31 chronically ill children (ages 7 to 12 years) and their parents, as well as through interviews with health care providers.
In this study, children’s participation in health care decisions emerged as a complex activity, deeply embedded in relationship and history. Participation varied within two key domains: children’s opportunities and abilities to formulate and make known their intentions and desires in decisional contexts (the resonance of children’s voices); and the standing achieved by children’s views within decisional processes (the relevance of children’s voices). The interplay of adult authority and children’s agency at the nexus of the resonance and relevance of children’s voices created certain participatory spaces, depicted as moral and social realms variously characterized by children’s silence, children’s tangible expression, adult imposed authority, or adult assumed responsibility.
The findings of this study demonstrate a need to re-think our concept of children’s participation, and point to the importance of developing a more relational and contextual understanding of how chronically ill children may contribute to important matters in their lives. The findings also support a view that nurses and other health care providers hold certain responsibilities to critically question the relationships and structures that comprise children’s health care encounters, toward a goal of creating conditions where possibilities for children’s participation are optimized.
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Lee, Debra A. "The Role of Relationships During Chronic Critical Illness." Case Western Reserve University School of Graduate Studies / OhioLINK, 2011. http://rave.ohiolink.edu/etdc/view?acc_num=case1307657748.
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14
Montoya, Vicki. "Improving Chronic Kidney Disease Care with Group Visits." Doctoral diss., University of Central Florida, 2013. http://digital.library.ucf.edu/cdm/ref/collection/ETD/id/5676.
Повний текст джерелаАнотація:
First year death rates remain unacceptable high for the end-stage renal disease (ESRD) population. New effective methods are vital to improve first year morbidity and mortality outcomes for the population transitioning from Stage 4 chronic kidney disease (CKD) to ESRD)/Stage 5 CKD. Based on current methods, evidence-based recommendations made by nephrology providers are frequently not heeded by patients in Stage 4 CKD. Low levels of patient knowledge, self-efficacy, and a poor ability to self-manage CKD negatively influence a patient's ability to follow provider recommendations. The group visit (GV) intervention has demonstrated improvements in disease-related outcomes through increased levels of patient knowledge, self-efficacy, and disease self-management for other chronic diseasses such as diabetes and congestive heart failure (CHF). No data are available for the use of GVs in CKD. The purpose of the study was to develop and test a nurse practitioner-facilitated chronic CKD GV model versus usual nephrology care for Stage 4 CKD patients (knowledge, self-efficacy/self-management, physiological data, and satisfaction). As classified by the National Kidney Foundation's (NKF) staging system, Stage 4 CKD is considered severe kidney disease, with a decrease in the functional capacity of the kidney as determined by a glomerular filtration rate (GFR) of 15-30 ml/min. It is common for patients with Stage 4 CKD to progress to Stage 5 CKD/end-stage renal disease (ESRD), requiring dialysis or transplantation to survive. Preliminary instrumentation and feasibility studies were conducted prior to a pilot study of a CKD GV model. The development and validation of the Stage 4 CKD Knowledge Instrument was completed with 59 Stage 4 patients. Findings supported reliability (Kuder-Richardson-20 [KR] = .89) and content validity (I-CVI = .97, S-CVI= 1.0) Feasibility of the CKD GV model was assessed with a single group, pretest-posttest design using a convenience sample of eight Stage 4 patients. Results demonstrated an improvement in knowledge of CKD from a median of 69% to 86% (p =.012). No improvements were noted in self-efficacy scores (p = .230). GV satisfaction ranged from very good to excellent. Feasibility was supported by a high retention rate (100%). No barriers to participant recruitment or GV implementation were encountered. The pilot study used a two-group, repeated measures experimental design, with a sample of 30 Stage 4 CKD patients from two office locations of an outpatient nephrology practice. Patients were randomized to the GV intervention or to usual nephrology care. CKD-knowledge, self-efficacy, and self-management scores were collected at baseline, six months, and nine months. Physiological data were measured at baseline, six months, and nine months. GV satisfaction was obtained after the completion of GVs (six months). Nephrology practice satisfaction was obtained from by both groups at nine months. MANOVA for repeated measures was calculated for data collected at the three time points. Twenty-six of 30 patients completed the study, with four patients ineligible to complete the study due to progression to ESRD and dialysis initiation. GV attendance was 92%. CKD knowledge was statistically improved for both groups (F(1.498, 34.446) = 6.363, P = .008). While not statistically significant, a favorable upward trend in the mean scores for the subscales of self-management (communication, partnership in care, and self-care) was demonstrated in the GV patients, with a lack of improvement found in the usual care group for these subscales. Self-efficacy scores revealed a non-significant improvement in mean scores for the GV patients during the GVs, not seen with usual care patients. GV satisfaction was again high with the vast majority of patients requesting use of GVs in their future nephrology care. Current methods of intervention in the Stage 4 CKD population have made little impact on reducing first-year ESRD mortality and morbidity rates. Opportunities to intervene in the poor outcomes begin in the predialysis care of Stage 4 patients. Based on the documented success of multidisciplinary approaches in predialysis care, of GVs in other chronic diseases, and of chronic illness care based on the CCM, a high probability for success exists with the application of GVs in CKD. Although limited by a small sample size, promising improvements in the subscales of disease self-management, self-efficacy, CKD knowledge, and high satisfaction with the GV model for GV participants were revealed in this study. Further research is warranted for the CKD GV model on a larger randomized sample in other locations. Much needed data would be provided on which to base decisions for use of the CKD GV intervention in the predialysis care of Stage 4 patients.Ph.D.
Doctorate
Nursing
Nursing
Nursing
15
Kueny, Angela M. "Amish family care for children with chronic illnesses: an ethnography." Diss., University of Iowa, 2011. https://ir.uiowa.edu/etd/3326.
Повний текст джерелаАнотація:
The purpose of this study was to understand the cultural context in which Amish families manage the care of a child with a chronic illness and how it frames the interface with the larger health care delivery system outside their communities. The aims of this study were to describe Amish families' understanding of their children's chronic illnesses, and to describe Amish families' health management and health seeking behaviors for their children within the Amish community and with health services outside their community.
Ethnographic research methods were used to paint a cultural portrait of individuals and families, using data sources such as formal and informal interviews with participants, participant observations in the Amish community and family homes, Amish newspapers, and direct observations in health care clinic settings. Informants in this study included Amish families, Amish community members, and health care providers to illustrate commonalities and differences in perspectives on the chronic illness management for children. The study made use of ethnographic analysis, guided by thematic and cultural narrative techniques, to describe Amish family management for children with chronic illnesses in a way that pulls forward how their cultural background is involved in their behaviors and experiences.
The results of this study highlight several points: a) the Amish community influences how families understand and appraise concern for their children's illnesses, and families prioritize children's function as a measure of health/illness and see children as ultimately in the hands of God; b) minimal entanglement with the health care community allows for children to be as normalized as possible into the everyday life of the Amish community; c) families prefer to use home remedies to lower costs, potentially prevent the need for health services, and alleviate their child's symptoms in their own homes and community; d) when seeking health services, families prefer treatments they can manage in their homes, health care providers who are knowledgeable about the use of Amish home remedies for their children, and the ability to make health decisions in consideration of the impact to the greater Amish community.
To provide culturally competent care for Amish children, this study describes provider competencies needed to understand and accommodate the child's family cultural orientation, values, beliefs, and health care practices into cooperative care planning. One of the most significant attributes for providers to understand when working with Amish families is their collectivist perspective. As collectivists, these families may place the ultimate Amish community goals of believing in God, separation from society, and traditional lifestyle choices over their own when caring for children with chronic illnesses. This is a difficult competency for health care providers who function within a larger medical legal system that requires the placement of individuals above other considerations. It is at the intersection of these two cultures that this study is situated.
16
Johnson, Juli A. "A Retrospective Look at How Effectively Parents, Peers Without a Chronic Illness, and Other Adolescents With a Chronic Illness Impact the Self-Esteem and Body Image of Adolescents With a Chronic Illness." Ohio University / OhioLINK, 2016. http://rave.ohiolink.edu/etdc/view?acc_num=ohiou1472747981.
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Porter, Judi A. "The nutritional status and food skills of people with a chronic mental illness." Thesis, Queensland University of Technology, 1998. https://eprints.qut.edu.au/36742/1/36742_Digitised%20Thesis.pdf.
Повний текст джерелаАнотація:
The nutritional needs of people with a chronic mental illness have not been adequately defined. The present study attempted to evaluate the nutritional status and food skills of people with a chronic mental illness residing in congregate care and the community. Specific objectives included investigating whether standard anthropometric measurements could be used with people with a chronic mental illness, gathering nutrient intake and food skills data using appropriate assessment methods, estimating the prevalence of some nutrition related diseases, and conducting nutrition intervention programs to rectify nutrition and/or food skills deficits. Comparisons were also made between the anthropometric status and dietary intake of the study group and the general Australian population.
The study consisted of an assessment phase and an intervention phase. The assessment phase evaluated the nutritional status and food skills of a random sample of people with a chronic mental illness in congregate care. A sample of community living people with a chronic mental illness were matched by diagnosis and gender to the congregate care group. The intervention phase consisted of three nutrition programs which involved a sub-sample of the congregate care population.
Assessment of the nutritional status of people with a chronic mental illness was undertaken using standard anthropometric techniques. The weight and height of people with a chronic mental illness was not significantly different to the general Australian population. More than fifty percent of study participants were overweight or obese. Males with a chronic mental illness had lower levels of muscle mass than was expected. An exercise program incorporating principles of health promotion was developed in an attempt to improve the muscle mass of males and decrease the prevalence of overweight and obesity. This program was unable to be fully implemented due to barriers at the study site, including organisational communication problems, lack of consumer motivation, and the focus of mental health workers on mental health rather than physical health issues.
Dietary intake measurements were made using a multifaceted approach to increase reliability of the data obtained. Diet histories were used to estimate the nutrient intake of each participant. Weighed food intakes and the menu were also used to obtained dietary intake data for participants in congregate care. The average energy intake of males in the study group was 11 OOOkJ and of females was 9300kJ. Males with a chronic mental illness in congregate care consumed significantly more beta-carotene, sodium and percentage energy from fat, and less alcohol than males with a chronic mental illness residing in the community. Females residing in congregate care consumed significantly more energy, carbohydrate, fat, beta-carotene and sodium than females with a chronic mental illness residing in the community. Zinc and calcium were the limiting nutrients for males and females, although the probability of requirements not being fulfilled was small.
A menu intervention to decrease intake of energy, percentage energy from fat and saturated fat was implemented. Menu modification successfully demonstrated that an improved nutrient profile could be achieved, however simultaneous undesired changes in macronutrient and micronutrient profile also occurred. These unanticipated changes included a significant decrease in the consumption of dietary fibre, beta-carotene, riboflavin, niacin, iron and zinc.
The food skills of people with a chronic mental illness living in congregate care were significantly poorer than people residing in the community. Clear food skills deficits were identified by the Functional Needs Assessment - Nutritional Management Program (Dombrowski, 1990). There were no significant differences for food skills when gender comparisons were made. Comparisons by diagnosis revealed people with organic brain disorder had the lowest food skills. A food skills program was conducted using an individualised approach. This program demonstrated that food skills of people with a chronic mental illness could be improved providing they were motivated to participate.
The lack of food and nutrition policy for people with a mental illness was highlighted. It is recommended that such a policy be developed and implemented as a priority. A food and nutrition policy for this group could incorporate the Dietary Guidelines for Australians because direct evidence was obtained during this study to support their use in this group.
The lack of previous nutrition resources provided for people with a mental illness have manifested in the nutrition problems identified in this study. Multipronged and strategic approaches are required to resolve many of the nutrition problems of people with a chronic mental illness. To implement these approaches, it is recommended that nutrition services for people with a mental illness in the future should be provided both by nutrition specialists working in mainstream health services, and by nutrition specialists with knowledge and skills specific to mental health.
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Ray, Maureen Georgina. "Continuity and change : sustaining long-term marriage relationships in the context of emerging chronic illness and disability." Thesis, Keele University, 2000. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.325863.
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Guccione, Sharon. "Chronic Care Management Services at a Clinical Medical Group." ScholarWorks, 2018. https://scholarworks.waldenu.edu/dissertations/7655.
Повний текст джерелаАнотація:
The purpose of this project was to design a chronic care plan using the chronic care management (CCM) framework to improve health services at lower healthcare costs. The practice-focused question explored whether the operationalization of the CCM model would impact progress toward the management of chronic illness for the target population of Medicare beneficiaries with 2 or more chronic illnesses in an urban acute care agency located in the western United States. The middle-range theory, logic rational plan model, Lewin’s change theory, and the CCM’s coordination care and collaborative care concepts were used to guide the project. Data were collected from nursing databases and government agencies. Nurses were significant to the CCM reform by supporting the elements for proactive care. Nurse practitioners can bill using the CCM codes, and clinical nurses can performed patient sensitive care. The social changes were patients with chronic illnesses realized a better quality of life at lower health costs.
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Audulv, Åsa. "The over time development of chronic illness self-management patterns: a longitudinal qualitative study." Mittuniversitetet, Avdelningen för hälsovetenskap, 2013. http://urn.kb.se/resolve?urn=urn:nbn:se:miun:diva-18919.
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Background: There currently exists a vast amount of literature concerning chronic illness self-management, however the developmental patterns and sustainability of self-management over time remain largely unknown. This paper aims to describe the patterns by which different chronic illness self-management behaviors develop and are maintained over time. Method: Twenty-one individuals newly diagnosed with chronic illnesses (e.g., diabetes, rheumatism, ischemic heart disease, multiple sclerosis, chronic renal disease, inflammatory bowel disease) were repeatedly interviewed over two-and-a-half years. The interviews were conducted in Sweden from 2006 to 2008. A total of 81 narrative interviews were analyzed with an interpretive description approach. Results: The participants’ self-management behaviors could be described in four different developmental patterns: consistent, episodic, on demand, and transitional. The developmental patterns were related to specific self-management behaviors. Most participants took long-term medications in a consistent pattern, whereas exercise was often performed according to an episodic pattern. Participants managed health crises (e.g., angina, pain episodes) according to an on demand pattern and everyday changes due to illness (e.g., adaptation of work and household activities) according to a transitional pattern. All of the participants used more than one self-management pattern. Conclusion: The findings show that self-management does not develop as one uniform pattern. Instead different self-management behaviors are enacted in different patterns. Therefore, it is likely that self-management activities require support strategies tailored to each behavior’s developmental pattern.Exploring individuals’ conceptions as a way to understand self-management among people living with long term medical conditions
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Wong, Pak-shun, and 黃伯順. "Suicide risk assessment in community dwelling people with severe mental illness." Thesis, The University of Hong Kong (Pokfulam, Hong Kong), 2011. http://hub.hku.hk/bib/B46583361.
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Krespi, Margorit Rita. "Patients' perceptions of their chronic physical illness, its treatment and its effects : towards patient-derived interventions." Thesis, University of Liverpool, 2001. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.369538.
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Milne, Heather. "Linking professional organisations of health care to patients' perceptions and experiences of chronic illness : a discussion of health services for type 2 diabetes in Scottish primary care." Thesis, University of Edinburgh, 2011. http://hdl.handle.net/1842/5885.
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UK Health policy over the past decade has sought to accelerate established trends of moving services for type 2 diabetes into primary care. This has aimed to make services more accessible and to enable patients to benefit from having their diabetes care incorporated into the “generic and holistic” approach of primary care. However, in 2004 the introduction of a new General Medical Services (nGMS) contract signalled a change in primary care by linking clinical targets to financial rewards on a larger scale than ever before. Diabetes is one of nineteen financially incentivised clinical areas under the nGMS contract (2006). This thesis considers how these health policies may have influenced the organisation and experience of providing and receiving care for type 2 diabetes in Scottish primary care settings. It also aims to bridge two usually separate areas of sociological interest: how health professionals interpret and implement policy, and how patients experience and perceive chronic illness and their health care. A multiple case study approach was employed in order to compare and explore the organisation and experience of type 2 diabetes care associated with three general practices of differing size and location. In each case study a period of non participant observation was undertaken and in-depth interviews conducted with health professionals and their type 2 diabetes patients. Analysis of these data shows that multiple factors influence the way diabetes care is organised and experienced in primary care. I argue that the local context of interpersonal relationships of trust, professional identities and role expectations influence both the organisation of care and the way patients interpret that organisation. Moreover, the meanings patients attribute to the local organisation of diabetes care can inform their perceptions of their condition and influence their desire to be involved in diabetes management.
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Gordon, Adam L. "Does Comprehensive Geriatric Assessment (CGA) have a role in UK care homes?" Thesis, University of Nottingham, 2012. http://eprints.nottingham.ac.uk/12619/.
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UK care home residents are frail, dependent and multimorbid. General practitioners (GPs) provide their healthcare but there is evidence that existing provision fails to meet their needs. Comprehensive Geriatric Assessment (CGA) comprises comprehensive multidisciplinary assessment, goal setting and frequent review. This thesis considers a possible role for CGA in UK care homes through three research projects. The Care Home Literature Review (CHoLiR) was a systematic mapping review of randomized controlled trials (RCTs) in care homes. It found no evidence supporting CGA as a whole but described some CGA components supported by RCTs: advanced care planning; interventions to reduce prescribing; staff education around dementia and end-of-life; calcium/vitamin D and alendronate in preventing fractures and osteoporosis; vaccination/neuraminidase inhibitors in preventing influenza; functional incidental and bladder training for incontinence; and risperidone/olanzapine for agitation. The Care Home Outcome Study (CHOS) was a longitudinal cohort study recording dependency, cognition, behaviour, diagnoses, prescribing, nutrition and healthcare resource use in 227 residents across 11 care homes over six months. It reported high levels of dependency, cognitive impairment, malnutrition, multimorbidity and frequent behavioural disturbance. Polypharmacy and prescribing errors were common. Variability between homes and individuals was significant for most baseline and outcome measures. Staff Interviews in Care Homes (STICH) was a qualitative interview study of 32 staff working with care homes including: GPs; care home managers and nurses; NHS community nurses and specialist practitioners. It described care defined by discontinuity and lack-of-anticipation; driven by communication failure, inadequate training and expertise in frail older patients, and arbitrary boundaries between care homes and the NHS which interfered with care. Using the findings of these studies, the author proposes a model of care which is multidisciplinary, guided by comprehensive assessment, reinforced by frequent review and delivered by experts in the care of frail older patients: CGA has a role in UK care homes.
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Keith, Lorraine Nicole. "Relationships among family as a social support system, exercise of self-care agency, and health status in the adult with a chronic illness." Virtual Press, 1993. http://liblink.bsu.edu/uhtbin/catkey/865961.
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Inadequate, expensive health care services for the chronically ill, confront the lay person as one of the major forces in the social movement toward self-care. The purpose of this predictive correlational study was to investigate within a theoretical framework derived from Orem's conceptual model of nursing relationships among family as a social support system, exercise of self-care agency, and health status for the person with a chronic illness. The sample group was 51 chronically ill adults diagnosed with diabetes mellitus who attended diabetic instructions from one of the Central Indiana Hospitals. Findings indicated a weak positive correlation between self-care and cohesion and weak negative correlation between health status and cohesion. Findings also revealed significant differences between male and female for the variables self-care and conflict.Conclusions were that this study supported certain relationships proposed by Orem's conceptual model in nursing. Results can guide diabetics in providing optimal daily self-care. Professionals in the health care arena can utilize the results for educational development and encouragement of self-care agency in the adult diabetic. The family members can also clarify roles in supporting the diabetic adult.School of Nursing
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Cligrow, Carrie M. "Pediatric Chronic Illness: How East Indian Children and Their Mothers Negotiate Culture and Hospitalization." Ohio University / OhioLINK, 2010. http://rave.ohiolink.edu/etdc/view?acc_num=ohiou1269884573.
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Monnin, Kara Suzanne Monnin. "Receipt of Behavioral Health Care in Children with Chronic Illness: Relationship among Type of Psychosocial Problem, Communication, and Disease." Kent State University / OhioLINK, 2016. http://rave.ohiolink.edu/etdc/view?acc_num=kent1461247635.
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Moore, Lucy Elizabeth. "Chronic illness and self-management in primary care : characterising the 'work' of older patients with coronary heart disease." Thesis, Exeter and Plymouth Peninsula Medical School, 2012. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.559268.
Повний текст джерелаАнотація:
Self-management policy has presented opportunities for patients with long-term conditions to improve their health and wellbeing by becoming active agents in their care. However, the 'work' of self-management for patients appears to need certain essential and desirable skills and attributes for improved health outcomes. A literature review and mind mapping analysis of policy literature produced a 'policy' model identifying 4 concepts described as active, competent, efficacious and responsible. The aim of this research was to characterise the self-management 'work' of older patients with coronary heart disease (CHD) in primary care and to identify the skills and attributes requi red for participation. This study was qualitative in design employing longitudinal diary-interviews with 21 patients, and interviews with 8 professionals, in th ree contrasting socio-economic general practice areas in the South West of England. The analysis for this study drew on concepts of governmentality and the reflexive self. It produced an alternative 'occupational' model of self- management with 5 dominant occupational roles and 3 levels of occupational status. This occupational model identified the breadth and depth of self- management practices by older patients with CHD. It incorporated the diversity of self-management strategies seen in relation to the everyday management of health problems, life and illness perspectives and challenges associated with bereavement, retirement and parallel responsibilities as carers and sufferers of co-morbidities. It clearly demonstrated where patients have the .interest, knowledge and confidence to modify their behaviour for an improved health outcome. It also highlighted the struggles associated with social, physical and emotional circumstances as well as the spectrum of relationships with health care professionals and significant others that improved or impacted upon optimum self-management. This occupational model provides a sociologically sensitive method of describing the older person's experience of living with CHD. This thesis outlines recommendations for primary care professionals based on this occupational model.
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Johnson, Alistair E. W. "Mortality prediction and acuity assessment in critical care." Thesis, University of Oxford, 2014. https://ora.ox.ac.uk/objects/uuid:2486465e-8fda-47a9-b82e-c0a93f4f1fc4.
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Accurate mortality prediction in intensive care units (ICUs) allows for the risk adjustment of study populations, aids in patient care and provides a method for benchmarking overall hospital and ICU performance. ICU risk-adjustment models are primarily comprised of an integer severity of illness score which increases with increasing patient risk of mortality. First published in the 1980s, the improvements to these scores primarily consisted of increasing the dimensionality of the model, and hence also increasing their complexity. This thesis aims to improve upon these models. First, the field is surveyed and the major models for risk-adjusting critically ill patient cohorts are identified including the acute physiology score (APS) and the simplified acute physiology score (SAPS). A key component of model performance is data preprocessing. The effect of preprocessing ICU data is quantified on a dataset of 8,000 ICU patients, and it is shown that after preprocessing to remove extreme values a logistic regression (LR) model performed competitively (AUROC of 0.8633) with the more complex machine learning model; a support vector machine (SVM) which had an AUROC of 0.8653. For validation, model development was repeated in a larger database containing over 80,000 patients admitted to 89 ICUs in the United States. Results were similar (AUROC of 0.8895 for the LR vs 0.8917 for the SVM) but showed the performance gain when using automated outlier rejection is less pronounced in well quality controlled datasets (0.8883 for LR without rejection). It is hypothesised from this that simpler models can perform competitively with more complicated models, while having a greatly reduced burden of data collection. A severity score is developed on the large multi-center database using a Genetic Algorithm and Particle Swarm Optimisation. The severity score, named the Oxford Acute Severity of Illness Score (OASIS), is shown to outperform the APS III (AUROC 0.837 vs 0.822) and perform competitively with APACHE IV when used as a covariate in a regression model (AUROC 0.868 vs 0.881). The severity score requires only 10 variables (58% as many as APS III), reducing the burden of quality control and data collection. These variables are routinely collected in critical care by continuous monitors and do not include comorbidities, diagnosis or laboratory measurements. The severity score is then externally evaluated in an American hospital and shown to discriminate well (AUROC 0.790 vs. 0.782 for the APS III) with excellent calibration. Finally, the severity score was evaluated in an English hospital and compared to other severity scores. OASIS again had excellent calibration and discrimination (AUROC 0.776 vs 0.750 for APS III) whilst requiring a much smaller number of variables. OASIS has many applications, including both simplifying data collection for studies and improving the risk assessment therein.
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Murphy, Mary Denise. "Living with asthma in Australia : an anthropological perspective on life with a chronic illness." University of Western Australia. School of Anatomy and Human Biology, 2005. http://theses.library.uwa.edu.au/adt-WU2005.0070.
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[Truncated abstract] In Australia, asthma is a common chronic illness, which often requires complex treatment regimens. This study used an anthropological perspective to explore the experience of people living with asthma, with the specific aim of contributing to the health care programs offered to people living with asthma. The study was conducted in an Australian city (Perth, Western Australia). The foci of the study were Australian lay people, from the general community, living with asthma, and a small number of non- English speaking Vietnamese-Australian migrants. Some spouses of the Australians and biomedical practitioners were also included. Questionnaires, and particularly indepth interviews, were used to explore the explanatory models of asthma for doctors and lay people with the condition. The explanatory models of the doctors focused primarily on assessing and treating the physiological dimension of asthma, and educating patients. The explanatory models for lay people with asthma reflected their everyday reality: in addition to its impact on their physical health, asthma affected their daily life, social roles and participation, and their personal identity. Placing the experience of asthma in this wider perspective showed that the Australians used practical reasoning to make a trade-off between using medication, such that they felt safe from `attacks? and could `do all they wanted to do?, and minimising their `dependence? on potentially harmful medications. Responding to acute episodes involved a risk assessment in which people weighing the health risk of waiting against the social risk of seeking help unnecessarily. For the Vietnamese- Australians, caring for asthma was strongly shaped by their social position as non- English speaking migrants. They lacked access to information about asthma and to specialist care. They had sufficient medication, but were ill-informed about how to use their medicines effectively and safely: in general, the Vietnamese people were overmedicated but under-serviced in the care of their asthma. Beyond explanatory models, the Australian participants (lay people and doctors) shared a cultural model of asthma as a chronic illness. This Australian cultural model shaped the experience and care of asthma. It included concepts such as framing the past as an adjustment process, and the present as `living normally? with asthma. Taking care of asthma was expressed as `taking control? of asthma, so a person could minimise the illness and still be healthy. The Vietnamese-Australians did not share this cultural model of asthma as a chronic illness, as reflected in their expression of the hardship asthma created in limiting their ability to work hard for their family, and how they expected a cure for their condition from biomedicine. The Australians also shared a cultural model of health that was derived, in part, from the health promotion messages that are targeted at lay people. These promotional messages were the basis of a morality in health: people shared an implicit understanding that a person deserved health, and assistance when ill, when he/she displayed the required self-discipline in performing health behaviours.
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Campbell, Lara Lynn. "Marital satisfaction in couples with chronic illness in later adulthood: The case of diabetes." CSUSB ScholarWorks, 1998. https://scholarworks.lib.csusb.edu/etd-project/1823.
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Natale, Ginny L. "Experiencing Invisible Chronic Illnesses at Work and in the Clinic: It's almost like people have to physically see it." Kent State University / OhioLINK, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=kent1561128245171026.
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Oduah, Chukwudi. "Chronic Low Back Pain- A Needs Assessment for Practice Change." ScholarWorks, 2018. https://scholarworks.waldenu.edu/dissertations/4666.
Повний текст джерелаАнотація:
There is a practice gap in the self-management education of patients with chronic low back pain. Insufficient self-management leads to increased frequency of flare-ups of low back pain, disability, loss of productivity, and increased cost of health care. The guiding practice-focused question was focused on the unmet self-management support needs of the chronic low back pain patients in a Midwestern state local pain clinic. The purpose of this descriptive cross-sectional study was to ascertain the unmet needs of patients' self-management support by analyzing the results of a patient study performed by this clinic. The theoretical principles of the model for evidence-based practice change, the chronic care model, and the middle-range theory of self-care of chronic illness were used. The evidence included the analysis of the Patient Assessment of Chronic Illness Care Survey (PACIC) data from 100 patients treated in this pain clinic. The clinic used the PACIC questionnaire to collect data from its 100 chronic low back pain patients, selected by simple random sampling method. The average weighted scores of these patients' responses were below the norm on all PACIC subscales and summary scores. According to study results, this pain clinic did not meet the self-management support needs of its chronic low back pain patients. Evidence-based recommendations were made for the improvement in the medical model of patient care by including nurse-led patient education and support. The positive social change is the improvement in the health status of this growing health population by meeting their identified education and support needs. Positive results from this nurse-led intervention could lead to the dissemination and widespread implementation of these recommendations in other pain clinics.
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Dueñas-Espín, Iván 1979. "Scale up of Integrated Care for Chronic Patients." Doctoral thesis, Universitat Pompeu Fabra, 2016. http://hdl.handle.net/10803/482054.
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The current PhD thesis consists in a compilation of three papers aimed to analyze core drivers of Integrated care (IC) scale-up, namely: (i) assess the effects of anxiety and depression on physical activity in COPD patients as a use case of chronic patients; (ii) analyze health risk assessment strategies in the 5 regions participating in Advancing Coordinated Care and TeleHealth (ACT): Scotland (UK), Basque Country (ES), Catalonia (ES), Lombardy (I) and Groningen (NL); and, (iii) identify core characteristics of any given integrated care service and to generate a proposal for assessment of service outcomes using two use cases: complex chronic patients and patients requiring long-term oxygen therapy, in order to facilitate long-term follow-up of deployment at any given site and enhance comparability among deployment sites.La presente tesis doctoral consiste en una recopilación de tres artículos destinados a analizar los conductores centrales de la ampliación a gran escala de la Atención Integrada (AC), estos son: (i) evaluar los efectos de la ansiedad y la depresión sobre los niveles de actividad física en pacientes con EPOC como un caso de uso de pacientes crónicos; (ii) analizar las estrategias de evaluación de riesgos de salud en las 5 regiones que participan en el programa Coordinated Care and TeleHealth (ACT): Escocia (UK), País Vasco (ES), Cataluña (ES), Lombardía (I) y Groningen (H); y, (iii) identificar las características básicas de cualquier servicio de AI dado, para generar una propuesta de evaluación de los resultados del servicio utilizando dos casos de uso: los pacientes crónicos complejos y los pacientes que requieren terapia de oxígeno a largo plazo; esto con el fin de facilitar el seguimiento a largo plazo de despliegue en cualquier sitio dado y así mejorar la comparabilidad entre los lugares de despliegue.
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Carr, Susan M. D. "Enabling self-identity revisioning through portraiture, for people living with life threatening and chronic illnesses : paint me this way!" Thesis, Loughborough University, 2015. https://dspace.lboro.ac.uk/2134/19522.
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Arguably life threatening and chronic illness is not just an attack on the body, it is an attack on a person s sense of self-identity, shattering the means by which a person experiences the world, and by which they also are experienced, contributing to a person s sense of powerlessness and distress. People living with a life threatening or chronic illness, often describe the impact of their diagnosis, treatment and illness as having changed their sense of self-identity beyond all recognition. Seven participants, purposefully selected from those attending a weekly day-hospice session in Wiltshire, took part in the study. This qualitative, practice-based research project challenges the power dynamics in art therapy and attempts to equalise the relationship between researcher and participant through the development of a collaborative intersubjective relationship, within which the participants are recognised as experts on their lived experience, and in a series of negotiations , co-design their own portraits directing how they wish to be portrayed. Through this process the participants become patient/researchers (PRs) and the artist/therapist/researcher (ATR), by creating the portraits, also becomes a reflexive participant . This project utilises an in-depth multiple case-study design and multiple creative data generation methods as well as a phenomenological approach to data analysis. This project reverses the terms of engagement within art therapy and uses the art therapist s artistic practice or third hand to create portraits for patients. (This is based upon the assumption that most art therapy theories terms of engagement include patients producing art within the therapeutic encounter, however some psychodynamic and psychoanalytic art therapists may use client art generation selectively or not at all). This raises important questions around who makes the artwork in art therapy interventions . The use of portraiture as a third hand intervention enables the art therapist to develop a sense of positive focussed attention and mirroring and attunement through the art object, enabling the addition of coherence through aesthetic resonance and the holding of dualities through metaphor and symbolism. The results of this study demonstrate the power of portraiture as an intersubjective way of knowing, being and relating, enabling the revisioning of identities disrupted by illness, characterised by increases in participants creative capacity to adapt to illness and feelings of home-like-being-in-the-world, developing a stronger, more coherent lived experience of self-identity, effecting closure to difficult life experiences, and improving their overall quality of life.
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McCann, John J. "Living with chronic illness, subjective contributions toward a patient-centered ethic of care with Crohn's Disease as the focus." Thesis, National Library of Canada = Bibliothèque nationale du Canada, 1999. http://www.collectionscanada.ca/obj/s4/f2/dsk1/tape9/PQDD_0012/MQ52606.pdf.
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Morris, Rebecca. "Evolving 'self'-management : a qualitative study of the role of social networks for chronic illness management in primary care." Thesis, University of Manchester, 2011. https://www.research.manchester.ac.uk/portal/en/theses/evolving-selfmanagement-a-qualitative-study-of-the-role-of-social-networks-for-chronic-illness-management-in-primary-care(4cb673aa-009c-4962-af1b-05f909482221).html.
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Background: Much social network analysis in health related research has focused on the impact of social networks in the genesis of long term conditions and associated inequalities. However, there has been little research on the role of social networks in the management of such conditions. This is significant at a time when increasing policy emphasis is placed on individual self-care and assumptions are often made about social support, and familial support in particular. The management of chronic illness is complex involving the interplay of personal and contextual factors and comprised of a number of daily activities which include the ongoing negotiation of management into existing roles and the degree of individual engagement with self-management. Little is known about how these aspects interact to shape and influence management, what constitutes a social network for individuals with long term conditions and whether this changes over time.Methods: This study was embedded within the Whole Systems Informing Self-management Engagement (WISE) randomised control trial. It used a longitudinal qualitative design with initial face to face in-depth interviews, telephone follow-ups over a year and final face-to-face interviews where sociograms were also used to elicit network structure.Results: The findings suggest that who is in the social network, and the types of relationships which are present, influence how management practices are framed and the extent to which they are engaged with. Resources available to an individual through the network support, or undermine, engagement and changed over time. Networks included family, friends, GP, nurses and companion animals. The amalgamation of the different types of relationships that constitute the social networks are characterised by three typologies; the family focused network, the friend focused network and the health care professional focused network. These network types reflected where support was sought in times of crisis. In the absence of 'typical' sources accounts highlighted the substitutability of network members which was often narrowly sought from key individuals. Changes in illness management, either positive or negative, were framed around critical moments as they challenged existing norms of practice and involved significant network members. Further, co-morbid conditions placed an additional complexity to management and priorities were shaped by the recursive relationship with health services which seemingly influences patients' orientation in becoming either active assessors of health care or less engaged through being overwhelmed. Conclusions: This thesis challenges the notion of 'self'-management as an individual construct as many of the practices of illness management involved the support and/or negotiation of roles with others. Critical moments are a key point where normalised management practices are challenged and have particular relevance for future interventions which could foster these critical points to facilitate such changes in routines. Interventions and education need to reflect this wider setting in which chronic illness management occurs for the practices of management to become normalised into everyday routines.
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BRADEN, CARRIE JO GIFFORD. "SELF-HELP AS A LEARNED RESPONSE TO CHRONIC ILLNESS EXPERIENCE: A TEST OF FOUR ALTERNATIVE THEORIES (ADAPTATION, HELPLESSNESS, RESOURCEFULNESS)." Diss., The University of Arizona, 1986. http://hdl.handle.net/10150/183879.
Повний текст джерелаАнотація:
The purposes of this study were: (a) to identify which of four competing theories best accounted for self help as a learned outcome of chronic illness experience, and (b) to generate a Self Help Model that could be used to explicate self help as a learned response to chronic illness. The concepts of severity of chronic illness, intimate dependency reinforcers, self induced dependency reinforcers, cue outcome independence reinforcers, enabling skill, self help and life quality were specified in a causal format that allowed a competitive test of four different theories. The theories tested were instrumental passivity theory, self induced dependency theory, an adaptation of learned helplessness theory and learned resourcefulness theory. The study utilized a causal modeling design to assess a five stage model. A judgment sample of 786 individuals having a diagnosis of arthritis or an arthritis related condition were mailed questionnaires. Two hundred seventy-eight subjects responded, a 36 percent return rate. Seven scales using a visual analogue response format indexed the theoretical concepts. Reliability and validity estimates were conducted to assess psychometric properties of the instruments. Model parameters were estimated using multiple regression statistical techniques. Residual analysis was conducted to estimate violations of the causal model and statistical assumptions. Factors from one theory, the learned resourcefulness theory, emerged as more credible than factors from any single other theory. However, the data did evidence factors from other theories that were significant. Self induced sick role reinforcers and cue outcome independence reinforcers were found to slightly reduce perception of enabling skill (B = -.31 and B = -.12, respectively; R² = .11). Intimate dependency reinforcers and cue outcome independence reinforcers were found to slightly reduce perception of self help (B = -.34 and B = -.24, respectively; R² = .19). These factors helped to identify environmental and intra-person contingencies that led to reduction in self help. The learned resourcefulness factor, enabling skill, demonstrated the mediating skills that worked to enhance self help (B = .44; R² = .29). The Self Help Model generated to explicate self help as a learned response to chronic illness explained 50 percent of the variance in perceived self help. Self help had a direct positive impact on life quality (B = .61; R² = .46). By knowing the factors influencing a patient’s self help response to chronic illness experience, the nurse is better able to plan more effective self help promoting interventions for individuals, or groups of patients. Nurses who promote a self help response in those having a chronic illness could improve their life quality.
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Williams, Kevin. "Using experiential learning to facilitate pharmacy students' understanding of patients' medication practice in chronic illness." Thesis, Rhodes University, 2006. http://hdl.handle.net/10962/d1003955.
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This study originates from experiences which led me to question the way pharmacists are equipped to advise and support the medicine-taking practice of patients using chronic medication. The study offers a critical theoretical consideration of underlying perspectives informing pharmacy education. I propose following a critical realist ontological perspective, a social realist understanding of social structure and human agency, and a sociocultural epistemology. Based on these perspectives, I consider a sociological critique of ‘health’, ‘disease’, ‘illness’ and ‘sickness’ perspectives on medicine-taking, and of pharmacy as a profession. I then propose an experiential learning approach, with an emphasis on developing reflexivity through affective learning. I follow this with an illustrative case study. Following a critical discourse analysis of student texts from the case study, I conclude that there is evidence that experiential learning may prove useful in developing pharmacy students’ reflexive competency to support the provision of pharmaceutical care to patients using chronic medications.
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Kerr, Anna M. "Communication During First-Time Multidisciplinary Clinic Visits: Navigating Parental Decision Making and Uncertainty Management in Pediatric Chronic Illness." UKnowledge, 2014. http://uknowledge.uky.edu/comm_etds/24.
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Individuals with chronic illnesses must manage long-term uncertainty and decision making as they cope with the ways the illness influences almost every aspect of their lives. In the context of pediatric illnesses, parents assume the burden of uncertainty management and decision making during the diagnosis and treatment of their child’s illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. The first visit to a specialist is often more elaborate than a routine primary care visit. While previous research has explored parents’ decision making and uncertainty management during a child’s diagnosis and during end-of-life care, less is known about these experiences during the long-term management of a chronic illness through the care of multiple specialists. The aim of the current study was to explore uncertainty and decision making during parents’ first visit to a multidisciplinary clinic for the care of their child’s complex chronic illness. Data were collected through survey measures and semi-structured interviews with 30 parents after their first visit to a vascular anomaly clinic at a large Midwestern children’s hospital. The results suggest parents’ communication with the team of specialists helps them reappraise uncertainty, engage in effective uncertainty management, and feel validated in their decision making. However, the findings also indicate that parents face multiple uncertainty management dilemmas, including not wanting certain types of information, feeling overwhelmed by the amount of information they receive, and having different information preferences than their spouses. Ultimately, the results also have important implications for existing uncertainty theories and their application to parents’ uncertainty experiences.
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Gibbs, Lisa, and mikewood@deakin edu au. "'When the whole bloke thing starts to crumble... Men's access to chronic illness (arthritis) self management programs." Deakin University. School of Health and Social Development, 2003. http://tux.lib.deakin.edu.au./adt-VDU/public/adt-VDU20051110.130916.
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This thesis explores the issue of men's access to chronic illness self management programs from a social constructionist perspective. A combination of research methodologies was used; a quantitative analysis to confirm gender differences in levels and patterns of service use; a qualitative analysis to gain an increased understanding of the factors affecting men's access; and a trial to test the application of the research findings. The clients and services of Arthritis Victoria were chosen as the setting for this research.
The quantitative analyses were conducted on contingency tables and odds ratios and confirmed that men were under-represented as service users. The analyses also identified gender differences in patterns of service use. The qualitative analysis was based on a series of in-depth, semi-structured interviews. It was undertaken from a grounded theory approach to allow for the development of theoretical explanations grounded in the data. It was found that men's decisions to access chronic illness self management programs were strongly influenced by dominant social constructions of masculinity which constrained help-seeking and health management behaviour. However, the restrictive influence of hegemonic masculinity was progressively undermined by the increasing severity of the chronic condition until a crisis point was reached in terms of the severity of the condition or its impact on lifestyle. This resulted in a reformulation or rejection of hegemonic masculinity. The described conceptual framework was consistent for men from diverse social groupings, although it appeared less prominent in both younger and older men, suggesting that dominant social constructions of masculinity have the greatest influence on health decisions during the middle stage of adulthood when work and family obligations are greatest.
The thesis findings informed the development of some guiding principles for reviewing the structure and delivery of chronic illness self management services for men. The guiding principles will have direct application in the planning of Arthritis Victoria programs, and implications for other chronic illness self management programs in Australia, and also in Western countries with a similar health and sociocultural setting to Australia.
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Taylor, Jayne. "An investigation into factors associated with the provision of community children's nursing services to children with chronic illness and their families." Thesis, University of East Anglia, 2002. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.247116.
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Audulv, Åsa. "Being creative and resourceful : Individuals’ abilities and possibilities for self-management of chronic illness." Doctoral thesis, Mittuniversitetet, Institutionen för hälsovetenskap, 2011. http://urn.kb.se/resolve?urn=urn:nbn:se:miun:diva-13512.
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Individuals’ self-management styles are crucial for how they manage to live with illness. Commonly investigated factors include social support, self-efficacy, health beliefs, and demographics. There is a gap in the literature with regard to in-depth studies of how those factors actually influence an individual’s self-management. The aim of this thesis was to investigate the underlying mechanisms of self-management from the perspective of individuals living with chronic illness. Interviews were conducted with 47 individuals with various chronic illnesses, some of them repeatedly over two and a half years (a total of 107 interviews). The material was analysed with; constructive grounded theory, content analysis, phenomenography, and interpretive description. The Self-management Support Model identified aspects that influenced participants’ self-management: economic and social situation, social support, views and perspectives on illness, attribution of responsibility, and ability to integrate self-management into an overall life situation. For example, individuals with a life-oriented or disease-oriented perspective on illness prioritized different aspects of self-management. People who attributed internal responsibility performed a more complex self-management regimen than individuals who attributed external responsibility. In conclusion, individuals who were creative and resourceful had a better chance of tailoring a self-management regimen that suited them well. People in more disadvantaged positions (e.g., financial strain, limited support, or severe intrusive illness) experienced difficulty in finding a method of self-management that fit their life situation. These findings can inspire healthcare providers to initiate a reflective dialogue about self-management with their patients.Exploring individuals’ conceptions as a way to understand self-management among people living with long term medical conditions
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Robinson, Barbara Phillips. "A meta-analysis of effects of participation in internet support groups on outcomes related to chronic illness /." Connect to abstract via ProQuest. Full text is not available online, 2008.
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Thesis (Ph.D. in Nursing) -- University of Colorado Denver, 2008.Typescript. Includes bibliographical references (leaves 57-65). Free to UCD affiliates. Online version available via ProQuest Digital Dissertations;
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Meeboon, Sriwan. "The Effects of Patient and Nursing Unit Characteristics on Outcomes among Hospitalized Patients with Chronic Illness in Thailand." Diss., The University of Arizona, 2006. http://hdl.handle.net/10150/194037.
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The purpose of this cross-sectional correlational study was to examine the effects of patient and nursing unit characteristics on nursing-sensitive patient outcomes. The conceptual framework for this study is generated from the Quality Health Outcomes Model. The patient characteristics were patient age, gender, education, duration of illness, severity of illness, and illness representation. The nursing unit characteristics were nurse experience, nurse staffing, nursing unit competency, and group cohesion. Nursing-sensitive patient outcomes were patient’s confidence in self-care and patient’s perception of being well-cared for. Stratified sampling was employed to recruit a sample of 130 hospitalized chronically ill patients in 8 medical care units of 4 hospitals in Thailand. A face-to-face questionnaire interview was used to collect data from patients. A self-administered questionnaire was used to collect data from 90. Nurse staffing data were obtained from nursing administrative data for each unit. Multiple regression analyses were used to examine the relationships, test a mediator, and analyze the contextual effect of the study variables. Severity of illness (β = -.315, p <.01) and illness representation (β = -.234, p < .05) were significant predictors of patient’s confidence in self-care, when controlling for nursing unit characteristics. Illness representation partially mediated the relationship between severity of illness and patient’s confidence in self-care. Nursing unit characteristics were not significant predictors of patient’s confidence in self-care, when controlling for patient characteristics. There was a significant individual effect on patient’s confidence in self-care. Severity of illness (r = -.199, p < .05) and group cohesion (r = -.195, p < .05) were correlated with patient’s perception of being well-cared for. The findings of this study reinforce the need for acute care nurses to be aware of how chronically ill patients perceive health threats since illness representation directly affects patient’s confidence in self-care. Through understanding the role of illness representation as a mediator between severity of illness and confidence in self-care, it is suggested that nurses can improve patient’s confidence in self-care in severely ill patients by providing nursing interventions that promote positive illness representation.
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Williams, Samantha. "The unmet psychosocial and supportive care needs of young adults who have a parent with a non-communicable disease." Thesis, University of Wolverhampton, 2012. http://hdl.handle.net/2436/297631.
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Aims: Unmet needs have mainly been investigated with formal and informal adult caregivers and ill individuals within psycho-oncology; findings indicate unmet needs are associated with negative affective state and caregiver burden. Research relating to adolescent children’s experiences of unmet needs during parental illness has, in the main, been based upon parental reports or professional opinion, yet research suggests that parental reports can downplay the effects and it is important to ask the adolescent child for their opinion. Adolescence is a transitional time in development; this may make the illness experience and subsequent needs vary from those of formal and informal adult caregivers. This thesis pragmatically investigates adolescent children’s firsthand accounts of unmet psychosocial and supportive care needs when they have a parent with a non-communicable disease. Methods: Systematic Review: To inform the direction of the thesis and capture all relevant published literature, a comparative systematic review was carried on adolescent’s experiences of unmet needs when they have a parent with a NCD, cancer or psychological problem. The review was conducted using standardized procedures and guidance from the Cochrane collaboration. Interpretative Phenomenological Analysis: Qualitative methodology was used to investigate seven adolescent’s experiences of unmet psychosocial and supportive care needs in relation to having a parent with a NCD. Participants were recruited through institutions of further and higher education. Quantitative Research: Pearson’s correlation and multiple regressions were used to test associations between unmet needs, depression, stress, anxiety and quality of life, and to determine the applicability of the revised version of the Offspring Cancer Needs Inventory (OCNI) for individuals who have a parent with a NCD. One hundred and seven adolescent children completed the revised version of the OCNI, the DASS-21 (depression, anxiety, and stress) and AC-QoL (Adult carers’ quality of life) scales. Findings: Systematic Review: In the review 1479 papers were considered. Seven met the inclusion criteria, of these five papers related to cancer, one to chronic illness and one to psychological problems. Results suggest that adolescents had informational, supportive and recreational needs, and did not want to worry parents by asking them questions. The lack of hits and the disparity between illness groups is problematic in making comparisons and drawing definitive conclusions. Interpretative Phenomenological Analysis: Four interdependent themes emerged from the data, two relating to interpersonal needs (Information Needs and Support Needs), and two relating to intrapersonal needs (Need for 4 Acknowledgement and Need to be Them-Self), each had their own number of sub-themes. Adolescent’s had a variety of needs that could be partially met through honest and accurate information, interpersonal support and acknowledgment of their caring role within the family. The interdependence of the needs indicated that the fulfilment of one need has the potential of meeting other needs. Unmet needs were comparable to those of adolescent children who have a parent with cancer; as such it was deemed that the new version of the OCNI would be suitable for use with individuals who had a parent with a NCD. Quantitative Research: Ninety-Three percent of adolescents reported at least one unmet need. Analysis suggests that the unmet needs variables were co-dependent and correlated with depression, stress, anxiety, and quality of life. Certain unmet need variables predicted stress, anxiety, depression, and quality of life. Conclusion: The findings of this thesis indicate that adolescent children who have a parent with a NCD have a variety of unmet needs, and that these are associated with affective state and well-being. It is suggested that counselling psychologists are well placed to provide psychological and needs based interventions based upon the findings within this thesis. More research is required in this area to determine cause and effect; owing to counselling psychologists working with the lifespan they would be well placed to further the knowledge in this area.
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Santiago, Pia Bantegui. "Adherence to exercise following pulmonary rehabilitation of chronic obstructive pulmonary disease /." Diss., Connect to a 24 p. preview or request complete full text in PDF format. Access restricted to UC campuses, 2004. http://wwwlib.umi.com/cr/ucsd/fullcit?p3130214.
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Kelly, Tara B. "Plants, power, possibility : maneuvering the medical landscape in response to chronic illness and uncertainty." Thesis, University of Oxford, 2014. http://ora.ox.ac.uk/objects/uuid:7d502bb7-8773-41f8-b71e-fe3f78b89cb0.
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This thesis is concerned with plants, chronic illness and medicine in Oku, Northwest Region, Cameroon. I focus on patient strategies to obtain effective medical outcomes, and on how such outcomes may be obtained through seeking traditional medicine in Oku. I argue that biomedical notions of efficacy do not appropriately represent the central and diverse roles that plants play in traditional medicine nor do they correctly represent how people in Oku evaluate the efficacy of plant-based traditional medicine. I argue instead that efficacy must be understood in terms of the emic concept of power. This power is understood to be located in the Oku landscape, which is still uniquely forested and said to embody powerful ancestral spirits. With plants as the primary tangible material of power, and traditional doctors in Oku as those who claim exclusive rights to manipulate and disperse such power, I discuss traditional medicine in Oku as a system wherein power from the natural landscape is drawn upon to challenge harmful powers feared to derive from the social arena. Using the pragmatic and phenomenological approaches, I show how patients evaluate the efficacy of a medical treatment based on their bodily experiences, and how their actions, as revealed in their therapeutic trajectories, reveal their satisfaction or dissatisfaction with a given diagnosis and/or therapy. I discuss how enduring illness generates and exacerbates bodily, treatment-outcome, social, and psychological uncertainties. In this context, effective outcomes can be understood as those which address and limit these uncertainties and anxieties while offering ways to imagine hopeful prognoses. This thesis then outlines the major sources of uncertainty, people’s responses to such uncertainties, and what people might achieve in terms of limiting uncertainties by seeking traditional medicine in Oku.
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Bracey, Kimberly Vaunterice. "Experiences of Parents With Chronically Ill Children Regarding the Affordable Care Act." ScholarWorks, 2019. https://scholarworks.waldenu.edu/dissertations/6975.
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Ways in which the implementation of the Patient Protection and Affordable Care Act (ACA) affect parents with chronically ill children are not well understood. The purpose of this phenomenographic study was to gain greater insight into the perceived experiences of parents of chronically ill children regarding implementation of the ACA in a southern state. Argyris's intervention theory provided the framework for the study. Face-to-face interviews were conducted with a purposeful sample of 12 female parents who are caregivers of chronically ill children. Data were analyzed and coded to identify categories and themes. Findings indicated that parents view physicians and policymakers as key actors in their communities to create more equitable services for parents of chronically ill children through the expansion of Medicaid services in southern state. Many participants did not perceive that the ACA had made significant changes to services received prior to its implementation. Findings may assist health care providers, insurance companies, legislators, and other policymakers to develop appropriate health care policies and interventions to lessen the financial burden experienced by parents of chronically ill children. Providing more support services that address the physical, emotional, and financial needs of parents may improve the health outcomes of their chronically ill children.
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O'Hara, Patricia A. (Patricia Anne) Carleton University Dissertation Psychology. "Interactive computer animation pain assessment; application with older patients in a chronic care and rehabilitation hospital." Ottawa, 1996.
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