This study aimed at exploring chronic illness from both the perspectives of the patient, living with the illness and the professional, treating the illness. The epistemological framework is social constructionism. Qualitative research was selected as the research approach. Three in-depth interviews with three patients, suffering with a chronic illness were conducted, as well as three interviews with professionals, who had experience with patients diagnosed with chronic illnesses. Thematic analysis was the method used for the analysis of data. The stories of the participants were reconstructed in terms of themes. A comparative analysis for both participants groups was done, and linked to the relevant literature This study created an understanding of the complexity of chronic illness. The themes identified, highlighted the importance of the patient-professional relationship, specifically in the context of chronic illness. / Psychology / M.A. (Clinical Psychology)

Urbach-Wiethe Sindroom (beter bekend as lipo"ied prote"inose of hyalinosis cutis et mucosae) is 'n seldsame, outosomaal-oorerflike siekte. Die kenmerkendste simptome van die siekte is vel- en slymvliesveranderinge wat deur 'n neerslag van ekstrasellulere hialienagtige materiaal van onbekende oorsprong veroorsaak word. Die vel word maklik beseer, genees stadig en lelike, pokagtige letsels ontstaan. 'n Fyn, korrelagtige neerslag op die ooglede, die sogenaamde "kralestringvoorkoms" kenmerk die siekte, sowel as heesheid, die prominentste en lastigste simptoom, wat sedert geboorte teenwoordig kan wees. Radiografie en tomografie toon bilaterale,boontjievormige verkalking op die temporale lobbe van die brein, wat tot epileptiese aanvalle en ander neuropsigiese simptome soos geremde geheue en aggressie lei. Heesheid veroorsaak kommunikatiewe beperkinge vir die lyer,terwyldie opsigtelike velletsels aversiewe- en die verkalkings onsigbare beperkinge meebring. Die lyer aan Urbach-Wiethe Sindroom kan volgens die beginsels en kriteria van die medies-kliniese, die persoonsgeorienteerde en die sosio-omgewingsperspektiewe gestremdheid ondervind. Teoreties kan die lyer se belewinge van sy andersheid en die nie-aanvaardingdeurdie gemeenskap, soos by gestremdes,die handhawing van sy selfagting rem, sodat 'n negatiewe selfkonsep tot skuldgevoelens, angsbelewinge en depressie kan lei. 'n Betekenisvolle verband is in die empiriese ondersoek tussen die graad van aantasting en wanaanpassing in die lyer se leefwereld gevind. Die lyers wat ernstig aangetas is, identifiseer moeilik met hulle fisieke voorkoms. ldentiteitsvorming word gerem en die selfagting is negatief. Hulle openbaar 'n negatiewe selfkonsep en depressiewe gevoelens met selfmoordgedagtes. Hulle relasies en sosialisering is problematies en hulle voel hulle word nie deur die gemeenskap aanvaar nie. Die lyers ondervind 'n algemene wanaanpassing in hulle leefwereld. 'n Geval van paranoia is ook gevind. Alhoewel die ouers vrae oor die toestand het en sekere emosies beleef, kan die meeste van hulle die situasie hanteer. Riglyne vir 'n terapeutiese begeleidingsprogram vir lyers aan Urbach-Wiethe Sindroom, wat op die verbetering van die selfkonsep; die hantering van depressie, aggressie en woedebuie, asook die verbetering van relasies en sosialisering gerig is, is saamgestel. 'n Ondersteuningsgroep waarby lyers en hulle ouers kan inskakel, is gestig. / Urbach-Wiethe Syndrome, also known as lipoid proteinosis or hyalinosis cutis et mucosae, is a rare, recessively inherited, autosomal disorder characterized by lesions of the skin and mucosae, caused by widespread deposition of hyaline material of unknown etiology. The skin injures easily and heals slowly with "pock­ like" lesions. Bead-like deposits on the eyelids, called "string of pearls",are often found. Present since early infancy, hoarseness is the first, and most striking, irritating symptom. Bean-shaped intracranial calcification within the temporallobes of the brain in the area of the hippocampus, shown up by radiography and tomography, may cause epileptic seizures and other neuropsychological complications like impaired memory and aggression. The sufferer experiences communicative impairment through hoarseness, aversive impairment because of the conspicuous lesions, and concealed impairment as a result of the calcifications. According to the medical-clinical,person-orientated and socio-environmental perspectives on disability, a sufferer of Urbach-Wiethe Syndrome may experience disability. Like disabled persons, the sufferer finds it difficult to identify with his physical appearance. Impaired identity formation and low self-esteem cause a negative self­ concept. Feelings of guilt,anxiety and depression result from perceived dissimilarity, social rejection and low self-esteem. Socialising is adversely affected. A significant relationship was found in the empirical study between the extent to which the sufferer is affected and the degree of maladjustment in his life-world. Seriously affected sufferers display a negative self-concept and feelings of depression with suicidal thoughts. Socialisation and relationships are problematic and sufferers feel unaccepted by the community. General maladjustment in the life-world is experienced. A case of paranoia was reported. Except for some questions and unresolved feelings about the disease,most parents are able to cope with the situation. Guidelines have been set for a therapeutic programme for sufferers from Urbach­ Wiethe Syndrome aimed at enhancing self-concept, coping with depression and aggression, and improving relationships and socialising. A support group has been ounded for sufferers and their parents. / Psychology of Education / D. Ed. (Sielkundige Opvoedkunde)

This thesis called 'Socio-Pedagogical Assistance to Partially-Autonomous Patients and to Their Families" (as conducted at GARC Kladno, s.r.o.). aims to map the health and social situation of partially-autonomous patients (hereafter PAP) as a result of a chronic condition, a disability or geriatric conditions in the context of their actual living environment. The theoretical part deals with health and social challenges confronted by PAP focusing on social and individual rehabilitation in conducting daily life. It is divided into five parts. Part One describes health issues faced by PAP with emphasis on particular issues which affect this group. Part Two defines the basic terminology of disability and autonomy.Through work experience it was possible to provide first-hand observation of particular issues which affect this group, e.g. physical disability as a factor limiting autonomy. Both subjective and objective observations of this group can weigh heavily on the value of the outcome. Part Three places PAP in his environment and at the same time evaluates the role of the family members and various services available to PAP under the Social Services Act No. 108/2008 Coll. Part Four looks into rehabilitation services available to PAP and other assistance available to them. Particular methodologies...

The research endeavoured to voice the told and untold stories of adolescents living with HIV undergoing continual disease management at the Kalafong Hospital Paediatric HIV Clinic. Through the telling of their stories the adolescents had the opportunity to make sense of their illness experiences. Some of the participating adolescents had limited opportunities to discuss their experiences with friends or family members. The research was completed within the qualitative social constructionist narrative approach. Six adolescents from the clinic participated voluntarily in the research. The participants attended the clinic regularly for disease management and were on ART. The study explored the experiences of the adolescents by means of two semi-structured individual interviews. Expressive art in the form of drawings and poetry were used to aid storytelling. Through collaborative exploration of the adolescents‟ stories, it became possible to co-construct the meanings that they attached to their experiences of HIV, which informs their identity. The interview transcripts were analysed, re-storied, and placed within a narrative framework of understanding, based on the three-dimensional space approach by Clandinin and Connelly (2000). The framework of understanding aided the researcher to look at the different contexts, identities, and social significant aspects found in the adolescents‟ stories. Multiple identities were constructed in their stories such as patient, scholar, friend, family, and athlete identities. These were constructed based on their experiences in the family and cultural, school and social, and medical contexts. The adolescents attributed different meanings to their stories of living with HIV such as that of normality, sameness, realism, and difference. The unique and similar aspects that were found in the adolescents‟ stories were identified and discussed with reference to various concepts such as disclosure, adherence, and ART. It was found that status disclosure was done by staff at the clinic and it occurred during young adolescence. All the adolescents, except one who was not aware of her status, showed insight into the chronic nature of their disease. Five adolescents‟ statuses have not been disclosed to anyone outside the families. In only one instance, the family was not aware of his status. Most adolescents assumed primary responsibility for ART. They expressed conflicting ideas about the role of ART. Some adolescents had to cope with side effects, the possibility of accidental status disclosure and non-adherence, and fears of rejection. The research, employing a narrative approach, endeavours to contribute to create a holistic understanding of HIV/AIDS in the context of health care. Lack of communication and impersonal staff interactions with patients were identified as barriers to disease management. The research recommends that the clinic should provide ongoing support to the adolescents with regards to disclosure of their status to friends, family, and partners, and adherence to medication. The social significant aspects found in the adolescents‟ stories will be disseminated to the staff at the clinic. This will assist the multi-disciplinary team to gain a better understanding of the reality of the adolescent and how these experiences inform their identity. / Dissertation (MA)--University of Pretoria, 2010. / Psychology / unrestricted

Diabetes mellitus ist mit die häufigste Volkskrankheit auf der Welt. 371 Millionen Menschen sind weltweit erkrankt und bis zum Jahr 2030 wird die Zahl auf ca. 552 Millionen ansteigen. Doch wie erleben PatientInnen ihre Welt mit Diabetes und wie bewältigen sie ihren Alltag? Mit Hilfe der systematischen Metaphernanalyse untersuchte ich qualitativ die subjektive Welt von Typ–1 DiabetikerInnen und vor allem ihre Sprache. Mit dieser Methode wollte ich Einblicke in das Denken und Handeln von Betroffenen gewinnen und Rückschlüsse zur Bewältigung ziehen.

No description available.

No description available.

Utilizing the longitudinal component of the National Population Health Survey (NPHS) (1994/1995-2000/2001), designed to collect comprehensive information on the health status of the Canadian population and related socio-demographic information, differences in health status between immigrants and non-immigrants (i.e., native-born individuals) were explored. Specifically, the analysis investigated how chronic conditions influence the health of immigrants, the role of stress and mental health upon immigrant health status, and the influence and role of previously underrepresented variables such as age and arrival cohorts on foreign-born health status. The conceptual approach of this project draws upon a 'population health' perspective, which suggests that the most influential determinants of human health status are non-medical in nature, but rather can be identified as the social and economic characteristics of individuals. Analysis was completed through the use of ordinary least squares stepwise regression and logistic stepwise regression in association with descriptive stochastic methodologies. Analysis of the mental health and stress variables suggests that, contrary to what has been expressed in literature in the past, both immigrants and the native-born do not perceive stress, distress, or depression to be major problems or health concerns in their lives. Furthermore, the analysis indicated, as was expected, that older immigrants are at greater risk of developing more chronic conditions relative to younger groups, and that arrival cohorts, the period in which an immigrant entered the nation, do exert a considerable influence on the health status of the foreign-born. Surprisingly, this analysis indicates that the Healthy Immigrant Effect (HIE), which proposes that recent immigrants, regardless of country of birth, tend to be in better health than the Canadian-born population upon entering the nation, may be more apparent than real, especially when investigating mental health and stress conditions amongst the foreign-born. / Thesis / Master of Arts (MA)

Hintergrund: Im Umgang mit einer chronischen Erkrankung suchen Patienten im Internet oft nach Erfahrungsberichten von anderen Betroffenen. Internetseiten mit Patientenerfahrungen können Unterstützung bieten, das Gesundheitsverhalten beeinflussen und Entscheidungshilfe in medizinischen Fragen sein. Eine Evaluation derartiger Internetangebote ist aber notwendig, um ihre tatsächliche Qualität und den Nutzen für Patienten bewerten zu können. Exemplarisch sollte in einer Querschnittsstudie untersucht werden, wie Patienten mit einer chronischen Erkrankung das Internetportal www.krankheitserfahrungen.de bewerten. Methode: Insgesamt 119 Personen mit einer chronischen Erkrankung nahmen an der Studie teil. Sie beurteilten die Internetseite mit dem eHealth Impact Questionnaire (eHIQ). Das Nutzerverhalten der Teilnehmer wurde durch Logfiles aufgezeichnet. Zusätzlich wurden soziodemographische Merkmale und die gesundheitsbezogene Lebensqualität mit dem SF-12 erhoben. Ergebnisse: Frauen neigten eher dazu, Krankheitserfahrungen im Internet mit anderen zu teilen (p=,015). Im eHIQ zeigte sich eine positive Bewertung der Internetseite, besonders im Bereich Information und Darstellung. Dies bestätigte auch das Nutzerverhalten der Teilnehmer. Die Hälfte verweilte länger auf der Webseite als von der Studienleitung vorgegeben. Aufgerufen wurden besonders Webseiten-Inhalte, die zur eigenen Erkrankung passten. Teilnehmer mit einem höheren Bildungsabschluss sahen sich mehr Interviewausschnitte (p=,022) und Thementexte (p=,006) an. Prädiktoren für eine positive Bewertung der Webseite waren eine offenere Haltung zum Teilen von Krankheitserfahrungen im Internet (OR=1,039; p=,004) und ein höherer Bildungsabschluss (OR=2,100; p=,098). Schlussfolgerungen: Internetseiten wie krankheitserfahrungen.de scheinen dem Bedürfnis von Patienten nach Erfahrungsaustausch im Internet gerecht zu werden. Die gewählte Präsentationsmethode der Inhalte entspricht offensichtlich eher dem Interesse nach Informationsrecherche unter Patienten mit höherem Bildungsabschluss. Andere potentielle Nutzer würden wahrscheinlich eine größere Interaktivität – statt Informationen – bevorzugen. Die hier vorgelegte Evaluation eines Internetportals mit Patientenerfahrungen belegt exemplarisch den Nutzen und zeigt konkrete Verbesserungspotentiale auf.