| 1. |
- Muganyizi, c, 1961-
(författare)
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Rape against Women in Tanzania : Studies of Social Reactions and Barriers to Disclosure
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This thesis assessed responses toward rape against women as experienced by the victims and victim supporters in the context of the interaction between victims, supporters, and formal agencies in Tanzania. The overall research design was based on triangulation with a combination of qualitative and quantitative methods. A semi-qualitative study, in which free listings and semi-structured questionnaires were used, explored social reactions from 44 community nurses and 50 rape victims (Paper I). A tool developed from this first study was utilized for collecting data on people’s attitudes and their behavior toward rape and rape victims from a representative community sample of 1505 men and women aged 18-65 years (Paper II). Both studies helped to access suitable rape victims and supporters who participated in the third study to share experiences on the process of rape disclosure to formal and informal social networks (Papers III and IV). The results highlighted the salient social reactions and how rape victims perceived the impact of these reactions. Half of the participants interpreted rape situations based on social relationships, circumstances, and social status of the woman, rather than the legal definition. Two-thirds of the adults explained they would express negative social reactions toward a victim in some rape scenarios, and this correlated with their attitudes towards rape and rape victims. A variety of barriers in the informal and formal networks with potentially negative impacts on rape reporting, service utilization and, health outcomes were identified. In conclusion, successful interventions aimed at improving people’s response to rape, rape disclosure and, health outcomes in Tanzania should assume a holistic approach to address the negative factors identified at the individual, family and, community levels without forgetting the normative context that appears to underlie most decisions and practice.
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| 2. |
- Hayati, Elli Nur, 1966-
(författare)
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Domestic violence against women in rural Indonesia : searching for multilevel prevention
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Domestic violence has been recognized globally as one of the most important Public Health concerns with severe negative health consequences for the exposed women. Through UN bodies several international milestones have successfully pushed attention towards worldwide improvements in the life situations of women. Since the ratification of the Convention on Elimination of All Forms of Discrimination against Women (CEDAW) in 1984, significant positive changes towards equality between men and women in Indonesia have been initiated, one being the enactment of the Domestic Violence Act in 2004. However, there is still a need to improve the knowledge about what preventive measures that are feasible and work in different settings. This thesis aims to contribute to a better understanding of appropriate prevention strategies against domestic violence in rural Indonesia by exploring: i) risk factors for domestic violence; ii) women’s ways of coping with exposure to violence; iii) men’s views on masculinity and violence within marriage; and iv) challenges faced by local service agency in managing services for women survivors of domestic violence.Methods: Data from a cross sectional population based study was used to analyze risk factors for physical and sexual abuse among a cohort of pregnant women in Purworejo district. Further, a qualitative phenomenological interview study was conducted to reveal the dynamics of coping among women survivors of domestic violence in the same district. A Grounded Theory study based on focus group discussions with men formed the basis for a situational analysis of the linkage between masculinity and the use of violence within marriage. Finally, a qualitative case study was performed to explore the management practices of a local service agency in the district, to understand the challenges faced in their efforts to address domestic violence.Results: Sexual violence was associated with husbands’ demographic characteristics (age and low educated) and women’s economic independence. Exposure to physical violence among women was strongly associated with husbands’ personal characteristics. The attitudes and norms expressed by women confirmed unequal gender relationships. Experiencing violence led women to using an elastic band coping strategy, moving between actively opposing the violence and surrendering or tolerating the situation. The national gender equality policies were shown to have played a crucial role in transforming gender power relations among men and women (the gender order) in the Indonesian society. Three different positions of masculinity were identified, the traditionalist, the egalitarian, and the progressive, with different beliefs about men’s role within marriage and with various levels of accepting the use of violence. Long term structural preventive efforts and individual interventions targeted to the conflicting couples were preferred over reporting the abuser to the authorities. The major challenges faced by the local service agency were the low priority given by the authorities, mirrored also in low involvement in the daily service by the assigned volunteers. The local agency also stammered in translating the current law and policies into a society that held on to traditional and religious norms regulating the relationships between men and women.Conclusion: Overall, this thesis illustrates that sociocultural traditions and religious teaching still viscously influence people’s attitudes and beliefs about the use of violence within relationships. Domestic violence has not been accepted as a criminal act but is still to a large extent seen as a private family affair. Culturally sensitive programs aimed to bridging the gap between the current laws and policies and the socio-cultural traditions need to be further developed to protect women from domestic violence and increase gender equity in the Indonesian setting.
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| 3. |
- Nordyke, Katrina, 1975-
(författare)
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Mass screening for celiac disease : a public health intervention from the participant perspective
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background Celiac disease (CD) is a chronic disorder in genetically predisposed individuals in which damage to the small intestine is caused by eating foods containing gluten. The prevalence has been shown to vary from around 1-3%, but most people with CD are undiagnosed. An option for finding those with unrecognized CD would include screening the general population, i.e., mass screening. However, screening identifies a pre-disease or disease condition in people who are presumed healthy and have not sought help. Therefore, the impacts of the screening process and being diagnosed through screening should be explored before such a public health intervention is considered. A population-based CD screening study involving 12-year-olds was undertaken in Sweden and provided an opportunity to explore these issues related to CD screening.Aims To make inferences about the potential impacts mass screening for CD can have on participants by exploring experiences and outcomes for participants involved in CD screening study.Methods and Subjects Both qualitative (short written narratives) and quantitative (questionnaires with EQ-5D instrument) methods were used. Children who participated in the CD screening study were invited to write narratives at the time of the screening, before screening results were known, describing their experience with the screening (n=240). The EQ-5D instrument was used to measure and compare health-related quality of life reported by participants at the time of the screening and one year after the screening-detected participants received their diagnosis (screening-detected n=103, referents n=483). Those with screening-detected CD were also invited to write narratives one and five years after their diagnosis. In these narratives the adolescents described how it felt to be diagnosed with CD, how it felt to live with CD, and if they thought all children should be screened (one-year follow-up n=91, five-year follow-up n=72). Results Even though some children experienced fear and anxiety during the screening, overall they had, or were provided with, tools that allowed them to cope well with the screening. The health-related quality of life reported by those with screening-detected CD was similar before and one year after diagnosis (and similar to that of the referents). We also found that after five years of living with the diagnosis there had been maintenance and evolution in the beliefs and practices of these adolescents. Being detected through screening and the threat of complications impacted how they felt about the diagnosis, coped with the gluten-free diet, and what they thought about CD screening. Five years after the screening-detected diagnosis the adolescents have adjusted to the disease and adapted new habits and coping strategies to deal with the gluten-free diet. However, there are still those who doubt the accuracy and benefit of the diagnosis. Conclusions Our findings suggest that it is possible for participants to avoid excess anxiety during CD screening. However, there was not consensus among participants that being detected and treated had improved their health-related quality of life or that the immediate benefits outweighed the harm caused by being detected in this way. When considering mass screening, the affect on the participants is important to take into account and our findings shed light on some of the potential impacts a CD mass screening could have on participants.
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| 4. |
- Eriksson, Malin, 1969-
(författare)
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Social capital, health and community action : implications for health promotion
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background; The overwhelming increase in studies about social capital and health occurring since 1995 indicates a renewed interest in the social determinants of health and a call for a more explicit use of theory in public health and epidemiology. The links between social capital and health are still not clear and the meanings of different forms of individual and collective social capital and their implications for health promotion needs further exploration. The overall aims of this thesis are to explore the relationship between social capital and health and to contribute to the theoretical framework of the role of social capital for health and health promotion.Methods; Data from a social capital survey were used to investigate the associations between individual social capital and self-rated health for men and women and different educational groups. Survey data were also analyzed to determine the association between collective social capital and self-rated health for men and women. A qualitative case study in a small community with observed high levels of civic engagement formed the basis for exploring the role of social capital for community action. Data from the same study were utilized for a grounded theory situational analysis of the social mechanisms leading to social capital mobilization.Main findings; Access to individual social capital increases the odds for good self-rated health equally for men and women and different educational groups. However, the likelihood of having access to social capital differs between groups. The results indicate a positive association between collective social capital and self-rated health for women but not for men. Results from the qualitative case study illustrate how social capital in local communities can facilitate collective actions for public good but may also increase social inequality. Mobilizing social capital in local communities requires identification of community issues that call for action, a fighting spirit from trusted local leaders, “know-how” from creative entrepreneurs, and broad legitimacy and support in the community.Conclusions; This thesis supports the idea that individual social capital is health-enhancing and that strengthening individual social capital can be considered one important health promotion strategy. Collective social capital may have a positive effect on self-rated health for women but not for men and therefore mobilizing collective social capital might be more health-enhancing for women. Collective social capital may have indirect positive effects on health for all by facilitating the ability of communities to solve collective health problems. However, mobilizing social capital in local communities requires an awareness of the risk for increased social inequality.
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| 5. |
- Frumence, Gasto, 1965-
(författare)
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The role of social capital in HIV prevention: experiences from the Kagera region of Tanzania
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background The role of social capital for promoting health has been extensively studied in recent years but there are few attempts to investigate the possible influence of social capital on HIV prevention,particularly in developing countries. The overall aims of this thesis are to investigate the links between social capital and HIV infection and to contribute to the theoretical framework of the role of social capital for HIV prevention. Methods Key informant interviews with leaders of organizations, networks, social groups and communities and focus group discussions with members and non-members of the social groups and networks were conducted to map out and characterize various forms of social capital that may influenceHIV prevention. A quantitative community survey was carried out in three case communities toestimate the influence of social capital on HIV risk behaviors. A cross-sectional survey was conducted to estimate the HIV prevalence in the urban district representing a high HIV prevalence zone to determine the association between social capital and HIV infection. Main findings In early 1990’s many of the social groups in Kagera region were formed because of poverty and many AIDS related deaths. This formation of groups enhanced people’s social and economic support to group members during bereavement and celebrations as well as provided loans that empowered members economically. The social groups also put in place strict rules of conduct, which helped to create new norms, values and trust, which influenced sexual health andthereby enhanced HIV prevention. Formal organizations worked together with social groups and facilitated networking and provided avenues for exchange of information including healtheducation on HIV/AIDS. Individuals who had access to high levels of structural and cognitive social capital were more likely to use condoms with their casual sex partners compared to individuals with access to low levels. Women with access to high levels of structural social capital were more likely to use condoms with casual sex partners compared to those with low levels. Individuals with access to low levels of structural social capital were less likely to be tested for HIV compared to those with access to high levels. However, there was no association between access to cognitive social capital and being tested for HIV. Individuals who had access to low levels of both structural and cognitive social capital were more likely to be HIV positive compared to individuals who had access to high levels with a similar pattern among men and women. Conclusion This thesis indicates that social capital in its structural and cognitive forms is protective to HIV infection and has played an important role in the observed decline in HIV trends in the Kagera region. Structural and cognitive social capital has enabled community members to decrease number of sexual partners, delay sexual debut for the young generation, reduce opportunities for casual sex and empower community members to demand or use condoms. It is recommended that policy makers and programme managers consider involving grassroots’ social groups and networks in the design and delivery of interventions strategies to reduce HIV transmission.
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| 6. |
- Fröding, Karin, 1974-
(författare)
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Public health, neighbourhood development and participation : research and practice in four Swedish partnership cities
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Det finns betydande skillnader i hälsa beroende på utbildning, socioekonomisk status, etnicitet, ålder och kön och det har konsekvenser för människors livslängd, livskvalitet och hälsa. Ojämlikheter i hälsa blir särskilt tydliga när man jämför olika geografiska områden, där vissa områden har hög koncentration av fattiga och socialt utslagna människor med dålig hälsa, arbetslöshet och låg utbildning. Att vidta åtgärder mot de utbredda hälsoskillnader som finns mellan människor med vitt skilda förutsättningar är en viktig utmaning för hälsofrämjande arbete. En strategi för att minska skillnader i hälsa mellan människor är att arbeta med områdesutveckling i prioriterade bostadsområden. Ett svenskt samarbete, Partnerskap för Hållbar Välfärdsutveckling, bildades 2003 mellan Helsingborg, Norrköping, Västerås och Örebro, kommunala bostadsbolag i dessa städer, flera nationella parter samt forskare vid Örebro universitet. Det centrala i partnerskapet var att genom erfarenhetsutbyte, metodutveckling och kunskapsspridning arbeta för en hållbar välfärdsutveckling i prioriterade bostadsområden (ett område från varje stad valdes ut). Integrerat i detta arbete var forskningsprogrammet ”Den hälsosamma staden - social integration, nätverkspolitik och hållbar välfärdsutveckling”, som följt partnerskapet vetenskapligt mellan åren 2003 och 2010. Det är av stor betydelse att integrera politik, praxis och forskning för att få kunskap om förutsättningar för en hälsosam utveckling i utsatta bostadsområden. Detta är en unik del av det nästan sjuåriga partnerskapsarbetet. Avhandlingens övergripande syfte har varit att inom ramen för Partnerskap för Hållbar Välfärdsutveckling studera folkhälsostrategier och lokalt utvecklingsarbete i kommuner och bostadsområden med särskild betoning på boendes deltagande för en hälsosam utveckling. Avhandlingens första studie syftar till att beskriva och analysera strategiskt folkhälsoarbete och lokalt områdesutvecklingsarbetet i fyra svenska kommuner samt den tidiga implementeringsfasen av Partnerskap för Hållbar Välfärdsutveckling. Datamaterialet består av dokumenterade intervjuer med folkhälsosamordnare och områdesutvecklare, deltagande observationer och skriftliga dokument. Resultatet visar att det redan i början av partnerskapsperioden fanns formella strukturer för folkhälsoarbetet i kommunen, till exempel ett folkhälsopolitiskt program, en utsedd samordnare, ett kontor och administrativa resurser samt politiker med särskilt ansvar för folkhälsofrågor. I uppbyggandet av de formella strukturerna var också de svenska nationella folkhälsomålen ett viktigt underlag. Vad gäller det lokala bostadsområdes arbete kan det ta sig olika uttryck även om målet är det samma. I partnerskapet fanns också tidigt höga förväntningar KARIN FRÖDING Public Health, Neighbourhood Development, and Participation I 83 att det skulle fungera som en sammanhållande kraft för ömsesidigt lärande och en positiv utveckling av prioriterade bostadsområden. Avhandlingens andra studie syftar till att analysera vad som karaktäriserar människor som deltar i områdesutveckling. Boende från tre av partnerskapskommunerna svarade på en enkät och resultatet visade på att människor som försökt påverka politiken i kommunen på olika sätt i större utsträckning deltar i områdesutveckling. Denna påverkan kan ske genom att kontakta en politiker eller lämna in ett medborgarförslag. Högt engagemang och aktivt deltagande var oberoende av individens sociodemografiska faktorer såsom utbildning eller inkomstnivå. Det var endast personer födda utanför Norden som i mindre utsträckning deltog i områdesutveckling. Avhandlingens tredje studie syftar till att undersöka en områdesbaserad interaktion mellan professionella (anställda), boende och forskare i en av partnerskapets utvalda stadsdelar. Baserat på deltagande observation under två år visar studien ett entydigt resultat: för att processen skall fungera krävdes att deltagarna öppet diskuterade enskilda situationer, personliga åtaganden och ömsesidiga förväntningar. Vidare var det viktigt att demaskera makt och auktoritet bland dem som deltar i processen för att inte några skulle ha mer inflytande på arbetet än de andra. Tiden visade sig vara viktig, att processen fick ta den tid det tog med konsensus som ett ledord. Slutligen var det viktigt att acceptera olika nivåer av deltagande. Allt detta bidrar till att skapa en gemensam känsla av engagemang och demokratisk dialog som är så viktigt i ett interaktivt samarbete. I avhandlingens fjärde studie är syftet att studera utvecklingsprocesser för att nå hållbara strukturer för lokalt områdesutvecklingsarbete i de fyra partnerskapsstäderna. Arbetet i Partnerskap för Hållbar Välfärdsutveckling har liksom kommunerna och det lokal områdesarbetet följts mellan åren 2003-2009. Genom en serie studier inom forskningsprogrammet med intervjuer, enkäter, deltagande observation och dokumentanalys har det utformats en databas för fallstudier. Resultatet visar att det under partnerskapsperioden fanns byggstenar i form av politiskt stöd, lokala partnerskap och boendes deltagande i områdesarbetet. När Partnerskap för Hållbar Välfärdsutveckling upphörde fanns dock få hållbara strukturer för områdesutveckling kvar. Det politiska stödet för områdesutveckling var under partnerskapstiden konstant högt men cykliskt, vilket innebar att prioriteringar ändrades. I samtliga fyra studerade stadsdelar hade områdesarbetet delvis avstannat och politiskt stöd och resurser lagts på andra områden i respektive kommun. I ett lokalt partnerskapssamarbete mellan kommun och kommunalt bostadsbolag finns dock möjlighet att bilda hållbara strukturer när såväl det strategiska som det lokala involveras i den praktiska delen av områdesutveckling. Medborgarnas deltagande verkar också utgöra en viss hållbar struktur för områdesutveckling, trots minskat politiskt stöd och resurser. Sammanfattningsvis visar denna avhandling att ett partnerskap för lokalt folkhälsoarbete kan fungera som en sammanhållande länk för lärande och utveckling bland alla inblandade aktörer. För ett fungerande områdesutvecklingsarbete är den lokala kontexten av största vikt liksom formella strukturer och ett nationellt stöd. Det är dessutom nödvändigt att beakta alla boende som potentiella deltagare i områdesutveckling oberoende av utbildning, kön eller inkomstnivå. När ett projektbaserat partnerskap avslutas måste det dessutom finnas strukturer som kan ta vid efter projekttidens slut. Avslutningsvis visar avhandlingen att ett områdesbaserat samspel med deltagande av professionella, boende och forskare ställer krav på en öppen, jämbördig dialog med ett accepterande förhållningssätt till olika nivåer av deltagande samt stort tidsutrymme.
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| 7. |
- Kasenga, Fyson, 1963-
(författare)
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Making it happen : prevention of mother to child transmission of HIV in rural Malawi
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The devastating consequences of HIV/AIDS have caused untold harm and human suffering globally. Over 33 million people worldwide are estimated to be living with HIV and AIDS and a majority of these are in sub-Saharan Africa. Women and children are more infected particularly in sub-Saharan countries. Globally, an estimated number of 370 000 children were newly infected in 2007, mainly through mother to child transmission (MTCT). Implementation of prevention of mother to child transmission (PMTCT) programmes has been introduced in many sub-Saharan countries during the last years. Operational research was conducted to study the demand and adherence of key components within a PMTCT Programme among women in rural Malawi. This study was carried out at Malamulo SDA Hospital in rural Malawi and employed a mixture of both quantitative and qualitative approaches. Data sources included antenatal care (ANC), PMTCT and delivery registers, structured questionnaires, in-depth interviews with HIV positive women in the programme and focus group discussions with community members, health care workers and traditional birth attendants. Over the three year period of the study (January 2005 to December 2007), three interventions were introduced in the antenatal care (ANC) at the hospital at different times. These were HIV testing integrated in the ANC clinic in March 2005, opt-out testing in January 2006 and free maternal services in October 2006. A steady increase of the service uptake as interventions were being introduced was observed over time. HIV testing was generally accepted by the community and women within the programme. However, positive HIV tests among pregnant women were also experienced to cause conflicts and fear within the family. Although hospital deliveries were recognised to be safe and clean, home deliveries were common. Lack of transport, spouse support and negative attitudes among staff were some of the underlying factors. Further study on the quality of care offered in the presence of increased service uptake is required. Community sensitisation on free maternal care and male involvement should be strengthened to enable full utilisation of services. Additionally, service providers at facility and community levels, policy makers at all levels and the communities should see themselves as co-workers in development to reduce preventable maternal and infant mortality including MTCT of HIV.
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| 8. |
- Choowong, Jiraporn, 1971-
(författare)
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Barriers, Enablers and challenges in the practice of directly observed treatment for tuberculosis patients in a local Thai community
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Tuberculosis (TB) has presented a challenge to the public health community in Thailand, especially as regards patient adherence to TB treatment. Direct observed treatment (DOT) is recommended for promoting patient adherence to TB treatment. There is good evidence that DOT can significantly increase the patient adherence to TB treatment. However, the implementation of DOT has complex relationships to socioeconomic factors and Thai context issues. The overall aim was (1) to obtain a deeper understanding of what happens when the DOT is practised in a local Thai community, and (2) to generate knowledge for improving the implementation of DOT, and thereby improve patient adherence to TB treatment.The empirical data were collected in Trang province, in the southern region of Thailand, between 2013 and 2015. The sample of study I consisted of five District TB Coordinators and five TB clinic staff from the public health sectors in rural and urban areas. Phenomenographic analysis was used. Study II: Five focus group discussions were conducted with 25 village health volunteers and six family members; manifest and latent content analysis was used for the analysis. Study III: Twenty TB patients were interviewed, using grounded theory methodology. Study IV: A mixed-method systematic review was accessed through databases. Data from the selected studies were extracted and synthesized using thematic analysis. The fear of stigma of TB patients was considered a significant barrier to the practice of DOT and adherence to TB treatment (studies I, II and III). Lack of TB knowledge and skills among DOT observers were revealed as barriers to the practice of DOT (studies I and II). At the same time, social facilitation and TB patients’ positive thinking and self-awareness were considered enablers of patient adherence to TB treatment (studies I and III). Another result is to provide an empowerment approach for DOT observers, who, in turn, will increase the empowerment of TB patients to achieve adherence to TB treatment (study IV).This thesis contributes a deeper understanding of the perspective of healthcare providers, DOT observers and TB patients when DOT is practised in a local Thai community. A challenge from these results is to provide an empowerment approach towards DOT observers. The results of this thesis will be useful for policy-makers who will consider strategies for improving the implementation of DOT and enabling patient adherence to TB treatment in the Thai context.
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| 9. |
- Johansson, Helene, 1962-
(författare)
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En mer hälsofrämjande hälso- och sjukvård : hinder och möjligheter utifrån professionernas perspektiv
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduktion: Under de senaste decennierna har det förts en diskussion om behovet av att omorientera hälso- och sjukvårdens verksamhet för att på ett effektivare sätt bidra till befolkningens hälsa. Detta togs också upp som ett av målen i 2003 års svenska nationella folkhälsopolitik som sedan uppdaterades 2008. Målet ”en mer hälso- främjande hälso- och sjukvård anger att ett hälsofrämjande och sjukdomsförebyggande perspektiv ska genomsyra hela hälso- och sjukvården och vara en självklar del i all vård och behandling. Vårdpersonalen förväntas spela en nyckelroll i genomförandet. Deras inställning till och kunskap om hälsofrämjande kommer sannolikt att ha en stor inverkan på hur målet kommer att tillämpas i framtiden. Det övergripande syftet med denna avhandling är, att utifrån professionernas perspektiv, analysera möjligheterna till att omorientera hälso- och sjukvården mot en mer hälsofrämjande inriktning. De specifika frågeställningar som avhandlingen avser att besvara är hur vårdpersonalen uppfattar begreppen hälsa och hälsofrämjande, hur de uppfattar den hälsofrämjande rollen samt hur de uppfattar hinder och möjligheter för att ha en hälsofrämjande roll i det dagliga kliniska arbetet. Metoder: Avhandlingen baseras på fyra delarbeten utgående från två dataset, ett kvalitativt och ett kvantitativt. Sju fokusgrupper genomfördes med totalt 34 informanter från primärvård och olika sjukhuskliniker. Informanterna representerade sju av vårdens stora yrkesgrupper. Data analyserades med kvalitativ innehållsanalys. Uppfattningar och frågor som genererades av den kvalitativa datainsamlingen låg till grund för utformningen av en enkät, som pilottestades och användes i en undersökning. Av totalt 3.751 anställda som arbetade dagtid med kliniskt arbete i Västerbottens läns landsting inbjöds 1.810 att delta. Dessa representerade arbets- terapeuter, barnmorskor, dietister, kuratorer, läkare, sjukgymnaster, sjuksköterskor och psykologer. Huvudsakliga resultat och konklusion: Majoriteten av vårdpersonalen hade en holistisk syn på hälsa, samtidigt ansåg 40% att hälso- och sjukvården genomsyras av en biomedicinsk syn på hälsa. Begreppet hälsofrämjande framstod som diffust, svårgripbart och därmed svårt att tillämpa i praktiken. Detta var delvis kopplat till en brist på samsyn beträffande förhållandet mellan hälsofrämjande och sjukdoms- förebyggande. Avhandlingen visar att det finns ett starkt stöd för omorientering av hälso- och sjukvården mot en mer hälsofrämjande inriktning. Majoriteten av de tillfrågade ansåg att hälso- och sjukvården har stor betydelse när det gäller den långsiktiga hälso- utvecklingen i befolkningen och såg ett behov av att utveckla den hälsofrämjande och sjukdomsförebyggande rollen för att på sikt få en effektivare hälso- och sjukvård. Önskan att fokusera mer på hälsofrämjande och sjukdomsförebyggande rapporterades signifikant oftare av kvinnor än män och av primärvårdspersonal jämfört med sjukhus- personal. Speciellt viktigt att beakta är att män och läkare, dvs grupper som ofta har en hög maktposition, rapporterade mindre positiva attityder till en mer hälsofrämjande hälso- och sjukvård, samtidigt som psykologer, arbetsterapeuter och sjukgymnaster oftast rapporterade det motsatta. En medvetenhet om maktrelationerna spelar därför en strategisk roll i förändringsprocessen. De vanligaste hindren för att ha en hälso- främjande roll i det dagliga kliniska arbetet var en pressad arbetssituation, brist på riktlinjer och otydliga mål. Ledningens stöd är avgörande för tillgången till tid och andra resurser som krävs för vårdpersonal att bedriva hälsofrämjande och sjukdomsförebyggande arbete.
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| 10. |
- Khatami, Alireza, 1970-
(författare)
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It is on my skin, on my soul, and on my life : development of a disease-specific quality of life instrument for adult patients with acute cutaneous leishmaniasis in Iran
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Cutaneous leishmaniasis (CL), is the most common form of a group of diseases known as leishmaniases. They are caused by obligatory intracellular protozoa from the genus Leishmania and transmitted by sandflies. Over 350 million people are at risk of getting leishmaniasis and 1,000,000 to 1,200,000 individual get CL each year, the majority of them are living in developing countries. CL may affect a patient’s physical and mental health, and social relations impairing his/her quality of life (QoL).Aim: The aim of this thesis was to develop a disease-specific instrument for measuring QoL in adult patients suffering from the acute form of CL in Iran according to a needs-based approach.Methods: This thesis used a mixed-method approach and was based on two quantitative studies and one qualitative study. The first study was a systematic review on the randomized controlled clinical trials (RCTs) conducted on acute CL in the Old World. The second one was a qualitative content analysis study conducted through interviews with patients with CL in Iran. The third study was a psychometric evaluation of an instrument that was developed according to the results of the second study. For making a QoL instrument with fundamental measurement properties, the Rasch method was used.Results: The findings of the first paper demonstrated that the majority of the 50 reviewed RCTs were of poor quality of conduct and report. An important finding was that none of those studies included a patient-reported outcome in their primary, secondary, or even tertiary outcome assessments. To obtain the patients’ lived experience and perspectives on their disease, 12 individual in-depth interviews were conducted with patients with CL. Four themes were developed: "Fearing an agonizing disease" reflects patients' experiences of disease development resulting in sadness and depression, "struggling to cope" and "taking on the blame" both illustrate how patients experience living with the disease, which included both felt and enacted stigma as major social concerns. "Longing for being seen and heard" refers to patients' experiences with healthcare as well as their expectations and demands from communities and healthcare system to be involved in closing the knowledge and awareness gap. The third study was conducted as a survey on 107 patients with acute CL answering 50 questions with four response categories focusing different aspects of QoL, named “P-CL-QoL”, an acronym for Preliminary Cutaneous Leishmaniasis Quality of Life instrument. The Rasch fitness criteria for the original 50- item questionnaire indicated that it was not optimal for fundamental measurement of the QoL in CL patients. Two more Rasch models were developed by merging the last two response categories and making a 3-point Likert scale, and the three last response categories, making a dichotomized “Yes” and “No” response choices to each item. The final 34-item instrument with dichotomous responses showed improved measurement properties including very good targeting and item-separation index, internal consistency (Chronbach’s α=0.94), and a log-likelihood Chi square=2242.50 (degree of freedom=2640, and P=1.000) indicating excellent fitting to a Rasch model. This version was named Cutaneous Leishmaniasis Quality of Life instrument (CL-QoL). According our findings, the mean (±standard deviation) of raw scores and 0-34 scaled measures of the participants were 15.9 (±9.2) and 16.8 (±6.9), respectively. The impact of CL on the QoL of the patients was none to minimal in 17.0 %, mild in 25.0 %, moderate in 31.8 %, high in 12.5 %, and very high in 13.7 % of the participants. QoL impairment was not related to the sex and age of the individuals, geographic location where CL was caught, duration of the disease, and its severity (P>0.05).Conclusion: This thesis demonstrated that there is a lack of patients’ reported outcomes in clinical trials on CL, and that mental and social dimensions of CL are complex and adversely affect patients' lives by causing psychological burden and limiting their social interactions. The health authorities have to plan programs to increase the disease awareness in communities and among healthcare professionals to prevent the existing stigma and improve patients' social condition and medical care. While we could suggest a diseases-specific QoL measurement instrument through our third study, we acknowledge that the developed instrument may not be optimal and has to be validated in other populations, preferably using the Rasch method.
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