| 1. |
- Aléx, Lena
(author)
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Äldre människors berättelser om att bli och vara gammal tolkade utifrån genus- och etnicitetsperspektiv
- 2007
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of the five studies that make up this thesis is to elucidate constructions of being old from the perspectives of gender and ethnicity. One of the studies uses quantitative data and four use qualitative data.The sample in study I consisted of 125 participants from the Umeå 85+ study, aged 85 to 103 years old, who were able to use Likert scales in responding to questions. Studies II and III involved content analysis of interviews with old persons scoring on the extremes of the resilience scale. In study IV, interviews with nine Sami women were analysed using grounded theory. In study V, four interview situations were subjected to discourse analysis.Study I showed statistically significant correlations between the scales measuring resilience, sense of coherence, purpose in life and self-transcendence. These scales were supposed to measuring a common dimension, which is here interpreted as “inner strength”. There was a significant correlation between women’s “inner strength” and perceived mental health.The femininities found were associated with “being connected”, “being an actor”, “living in the shadow of others” and “being alienated”. The masculinities found were associated with “being in the male centre”, “striving to maintain the male facade” and “being related”. The femininity associated with “being an actor” and the masculinity associated with “being in the male centre” were pronounced in those participants assessed as having high resilience.Old Sami woman were found to be balancing within various discourses, including being a reindeer owner versus not owning reindeer, being Sami versus being Swedish, speaking in Sami versus speaking in Swedish, dreaming about the past versus looking to the future, being equal to men versus living in the shadow of the male herders, and changing for survival versus striving to retain uniqueness as a Sami.Study V revealed that shifts in power between the interviewer and the interviewed can be related to the discourses of age, gender, education, body, ethnicity and ideology.This thesis presents a complex picture of what it means to be among the oldest old. The ageing, gendered and ethicised selves cannot be seen as socially and culturally fixed. For the women, the femininity expressed in “being connected” involved being satisfied, content and having positive relationships. “Being an actor” involved a stress on the person’s own strength and own choices. The femininities experienced as “living in the shadow of others” and “being alienated” generated narratives about dissociation and loneliness. For the men, it seemed important to relate to themselves and to other men. However, the masculinity expressed in “being related” involved an alternative form of masculinity, focusing on the importance of daily work, new relationships, and reflecting on the meaning of life. The Sami women showed strength in being able to position themselves between various discourses, but their narratives also showed tender sadness when they spoke of their longing for the past and for their mother tongue. The reflection on how narratives are constructed by both the interviewed and the interviewer in relation to their access to various discourses of age, gender, education, ethnicity and ideology in different interview situations can be important for increasing awareness of the role of these discourses. Various ways of constructing femininities and masculinities must be studied if we are to avoid ageism developing in society. Analyzing and reflecting on the importance of age, gender and ethnicity from a constructivist perspective may reduce stereotypical descriptions of the oldest old.
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| 2. |
- Andersson, Sofia, 1972-
(author)
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Vård i livets slutskede på särskilt boende för äldre personer : närstående och vårdpersonals skattade och berättade erfarenheter
- 2017
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Doctoral thesis (other academic/artistic)abstract
- Bakgrund I Europa, blir det allt vanligare att äldre personer dör på särskilt boende i stället för på sjukhus. Särskilda boenden spelar därför en viktig roll när det gäller vård i livets slutskede. Målet med palliativ vård för personer med livshotande sjukdom och deras närstående är att öka livskvaliteten och lindra lidande. Strukturerade vårdplaner såsom Liverpool Care Pathway for care of the dying (LCP) kan vara ett sätt att öka vårdkvaliteten. Det saknas dock forskning om vård i livets slutskede på särskilda boenden när en strukturerad vårdplan har använts.Syfte Det övergripande syftet med avhandlingen var att beskriva vård i livets slutskede på särskilt boende för äldre personer utifrån närstående och vårdpersonals skattade och berättade erfarenheter.Metod Avhandlingen baseras på två kvantitativa (I, II) och två kvalitativa (III, IV) studier. Studie I baseras på frågeformuläret Views of Informal Carers – Evaluation of Services (VOICES) som har besvarats av närstående (n = 189) efter att en anhörig har dött. Data har därefter analyserats med beskrivande och jämförande statistik. Studie II baseras på data om alla förväntade dödsfall (n = 22 855) som registrerats i Svenska palliativregistret (SPR). Dödsfallsenkäten har besvarats av vårdpersonal och svaren har sedan analyserats med beskrivande statistik och univariat och multipel logistisk regressionsanalys. Studie III baseras på fokusgruppsintervjuer och enskilda intervjuer med vårdpersonal. Studie IV baseras på enskilda intervjuer med närstående. Data från studie III och IV har analyserats med hjälp av kvalitativ innehållsanalys.Resultat Resultatet i studie I visar att majoriteten av de närstående skattade att den äldre personen fick tillräcklig hjälp såväl med personlig vård (78,5 %) som med sjukvård (93,0 %) de sista tre dagarna i livet. De närstående (86,2 %) rapporterade att de var informerade om att det var sannolikt att den äldre personen skulle avlida och majoriteten (94,1 %) av de äldre hade avlidit på önskad plats. Resultatet visade dock på hög förekomst av smärta (46,5 %) och andnöd (55,9 %). Det var ingen skillnad mellan åldersgrupperna när det gällde smärta men de äldre < 85 år hade signifikant högre förekomst av andnöd (70,6 %) jämfört med de äldre äldre, ≥ 85 år, (47,5 %). De äldre, < 85 år, hade signifikant oftare symtomlindring för andnöd (53,1 %) jämfört med äldre äldre, ≥ 85 år, (31,8 %).Resultatet i studie II visar hög förekomst av smärta (68,8 %) och ångest (44,0 %). Faktorer associerade med symtomlindring av smärta, illamående, ångest och andnöd var dels att validerat smärtskattningsinstrument hade använts, dels att munhälsan var bedömd. Starkast samband var det mellan symtomlindring av tre symtom (smärta, andnöd och ångest) och att injektioner var förskrivna vid behov.Resultatet i studie III visar att vårdpersonalen upplevde sig tryggare efter implementeringen av LCP genom att de hade fått ett gemensamt förhållningssätt, kände stöd att skräddarsy vården utifrån den döende personens individuella behov, kände stöd att involvera närstående i beslut och i vården samt hade blivit mer medvetna om vårdmiljön.Resultatet i studie IV visar att närstående upplevde sig tryggare i en välbekant och varm atmosfär, att vara kontra inte vara involverad i vård i livets slutskede och att bli tröstade genom att bevittna vårdpersonalens strävan att lindra lidande.Konklusion Resultatet från studierna i den här avhandlingen pekar på hög vårdkvalitet i livets slutskede på särskilt boende genom god omvårdnad, men resultatet pekar också mot förekomst av inadekvat symtomlindring och hög förekomst av smärta, andnöd och ångest de sista dagarna i livet. Det framkom ett tydligt samband mellan ordinerade injektioner vid behov och symtomlindring av smärta, illamående och ångest. Resultatet indikerar även vikten av att använda smärtskattningsinstrument och göra munhälsobedömningar för symtomlindring vid vård i livets slutskede. Således kan ett sätt att öka vårdkvaliteten för döende personer vara att det finns ordinerade injektionsläkemedel vid behov mot vanliga symtom, att använda validerade smärtskattningsinstrument och att göra munhälsobedömningar. Det framkom också att användandet av en standardiserad vårdplan såsom LCP kan vara ett sätt att förbättra vården för de äldre personerna i livets slutskede. Såväl vårdpersonalen som de närstående upplevde stöd av den struktur för bedömningar och vårdaktiviteter som LCP ger. Vårdpersonalen upplevde också stöd i att involvera närstående i vården och i vårdrelaterade beslut.
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| 3. |
- Antonsson, Helena, 1962-
(author)
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Interaktion i särskilt boende för personer med utvecklingsstörning och utmanande beteende
- 2013
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Doctoral thesis (other academic/artistic)abstract
- Bakgrund: Många personer med utvecklingsstörning har kommunikativa svårigheter och har därför behov av att utveckla olika sätt att kommunicera för att kunna förstå andra och göra sig förstådda. Svårigheter i kommunikationen påverkar interaktionen mellan personer med utvecklingsstörning och deras vårdare. Detta ställer höga krav på vårdare att kunna tolka och förstå den enskilda individens sätt att uttrycka önskningar och behov. På samma sätt riskerar vårdares budskap att missförstås. Om vårdaren misslyckas att förstå den boendes kommunikation och vice versa, kan det leda till situationer med utmanande beteende exempelvis i form av vägran, verbal eller fysisk aggressivitet.Syfte: Det övergripande syftet med avhandlingen är att studera interaktion mellan vuxna personer med utvecklingsstörning och vårdare i gruppbostäder, samt att studera effekter av en utbildningsintervention för vårdare som arbetar i gruppbostäder.Metod: Avhandlingens samtliga delstudier har genomförts i gruppbostäder för personer med utvecklingsstörning bland boende och vårdare i ett län i norra Sverige. I studie I insamlades data kring 556 personer med utvecklingsstörning. I studie II och III deltog 16 vårdare och 11 personer med utvecklingsstörning. I studie IV deltog 7 vårdare. Studie I bygger på personalens skattningar av funktionsnivåer och förekomst av begränsningsåtgärder. I Studie II och III utgörs data av videoobservationer och narrativa intervjuer. I studie IV användes flera datainsamlingsmetoder i en mixed method design med både vårdarnas skattningar, med hjälp av instrument och semi-strukturerade intervjuer. Analys av materialet i studie II, III och IV har gjorts med kvalitativ innehållsanalys och i studie I och IV har data analyserats statistiskt.Resultat: I studie I framkom att av 556 boende hade 99 (18%) varit föremål för fysiska begränsningsåtgärder under den senaste veckan. Av dessa 99 hade nästan alla varit föremål för mer än en typ av begränsningsåtgärd. Den vanligaste begränsningsåtgärden var bälte i stol (74%). Användningen av begränsningsåtgärder var relaterade både till fysiska funktionsnedsättningar och till beteende.I studie II reflekterade vårdare över videoinspelad interaktion där vårdarna medverkat, både framgångsrik och misslyckad interaktion. Exempel på framgångsrik interaktion var att förstå tecken, kunna möta behov och hantera situationer med utmanande beteenden. Vårdarna reflekterade över att framgångsrik interaktion ledde till säkerhet, trygghet och självförtroende hos de boende. Vårdarna reflekterade även över de konsekvenser misslyckad interaktion fick i form av irritation, aggression och våld från de boende.I studie III studerades videoinspelad interaktion mellan 11 personer med utvecklingsstörning och 16 av deras vårdare. Verbal och icke-verbal interaktion identifierades. Fyra inspelade situationer valdes ut för att belysa framgångsrikt samspel. Resultatet visade att framgångsrikt samspel mellan personer med utvecklingsstörning och deras vårdare bland annat bygger på möjligheten att bekräfta varandra, dela vardagshändelser, ge tid och utrymme och på att använda ett kongruent och tydligt språk.I studie IV utvärderades effekterna av en web-baserad utbildningsintervention, vars syfte var att förbättra interaktionen mellan personer med utvecklingsstörning och vårdare samt att därmed reducera förekomsten av situationer med utmanande beteende. Resultatet visade att vårdarna hade förbättrat sin förmåga att hantera situationer med utmanande beteende och att förekomsten av utmanande beteende minskat. Vårdarna beskrev att den web-baserade utbildningen upplevts givande och möjlig att ta del av parallellt med arbetet.Slutsats: Fysiska begränsningsåtgärder förekommer i gruppbostäder för personer med utvecklingsstörning. Användningen av begränsningsåtgärder kan vara relaterade både till fysiska funktionsnedsättningar och till beteenden i samspelet mellan brukare och vårdare. Vårdare upplever användningen av fysiska begränsningsåtgärder svår och tröttande. Brott i kommunikationen mellan personer med utvecklingsstörning och deras vårdare kan leda till försvårad interaktion med risk för situationer med utmanande beteenden. När vårdare är framgångsrika i interaktionen med personer med utvecklingsstörning ger det tillfredsställelse både för de boende och vårdarna. Vårdarna upplever dock ofta hjälplöshet och osäkerhet i relation till hantering av situationer med utmanande beteende och efterfrågar utbildning. Web-baserad utbildning om interaktion med personer med utvecklingsstörning och utmanande beteende har i vår studie visat sig ge lovande effekter och bör vara möjlig att utveckla för både introduktion av nyanställda vårdare och för kompetensutveckling bland mer erfaren personal.
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| 4. |
- Bruce, Elisabeth, 1973-
(author)
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Erfarenheter av stöd bland föräldrar till barn med medfödda hjärtfel
- 2014
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Doctoral thesis (other academic/artistic)abstract
- Bakgrund. Antalet överlevande barn som diagnostiserats med medfött hjärtfel (CHD) har ökat markant de senaste 15 åren, vilket har bidragit till en växande grupp av barn och familjer som behöver specialiserat stöd, eftersom familjelivet påverkas och begränsas av CHD. Studier har visat att föräldrar till barn med CHD har en ökad risk för psykosocial sjuklighet i jämförelse med föräldrar till barn med andra sjukdomar eller föräldrar till friska barn. Få studier har belyst föräldrars erfarenheter av stöd när de har barn med CHD. Därför fokuseras denna avhandling på föräldrarnas perspektiv av fenomenet stöd, för att öka förståelsen för vad stöd innebär för föräldrar till barn med CHD.Syfte. Avhandlingens syfte är att belysa innebörder i den levda erfarenheten av stöd, hos föräldrar till barn med CHD samt att till svensk kontext anpassa och validera ett familjecentrerat instrument för föräldrars skattning av stöd till hela familjen från sjuksköterskor.Metoder. Avhandling består av fyra delstudier. I tre av dessa (I, II, III) genomfördes datainsamlingen genom narrativa intervjuer, som tolkades genom fenomenologisk hermeneutisk tolkningsmetod. I den fjärde delstudien gjordes en översättning och psykometrisk testning av det isländska instrumentet ICE-FPSQ till svensk kontext. Dessutom beskrevs föräldrars skattning av uppfattat stöd från sjuksköterskor till familjer som har barn med CHD.Resultat. Fynden från delstudie I visade att innebörder i den levda erfarenheten av stöd hos föräldrar till tonåringar med CHD var stöd för att själva kunna vara stödjande för sin familj, men också för andra personer i tonåringens omgivning. Delstudie II visade att innebörder i den levda erfarenheten av stöd för mödrar till yngre barn med CHD var att få stöd så att de själva kunde hantera sin egen oro och sitt familjeliv. Delstudie III visade att innebörder i den levda erfarenheten av stöd för fäder till yngre barn med CHD var önskan att få stöd genom delande relationer med familjen och att bli involverad i vården av sitt barn. Den fjärde delstudien (IV) visade att den svenska versionen av instrumentet ICE-FPSQ var valid och reliabel i svensk kontext. Föräldrarnas skattningar av uppfattat familjecentrerat stöd till familjen från sjuksköterskor visade sig vara lågt.Slutsats. En övergripande slutsats från de tre första delstudierna pekar mot att innebörder i stöd för föräldrarna är stöd genom att ha goda, interaktiva relationer med vårdpersonalen, bli mött som en hel familj med unika och individuella behov samt inkluderade i vårdprocessen för att kunna stödja varandra inom familjen. Dessa fynd pekar mot familjecentrerad pediatrisk omvårdnad som sannolikt är lämplig för att, på ett mångfacetterat sätt, möta varje familjs behov av att bli bemött som en unik helhet. Det Isländska instrumentet ICE-FPSQ är designad utifrån teorin om familjecentrerad omvårdnad. I delstudie IV visade resultaten på acceptabla psykometriska egenskaper för den svenska versionen av instrumentet. Fynden visade även att föräldrarna inte skattade höga nivåer av familjecentrerat stöd från sjuksköterskor.
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| 5. |
- Brännström, Margareta, 1957-
(author)
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Ett liv i berg och dalbana : innebörder av att leva med svår kronisk hjärtsvikt i palliativ avancerad hemsjukvård utifrån patienters, närståendes och sjuksköterskors berättelser
- 2007
-
Doctoral thesis (other academic/artistic)abstract
- The overall purpose of this thesis is to illuminate meanings of living with severe chronic heart failure (CHF) in palliative advanced home care (PAHC) as disclosed through patients’, close relatives’ and nurses’ narratives. This thesis comprises four papers that illuminate the phenomenon from various perspectives and with different focus. In paper I four patients with severe CHF in PAHC were interviewed. In paper II three of their close relatives were interviewed. In paper III one man and his wife in PAHC were interviewed at 3-5 month intervals over a 4.5-years period. In paper IV 11 nurses in PAHC were interviewed. In all papers narrative interviews were conducted and the text was interpreted using a phenomenological-hermeneutic method. The result shows that meanings of living with severe CHF in PAHC is to be ‘knocking on death’s door’ yet surviving. This means never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable, interwoven symptoms. The course of the illness forces sufferer to ride a symbolical ‘roller coaster’, an ongoing oscillation between ‘ups and downs’. Being offered a safety belt in the ‘roller coaster’ by the PAHC team means feelings of safety (I). Meanings of being a close relative of a person with severe CHF in PAHC is to be following the life- threatening ups and downs that the ill person goes through. It is like being a fellow passenger on the ‘roller coaster’ ride that is their loved one’s disease, with burdensome responsibility for easing the ‘downs’ and supporting the ‘ups’. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team (II). Meanings of living the ‘ups and downs’ over time is being captive in a roller-coaster ride, side by side, with the ‘ups and downs’ caused by the illness. Living close to death is inescapable when recurrent periods of deepest ‘downs’ force one to face that one’s life together is coming to an end. The relationship between the spouses is severely tested but seems to withstand the strain and meaning is found in togetherness in life. Sharing the safety belt on the ‘roller coaster’, offered by the PAHC team, evokes feelings of security. However, the safety belt is adjusted to the man with severe CHF leaving the wife partly without comfort and at times uncertain, especially in the deepest ‘downs’ (III). Meanings of being a palliative nurse for patients with severe CHF in PAHC is being firmly rooted and guided by the values of palliative culture. Being a facilitator for the patient with CHF to live his/her everydaylife in the best way possible is difficult, challenging but overall positive. The nurses get into a tight corner when palliative culture values clash and do not correspond to nurses’ interpretation of what is good for the patient with severe CHF. There is a limit to nurses’ pliability to patients’ and close relatives’ will, as they are strongly convinced that resuscitation is not an option. Nurses have already made up their mind about that they do not perform heart- lung resuscitation (IV). The comprehensive understanding is that meanings of living with severe CHF in PAHC is being captive in a ‘roller-coaster’ life with varying periods between unpredictable improvement and deterioration of the body, for the rest of life. Living with the unpredictable, deteriorated body means to oscillate between enduring the suffering in ‘downs’ and enjoying life in ‘ups’ (I-III). Living with death so close over and over again i.e. being in a limit situation evokes feelings of uncertainty (I-IV) and confidence (I-III). Being positive dependent on PAHC facilitates a life as normal as possible in togetherness at home (I-IV). The comprehensive understanding of the four papers (I-IV) are discussed in the light of a theoretical framework from the German psychiatrist and philosopher Karl Jaspers thoughts about limit situation, the Danish philosopher K.E Lögstrup thoughts about the ethical demand, palliative theories and relevant empirical studies.
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| 6. |
- Daerga, Laila, 1965-
(author)
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Att leva i två världar : hälsoaspekter bland renskötande samer
- 2017
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Doctoral thesis (other academic/artistic)abstract
- Introduction: There is a gap of knowledge of the health situation among the reindeer herding Sami in Sweden. The Swedish government has also got criticism for not taking responsibility for the Sami health. The aim of this thesis was to get more knowledge to understand the health situation of the reindeer herding Sami in Sweden. Furthermore, gender specific risk factors in the working environment among reindeer herders and their perception of healthcare and social services were investigated.Method: Cross–sectional questionnaires covering different aspects of health such as musculoskeletal disorders, trust for different healthcare providers and work related psychosocial factors was distributed to reindeer herding Sami and non-Sami populations. Interviews with nine reindeer herding Sami about trust in healthcare and social services were carried out and analyzed with thematic analysis. Sixteen discussion meetings with 80 reindeer herders focusing on psychosocial perspectives of working conditions in Sami communities were performed.Result: The prevalence of musculoskeletal symptoms from elbow, hand/wrist and lower back from male reindeer herders were higher compared to blue-collar worker. Psychosocial risk factors for health were identified such as high workload on a few herders, difficulties to get relief and support as well as to get appreciation in work and lack of participation in decisionmaking among women were common in the organization of reindeer husbandry. The trust in healthcare and social services was lower among reindeer herding Sami compared to non-Sami majority population. A hypothesis is that healthcare professionals do not know that the "Reindeer cloud" (metaphor to iCloud) affects all parts in the reindeer herders life. The distrust are influenced by historically traumas, reindeer herding Sami experiences from healthcare professionals and healthcare organization and culturally generated norms.Conclusio: The thesis hypothesized that health disorders, attitude towards healthcare and psychosocial environment are important aspects when trying to understand the health situation among the reindeer herding Sami. There is a need to introduce long-term public health work for all Sami people, to establish ethical guidelines for Sami health research and develop healthcare services that provides access to healthcare for the reindeer herding Sami, on equal terms.
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| 7. |
- Dahlqvist, Vera, 1954-
(author)
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Samvete i vården : att möta det moraliska ansvarets röster
- 2008
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Doctoral thesis (other academic/artistic)abstract
- The overall aim of this thesis is twofold: first, to develop and validate questionnaires that could be used for investigating relationships between perceptions of conscience, moral sensitivity and burnout and second, to describe patterns of self-comfort used to ease stress and illuminate meanings of living with a troubled conscience. The thesis comprises five studies and is based on both quantitative and qualitative data.In study I, a questionnaire was constructed to assess perceptions of conscience; the Perceptions of Conscience Questionnaire (PCQ). This 15 item-questionnaire was distributed to 444 care providers. Statistical analyses of responses showed sufficient distribution and a stable six factor solution congruent with reviewed literature. The six factors were labelled: ‘the voice of authority’, ‘warning signal’, ‘demanding sensitivity’, ‘asset’, ‘burden’ and ‘depending on culture’. The findings suggest that the PCQ is a valid questionnaire. The aim of study II was further development of an existing questionnaire assessing care providers’ moral sensitivity, enabling its use in various care contexts. The revised nine-item questionnaire, the Moral Sensitivity Questionnaire Revised version (MSQ-R), was distributed to 278 care providers with various professional backgrounds. Statistical analyses of responses showed sufficient distribution and a three-factor solution congruent with reviewed literature. The three factors were labelled: ‘sense of moral burden’, ‘sense of moral strength,’ and ‘sense of moral responsibility.’ The findings suggest that MSQ-R is valid for use in various healthcare contexts. In study III, the PCQ, the MSQ-R and the Maslach Burnout Inventory (MBI) were distributed to a population of psychiatric care providers (n=101) to investigate relationships between perceptions of conscience and moral sensitivity and levels of burnout. The hierarchical cluster analysis shows two clusters with Pearson’s r >.50. Cluster A comprising items such as: being sensitive, interpreting and following the voice of conscience that warns us against hurting other or ourselves and developing as human beings was labelled ‘experiencing a sense of moral integrity’. Cluster B comprising items such as: feeling inadequate, doing more than one has strengths for, feeling always responsible, having difficulties to deal with wearing feelings, perceiving that conscience gives wrong signals and express social values, having to deaden one’ conscience, were all related to scores of the MBI subscales emotional exhaustion (EE) and depersonalisation (DP). Cluster B was labelled ‘experiencing a burdening accountability’. The results show that levels of ‘experiencing a burdening accountability’ are closely related to levels of being at risk of burnout.The aim of study IV was to describe patterns of self-comforting measures used to ease stress. The written accounts of 168 care providers and healthcare students were analysed by means of qualitative content analysis. The findings disclose two dimensions: an ability to use early learned measures to take care of oneself (ingression) and an ability to feel intimately related to life, other human beings and universe or God (transcendence). The findings provide valuable knowledge about self-comfort as a coping strategy. The aim of study V was to illuminate meanings of living with a troubled conscience. Ten psychiatric care providers, respondents of study III with various perceptions of conscience were interviewed. The interviews were interpreted using a phenomenological - hermeneutical method. The findings show that one meaning of living with a troubled conscience is being confronted with inadequacy and struggling to view oneself as ‘good enough.’ The comprehensive understanding indicates that inadequacy, both one’s own and that of organization one represents, infuse feelings of shame rather than feelings of guilt. Shame concerns one’s identity and need of reconciliation.Conclusions: The results reveal two ways of encountering a troubled conscience. One is being unable to interpret the ethical demand from a troubled conscience. This is indicated by connections between levels of moral burden and levels of burnout. The other way is being able to interpret the ethical demand and using one’s troubled conscience to develop practical wisdom. This means facing shame of feeling inadequate, reconciling images of the ideal self and self-contempt, and becoming realistic about what one can do. In this process comfort seems to be a mediator of reconciliation.
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| 8. |
- Dalheim-Englund, Ann-Charlotte
(author)
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Skydda och frigöra : en studie av föräldrar till barn med astma och av professionella vårdare
- 2005
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Doctoral thesis (other academic/artistic)abstract
- Aim: The overall aim of this thesis is, from the point of view of parents of a child with asthma, to describe meanings of being a parent, parents’ quality of life, and to describe how family relations are influenced by their child’s disease. The aim is also to increase the understanding of what strategies professional caregivers use in their work with teenagers suffering from asthma. Methods: Informants in the three qualitative studies were 29 parents (17 mothers and 12 fathers) of children with asthma and 7 professional caregivers. Informants in a quantitative quality of life study were 371 parents. The data collections were undertaken by means of interviews, observations and a questionnaire. The data was analysed by means of a phenomenological-hermeneutic method, grounded theory and statistics. Results: A meaning of being a parent of a child with asthma is to live a strenuous life and to fear that the child might die during a severe asthma attack. The parents’ actions involve both protecting and liberating and their feelings involve sadness as well as acceptance. Mostly the mothers act in a protecting manner and express feelings of sadness. The fathers mostly act in a liberating manner and express feelings of acceptance. The core concern in families of a child with asthma was found to be disease-engendered uncertainty. The mothers describe that feelings of uncertainty always are present owing to the unpredictability of the disease. These feelings make the mothers more or less available for family members. For the child with asthma the mothers’ experience that they are always available. Thus, control and tight bonds characterize the mother-child relationships. The mothers’ constant availability for the child with asthma is experienced to lead to a decreased availability for other family members and theses relationships are characterised by feelings of forsakenness and lack of understanding. However, when parents of children with asthma estimate their quality of life by a questionnaire, they estimate it as comparatively high. In the same family the parents scoring of separate items was to a large extent similar. The result also shows that professional caregivers’ central concern is to assist teenagers with asthma to conquer life. This gives rise to five strategies: showing respect, being at hand, promoting personal sense of responsibility, promoting exceeding boundaries, and promoting reflections. In professional caregivers’ attempt to assist teenagers to conquer life some differences are seen in the way they support boys and girls. Conclusion: One conclusion drawn from this thesis is that being a parent of a child with asthma involves feelings of uncertainty. In meeting the parents in question, caregivers should reflect upon these feelings and consider how the parents could be assisted. As mothers and fathers describe different attitudes in relation to the care of the child, it is also important to reflect upon how professional caregivers can assist the balance between the mothers’ protecting and the fathers’ liberating attitudes. It is also important for professional caregivers to reflect upon how they meet teenage girls and boys with asthma respectively, and to take their needs and understanding of the situation into consideration.
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- Danielsson, Ulla EB, 1947-
(author)
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Träffad av blixten eller långsam kvävning : genuskodade uttryck för depression i en primärvårdskontext
- 2010
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Doctoral thesis (other academic/artistic)abstract
- Depression is a common mental health problem in primary health care. One third of the Swedish population is expected to experience depression at some point in their lives. The understanding of depression has expanded, both from a lay and primary health care perspective. The number of persons considering themselves as depressed, receiving the diagnosis, and getting treatment for it has increased steadily over the last decades. Unchanged, however, is that depression is diagnosed twice as often in women as in men, while twice as many men as women commit suicide. These gender differences appear in adolescence. In earlier research biomedical, psychological, and social-cultural explanations of gender differences have been discussed. Patient’s own perspectives have more seldom stood in focus, and men’s narratives in particular are still scarce. In this thesis, gender, i.e. how to be a woman or a man, is considered as a construct, formed and negotiated in social interaction. The aim of the study is to explore the gendered face of depression from a patient perspective: How is depression expressed and explained by patients in primary health care, by women and men, adults and adolescents? How are depressed women and men portrayed in the media? How do patient and media accounts of depression compare with the perspective offered in medical research articles? Method and material The analyses are based on data from three different sources: patient narratives, newspaper portrayals and scientific medical articles. – 37 in-depth interviews were undertaken with primary health care patients diagnosed with depression. Informants were chosen to include both men and women, grown-ups (Studies I + II) and young adults (Study V) of varying occupational and social class backgrounds. Data were analyzed according to grounded theory. – 26 articles portraying lay informants with depression (Study III) were drawn from three major Swedish daily newspapers by a search of database Mediearkivet 2002. The articles were analyzed by qualitative content analysis. –82 scientific articles concerning depression in relation to gender were identified in a PubMed search 2002. The understanding of depression in these articles was explored and compared with findings in the grown-up patient narratives and in the media portrayals by means of discourse analysis (Study IV). Findings Study I captured women’s and men’s formulations of their experiences of depression. To be marked with demands constituted a central experience for both women and men, but the outward manifestations differed in relation to gender as well as to class. Home and work had different priority. Men talked more about physical distress (often chest pain) than about emotions. Women readily verbalized emotional distress – shame and guilt – while physical symptoms were vague and secondary (often about the stomach). Men dealt with insecurity by aggrandizing their previous competence, women by self-effacement. Study II disclosed gendered trajectories into depression. Four symbolic illness narratives were identified: struck by lightning, nagging darkness, blackout and slowly suffocating. Most of the men considered their bodies suddenly “struck” by external circumstances beyond their control. The stories of women in the study were more diverse, reflecting all four illness narratives. However, the women had a tendency to blame their own personality and to describe depression as insidious and originating from the inside. The women expressed feelings of guilt and shame but also conveyed a personal responsibility and concern with relationships. Study III identified four themes in media portrayals of depression: displaying a successful facade, experiencing a cracking facade, losing and regaining control and explaining the illness. The mediated image of depression both upheld and challenged traditional gender stereotypes. The women’s stories were more detailed, relational, emotionally oriented and embodied. The portrayal of men was less emotional and expressive, and described a more dramatic onset of depression. Study IV revealed gaps in how depression in relation to gender is understood by the patients, the media, and the medical research establishment. There were differences in recognition, in understanding of the reasons, and in contextualization of depression. Although women and men described different symptoms and reasons for falling ill, in scientific articles these gendered differences were conceptualized mainly in terms of hormones and other biological markers. Study V elucidated the impact of gender on adolescent depression. The young women and men were all striving to be normal, influenced by demanding media images, confronted by identity trouble, and overwhelmed by feelings. They had dreams of an ordinary family and described normative expectations. Getting a safety net of friends and other adults was a way out. Both the young women and men were eager to communicate their distress when given the opportunity. This seemed especially important to some of the young men, who in talking about their emotional problems transgressed gender norms. Conclusions Patient perspectives enrich the understanding of gendered expressions of depression by making visible transgressions of and breaks with stereotype gender norms. Gender awareness is an important key in clinical consultation. To recognize gendered narratives of illness might have a salutary potential, making depression more visible among men, and relieving self-blame among women. By re-evaluating restrictive gender patterns, the clinician might encourage development of healthier practices of how to be a man or a woman, a development especially important for adolescents. An integrated model for understanding biological, gender and cultural aspects of depression has yet to be developed. As general practitioners we have a unique possibility to see and to study the whole individual in her social and cultural context.
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- Dorell, Åsa, 1974-
(author)
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Tröst genom hälsostödjande familjesamtal : upplevelser och effekter av en familjecentrerad intervention
- 2016
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Doctoral thesis (other academic/artistic)abstract
- Aim: The overall aim of this thesis was to evaluate the experiences of nurses and families participated in Family Health Conversations (FamHC) and the effects of this intervention on those families with a family member living in a residential home for older people. Methods: This thesis comprises four studies. The FamHC were structured as three conversations held at two-week intervals and a closing letter. In two of the studies (I and II), group interviews with family members were interpreted using qualitative content analysis. A mixed-method research design was used in study three (III). Data were collected through group interviews with families and by using the instruments FHI and SWED-QUAL completed by the family members. The qualitative and quantitative data were analyzed and then integrated. In the fourth study (IV), registered nurses who had performed the FamHC participated in individual interviews after they had completed four conversation series each. The RNs also wrote diary notes about what they experienced directly after conducting each conversation. The interviews and diary notes were interpreted with qualitative content analyses. Result: The findings from study I one month after participating in the conversations showed that the families felt alleviated from guilty consciences. The FamHC gave the family members confirmation that they were, indeed, good enough. Study II showed that, six months after participating in the conversations, the families had experienced the FamHC as healing because the sharing and reflections through dialogue within the conversations mediated confirmation, which made the families feel consoled. Study III revealed that the families’ emotional wellbeing had increased six months after participating in the FamHC. The families also showed an improved ability to work together. In study IV, the nurses reported that the FamHC was a useful care action in their work with families. Conclusion: The overall conclusion from the findings is that the families were consoled by participating in the FamHC. The conversations offered an arena for families to listen to each other’s narration which provided a better relationship and cooperation within the family and a greater sense of well-being for the family members.
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