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Magistrsko delo predstavlja primer individualiziranega pristopa z likovno dejavnostjo pri osebi z demenco. V teoretičnem delu smo opisali bolezensko stanje demence in predstavili pomoč z likovno dejavnostjo. V empiričnem delu smo uporabili kvalitativni pristop in deskriptivno metodo raziskovanja, ki je vključevala eno osebo z demenco, staro 85 let, z namenom proučevanja vpliva likovnih dejavnosti na krepitev dobrega počutja omenjene osebe. Podatke smo zbirali z intervjuji raziskovane osebe, njenega svojca in negovalnega osebja z opazovanjem z udeležbo in izpolnjevanjem opazovalnih obrazcev z izpolnjevanjem lestvic za merjenje kakovosti življenja osebe z demenco in s pisanjem raziskovalnega dnevnika. Vse to z namenom odgovoriti na vnaprej zastavljena raziskovalna vprašanja. Pomoč z umetnostjo je nefarmakološki način zdravljenja neprijetnih simptomov pri osebah z demenco, ki sicer daje dobre rezultate, a še ni dovolj raziskan. Po pregledu rezultatov raziskave lahko povzamemo, da smo z likovno dejavnostjo pri osebi z demenco vplivali na njeno čustvovanje in vedenje ter s tem izboljšali njeno kakovost življenja. The master's thesis presents an example of an individualized approach with an art activity for a person with dementia. In the theoretical part, we described the medical condition of dementia and presented help with art activities. In the empirical work, we used a qualitative approach and a descriptive research method, which included one person with dementia, aged 85, to study the impact of art activities on strengthening the well-being of the beforementioned person. Data were collected through interviews of the researched person, their relative, and nursing staff by observing with participation and filling in observation forms by completing scales to measure the quality of life of a person with dementia and by writing a research diary. All this was to answer the research questions posed in advance. Helping with art is a non-pharmacological way of treating unpleasant symptoms in people with dementia, which, although it gives good results, is not yet sufficiently researched. After reviewing the research results, we can summarize that with the art activity of a person with dementia, we influenced their emotions and behaviour and thus improved their quality of life.

Uvod: Sindrom policističnih jajčnikov je najpogostejša endokrino-presnovna motnja pri ženskah v rodni dobi, ki se pojavi pri 8-13 % žensk. Vpliva na fizično in duševno zdravje ter na kakovost življenja od pojava simptomov do menopavze. Namen: Namen diplomskega dela je predstaviti, kako sindrom policističnih jajčnikov vpliva na kakovost življenja žensk. Metode dela: V diplomskem delu smo uporabili deskriptivno metodo dela, s pregledom domače in tuje literature. Pregled literature je izveden s pomočjo spletnega portala DikUL (Digitalna knjižnica Univerze v Ljubljani), v podatkovnih bazah MEDLINE (PubMed), ScienceDirect in CINAHL ter Google Scholar, v obdobju od decembra 2022 do aprila 2023. Literaturo smo iskali v angleškem in slovenskem jeziku s ključnimi besedami, in sicer: polycystic ovary syndrome/sindrom policističnih jajčnikov, polycystic ovary syndrome AND quality of life/sindrom policističnih jajčnikov IN kakovost življenja, polycystic ovary syndrome AND nursing/sindrom policističnih jajčnikov IN zdravstvena nega. Rezultati: V podrobnejšo analizo smo vključili 14 člankov. Rezultati kažejo, da imajo ženske s sindromom policističnih jajčnikov na splošno precej nizek rezultat pri kakovosti življenja. Na kakovost življenja je imel največji vpliv hirzutizem, sledi mu povišana telesna masa, depresija, neplodnost, menstrualne motnje in akne. Medicinska sestra ima pomembno vlogo v procesu diagnostike in zdravljenja, saj izvajanje intervencij zdravstvene nege vključuje zdravstveno-vzgojno delo za preprečevanje zapletov, svetovanje za zdrav življenjski slog, spodbujanje in nudenje psihološke podpore. Razprava in zaključek: Sindrom policističnih jajčnikov močno vpliva na kakovost življenja žensk. Težave s hirzutizmom in telesno maso lahko povzročijo, da se ženske počutijo manj ženstvene. Vse skupaj lahko privede do stresa, kar privede do poslabšanja ovulacije in znakov sindroma. Prav tako jim neplodnost povzroči dodatno skrb, saj doživljajo pritisk družbe, da morajo imeti otroke. Ženske s sindromom policističnih jajčnikov se pritožujejo, da prejemajo pomanjkljive informacije o poteku bolezni, o posledicah in zdravljenju. Medicinska sestra ima zato izredno pomembno nalogo pri ozaveščanju o preventivi in krepitvi zdravja. Introduction: Polycystic ovary syndrome is the most common endocrine-metabolic disorder in women of reproductive age, occurring in 8-13 % of women. It affects physical health, mental health, and quality of life, from the onset of symptoms to menopause. Purpose: The aim of this diploma work is to present how polycystic ovary syndrome affects the quality of life of women. Methods: In the thesis, we used a descriptive method of work, with a review of domestic and foreign literature. The literature review was carried out in the online portal DikUL (Digital Library of the University of Ljubljana), in the databases MEDLINE (PubMed), ScienceDirect and CINAHL, and Google Scholar, in the period from December 2022 to April 2023. We searched for literature in English and Slovenian, using the following keywords: polycystic ovary syndrome/sindrom policističnih jajčnikov, polycystic ovary syndrome AND quality of life/sindrom policističnih jajčnikov IN kakovost življenja, polycystic ovary syndrome AND nursing/sindrom policističnih jajčnikov IN zdravstvena nega. Results: 14 articles were included in the detailed analysis. The results show that women with polycystic ovary syndrome generally have a rather low quality of life score. Hirsutism has the greatest impact on quality of life, followed by weight, depression, infertility, menstrual disorders, and acne. The nurse plays significant role in the process of diagnosis and treatment, as the implementation of nursing interventions includes health-educational work, prevention of complications, counseling of a healthy lifestyle, encouraging and offering psychological support. Discussion and conclusion: Polycystic ovary syndrome have a major impact on women’s quality of life. Problems with hirsutism and weight can make women feel less feminine. All together can lead to stress, which leads to deterioration of ovulation and worsening of the symptoms of the syndrome. Infertility also causes them additional worry, as they receive pressure from society to have children. Women with polycystic ovary syndrome also complain that they receive too little information about course of the disease, its consequences and treatment. The nurse has an extremely significant role to play in raising awareness about prevention and health promotion.

V magistrskem delu se dotaknem obdobja, ki je za večino ljudi pomenilo veliko sprememb, prilagajanja in drugačnega načina življenja. V uvodnem delu pišem o epidemiji virusa SARS-CoV-2, o kriznih situacijah in sposobnostih prilagajanja človeka na le-te ter vplivu covida-19 na življenje, duševno in fizično stanje oz. na kakovost življenja nasploh. V nadaljevanju naloge pišem o socialnem delu in smernicah, s katerimi bi lahko čim bolj kompleksno in učinkovito pristopili v podobnih situacijah ter o pomenu povezovanja socialnega dela z drugimi strokami. V raziskavi me predvsem zanima, kako je potekalo socialno delo na področju varstva otrok, mladostnikov, družine in odraslih v okviru CSD Koroška, kakšne so bile ovire, s katerimi so se srečevali uporabniki, koliko so se spremenili pogoji za življenje uporabnikov, s kakšnimi ovirami so se srečevali zaposleni, kako se je njihovo delo spremenilo v času izrednih razmer. Zanimalo me je tudi, kaj je zaposlenim pomagalo pri izvajanju njihovih nalog, kje in na kakšen način menijo, da bi potrebovali pomoč države in drugih institucij za boljše pogoje in izvajanje storitev ter kaj bi bilo potrebno spremeniti, da bi v podobnih situacijah lahko delali še bolje. Kot ključno ugotovitev lahko navedem, da se delovne naloge niso spremenile, spremenil pa se je način, kako so se izvajale. Potrebno je bilo veliko prilagajanj hitro spreminjajočim se ukrepom zaposleni so bili pogosto v dilemi glede postopanja, ko so se soočali z nujnimi situacijami, ko je šlo za nasilje ali drugo ogroženost ljudi. Čeprav so se trudili navezovati stike z drugimi organizacijami, so bile nekatere določen čas zaprte, kar je onemogočilo nujnost po namestitvi oz. drugi storitvi. Kadar je bilo mogoče, so uporabnikom omogočali osebni stik, toda veliko je bilo odvisno od izkušenj zaposlenega, iznajdljivosti, prilagodljivosti. Na CSD Koroška so se trudili, da bi vsi, ki so pomoč potrebovali, le-to tudi dobili. Udeleženi v raziskavi niso opazili povečanega obsega dela, vendar so se pa po njihovem mnenju nekatere stiske ljudi poglobile zaradi omejitev in ukrepov, ki so bili določeni (težave na področju osebnih odnosov, finančne težave, izobraževanje). Za zaposlene so bile pri izvajanju dela ključna tudi pomoč in podpora sodelavcev in vodstva ter možnost sodelovanja z drugimi. In my master's thesis, I focus on a period that meant a lot of changes, adaptation, and a different way of life for most people. In the beginning, I focus on the COVID-19 pandemic, crisis situations and human adaptation capability, and the impact of COVID-19 on life, mental and physical states, or the quality of life in general. Further, I focus on social work and on guidelines that could be used to approach similar situations in the most complex and effective way and the importance of connecting social work with other professions. In my research, I am mainly interested in how social work in the field of child care, adolescents, family, and adults was carried out in the Social Work Centre Koroška, what the obstacles the service users encountered were, how much the conditions of service users' lives have changed, what the obstacles the employees encountered were, how their work has changed during the extraordinary conditions. I was also interested in what helped the employees in carrying out their tasks, where and in what way they would need the help of the state and other institutions for better conditions, and what would need to be changed to be able to work even better in similar situations. As a key finding, I can state that the work tasks have not changed significantly. However, the way they were performed has changed. I found out that many adaptations to rapidly changing measures were necessary and that employees were often in a dilemma about what to do when faced with emergencies involving violence or other threats. Although they tried to establish contacts with other organizations, some of them were closed for a certain period of time, which made it impossible to accommodate people urgently. Whenever possible, service users could meet in person with employees but a lot depended on the employee's experience, ingenuity, and flexibility. In the Social Work Centre Koroška, they tried to ensure that everyone who sought help got it. The participants in the research did not notice an increased amount of work. In their opinion, however, some of the distresses deepened due to the measures that were set (problems in personal relationships, finances, and education). Help and support from colleagues and management, as well as the possibility of cooperation with others, were also crucial for the employees in carrying out their work.

Udejstvovanje v invalidskem športu daje osebam, vezanim na invalidski voziček, priložnost za pozitivne izkušnje in izboljšanje spretnosti, potrebnih za izvajanje vsakodnevnih dejavnosti, kar prispeva k višji kakovosti njihovega življenja. Z raziskavo smo želeli proučiti igranje rokometa na invalidskih vozičkih z vidika modela človekove okupacije. Uporabljen je bil kvalitativni raziskovalni pristop. V raziskavi so sodelovale tri osebe s poškodbo hrbtenjače, ki igrajo rokomet na invalidskem vozičku. Podatke smo zbrali z delno strukturiranim intervjujem in jih analizirali s kvalitativno vsebinsko analizo. Rezultati so predstavljeni v sklopu štirih kategorij: volja, vzorci izvajanja, zmogljivost za izvajanje in vpliv okolja na okupacijsko vedenje. Raziskava je pokazala, kako pomemben je šport v življenju ljudi, ki so vezani na invalidski voziček. Vključeni so izpostavili tudi nekaj težav, ki izhajajo predvsem iz okolja. Pri vključevanju oseb z omejitvami v invalidski šport in pri odpravljanju v raziskavi ugotovljenih težav sodelujejo tudi delovni terapevti, ki imajo potrebno znanje in instrumente za kakovostno obravnavo športnikov z omejitvami. Participation in sports provides wheel-chair users with the opportunity to gain positive experiences and improves the skills needed to perform every-day activities, which contributes to a higher quality of life. The aim of our study was to research the wheelchair handball game from the perspective of the Model of Human Occupation. A qualitative approach was used. Three persons with spinal cord injury, who play wheelchair handball, participated in the study. Data were collected using semi-structured interviews and were analysed with a qualitative content analysis. The results were presented in four categories: volition, habituation, performance capacity and the impact of the environment on occupational behaviour. Our study showed how important sport is in the lives of people who are bo-und to the wheelchair. The participants also pointed out some problems that arise mainly from the environment. Occupational therapists are involved in the inclusion of persons with disabilities in disability sports and in the elimination of problems identified in the research. They have the necessary knowledge and tools for the quality treatment of athletes with disabilities.

Background: It is widely recognized that technologies have the potential to contribute to high-quality long-term care for older people at home. Evidence from past RCTs partly confirms the positive effects of technology use, although results are mixed and various questions remain unanswered. Objective: This study aimed to demonstrate the beneficial mid- and long-term effects of using aging-in-place technologies on quality of life (QoL) indicators like perceived safety, control, and participation (ATQoL scale) and other specific psychosocial outcomes (PI-ADS) as well as general health-related QoL (EQ-5D-5L Index value and Health today). Method: We conducted an RCT with 281 older people in Austria, Italy, the Netherlands, and Slovenia. Persons in the intervention group (n=143) obtained a bundle of smart home and assistive technologies which they used for 6 or 13 months in their private homes. Persons in the control group (n=138) received no intervention. Three hypotheses were tested with Generalized Linear Mixed Models. Results: We found slightly positive impacts of technology use on some of the specific QoL indicators for persons who used the technologies for 13 months and were relatively motivated and healthy. No, or even detrimental, effects emerged after 6 months. However, persons who used the emergency watch frequently perceived more favorable outcomes than those who used it rarely. Effects had small to medium standardized effect sizes. No effects emerged for the general health-related QoL measure. Conclusion: Despite study limitations (and the COVID-19 pandemic) we conclude that aging-in-place technologies can mitigate adverse age-related developments, and have stabilizing effects on the QoL of older persons. Our trial showed that outcome indicators that are closely related to technology use should be preferred to general indicators. Findings now have to be consolidated in meta-analyses to paint a clearer picture of the beneficial effects of technology use.

IZVLEČEK Uvod: Predmenstrualna disforična motnja je motnja na področju duševnega zdravja, ki prizadene približno 2–8 % žensk v reproduktivni dobi. Je zelo huda oblika predmenstrualnega sindroma in zelo negativno vpliva na kakovost življenja žensk. Namen: Namen diplomskega dela je pridobiti vpogled v problematiko, s katero se soočajo ženske, ki imajo predmenstrualno disforično motnjo. Ugotoviti želimo, kako ta motnja vpliva na psihično počutje, in poudariti pomen vključevanja medicinskih sester. Metode dela: V diplomskem delu smo uporabili deskriptivno metodo dela s pregledom znanstvene in strokovne literature v slovenskem in angleškem jeziku na temo disforične motnje pri ženskah. Iskanje in pregled literature je potekalo od decembra 2021 do novembra 2022 s pomočjo oddaljenega dostopa v podatkovnih bazah knjižnice Zdravstvene fakultete Univerze v Ljubljani. Pri pregledu literature smo upoštevali naslednja merila: jezik, v katerem je članek napisan, strokovnost članka, prosta dostopnost do celotnega besedila, objave po letu 2000. Izključitveni kriteriji za uporabo literature so bili: vsebinsko neskladje literature z obravnavano temo, dvojniki in literatura, ki je objavljena pred letom 2000. Rezultati: Ženske, ki se borijo s predmenstrualno disforično motnjo, se spopadajo z uravnavanjem svojih čustev. Predvsem se soočajo z vedenjsko impulzivnostjo, oslabljeno socialno povezanostjo in s povečanim zaznanim stresom. Predmenstrualna disforična motnja je zelo močan dejavnik tveganja za samomorilnost. Povečuje tudi verjetnost poskusa samomora in misli o poskusu samomora za skoraj sedemkrat oziroma štirikrat. Razprava in zaključek: Predmenstrualna disforična motnja je resna motnja, ki se ne bi smela zanemarjati. Posameznice s to motnjo se srečujejo z ovirami, ki motijo njihov vsakdanjik. Pojavljajo se težave v službi, v partnerskih odnosih in drugje. Ženske nimajo dovolj podpore, motnja je velikokrat prezrta in se žal ne jemlje resno, hkrati je tudi slabo poznana. Izobraževanje medicinskih sester bi bistveno pripomoglo k temu, da bi se to stanje jemalo resno. Le tako bi se lahko pomagalo prizadetim ženskam. ABSTRACT Introduction: Premenstrual dysphoric disorder is a mental health disorder that affects approximately 2-8% of women of reproductive age. It is a very severe form of premenstrual syndrome, and has a very negative effect on the quality of life of women. Purpose: The purpose of the thesis is to gain insight into the problems faced by women who have premenstrual dysphoric disorder. We want to find out how that disorder affects psychological well-being and emphasize the importance of involving nurses. Methods: In the diploma thesis, we used a descriptive research method with a review of scientific and professional literature in Slovenian and English on the topic of dysphoric disorder in women. The literature search and review took place from December 2021 to November 2022 using remote access in the library database of the Faculty of Health science in Ljubljana. When reviewing the literature, we took into account the following criteria: the language in which the article was written, the expertise of the article, free access to the entire text, publications after 2000. Exclusion criteria for the use of literature were: content discrepancy of the literature with the topic under discussion, duplicates and literature that was published before 2000. Results: Women struggling with premenstrual dysphoric disorder struggle with regulating their emotions. In particular, they face behavioral impulsivity, weakened social cohesion and increased perceived stress. Prementrual dysphoric disorder is a very strong risk factor for suicide. This disorder remained the likelihood of suicide attempt and suicidal ideation by almost seven times or four times. Discussion and conclusion: Premenstrual dysphoric disorder is a serious disorder that should not be ignored. Individuals with that disorder face obstacles that disrupt their daily lives. Problems arise at work, in partner relationships and more. Women do not have enough support, the disorder is often ignored and unfortunately not taken seriously, and at the same time it is also poorly known. The education of nurses would significantly contribute to the fact that this condition is taken seriously and only in this way the affected women can be helped.

A poor person–environment fit may bring various negative effects to older people’s independence and physical and psychological well-being. The presented study is especially valuable as it explores the challenges of living in cities in a country located in central and eastern Europe; namely, a less researched area when it comes to the quality of life of older people dwelling in an urban environment. The research questions that were explored are (1) what environmental pressures have people identified in the urban environment in Slovenia; and (2) what strategies have they used to deal with them? The study is based on 22 interviews with older people and three focus groups, that were then analysed using a thematic analysis approach. The study results identify a number of environmental pressures, which were divided into structural housing pressures, structural neighbourhood pressures, and formal and informal pressures. The analysis shows important behavioural responses, such as strategies of using formal and informal help, moving away from environmental pressures, mobility, actively involved in changing the environment, as well as attitudinal adaptation strategies, such as acceptance, resilience, using distraction, modesty and planning for the future. We further emphasize how these coping strategies are linked to individual and community capabilities, which function as a conversion factor. Nasl. z nasl. zaslona. Opis vira z dne 15. 3. 2023. Bibliografija: str. 11-14. Abstract.

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support. Nasl. z nasl. zaslona. Opis vira z dne 3. 3. 2023. Bibliografija: str. 15-17. Abstract.

Zaradi napredka pri odkrivanju raka in boljšega zdravljenju, narašča število oseb, ki bolezen preživijo, oziroma z boleznijo živijo. Preživetje prinaša tolažbo, a kljub temu se za nekatere borba tu ne ustavi. Kakovost življenja je lahko bistveno zmanjšana zaradi fizičnih, psihičnih in praktičnih težav, s katerimi se bolniki še vrsto let po končanem zdravljenju borijo. Raziskave poročajo, da imajo onkološki bolniki v primerjavi z zdravimi kontrolami več težav in da te lahko vztrajajo še nekaj mesecev ali let po koncu zdravljenja. Težave so multidimenzionalne in se najpogosteje nanašajo na različne zdravstvene težave (več vnetij in kroničnih bolezni, kognitivne težave, prezgodnja menopavza) na simptome depresije in tesnobnosti in druge čustvene motnje (strah pred ponovitvijo bolezni, slabša samopodoba), težave z zaposlitvijo in seksualnostjo. Primerjava onkoloških bolnikov po koncu zdravljenja z bolniki, ki so še v procesu zdravljenja, je pokazala, da se prvi srečujejo z drugačnimi potrebami in čeprav v očeh zdravstvene oskrbe niso več bolniki, imajo še vedno velika pričakovanja glede spremljanja bolezni in njenih posledic. Odsotnost (ponovne) diagnoze bolezni torej nujno ne pomeni, da bo imel onkološki bolnik enake potrebe glede zdravstvene oskrbe kot pred boleznijo. Obravnavanje potreb bolnikov, ki so preživeli raka, je pomembno, ker longitudinalne študije kažejo, da nezadovoljene potrebe vplivajo na slabšo kakovost življenja bolnikov, povečajo pogostost obiskov ambulant družinske medicine in, kar je najpomembneje, ne izginejo same od sebe, ampak povzročijo več nezadovoljenih potreb v prihodnosti. Žilavost (ang. resilience), ki je definirana kot proces in rezultat uspešnega prilagajanja težkim in zahtevnim življenjskim izkušnjam, lahko ublaži negativne učinke bolezni in zdravljenja ter pomaga razviti vedenja, ki spodbujajo zdravje. V osnutku Državnega programa obvladovanja raka (DPOR) za leto 2017-2021 omenjajo kot enega izmed prednostnih ciljev zagotavljanje celostne rehabilitacije (medicinske, psihološke, socialne in poklicne) od diagnoze dalje. Analiza položaja izvedena spomladi 2016 je pokazala, da je priložnost DPOR 2017-2021 sledenje in kakovostna obravnava po končanem zdravljenju na primarni ravni. Kot eno izmed nevarnosti pa omenjajo pomanjkanje smernic za onkološke bolnike. Vloga zdravnika družinske medicine po koncu zdravljenja v Sloveniji ni dobro opredeljena, ni sprejetih smernic, ki bi opredeljevale vlogo primarnega zdravstvenega varstva, izobraževanje v klinični onkologiji v času specializacije ni zadostno, komunikacija med zdravnikom in onkologom poteka predvsem preko napotitev, celoletna napotitev na onkologa zmanjšuje vlogo družinskega zdravnika, metoda usmerjanja pacintov na rehabilitacijo s primarne ravni ni optimalna neustrezna pa je tudi vključitev ambulant družinske medicine v paliativno oskrbo. Kljub vsemu pa imajo zdravniki družinske medicine zaradi vseh informacij o bolniku, njegovi zgodovini, prisotnosti drugih bolezni, bolnikovem družinskem položaju ter njihovi celoviti in in stalni oskrbi bolniku veliko ponuditi. Pomanjkanje ustreznic smernic, kako nasloviti potrebe onkoloških bolnikov po koncu zdravljenja v družinski medicini, je problematično ne le zaradi povečanja števila preživelih onkoloških bolnikov, temveč tudi zaradi vedno bolj kronične narave bolezni, visoke razširjenosti komorbidnih bolezni in povezanih psihosocialnih težav. Ocenjevanje nezadovoljenih potreb je strategija, ki se osredotoča na odkrivanje bolnikovih nezadovoljenih potreb, ugotavljanje ali potrebujejo nadaljnjo podporo ter obseg podpore, ki jo potrebujejo. Ocena potreb je ali bi vsaj morala biti stalen proces priporočljivo je, da se izvaja na različnih fazah preživetja in se spremlja, da se ugotovi, kako se spreminja skozi čas. Do danes je bilo razvitih več instrumentov, ki jih je mogoče uporabiti za oceno nezadovoljenih potreb preživelih z rakom po zaključku njihovega zdravljenja. Lestvica o nezadovoljenih potrebah SUNS (ang. Survivor Unmet Needs Survey) ima glede na literaturo najmočnejše psihometrične lastnosti, lestvica CaSUN (ang. Cancer Survivors Unmet Needs scale) pa je najbolj celovita, saj obsega največje število področij, ki se tičejo potreb bolnikov po koncu zdravljenja (npr. praktične, fizične ali čustvene potrebe), zaradi česar smo se odločili lestvico CaSUN vključiti v naš nabor merskih instrumentov. Namen doktorskega dela je bilo ugotoviti pojavnost nezadovoljenih potreb bolnic z rakom dojke v Sloveniji in preučiti kateri dejavniki, povezani z bolnikom in zdravljenjem, so močneje povezani z višjimi stopnjami nezadovoljenih potreb na vzorcu slovenskih preživelih z rakom dojke. Pričujoče delo je sestavljeno iz treh delov in petih poglavij. Teme opisujejo a) postopek pregleda literature, b) pridobivanje ustreznih merskih instrumentov in c) ocenjevanje nezadovoljenih potreb v izbrani populaciji. Poglavja predstavljajo objavljeno delo, ki je bilo opravljeno za izpolnitev določenega namena. Pred zbiranjem podatkov so bile oblikovane hipoteze, s katerimi smo preverjali veljavnost in zanesljivost izbranih merskih inštrumentov (H1. Slovenska različica CaSUN je veljavno in zanesljivo orodje H2. Slovenska različica RS-14 je veljavno in zanesljivo orodje), pojavnost nezadovoljenih potreb pri slovenskih bolnicah z rakom dojke (H3. Vsaj 30 odstotkov preživelih z rakom dojke poroča o vsaj eni neizpolnjeni potrebi) in možnost izdelave multivariatnega modela, s katerim bi prepoznali lastnosti, ki se kažejo kot bolj povezane z nezadovoljenimi potrebami onkoloških bolnic z rakom dojke (H4. Multivariatni model identificira potencialne dejavnike, ki napovedujejo neizpolnjene potrebe pri preživelih z rakom dojke). V uvodu najprej pregledamo in opredelimo faze preživetja raka (ang. cancer survivorship) in nezadovoljene potrebe znotraj družinske medicine. V nadaljujevanju povežemo nezadovoljene potrebe z nekaterimi ključnimi pojmi, kot so strah pred ponovitvijo bolezni (ang. fear of cancer recurrence) in žilavost. Nazadnje pa še pregledamo trenutno razpoložljive intervence za naslavljanje nezadovoljenih potreb in njihove rezultate. V 1. poglavju smo pregledali že obstoječo literature o nezadovoljenih potrebah onkoloških bolnikov po koncu zdravljenja. V pregled smo vključili šestindvajset študij. Večjo pojavnost vsaj ene nezadovoljene potrebe smo opazili pri bolnicah, pri katerih je od zdravljenja minilo manj časa in pri ženskah, katere so prebolele raka dojke. Najpogosteje poročane nezadovoljene potrebe so bile strah pred ponovitvijo raka in nedostopnost posodobljenih informacij. Mlajša starost bolnikov, večja tesnoba in slabša kakovost življenja, so bile spremenljivke povezane z višjo ravnjo nezadovoljenih potreb. V vključene merske inštrumente, smo poleg socialne podpore, ki se kaže kot pomemben varovalni dejavnik pri boljšem mentalnem zdravju in kakovosti življenja, dodali še žilavost, saj je pogosto opisana kot relevanten koncept, še zlasti za tiste bolnike, ki so ravno končali zdravljenje in prehajajo v fazo podaljšanega preživetja (e.g. extended survivorship). V 2. poglavju zato najprej pregledamo že objavljene psihometrične študije o Lestvici za samooceno žilavosti (ang. 14-item Resilience Scale RS-14), katero nato prevedemo in validiramo v 3. poglavju. V Sloveniji je področje potreb bolnikov z rakom slabo opisano. Obstaja nujna potreba po jezikovnem prevodu razpoložljivih instrumentov. Preden smo torej lahko ocenili nezadovoljene potrebe, smo morali prevesti in validirati ustrezne instrumente. V 3. poglavju in 4. poglavju smo prevedli in validirali lestvici CaSUN in RS-14 in s tem potrdili hipotezi H1 in H2. Faktorsko strukturo smo pregledali z eksploratorno analizo in potrdili s konfirmatorno analizo. Psihometrične lastnosti so bile ocenjene z notranjo konsistentnostjo, zanesljivostjo testa in ponovnega testiranja ter veljavnostjo konstrukta. Obe lestvici sta se izkazali kot veljavni in zanesljivi za ocenjevanje nezadovoljenih in zadovoljenih potreb ter skupno vrednostjo lestvice CaSUN, ter žilavosti slovenskih bolnikov z rakom po končanem zdravljenju. V 5. poglavju smo zbrali in analizirali podatke 430 bolnic z rakom dojke, ki so končale primarno zdravljenje, ocenili smo pojavnost in identificirali dejavnike, povezane z višjimi ravnmi nezadovoljenih potreb. V tej študiji smo ugotovili, da 67% preživelih poroča o vsaj eni srednje do visoko nezadovoljeni potrebi (in s tem potrdili hipotezo H3), vključno s pomanjkanjem dostopnega bolnišničnega parkirišča in strahom pred ponovitvijo bolezni. V študiji smo ugotovili, da so mlajše bolnice, katere imajo tri ali več sočasnih bolezni, nižjo kakovost življenja in nizke nivoje žilavosti, v multivariatnem regresijskem modelu povezane z višjimi nivoji nezadovoljenih potreb. S tem smo potrdili hipotezo H4. Doktorsko nalogo zaključimo s pregledom in splošno razpravo, v kateri smo rezultate študij primerjali z drugimi študijami in jih postavili v širšo perspektivo. Podali smo več priporočil za prihodnje raziskave, med drugimi spremljanje bolnic skozi daljše časovno obdobje, analiza grozdov (ang. cluster analysis), vključitvijo redkejših oblikov raka in simptomov, ki niso del standardiziranih instrumentov za merjenje nezadovoljenih potreb, a za bolnice zelo pomembni (npr. utrujenost, težave s spanjem, kognitivne težave). Zapisali smo tudi klinične implikacije za zdravstvene delavce, ki so vključeni v skrb za onkološke bolnike po koncu zdravljenja. Morda ena izmed najpomembnejših ugotovitev naše študije je identifikacija mlajših bolnic preživelih z rakom dojke, ki so imele višje nezadovoljene potrebe glede na skupni rezultat CaSUN in na dveh drugih domenah (celovita oskrba raka ter psihološka in čustvena podpora). Mlajše bolnice z rakom dojke imajo večjo potrebo po interakciji z drugimi bolnicami z rakom njihove starosti, ker se pogosto počutijo izolirane. Poleg tega se soočajo s številnimi izzivi, vključno s težavami s plodnostjo, povečanjem telesne teže, kronično utrujenostjo in kognitivnimi motnjami. Kljub potrebi, da se bolnice želijo med seboj povezati in bi si na ta način lahko med seboj povezale preko skupin za bolnice, pa so preliminarni podatki naše kvalitativne študije pokazali, da imajo bolnice močno potrebo po dostopnem zdravstvenem delavcu in da želijo skrbi in težave zaupati naslavljati znotraj zdravstvenega sistema. Potrebne so longitudinalne študije, da se ugotovi, kateri bolniki (a) imajo vztrajno nizke ravni nezadovoljenih potreb, b) imajo na začetku visoke ravni nezadovoljenih potreb, ki se sčasoma zmanjšajo, (b) imajo vztrajno in znatno visoke ravni nezadovoljenih potreb in (c) imajo na začetku nizke ravni nezadovoljenih potreb, ki se sčasoma poslabšajo. Na podlagi doktorskega dela zdravnikom družinske medicine priporočamo, da bodo pozorni na onkološke bolnike, ki so mlajši in imajo več sočasnih bolezni, saj je bilo ugotovljeno, da so te značilnosti bolnikov pomembno povezane z visokimi stopnjami nezadovoljenih potreb in kar je pomembno, to so spremenljivke, ki jih je mogoče odkriti brez dodatnega časa. Due to advances in cancer detection and better treatment, more and more patients are surviving cancer. While surviving cancer may be a comfort to some, others continue to struggle with physical, emotional and practical issues and struggle for years with late and long-term effects. Addressing the needs of cancer survivors is important because longitudinal studies show that unmet needs affect patients' quality of life, increase the frequency of visits to health care facilities, and, most importantly, do not resolve themselves but cause more unmet needs in the future. By strengthening resilience, cancer survivors can mitigate the negative effects of the disease and treatment and develop health-promoting behaviours that enable them to positively integrate these changes into their lives. The aim of this dissertation was to obtain a Slovenian version of the 14-item Resilience Scale (RS -14) and the Cancer Survivors Unmet Needs (CaSUN) scale to determine the prevalence of unmet needs in breast cancer survivors after treatment and to identify sociodemographic, clinical, and psychosocial variables associated with high levels unmet needs. Besides general introduction and discussion, this dissertation consists of three parts and five chapters. The themes describe the process of reviewing the literature, obtaining validated measures, and assessing unmet needs in a selected population. The chapters present the published work that was conducted to fulfil the proposed purpose. Chapter 1 provided background information on the unmet needs of survivors after cancer treatment. Chapter 2 presented psychometric studies on the 14-item resilience scale (RS-14), which we further use in Chapter 3. In Slovenia, the topic of cancer survivors' needs is poorly described. There is an urgent need for language translation of the available instruments. Thus, before we could assess unmet needs, we needed to translate and validate appropriate instruments. In Chapters 3 and Chapter 4, we translated and validated the CaSUN and RS-14 in a sample of participants without cancer and survivors of cancer. Factor structure was examined with exploratory analysis and confirmed with confirmatory analysis. Psychometric properties were assessed using internal consistency, test-retest reliability, and construct validity. Both measures were found to be valid and reliable measures for assessing unmet, met, and total needs, and resilience of Slovenian cancer survivors. In Chapter 5, we analysed data from 430 breast cancer survivors post primary treatment, assessed prevalence, and identified factors associated with high levels of unmet need. In this study, we found that 67% of survivors reported at least one unmet need, including lack of accessible hospital parking and concern about recurrence. Younger age, three or more comorbidities, lower quality of life, and low resilience were associated with high levels of unmet needs in the multivariate regression model. We ended this thesis with an overview and general discussion comparing the results of other studies and placing them in a broader perspective. Several recommendations for future research and clinical implications were made.

OnkoVed (prvotno mPRO Mamma) je obstoječa aplikacija za spremljanje stranskih učinkov kemoterapije, razvita za platformo Android. Nastala je v sodelovanju z Onkološkim inštitutom, kjer so z uporabo aplikacije uspešno izvedli raziskavo o kakovosti življenja pri bolnicah z rakom na dojkah. Tekom raziskave so se pojavile potrebe po dodelavi in spremembi nekaterih funkcionalnosti. V diplomski nalogi proučimo obstoječo aplikacijo, jo razvijemo za drugo najbolj razširjeno mobilno platformo iOS ter nadgradimo z želenimi razširitvami. Aplikacija podpira spremljanje stranskih učinkov, zdravniških pregledov in terapij grafični prikaz podatkov prikaz koristnih povezav vnos osebnih podatkov izbiro vrste raka in tipa uporabnika možnost odgovarjanja na standardizirane vprašalnike možnost nastavitve opomnika in varno deljenje podatkov z izbranim onkologom. Aplikacija se že poskusno uporablja na Onkološkem inštitutu. OnkoVed (formerly mPRO Mamma) is an existing Android application for monitoring chemotherapy side effects. It was developed in collaboration with the Institute of Oncology Ljubljana, where it was used to conduct a research about qualify of life in patients with breast cancer. Throughout the research, feedback was gathered which showed the need for improvement and change to some of the functionalities the application offers. In this thesis we examine the functionalities of the existing application and develop it for the second most popular mobile app platform - iOS. The application supports tracking of side effects during treatment, doctor appointments and therapies graphical visualisation of data presents helpful links supports managing of personal data provides the option choose diagnosed type of cancer supports multiple user types provides standardised questionnaires which the user can answer supports reminders and the option for users to safely share their data with their doctor. The application is experimentally already being used by the Institute of Oncology Ljubljana.

Magistrsko delo je usmerjeno v raziskavo kakovosti življenja odraslih z intelektualno oviranostjo, starejših od 26 let, ki živijo doma, na področju savinjske regije. Raziskovalno delo izhaja iz socialnega modela in teorij na področju hendikepa, predvsem pa vključuje glas ljudi z intelektualno oviranostjo, ki so imeli pri raziskavi osrednjo vlogo. Osrednje mesto raziskave je namenjeno ljudem z intelektualno oviranostjo, njihovemu vsakodnevnemu življenju v domačem okolju, odnosu družbe do njih, njihovemu doživljanju življenja doma, vključenosti v ožje in širše okolje, odnosu s svojci, delu, prostemu času, materialnemu položaju, partnerstvu, zdravstveni problematiki, vlogi staršev in dostopu do storitev. The master’s thesis researches the quality of life of adults with intellectual disabilities, older than 26 years, who live at home in the area of the Savinja region. The research work is based on the social model and theories from the field of handicap, but mostly, it includes the voice of people with intellectual disabilities, who had the main role in the research. The main place of the research is reserved for people with intellectual disabilities, their daily life in the domestic environment, the attitude of society towards them, how they experience their life at home, their inclusion in the narrow and wider environment, their relations with relatives, work, spare time, material position, partnership, health issues, the role of parents and access to services.