The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person’s need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers’ self-image were connected to intimacy, decreasing personal space and experiences such as “forbidden thoughts”. The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

Bakgrund: Den palliativa vården syftar till att förbättra livskvalité för patienter och närstående och erbjuda dem stöd. Stöd till närstående kan ske på olika sätt, där god kommunikation är av betydelse för att minska oklarheter. Inom den palliativa vården förekommer det en rad samtal och ett av dem är närståendesamtalet som är ett kliniskt verktyg för att kommunicera med närstående. Forskning beskriver närståendesamtalet som användbart för vårdpersonal för att förmedla information och planera vården. Det finns ett behov av mer forskning som inriktar sig på närståendes perspektiv och undersöker vilken stödjande funktion samtalet kan ha. Syfte: Att beskriva närståendes förväntningar och upplevelser av ett närståendesamtal under pågående vårdtid. Metod: Studien har en explorativ design, där närståendesamtalet utforskas för att få ny kunskap. Femton individuella intervjuer genomfördes med närstående efter att de har deltagit i ett närståendesamtal inom specialiserad palliativ sluten vård. Intervjuerna transkriberades Verbatim och analyserades genom Sally Thone tolkande beskrivning. Resultat: Närståendes förväntningar och upplevelser presenteras utifrån fyra mönster som är närståendes behov av att få en förståelse av situationen, faktorer som kan inverka på upplevelsen av närståendesamtalet, närståendes situation och behov av stöd och till sist närståendes råd och förslag till förbättring av närståendesamtalet. Närståendes förväntningar inför närståendesamtalet grundar sig i en ovisshet och en främmande situation. Deras upplevelser av samtalet är avhängigt av en rad aspekter och resulterar i ett behov av att individanpassa närståendesamtalet. Diskussion: Resultatet diskuteras till viss del utifrån den teoretiska referensramen delaktighet i ljuset, delaktighet i mörkret. Närståendes medverkan i forskningen lyfts fram och diskuteras likaså ”insider forskningen” när studien genomförs inom den egna verksamheten. / Background: The palliative care aims to improve the quality of life for patients as well as their families, and to offer them support. Family members can be supported in several ways, where good communication is important to reduce uncertainties. In the course of palliative care, there will be held multiple conversations and one of these is the family conversation which is a clinical tool to communicate with the family members. Research describes this conversation as useful for healthcare professionals to relay information and planning care. There is a need for more research focused on the perspective as seen from the family members and which can further investigate which supporting function the conversation can have.Purpose: To describe family members´ expectations and experiences of a family conversation during the ongoing palliative care. Method: The study has an explorative design, where the family conversation is explored to reveal new knowledge. Fifteen individual interviews were conducted with family members after they had participated in a family conversation within specialist palliative inpatient care. The interviews were transcribed verbatim and analysed using Sally Thone's interpretive description. Results: The family members´ expectations and experiences are presented on the basis of four patterns: family members´ need to get an understanding of the situation, factors that may affect the experience of the family conversation, family members´ situation and need of support and finally family members´ councils and suggestions for the improvement of the family conversation. Family members´ expectations prior the conversation are based in an uncertainty and an unfamiliar situation. Their experiences of the family conversation were highly individual and depend on several aspects, which results in a need to individualise and adapt the conversation on the unique situation. Discussion: The result is to a certain degree discussed with the basis in the theoretical reference framework participation in the light, participation in the darkness. Family members´ involvement in research is emphasised and discussed as well as "insider research" when the study is conducted within the frame of the own setting.

Background: Patients who receive palliative home care are in need of support from their family members who take on great responsibility related to the patients’ care but who often feel unprepared for the situation. An increasing number of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to the patient. It has been suggested that family members are likely to provide better support or care with positive experiences for the patients after intervention participation. However, this has not been studied from the perspective of the patients themselves. Aim: The aim is to explore patients’ experiences after their family member participates in apsycho- educational intervention during palliative care. Method: This study has a qualitative approach and interviews were conducted with eleven patients whose family members had participated in a psycho-educational intervention during palliative home care. The interviews were analyzed with interpretive description. Results: Patients’ experiences are represented by three themes: Safe at home; A facilitated and more open communication; and Feeling like a unit of care. Patients experienced that their needs were better met and that their family members became more confident at home without risking their own health. Patients felt relieved when their family member was given the opportunity to talk and reflect with others in the same situation and hoped that the intervention would contribute to a more honest communication between them and their family member. Further, it was of great importance to the patients that their family members got the attention and were confirmed and supported by the healthcare professionals. Conclusion: These findings show how an intervention targeted at family members during palliative home care also benefited the patients. The findings are therefore useful when developing support to family members in palliative care. / Bakgrund: Patienter som erhåller palliativ hemsjukvård är i stort behov av stöd från sina närstående, som ofta tar ett betydande ansvar för patientens vård. Dock känner sig  närstående ofta otillräckligt förberedda för situationen. Ett ökat antal interventioner som syftar till att stödja närstående i palliativ vård har beskrivits och utvärderats. Det är inte känt om eller hur dessa interventioner påverkar patienten men det har föreslagits att närstående troligtvis ger bättre vård och stöd med positiva erfarenheter för patienten. Detta har dock inte studerats från patientens perspektiv. Syfte: Att undersöka patienters erfarenheter av vård och stöd i hemmet efter att deras närstående deltagit i en intervention under pågående palliativ vård. Metod: Studien har en kvalitativ utgångspunkt och är designad utifrån tolkande beskrivning. Intervjuer genomfördes med elva patienter vars närstående deltagit i ett stöd och informationsprogram under pågående palliativ hemsjukvård. Resultat: Patienternas upplevelser presenteras genom tre teman: Trygghet i hemmet, En underlättad och mer öppen kommunikation och Känsla av att vara en enhet för vård. Patienterna upplevde att deras behov blev bättre tillgodosedda, deras närstående fick mer självförtroende hemma och vården skedde utan att riskera närståendes hälsa. Patienterna kände sig lättade över att deras närstående fick en möjlighet att tala och reflektera med andra i samma situation och hoppades att interventionen skulle medföra en förbättrad och ärlig kommunikation mellan dem och deras närstående. Vidare så var det viktigt för patienterna att deras familjemedlem fick uppmärksamhet och blev bekräftade och stöttade av vårdpersonalen. Slutsats: Dessa resultat visar hur en intervention riktad mot närstående under palliativ hemsjukvård även kommer patienten till nytta. Resultatet kan bidra med kunskap för utveckling av stöd till närstående i palliativ hemsjukvård.

<p>Consistent with the paradigm of evidence informed decision making we assume that research findings are integrated into health services practice and policy. However, there is a gap betweeen research findings and usual practice. Collaborative research, where researchers are encouraged to partner with decision makers to conduct mutually agreed and relevant research, may facilitate prompt utilization of new findings. My study explored decision makers’ experiences of collaborative teams executing federally funded health research. The principles of interpretive description were used to guide sampling, data collection, and analysis. A purposeful sample of 27 decision makers, collaborating on Partnerships for Health System Improvement (PHSI) projects funded by the Canadian Institutes of Health Research, participated in two in-depth interviews. Conventional content analysis was used to identify concepts. The conceptual framework was developed inductively from the descriptive data and provided a structure for interpreting decision maker perspectives. The framework posits an explanation leading to contextual understanding of their experiences. This study describes factors affecting PHSI engagement that include: availability of new funding; positive history with the researcher; prospect of tangible benefits to constituents of decision makers; desire to contribute to research that informs health services programs and policies; capacity building; and knowledge creation. The partnership process is facilitated by fostering connections; identifying required skills and competencies; maintaining a sustainable focus of inquiry; clarifying roles and responsibilities; cultivating a nurturing learning environment. My findings will inform decision makers, researchers, and funding agencies about the experience and legacy of collaborative research partnerships.</p> / Doctor of Philosophy (PhD)

Introduction: Dexterity impairments are common and disabling. Measuring the extent of these impairments is important for care and service provision. Despite this, dexterity is poorly operationalized in the management of persons with hand and wrist conditions (HWC). Thesis purpose: To understand: 1) how dexterity is defined in the management of persons with HWC and 2) how therapists working with persons with HWC perceive/understand the concept and measurement of dexterity and use of performance-based outcome measures of dexterity (PBOMD). Methods: In study one, Interpretive Description was used to understand the perceptions and measurement practices of occupational therapists working with persons with HWC in Singapore. Study two involved a content analysis of the literature outlining the constructs measured by PBOMD that were validated for use in persons with HWC. Results: Both studies highlighted the lack of conceptual clarity around ‘dexterity’ that is reflected in therapists’ and tool developers’ discourse. Many of the therapists we interviewed, perceive PBOMD to lack clinical value. Studies from this thesis suggest that identified PBOMD do not adequately cover dexterity. Conclusion: Findings highlight the challenges surrounding the construct of dexterity and provide clinical practice recommendations. / Thesis / Master of Science Rehabilitation Science (MSc) / Dexterity is the ability to do tasks, successfully, quickly and accurately. Loss of dexterity is common and affects our ability to do our tasks of daily life and work. Unfortunately, there is a lack of agreement on the best way to measure dexterity. Our study aims to explore what dexterity means to health professionals. We focused on occupational therapists seeing persons with hand and arm injuries. In the first study, we interviewed therapists to understand how they measured dexterity. In the second study, we searched for dexterity tests used with persons with hand injuries. Then, we compared the tests we found to dexterity theories. We found that dexterity is measured in different ways. Therapists faced many barriers to using dexterity tests. Current dexterity tests are an incomplete reflection of a person’s dexterity. The information gained from these studies could be used to inform future research on the measurement of dexterity.

Urinary incontinence (UI) is a common complication of type 2 diabetes mellitus (T2DM) for older adults (≥65 years) that is associated with reduced quality of life and risk of institutionalization. This convergent, mixed methods research study, informed by a model of clinical complexity, explored the complexities for older adults living with UI and T2DM, and home-care nurses providing care to this population in Ontario. In the quantitative strand, the most recently completed Resident Assessment Instruments for Home Care from 2011-2016 for older home-care clients with diabetes were analyzed to determine the prevalence and correlates of UI. The qualitative strand used interpretive description methodology to explore the experiences of 18 older adults living with T2DM and UI receiving home-care services and the experiences of 15 home-care nurses caring for this population. These data sources were converged to describe the factors that contributed to complexity for older adults with UI and T2DM: (a) challenges of living with multiple chronic conditions (MCC), medical instability, and high care needs; (b) financial barriers; (c) lack of understanding of older adults’ values and preferences by health-care providers; (d) caregiver burden; and (e) functional impairments. The health-care system contributed to this complexity through: (a) inadequate and minimal provision of nursing and interprofessional home-care services; (b) task-focused structure of home care; (c) minimal interprofessional collaboration; (d) lack of an integrated communication system; and (e) lack of navigation to community resources. Providing health-promoting care for older adults with UI and T2DM requires a system-wide enactment of integrated care that takes both a person- and family-centred care and social determinants of health approach. Interventions for older adults with MCC should involve standardized and comprehensive assessment, care coordination, enhanced nursing service provision, and interprofessional team collaboration to attend to the dimensions of complexity and ensure the needs of older adults and their caregivers are met. / Thesis / Doctor of Philosophy (PhD) / Many older adults with diabetes have urinary incontinence that is emotionally and physically bothersome. These older adults also receive home-care services. In this study, older adults were asked about how they care for their diabetes and incontinence and how their home-care workers help them with this care. Nurse participants were asked how they help older adults with diabetes and incontinence and the challenges they face. The results of home-care assessments done in Ontario were also analyzed to learn how common incontinence is in older adults with diabetes and factors associated with having incontinence. The study found many factors, such as living with many chronic conditions and lack of finances, as well limited home-care service provision and the task-focus of home care created challenges for these older adults. The findings can help in making changes to home-care service delivery to improve care for older adults and their caregivers.

Background and Objectives: Recent immigrants experience unique challenges when accessing health services. Registered Nurses (RNs) working in primary health care (PHC) have the competencies and are well-positioned to facilitate healthcare access for immigrants. Aim: This study explored how PHC-RNs in Ontario support healthcare access and address barriers among recent immigrants. Methods: This study used a qualitative, interpretive descriptive approach and was informed by Levesque et al.’s (2013) access to care framework. Semi-structured interviews were conducted with 10 PHC RNs practising in Toronto, Ottawa-Gatineau, Hamilton, Kitchener-Cambridge-Waterloo, and London. Data were collected and analyzed concurrently using an inductive and deductive approach. Results: Findings show that PHC-RNs play instrumental roles in supporting recent immigrants through facilitating healthcare access across 9 dimensions of Levesque et al.’s (2013) access framework: (1) appropriateness, (2) availability and accommodation, (3) ability to perceive, (4) ability to engage, (5) ability to seek, (6) ability to reach, (7) affordability, (8) ability to pay, and (9) acceptability. RNs addressed significant challenges to health service access for recent immigrants, including language, geographical, and financial barriers. Several opportunities were identified to enhance the PHC RN clinical practice role to improve the delivery of PHC for recent immigrants, such as increasing organizational resources, utilizing their expertise and role beyond the PHC clinic, and promoting culturally appropriate care. Conclusions: PHC-RNs are key facilitators of healthcare access for recent immigrants by coordinating their care, educating, and connecting this population to services across the health system. However, there are opportunities to optimize nursing roles and more effectively utilize their scope of practice within interdisciplinary teams to promote the health of immigrants. / Thesis / Master of Science in Nursing (MSN)

Bakgrund: Vid palliativ vård i hemmet förändras tillvaron såväl för den sjuke som för de närstående. Den sjuke har ofta svårt att äta vanlig mat och kan behöva tillförsel av konstgjord näring. Närstående kan uppleva ett stort ansvar för den sjukes näringsintag när han eller hon vårdas hemma. Adekvat näringsintag är av betydelse för det fysiska välbefinnandet. Men vad vi äter påverkar också livskvalitet i social, kulturell och psykologisk bemärkelse. Tillgänglig forskning om hur det kan vara att leva med någon som är beroende av konstgjord näring i relation till svår sjukdom har i stor utsträckning ett biomedicinskt perspektiv och fokus på praktiskt handhavande och tekniska problem relaterade till näringsbehandlingen. Syfte: Att få ökad kunskap om närståendes erfarenheter av att ha delat vardagen med en partner som fått konstgjord näring i livets slutskede. Metod: Kvalitativ induktiv ansats med datainsamling genom öppna enskilda intervjuer. Datainsamling/databearbetning genomfördes med tolkande beskrivning. Resultat: I resultatet har tre övergripande teman och dess inneboende variationer identifierats; situationer kring mat och näring skapar delaktighet och utmanar; strävan efter vardaglighet genom måltider i en förändrad tillvaro; näring skapar förhandlingsutrymme med döden. Den konstgjorda näringen skapade en trygghet för de närstående, både som en försäkran om en fortsatt existens och genom den kontinuerliga kontakt med hemsjukvårdsteamet som näringsbehandlingen medförde. Personerna i studien beskrev positiva aspekter av att vara delaktiga i vården av den sjuke, men också känslor av maktlöshet och skuld inför att inte lyckas överskrida den sjukes svårigheter att äta och dricka. I den förändrade tillvaron kunde de närstående personerna finna det goda men de upplevde också ett främmandeskap inför sin sjuka partner. I situationen kunde näringsintaget utgöra ett existentiellt hot eller hopp. Slutsats och diskussion: Resultatet illustrerar hur komplex situationen att leva med en svårt sjuk partner som i livets slutskede har svårt att äta och behöver tillskott av konstgjord näring, kan upplevas. Personernas erfarenheter var varierande och det kan antas vara av betydelse att vårdpersonal har stor öppenhet för hur den förändrade vardagen upplevs för varje enskild närstående. En öppen och ömsesidig dialog kring ätsvårigheter och konstgjord näring kan vara av stor betydelse för de närståendes förmåga att hantera vardagen med den sjuke.

Background: Migration is a global phenomenon that characterize today’s globalized world. Although, the relationship between migration and health in the host countries is not always negative, many countries, including Sweden are concerned about possible spread of infectious diseases of public health significance such as HIV/AIDS and tuberculosis (TB). Moreover, apart from disease profiles, migrants also have different socio-cultural backgrounds, which may challenge health care access and provision. Objectives: To investigate, identify, and delineate potential challenges of relevance in the care and prevention of communicable diseases of public health significance in general and particularly HIV/AIDS and TB among migrants from countries where these infections are endemic, and eventually generate knowledge that could inform policies and practice. Methods: Data for this thesis were collected in four of the five counties of the Northern region in Sweden. Quantitative and qualitative methods were used including a survey of 268 migrant students in two language schools (I &amp; II); an interview study with 10 care providers caring for patients with migrant backgrounds and observations of care encounters (III) and an interview study with 15 care providers experienced in screening migrants (IV). Descriptive and logistic regression analyses were used to summarize survey data whereas a thematic analysis approach was applied to the qualitative data within the interpretive description framework. Results: The students scored on average low on both HIV/AIDS and TB knowledge and displayed misconceptions and negative attitudes towards the two diseases and infected/sick persons. Knowledge level and attitude could be predicted by prior knowledge, years of previous education and geographic origin. In contrast, no association was found between being screened and the level of TB knowledge or attitude towards TB and infected/sick persons. However, fear of being deported appeared to be the main predictor of reluctance to seek HIV/AIDS care after controlling for socio-demographic factors, knowledge level, stigmatizing attitudes and fear of disclosure. Health care providers described complex and intertwined challenges that influenced both care delivery and receipt. The challenges described included language, the socio-cultural diversity within migrant groups and between migrants and the caregivers. These often resulted in divergent perceptions and expectations about care and caring. The participants highlighted the complexities of caring for diverse patients within different institutions with conflicting policies and frameworks. They also described the difficulties the migrants face in navigating the Swedish care system. Conclusions: This thesis illuminates complex challenges in the care of migrants. The findings emphasize the need for multilevel strategies in order to remove identified barriers. This requires accommodating diversity by improving care providers’ cultural competence and migrants’ health literacy. It further requires policies and practices that emphasize health services responsiveness in order to provide equal access and equitable care. Finally, it entails revisiting existing policies and legislative frameworks to promote a change in ways of thinking about and approaching migration, HIV/AIDS and TB issues, to address the specific vulnerabilities of mobile populations in a world on the move.

According to the World Health Organization (WHO), people throughout the world become sick every year from consuming contaminated foods, which impacts countries’ socioeconomic development, straining their healthcare system, travel and tourism, and foreign trade markets. To help alleviate the impact foodborne illness (FBI) has on society, scholars suggest physicians incorporate food safety in their standard work practice. The purpose of this study was to determine if Harlem Hospital physicians utilized food safety knowledge in comprehensive patient care with a diagnosis of FBI, in addition to how physicians passed this food safety information onto the patient. A qualitative methodology using an interpretive description approach was used to determine 52 physicians' utilization of food safety accompanied by Slotnick four-stage theory of physician’s learning as the study’s theoretical foundation. The study found that Harlem Hospital medicine and ICU physicians were more knowledgeable in FBI than other hospital physicians, and even though physicians’ definitions of FBI were different, all physicians' answers corresponded with the behaviors of clean, separate cook and chill. The research concludes Harlem Hospital physicians know how to diagnose and treat patients with FBI, and physicians acquired their knowledge of food safety through multiple resources. The study also found the physicians do not always include food safety in comprehensive patient care. However, all physicians agreed patients should be educated in food safety to prevent its reoccurrence. When physicians provide education at the bedside, this may help increase patient awareness in food safety, reducing hospital readmission rates, leading to a positive social change.