<p>Stroke är en vanlig sjukdom som årligen drabbar 30 000 personer i Sverige. Personer som insjuknar i stroke kan drabbas av fysiska och psykiska funktionsnedsättningar. Konsekvenserna av stroke drabbar även de närstående som många gånger tar på sig vårdgivarrollen till den anhöriga. Närståendevårdare till en anhörig som har insjuknat i stroke får bära ett tungt vårdansvar. Syftet med detta vetenskapliga arbete var därför att belysa närståendevårdares upplevelser av att vårda en anhörig som har insjuknat i stroke. Arbetet utfördes som en litteraturstudie där 16 vetenskapliga artiklar granskades. I resultatet framkom två teman, <em>Att vårda är betungande</em> och <em>Att</em> <em>vårda är att anpassa sig</em>. Resultatet visade att närståendevårdarna upplevde en tung börda, ensamhet och frustration. Närståendevårdarna upplevde att det var jobbigt och tidskrävande att anpassa sin vardag till den anhöriga. Det framkom att närståendevårdarna saknade stöd, information och utbildning från hälso- och sjukvårdspersonal för att kunna hantera den nya livssituationen. Sjuksköterskan, liksom all hälso- och sjukvårdspersonal, bör uppmärksamma närståendevårdares situation. Önskvärt är mer omvårdnadsforskning på närståendevårdares copingstrategier, och hur, var och när sjuksköterskan ska ge närståendevårdare stöd, information och utbildning.</p> / <p>Stroke is a common disease that annually affects 30 000 people in Sweden. Stroke survivors may suffer physical and psychological disabilities. The impact of stroke also affects the next of kin´s of the stroke survivor who often become an informal caregiver. Informal caregivers of a relative stroke survivor may experience a heavy caring responsibility. The purpose of this scientific study was therefore to illuminate informal caregivers experiences of caring for a relative who has suffered a stroke. The study was conducted as a literature review in which 16 scientific articles were reviewed. In the result two themes were found, <em>To care is burdened</em> and <em>To care is to adapt</em>. The result showed that informal caregivers experienced heavy burden, loneliness and frustration. Informal caregivers felt that it was difficult and time consuming to adjust their daily lives to the relative. It was found that informal caregivers did not get enough support, information and education from health- professionals which they would have needed to learn how to cope with their new life situation. Nurses, and all health professionals, should pay attention to the situation of the informal caregivers. Continued nursing research on informal caregivers copingstrategies, and, how, were and when the nurse will give informal caregivers support, information and education is desirable.</p>

Stroke är en vanlig sjukdom som årligen drabbar 30 000 personer i Sverige. Personer som insjuknar i stroke kan drabbas av fysiska och psykiska funktionsnedsättningar. Konsekvenserna av stroke drabbar även de närstående som många gånger tar på sig vårdgivarrollen till den anhöriga. Närståendevårdare till en anhörig som har insjuknat i stroke får bära ett tungt vårdansvar. Syftet med detta vetenskapliga arbete var därför att belysa närståendevårdares upplevelser av att vårda en anhörig som har insjuknat i stroke. Arbetet utfördes som en litteraturstudie där 16 vetenskapliga artiklar granskades. I resultatet framkom två teman, Att vårda är betungande och Att vårda är att anpassa sig. Resultatet visade att närståendevårdarna upplevde en tung börda, ensamhet och frustration. Närståendevårdarna upplevde att det var jobbigt och tidskrävande att anpassa sin vardag till den anhöriga. Det framkom att närståendevårdarna saknade stöd, information och utbildning från hälso- och sjukvårdspersonal för att kunna hantera den nya livssituationen. Sjuksköterskan, liksom all hälso- och sjukvårdspersonal, bör uppmärksamma närståendevårdares situation. Önskvärt är mer omvårdnadsforskning på närståendevårdares copingstrategier, och hur, var och när sjuksköterskan ska ge närståendevårdare stöd, information och utbildning. / Stroke is a common disease that annually affects 30 000 people in Sweden. Stroke survivors may suffer physical and psychological disabilities. The impact of stroke also affects the next of kin´s of the stroke survivor who often become an informal caregiver. Informal caregivers of a relative stroke survivor may experience a heavy caring responsibility. The purpose of this scientific study was therefore to illuminate informal caregivers experiences of caring for a relative who has suffered a stroke. The study was conducted as a literature review in which 16 scientific articles were reviewed. In the result two themes were found, To care is burdened and To care is to adapt. The result showed that informal caregivers experienced heavy burden, loneliness and frustration. Informal caregivers felt that it was difficult and time consuming to adjust their daily lives to the relative. It was found that informal caregivers did not get enough support, information and education from health- professionals which they would have needed to learn how to cope with their new life situation. Nurses, and all health professionals, should pay attention to the situation of the informal caregivers. Continued nursing research on informal caregivers copingstrategies, and, how, were and when the nurse will give informal caregivers support, information and education is desirable.

The care provided by informal caregivers is an important part of the support needed by older adults with chronic health concerns. As the demand for caregivers grows, so does an interest in helping caregivers be healthy in order to fulfill this role. As of yet, no research has explored what being healthy means to caregivers. I explore caregivers’ beliefs about being healthy and how their beliefs are consistent with or a challenge to the values present in the health promotion discourse targeting caregivers. I incorporate qualitative data from three sources: interviews with caregivers, interviews with people responsible for creating and updating health promotion brochures (producers), and a critical discourse analysis of health promotion brochures. I explore what being healthy means to caregivers, and I also explore what caregivers do to be healthy. The meaning of being healthy is often discussed by caregivers in terms consistent with the values of neoliberal ideology and individual responsibility. However, the means by which caregivers can be healthy are both consistent with and a challenge to these values. Policy makers interested in finding ways to help caregivers be healthy should take into account that the meaning of being healthy is non-static and multi-dimensional. In addition, the means by which caregivers are able to be healthy are composed of multiple layers. The ability to be healthy depends on each caregiver making healthy decisions and living a healthy lifestyle. However, each caregiver’s ability to make and execute these choices is predicated on their ability to access to a wide spectrum of services and support. Encouraging caregivers to access services and supports is a vital part of helping caregivers be healthy. / Graduate

Background: Informal caregivers provide unpaid support to a family member, which has been shown to more positively affect their relatives’ health outcomes than equivalent paid caregivers. The provision of this support, however, comes at a cost to the carers’ health and wellbeing through meeting the demands of the caring role. Efforts have been made to alleviate these consequences through various forms of interventions aimed to enable the carers to meet these demands. The reported success of these interventions is varied in regards to their effectiveness; an argument supported by literature review papers on the subject that questions the methodologies and evaluations of these interventions. Rationale: There is a need to explore the ways to enhance the health and wellbeing of informal carers by means of a robust design and evaluation. This thesis reports a study, the aim of which is to provide information about how to reduce the negative effects of the carer role whilst enhancing the positive effects using an intervention developed using lived experience. Method: The self-care intervention was developed and piloted with those caring for a relative with bipolar disorder. This was achieved in three stages: (i) qualitative interviews with carers to explore and understand the role, (ii) developing the intervention informed by qualitative findings, and finally by (iii) piloting the intervention. Effectiveness of the intervention was determined using health and wellbeing outcomes, the results of which were compared to a control group who did not take part in the intervention. Results: A positive potential for psychoeducational, cognitive behavioural and mindfulness techniques in enhancing the health and wellbeing of those caring for a relative diagnosed with bipolar disorder was found. From the exploration of lived experience, “Being Bound” was elicited from the data representing the conflict between the detrimental effects of providing care and being unable to take respite or reprieve through guilt and anxiety. Conclusion: Professionals who work with family members, individually or as part of a family unit, should consider the benefits of targeted information for carers. Provision of information is not enough to engage the carer in the process of understanding their relative’s behaviours, but requires a process of interaction and personalisation. In contributing to existing research, the use of hermeneutic phenomenology provided new insight in to the experiences of those providing care. The outcome of the intervention pilot shows positive potential for the use of interventions beyond psychoeducation alone and the use of a self-care approach.

The general objectives of the study were to evaluate a social work support group programme with informal caregivers that aimed to enhance the quality of care provided to older persons in an urban and rural community setting in Namibia. In order to achieve the general objectives of the study, the following specific objectives were formulated: * To explore how informal caregiving situations in urban and rural communities lead to elder abuse and neglect. * To describe existing literature on the various factors that contribute to elder abuse and neglect within community settings. * To develop a support group programme for informal caregivers of older persons in urban and rural community settings that aimed at preventing elder abuse and neglect. * To implement and evaluate the effectiveness of the support group programme for informal caregivers that aimed at preventing elder abuse and neglect. The thesis consists of 5 sections: Section A consists of the problem statement, research objectives, central theoretical argument and the theoretical approaches that underpin the study. Furthermore, the research methodology, the definition of key concepts and the limitation of the study are presented. Section B contains four articles that together formed part of the research outcomes. Each article can function independently with it’s own objectives and distinctive content. However, each article is also a sub-project of the umbrella research study. Therefore, some of the data have to be repeated in different sections. The four articles are: Article 1: Informal caregiving, elder abuse and neglect in urban and rural areas of the Khomas region in Namibia: A needs assessment A needs assessment on informal caregiving situations and how it may lead to elder abuse and neglect of older persons from an urban and rural constituency in the Khomas region was explored. Data was collected through in-depth interviews with professional and community leaders. In addition, focus group discussions were held with older persons and informal caregivers in the urban and rural constituency. Article 2: Factors contributing to elder abuse and neglect in community settings In this article, a comprehensive review of the literature pertaining to the risk and protective factors to elder abuse and neglect was done. The ecological theory was worthwhile to describe the risk factors to elder abuse and neglect. Article 3: Designing a social work support group programme with informal caregivers of older people in Namibia A social work support group programme was developed for informal caregivers of older persons in community settings. The eight-week support group programme was developed based on a needs assessment and a comprehensive literature review, and included the following topics; the normal processes of aging, handling of difficult caregiving situations, caregiver stress, self-care of the caregiver, elder abuse and neglect and caregiver grief and loss. The planning model for group work was also utilised to design the group. Article 4: Evaluation of the effectiveness of a support group programme with informal caregivers to prevent elder abuse and neglect An eight-week support group programme with ten female informal caregivers from an urban group and twelve informal caregivers from a rural group setting was implemented and evaluated. Standardized measuring instruments that assessed the outcome of the group at pre-test, post-test and postponed post-test were the Zarit Burden Interview (ZBI), Potentially Harmful Behaviour (PHB) scale and the Caregiver Abuse Screen (CASE). The Group Engagement Measure (GEM) assessed the group processes at the fourth, sixth and eight group sessions. In addition, open-ended questions were used to collect qualitative data. The quantitative and qualitative evaluations indicated that both the urban and rural groups gained knowledge on aging and caregiving, and caregivers acquired vital qualities such as patience, compassion and communication skills. The process evaluation showed that caregivers from the urban group were more engaged in the group process than the rural group. Elder abuse was underreported in the study, while personal stress of caregivers reduced significantly because of the intervention. Section C consists of the summary of the most important findings and conclusions to the research study. In addition recommendations are provided. Section D consists of the annexures to the research report, such as the measuring instruments and interview schedules used for data collection. Section E contains a consolidated list of references. / PhD (Social Work), North-West University, Potchefstroom Campus, 2014

Bakgrund:   Allt fler människor vårdas i sina hem och det anses ofta vara en betydelsefull plats för både sjuka och anhöriga. När sjukdom drabbar en person spelar de anhöriga en viktig roll. De får ta ett stort ansvar gentemot den sjuke och för vården i hemmet. Det är trots detta fortfarande sjuksköterskans uppgift att främja patientens och familjens upplevelse av livskvalitet och välbefinnande. Allas behov behöver tillgodoses för att vården i hemmet ska vara adekvat. Syfte: Att beskriva anhörigas upplevelse av att vårda en sjuk familjemedlem i hemmet. Metod: Denna litteraturöversikt baserades på tio vetenskapliga artiklar. Dessa hämtades från databaserna CINAHL plus with Full text och PubMed. Familjefokuserad omvårdnad var den teoretiska referensram som kom att diskuteras utifrån litteraturöversiktens resultat. Den handlar om familjens betydelse för patientens upplevelse av hälsa och sjukdom. Även de vårdvetenskapliga konsensusbegreppen behandlades. Resultat: Det framkom fyra områden i resultatet. Det första var känslomässig påverkan på den informella vårdaren, vilket berörde de tankar och känslor som uppkom när någon tog sig an vårdarrollen. Det andra var social påverkan, som handlade om hur de anhörigas sociala liv påverkades när de tog sig an den informella vårdarrollen. Det tredje var förändringar, vilket berörde kontrasterna mellan hur livet var innan sjukdom drabbade familjen och hur livet blev efter sjukdomen inträdde. Det sista området var information och stöd som omfattade det som familjen ansåg sig behöva hjälp med.                                                                                          Diskussion: De två områdena känslomässig påverkan på den informella vårdaren och social påverkan diskuterades utifrån den familjefokuserade omvårdnaden och de vårdvetenskapliga konsensusbegreppen. / Background: Nowadays more people are being cared for in the home which is often considered an important place for both the patient and relatives. When illness hits one family member the relatives plays an essential role. They have to take responsibility for their sick family member and for the home nursing. Nevertheless, it is still the nurse´ task to ensure that the patient and the family experience quality of life and wellbeing. Aim: To describe the family experience of caring for a sick family member at home. Method: This literature review was based on ten scientific articles. These were taken from the databases CINAHL Plus with Full Text and PubMed. Family focused nursing was the theoretical framework that the literature review was proceeded from. Family focused nursing is about the family importance to the patient experience of health and illness. The consensus concepts of caring science were also discussed.   Results: Four themes appeared in the result. The first one was emotional impact on the informal caregiver. That theme includes thoughts and feelings that arise when someone takes on the caregiving role. The second one was social impact which is about the family members' social lives and how the informal caregiving role affects them. The third one was changes and that theme is about the contrast between what life was like before the illness struck their family and how life became after the disease entered. The final theme was information and support which included the areas where the family required more help. Discussions:  Emotional impact on the informal caregiver and social impacts were discussed on the basis of family focused nursing and the consensus concepts of caring science.

The needs of the informal caregiver can be difficult to determine apart from those related to caring for the terminally ill loved one. Often, informal caregivers' individual needs are lost because of their day-to-day responsibility and care of their terminally ill loved one. The purpose of this project was to discover the characteristics of informal caregivers of the terminally ill. An integrated literature review was conducted using the Fineout-Overhalt, Melnyk, Stillwell, and Williamson's (2010) analytical approach to reviewing the evidence. The approach consisted of 7 levels for evaluating the hierachy of evidence. Inclusion criteria were studies limited from January 2004 to October 2015, English language, and full text. A total of 22 studies were reviewed and categorized according to 1 of the 7 hierachial levels, and findings related to the characteristics of informal caregivers were summarized at each appropriate level. Characteristics of informal caregivers were described regarding sociodemogrphics, such as age, gender, relationship with family members, financial status, and educational level. Characteristics of informal caregivers were discussed in relationship to the terminally ill loved one. The evidence did not concentrate on who the informal caregiver was without assessing their relationship to the terminally ill patient. It is recommended that a mixed-method approach be conducted to indentify characteristics of informal caregivers outside of their relationship with the terminally ill. Gaining a new perspective about the characteristics of informal caregivers for the terminally ill patient would help health care providers to more effectively meet their needs independent of the needs of the terminally ill loved one.

Bakgrund: Den äldre populationen är växande i Sverige och anhörigvårdarnas insatser ökar i omfattning. Detta innebär förändringar i anhörigvårdarnas livssituation och kan upplevas både positivt och negativt. För att få ett väl fungerande vård- och omsorgssystem är det viktigt att få en övergripande bild av anhörigvårdarnas erfarenheter. Detta för att kunna främja och bibehålla deras livskvalitet. Syfte: Syftet med studien är att studera äldre anhörigvårdares erfarenheter av att vårda en närstående. Metod: Litteraturstudie som är baserad på 9 vetenskapliga artiklar. Både kvalitativa och kvantitativa artiklar har använts och dessa har granskats och analyserats. Kriterierna för urvalet var att de skulle innefatta människor över 60 års ålder, vara publicerade efter 2001 samt skrivna i industriländer som kan passa in på Sveriges sjukvård. Resultat: Resultatet beskriver anhörigvårdarnas erfarenhet av att vårda en närstående som en förändring som påverkar även deras livssituation. Studien presenteras i två kategorier med sju underkategorier: Anhörigvårdarens livssituation och Den viktiga interaktionen med omvärlden. Diskussion: Erfarenheterna av att vara anhörigvårdare var av olika karaktär och påverkades av yttre och inre faktorer. Där en del anhörigvårdare kände en förlust av egen tid upplevde andra en ökad samhörighet med den närstående. Att bemästra sin roll som anhörigvårdare verkade till stor del grunda sig i personens inneboende egenskaper, även det sociala nätverk anhörigvårdaren hade upplevdes betydelsefullt. Benner och Wrubels omsorgsteori låg till grund för diskussionen och vissa begrepp förankrades: omsorg, person, situation, kontext, stress, bemästrande, livscykel, hälsa (välbefinnande) och ohälsa.

The general objectives of the study were to evaluate a social work support group programme with informal caregivers that aimed to enhance the quality of care provided to older persons in an urban and rural community setting in Namibia. In order to achieve the general objectives of the study, the following specific objectives were formulated: * To explore how informal caregiving situations in urban and rural communities lead to elder abuse and neglect. * To describe existing literature on the various factors that contribute to elder abuse and neglect within community settings. * To develop a support group programme for informal caregivers of older persons in urban and rural community settings that aimed at preventing elder abuse and neglect. * To implement and evaluate the effectiveness of the support group programme for informal caregivers that aimed at preventing elder abuse and neglect. The thesis consists of 5 sections: Section A consists of the problem statement, research objectives, central theoretical argument and the theoretical approaches that underpin the study. Furthermore, the research methodology, the definition of key concepts and the limitation of the study are presented. Section B contains four articles that together formed part of the research outcomes. Each article can function independently with it’s own objectives and distinctive content. However, each article is also a sub-project of the umbrella research study. Therefore, some of the data have to be repeated in different sections. The four articles are: Article 1: Informal caregiving, elder abuse and neglect in urban and rural areas of the Khomas region in Namibia: A needs assessment A needs assessment on informal caregiving situations and how it may lead to elder abuse and neglect of older persons from an urban and rural constituency in the Khomas region was explored. Data was collected through in-depth interviews with professional and community leaders. In addition, focus group discussions were held with older persons and informal caregivers in the urban and rural constituency. Article 2: Factors contributing to elder abuse and neglect in community settings In this article, a comprehensive review of the literature pertaining to the risk and protective factors to elder abuse and neglect was done. The ecological theory was worthwhile to describe the risk factors to elder abuse and neglect. Article 3: Designing a social work support group programme with informal caregivers of older people in Namibia A social work support group programme was developed for informal caregivers of older persons in community settings. The eight-week support group programme was developed based on a needs assessment and a comprehensive literature review, and included the following topics; the normal processes of aging, handling of difficult caregiving situations, caregiver stress, self-care of the caregiver, elder abuse and neglect and caregiver grief and loss. The planning model for group work was also utilised to design the group. Article 4: Evaluation of the effectiveness of a support group programme with informal caregivers to prevent elder abuse and neglect An eight-week support group programme with ten female informal caregivers from an urban group and twelve informal caregivers from a rural group setting was implemented and evaluated. Standardized measuring instruments that assessed the outcome of the group at pre-test, post-test and postponed post-test were the Zarit Burden Interview (ZBI), Potentially Harmful Behaviour (PHB) scale and the Caregiver Abuse Screen (CASE). The Group Engagement Measure (GEM) assessed the group processes at the fourth, sixth and eight group sessions. In addition, open-ended questions were used to collect qualitative data. The quantitative and qualitative evaluations indicated that both the urban and rural groups gained knowledge on aging and caregiving, and caregivers acquired vital qualities such as patience, compassion and communication skills. The process evaluation showed that caregivers from the urban group were more engaged in the group process than the rural group. Elder abuse was underreported in the study, while personal stress of caregivers reduced significantly because of the intervention. Section C consists of the summary of the most important findings and conclusions to the research study. In addition recommendations are provided. Section D consists of the annexures to the research report, such as the measuring instruments and interview schedules used for data collection. Section E contains a consolidated list of references. / PhD (Social Work), North-West University, Potchefstroom Campus, 2014

Bakgrund: Hemsjukvård är en växande och skiftande vårdform i Europa. De närståendes omvårdnadsinsatser är ofta avgörande för en fungerande hemsjukvård. Närståendevård kan samtidigt medföra risker för de närståendes hälsa. Styrdokument för hälso- och sjukvården betonar vikten av patientens och de närståendes delaktighet i vårdens utformning och utförande. Hemmet utgör en speciell vårdkontext, som visats påverka vårdpersonalens och patienternas upplevelser - troligen också de närståendes. Syfte: Att, i en europeisk kontext, beskriva de närståendes upplevelser av delaktighet i hemsjukvård. Metod: Litteraturöversikt av kvalitativa vetenskapsartiklar. Tre elektroniska databaser genomsöktes och elva studier, utgivna mellan 2013 och 2018, inkluderades. Genom kvalitativ dataanalys identifierades teman som präglade de närståendes upplevelser av delaktighet med hemsjukvården. Resultat: Analysen fann tre teman: de närstående utför omvårdnadsprocesser, de närstående griper efter hemsjukvården, samt vårdarnas makt över hopp och förtvivlan. Diskussion: Resultaten diskuterades utifrån Andersheds och Ternestedts teori om närståendes delaktighet. Studier om hopp och fasta vårdkontakter satte resultaten i kontext. De närståendes upplevda ansvar och resurser diskuterades som förutsättningar för delaktighet. / Background: Home health care comprises an increasing and diverse range of services throughout Europe. In order to work, these services often rely on care performed by informal caregivers. Informal care can entail risks to the relatives’ health. Legal and policy documents stress the importance of patients’ and relatives’ participation in health care decisions and delivery. The home as a care context has been found to influence the patients’ and health professionals’ experiences, and should be studied also from the relatives’ perspective. Aim: To describe informal caregivers’ experiences of participation in home health care, in a European context. Method: Review of qualitative literature. Three electronic databases were searched, and eleven studies, published between 2013 and 2018, were identified for inclusion. Through qualitative content analysis, themes that defined the informal caregivers’ experiences of participation were identified. Results: Three themes were formulated: relatives perform care processes, relatives grasp at the home health care service, and care professionals mediate hope and despair. Discussion: The results were discussed in relation to Andershed’s and Ternestedt’s theory of relatives’ involvement. Studies of hope and case management contextualized the findings. The informal caregivers’ perceived responsibility and resources were discussed as conditions of participation.