Health and quality of care from older peoples' and formal caregivers' perspective

Aim: The overall aim of this thesis was to gain a deeper understanding of older people's view of health and care while dependent on community care. Furthermore to describe and compare formal caregivers' perceptions of quality of care, working conditions, competence, general health, and factors associated with quality of care from the caregivers' perspective. Method: Qualitative interviews were conducted with 19 older people in community care who were asked to describe what health and ill health((I), good and bad care meant for them (II). Data were analyzed using content analysis (I) and a phenomenological analysis (II). The formal caregivers; 70 nursing assistants (NAs) 163 enrolled nurses (ENs) and 198 registered nurses (RNs), answered a questionnaire consisting of five instruments: quality of care from the patient's perspective modified to formal caregivers, creative climate questionnaire, stress of conscience, health index, sense of coherence and items on education and competence (III). Statistical analyses were performed containing descriptive statistics, and comparisons between the occupational groups were made using Kruskal-Wallis ANOVA, Mann-Whitney U-test and Pearson's Chi-square test (III). Pearson's  product moment correlation analysis and multiple regression analysis were performed studying the associations between organizational climate, stress of conscience, competence, general health and sense of coherence with quality of care (IV). Results: The older people's health and well-being were related to their own ability to adapt to and compensate for their disabilities and was described as negative and positive poles of autonomy vs. dependence, togetherness vs. being an onlooker, security vs. insecurity and tranquility vs. disturbance (I).  The meaning of good care (II) was that the formal caregivers respected the older people as unique individuals, having the opportunity to live their lives as usual and receiving a safe and secure care. Good care could be experienced when the formal caregivers had adequate knowledge and competence in caring for older people, adequate time and continuity in the care organization (II). Formal caregivers reported higher perceived quality of care in the dimensions medical-technical competence and physical-technical conditions than in identity-oriented approach and socio-cultural atmosphere (III). In the organizational climate three of the dimensions were close to the value of a creative climate and in seven near a stagnant climate. The formal caregivers reported low rate of stress of conscience. The RNs reported to a higher degree than the NAs/ENs a need to gain more knowledge, but the NAs and the ENs more often received training during working hours. The RNs reported lower emotional well-being than the NAs/ENs (III). The formal caregivers' occupation, organizational climate and stress of conscience were associated with perceived quality of care (IV). Implications: The formal caregivers should have an awareness of the importance of kindness and respect, supporting the older people to retain control over their lives. The nursing managers should employ highly competent and adequate numbers of skilled formal caregivers, organize formal caregivers having round the clock continuity. Improvements of organizational climate and stress of conscience are of importance for good quality of care.

Glädje i vårdandets värld

Föreliggande vårdvetenskapliga studie har som syfte att avtäcka och synliggöra glädjesom idé i vårdandets värld. Glädje sammanbinds med vårdandet genom kärleken somden tongivande kraften hos glädje. Vårdandets sak har genom historien alltid varit attlindra lidande och att tjäna liv och hälsa i en anda av kärlek och barmhärtighet. Dennastudie om glädje i vårdandet har en övergripande idéhistorisk inriktning och resultatetsammanställs i form av ett idémönster. Tolkningen sker genom en hermeneutisk ansatsmed fokus på förståelse av själva vårdandet. För att djupare förstå glädje, dessursprungsidé, väsen och uttrycksformer granskas begreppet ’glädje’ och de näraliggandebegreppen ’glad’ och ’ljus’ i etymologiska ordböcker samt i svenska, engelska ochlatinska ordböcker. Som stöd för tolkningen används klassiska texter innehållandefilosofers tankar om glädje. Glädje som idé glimtar fram i form av ett sjufaldigtmönster. Detta mönster innehåller särdrag hos glädje och det hjärtas natur somrespektive särdrag förverkligas i. I andlig mening utgör hjärtat livets medelpunkt ochkänslornas hemvist. Mönstret bildar bakgrund och blir vägledande vid den hermeneutiska läsningen omglädje, så som den framträder i berättelser om vårdande under åren 1900–1933. Dehistoriska källorna utgörs av facktidskriften Svensk sjukskötersketidning, böcker medberättelser om vårdande, arkivmaterial samt läroböcker om vårdarbete. Resultatetmynnar ut i ett idémönster, där idéer om det som gör glädje verksamt som vårdandeframträder. Dessa är det sanna hjärtats rena glädje – kärlek, glädje är ett kärleksbevis.Det brinnande hjärtats djupa glädje – livsglädje, glädje inspirerar och genererar kraft.Det bärande hjärtats glansfulla glädje – generositet, glädje är en gåva till den andra medlöfte om hjälp. Det inbjudande hjärtats glittrande glädje – gemenskap, glädje inbjudertill gemenskap. Det upprymda hjärtats uppsluppna glädje – integration, glädje gör attmänniskan kan glömma sitt lidande och närma sig den hon önskar vara. Detstämningsfulla hjärtats högtidliga glädje – bevärdigande, glädje skapar en anda ochatmosfär där människan upplever sig hedrad. Det fridfulla hjärtats stora glädje –räddning, en glädje visar sig när människan har erhållit det som kan begäras av gott ochundsluppet ont och är förnöjd med sin levnads lott. Förhoppningen är att dennagrundforskning ska öppna för ett nytt seende som kan leda till att glädjeuppmärksammas i vårdandets värld och artikuleras där.

Pregnant Adolescents in Vietnam : Social context and health care needs

Background: The number of childbearing adolescents in Vietnam is relatively low but they are more prone to experience adverse outcome than adult women. Reports of increasing rates of abortion and prevalence of STIs including HIV among youth indicate a need to improve services and counselling for these groups. Midwives are key persons in the promotion of young people’s sexual and reproductive health in Vietnam. Aim: The overall aim of this thesis is to describe the prevalence and outcome of adolescent pregnancies in Vietnam (I), to explore the social context and health care seeking behavior of pregnant adolescents (II), as well as to explore the perspectives of health care providers and midwifery students regarding adolescent sexuality and reproductive health service needs (III, IV). Methods: The studies were conducted from 2002 to 2005, combining qualitative and quantitative research methods. A population based prospective survey was used to estimate rates and outcomes of adolescent pregnancies (I). Pregnant and newly delivered adolescents’ experiences of childbearing and their encounters with health care providers were studied using qualitative interviews (II). Health care providers’ perspective on adolescent sexual and reproductive health (ASRH) and views on how to improve the quality of abortion care was explored in focus group discussions (FGD). The values and attitudes of midwifery students about ASRH were investigated using questionnaires and interviews (IV). Descriptive statistics was used to analyse quantitative data (I, IV) and content analysis were applied for qualitative data (II, III, and IV). Findings: Adolescent birth rate was similar to previously reported in Vietnam but lower when compared to other Asian countries. The incidence of stillborn among adolescents was higher than for women in higher reproductive ages. The proportion of preterm deliveries was 20 % of all births, higher than previous findings from Vietnam. About 2 % of the deliveries were home deliveries, more common among women with low education, belonging to ethnic minority and/or living in mountainous areas (I). Ambivalence facing motherhood, pride and happiness but also worries and lack of self-confidence emerged as themes from the interviews; and experience of ‘being in the hands of others’ in a positive, caring sense but also in a sense of subordination in relation to husband, family and health care providers (II). Health care providers at abortion clinics and midwifery students generally disapproved of pre-marital sex, but had a pragmatic view on the need for contraceptive services and counselling to reduce the burden of unwanted pregnancies and abortions for young women. Providers and midwifery students expressed a need for training on ASRH issues (III, IV). Conclusion: Cultural norms and gender inequity make pregnant adolescent women in Vietnam vulnerable to sexual and reproductive health risks. Health care providers experience ethical dilemmas while counselling unmarried adolescents who come for abortion and this has a negative impact on the quality of care. Integrated ASRH in education and training programmes for health care providers, including midwives, as well as continued in-service training on these issues are suggested to improve reproductive health care services in Vietnam.

Violence and reproductive health preceding flight from war : accounts from Somali born women in Sweden

Background: Political violence and war are push factors for migration and social determinants of health among migrants. Somali migration to Sweden has increased threefold since 2004, and now comprises refugees with more than 20 years of war experiences. Health is influenced by earlier life experiences with adverse sexual and reproductive health, violence, and mental distress being linked. Adverse pregnancy outcomes are reported among Somali born refugees in high-income countries. The aim of this study was to explore experiences and perceptions on war, violence, and reproductive health before migration among Somali born women in Sweden. Method: Qualitative semi-structured individual interviews were conducted with 17 Somali born refugee women of fertile age living in Sweden. Thematic analysis was applied. Results: Before migration, widespread war-related violence in the community had created fear, separation, and interruption in daily life in Somalia, and power based restrictions limited access to reproductive health services. The lack of justice and support for women exposed to non-partner sexual violence or intimate partner violence reinforced the risk of shame, stigmatization, and silence. Social networks, stoicism, and faith constituted survival strategies in the context of war. Conclusions: Several factors reinforced non-disclosure of violence exposure among the Somali born women before migration. Therefore, violence-related illness might be overlooked in the health care system. Survival strategies shaped by war contain resources for resilience and enhancement of well-being and sexual and reproductive health and rights in receiving countries after migration.

Automatic spiral analysis for objective assessment of motor symptoms in Parkinson's disease

A challenge for the clinical management of advanced Parkinson’s disease (PD) patients is the emergence of fluctuations in motor performance, which represents a significant source of disability during activities of daily living of the patients. There is a lack of objective measurement of treatment effects for in-clinic and at-home use that can provide an overview of the treatment response. The objective of this paper was to develop a method for objective quantification of advanced PD motor symptoms related to off episodes and peak dose dyskinesia, using spiral data gathered by a touch screen telemetry device. More specifically, the aim was to objectively characterize motor symptoms (bradykinesia and dyskinesia), to help in automating the process of visual interpretation of movement anomalies in spirals as rated by movement disorder specialists. Digitized upper limb movement data of 65 advanced PD patients and 10 healthy (HE) subjects were recorded as they performed spiral drawing tasks on a touch screen device in their home environment settings. Several spatiotemporal features were extracted from the time series and used as inputs to machine learning methods. The methods were validated against ratings on animated spirals scored by four movement disorder specialists who visually assessed a set of kinematic features and the motor symptom. The ability of the method to discriminate between PD patients and HE subjects and the test-retest reliability of the computed scores were also evaluated. Computed scores correlated well with mean visual ratings of individual kinematic features. The best performing classifier (Multilayer Perceptron) classified the motor symptom (bradykinesia or dyskinesia) with an accuracy of 84% and area under the receiver operating characteristics curve of 0.86 in relation to visual classifications of the raters. In addition, the method provided high discriminating power when distinguishing between PD patients and HE subjects as well as had good test-retest reliability. This study demonstrated the potential of using digital spiral analysis for objective quantification of PD-specific and/or treatment-induced motor symptoms.

Young peoples’ entrance to the workplace : Introduction to occupational health and safety

Negative outcomes of a poor work environment are more frequent among young workers. The aim of the current study was to study former pupils’ conditions concerning occupational health and safety by investigating the workplaces’, safety climate, the degree of implementation of SWEM and the their introduction programs. Four branches were included in the study: Industrial, Restaurant, Transport and Handicraft, specialising in wood. Semi-structured dialogues were undertaken with 15 employers at companies in which former pupils were employed. They also answered a questionnaire about SWEM. Former pupils and experienced employees were upon the same occasion asked to fill in a questionnaire about safety climate at the workplace. Workplace introduction programs varied and were strongly linked to company size. Most of the former pupils and experienced employees rated the safety climate at their company as high, or good. Employers in three of the branches rated the SWEM implemented at their workplaces to be effective. The Industry companies, which had the largest workplaces, gave the most systematic and workplace introduction for new employees. There are no results from this study explaining the fact that young workers have a higher risk for workplace accidents.

Exploring self-rated health among adolescents : a think-aloud study

BACKGROUND: Despite extensive use of self-rated health questions in youth studies, little is known about what such questions capture among adolescents. Hence, the aim of this study was to explore how adolescents interpret and reason when answering a question about self-rated health. METHODS: A qualitative study using think-aloud interviews explored the question, "How do you feel most of the time?", using five response options ("Very good", "Rather good", "Neither good, nor bad", "Rather bad", and "Very bad"). The study involved 58 adolescents (29 boys and 29 girls) in lower secondary school (7th grade) and upper secondary school (12th grade) in Sweden. RESULTS: Respondents' interpretations of the question about how they felt included social, mental, and physical aspects. Gender differences were found primarily in that girls emphasized stressors, while age differences were reflected mainly in the older respondents' inclusion of a wider variety of influences on their assessments. The five response options all demonstrated differences in self-rated health, and the respondents' understanding of the middle option, "Neither good, nor bad", varied widely. In the answering of potential sensitive survey questions, rationales for providing honest or biased answers were described. CONCLUSIONS: The use of a self-rated health question including the word 'feel' captured a holistic view of health among adolescents. Differences amongst response options should be acknowledged when analyzing self-rated health questions. If anonymity is not feasible when answering questions on self-rated health, a high level of privacy is recommended to increase the likelihood of reliability.

Health system context and implementation of evidence-based practices-development and validation of the Context Assessment for Community Health (COACH) tool for low- and middle-income settings

Background: The gap between what is known and what is practiced results in health service users not benefitting from advances in healthcare, and in unnecessary costs. A supportive context is considered a key element for successful implementation of evidence-based practices (EBP). There were no tools available for the systematic mapping of aspects of organizational context influencing the implementation of EBPs in low- and middle-income countries (LMICs). Thus, this project aimed to develop and psychometrically validate a tool for this purpose. Methods: The development of the Context Assessment for Community Health (COACH) tool was premised on the context dimension in the Promoting Action on Research Implementation in Health Services framework, and is a derivative product of the Alberta Context Tool. Its development was undertaken in Bangladesh, Vietnam, Uganda, South Africa and Nicaragua in six phases: (1) defining dimensions and draft tool development, (2) content validity amongst in-country expert panels, (3) content validity amongst international experts, (4) response process validity, (5) translation and (6) evaluation of psychometric properties amongst 690 health workers in the five countries. Results: The tool was validated for use amongst physicians, nurse/midwives and community health workers. The six phases of development resulted in a good fit between the theoretical dimensions of the COACH tool and its psychometric properties. The tool has 49 items measuring eight aspects of context: Resources, Community engagement, Commitment to work, Informal payment, Leadership, Work culture, Monitoring services for action and Sources of knowledge. Conclusions: Aspects of organizational context that were identified as influencing the implementation of EBPs in high-income settings were also found to be relevant in LMICs. However, there were additional aspects of context of relevance in LMICs specifically Resources, Community engagement, Commitment to work and Informal payment. Use of the COACH tool will allow for systematic description of the local healthcare context prior implementing healthcare interventions to allow for tailoring implementation strategies or as part of the evaluation of implementing healthcare interventions and thus allow for deeper insights into the process of implementing EBPs in LMICs.

Internal validity of the Swedish Maternal Health Care Register

Background: The Swedish Maternal Health Care Register (MHCR) is a national quality register that has been collecting pregnancy, delivery, and postpartum data since 1999. A substantial revision of the MHCR resulted in a Web-based version of the register in 2010. Although MHCR provides data for health care services and research, the validity of the MHCR data has not been evaluated. This study investigated degree of coverage and internal validity of specific variables in the MHCR and identified possible systematic errors. Methods: This cross-sectional observational study compared pregnancy and delivery data in medical records with corresponding data in the MHCR. The medical record was considered the gold standard. The medical records from nine Swedish hospitals were selected for data extraction. This study compared data from 878 women registered in both medical records and in the MHCR. To evaluate the quality of the initial data extraction, a second data extraction of 150 medical records was performed. Statistical analyses were performed for degree of coverage, agreement and correlation of data, and sensitivity and specificity. Results: Degree of coverage of specified variables in the MHCR varied from 90.0% to 100%. Identical information in both medical records and the MHCR ranged from 71.4% to 99.7%. For more than half of the investigated variables, 95% or more of the information was identical. Sensitivity and specificity were analysed for binary variables. Probable systematic errors were identified for two variables. Conclusions: When comparing data from medical records and data registered in the MHCR, most variables in the MHCR demonstrated good to very good degree of coverage, agreement, and internal validity. Hence, data from the MHCR may be regarded as reliable for research as well as for evaluating, planning, and decision-making with respect to Swedish maternal health care services.

The fall descriptions and health characteristics of older adults with hip fracture : a mixed methods study

Background: In light of the multifactorial etiology of fall-related hip fracture, knowledge of fall circumstances may be especially valuable when placed in the context of the health of the person who falls. We aimed to investigate the circumstances surrounding fall-related hip fractures and to describe fall circumstances in relation to participants' health and functional characteristics. Methods: The fall circumstances of 125 individuals (age >= 50 years) with hip fracture were investigated using semi-structured interviews. Data concerning participants' health (comorbidities and medications) and function (self-reported performance of mobility, balance, personal activities of daily living and physical activity, previous falls and hand grip strength) were collected via medical records, questionnaires and dynamometry. Using a mixed methods design, both data sets were analysed separately and then merged in order to provide a comprehensive description of fall events and identify eventual patterns in the data. Results: Fall circumstances were described as i) Activity at the time of the fall: Positional change (n = 24, 19%); Standing (n = 16, 13%); Walking (n = 71, 57%); Balance challenging (n = 14, 11%) and ii) Nature of the fall: Environmental (n = 32, 26%); Physiological (n = 35, 28%); Activity-related indoor (n = 8, 6%) and outdoor (n = 8, 6%); Trips and slips on snow (n = 20, 16%) and in snow-free conditions (n = 12, 10%) and Unknown (n = 10, 8%). We observed the following patterns regarding fall circumstances and participants' health: those who fell i) during positional change had the poorest functional status; ii) due to environmental reasons (indoors) had moderate physical function, but high levels of comorbidity and fall risk increasing medications; iii) in snow-free environments (outdoors) appeared to have a poorer health and functional status than other outdoor groups. Conclusions: Our findings indicate that patterns exist in relation to the falls circumstances and health characteristics of people with hip fracture which build upon that previously reported. These patterns, when verified, can provide useful information as to the ways in which fall prevention strategies can be tailored to individuals of varying levels of health and function who are at risk for falls and hip fracture.

Violence and reproductive health preceding flight from war : accounts from Somali born women in Sweden

Background: Political violence and war are push factors for migration and social determinants of health among migrants. Somali migration to Sweden has increased threefold since 2004, and now comprises refugees with more than 20 years of war experiences. Health is influenced by earlier life experiences with adverse sexual and reproductive health, violence, and mental distress being linked. Adverse pregnancy outcomes are reported among Somali born refugees in high-income countries. The aim of this study was to explore experiences and perceptions on war, violence, and reproductive health before migration among Somali born women in Sweden. Method: Qualitative semi-structured individual interviews were conducted with 17 Somali born refugee women of fertile age living in Sweden. Thematic analysis was applied. Results: Before migration, widespread war-related violence in the community had created fear, separation, and interruption in daily life in Somalia, and power based restrictions limited access to reproductive health services. The lack of justice and support for women exposed to non-partner sexual violence or intimate partner violence reinforced the risk of shame, stigmatization, and silence. Social networks, stoicism, and faith constituted survival strategies in the context of war. Conclusions: Several factors reinforced non-disclosure of violence exposure among the Somali born women before migration. Therefore, violence-related illness might be overlooked in the health care system. Survival strategies shaped by war contain resources for resilience and

What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. DESIGN: Semistructured qualitative interviews analysed using content analysis. SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden. PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories. CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

Unlicensed personnel administering medications to older persons living at home : a challenge for social and care services

BACKGROUND: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge. AIM: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care. METHODS: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis. RESULTS: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality. CONCLUSIONS: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. IMPLICATIONS FOR PRACTICE: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.

Older people's experience of utilisation and administration of medicines in a health- and social care context

BACKGROUND: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care. AIM: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care. DESIGN: A qualitative descriptive study. METHODS: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used. FINDINGS: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process. CONCLUSIONS: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine. RELEVANCE TO CLINICAL PRACTICE: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health- and social care delivery is efficient and improve outcome for the recipient of care.

Palliativ omvårdnad i hemmet - de anhörigas upplevelse av delaktighet : En litteraturstudie

Bakgrund: Tack vare en mer avancerad hemsjukvård har den palliativa vården utvecklats, vilket gör det möjligt för fler människor att dö i det egna hemmet. Palliativ vård handlar inte endast om patienten, utan involverar även de anhöriga. Det övergripande målet för palliativ vård är att patienten och den anhörige upplever god livskvalitet till livets slut. De anhörigas närvaro är betydelsefull, inte endast för patienten utan även för vårdarna. De anhöriga befinner sig i en mycket påfrestande situation och det är viktigt att vårdare har kunskap om vad de anhöriga upplever och hur man kan stötta de anhöriga i deras situation. Syfte: Att belysa anhörigas upplevelser av delaktighet i samband med palliativ omvårdnad i hemmet. Metod: En litteraturstudie baserad på 11 vetenskapliga artiklar av kvalitativ ansats. Resultat: 2 kategorier framkom ur studien. Delaktighet ger anhöriga upplevelsen av att få vardagen att fungera och Anhörigas delaktighet bidrar till personcentrerad vård. Det blev en drastisk förändring i livet för de anhöriga. Det var inte bara hemmet som förändras i och med all teknisk utrustning och hjälpmedel som patienten behövde. De anhörigas livsförändringar gjorde att det sociala livet fick lida. Tankar kring existentiella frågor dök upp när man levde så nära inpå döden och det var viktigt för de anhöriga att vårdarna kunde se och lyssna även på deras behov. En god kommunikation var viktigt för att de anhöriga skulle våga prata om sina egna behov, tankar och åsikter. Slutsats: Det viktigaste för de anhöriga var att kommunikationen, stödet och informationen fungerade mellan alla parter. Fungerade dessa delar så byggdes en god relation mellan parterna och man fick en god tillit till vården. Samarbetet blev bättre och de anhöriga kände sig som en i teamet.