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.

Formal caregivers' perceptions of quality of care for older people : associating factors

Background: Despite the growing number of studies concerning quality of care for older people, there is a lack of studies depicting factors associated with good quality of care from the formal caregivers' perspective. The aim was to describe formal caregivers' perceptions of quality of care for older people in the community and explore factors associated with these perceptions. In total, 70 nursing assistants, 163 enrolled nurses and 198 registered nurses from 14 communities in central Sweden participated in the study. They filled out the following questionnaires: a modified version of Quality from the Patient's Perspective, Creative Climate Questionnaire, Stress of Conscience Questionnaire, items regarding education and competence, Health Index and Sense of coherence questionnaire. The overall response rate was 57 % (n = 431). Results: In the perceived reality of quality of care respondents assessed the highest mean value in the dimension medical-technical competence and physical technical conditions and lower values in the dimensions; identity-oriented approach, socio-cultural atmosphere and in the context specific dimension. The caregivers estimated their competence and health rather high, had lower average values in sense of coherence and organizational climate and low values in stress of conscience. Conculsions: The PR of quality of care were estimated higher among NA/ENs compared to RNs. Occupation, organizational climate and stress of conscience were factors associated with quality of care that explained 42 % of the variance. Competence, general health and sense of coherence were not significantly associated to quality of care. The mentioned factors explaining quality of care might be intertwined and showed that formal caregivers' working conditions are of great importance for quality of care.

Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Can humming caregivers´ facilitate feeding during mealtime situations with persons with dementia? A qualitative study

Background. ‘Music Therapeutic Caregiving’, defined as when caregivers’ sing for or together with persons with dementia care situations, has been shown to facilitate the caring situation, and enhance positive and decrease negative expressions in persons with dementia. No studies about singing during mealtimes have been conducted, and this project was designed to elucidate this. However, since previous studies have shown that there is a risk that persons with dementia will start to sing along with the caregiver, the caregiver in this study hummed such that the person with dementia did not sing instead of eat. Aim. To describe professional caregivers’ experiences of humming during meal time while feeding persons with dementia. Method. An intervention with caregivers humming was implemented during lunch time. Focus group interviews were conducted to fetch the caregivers experiences. Qualitative content analysis was used to analyse the interviews. Results. The caregivers described that humming disseminated relaxation and joy, and awakened memories about the songs hummed which encouraged the persons with the dementia to join in the songs. They also described that humming seemed to make the persons with dementia associate with mealtime and could make them eat more. However it also revealed suspiciousness and agitation from the persons with dementia. Conclusion. Humming during mealtime revealed mainly positive as well as some negative influences. More and larger studies are needed to be able to draw general conclusions.

Evaluation of communication behavior in persons with dementia during caregivers’ singing

The number of persons with dementia (PWD) is increasing rapidly worldwide. Cognitive impairments and communication difficulties are common among PWD. Therefore, gaining mutual togetherness in caring relation between PWD and their caregivers is important. This study was to investigate the effects of music therapeutic care (MTC) during morning care situations on improving verbal and nonverbal communication behaviors in people with dementia. An observation study with 10 PWD participating. Videotaped interactions (VIO) between PWD and their caregivers were conducted during eight weekly sessions, four recordings consisted of usual morning care and four recordings were of morning care with MTC intervention. The Verbal and Nonverbal Interaction Scale was used to analyze the recorded interactions at a later time. The unsociable verbal variable Cursing decreased significantly (P=.037) during MTC when compared with the baseline measurement. A significant (P=.000) reduction was observed for the unsociable nonverbal variable Does not respond to question. MTC significantly (P=.01) increased the mean score for the sociable nonverbal variable – Calm – relaxed. For sociable verbal communication, significant differences were observed for the variables Use coherent communication (P=.012), Use relevant communication (P=.009), Responds to questions (P=.000), Humming (P=.004), Singing (P=.000). MTC during morning care situations can be an effective non-pharmacological treatment, as well as nursing intervention in order to improve sociable communication behaviors, as well as reduce unsociable communication behaviors of PWDs

Reactions of Persons with Dementia to Caregivers Singing in Morning Care Situations

Music therapeutic caregiving', when caregivers sing for or together with persons with severe dementia during care situations, has been suggested as a way to reduce problematic behaviors in dementia care. The present study implemented this technique as an intervention in dementia care. Six caregivers participated in group interviews about their experiences of morning care situations without and with'Music therapeutic caregiving'. Through a qualitative content analysis two themes emerged.'Being in a different reality' was based on'usual' morning care situations. The caregivers' experienced the persons with dementia as absent-minded; communication and cooperation were difficult. The second theme,'Being present', was based on morning care situations with the intervention. The caregivers described communication as enhanced; the persons with dementia expressed themselves more appropriately, making cooperation possible. The results indicate that'Music therapeutic caregiving' might lead to a more positive experience of the person with dementia and seems to increase receptivity to caregiving.  

Palliativ vård : Anhörigvårdarens upplevelser av palliativ hemsjukvård.

Syftet med denna studie var att belysa anhörigvårdares upplevelser av den palliativa vården i hemmet utifrån aktuell vetenskaplig litteratur. Litteraturen som använts till resultatet har varit vetenskapliga artiklar av i huvudsak kvalitativ design. Artiklarna söktes i databaserna Blackwell Synergy, Elin och Pub Med. Sökorden som användes var Caring, Caregivers, Experiences, Family, Homecare, Needs, Palliative care, Perception. Sökorden kombinerades för att få artiklar som överensstämde med syftet och frågeställningen. Resultatet visade att anhörigvårdarna upplevde det som en självklarhet att den sjuke personen skulle vårdas hemma för att kunna behålla sitt normala liv och sin värdighet så långt som möjligt. Att få kunskap om hur de utförde omvårdnaden samt information om sjukdomen samt om risker och fördelar vid behandling upplevdes som viktigt och gav dem förståelse för situationen. Anhörigvårdarna levde med krav och förväntningar från flera håll, från den sjuke, andra anhöriga, från sjukvårdsteamet, samhället men också från dem själva. Periodvis var de både fysiskt och psykiskt utmattade, vilket gjorde dem sårbara. Perioden av palliativ hemsjukvård karaktäriserades av rädslor, osäkerhet, frustration och utmattning men även av positiva känslor och glädje över att kunna skapa livskvalité för den sjuke personen.

Anhörigas upplevelser i samband med vård av en äldre person i hemmet : En litteraturöversikt

SAMMANFATTNINGSyftet: Syftet med denna systematiska litteraturstudie var att studera hur anhöriga till äldre personer upplevde sin situation i i samband med att de vårdade sina äldre hemma, hur de hanterade sin situation, samt vilka strategier de använde sig av för att hantera sin roll som anhörigvårdare. Metod: Databaserna Cinahl och Medline användes i sökningarna efter relevanta artiklar. Sökord som användes var relative and older people and home care, home health care and family caregiver elderly people, family caregivers and care givers of aging people, elderly people and family care givers of aging people, family care givers of older people, family caregivers and frail elderly, family caregiver and older people and home care, home care older people and family caregivers older people, family caregivers older people. Efter genomläsning bedömdes 16 artiklar vara användbara i resultatet. Dessa kom från vetenskapliga tidskrifter och artiklarna innehöll både kvalitativa studier som kvantitativa studier. Resultat: De flesta anhörigvårdare var kvinnor, de kunde uppleva en högre belastning än män. De anhöriga påverkades både mentalt, fysiskt och emotionellt. De kände sig bundna men kunde även känna ett välbefinnande i vården av den äldre personen. Anhöriga upplevde sin roll som anhörigvårdare till äldre personer i hemmen som att de var delaktiga i omsorgen genom praktiskt som känslomässigt stöd. Deras situation hade även inverkan på deras upplevelse av stress och hur de hanterade situationen. En del äldre anhörigvårdare var själva äldre och i behov av hjälp. Konsekvenserna av deras reaktioner/upplevelser beskrevs som både subjektiv och objektiv belastning. Samt att de även var mindre benägna att söka stöd i form av avlastning för sina äldre personer. Slutsats: Rollen som anhörigvårdare till äldre personer som vårdas i hemmen innebar förändringar i anhörigas livssituation, de fick ta ett stort ansvar för den äldre personen. De upplevde stora påfrestningar både känslomässigt som praktiskt, många kände sig ensamma utan stöd, andra hade olika sätt att hantera sin situation. Äldre anhörigvårdare var mer utsatta för belastning av olika skäl när de vårdade äldre personer i hemmet, dels var de själva äldre samt att de själva kunde vara i behov av hjälp för sina hälsoproblem. Kvinnorna var den grupp anhörigvårdare som upplevde störst belastning i vården av äldre personer i hemmet. När det gällde att söka hjälp och stöd såg det olika ut bland anhörigvårdarna, trots att kvinnorna upplevde störst belastning var de minst benägna att söka hjälp.

Palliativ vård i hemmet - Anhörigas upplevelser av att vårda en närstående med cancer : En Litteraturöversikt

Syfte: Syftet med litteraturöversikten var att beskriva anhörigas upplevelser av att vårda sin närstående i den palliativa vården i hemmet. Metod: Studien genomfördes som en litteraturöversikt. Insamlingen av vetenskapliga artiklar utfördes på databaserna CINAHL, PubMed, Vård I Norden och manuella sökningar utfördes i elektroniska tidskrifter. I resultatet användes sammanlagt 15 kvalitativa artiklar som svarade mot litteraturöversiktens syfte och frågeställning. Bedömningsmall med kvalitativ inriktning användes för att granska artiklarnas kvalité. Artiklar med medel till hög kvalité inkluderades i studiens resultat. Resultat: Resultatet byggde på fem huvudteman utifrån anhörigas upplevelser av palliativ vård, (1) anhörigas beslut att vårda en närstående i hemmet, beskriver anhörigas negativa syn på sjukhusmiljön och närståendes önskan om att avsluta sitt liv i hemmet. (2) positiva och negativa faktorer med vård i hemmet, beskriver trygghet i palliativa teamets tillgänglighet, negativ faktor var bland annat trötthet, isolering och brist på stöd. (3) ansvar för vården, att vara oförberedd på rollen som anhörigvårdare och 24 timmars ansvar för sin närstående. (4) relationen mellan anhörig och närstående, stöd i att kommunicera med sin närstående i existentiella frågor. (5) stöd från kvalificerad vårdpersonal, beskriver bristande information från kvalificerad vårdpersonal om sjukdomsförlopp och vårdarrollen. Psykiskt- socialt- och existentiellt stöd var bristfälligt och som anhöriga uttryckte behov av. Konklusion: De främsta faktorerna till valet att bli anhörigvårdare grundade sig i viljan att uppfylla närståendes önskan att få spendera sista tiden i hemmet och att sjukhusmiljön sågs som kall och opersonlig. Anhöriga önskade socialt- psykiskt- och existentiellt stöd.

Anhörigas upplevelser när en familjemedlem som drabbats av demens flyttar in på ett särskilt boende

Bakgrund: När beslutet att flytta in på ett särskilt boende fattats förändras livssituationen för både den som drabbats av demens som för de anhöriga. Syftet: Syftet med denna litteraturöversikt var att studera och beskriva anhörigas upplevelser i samband med att en person som drabbats av demens flyttar in på ett särskilt boende. Metod: Studien genomfördes som en litteraturöversikt. Litteratur­sökningarna gjordes i databaserna Medline och Cinahl efter relevanta artiklar. Sökord som användes var relatives, experience, caregivers burden, coping, dementia, nursing home, placement, decision, Sweden, family caregivers. Sexton vetenskapliga artiklar analyserades med en kvalitativ innehållsanalys. Analysen resulterade i fem olika kategorier: att skapa en relation att känna sig delaktig, att känna skuld, att känna osäkerhet samt att fatta rätt beslut. Resultat: Att ta beslutet att flytta en person som drabbats av demens var svårt, eftersom det ofta är förknippat med skuldkänslor, att inte känna sig delaktig, samt en känsla av osäkerhet, och en oro om att inte ha tagit rätt beslut. Slutsats: Rollen som anhörig till en person som drabbats av demens är svår och det innebär en hög belastning samt en hög nivå av stress. Det är viktigt att den anhörige får stöd och uppmuntran och där har vårdpersonalen en viktig roll.

Vård i livets slut av personer med demens. Personal och anhörigas upplevelse av given vård : En metasyntes

Palliativt förhållningssätt kännetecknas av helhetssyn av människan och uppnås genom stöttning av individen att leva med värdighet och största möjliga välbefinnande till livets slut oavsett diagnos eller ålder. Demens är en sjukdom som är svårt handikappande för den som drabbas och för de anhöriga är sjukdomen förödande. Den palliativa vården av personer med demens är inte optimerad. Studier visar att det dels beror på demenssjukdomen som är svår att vårda och dels för att stöd till de personer som vårdar sina anhöriga och det sociala kommunala nätverket har brister. Syfte: Att analysera upplevelsen av given vård i livets slutskede hos personer med demensdiagnos ur personalens och anhörigas perspektiv. Metod: Metasyntes utförd med Howell Major och Savin-Badins analysmodell, Qualitative Research Synthesis. Resultat: Kunskap och personcentrering var de två begrepp som blev produkten av syntesen. Begreppen fungerar som motsatser, om det finns kunskap och personcentrering så finns en bra upplevelse av given vård hos personal och anhöriga och om det brister i kunskap och personcentrering blir upplevelsen sämre. Diskussion: Kunskap om demens bland personal har i syntesen visats vara en indikator för god vård vid livets slut. Utbildning i demenssjukdom bör ske kontinuerligt och på olika nivåer beroende på vilken personalkategori som utbildas. Konklusion: Palliativ vård och demens måste få utrymme i utbildningarna av all personal, från undersköterska till specialistläkare.

Medierepresentationer av etnicitetsochmigrationsrelaterade frågor inomäldreomsorgen i Sverige och Finland

Media representations of ethnicity- and migration-related issues within the elderly care in Sweden and Finland Research on welfare regimes and migration regimes has shown that Sweden and Finland have similar elderly care regimes but different migration regimes. It is against this backdrop that we set out to study what Swedish and Finnish daily press focusing on elderly care has written about ethnic minorities, migrants and migration. The study uses quantitative content analysis to analyze 241 daily newspaper articles published between 1995 and 2008. This article presents the themes that have been discussed, the elderly care actors that have been in focus (i.e. whether the focus has been on elderly care recipients, elderly care providers or informal caregivers), the ethnic backgrounds that these actors have had (i.e. whether the focus has been on the ethnic majority or on ethnic minorities) and the type of explanatory frameworks that the newspaper articles in focus have used. On the basis of this, we problematize the representations of ethnic minorities, migrants and migration that the newspaper articles in question put forth and the fact that the Swedish and Finnish daily press treats the issues at hand as if migration is mostly an issue that can be relegated to the periphery of the elderly care sectors’ agenda. 

Visualization of spirography-based objective measures in Parkinson's disease

Objective: To investigate whether advanced visualizations of spirography-based objective measures are useful in differentiating drug-related motor dysfunctions between Off and dyskinesia in Parkinson’s disease (PD). Background: During the course of a 3 year longitudinal clinical study, in total 65 patients (43 males and 22 females with mean age of 65) with advanced PD and 10 healthy elderly (HE) subjects (5 males and 5 females with mean age of 61) were assessed. Both patients and HE subjects performed repeated and time-stamped assessments of their objective health indicators using a test battery implemented on a telemetry touch screen handheld computer, in their home environment settings. Among other tasks, the subjects were asked to trace a pre-drawn Archimedes spiral using the dominant hand and repeat the test three times per test occasion. Methods: A web-based framework was developed to enable a visual exploration of relevant spirography-based kinematic features by clinicians so they can in turn evaluate the motor states of the patients i.e. Off and dyskinesia. The system uses different visualization techniques such as time series plots, animation, and interaction and organizes them into different views to aid clinicians in measuring spatial and time-dependent irregularities that could be associated with the motor states. Along with the animation view, the system displays two time series plots for representing drawing speed (blue line) and displacement from ideal trajectory (orange line). The views are coordinated and linked i.e. user interactions in one of the views will be reflected in other views. For instance, when the user points in one of the pixels in the spiral view, the circle size of the underlying pixel increases and a vertical line appears in the time series views to depict the corresponding position. In addition, in order to enable clinicians to observe erratic movements more clearly and thus improve the detection of irregularities, the system displays a color-map which gives an idea of the longevity of the spirography task. Figure 2 shows single randomly selected spirals drawn by a: A) patient who experienced dyskinesias, B) HE subject, and C) patient in Off state. Results: According to a domain expert (DN), the spirals drawn in the Off and dyskinesia motor states are characterized by different spatial and time features. For instance, the spiral shown in Fig. 2A was drawn by a patient who showed symptoms of dyskinesia; the drawing speed was relatively high (cf. blue-colored time series plot and the short timestamp scale in the x axis) and the spatial displacement was high (cf. orange-colored time series plot) associated with smooth deviations as a result of uncontrollable movements. The patient also exhibited low amount of hesitation which could be reflected both in the animation of the spiral as well as time series plots. In contrast, the patient who was in the Off state exhibited different kinematic features, as shown in Fig. 2C. In the case of spirals drawn by a HE subject, there was a great precision during the drawing process as well as unchanging levels of time-dependent features over the test trial, as seen in Fig. 2B. Conclusions: Visualizing spirography-based objective measures enables identification of trends and patterns of drug-related motor dysfunctions at the patient’s individual level. Dynamic access of visualized motor tests may be useful during the evaluation of drug-related complications such as under- and over-medications, providing decision support to clinicians during evaluation of treatment effects as well as improve the quality of life of patients and their caregivers. In future, we plan to evaluate the proposed approach by assessing within- and between-clinician variability in ratings in order to determine its actual usefulness and then use these ratings as target outcomes in supervised machine learning, similarly as it was previously done in the study performed by Memedi et al. (2013).

The core characteristics and nursing care activities in psychiatric intensive care units in Sweden

Internationally, research on psychiatric intensive care units (PICUs) commonly reportsresults from demographic studies such as criteria for admission, need for involuntary treatment, andthe occurrence of violent behaviour. A few international studies describe the caring aspect of thePICUs based specifically on caregivers’ experiences. The concept of PICU in Sweden is not clearlydefined. The aim of this study is to describe the core characteristics of a PICU in Sweden and todescribe the care activities provided for patients admitted to the PICUs. Critical incident techniquewas used as the research method. Eighteen caregivers at a PICU participated in the study bycompleting a semistructured questionnaire. In-depth interviews with three nurses and two assistantnurses also constitute the data. An analysis of the content identified four categories that characterizethe core of PICU: the dramatic admission, protests and refusal of treatment, escalating behaviours, andtemporarily coercive measure. Care activities for PICUs were also analysed and identified as controlling– establishing boundaries, protecting – warding off, supporting – giving intensive assistance, andstructuring the environment. Finally, the discussion put focus on determining the intensive aspect ofpsychiatric care which has not been done in a Swedish perspective before. PICUs were interpreted asa level of care as it is composed by limited structures and closeness in care.

Bemötande i vården vid övervikts- och fetmaproblematik En litteraturöversikt

Bakgrund: Övervikt och fetma orsakar idag fler dödsfall än undervikt. Det är ett folkhälsoproblem som ökar över hela världen. Övervikt och fetma leder till såväl fysiska som psykiska problem och besvär för den drabbade. Forskning har visat att patienter med övervikt eller fetma upplever mest stigmatisering i vuxen ålder. Syfte: Syftet med denna litteraturöversikt är att belysa bemötandet av patienter med övervikts- och fetmaproblematik ur patientens och vårdpersonalens perspektiv. Metoder: En litteraturöversikt. Resultat: Det framkom att patienter med högre BMI upplevde negativt bemötande från vårdpersonal, att de inte blev hörda. Patienterna sökte inte gärna vård. Det framkommer att vårdpersonalen hade en negativ attityd till patienter med övervikt eller fetma och ville helst inte vårda dessa. Slutsats: Patienter med övervikt eller fetma är en utsatt patientgrupp i såväl samhälle som inom vården. Patienterna upplever att de inte blir hörda och inte blir tagna på allvar. Vårdpersonal är enig om att vården måste hjälpa dessa patienter, trots det uppger en stor del av vårdpersonal att de inte vill vårda patienter med övervikt eller fetma relaterat till tidsbrist.