| 1. |
- Eriksson, Heléne, 1964-
(författare)
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End of Life Stroke Care : perspectives of health-care professionals and family members
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionEven though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members’ perspective.AimThe overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods.Design and MethodsThis thesis is based upon four papers employing qualitative, quantitative and mixed-method designs.Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies.Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR.Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units.Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses.ResultsFactors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient’s suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit’s aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient’s altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting’s aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were “seeking trust in chaos”, “seeking clarity when deciding about living or dying” and finally they were “seeking trust in care as a final act of love”.Conclusions:The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs’ attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.
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| 2. |
- Friedrichsen, Maria, 1966-, et al.
(författare)
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Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care — A qualitative study
- 2023
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 79:11, s. 4292-4303
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Tidskriftsartikel (refereegranskat)abstract
- AimsTo describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units.DesignA qualitative, reflexive thematic design with an inductive analysis was used.MethodsData were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR).ResultsTwo main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals.ConclusionThirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.Patient or Public ContributionNo patient or public contribution.ImpactIn palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life.Reporting MethodThe study was guided by the SRQR.What does this Article Contribute to the Wider Global Clinical Community?Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.
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| 3. |
- Edvardsson, Maria, 1972-
(författare)
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Circulating levels and assessment of clinical laboratory analytes, in >80-year-old, apparently healthy, moderately healthy, and frail individuals
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Blood samples are often used to investigate the possible presence of disease and to make treatment decisions. In the interpretation of the results, comparison either with previous values from the same individual or with a set of appropriate group-based reference intervals are used. Current reference intervals for common laboratory analytes are often based on measurements from apparently healthy persons aged 18–65 years. Age is accompanied by a general decline in organ functions and it is difficult to determine whether a change in levels of laboratory analytes in an elderly individual can be attributed to age alone, independent of environmental or disease processes. Frailty can be seen as a consequence of age-related multifactorial deterioration – physical, cognitive and sensory – resulting in vulnerability and lack of adaptability to internal stressors such as infection or new medication and/or external stressors such as fall at home. Consensus about the definition of “frail” and “frailty” is missing, both nationally and internationally, the question arises whether different definitions of “frailty” affect the interpretation of analytes when comparing different groups of elderly.The overarching aim of the thesis was to interpret and assess circulating levels of some clinical laboratory analytes in relation to conventional reference values in ≥80-year-old, “apparently healthy”, “moderately healthy”, and “frail” individuals. Data originated from other studies, in which blood samples were collected from individuals ≥80-year-old. Comparisons in Paper I of levels of some laboratory analytes, from 138 nursing home residents (NHRs), was made with blood from reference populations, both blood donor and the NORIP study. The results indicated differences for some immunological (complement factor 3 and 4, immunoglobulin G and M) and chemical analytes (alanine aminotransferase (ALT), phosphate, albumin, sodium, creatinine and urea), but no differences in levels occurred for aspartate aminotransferase (AST), gamma-glutamyltransferase (γ-GT) or lactate dehydrogenase (LDH). It was unclear whether the differences were due to differences in age between the elderly and the reference populations or whether the elderly individuals had chronic diseases and were on medication. In Paper II, 569 individuals elderly individuals ≥80 years old were classified as “healthy”, “moderately healthy”, and “frail”, based on diseases, medications and physical and cognitive abilities. Statistical differences between the groups were found for the investigated analytes; albumin, ALT, AST, creatinine and γ-GT. In Paper IV, individuals from Paper II (n=569) were divided into two groups and thereafter divided into “apparently healthy”, “moderately healthy”, and “frail”. One group was subdivided into “apparently healthy”, “moderately healthy” and “frail” based on physical and cognitive abilities and the other group was divided based on the frailty index (FI). There was no statistical difference found between “apparently healthy” and “moderately healthy" groups, regardless of classification model used. Among “frail” individuals, differences in levels occurred for three out of the five investigated analytes: ALT, creatinine and g-GT, with lower levels occurring when the FI classification model was used. No differences in levels occurred for albumin or AST in “frail” individuals, regardless of classification model used. The aim of Paper III was to study whether 1-year changes in complete blood count (CBC) (including haemoglobin (Hb), red blood cell (RBC), erythrocyte volume fraction (EVF), mean corpuscular volume (MCV), mean corpuscular Hb concentration (MCHC), white blood cell (WBC) and platelet count (PLT)), C-reactive protein (CRP) and interleukin (IL)-1β, IL-1RA, IL-6, IL-8 and IL-10 are associated with survival in elderly NHRs aged >80 years. Elevated levels of CRP and IL-8 during 1-year follow-up were associated with reduced length of survival in elderly NHRs. Based on the present thesis it is clear that there is need for reference intervals that consider both age and health status in elderly individuals. A reasonable conclusion when interpreting levels of analytes in elderly individuals with disease or frailty is that individual evaluation based on the individual’s previous levels, is recommended.
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| 4. |
- Kastbom, Lisa, 1978-
(författare)
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A good death from the perspective of patients with severe illness and advance care planning (ACP) in patients near end-of-life
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Previous research has indicated that what constitutes a good death is heterogenic and complex although there are some recurrent themes and similarities regardless individual background factors. Studies on advance care planning (ACP), i.e. making proactive plans regarding content of care and treatment limitations, on nursing home (NH) patients are rare. Positive effects of ACPs are shown, but also that these often are lacking. The overall aim with this thesis was to explore the perceptions of a good death from the perspective of patients with severe illness and to investigate, from different perspectives, experiences of ACP in a NH context. In paper I, patients with cancer in a palliative phase were interviewed on their perceptions of a good death. Death was viewed as a process and previous experiences on the death of others influenced their own perceptions. A good death was associated with living with the prospect of imminent death, preparing oneself and others for one’s death and dying comfortably, e.g. without suffering, with independence and with social relations intact. Some were comforted by their belief that death is predetermined, and that after death, there is something else. Others felt uncomfortable when they viewed death as the end of the existence. In paper II, nurses and physicians were interviewed on their experiences of the factors that shape the ACP process in NHs. Exploration of the patient’s preferences regarding content of care and treatment limitations was important, as well as integration of the patient’s preferences and the views of the family members and staff concerning these questions. ACP documentation had to be clear, updated and available for staff and the implementation and reevaluation of ACP were also considered important, according to the participants. Significance of clinicians’ perceiving beneficence as well as fear of accusations of maleficence were shown to be essential factors to contemplate. In a retrospective chart review (paper III), medical records of 367 deceased NH patients were analysed. A high prevalence of ACP was shown, using two different definitions of ACP (ACP I and ACP II). Moreover, adherence to the ACP content was strong and positive associations were seen between ACP and variables of the three research aims, such as: diagnosis (dementia), physician attendance at NH and end-of-life (EOL) care. In paper IV, family members of deceased NH patients were interviewed on their experiences of ACP in NHs. EOL issues were challenging to talk about, although the family members appreciated staff raising these questions. The patient’s preferences were sometimes explicitly or implicitly communicated. However, in some cases, family members had a feeling of the patient’s preferences, although they had not been clearly communicated. Everyday details symbolised staff commitment. The family members viewed the nurse as central. The physician was described as absent and ACP meetings often went unnoticed. Both involvement and lack of involvement could cause the family members feelings of guilt. In conclusion, we found that what constitutes a good death is highly individual, although recurrent themes are seen. EOL conversations are important and challenging and need staff training and experience. It seems important to support healthcare staff not only to initiate ACP in NH patients, but also to involve the patient and family members in the ACP and planning EOL care. Making proactive plans regarding content of care including treatment limitations, could enable patient autonomy, optimise the chances for the patient to experience a good death and enhance for the family members during the dying trajectory and after the patient’s death.
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| 5. |
- Ludvigsson, Mikael, 1976-
(författare)
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Subsyndromal depression hos äldre äldre personer
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Subsyndromal depression (SSD) eller subklinisk depression är ett vanligt affektivt tillstånd som kan beskrivas som depressivitet under gränsen för vad som kallas syndromal eller egentlig depressiv episod. Förekomsten av SSD har rapporterats vara ungefär 10 % i populationen, eller ungefär 2-3 gånger högre än förekomsten av syndromal depression. SSD jämfört med icke-depression (ND) är associerat med en lägre aktivitetsförmåga (ADL, Activities of Daily Living), lägre kognitiv funktion, lägre subjektiv hälsa, sämre psykiska utfall och en högre dödlighet. Emellertid har flertalet studier om SSD hos äldre gjorts i åldersgruppen yngre äldre (60-80 års ålder), medan få studier har undersökt SSD hos äldre äldre personer (80+ års ålder). Eftersom många aspekter (t ex multisjukdom, skörhet, funktionsförmågor och socialt beroende) generellt förändras mellan yngre äldre och äldre äldre åldrar, så finns det ett behov av ökad kunskap om SSD hos äldre äldre. Syftet med denna avhandling var att beskriva SSD, eller det komplexa området mellan syndromal depression och normalt åldrande, hos äldre äldre personer.Metod: studie 1 baserades på kvalitativa intervjuer (n=27), medan studier 2-4 till stor del baserades på data från en prospektiv observationsstudie av en kohort, ”Elderly in Linköping Screening Assessment” (ELSA85). ELSA85 hade en populationsbaserad design där man följde personer från 85 års ålder i tre uppföljande mätvågor. Depressivitet mättes med 15- frågeversionen av Geriatric Depression Scale (GDS-15), som också användes för att definiera SSD i studierna.Resultat: Analysen av de kvalitativa intervjuerna (studie 1) resulterade i fyra teman (livet går ned och kroppen sviktar, att klara sig själv, att hänga med, och att ta en dag i taget), vilka tillsammans gav en helhetsbild av SSD i de högsta åldrarna. I en jämförelse mellan SSD, ND och syndromal depression, så skiljde sig SSD kvalitativt från syndromal depression, men däremot inte tydligt från ND. En tvärsnittsanalys av data från baslinjen av studien (studie 2) identifierade associerade faktorer till SSD bland äldre äldre personer, och enligt analysen med multipel logistisk respektive linjär regression så var det fyra domäner (sociodemografiska faktorer, sviktande fysisk funktion, neuropsykiatriska faktorer och existentiella faktorer) som var signifikant associerade med SSD.I en fem års longitudinell uppföljning (studie 3) visades att direkta hälso- och sjukvårdskostnader per överlevnadsmånad och person var förhöjd hos personer med SSD jämfört med ND med ett storleksförhållande 1.45 (€634 vs €436), vilket var en signifikant skillnad även när man kontrollerade för somatisk multisjukdom. I en åtta års longitudinell uppföljning visades att dödligheten var förhöjd (dödsintensitet eller Hazard ratio (HR))=1.33) för personer med SSD jämfört med ND, liksom sjuklighet avseende personlig ADL (P-ADL), instrumentell ADL (IADL), ensamhet, subjektiv hälsa, och depressivitet. Däremot var inte kognitiv snabbhet, exekutiva funktioner eller global kognitiv funktion signifikant försämrade när man hade kontrollerat för relevanta variabler.Slutsatser: SSD hos äldre äldre personer ser olika ut hos olika personer, och personal i hälso- och sjukvården bör vara uppmärksamma på även andra depressiva tecken förutom de klassiska symtomen i diagnosregistren. SSD hos äldre äldre är associerat med förhöjda sjukvårdskostnader, förhöjd sjuklighet och dödlighet. Med tanke på den höga förekomsten av SSD och den demografiska utvecklingen med ökande antal äldre äldre personer i samhället, så indikerar fynden behovet av att utveckla kliniska och samhälleliga strategier för att förebygga SSD och associerade negativa utfall.
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| 6. |
- Ludvigsson, Mikael, 1976-
(författare)
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Subsyndromal Depression in Very Old Persons
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Subsyndromal depression (SSD) or subthreshold depression is a common affective condition that can be described as depressiveness below the threshold of what is called a syndromal or a major depressive episode. The point prevalence for SSD has been reported to be about 10% in the community, or about two or three times higher than the prevalence for syndromal depression. In elderly persons, SSD compared to non-depression (ND) is associated with impaired activities of daily living, lower cognitive function, lower self-perceived health, worse psychiatric outcomes and higher mortality. However, most studies on SSD in elderly persons have been done in the young old age group (age 60-80 years), while few studies have investigated SSD in very old persons (age 80+). As many aspects (e.g. multimorbidity, frailty, functional decline and social dependence) change between the young old and the very old ages, there is a need for more knowledge about SSD in the very old. The overall aim of this doctoral thesis was to describe SSD, or the complex area between syndromal depression and normal aging, in very old persons.Method: Paper 1 was based on qualitative interviews (n=27), while papers 2-4 were based largely on data from a prospective observational cohort study “Elderly in Linköping Screening Assessment” (ELSA85), with a population-based design following the participants from the age of 85 in three waves of follow-up. The 15-item Geriatric Depression Scale (GDS-15) was used for measuring depressiveness and to define SSD in the studies.Results: The analysis of the qualitative interviews (paper 1) resulted in four themes (life curve and the body go down, to manage on one’s own, to keep up with life, and taking one day at a time), giving a comprehensive picture of SSD in very old age. In a comparison among SSD, ND and syndromal depression, SSD differed qualitatively from syndromal depression, but not clearly from ND. A cross-sectional analysis of data from baseline (paper 2) identified factors associated with SSD in very old persons, and according to analyses with multiple logistic and linear regressions, four domains (sociodemographic factors, declining physical functioning, neuropsychiatric factors, and existential factors) were significantly associated with SSD.A five-year longitudinal follow-up (paper 3) showed that direct healthcare costs per month of survival for persons with SSD exceeded those of persons with ND by a ratio of 1.45 (€634 vs €436), a difference that was significant even after controlling for somatic multimorbidity.An eight-year longitudinal follow-up (paper 4) showed that mortality was elevated (hazard ratio=1.33) for persons with SSD compared to ND, as were morbidity regarding basic ADL, IADL, loneliness, self-perceived health and depressiveness, whereas cognitive speed, executive functions and global cognitive function were not significantly impaired when adjusting for covariates.Conclusion: SSD in very old persons has a different presentation in different persons, and healthcare personnel should be attentive to other depressive signs beside the classical ones in the diagnostic classification registries. SSD in the very old is associated with elevated direct healthcare costs, morbidity and mortality. Considering the high prevalence of SSD and the demographic development of increasing numbers of very old people, the findings highlight the need to develop clinical and societal strategies to prevent SSD and associated negative outcomes.
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| 7. |
- Milberg, Anna, 1966-
(författare)
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Family members' experience of palliative home care
- 2003
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The presence of a family member is often a prerequisite for successful palliative home care. The overall aim of this thesis was to contribute to a deeper understanding of family members' experiences of having a dying relative or friend cared for by advanced palliative home care. Two methodological approaches were used. Semi-structured tape-recorded interviews were analysed with a hermeneutic approach (19 family members; 30 interviews). Two postal questionnaires with open-ended questions were distributed and the responses (217 and 233, respectively) were analysed with qualitative and quantitative content analyses.All studies had a salutogenic orientation, i.e. with the origin of health in focus, and therefore facilitating as well as burdensome aspects were studied. In the interview studies, Antonovsky's salutogenic theory of Sense of coherence was applied as a framework, and the concepts of comprehensibility, manageability and meaningfulness were used.The studies showed that when the family members evaluated the palliative home care, they mentioned both positive and negative aspects with regard to the service, e.g. accessibility and staff competence, and comfort factors, e.g. feeling secure and being at the centre of attention.Comprehensibility concerned more than traditional information-giving and included symbols, basic life assumptions and previous knowledge, which were important for creating an inner congruent reality, as opposed to an inner chaos.Staff - family member interactions contributed to manageability by facilitating the family member's feeling of sharing the responsibility and contributing to the care together with the staff.Having a dying relative of friend could include also feelings of meaningfulness in an otherwise burdensome situation. Participating in the care, feeling hope, knowing that the patient did not suffer and doing the best possible had contributed to a feeling of meaningfulness.Of the family members, 36% had experienced powerlessness and/or helplessness, whereas 33% stated that they had never had such feelings during the palliative home care period. The feelings were characterised by perception of the patient's suffering, his/her fading away, and a feeling of own insufficiency. Moreover, the meaning of powerlessness and helplessness involved a deeper level including feelings of guilt, anger and loneliness.It is concluded that a salutogenic perspective is relevant in palliative home care. When staff interacts with family members in palliative care, there is a potential for facilitating the family members' perception of manageability, comprehensibility and meaningfulness. Understanding of home as a place of palliative care seems important and includes the contribution of a familiar environment, retained everyday life and of a basis for self-transcendence. Staff needs also to be aware of the risk of negative aspects, such as lost privacy and changed meaning of the home. Higher abstraction levels, including existential dimensions, such as security and powerlessness were essential parts of the family members' experiences. If such experiences are not considered in goal-setting and in service evaluation, important parts of palliative care will not be reflected by the chosen/measured parameters.
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