Informal Care in the Light of Well-Being – the Case of Finland

The societal triumph in terms of increased life expectancy has, in combination with other development, contributed to an increased need for socially and financially sustainable care forms for older adults in Finland, as in many other parts of the Western world. An example of such a solution is informal care, that is, a formalisation of informal care where a close one with the help of public support services cares for care dependents who cannot manage on their own. The promotion of well-being of older adults is an important part of Finnish social policy. Macro-level decisions and local implementations affect well-being. Support services and benefits shape the prerequisites for coping in everyday life and subsequently experiencing well-being of older adults concerned with informal care. Simultaneously, well-being is a more complex and holistic phenomenon than only the outcome of welfare. Care is a relational and dynamic process, where norms and personal life stories are examples of factors that shape the experiences of how care services—and subsequently well-being—ought to be given or received. This dissertation aims to study the informal care of older adults in light of well-being theories in a Finnish setting. In the first study, informal care recipients’ care preferences and thoughts on the future were explored from a life course perspective. In the second study, well-being was investigated by applying the capability approach to dismantle an informal care dyad’s care arrangements and consequences on well-being across time. In the third study, the caregiver stress process model was used to investigate associations between individual economic, social, and political resources and subjective caregiver burden among older spousal caregivers in the Bothnia region. The fourth study explored the feasibility of a co-designed intervention developed in line with the World Health Organization’s Healthy Ageing paradigm with the aim of training former caregivers to become expert caregivers. In studies 1 and 2, informal care recipients’ experiences were explored based on data collected from semi-structured interviews with seven informal care recipients (Study 1) and follow-up interviews with the same respondents and their informal caregivers in Study 2. The results illustrated that the development of social care for older adults contributed to the care recipients’ well-being in both direct and indirect ways. The informal care recipients appreciated living at home despite a declined functional capacity, and the offered support services promoted this ability to some extent. Simultaneously, the social care system sometimes acted as a barrier towards experiencing well-being. As an indirect effect, negative experiences and/or perceptions of formal care alternatives contributed to feelings of insecurity and uncertainty regarding future care arrangements. In Study 3, multivariate logistic regression was used on data derived from the Gerontological Regional Database (GERDA) survey 2016 to study the associations between individual social, economic, and political resources and subjective caregiver burden among older spousal caregivers in Österbotten/Pohjanmaa (Finland) and Västerbotten (Sweden). About half of the spousal caregivers reported experiencing subjective caregiver burden, and this was slightly more common among Finnish-speaking caregivers. Frequent contact with family members indicated subjective caregiver burden, potentially meaning that frequent contact with family members is an indicator for intensive informal care. High levels of financial stress indicated subjective caregiver burden, while personal income did not. Out of the control variables, being Finnish speaking, reporting low perceived self-rated health and receiving formal support for informal care indicated subjective caregiver burden. In Study 4, quantitative and qualitative methods were used to explore the feasibility of a co-designed intervention for former informal caregivers—a group that is largely overlooked in both research and policy. The participants took part in a training programme to become ‘expert caregivers’ for current caregivers. Partly due to the already existing infrastructure for social activities for informal caregivers and/or older adults in the region of Österbotten, the intervention was successfully implemented. The results showed that there was a demand for the intervention among former caregivers and a demand among current caregivers to take part in the support offered by the trained expert caregivers. The intervention created a social context for the expert caregivers, most of whom were bereaved widows/widowers. The main conclusion of the thesis is that well-being of older adults concerned with informal care is highly complex and prone to change in terms of needs and resources. Both facilitators and barriers to well-being are interwoven in the Finnish welfare context. The results in this thesis imply that an extended view of informal care and the meaning of social relationships can lead to until now unutilized resources. To ensure that resources as well as needs are considered across different phases of informal care and among different target groups, the co-operation between different welfare actors is crucial. Well-functioning co-operation and development involving multiple welfare actors and citizens themselves form a solid foundation for successful interventions that promote well-being.Den samhälleliga triumfen i form av en ökad förväntad livslängd har i kombination med annan utveckling bidragit till ett ökat behov av socialt och ekonomiskt hållbara omsorgslösningar för äldre i Finland såsom i många andra delar av västvärlden. Ett exempel på en sådan lösning är närståendevård, d.v.s. en formalisering av informell omsorg där en anhörig med hjälp av offentliga stödtjänster ger vård och omsorg åt vårdbehövande som inte klarar sig självständigt. Främjandet av välbefinnande bland äldre utgör en viktig del av Finlands socialpolitiska verksamhet. Politiska beslut på makronivå och lokala implementeringar i kommunerna påverkar välbefinnande. Stödtjänster och förmåner formar förutsättningar för att klara vardagen och därmed uppleva välbefinnande bland äldre som berörs av närståendevård. Samtidigt är välbefinnande ett mer komplext och holistiskt fenomen än enbart resultatet av välfärd. Omsorg är en relationell och dynamisk process, där normer och den personliga livshistorien är exempel på faktorer som kan forma upplevelserna av hur omsorg bör ges eller tas emot – och därmed välbefinnandet. Syftet med denna avhandling är att studera närståendevård bland äldre i ljuset av välbefinnandeteorier i en finländsk kontext. I den första delstudien undersöktes närståendevårdtagares vårdpreferenser och tankar om framtiden med hjälp av livsloppsperspektivet. I den andra delstudien användes kapabilitetsteorin för att demontera en närståendevårddyads vårdarrangemang och dess konsekvenser för välbefinnande över tid. I den tredje delstudien användes närståendevårdares stressprocessmodell för att studera sambanden mellan individuella ekonomiska, sociala och politiska resurser och subjektiv närståendevårdarbörda bland äldre makar som ger närståendevård i Botniaregionen. I den fjärde delstudien studerades genomförbarheten och effekterna av en samskapad intervention som utvecklats i enlighet med Världshälsoorganisationens Hälsosamt Åldrande paradigm med syfte att utbilda före detta närståendevårdare till att bli erfarenhetsmentorer. I studie 1 och 2 undersöktes närståendevårdmottagares erfarenheter med fokus på vårdpreferenser och vårdarrangemang baserat på data insamlat från semistrukturerade intervjuer med sju närståendevårdmottagare (delstudie 1) samt uppföljningsintervjuer med samma respondenter och deras närståendevårdare i delstudie 2. Resultaten från studie 1 och 2 illustrerade hur utvecklingen inom äldreomsorgen bidrog till närståendevårdtagares välbefinnande på både direkta och indirekta sätt. Närståendevårdtagarna värdesatte att få bo hemma trots en nedsatt funktionsförmåga och de erbjudna stödtjänsterna främjade denna möjlighet till viss del. Samtidigt fungerade social- och hälsovårdssystemet ibland som ett hinder för att uppleva välbefinnande. Som en indirekt effekt bidrog negativa erfarenheter och/eller föreställningar om formella vårdalternativ till känslor av otrygghet och osäkerhet gällande framtida vårdarrangemang. I studie 3 användes multivariat logistisk regression på data från GERDA-enkätundersökningen 2016 för att studera sambanden mellan individuella sociala, ekonomiska och politiska resurser och subjektiv närståendevårdbörda bland äldre närståendevårdmakar i Österbotten och Västerbotten. Ungefär hälften av närståendevårdarna rapporterade att de upplevde subjektiv närståendevårdbörda och detta var något mer förekommande bland finskspråkiga närståendevårdare. Frekvent kontakt med familjemedlemmar indikerade subjektiv närståendevårdbörda, vilket potentiellt kan innebära att frekvent kontakt med familjemedlemmar är en indikator för intensiv närståendevård. En hög nivå av ekonomisk stress indikerade subjektiv närståendevårdbörda, medan personlig inkomst inte gjorde det. Av kontrollvariablerna indikerade finsk språkgruppstillhörighet, låg självskattad hälsa och formellt stöd för närståendevård subjektiv närståendevårdbörda. I studie 4 användes både kvantitativa och kvalitativa metoder för att studera genomförbarheten i en samskapad intervention för före detta närståendevårdare – en grupp som till stor del är förbisedd inom både forskning och policy. Deltagarna tog del av ett utbildningsprogram för att bli ”erfarenhetsmentorer” för nuvarande närståendevårdare. Delvis på grund av den redan existerande infrastrukturen för sociala aktiviteter för närståendevårdare och/eller äldre individer i regionen Österbotten, kunde interventionen framgångsrikt implementeras. Resultaten visade att det fanns efterfrågan på interventionen bland de utbildade erfarenhetsmentorerna och en efterfrågan bland nuvarande närståendevårdare att ta del av erfarenhetsmentorernas stöd. Interventionen skapade en social kontext för erfarenhetsmentorerna varav de flesta var änkor/änklingar. Avhandlingens huvudsakliga slutsats är att villkoren för att uppleva välbefinnande bland äldre berörda av närståendevård är mycket komplexa och föränderliga i termer av behov och resurser. Både möjliggörande och hindrande faktorer för välbefinnande är inbäddade i den finländska välfärdskontexten. Resultaten i avhandlingen tyder på att en vidgad syn på närståendevård och sociala relationers betydelse kan leda till hittills outnyttjade resurser. För att säkerställa att såväl resurser som behov tas i beaktande under närståendevårdens gång och bland olika målgrupper som berörs av närståendevård, bör samarbetet mellan olika aktörer inom välfärden fungera. Ett välfungerande samarbete och utvecklingsarbete som involverar olika välfärdsaktörer och medborgare själva skapar en god grund för framgångsrik verksamhet som stöder välbefinnande

The Expert Caregiver Intervention Targeting Former Caregivers in Finland : A Co-Design and Feasibility Study Using Mixed Methods

Informal caregivers face risks of social isolation. Given the high prevalence of informal caregivers in Europe, a considerable proportion of the population are also former caregivers. The Finnish Expert Caregiver intervention sought to train former caregivers to become volunteers aiming to support current caregivers through mainly peer support. The aims of this mixed method non-controlled exploratory intervention study were to assess the feasibility of the Finnish Expert Caregiver intervention by co-designing and implementing the intervention, and by assessing demand and practicality with special attention to the impact of COVID-19. The findings imply that the intervention was feasible as it resulted in a co-designed training course consisting of 30 h with 25 participants enrolling and 19 of them trying volunteering activities. The participants reported high scores on well-being at all timepoints of study, however, without statistically significant differences. The analysis of the focus group interviews revealed that the Expert Caregivers experienced the intervention as meaningful and offered them a sense of belonging with the other participants. Apart from using their caregiving past as an asset, the participants also took advantage of other personal skills and resources. Risks of adverse effects were related to the participants' expectations on their own contribution, demanding peer support recipients, poorly functioning peer support groups, and insufficient distance to one's caregiving past. The participants stressed the need for continuing support from intervention facilitators. Future studies with larger samples should investigate whether the effects differ between subgroups of participants and explore the perspective of the peer support recipients

Prevalence, associated factors and outcomes of pressure injuries in adult intensive care unit patients: the DecubICUs study

Funder: European Society of Intensive Care Medicine; doi: http://dx.doi.org/10.13039/501100013347Funder: Flemish Society for Critical Care NursesAbstract: Purpose: Intensive care unit (ICU) patients are particularly susceptible to developing pressure injuries. Epidemiologic data is however unavailable. We aimed to provide an international picture of the extent of pressure injuries and factors associated with ICU-acquired pressure injuries in adult ICU patients. Methods: International 1-day point-prevalence study; follow-up for outcome assessment until hospital discharge (maximum 12 weeks). Factors associated with ICU-acquired pressure injury and hospital mortality were assessed by generalised linear mixed-effects regression analysis. Results: Data from 13,254 patients in 1117 ICUs (90 countries) revealed 6747 pressure injuries; 3997 (59.2%) were ICU-acquired. Overall prevalence was 26.6% (95% confidence interval [CI] 25.9–27.3). ICU-acquired prevalence was 16.2% (95% CI 15.6–16.8). Sacrum (37%) and heels (19.5%) were most affected. Factors independently associated with ICU-acquired pressure injuries were older age, male sex, being underweight, emergency surgery, higher Simplified Acute Physiology Score II, Braden score 3 days, comorbidities (chronic obstructive pulmonary disease, immunodeficiency), organ support (renal replacement, mechanical ventilation on ICU admission), and being in a low or lower-middle income-economy. Gradually increasing associations with mortality were identified for increasing severity of pressure injury: stage I (odds ratio [OR] 1.5; 95% CI 1.2–1.8), stage II (OR 1.6; 95% CI 1.4–1.9), and stage III or worse (OR 2.8; 95% CI 2.3–3.3). Conclusion: Pressure injuries are common in adult ICU patients. ICU-acquired pressure injuries are associated with mainly intrinsic factors and mortality. Optimal care standards, increased awareness, appropriate resource allocation, and further research into optimal prevention are pivotal to tackle this important patient safety threat

Prevalence, associated factors and outcomes of pressure injuries in adult intensive care unit patients: the DecubICUs study

Funder: European Society of Intensive Care Medicine; doi: http://dx.doi.org/10.13039/501100013347Funder: Flemish Society for Critical Care NursesAbstract: Purpose: Intensive care unit (ICU) patients are particularly susceptible to developing pressure injuries. Epidemiologic data is however unavailable. We aimed to provide an international picture of the extent of pressure injuries and factors associated with ICU-acquired pressure injuries in adult ICU patients. Methods: International 1-day point-prevalence study; follow-up for outcome assessment until hospital discharge (maximum 12 weeks). Factors associated with ICU-acquired pressure injury and hospital mortality were assessed by generalised linear mixed-effects regression analysis. Results: Data from 13,254 patients in 1117 ICUs (90 countries) revealed 6747 pressure injuries; 3997 (59.2%) were ICU-acquired. Overall prevalence was 26.6% (95% confidence interval [CI] 25.9–27.3). ICU-acquired prevalence was 16.2% (95% CI 15.6–16.8). Sacrum (37%) and heels (19.5%) were most affected. Factors independently associated with ICU-acquired pressure injuries were older age, male sex, being underweight, emergency surgery, higher Simplified Acute Physiology Score II, Braden score 3 days, comorbidities (chronic obstructive pulmonary disease, immunodeficiency), organ support (renal replacement, mechanical ventilation on ICU admission), and being in a low or lower-middle income-economy. Gradually increasing associations with mortality were identified for increasing severity of pressure injury: stage I (odds ratio [OR] 1.5; 95% CI 1.2–1.8), stage II (OR 1.6; 95% CI 1.4–1.9), and stage III or worse (OR 2.8; 95% CI 2.3–3.3). Conclusion: Pressure injuries are common in adult ICU patients. ICU-acquired pressure injuries are associated with mainly intrinsic factors and mortality. Optimal care standards, increased awareness, appropriate resource allocation, and further research into optimal prevention are pivotal to tackle this important patient safety threat

Correction to: Prevalence, associated factors and outcomes of pressure injuries in adult intensive care unit patients: the DecubICUs study

The original version of this article unfortunately contained a mistake

A Cross-Sectional Study on the Associations between Economic, Social, and Political Resources and Subjective Caregiver Burden among Older Spousal Caregivers in Two Nordic Regions

Inspired by the caregiver stress process model emphasising the role of resources for caregiving outcomes, the aim of this study was to investigate the prevalence of subjective caregiver burden (SCB) and its associations with individual social, economic, and political resources among older spousal caregivers in a Nordic regional setting. Cross-sectional survey data collected in 2016 in the Bothnia region of Finland and Sweden were used, where 674 spousal caregivers were identified and included in the analyses. The descriptive results showed that about half of the respondents experienced SCB. SCB was more common among Finnish-speaking caregivers. Results from the multivariate logistic regression analysis showed that none of the assessed political resources were significantly associated with SCB when controlling for other variables. Experiencing financial strain was associated with SCB, while personal income was not. Frequent contact with family members was statistically significantly associated with SCB. Future research could use longitudinal data to determine causal relationships, and when data allow, test the full caregiver stress process model to investigate the role of mediating factors in different comparative settings. Accumulated evidence on risk factors for negative outcomes of informal caregiving can contribute to effective screening tools for identifying and supporting vulnerable caregivers, which is becoming increasingly important with the ageing population

The gold women with many identities : A qualitative study of the Swedish tabloids representation of the Olympic games in Pyeongchang 2018.

The motive of our study was to examine the differences and the similarities between how tabloids write about male versus female cross-country skiing participants. The main focus was to examine their adversities and successes at the Olympics in Pyeongchang 2018. The study had two main questions to analyze this: “How does Swedish tabloids report about the female and male cross-country skiing teams at the Olympics in Pyeongchang 2018?” and “How do Swedish tabloids report about the setbacks and successes regarding the Swedish cross-country skiing teams at the Olympics in Pyeongchang 2018?”. The result of our discourse analysis showed us that the tabloids present the female national team’s performance differently to how they present the male national team's performance. We made a discourse analysis of nine different articles from the Swedish tabloids Aftonbladet and Expressen. The tabloids write about the female national team’s performances and successes and they balance it by also writing about their setbacks. The reasoning we found as to why the tabloids writes about female athletes more in-depthly than the men is because there is a larger demand for it, owing to their huge success in the Olympics.In contrary, the articles about the male national team, the tabloids write about their setbacks without questioning underlying factors or previous training that could be the basis of their failures. The tabloids also choose to publish articles with more private themes when it comes to the female athletes. This does not occur in the articles about the male cross country national team. In the articles about the men, the tabloids choose not to include personal facts of any kind, all analysed articles deal instead with performance or setback related types of themes.

”Man får hjälp då man behöver” - äldre närståendevårdtagares vårdval ur ett livsloppsperspektiv

Den demografiska utvecklingen leder till omorganiseringar inom den finländska äldreomsorgen. Privatisering, marknadisering och närståendevård ökar med konsekvenser för vårdbehövande och deras anhöriga. Temat för den här artikeln är närståendevård. Tidigare forskning har fokuserat i större utsträckning på vårdarna, trots att också vårdtagaren är en aktiv part i vården. Enligt livsloppsperspektivet ses åldrande som en livslång process. En individs livslopp påverkas av de begränsningar och möjligheter som styr hennes val och handlingar i en specifik historisk och social kontext. I den här studien har sju vårdtagare intervjuats med kvalitativa semistrukturerade intervjuer. Syftet var att studera äldre närståendevårdtagares vårdval ur ett livsloppsperspektiv. Studiens frågeställningar var: hur kan bakgrunden till närståendevårdtagarnas vårdval förstås ur ett livsloppsperspektiv? Vad har vårdtagarna för tankar om framtiden? Resultaten visade att valet av närståendevård påverkades av den personliga bakgrunden och relationen till närståendevårdaren, men även av delvis negativa attityder till formell äldreomsorg. Vårdtagarna oroade sig för framtida vårdarrangemang. ”You receive help when you need it” – older informal care recipients’ care choice from a life course perspective Demographic development leads to increasing privatization, marketization and informal care in Finnish eldercare. The theme for this study is informal care. Previous research has focused on caregivers, even though the recipient is also an active part in care. According to the life course perspective, ageing is a lifelong process that takes place in a historical and social context. Seven older informal care recipients have been interviewed using qualitative semi-structured interviews. The aim was to study older informal care recipients’ care choice from a life course perspective. The research questions were: how can the background of the recipients’ care choice be understood from a life course perspective? What are the recipients’ thoughts on the future? The results showed that the care recipients’ choice was affected by personal reasons and the relationship with the caregiver, but also by partly negative attitudes towards formal eldercare. The care recipients worried about future arrangements