| 1. |
- Falk Johansson, Marcus, et al.
(författare)
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A comparison of spouse and non-spouse carers of people with dementia : a descriptive analysis of Swedish national survey data
- 2021
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Ingår i: BMC Geriatrics. - : BioMed Central. - 1471-2318. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundBeing an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.MethodsThe study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7%) responded, of whom 330 (2.95%) were informal carers of a PwD.ResultsIn comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.ConclusionsSpouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.
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| 2. |
- Falk Johansson, Marcus
(författare)
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For better and for worse, till death do us part : Support needs of persons caring for a co-habitant spouse or partner with dementia
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Caring for a partner with dementia is typically stressful and challenging. Such carers can become overwhelmed by their responsibilities, neglecting their personal needs as well as their need for support as a carer. Receipt of support is low among spouse carers, while the support received may not be appropriate for their needs. More research is required to develop effective support for this important group of carers. Overall aim: To explore the life- and caring situation of spouses caring for a partner with dementia and to increase the understanding of their needs and experiences of support. Methods: This thesis consists of four papers (I-IV): I, Analysis of data on informal carers of persons with dementia (n=330) from a cross-sectional survey of a stratified random probability sample of adults in Sweden (N=30 009); II and III, a cross-sectional survey of a convenience sample of people aged 65 years or older caring for a partner with dementia (N=175). Hierarchal regression models explored positive and negative aspects of caring (II), and principal component analysis examined carers’ perceptions of support (III); IV, a thematic analysis of semi-structured telephone interviews with 24 spouse carers, exploring their caring experiences. Results: Compared to other carers, spouses of persons with dementia received less support from family or local authorities, while experiencing more negative impact from caring (I). Negative impact from, and positive value of, caring among spouses, were associated with different aspects of their situation (II). Support was perceived as important, yet spouses may not perceive support to themselves as more important than support to their partner (III). Spouse carers experienced a loss of self and felt confined in their situation, finding it hard to distinguish between their needs and those of their partner (IV). Conclusion: Compared to other carers, spouses are more exposed to the negative aspects of caring, while being less supported. Support to spouse carers should focus on strengthening the positive aspects of caring to mitigate the negative aspects. As a spouse’s needs are conditioned by their partner’s, support should focus on spouses’ personal needs and their partners’ care needs.
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| 3. |
- Falk Johansson, Marcus, et al.
(författare)
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Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons With Dementia in Sweden
- 2021
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Ingår i: Family Caregiving and Persons with Dementia. - : Oxford University Press (OUP). ; , s. 154-
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Konferensbidrag (refereegranskat)abstract
- As welfare providers struggle to meet the care needs of persons with dementia (PwDs), most of their needs are being met by a family carers, most often a spouse. The situation for spouse carers is unique, e.g., with grief, loneliness and loss of intimacy combining with stress and poor health. Research is needed to develop adequate support for spouse carers based on evidence of what influences negative and positive outcomes of care. The present study investigated psychosocial correlates of spouse carers’ (i) negative impact and (ii) positive value of caring. Data from a cross-sectional survey of 165 spouse carers community-resident in Sweden was analysed in two hierarchical regression models to predict negative impact and positive value of caring. Results found that negative impact and positive value were explained by different variables, significant predictors for negative impact included carer stress, health, and emotional loneliness, and change in intimacy with the care-recipient, while positive value was predicted by mutuality, change in closeness to the care-recipient and quality of support. Negative impact and positive value shared variance of only 17.2%. Thus, negative impact and positive value represent different aspects of the carer situation. Consequently, support needs to target several aspects in carers’ life, aiming to; facilitate for spouses to manage PwD’s impairment, increase emotional support while also strengthening the relationship between carer and PwD to reduce negative impact while increasing positive value.
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| 4. |
- Falk Johansson, Marcus, et al.
(författare)
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Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 19:3
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Tidskriftsartikel (refereegranskat)abstract
- (1) Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse car-ers of PwD in Sweden. (2) Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4) Conclusions: Support to spouse carers of PwD should address the carer–care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.
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| 5. |
- Falk Johansson, Marcus, et al.
(författare)
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Spouse’s supported and unsupported care of persons with dementia : Home care and the informal caregiver’s perspective
- 2021
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Konferensbidrag (refereegranskat)abstract
- Introduction. Caring for a person with dementia (PWD) can negatively affect the quality of life of informal carers, and research suggests spouse carers, often being older, are particularly vulnerable and requiring of support. Yet the formal support offered is rarely tailored to meet the needs of spouse carers of PWDs. The aim of the present study was to compare spouse carers to other carers of PWDs on a range of factors, as a foundation for a better understanding of their support needs. Material and methods. Cross-sectional survey. In late 2018 a random stratified sample was taken of the Swedish population aged 18 and older. Of 30,009 people contacted, 11,168 completed and returned a questionnaire or completed a web-based version, a response rate of 37.3%. The questionnaire contained questions on whether the respondent was an informal carer for another person, the extent of care provided, contact with and support received from formal services, and impacts of care.Results. Of the respondents, 378 (3.38%) were carers of PWDs, of whom 107 (28.3%) were spouse carers. Spouse carers compared to other carers of PWD provide care more intenselyand are more informed on their right to support from local authorities. While more often being offered formal support in their carer role, they are less supported in providing care and report a higher negative impact (for all p<.05). Conclusions. Formal support is offered to spouse carers in their carer role, but might not be tailored to their specific needs of support.
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| 6. |
- Kirvalidze, Mariam, et al.
(författare)
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Effectiveness of integrated person-centered interventions for older people's care : Review of Swedish experiences and experts' perspective
- 2024
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Ingår i: Journal of Internal Medicine. - : John Wiley & Sons. - 0954-6820 .- 1365-2796.
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Tidskriftsartikel (refereegranskat)abstract
- Older adults have multiple medical and social care needs, requiring a shift toward an integrated person-centered model of care. Our objective was to describe and summarize Swedish experiences of integrated person-centered care by reviewing studies published between 2000 and 2023, and to identify the main challenges and scientific gaps through expert discussions. Seventy-three publications were identified by searching MEDLINE and contacting experts. Interventions were categorized using two World Health Organization frameworks: (1) Integrated Care for Older People (ICOPE), and (2) Integrated People-Centered Health Services (IPCHS). The included 73 publications were derived from 31 unique and heterogeneous interventions pertaining mainly to the micro- and meso-levels. Among publications measuring mortality, 15% were effective. Subjective health outcomes showed improvement in 24% of publications, morbidity outcomes in 42%, disability outcomes in 48%, and service utilization outcomes in 58%. Workshop discussions in Stockholm (Sweden), March 2023, were recorded, transcribed, and summarized. Experts emphasized: (1) lack of rigorous evaluation methods, (2) need for participatory designs, (3) scarcity of macro-level interventions, and (4) importance of transitioning from person- to people-centered integrated care. These challenges could explain the unexpected weak beneficial effects of the interventions on health outcomes, whereas service utilization outcomes were more positively impacted. Finally, we derived a list of recommendations, including the need to engage care organizations in interventions from their inception and to leverage researchers' scientific expertise. Although this review provides a comprehensive snapshot of interventions in the context of Sweden, the findings offer transferable perspectives on the real-world challenges encountered in this field. image
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| 7. |
- Marmstål Hammar, Lena, 1979-, et al.
(författare)
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Exhausted and trapped in isolation. Caring for a spouse with dementia during the Covid-19 pandemic
- 2021
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Ingår i: Family Caregiving (HS Poster). - : Oxford University Press (OUP). ; , s. 800-801
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Konferensbidrag (refereegranskat)abstract
- Even before the Covid-19 pandemic, spouse carers of persons with dementia (PwDs) found their care responsibilities overwhelming and had little time to focus on their own lives. To minimize the risk of being infected with Covid-19, older persons are recommended to self-isolate in their homes, while formal support such as respite care and day care centers are withdrawn. This study involved semi-structured interviews with 24 spouse carers of community-living PwDs, with the aim of describing their situation during the pandemic. The interviews were analyzed with qualitative content analysis. Results revealed that they commonly declined help because of the perceived risk of their spouse being infected with Covid-19 and thus also possibly causing their death. They described feelings of being trapped in their situation, as they experienced having no choice than take all responsibility for the care of their partner themselves, with cost of being unable to take necessary breaks. This was described as making an already strained situation almost unbearable, which led to conflicts with their partner. However, the spouses also described positive aspects due to strategic changes in health and social care provision to prevent the spread of the virus, such as greater staff continuity in home care services, and patient transportation service. These made the PwD less stressed and influenced their everyday life positively. It could be concluded that the extent burden during the Covid-19 pandemic calls for extensive development of tailored support to better tackle the rapid changes that can occur in a society.
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| 8. |
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| 9. |
- Borg, Johan, et al.
(författare)
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Experiences of Assistive Products and Home Care among Older Clients with and without Dementia in Sweden
- 2022
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1661-7827 .- 1660-4601. ; 19:19, s. 12350-12350
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Tidskriftsartikel (refereegranskat)abstract
- The purpose was to compare selection, use and outcomes of assistive products among older home care clients with and without dementia in Sweden, and to explore the relations between the use of assistive products and perceptions of home care, loneliness and safety. Self-reported data from 89,811 home care clients aged 65 years or more, of whom 8.9% had dementia, were analysed using regression models. Excluding spectacles, 88.2% of them used assistive products. Respondents without dementia were more likely to use at least one assistive product but less likely to use assistive products for remembering. Respondents with dementia participated less in the selection of assistive products, used less assistive products, and benefited less from them. Users of assistive products were more likely to be anxious and bothered by loneliness, to feel unsafe at home with home care, to experience that their opinions and wishes regarding assistance were disregarded by home care personnel, and to be treated worse by home care personnel. The findings raise concerns about whether the needs for assistive products among home care clients with dementia are adequately provided for. They also indicate a need to strengthen a person-centred approach to providing home care to users of assistive products.
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| 10. |
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| 11. |
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| 12. |
- Craftman Gransjön, Åsa, et al.
(författare)
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Outcomes of education in using music and caregivers singing as a tool to person centered care when working with persons with dementia
- 2018
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Konferensbidrag (refereegranskat)abstract
- Background: A major concern in dementia care is communication problems, and thus problems in interaction with caregivers. A result of that might be that the person with dementia (PWD) express resistance of aggressiveness. Different kind of music activities, especially the method Caregivers Singing (CS) - when caregivers sing for or together with persons with dementia during caring, has shown to reduce these expressions and increase communication and cooperation.Methods and aim: 30 professional caregivers at three nursing homes for persons with dementia participated in an education program with music and CS as a tool to person centered care. They participated in group discussions about their experiences of using CS as a method in their work. The discussions were recorded and analyzed with quali-tative content analysis aiming to explore their experiences and prefer-ences, as well as when it was preferable to use music and CS in their work with PWDs, and also what the outcomes were.Results: The analysis resulted in two themes; “To facilitate care-giving situations” which included CS at the most, and the caregivers described singing songs favorable for the PWD to calm upset PWDs down and increase cooperation. The other theme; “To increase togeth-erness”, included mostly background music that were preferred by the PWD. This opened up for memories, and social activities such as dancing.Conclusions: To educate caregivers in a structured way on how to use music and CS in their everyday work can be a way to reach person centered care for PWDs, and to facilitate problematic care situ-ations, as well as increase socialization and communication between PWDs and their caregivers.
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| 13. |
- Engström, Gabriella, et al.
(författare)
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Evaluation of communication behavior in persons with dementia during caregivers’ singing
- 2011
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Ingår i: Nursing Reports. - : MDPI AG. - 2039-4403 .- 2039-439X. ; 1:4, s. 15-20
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Tidskriftsartikel (refereegranskat)abstract
- 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
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| 14. |
- Engström, Gabriella, et al.
(författare)
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Humming as a potential tool for facilitating feeding situations between persons with dementia, and their caregiver. A single case study
- 2012
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Ingår i: Music and Medicine. - : International Association for Music and Medicine. - 1943-8621 .- 1943-863X. ; 4:4, s. 231-236
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Tidskriftsartikel (refereegranskat)abstract
- Persons with dementia (PWDs) have a major cognitive decline in the ability to meet universal self-care needs, including self-feeding and maintaining a sufficient intake of fluids and food. The aim was to describe whether caregivers’ humming during lunch situations affected eating and feeding problems in PWDs. An experimental single-case design was used, involving video observation. At baseline, PWDs were fed by their caregivers in the usual way and at intervention the PWDs were fed while a caregiver hummed. Analysis using the Edinburgh Feeding Evaluation (EdFED) showed that for Mrs Smith, the EdFED score decreased from a mean score of 14 at baseline to a mean score of 8.5 during the intervention. Mrs Green experienced a decrease in mean score from 12 at baseline to 8.5 during the intervention. This pilot study suggests that humming during lunch situations might enhance eating and feeding abilities for PWD and should be further studied
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| 15. |
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| 16. |
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| 17. |
- Håkansson Eklund, Jakob, 1971-, et al.
(författare)
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Empathy levels among nursing students : A comparative cross-sectional study.
- 2019
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Ingår i: Nursing open. - : Wiley. - 2054-1058. ; 6:3, s. 983-989
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Tidskriftsartikel (refereegranskat)abstract
- Aim: Empathy is a crucial component of the nurse-patient relationship, but knowledge is lacking as to when empathy develops during nursing education. The aim of the present study was to compare empathy levels at different stages of undergraduate nursing education and different master's nursing programmes.Design: The design was a comparative cross-sectional study.Methods: A total of 329 participants in Sweden, comprised of nursing students in their second and sixth semesters in an undergraduate nursing programme as well as master's nursing students, rated their own empathy using the Jefferson Scale of Physician Empathy.Results: Students in their sixth semester in an undergraduate nursing programme expressed more empathy than did students in their second semester and master's nursing students. Among the five master's programmes, public-health nursing students expressed the most empathy and intensive-care nursing students the least.
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| 18. |
- Johansson-Pajala, Rose-Marie, et al.
(författare)
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Anxiety and loneliness among older people living in residential care facilities or receiving home care services in Sweden during the COVID-19 pandemic : a national cross-sectional study
- 2022
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Ingår i: BMC Geriatrics. - : Springer Science and Business Media LLC. - 1471-2318. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Older people were subjected to significant restrictions on physical contacts with others during the COVID-19 pandemic. Social distancing impacts older people’s experiences of anxiety and loneliness. Despite a large body of research on the pandemic, there is little research on its effects on older people in residential care facilities (RCF) and in home care services (HCS), who are the frailest of the older population. We aimed to investigate the effect of the first wave of the COVID-19 pandemic in March-May 2020 on experiences of anxiety and loneliness among older people living in RCF or receiving HCS and the impact of the progression of the pandemic on these experiences.Methods: A retrospective cross-sectional design using data from the national user satisfaction survey (March − May 2020) by the Swedish National Board of Health and Welfare. Survey responses were retrieved from 27,872 older people in RCF (mean age 87 years) and 82,834 older people receiving HCS (mean age 84 years). Proportional-odds (cumulative logit) model was used to estimate the degree of association between dependent and independent variables.Results: Loneliness and anxiety were more prevalent among the older persons living in RCF (loneliness: 69%, anxiety: 63%) than those receiving HCS (53% and 47%, respectively). Proportional odds models revealed that among the RCF and HCS respondents, the cumulative odds ratio of experiencing higher degree of anxiety increased by 1.06% and 1.04%, respectively, and loneliness by 1.13% and 1.16%, respectively, for 1% increase in the COVID-19 infection rate. Poor self-rated health was the most influential factor for anxiety in both RCF and HCS. Living alone (with HCS) was the most influential factor affecting loneliness. Experiences of disrespect from staff were more strongly associated with anxiety and loneliness in RCF than in HCS.Conclusion: Older people in RCF or receiving HCS experienced increasing levels of anxiety and loneliness as the first wave of the pandemic progressed. Older people’ mental and social wellbeing should be recognized to a greater extent, such as by providing opportunities for social activities. Better preparedness for future similar events is needed, where restrictions on social interaction are balanced against the public health directives.
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| 19. |
- Johansson-Pajala, Rose-Marie, et al.
(författare)
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Trust and easy access to home care staff are associated with older adults' sense of security : a Swedish longitudinal study
- 2024
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Ingår i: Scandinavian Journal of Public Health. - 1403-4948 .- 1651-1905. ; , s. 36830-
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Tidskriftsartikel (refereegranskat)abstract
- AIM: Older adults are increasingly encouraged to continue living in their own homes with support from home care services. However, few studies have focused on older adults' safety in home care. This study explored associations between the sense of security and factors related to demographic characteristics and home care services.METHODS: The mixed longitudinal design was based on a retrospective national survey. The study population consisted of individuals in Sweden (aged 65+ years) granted home care services at any time between 2016 and 2020 (n=82,834-94,714). Multiple ordinal logistic regression models were fitted using the generalised estimation equation method to assess the strength of relationship between the dependent (sense of security) and independent (demographics, health and care-related factors) variables.RESULTS: The sense of security tended to increase between 2016 and 2020, and was significantly associated with being a woman, living outside big cities, being granted more home care services hours or being diagnosed/treated for depression (cumulative odds ratio 2-9% higher). Anxiety, poor health and living alone were most strongly associated with insecurity (cumulative odds ratio 17-64% lower). Aside from overall satisfaction with home care services, accessibility and confidence in staff influenced the sense of security most.CONCLUSIONS: We stress the need to promote older adults' sense of security for safe ageing in place, as mandated by Swedish law. Home care services profoundly influence older adults' sense of security. Therefore, it is vital to prioritise continuity in care, establish trust and build relationships with older adults. Given the increasing shortage of staff, integrating complementary measures, such as welfare technologies, is crucial to promoting this sense of security.
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| 20. |
- Karlsson, Jenny, et al.
(författare)
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Capturing the Unsaid : Nurses’ Experiences of Identifying Mental Ill-Health in Older Men in Primary Care—A Qualitative Study of Narratives
- 2021
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Ingår i: Nursing Reports. - Västerås : MDPI AG. - 2039-439X .- 2039-4403. ; 11:1, s. 152-163
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Tidskriftsartikel (refereegranskat)abstract
- This study describes nurses’ experiences in identifying mental ill-health in older men in primary care. The aging population is growing in Sweden and life expectancy is increasing. Age is a risk factor for mental ill-health. Older men are over-represented in deaths from suicide. When older men seek primary care, it is often because of somatic symptoms and rarely for mental health issues. A questionnaire with five open questions was answered by 39 nurses from 10 primary care centres and subjected to inductive qualitative content analysis. The results revealed a main theme—capturing the unsaid—and two categories: (1) feeling secure in the role, with three subcategories (building trust, daring to ask and interpreting signs); and (2) the need for resources, with two subcategories (time and continuity, and finding support in collaboration). The results confirm that nurses in primary care play a key role in identifying mental ill-health in older men. There is a need for resources in the form of time, competence and collaboration with other professionals and patients’ relatives. This strategy will establish best practice and provide evidence-based care to facilitate improvements in older men’s mental health and prevent suicide.
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| 21. |
- Lovenmark, Annica, et al.
(författare)
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That Mr. Alzheimer ... you never know what he's up to, but what about me? : A discourse analysis of how Swedish spouse cargivers can make their subject positions understandable and meaningful
- 2018
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 13:1
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Tidskriftsartikel (refereegranskat)abstract
- The spouses of people suffering from dementia are commonly first-in-line caregivers. This can have a considerable effect on their own lives, health and marriages. Several studies have focused on spouses' experiences, but very few have focused in any depth on their descriptions of themselves as subjects. Therefore, the aim of this study is to describe how spouse caregivers can express themselves when living with and caring for their partners with dementia. The study has a qualitative approach with a discourse analysis design and uses analytical tools such as rhetoric, subject positions and categorization. The results reveal three subject positions: as an actor, as a parent and as a survivor. The results show that as spouses struggle with external and internal clashes as subjects, they therefore need to develop coping strategies. They also experience pronounced loneliness and a risk to their own health. There is thus a need to support these spouses as individuals in their differing and changing needs.
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| 22. |
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| 23. |
- Lövenmark [Åberg] [Engström], Annica, 1967-, et al.
(författare)
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Being used for the greater good while fighting on the frontline : care staff's experiences of working with older people during the COVID-19 pandemic in Sweden
- 2024
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Ingår i: BMC Geriatrics. - : BMC. - 1471-2318. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- BAKGROUND: Worldwide, older people were more severely affected during the COVID-19 pandemic than others. In Sweden, those living in residential care facilities had the highest mortality rate, followed by those receiving home care services. The Swedish and international literature on the working environment for assistant nurses and care aides during the pandemic shows an increase in stress, anxiety, depression and post-traumatic stress syndromes. Care organisations were badly prepared to prevent the virus from spreading and to protect the staff from stress. In order to be better prepared for possible future pandemics, the health and well-being of the staff, the care of older people and the experiences of the staff both during and after a pandemic are important aspects to take into account. Therefore, this study aims to describe the experiences of assistant nurses and care aides working in the care of older people during the COVID-19 pandemic in Sweden, their working conditions and the impact all this had on their lives.METHODOLOGY: The study has a qualitative, descriptive design. The data was collected in four focus group interviews with 21 participants and analysed using qualitative content analysis.RESULTS: The results revealed the theme, Being used for the greater good while fighting on the frontline, which was then divided into three categories: portrayed as a risk for older people, not being valued and being burnt out. The worsening working conditions that the pandemic contributed to resulted in a high degree of stress and risk of burnout, with staff members both wanting to and actually leaving their employment. After the pandemic they felt forgotten again and left to cope in an even worse situation than before.CONCLUSIONS: The pandemic had a major effect on assistant nurses and care aides in terms of their working environment and their private lives. To be better prepared for future pandemics or disasters, organisations with responsibility for the care of older people will need to ensure that their staff have the necessary competencies and that there is adequate staffing in place. This also means that adequate government funding and multiple interventions will be needed.
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| 24. |
- Marmstål Hammar, Lena, 1979-, et al.
(författare)
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Being ‘alone’ striving for belonging and adaption in a new reality : The experiences of spouse carers of persons with dementia
- 2021
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 20:1, s. 273-290
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Tidskriftsartikel (refereegranskat)abstract
- Background and aimSpouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers’ experiences of caring for a partner with dementia, their everyday life as a couple and their support needs.MethodsNine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis.ResultsThe analysis resulted in one overall theme Being ‘alone’ striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship.ConclusionsThe training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple’s relationship for their mutual well-being.
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| 25. |
- Marmstål Hammar, Lena, 1979-, et al.
(författare)
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Being meet by dignity and respect in home care service- perceptions of persons with dementia
- 2020
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Konferensbidrag (refereegranskat)abstract
- IntroductionStudies on the quality of home care services (HCS) offered to persons with dementia (PwD) reveal prevalence of unmet needs and dissatisfaction concerning encounters and lack of relationships with staff. The aim of this study was to enhance the knowledge about the perceptions from PwD regarding dignity and respect in relation to HCS staff over time.Material and methodsA mixed longitudinal study was designed to study any trend, over the period between 2016 and 2018, and to compare the results between PwD (case) and persons without dementia (control) living at home with HCS. An existing yearly HCS quality assessment survey of the Swedish National Board of Health and Welfare was used. Over the study period, 271.915 (PwD = 8.1%) respondents (all aged 65+ years) completed the survey. The focus was on questions concerning dignity and respect. We applied GEE logistic, and cumulative logit regression model to estimate any effects and trends of interest, after controlling for the effect of age, gender, health status, and the amount of HCS hours.ResultsThe results showed a significant 3-10% lower odds (and cumulative odds) for PwD to be satisfied on these issues, compared with control individuals. Also, that both groups’ experiences of satisfaction decreased over the years from 2016 to 2018. ConclusionsOur findings indicate that Swedish HCS will not reach the WHOs global action plan for PwD by 2025. HCS organization needs to shift from a task-oriented system to a person-centered approach by setting each older person in focus.
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