Family carers’ perspectives on care for older people living with dementia: interactions and involvement with health services, and the role of health literacy

OsloMet Avhandling 2021 nr 5, Kristin Häikiö.T hesis for the degree of Philosophiae Doctor. Faculty of Health Sciences. OsloMet – Oslo Metropolitan University. Spring 2021 ISSN 2535-471X (trykket)/ISSN 2535-5454 (online)ISBN 978-82-8364-284-1 (trykket)/ISBN 978-82-8364-294-0 (online

Family carers’ perspectives on care for older people living with dementia: interactions and involvement with health services, and the role of health literacy

Background: Care policies worldwide aim to control care expenses and provide more care in peoples’ homes, increasing the importance of informal care and the role of family carers’. This Ph.D. project aims to better our understanding of family carers’ perspectives on care provision to older people living with dementia, and how the interplay between health services and informal carers may be enhanced to improve care provision. Method: The study followed an exploratory sequential mixed method design: Substudy 1 was based on in-depth, semi-structured interviews of 23 family carers for older people living with dementia, to explore experiences with care provision. Transcribed interviews were coded and analyzed in four steps, informed by hermeneutics, phenomenology, and thematic analysis. Building on findings from Substudy 1, Substudy 2 comprised a quantitative survey in a larger sample of 188 family carers. Results were analyzed using descriptive statistics, and multiple linear regression models were used to test assumptions that health literacy could predict carer burden, health-related quality of life, and time spent on informal care. Results: Analysis of the interviews highlight how family carers may identify care needs unmet by health services, and indicate four preventive practices employed in their care, aiming to prevent physical, emotional, economic, and relational harm. In interactions with health services, family caregivers resort to two broad involvement strategies: (1) being “the hub in the wheel”, through conciliatory co-ordination; and (2) “getting the wheel rolling”, using purposeful and assertive acts to improve leverage. Both strategies have costs and benefits, and use depends on available personal resources. The survey participants displayed high levels of health literacy, a partially trainable personal resource. Regression analyses indicate that higher health literacy was associated with lower carer burden, higher healthrelated quality of life, and less time spent on informal care. Conclusion: Family cares can be valuable resources in care provision for older people living with dementia, adding important perspectives on safety and quality of care, and facilitating co-ordination and utilization of resources. Strong partnerships between formal and informal care may benefit from awareness of interaction challenges, including involvement strategies; differences in perspectives and motivations, including preventive practices; and differences in personal resources, such as different levels of health literacy

Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Introduction: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method: We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings: In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion: This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time

Family carers’ involvement strategies in response to sub-optimal health services to older adults living with dementia – a qualitative study

Background: While dementia policy strategies emphasize the importance of partnerships between families and formal carers to provide tailored care and effectively allocate community resources, family carers often feel left out or excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studies have investigated how family carers seek to involve themselves when they experience sub-optimal services, and how their strategies may depend on different considerations and personal abilities. Methods: Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with, perspectives on, contributions to, and interactions with healthcare services provided to older adults living with dementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneutic and phenomenological methodology. Results: Two main involvement strategies were identified: 1) being “the hub in the wheel” and 2) getting the wheel rolling. The first strategy was used to support and complement health services, while the second was used to add momentum and leverage to arguments or processes. The two main strategies were used differently among participants, in part due to differences in personal resources and the ability to utilize these, but also in light of family carers’ weighing conflicting concerns and perceived costs and benefits. Conclusions: Awareness and acknowledgment of family carers’ strategies, personal resources, and considerations may help policymakers and healthcare personnel when they build or maintain good partnerships together with family carers. A better understanding of family carers’ own perspectives on carer involvement is a necessary precursor to developing good care partnerships

Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

IntroductionFamily carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people's ability to access health services, and navigate the healthcare system. This study's aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care.MethodWe designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad.FindingsIn a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables.ConclusionThis is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers' HL may have potential to enhance their ability to provide sustainable care over time

Dementia and patient safety in the community: a qualitative study of family carers’ protective practices and implications for services

Background Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients’ homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community. Methods This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants’ experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis. Results The ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs.Conclusions When family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers

Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia?

Introduction: Family carers are cornerstones in the care of older people living with dementia. Family carers report extensive carer burden, reduced health-related quality of life (HRQoL), and extensive time spent on informal care (Time). Health literacy (HL) is a concept associated with people’s ability to access health services, and navigate the healthcare system. This study’s aim was to investigate HL among family carers, and investigate the associations between HL and carer burden, HRQoL, and Time spent on informal care. Method: We designed a self-administered survey comprising validated instruments, including the Health Literacy Scale (HLS-N-Q12) to measure HL, Relative Stress Scale (RSS) to measure carer burden, the EQ-5D-5L instrument to measure HRQoL, and some modified questions from the Resource Utilization in Dementia (RUD) questionnaire to measure time spent on informal care (Time). Descriptive analysis in addition to bivariate and multiple linear regressions were undertaken. In multiple linear regression analysis, we used HL as the independent variable to predict the outcomes (carer burden, HRQoL, Time). Analyses were adjusted for the effects of explanatory independent variables: age, gender, education levels, urban residency, having worked as health personnel, caring for someone with severe/mild dementia, and being born abroad. Findings: In a non-probability sample of 188 family carers from across Norway, most of them female and over the age of 60, we found high levels of HL. In the bivariate analysis, carer burden and HRQoL (EQvalue) showed significant associations with HL. In the multiple regression analyses, HL was statistically significantly associated with carer burden (B = -0.18 CI:-0.33,-0.02 p = 0.02), HRQoL (EQvalue: B = 0.003 with 95% CI: 0.001, 0.006 p = 0.04), and Time (B = -0.03 with 95% CI: -0.06, 0.000, p = 0.046), after adjusting for the effect of independent variables. Conclusion: This is one of the first studies to investigate the associations between HL and different outcomes for family carers of older people living with dementia. Additional research into the associations identified here is needed to further develop our understanding of how to support family carers in their roles. Targeted support that increases family carers’ HL may have potential to enhance their ability to provide sustainable care over time

Family carers’ involvement strategies in response to sub-optimal health services to older adults living with dementia – a qualitative study

Background:While dementia policy strategies emphasize the importance of partnerships between families andformal carers to provide tailored care and effectively allocate community resources, family carers often feel left outor excluded. Poor communication has been identified as one reason for the lack of good partnerships. Few studieshave investigated how family carers seek to involve themselves when they experience sub-optimal services, andhow their strategies may depend on different considerations and personal abilities.Methods:Qualitative in-depth interviews were conducted with 23 family carers to explore their experiences with,perspectives on, contributions to, and interactions with healthcare services provided to older adults living withdementia. To capture nuances and variations, a semi-structured interview guide was used. Interviews were audio-recorded and transcribed verbatim. A four-step analysis of the transcripts was conducted, informed by hermeneuticand phenomenological methodology.Results:Two main involvement strategies were identified: 1) being“the hub in the wheel”and 2) getting thewheel rolling. The first strategy was used to support and complement health services, while the second was usedto add momentum and leverage to arguments or processes. The two main strategies were used differently amongparticipants, in part due to differences in personal resources and the ability to utilize these, but also in light offamily carers’weighing conflicting concerns and perceived costs and benefits.Conclusions:Awareness and acknowledgment of family carers’strategies, personal resources, and considerationsmay help policymakers and healthcare personnel when they build or maintain good partnerships together withfamily carers. A better understanding of family carers’own perspectives on carer involvement is a necessaryprecursor to developing good care partnerships

Dementia and patient safety in the community: a qualitative study of family carers’ protective practices and implications for services

Background: Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients’ homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community. Methods: This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants’ experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis. Results: The ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs. Conclusions: When family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers

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