ABSTRACT
OBJECTIVES: The purpose of the study was to examine and compare the dementia-related discourse and language used by people with mild neurocognitive disorder (MND), their family members, and family caregivers of people with Alzheimer's disease in Israel and Germany. DESIGN: This secondary qualitative analysis included focus groups and semistructured interviews. Thematic analysis was used to reveal the main discourses and stigmatic language used regarding dementia and people with dementia. SETTING: Israeli and German stakeholders. PARTICIPANTS: Forty-four Israeli and 44 German participants: 28 people with MND, 20 family members of people with MND, and 40 family caregivers of people with Alzheimer's disease. RESULTS: Two main discourses were identified: the tragedy and the biomedical discourse. The tragedy discourse included several subthemes: "Dementia as the worst-case scenario," "Nothing can be done about dementia," and "People with dementia are not human." The biomedical discourse stressed pathologic aspects of the condition. Similarities and differences were found between Israeli and German participants. CONCLUSIONS: The study indicates that, despite culture and language differences, the use of stigmatic discourse and stigmatizing language is common among people with close exposure to dementia in Israel and Germany. Efforts should be increased to develop a person-centered and dementia-friendly language.
Subject(s)
Alzheimer Disease , European People , Humans , Alzheimer Disease/psychology , Caregivers/psychology , Israel , LanguageABSTRACT
The body of knowledge regarding dementia worry - people's sense of threat about developing dementia - is still limited. Additional studies are essential to better understand levels of dementia worry and its correlates, especially in cross-cultural contexts. To reach this goal, it is critical to use structured and valid measures to assess dementia worry and to verify these measures in different languages. Therefore, the aim of the current study was to evaluate the psychometric properties of the Hebrew version of the Modified Dementia Worry Scale (the H-MDWS). A cross-sectional study using an online survey was conducted with 368 Israeli laypeople who were 18 years of age or older (53% women, 76% Jewish, mean age = 40, average years of education = 14). In addition to the H-MDWS, participants were asked to report their fear of Alzheimer's disease (using a dichotomous single item), stigma, health anxiety, and demographic characteristics. Reliability analyses showed that the Cronbach's alpha for the H-MDWS was excellent (α = 0.95). The results of the factor analysis demonstrated that the scale has a unidimensional structure, explaining over 66% of the variance. In addition, we found significant correlations between fear of developing Alzheimer's disease, stigma, and health anxiety, on the one hand, and the H-MDWS on the other. The H-MDWS is a reliable and valid tool for assessing dementia worry. The validation of the tool not only allows expanding the body of knowledge related to dementia worry, but will also allow professionals and caregivers to identify people who are at risk of reporting dementia worry and develop interventions accordingly.
Subject(s)
Alzheimer Disease , Humans , Female , Adolescent , Adult , Male , Cross-Sectional Studies , Reproducibility of Results , Anxiety/diagnosis , Surveys and Questionnaires , PsychometricsABSTRACT
BACKGROUND: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner. METHODS: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction. DISCUSSION: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. TRIAL REGISTRATION: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.
Subject(s)
Cross-Cultural Comparison , Dementia , Humans , Aged , Cross-Sectional Studies , Pilot Projects , Death , Dementia/therapyABSTRACT
BACKGROUND AND OBJECTIVES: Printed and social media, as well as professional and scholarly platforms, have extensively discussed the proliferation of ageism during the coronavirus disease 2019 (COVID-19) pandemic. However, no study has systematically examined the body of knowledge on the topic. Framed around the characteristics of ageism in general, the aim of this review was to identify and characterize the conceptual and methodological underpinnings of the global, peer-reviewed, and empirical literature on ageism during COVID-19. RESEARCH DESIGN AND METHODS: We conducted a scoping review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, using PubMed, CINAHL, AgeLine, and PsycINFO. Quantitative and/or qualitative, English-language, and peer-reviewed articles were included. Data were tabulated and synthesized. RESULTS: Thirty six articles examining ageism during the COVID-19 pandemic met inclusion criteria. Most were quantitative (64%) and cross-sectional (81%). The level, correlates, and consequences of ageism during the pandemic were similar to the ones reported before it. Studies about ageism during COVID-19 had similar conceptualization and measurement problems to those before the pandemic. DISCUSSION AND IMPLICATIONS: Empirical studies did not find ageism during COVID-19 to be a unique phenomenon, as suggested by the media. More theoretically sound and methodologically rigorous studies, using longitudinal designs and validated unique measures are needed to examine this unique phenomenon.
Subject(s)
Ageism , COVID-19 , Humans , COVID-19/epidemiology , Pandemics , Cross-Sectional Studies , Empirical ResearchABSTRACT
BACKGROUND: Dementia worry is a widespread phenomenon and the most common emotional reaction elicited by the threat of developing dementia in the future. The cultural factors of dementia worry have not been examined widely, although dementia can be perceived differently between cultures and lead to varying levels of dementia worry. The purpose of this study was to examine the level of dementia worry and factors associated with it cross-nationally in Israel and Australia. METHODS: A cross-sectional, online survey was conducted with two age-matched adult samples (447 participants in Israel and 290 in Australia). The primary outcome measure was the 12-item Dementia Worry Scale. RESULTS: Israeli participants (mean age = 42.5 years; 50.1% female) reported statistically significantly (p < 0.05) higher levels of concern about developing dementia in comparison to Australian participants (mean age = 43.7 years; 49.8% female). Increased ageism and increased perceptions about the likelihood of developing dementia were the most important factors associated with increased worry. CONCLUSIONS: Our findings suggest that country may not be the best criterion to assess cultural differences and should be accompanied by the participants' assessment of their cultural tendencies. Our study also stresses the importance of conceptualizing and assessing affective and cognitive aspects of dementia worry, as people from different cultures might perceive dementia worry cognitively differently but affectively similar and vice-versa.
Subject(s)
Dementia , Adult , Australia/epidemiology , Cognition , Cross-Sectional Studies , Dementia/complications , Dementia/epidemiology , Female , Humans , Israel/epidemiology , MaleABSTRACT
Background: Completing advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for end-of-life care of people living with dementia. However, research deciphering the reasoning behind the decision to complete or not advance directives in the case of dementia remains limited, especially among people pertaining to different majority/minority groups. Objectives: To explore the motivations of people without dementia in Israel to complete or not to complete advance directives and to compare these motivations among the majority veteran Jewish group, the minority Jewish Former Soviet Union immigrant group, and the minority Arab group. Methods: This qualitative study used purposive sampling and focus groups with discussions elicited by a vignette. A total of 42 Israeli people without dementia participated in 6 focus groups: two with veteran Jews (n = 14), two with Jewish immigrants from the Former Soviet Union (n = 14), and two with Arabs (n = 14). The analysis followed recommended steps for thematic content analysis. Results: Four overarching themes were identified: (1) the meaning of dementia-related advance directives, (2) motivations for willingness to complete advance directives, (3) motivations for not being willing to complete advance directives, and (4) ethical dilemmas. Some of the themes were common to all groups, while others were informed by the groups' unique characteristics. Participants displayed a lack of knowledge and misunderstanding about advance directives, and central concepts such as autonomy and competence. Furthermore, stigmatic images of dementia and of the person with the diagnosis were associated to participants' motivations to complete advance directives. Conclusions: There is need to expand comparative research among culturally and socially similar and dissimilar groups within a country as well as between countries in order to better guide public health efforts to increase the rates of advance directives completion. Special attention should be paid to decreasing stigmatic beliefs and understanding unique cultural values and motivations.
ABSTRACT
OBJECTIVES: The COVID-19 pandemic has provided a rich environment for ageist attitudes towards both older and younger people. However, publications on ageism during the outbreak have been mostly non-empirical and have concentrated on ageist beliefs directed towards older people. To overcome these limitations, we examined empirically the prevalence and the determinants of ageism towards older and younger people in the wake of COVID-19. STUDY DESIGN: A cross-sectional study using an online survey was conducted with 503 Israeli adults (51.9% male, 79.5% Jews, mean age 47 years). MAIN MEASURES: We used a structured questionnaire that measured the following: COVID-19 ageism towards older people, COVID-19 ageism towards younger people, stereotyping, the experience of discrimination, perceived fears about contracting COVID-19, subjective knowledge about COVID-19, and sociodemographic characteristics. RESULTS: Overall, participants reported a relatively low level of COVID-19 ageism towards older people but a significantly higher level of COVID-19 ageism towards younger people. Hierarchical regressions revealed that negative age stereotypes were the most important determinants of both types of ageism. Sociodemographic variables (including age and majority/minority) were significant determinants only for COVID-19 ageism towards older people. That is, older and Jewish participants reported lower levels of this type of ageism. CONCLUSIONS: Our findings demonstrate that negative age-related stereotypes have played a central role in ageist beliefs towards both older and younger people during the COVID-19 crisis. It is recommended that the public and scientific media start disseminating messages aimed at reducing rather than increasing negative stereotypes directed towards younger and older people.
Subject(s)
Ageism , COVID-19 , Aged , Aging , Cross-Sectional Studies , Female , Humans , Male , Pandemics , SARS-CoV-2ABSTRACT
OBJECTIVES: Providing care for family members of individuals with dementia can be accompanied by a myriad of emotions, usually involving negative as well as positive feelings, or "ambivalent feelings." Recent studies conducted among family caregivers of people with dementia have shown ambivalent feelings to be associated with serious psychological consequences, such as increased depression. However, little is known about the path leading from ambivalent feelings to depression. Thus, the aim of this study was to examine the interplay of ambivalent feelings and depression with family caregivers' psychosocial resources-that is, their coping strategies and social support. METHODS: A cross-sectional study using face-to-face interviews (via structured questionnaire) was conducted with 175 Israeli Arab family caregivers (adult children and spouses) of elderly people with Alzheimer's disease (87.4% female; 72% adult children; mean age = 54.28). RESULTS: Overall, the participants reported a mild level of depression (mean = 7.93; SD = 4.30; range 0-15) and a moderate level of ambivalent feelings (mean = 1.63; SD = 1.04; range 0-3). Additionally, as expected, ambivalent feelings made a unique-although modest-contribution, adding an additional 6% (p < 0.001) to the explanation of depression (R2 = 0.56, p<0.001). Whereas, neither problem-focused coping nor emotion-focused coping played a significant role in mediating the relationship between ambivalent feelings and depression, social support did mediate the relationship between these variables. CONCLUSIONS: Our findings show that strengthening and expanding social networks among Israeli caregivers of people with Alzheimer's disease can minimize the impact of experiences of emotional feelings on depression.
Subject(s)
Alzheimer Disease , Dementia , Adult , Aged , Female , Humans , Male , Middle Aged , Adaptation, Psychological , Alzheimer Disease/psychology , Arabs , Caregivers/psychology , Cross-Sectional Studies , Dementia/psychology , Depression , Emotions , Israel , Adult ChildrenABSTRACT
OBJECTIVES: Many studies have attempted to identify the factors that are associated with caregiver burden among family caregivers of people with Alzheimer's disease (AD), because of its plethora of negative consequences. One unique factor that has been investigated recently is family stigma. However, the path leading from family stigma to caregiver burden has not been thoroughly studied. Hence, this study had two main objectives. The first was to examine whether family stigma was a predictor of caregiver burden among Israeli Arab family caregivers of a person with AD. The second was to examine the interplay of family stigma and caregiver burden with coping strategies and social support. METHODS: Structured face-to-face interviews were conducted with 175 Israeli Arab family caregivers (adult children and spouses) of elderly people with AD (87.4% female; 71.4% adult children; mean age = 54.28). RESULTS: Overall, the participants reported moderate levels of caregiver burden and family stigma. Additionally, as expected, family stigma made a unique - although modest - contribution to the explanation of caregiver burden. Whereas neither problem-focused coping nor emotion-focused coping played a significant role in mediating the relation between family stigma and caregiving burden, social support did mediate the relation between these variables. CONCLUSIONS: Our findings reveal how social support is important as a specific way to reduce the impact of family stigma on caregiver burden.
Subject(s)
Alzheimer Disease , Caregivers , Adaptation, Psychological , Aged , Arabs , Caregiver Burden , Female , Humans , Israel , Male , Social SupportABSTRACT
BACKGROUND: The number of studies that have assessed cognitive illness representations among people diagnosed with depression, and their relationship to health outcomes, has clearly grown. Nevertheless, the relationship between cognitive illness representations and health-related quality of life (HRQoL) has received very little research attention. AIMS: This study examined cognitive illness representations, based on the self-regulation model (SRM), and the contribution of each dimension of these cognitive illness representations to health-related quality of life (HRQoL) among Israeli Arabs diagnosed with depression. METHODS: A convenience sample of 160 Israeli Arabs with depression completed measures of cognitive illness representations (identity, timeline, consequences, personal control, treatment control, and coherence), HRQoL, and sociodemographic and health characteristics. RESULTS: Participants reported high levels of negative perceptions in the identity, timeline, and consequences dimensions, and moderate levels in the dimensions of personal control, treatment control, and coherence. Also, participants reported low levels of HRQoL. Identity, consequences, and coherence were found to be the main determinants of HRQoL. CONCLUSION: This study underlines the crucial role of the identity, consequences, and coherence dimensions in the HRQoL of individuals diagnosed with depression. The findings indicate that clinical interventions targeting cognitive illness representations of individuals with depression, and in particular identity, consequences, and coherence, might be helpful in improving the HRQoL of this population.
Subject(s)
Arabs , Quality of Life , Cognition , Depression/diagnosis , Depression/psychology , Humans , IsraelABSTRACT
Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer's disease at a presymptomatic (preclinical) stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel (N=88; 44 participants in each country). Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results.
Subject(s)
Dementia , Motivation , Humans , Israel , Germany , Beneficence , Dementia/diagnosisABSTRACT
AIM: To investigate perceptions of informal caregivers of community-dwelling persons with dementia (PwD) regarding health and social care services and their correlates using the Behavioral Model of Healthcare Utilization as the theoretical framework. METHODS: This was a cross-sectional study using a purposive sampling technique to identify, through community-based health and social care services, caregivers of PwD. Face-to-face interviews were conducted with 118 informal caregivers (78.8% female, mean age = 58.9 years) via a structured questionnaire. RESULTS: Three 'Perceptions of Services' subscales were identified: 'Availability and Adequacy of Services' (AAS), 'Physicians' Competence' (COMP), and 'Professionals' Behavior' (PB). Predisposing factors (gender, employment, familism) and enabling/impeding factors (caregiving impedes work, quality of life aspects - environment and social relationships, information about dementia) were significant correlates of the AAS and COMP subscales. Familism was negatively associated with the AAS subscale. PwD's perceived declined physical and behavioral functioning was related to worse perceptions regarding professionals' behavior (PB) toward the PwD. CONCLUSION: Understanding the factors associated with caregivers' perceptions of health and social care community services may guide the development of interventions that facilitate the appropriate use of those services, provide increased support to PwD and their caregivers, and delay potential institutionalization.
Subject(s)
Caregivers , Dementia , Cross-Sectional Studies , Female , Greece , Humans , Male , Perception , Quality of LifeABSTRACT
Efforts to control the spread of the novel Coronavirus (COVID-19) pandemic include drastic measures such as isolation, social distancing, and lockdown. These restrictions are accompanied by serious adverse consequences such as forgoing of healthcare. The study aimed to assess the prevalence and correlates of forgone care for a variety of healthcare services during a two-month COVID-19 lockdown, using Andersen's Behavioral Model of Healthcare Utilization. A cross-sectional study using computerized phone interviews was conducted with 302 Israeli Jewish participants aged 40 and above. Almost half of the participants (49%) reported a delay in seeking help for at least one needed healthcare service during the COVID-19 lockdown period. Among the predisposing factors, we found that participants aged 60+, being more religious, and reporting higher levels of COVID-19 fear were more likely to report forgone care than younger, less religious and less concerned participants. Among need factors, a statistically significant association was found with a reported diagnosis of diabetes, with participants with the disease having a considerably higher likelihood of forgone care. The findings stress the importance of developing interventions aimed at mitigating the phenomenon of forgoing care while creating nonconventional ways of consuming healthcare services. In the short term, healthcare services need to adapt to the social distancing and isolation measures required to stanch the epidemic. In the long term, policymakers should consider alternative ways of delivering healthcare services to the public regularly and during crisis without losing sight of their budgetary consequences. They must recognize the possibility of having to align medical staff to the changing demand for healthcare services under conditions of health uncertainty.
Subject(s)
COVID-19/epidemiology , Facilities and Services Utilization/trends , Adult , Age Factors , Aged , Aged, 80 and over , Attitude , COVID-19/psychology , Culture , Female , Health Services/statistics & numerical data , Humans , Israel , Jews/psychology , Jews/statistics & numerical data , Male , Middle AgedABSTRACT
Background There is no doubt that people with dementia can greatly benefit from the COVID-19 vaccine, especially as they are at an increased risk of developing severe complications, including long hospitalizations and high mortality rates, as a result of being infected by the virus. However, they might need the encouragement of health professionals to become vaccinated. Professionals' preferences regarding vaccination for this group are, therefore, extremely important to increase the use of this preventive measure. Aims 1. To examine hospital staff members' preferences for COVID-19 vaccination to people with or without Alzheimer's disease (AD) while differentiating between a young and an old person with the disease. 2. To examine the factors associated with these preferences. Methods A cross-sectional survey using a structured and anonymous self-report questionnaire was conducted among a sample of 278 Israeli medical staff (nurses, physicians, and paraprofessionals) working at a general hospital. The data were collected in August 2021. Results Overall, the majority (68.4%) of participants chose the 80-year-old patient with a diagnosis of AD to be the last to receive the vaccine. The percentage of participants who preferred to give the vaccine first to the 55-year-old patient with AD was almost equal to the percentage of those who preferred giving the vaccine first to the 80-year-old patient who was cognitively intact. Religion and beliefs about susceptibility to contracting COVID-19 were significantly associated with participants' preferences. Conclusion Our results suggest that hospital staff members find it difficult to decide whether age or cognitive status should be the main factor in deciding which patient should receive the vaccine first. Therefore, there is a need to implement several policy and practical steps in hospitals to assist the medical staff in such decision-making processes.
Subject(s)
Alzheimer Disease , COVID-19 , Vaccines , Aged, 80 and over , COVID-19 Vaccines , Cross-Sectional Studies , Humans , Personnel, Hospital , SARS-CoV-2ABSTRACT
BACKGROUND: Despite the increasing amount of research on dementia stigma, there is a dearth of cross-national studies conducted on this subject. This is surprising since the experience of stigma is closely associated to socio-cultural aspects. OBJECTIVE: The present study intended to expand knowledge about the impact of culture on dementia stigma by comparing the level and correlates of stigmatic beliefs about dementia among the general public in Israel and Australia. METHODS: A cross-sectional study using an online survey was conducted with two age-matched samples: 447 adults in Israel and 290 adults in Australia. RESULTS: Overall, dementia stigma was moderate in both countries. However, the level of dementia stigma was significantly higher in Australia than in Israel. Lower levels of subjective knowledge and higher levels of ageism were associated with increased levels of stigmatic beliefs in both countries. Gender was a significant correlate of dementia stigma, with male participants reporting higher levels of public stigma than women, although this gender difference was mainly driven by the Australian sample. CONCLUSION: Our findings indicate that providing knowledge and decreasing ageist attitudes should be key considerations in dementia awareness and stigma reduction campaigns despite the cultural context. In addition, developing gender-specific messages should be considered as a way of improving the effects of such campaigns.
Subject(s)
Ageism , Cross-Cultural Comparison , Dementia/psychology , Social Stigma , Adult , Australia , Cross-Sectional Studies , Female , Humans , Israel , Male , Sex Factors , Surveys and QuestionnairesABSTRACT
The COVID 19 pandemic has led to an increase in the number of patients in need of ventilation. Limitations in the number of respirators may cause an ethical problem for the medical and nursing staff in deciding who should be connected to the available respirators. We conducted a cross-sectional survey among a convenience sample of 278 healthcare professionals at one medical center. They were asked to rank their preference in respirator allocation to three COVID-19 patients, one 80 years old with no cognitive illness, one 50 years old with Alzheimer's disease (AD), and one 80 years old with AD. Most respondents (75%) chose the 80-year-old AD patient as last preference, but were evenly divided on how to rank the other two patients. Medical staff have difficulty deciding whether age or cognitive status should be the deciding factor ventilator allocation. Determination of a set policy would help professionals with these decisions.
Subject(s)
Alzheimer Disease/complications , COVID-19/therapy , Health Care Rationing/methods , Personnel, Hospital/psychology , Ventilators, Mechanical , Aged, 80 and over , COVID-19/epidemiology , Choice Behavior , Cross-Sectional Studies , Humans , Pandemics , SARS-CoV-2ABSTRACT
The present study aimed to assess dementia caregivers' reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen's Behavioral Model of Healthcare Utilization. A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers' reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers' forgone care and feelings of loneliness and perceptions of the care-receiver's cognitive functioning were associated with care-receivers' forgone care. Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.
Subject(s)
COVID-19 , Dementia , General Practitioners , Caregivers , Communicable Disease Control , Cross-Sectional Studies , Family , Female , Humans , Israel , Male , Middle Aged , SARS-CoV-2 , SpecializationABSTRACT
Providing care to people with Parkinson's disease (PD) poses challenges for family carers, including experiencing stigmatic beliefs -i.e., family stigma. However, to the best of our knowledge, there is no empirical study examining the stigmatic experiences of family members of people with PD. This was the aim of the present study. Three focus groups with 22 Israeli spouses of people with PD were conducted. Data were analyzed using theory-led thematic analysis. Overall, the spouses in our study shared mainly experiences of the stigma attached to the illness and/or to their loved ones, and not to themselves as carers. Three major themes emerged: the stereotypes that typify PD, stigmatizing behaviors towards the person with the disease, and structural stigma. Our findings highlight the profound stigma confronting carers of persons with PD, particularly when it comes to structural stigma.
Subject(s)
Caregivers , Parkinson Disease , Family , Humans , Perception , SpousesABSTRACT
Culture change models are intended to improve the quality of life and care of nursing home residents. Using longitudinal qualitative methodology, this study evaluated the effectiveness of implementing culture change on the main stakeholders living and working in an Israeli nursing home. Eight focus groups with nursing home residents, family members and staff members (N = 57) were conducted at two-time points: one year after and two years after implementing a culture change model. Using thematic content analysis and comparing the experiences of each group and across time, the results revealed that implementing culture change in a nursing home is a complex process, which requires am adaptation in the values, expectations, and perceptions of care of all those involved. Particular attention should be paid to the unique needs of each stakeholder group, while ensuring their engagement and cooperation in the change process.