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Differences in social support of caregivers living with partners suffering from COPD or dementia
Abstract
nordtug b., krokstad s., sletvold o. & holen a. (2013) Differences in social support of caregivers living with partners suffering from COPD or dementia. International Journal of Older People Nursing 8, 93–103 doi: 10.1111/j.1748-3743.2011.00302.x
Background. Future patients with chronic diseases will probably remain longer in their homes. To enable family caregivers to meet these challenges, public services and informal support are essential.
Objectives. This study compared social support between home-dwelling caregivers of partners with chronic obstructive pulmonary disease or dementia.
Methods. A cross-sectional study of 206 caregivers. Professional aid was quantified by the services utilised. Informal support from family and friends was rated by the number of helping persons and the degree of social withdrawal. The Medical Outcomes Study Social Support Survey Form captured perceived social support.
Results. For both diseases, increased severity correlated with more utilisation of professional aid. The chronic obstructive pulmonary disease group perceived more social support, reported less social withdrawal and higher numbers of helping persons. Ill partners’ aggressive behaviour reduced perceived support. The use of professional aid was negatively associated with the ill partner’s level of self-care, and positively correlated with social withdrawal. Professional aid was more utilised by the dementia group and by men.
Conclusions. Differences in caregivers’ needs for social support were related to their partner’s disease.
Implications for practice. Counteracting social withdrawal, considering type of illness and gender differences may increase the quality of informal care.
... Moreover, another study reported that as dementia progresses, caregivers experience social withdrawal and need more professional help (84). In other words, in the context of advanced dementia, social withdrawal limits the support the caregivers can receive from other sources and requires and demands more support from doctors. ...
... Moreover, another study reported that as dementia progresses, caregivers experience social withdrawal and need more professional help (84). In other words, in the context of advanced dementia, social withdrawal limits the support the caregivers can receive from other sources and requires and demands more support from doctors. ...
... Caregivers' social support was significantly correlated with their self-rated health (Xian & Xu, 2019), and caregivers showed more positive attitudes towards caregiving activities when they were more satisfied with the social support they received (Lee & Choi, 2013). Also, healthy caregivers were observed to have good social relationship networks, but ill family members lacked this social support network (Nordtug et al., 2013). Social support was also shown to be associated with burden and depression in spouse caregivers (McAuliffe et al., 2018), and it was significantly negatively related to the risk of cerebral vascular disease in family caregivers of patients with dementia . ...
Aim
This study aimed to describe levels of social support and explore the factors predictive of social support for Chinese family caregivers of patients with dementia.
Background
Social support levels and their predictive factors in Chinese dementia caregivers have not been well documented, which need to be further clarified to provide a basis for creating effective social support strategies.
Methods
This was a cross‐sectional study with 91 participants who completed a demographic questionnaire and the Social Support Rating Scale from 2015 to 2016.
Results
Chinese family caregivers of patients with dementia received moderate social support. Caregivers' subjective support domain scores and support utilization domain scores were significantly lower than those of the normal Chinese population, whereas caregivers' total social support scores were higher than those of the normal Chinese population. Family caregivers' monthly household income, educational level and place of residence were predictors of their own social support.
Conclusion
Social support in Chinese caregivers of patients with dementia needs to be improved, especially the subjective support and support utilization. Healthcare professionals should pay special attention to caregivers with a lower monthly household income and educational level and caregivers who lived in the suburban area.
... They represent an inherent and indispensable component of current health and social care provision across Europe, providing 80% of all long-term care [2]. Caring can be highly rewarding, but also demanding, resulting in social isolation, physical exhaustion, and psychological exhaustion, including anxiety, depression, frustration, anger, guilt, grief, stigma, and difficulties in reconciliation of work and care responsibilities [3][4][5]. Providing care for over 10 years and more than 40 hours per week is not a rare phenomenon, and it affects not only the carers' physical, emotional, social, spiritual, and financial wellbeing [6] but also the quality of the care provision itself [5]. A recent estimate of the outstanding role of informal care globally, based on the prevalence and incidence of noncommunicable diseases, has highlighted that for one care recipient, there are at least 3 carers [7]. ...
Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.
Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).
Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.
Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer’s wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.
Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.
... Caring for a person with dementia is a demanding job, resulting in difficulty for caregivers to maintain their physical, psychological, and social health. Previous research indicates that caregivers are a more vulnerable group than the general population with problems ranging from social isolation; feelings of anger, guilt, grief, depression, and physical exhaustion; and difficulties in the reconciliation of work and care responsibilities [2][3][4]. ...
BACKGROUND
During the last decade, more research has focused on web-based interventions delivered to support caregivers of people with dementia. However, little information is available in relation to internet use among caregivers in general, especially those caring for people with dementia.
OBJECTIVE
The aim of this study was to evaluate the dementia-related internet use and factors that may be associated with its use among caregivers of people with dementia in Greece.
METHODS
Secondary data from the Greek Dementia Survey of the Athens Association of Alzheimer’s Disease and Related Disorders were collected from April to June 2017. A total of 580 caregivers of people with dementia participated in the study.
RESULTS
The majority of the caregivers reported that they had used the internet in the previous 3 months (84.1%, 488/580). Nearly half of the caregivers (47.5%, 276/580) reported that they had received dementia services online. Bivariate analysis showed that a dementia-specific search of information was associated with age, education, kinship, and years of care. Age (odds ratio [OR] 2.362, 95% CI 1.05-5.33) and education (OR 2.228, 95% CI 1.01-4.94) were confirmed as predictors, with younger caregivers and those with higher educational attainment being more likely to search for dementia-specific information. Use of the internet to search for dementia information was only related to hours of care. The internet use by caregivers within the previous 3 months was associated with variables such as age, education, occupation, kinship, years of care, and self-reported impact on physical and social health.
CONCLUSIONS
Caregivers of people with dementia in Greece, as in the other southern European countries, are essential agents of the national health system. The existing short- and long-term respite care services are limited or nonexistent. Currently, caregivers receive mostly support and education from memory clinics and municipality consultation centers, which are mainly based in central cities in Greece. Despite the dementia awareness movement in Greece, there is still space to integrate the role of technology in the support and education of caregivers. Development of training programs for enhancing electronic health literacy skills as well as web-based services provision could support Greek caregivers in their everyday caring tasks.
... They represent an inherent and indispensable component of current health and social care provision across Europe, providing 80% of all long-term care [2]. Caring can be highly rewarding, but also demanding, resulting in social isolation, physical exhaustion, and psychological exhaustion, including anxiety, depression, frustration, anger, guilt, grief, stigma, and difficulties in reconciliation of work and care responsibilities [3][4][5]. Providing care for over 10 years and more than 40 hours per week is not a rare phenomenon, and it affects not only the carers' physical, emotional, social, spiritual, and financial wellbeing [6] but also the quality of the care provision itself [5]. A recent estimate of the outstanding role of informal care globally, based on the prevalence and incidence of noncommunicable diseases, has highlighted that for one care recipient, there are at least 3 carers [7]. ...
Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.
Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).
Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.
Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer’s wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.
Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.
... Caring for a person with dementia is a demanding job, resulting in difficulty for caregivers to maintain their physical, psychological, and social health. Previous research indicates that caregivers are a more vulnerable group than the general population with problems ranging from social isolation; feelings of anger, guilt, grief, depression, and physical exhaustion; and difficulties in the reconciliation of work and care responsibilities [2][3][4]. ...
Background:
During the last decade, more research has focused on web-based interventions delivered to support caregivers of people with dementia. However, little information is available in relation to internet use among caregivers in general, especially those caring for people with dementia.
Objective:
The aim of this study was to evaluate the dementia-related internet use and factors that may be associated with its use among caregivers of people with dementia in Greece.
Methods:
Secondary data from the Greek Dementia Survey of the Athens Association of Alzheimer's Disease and Related Disorders were collected from April to June 2017. A total of 580 caregivers of people with dementia participated in the study.
Results:
The majority of the caregivers reported that they had used the internet in the previous 3 months (84.1%, 488/580). Nearly half of the caregivers (47.5%, 276/580) reported that they had received dementia services online. Bivariate analysis showed that a dementia-specific search of information was associated with age, education, kinship, and years of care. Age (odds ratio [OR] 2.362, 95% CI 1.05-5.33) and education (OR 2.228, 95% CI 1.01-4.94) were confirmed as predictors, with younger caregivers and those with higher educational attainment being more likely to search for dementia-specific information. Use of the internet to search for dementia information was only related to hours of care. The internet use by caregivers within the previous 3 months was associated with variables such as age, education, occupation, kinship, years of care, and self-reported impact on physical and social health.
Conclusions:
Caregivers of people with dementia in Greece, as in the other southern European countries, are essential agents of the national health system. The existing short- and long-term respite care services are limited or nonexistent. Currently, caregivers receive mostly support and education from memory clinics and municipality consultation centers, which are mainly based in central cities in Greece. Despite the dementia awareness movement in Greece, there is still space to integrate the role of technology in the support and education of caregivers. Development of training programs for enhancing electronic health literacy skills as well as web-based services provision could support Greek caregivers in their everyday caring tasks.
... 26,28 Chronic diseases such as COPD should be managed in the context of the family, if possible, where help and support are available. 29 Previous studies have found that family members of a person with COPD perceive the caring relationship as a rewarding experience, 26,30 but in everyday life, it can become a burden 25,26,[31][32][33] due to family members' concern for their loved ones 26 and the constant fear of breathlessness, 28,34 acute exacerbations 28 and sudden death. 25 Family members may feel helpless in such life-threatening situations 28,34 because they are unprepared for them. ...
Objective:
The objective of this review was to identify and synthesize existing evidence on the experiences and expectations of self-management counseling of adult family members who are informal caregivers of a person with chronic obstructive pulmonary disease (COPD) in the context of inpatient or outpatient care.
Introduction:
Chronic obstructive pulmonary disease is the fourth leading cause of mortality and morbidity worldwide. It is a progressive, lifelong and unpredictable disease. As the disease progresses, both the people with COPD and their family members require information and practical skills to manage the disease. The role of family members is particularly important at an advanced stage of COPD. This systematic review examined family members' experiences and expectations of self-management counseling.
Inclusion criteria:
This review considered qualitative studies that investigated adult (older than18 years) family members' experiences or expectations of COPD self-management counseling in the context of inpatient or outpatient care. "Family member" refers to a person who is an informal caregiver because of his or her relationship to the person with COPD.
Methods:
A three-step search strategy was utilized in this review. The search strategy aimed to find published and unpublished studies in English and Finnish. The databases MEDLINE, CINAHL, PsycINFO, SCOPUS and Finnish medical bibliographic database (Medic) were searched. The search was conducted in December 2015 and updated in September 2018. Titles and abstracts were screened by two independent reviewers for the review's inclusion criteria. Eligible studies were then critically appraised by two independent reviewers for methodological quality. The findings and the illustrations of the findings were extracted and assigned a level of credibility. The qualitative research findings were pooled using the JBI method of meta-aggregation.
Results:
A total of 10 papers were selected for inclusion in this review. These studies were published from 2002 to 2017. The quality of all included studies was at least moderate. Each study had a total score between 7 and 10 on the JBI Critical Appraisal Checklist for Qualitative Research. The following four synthesized findings were aggregated from nine categories and 39 study findings: i) Family members' experiences with unresponsive behavior from health professionals, ii) Family members' experiences of unmet needs in self-management counseling, iii) Family members' information needs concerning COPD management and iv) Family members' information needs concerning coping strategies.
Conclusions:
The synthesized findings indicate that family members are frustrated by the shortcomings of self-management counseling. They also feel unprepared for and uncertain about their caring role. They need more information about COPD and coping strategies for COPD. Counseling is essential to high-quality care and should be offered to family members caring for a loved one at any stage of COPD.
... Furthermore, in the two studies that reported data on the level of care, the vast majority of caregivers provided less than 20 h of care per week (Winter et al., 2010;Al-Janabi et al., 2018). Given the unique challenges associated with dementia care and the finding that dementia caregivers, and spousal caregivers in particular, provide a higher level of care, have less leisure time, report greater withdrawal of support from family and friends and less affectionate social support, more interrupted sleep, and more depressive symptoms than caregivers of people without dementia (Nordtug et al., 2013;Moon and Dilworth-Anderson, 2015), it is likely that the prevalence of caregiver choice is lower among this population. However, to our knowledge, no previous studies have reported on the prevalence of choice among dementia caregivers specifically, and little is known about the nature of the relationship between dementia caregiver choice and caregiver health and wellbeing outcomes. ...
Background
The perception of choice in becoming a caregiver may impact on caregiver psychological and physical health. We determined the proportion of spousal dementia caregivers who felt they had a choice, and examined whether lack of choice in taking up the caregiving role and the perceived degree of choice in caregiving predicted caregiver health and wellbeing and care-recipient placement in long-term care at 1-year follow-up.
Methods
We performed secondary analyses of data from DeStress, a longitudinal study of 251 spousal dementia caregivers in Ireland. We used multivariate logistic and linear regression analyses to examine whether lack of choice (a dichotomous item) and/or the perceived degree of choice (a 9-point scale) at baseline predicted caregiver health (number of chronic health conditions; self-reported health) and wellbeing (e.g., burden, anxiety, depression, stress, and positive aspects of caregiving) and care status (continued care at home or placement in long-term care) at follow-up.
Results
The vast majority of caregivers (82%) reported that they had no choice in taking up the caregiving role. Nevertheless, nearly three-quarters (74%) responded above the midpoint on the rating scale (Mean = 6.82, SD = 3.22; Median = 9; Mode = 9), indicating they provided care voluntarily. Caregivers who reported a greater degree of choice were more likely to still be providing care at home at follow-up and to identify benefits from providing care. Neither choice nor degree of choice predicted any other caregiver outcomes.
Conclusion
For the vast majority of spousal dementia caregivers, taking up the caregiving role is not perceived as a choice; yet, most report performing this role voluntarily. Thus, facilitating greater choice may not necessarily diminish the key contribution family caregivers make to the care system. Although we found no evidence that caregiver choice predicted more positive caregiver health and wellbeing, the perception of choice is important in and of itself, and may benefit caregivers by facilitating the identification of positive aspects of care and be a factor in delaying care-recipient placement in long-term care. Future research should be especially mindful of how caregiver choice is assessed and how this may affect the resulting prevalence of choice.
... This extended support mostly included adult children living in the home or nearby, who were caring alongside the spouse [12]. However, perceived extended support was negatively associated with the patient's disease severity [27]. Informal caregivers who perceive less support from family and friends are more likely to experience loneliness and depression [28]. ...
The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status.
... Informal caregivers are generally people with close relationships to the person with dementia without formal training and without formal remuneration, which means that providing informal care for someone with dementia can come at a substantial cost for the caregiver: apart from financial and time burden (Dunn & Strain, 2001;Schulz & Martire, 2004), informal dementia caregivers experience mental health problems to a greater degree than both the general population (Pinquart & S€ orensen, 2003) and caregivers of people with other chronic diseases (Nordtug, Krokstad, Sletvold, & Holen, 2013;Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999). In particular, the high prevalence and high likelihood of developing depression and anxiety in informal dementia caregivers is a cause of concern (Joling et al., 2010;Russo, Vitaliano, Brewer, Katon, & Becker, 1995). ...
Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect.
A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study.
Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving.
Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving.
© 2015 The International Association of Applied Psychology.
... This has been seen in heart disease, mental illness, and cancer, and COPD. [49][50][51] Such studies consistently highlight that the overwhelming number of caregivers are older women. Unfortunately, these studies also detail a troubling trend -caregivers frequently suffer from stress, depression, anxiety, decreased quality of life, and decreased self-efficacy. ...
Asthma is one of the most common chronic conditions in the United States, and prevalence is currently at historically high levels. The most recent figures from the Centers for Disease Control and Prevention (CDC) reveal that approximately 13% of adults have ever been told they have asthma, and 8% still have asthma.1 Asthma is marked by significant health disparities, with certain population subgroups exhibiting increased prevalence and worse health outcomes. One such group is older asthmatic women, in whom the highest asthma mortality rate is seen.
While the prevalence of asthma in the elderly is no different than the general population, the morbidity and mortality figures are strikingly worse. For example, the death rate among those above 65 is by far the highest, nearly four times higher than the overall average.2 Moreover, physician office visits per 100 persons with asthma are highest in those over 65.3 Although the rate of emergency department visits is no higher than other age groups, hospitalizations are again disproportionately higher among older adults (Figure 1). This suggests that older adults with asthma who visit the emergency room are more likely to require hospitalization, and are more likely to have a fatal asthma event, than other age groups.
Figure 1
Asthma hospitalization rates by detailed age group: United States, average annual rate 2007 – 2009. Data presented as mean +/− SE mean. Vital Health Stat 3(35). 2012.
Gender discrepancies in asthma prevalence and outcomes are evident. Among all adults, women are significantly more likely to report asthma than men (9.9 vs. 6.2%). In those over 65, 9.1% of older women and 5.7% of older men noted current asthma in 2011.4 Among the elderly, it is women who suffer most from asthma. From 2007 – 2009, the asthma mortality rate was by far the highest in women over age 65, and this rate was 30% higher than men over age 65.2 The asthma death rate among older women is approximately four times higher than the overall total. Women over age 65 are also nearly twice as likely as men over age 65 to visit the emergency department for asthma. When considering asthma hospitalization rates by age and gender, older women had the highest rate of any sub-group.3 Therefore, understanding and improving asthma outcomes for older women is desperately needed in order to decrease health care costs, improve outcomes, and reduce health disparities.
Until recently, little research has focused on the unique asthma challenges of women or the elderly. The purpose of this paper is to examine factors that may contribute to the unequal burden of asthma among older women, and to present practical solutions to improve care in this population.
Background:
Caregiver distress is the strain experienced by individuals providing care for people with chronic conditions which limit their self-sufficiency for tasks of daily living. Over 1 in 5 Americans are caregivers-a number expected to increase with an aging population.
Methods:
We performed a cross-sectional analysis using the 2021 Behavioral Risk Factor Surveillance System (BRFSS) conducted by the Centers for Disease Control and Prevention (CDC) to determine rates of depressive disorders among caregivers and associations between demographic and relational aspects of the care recipient.
Results:
The included sample size for analysis was 32,676, representing 17,274,935 US caregivers. We found that caregivers who were female, American Indian/Alaskan Native, race-not-listed, earning less than $15,000 a year, or did not complete high school, had higher rates of depression diagnosis. The rates of depression were higher among caregivers if the recipient had a mental or chronic respiratory condition, or if the recipient was their live-in partner. Rates of depression were lower for caregivers of their mother-in-law or spouse.
Limitations:
Results were based on self-reported survey data, which are susceptible to social desirability bias. Diagnoses of depression may also be over or under reported across several demographic variables, which may confound results.
Conclusion:
Our findings add to previous research showing that specific groups of caregivers are at higher risk for caregiver stress. Future qualitative research may elucidate underlying causes of depression among caregivers. Analysis into the risk factors for depression among caregivers is vital in providing effective therapeutic options for the caregiver.
Background
Informal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed.
Objective
This study’s aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app—the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts.
Methods
A stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist.
Results
Between August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study.
Conclusions
The Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders.
Trial Registration
Australian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf
International Registered Report Identifier (IRRID)
RR1-10.2196/33023
Samhandling – avhengig av et mangfold av faktorer Innledning Helsefremmende arbeid handler om å løfte fram ressurser, muligheter og ønsker hos dem vi skal bistå. Bedre samhandling mellom ressurspersoner i det offentlige tjenesteapparatet skal sørge for at helse-fremmende tiltak blir sterkere ivaretatt i møte med den enkelte. Når alle som er involvert i arbeidet over-for en tjenestemottaker samhandler godt, vil det i seg selv virke positivt på helsen framfor at tjenestene opptrer fragmentert og uten sammenheng med hverandre. Dette kapitlet bygger på en kvalitativ studie med fokus på tjenesteyting til barn og unge med sammensatte behov (Bulling 2011). De har ofte behov for bistand fra mange instanser, og hjelpen de får vil vaere helt avgjørende for utviklingsmuligheter og helsetilstand både i oppvekst og voksen alder. i stuDien ble 43 kommunalt ansatte som arbeidet med barn og unge i ulike deler av tjenesteapparatet; skole, barnehage, helse, fritidstilbud, barnevern og PPT intervjuet i grupper. Føringer i stortingsmeldinger og utredninger de siste årene peker på behovet for helhetlige og samordnede tjenester som er best mulig tilrettelagt for det enkelte barnet eller ungdommen. Kapitlet tar for seg to forhold som har betydning for samhandling fra tjenesteyternes perspektiv; rammefak-torer som grunnlag for samhandling, og at ansatte har kjennskap til hverandre. Dette danner grunnlag for anbefalinger i forhold til praksis mot slutten av ka-pitlet. Det å etablere god samhandling i kommunale tjenester for barn og unge krever bevisste utviklingsprosesser der rammefaktorer og kjennskap til hverandre er grunnleggende for å kunne lykkes.
Stortingsmeldinger og utredninger viser et tydelig behov for endring i helsetjenesten og hjelperrollen i tiden som kommer. I Stortingsmelding nr 47 " Samhandlingsreformen " (HOD 2009) skisseres en klar dreining fra fokus på behandling og reparasjon, til fokus på helsefremming. Samtidig skal flere mennesker få hjelp der de bor (ibid). Dette medfører et større trykk på de kommunale helsetjenestene, og spesielt de hjemmebaserte omsorgstjenestene. Det forventes å bli faerre sykepleiere, vernepleiere og andre helse-arbeidere fremover. Samtidig blir befolkningen eldre, og sannsynligvis vil det øke behovet for helse-og omsorgstjenester. Det fordrer mer samhandling på alle nivå, også mellom helsepersonell, som sykepleiere og vernepleiere, og pasientens nettverk. Den nye folkehelseloven av 2011 påpeker at grunnlaget for god helse først og fremst ligger utenfor helsetjenesten (HOD 2011a). Stortingsmelding nr. 13 " Utdanning for velferd, samspill i praksis " , påpeker sterkt nødvendigheten av at nyutdannet helsepersonell i årene fremover øker sin samhandlingskompetanse (KD 2012). Denne boka har spesielt fokus på hvordan sykepleiere og vernepleiere kan jobbe helsefremmende gjennom to virkemidler; sosial støtte og samhandling. Med forskningsbaserte og praksisnaere eksempler vil boka bidra med aktuell og nyttig kunnskap for utvikling av en helsetjeneste i tråd med samhandlingsreformen.
Sykehjem er en del av den kommunale helsetjenesten som tilbyr behandling til kommunens innbyggere.
De siste 10-20 årene har sykehjemmene vært i en utvikling hvor de har fått ansvar for stadig nye
pasientgrupper. Behandlingstilbud som for få år tilbake naturlig hørte hjemme i sykehus er overført til
kommunehelsetjenesten. Dette gjelder for eksempel respiratorbehandling, palliativ behandling, behandling
av pasienter med kroniske psykiske lidelser og personer med rusproblemer. I framtida vil kommunene
trolig få ansvar for enda flere pasientgrupper, da flere vil overleve premature fødsler, alvorlig sykdom eller
ulykker. Siden sykehusene fortsatt vil redusere antall sengeplasser, korte ned på liggetiden og overføre
nye pasientgrupper til dagbehandling, vil mange utfordringer bli overført fra spesialisthelsetjenesten til
kommunene. Kommunehelsetjenesten vil få ansvar for å tilby behandling av pasienter
både før, i stedet for og etter sykehusinnlegging.
REVIEW QUESTION/OBJECTIVE
The objective of this systematic review is to identify and synthesize existing evidence of the experiences and expectations of self-management counseling of adult family members (e.g. spouse, adult child) who are informal caregivers of a person with chronic obstructive pulmonary disease.
The specific research questions are:
What are the experiences of adult family members in self-management counseling of chronic obstructive pulmonary disease?
What are the expectations of adult family members in self-management counseling of chronic obstructive pulmonary disease?
INCLUSION CRITERIA
Types of participants
This systematic review will consider studies that include adults (over 18 years) who are family members of individuals with any stage of chronic obstructive pulmonary disease. The concept of family member refers to a person who is an informal caregiver because of a mutual relationship with the person with chronic obstructive pulmonary disease. Furthermore, studies are included if family members have participated in self-management counseling organized by healthcare professionals or have wished or planned to participate. All types of counseling methods are included.
Types of phenomena of interest
This systematic review will consider studies that investigate family members’ experiences and expectations of chronic obstructive pulmonary disease’s self-management counseling.
Context
This systematic review will consider studies that investigate family members’ experiences and expectations of chronic obstructive pulmonary disease’s self-management counseling in the context of inpatients or outpatients care.
Family caregivers already have a paramount role in daily care for patients with chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), or chronic renal failure (CRF). To date, it remains unknown whether and to what extent the experience of caregiving changes over time.
To examine changes in caregiver burden and positive aspects of caregiving during 1-year follow-up in patients with advanced COPD, CHF or CRF and to study determinants of changes in caregiver burden and positive aspects of caregiving.
In this longitudinal observational study, patients and their family caregivers who had complete data at baseline and 12 months (n = 104) and family caregivers of patients who died during 1-year follow-up (n = 15) were included. Caregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC). Domain scores were classified into three categories, and baseline characteristics were compared between these categories.
A majority of the individuals showed 1-year changes in FACQ-PC domain scores. These individual changes were not explained by demographic or clinical patient characteristics at baseline or changes in patient characteristics during 1-year follow-up. Furthermore, caregiver burden was higher for caregivers of patients who died during 1-year follow-up compared to caregivers whose relative completed 1-year follow-up.
This study showed that caregiver burden and positive aspects of caregiving can change over time, and these changes are highly individual. Therefore, healthcare providers should regularly pay attention to family caregivers, regardless the patients' characteristics.
© 2015 Nordic College of Caring Science.
Objectives:
This study explores the association between coping, measured by the extent of locus of control, and the burden of care on family carers of persons with dementia (PWD).
Method:
Two hundred thirty PWD living at home and their family carers were recruited from 20 Norwegian municipalities. The carers' burden was assessed by the Relatives' Stress Scale (RSS) and coping by the Locus of Control Behaviour Scale. The PWD were assessed by the Neuropsychiatric Inventory (NPI-Q), the Physical Self-Maintenance Scale (PSMS), the Instrumental Activities of Daily Living (IADL) scale, and the Mini Mental Status Examination (MMSE).
Results:
Locus of control (LoC) was found to be the most important factor associated with the burden on carers of PWD, even when we had controlled for the PWD variables, such as the NPI-Q score. The LoC and the carer's use of hours per day to assist the PWD were the only two variables the carers found that affected the extent of the burden. The NPI-Q was the most important variable in the PWD that affected the burden on the carers.
Conclusion:
Carers who believe that what happens to them is the consequence of their own actions are likely to be less burdened than carers not expecting to have control. This finding gives a possibility to identify carers with a high risk of burden.
This study examines the role of formal and informal caregiving help and social support as stress buffers for 54 spouse caregivers to dementia patients. The majority received no caregiving help from informal sources, while half the sample employed a paid caregiver. There were no direct or buffering effects of informal help. Paid help buffered the relationship between caregiving stress and caregiver burden. Perceived availability of social support buffered the relationship between caregiving stress and depression. These findings suggest that both formal and informal supports are important for the psychological well-being of spouse caregivers, and that they may affect different aspects of well-being.
Background & Aims : Stroke and aphasia can have a profound impact on people's social activities, and family and social relationships. This study looked at patterns of social support in people with chronic aphasia following stroke. It examined the relationship between social support and quality of life, exploring which aspects of social support (social network versus perceived social support) were most associated with health-related quality of life (HRQL). Methods & Procedures : A cross-sectional interview-based survey study was conducted. A cluster-sampling framework was used to recruit participants with chronic aphasia following stroke (> 1 year) from three different sites in the south-east of England. Measures included the Stroke and Aphasia Quality of Life Scale-39 item version (SAQOL-39), the MOS Social Support Survey (SSS), and a social network questionnaire. Descriptive statistics, correlation, t -tests, and ANOVAs were used as appropriate. Outcomes & Results : The results of those able to self-report (83 out of 95 participants, 87%) are reported here. In terms of social networks, the mode of the size of network was 4. Size of network was associated with HRQL for women only. Most participants (71%) reported they had the same amount of contact with their children following the stroke, while 64% reported they saw their friends less. Those who had the same level of contact with their family as before the stroke had the highest HRQL scores; those who saw them either less or more than before the stroke had lower HRQL. In terms of perceived social support, the SSS scores were negatively skewed with a mean (SD) of 3.69 (.95), suggesting that participants felt overall well supported. Two types of support were significantly correlated with HRQL: social companionship and informational support. Clinical implications : Therapy services for people with aphasia could consider ways to enhance social companionship and informational support as this may positively impact on HRQL. Implications could include complementing and supporting existing social networks, and facilitating access to information and social participation.
Provides a systematic overview of the health and family literature related to stress and coping in marriages affected by chronic illness such as chronic obstructive pulmonary disease (COPD). Numerous interactions between the biopsychosocial stressors and functioning (including coping strategies and patterns) within and between marital partners dealing with dyspnea and the psychosocial consequences of COPD are described. The review encompasses the reciprocal influences between marriage and chronic illness. A case is made for assessing and addressing health needs using a systems perspective that takes into account the realities of both marital partners as they manage their lives together. Implications for approaching multidisciplinary health care in the interpersonal context of marriage are suggested. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Aim. The aim of the study was to identify the social support networks of older people living in the community in Ireland using Wenger’s (1994) network typology.
Background. The population of older people in the community is increasing. With increasing age and changes in family circumstances a substantial proportion of older people will require social, psychological and instrumental support. However a lack of adequate social support networks for vulnerable older people can result in poor health, loneliness and isolation.
Method. A national, cross‐sectional telephone survey of 683 people aged between 65 and 99 years was undertaken using the Practitioner Assessment of Network Type as the basis for identifying social support networks.
Results. The results demonstrated that the majority of older people were living in stable and supportive social networks and reported high levels of contact with family, friends and neighbours. However, a significant minority of older people were living in vulnerable networks. Older people in these networks are susceptible to loneliness, isolation and poor emotional and physical health.
Conclusion. Through the identification of people in vulnerable networks, nurses working both in the hospital and community setting can ensure that formal support is aimed at providing care to older people who do not have access to informal care networks. Furthermore, the predictive utility of the Practitioner Assessment Network Type (PANT) can enable nurses to identify people at risk of poor social support.
It has long been recognised that the majority of care provided in chronic illness comes not from health and social care professionals, but from family and friends. One such illness is chronic obstructive pulmonary disease (COPD), a leading cause of morbidity and mortality in the developed world.To explore the specific care needs of informal caregivers of patients with advanced COPD, interviews were conducted with seven active family caregivers. Interviews were taped, transcribed and content analysed to obtain the caregivers' needs. Results confirm that family caregivers provide direct care with little support and assistance. Participants reported restricted activities of daily living and some emotional distress. There were knowledge deficiencies among caregivers relating to the COPD illness trajectory and little awareness of the potential of palliative care. Family caregivers need social and professional support while caring for a patient at home. This would help to ensure that their physical and emotional health does not suffer. There is a need to devise interventions to ensure family caregivers are supported.
The aim of the present study is to increase knowledge regarding associations between couples' health condition and psychological distress in both spouses considering gender as well as patient/spouse status.
We examined a community-based sample of 995 elderly couples in which either both spouses were healthy, one of them suffered from chronic disease or both spouses were ill. Both spouses filled out the Hospital Anxiety and Depression Scale.
In line with our hypotheses, the results showed an association between women's psychological distress and their own as well as their spouse's health condition, whereas men's psychological distress was associated only with their own health condition.
The findings demonstrate the need for awareness of gender and patient/spouse differences in psychological distress among elderly couples confronted with chronic disease.
This study assessed the information provided in a memory clinic and the patient and caregiver factors that influenced the provision of information. The study was part of a larger cross-sectional study of the diagnosis of dementia and satisfaction with information given. The participants were 51 elderly patients suspected of having dementia and living at home together with their caregivers. The main outcome measures were the checklist of information communicated to the patients and caregivers, patients' behavioural problems, patients' instrumental activities of daily living (IADL) problems, and caregivers' sense of competence. The results indicate that basic information about the diagnosis was given to 86% of patients and 88% of caregivers. Specific information about patients' behaviour and professional care was more often given when patients had more cognitive, behavioural, or IADL problems and caregivers had a lower sense of competence. Providing the majority of patients with information is feasible. These results contribute to an explanation of previous findings indicating that caregivers of patients with cognitive problems not related to dementia were less satisfied with the information they received. Adequate information should not only include issues considered relevant by clinicians but should also be tailored to the information needs of patients and caregivers.
Providing care for a frail older adult has been described as a stressful experience that may erode psychological well-being and physical health of caregivers. In this meta-analysis, the authors integrated findings from 84 articles on differences between caregivers and noncaregivers in perceived stress, depression, general subjective well-being, physical health, and self-efficacy. The largest differences were found with regard to depression (g = .58), stress (g = .55), self-efficacy (g = .54), and general subjective well-being (g = -.40). Differences in the levels of physical health in favor of noncaregivers were statistically significant, but small (g = .18). However, larger differences were found between dementia caregivers and noncaregivers than between heterogeneous samples of caregivers and noncaregivers. Differences were also influenced by the quality of the study, relationship of caregiver to the care recipient, gender, and mean age of caregivers.
To develop a typography of the characteristics of caregivers of community dwelling people with dementia or memory loss who do not use services and empirically investigate the reasons for service non-use.
The findings of a literature review were used to develop a typography of caregivers' non-use of services. This typography was applied to a sample of community-based caregivers.
One in three caregivers were using no services and one in four only one service. Despite considerable proportions reporting low levels of life satisfaction and high levels of overload and resentment the main reasons caregivers gave for not using services were that they did not consider they needed the services. Other reasons for service non-use included care recipient reluctance to use services, lack of knowledge of services or being in the process of applying for services. Service availability or affordability were not identified as major impediments to service use. Presence of a physical disability and contact with a social worker were associated with service use.
Caregivers of people with dementia incur significant strain and have substantial need for a variety of services. Nevertheless many caregivers were not using support services, mainly because of perceived lack of need or lack of awareness. Better public promotion of services, destigmatising dementia and encouraging referrals from health professionals could help overcome the barriers to service use.
The present study revealed that older adults recruit cognitive control processes to strengthen positive and diminish negative information in memory. In Experiment 1, older adults engaged in more elaborative processing when retrieving positive memories than they did when retrieving negative memories. In Experiment 2, older adults who did well on tasks involving cognitive control were more likely than those doing poorly to favor positive pictures in memory. In Experiment 3, older adults who were distracted during memory encoding no longer favored positive over negative pictures in their later recall, revealing that older adults use cognitive resources to implement emotional goals during encoding. In contrast, younger adults showed no signs of using cognitive control to make their memories more positive, indicating that, for them, emotion regulation goals are not chronically activated.
There is increasing research exploring depression in carers of people with dementia. This study explored the relation of entrapment, shame and guilt to depression in a group of 70 carers of those with dementia. As in other studies the experience of entrapment in the role was highly related to depression. Moreover, experiences of shame relating to self-criticism, other people's expectations and the fear of their criticism were significantly related to depression, entrapment and guilt. Guilt however, as focused on the fears of harming others, letting others down and sense of responsibility, was not associated with depression or entrapment. Depression in carers may relate in part to feeling trapped in a role but also being vulnerable to criticism and feelings of inadequacy in that role. In this study, degree of behavioural disturbance/dependence was not found to be significantly associated with any of the research variables.
Those who provide care at home for a spouse with Alzheimer's disease (AD) endure considerable challenges, including social isolation and increasing caregiving responsibilities. We examine the extent to which an intervention that helps spouse-caregivers mobilize their social support network, helps them better adapt to the caregiving role. We used detailed social support information collected from 200 spouse-caregivers participating in a randomized, controlled trial of enhanced social support services in the USA. Using random effects regression models, we found that individuals in the intervention group reported higher levels of satisfaction with their social support network over the first 5 years of the intervention than those in the support group. Higher levels of emotional support, more visits, and having more network members to whom they felt close were all individually predictive of longitudinal changes in social support network satisfaction. We conclude with a discussion of the importance of having psychological respite when caregivers spend their days in the home and are isolated.
Objective: The aim of the present study is to increase knowledge regarding associations between couples' health condition and psychological distress in both spouses considering gender as well as patient/spouse status. Method: We examined a community-based sample of 995 elderly couples in which either both spouses were healthy, one of them suffered from chronic disease or both spouses were ill. Both spouses filled out the Hospital Anxiety and Depression Scale. Results: In line with our hypotheses, the results showed an association between women's psychological distress and their own as well as their spouse's health condition, whereas men's psychological distress was associated only with their own health condition. Conclusion: The findings demonstrate the need for awareness of gender and patient/spouse differences in psychological distress among elderly couples confronted with chronic disease.
Social resourcefulness refers to the behaviors, covert and overt, which an individual uses to establish and maintain supportive relationships. This study examines how social resourcefulness relates to social support and wellbeing in persons under the chronic stress of caring for a family member with dementia. Social resourcefulness is significantly associated with social support and with caregiver wellbeing (caregiver depression, caregiver quality of life, perceived benefits from caregiving, and perceived health status). Regression analyses revealed that social resourcefulness remained significantly related to caregiver outcomes after controlling for several covariates (care-recipient's memory and behavior problems, caregiver age, and caregiver health status). Results support the role of social competence in creating helpful social relationships and extend previous research by identifying specific help-seeking and help-maintaining behaviors associated with support and wellbeing in a high-risk population.
This article reviews some of the issues and themes in the literature on caregiving in dementia and marriage, which form the basis of a doctoral dissertation being carried out by the author. The study is utilizing both standardized scales and in-depth interviews to investigate the impact of dementia on marital relationships, in particular the influence on morale of caregiving spouses, of marital intimacy, marital satisfaction, social support from spouse and the experience of pleasant events. The article will refer to some of the qualitative information emerging from the interviews. In the past 30 years the caregiving literature in the fields of psychology, psychiatry and gerontology has focused primarily on the negative consequences of caregiving, such as strain and burden. Although the nature of the relationship between caregiver and care recipient is considered to be a relevant factor, the nature of the marital relationship has received relatively little attention. The impact on aspects of the marital relationship, such as reduced shared activities, loss of emotional support from spouse and a diminution in the quality of verbal communication between the couple may have negative consequences for the morale of caregiving spouses and their perception of changes in marital intimacy and marital satisfaction. When considering caregiving in the future, changing attitudes towards marriage, and intimate relationships in general, need to be taken into account.
Objectives.
—To determine (1) the number and proportion of Americans living with chronic conditions, and (2) the magnitude of their costs, including direct costs (annual personal health expenditures) and indirect costs to society (lost productivity due to chronic conditions and premature death).
Design.
—Analysis of the 1987 National Medical Expenditure Survey for prevalence and direct health care costs; indirect costs based on the 1990 National Health Interview Survey and Vital Statistics of the United States.
Setting.
—US population.
Participants.
—For the estimate of prevalence and direct costs, the National Medical Expenditure Survey sample of persons who reported health conditions associated with (1) use of health services or supplies or (2) periods of disability.
Interventions.
—None.
Main Outcome Measures.
—The number of persons with chronic conditions, their annual direct health care costs, and indirect costs from lost productivity and premature deaths.
Results.
—In 1987, 90 million Americans were living with chronic conditions, 39 million of whom were living with more than 1 chronic condition. Over 45% of non-institutionalized Americans have 1 or more chronic conditions and their direct health care costs account for three fourths of US health care expenditures. Total costs projected to 1990 for people with chronic conditions amounted to $659 billion—$425 billion for direct health care costs and $234 billion in indirect costs.
Conclusions.
—The prevalence and costs of chronic conditions as a whole have rarely been estimated. Because the number of persons with limitations due to chronic conditions is more regularly reported in the literature, the total prevalence of chronic conditions has perhaps been minimized. The majority of persons with chronic conditions are not disabled, nor are they elderly. Chronic conditions affect all ages. Because persons with chronic conditions have greater health needs at any age, their costs are disproportionately high.
A study designed to explore the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their carers, particularly with regard to ongoing and palliative care needs.
The participants were nine men and one woman with severe COPD and the carers of eight of the men, in East Devon, UK. Semi-structured interviews were undertaken, transcribed and analysed using interpretative phenomenological analysis (IPA).
The emergent themes were of losses, adaptation, relationships with health professionals and effect on carer. Losses reflected the loss of personal liberty and dignity and of previous expectations of the future. Adaptation included strategies to cope with the effects of the disease. Relationships related to both positive and negative aspects of contact with health professionals. There was appreciation for continuity of care and reassurance. The effect on the carer was evident particularly as they had to take on multiple roles. They also experienced some of the same losses as the patient and appeared enmeshed with the illness.
This study confirmed the inexorable decline in activities of daily life and social isolation for patients with severe COPD. Adaptive strategies were common and some positive aspects were identified. Support from the primary health care team was appreciated. The strain on carers was very apparent. The concept of a more structured sharing of information and a surveillance role mediated by health care professionals known to the patient and carer would be a pragmatic approach to improving care.
Most studies concerning older people's health and well-being have focused on their ill health, disease and complaints and have mainly been conducted with a quantitative design. Hence, there is still a need for qualitative studies in which these peoples' own views on health and well-being are shown, especially when they are dependent on health care in a community setting. A qualitative approach was used in the study reported here and aimed at obtaining a deeper understanding of older peoples' own views about their health and well-being. Interviews were carried out on two occasions with 19 older people living in their own homes and in sheltered accommodation. The data were analysed using content analysis. The findings suggested that the possibility to feel healthy was dependent both on the older person's own ability to adjust or compensate to their situation, and on how their caregivers, relatives and friends could compensate for the obstacles the older person faced. The subcategories that captured the informants' experiences of health and ill health were described as positive and negative poles of autonomy, togetherness, tranquillity and security in daily life. The significance of the caregivers was clearly evident. Their competence, commitment and treatment were prerequisites for the older person's ability to experience health in spite of being dependent on care.
"Must be judged as a landmark in medical sociology."âNorman Denzin, Journal of Health and Social Behavior "Profession of Medicine is a challenging monograph; the ideas presented are stimulating and thought provoking. . . . Given the expanding domain of what illness is and the contentions of physicians about their rights as professionals, Freidson wonders aloud whether expertise is becoming a mask for privilege and power. . . . Profession of Medicine is a landmark in the sociological analysis of the professions in modern society."âRon Miller, Sociological Quarterly "This is the first book that I know of to go to the root of the matter by laying open to view the fundamental nature of the professional claim, and the structure of professional institutions."âEverett C. Hughes, Science
This thoroughly revised and updated edition offers a comprehensive guide to measures of health and is an essential reference resource for all health professionals and students. Containing details of the use of most of the major measures of health and functioning, the new edition includes: a new chapter on measuring global quality of life; updated analysis of measures of subjective well-being; and a revised and up-to-date selection of useful addresses.
Measuring Health is key reading for upper level undergraduates and postgraduates in health studies, health sciences, research methods and social sciences.
The literature clearly denotes that spouses differ from other family members in their reactions to caregiving, their patterns of service use and their assessment of specific services. Yet, despite their prevalence as caregivers, little is known about their unique perceptions of community services and the factors that impact their experiences with the service system. The purpose of this study was to explore the relative influence of (a) spouses' personal factors (e.g., gender, family support) and (b) service factors (e.g., one-on-one professional support), on spousal caregivers' perceptions of community services. The study employed a survey design with a sample of 73 spousal caregivers caring for their partners with dementia at home. This study found that spousal caregivers have more negative perceptions of the service system when their in-home workers are not informed about their spouses' likes, dislikes and routines. This service factor was the most significant predictor of caregivers' service perceptions. The study further found that most spousal caregivers receive fewer than five consultations from a non-medical professional over a one year period. While spouses longed for more professional support, this service factor was not uniquely associated with service related stress. The policy and practice implications of these findings are discussed.
The objectives of this narrative review were to identify: (1) The information and support needs of carers of family members with chronic obstructive pulmonary disease; (2) appropriate interventions to support carers in their caregiving role; (3) information on carers' needs as reported in studies of patients living with COPD in the community.
Chronic obstructive pulmonary disease is a major health problem in the UK resulting in significant burden for patients, families and the health service. Current National Health Service policies emphasise, where medically appropriate, early discharge for acute exacerbations, hospital-at-home care and other models of community care to prevent or reduce re-hospitalisations of people with chronic conditions. Understanding carers' needs is important if health care professionals are to support carers in their caregiving role.
A narrative literature review.
Thirty five papers were reviewed after searching electronic databases.
Few studies were identified which addressed, even peripherally, carers' needs for information and support, and no studies were found which described and evaluated interventions designed to enhance caregiving capacity. Several studies of hospital-at-home/early discharge, self care and home management programmes were identified which included some information on patients' living arrangements or marital status. However, there was little or no detail reported on the needs of, and in many cases, even the presence of a family carer.
This review highlights the dearth of information on the needs of carers of chronic obstructive pulmonary disease patients and the need for future research.
There is little research based knowledge of the needs of carers of chronic obstructive pulmonary disease patients and interventions to assist them in providing care. This knowledge is critical to ensure that carers receive the information they need to carry out this role while maintaining their own physical and emotional health.
To examine the provision of support to patients with frontotemporal dementia (FTD) and their family carers compared with patients with early onset Alzheimer's dementia (AD) and their carers, and the carers' satisfaction with the support.
Data came from 60 dyads of patients with dementia and their principal family carers, 23 subjects with frontotemporal dementia and their 23 carers, and 37 subjects with early onset Alzheimer's disease and their 37 carers.
Patients with a frontotemporal dementia diagnosis were significantly more frequently offered stays in nursing homes (p = 0.04). Carers of patients with frontotemporal dementia were significantly less satisfied with the provision of information about the disease compared with carers of early onset Alzheimer's disease patients (p = 0.05) and were significantly less satisfied with counseling and follow-up advice (p = 0.05).
Changes of personality in patients with frontotemporal dementia may be the major reason why they were offered more stays in institutions. These family carers tend to be less satisfied with the provision of support they received from the specialist health service compared to carers of Alzheimer's disease patients, and are in need of more, and other forms of support.
Occupational therapists treating older people with Alzheimer disease know that they must also consider the others who are affected by the disease, the informal caregivers. Intervention is most effective when it enables both the impaired person and the primary caregiver to manage the secondary symptoms of dementia. Unfortunately, little is understood about how caregivers approach and carry out their tasks and about why male and female caregivers respond differently to their caregiving role in terms of depression, burden, stress, and substance abuse.
This paper discusses the effects of gender on dementia management plans of spousal caregivers. Husbands and wives have different approaches to caregiving; each approach has consequences. Male caregivers adopt a task-oriented approach to their duties and carry out their activities in a linear fashion; female caregivers use a parent–child approach and nest activities inside one another in a constant stream of work. Two cases are presented to illustrate gender differences in dementia management plans. Implications for occupational therapy include suggestions for supporting men and women in their caregiving role, modulating the negative consequences of caregiving, and conducting research to demonstrate the efficacy of an occupational therapy approach.
This paper describes the development and evaluation of a brief, multidimensional, self-administered, social support survey that was developed for patients in the Medical Outcomes Study (MOS), a two-year study of patients with chronic conditions. This survey was designed to be comprehensive in terms of recent thinking about the various dimensions of social support. In addition, it was designed to be distinct from other related measures. We present a summary of the major conceptual issues considered when choosing items for the social support battery, describe the items, and present findings based on data from 2987 patients (ages 18 and older). Multitrait scaling analyses supported the dimensionality of four functional support scales (emotional/informational, tangible, affectionate, and positive social interaction) and the construction of an overall functional social support index. These support measures are distinct from structural measures of social support and from related health measures. They are reliable (all Alphas greater than 0.91), and are fairly stable over time. Selected construct validity hypotheses were supported.
The Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM-III) published by the American Psychiatric Association in 1980, and now translated in many languages, has raised a great interest in the whole world. It has probably had on psychiatric thinking as important an impact as the Treatise of Psychiatry of E. Kraepelin at the beginning of the century. The evolution of psychiatric nosology and the circumstances of the birth of DSM-III are described. In discussing the general principles and the technical aspects, the influence of several currents of thought are emphasized: recent remedicalization of psychiatry in the United States, suspicion about speculative theories, return to an a-theoretical clinical descriptive nosology, influence of quantitative differential psychology and of the models provided by computer diagnosis. The nature of the two basic principles: the necessity of attaining a proven high interjudge reliability in diagnosis, and the descriptive a-theoretical nature of the description of each category is analyzed. From those principles derive the most original features of the DSM-III: the use of stringent diagnostic criteria, of a possible quantitative nature and the adoption of a multi-axial system. Some of the most striking changes introduced are the logical consequences of the principles e.g. the deletion of the term "neurosis". Others changes such as the introduction of new diagnostic categories or changes in the limits of classical ones (especially schizophrenia and manic-depressive psychosis) reflect a reaction against previous trends of American psychiatry and a strict adherence to a pragmatic and empirical thinking. In addition, the flexibility of its structure allows for the incorporation of new empirical results. In spite of many criticisms, either against the general orientation or against specific positions, some of which are presented in the course of this article, it is concluded that the success of the DSM-III results from a trend in psychiatric thinking not confined to the United States. Its controversial nature has stimulated the reappraisal of old concepts, and it can be considered as an important contribution towards a closer integration of psychiatry to medicine.
Accurate clinical staging of dementia in older subjects has not previously been achieved despite the use of such methods as psychometric testing, behavioural rating, and various combinations of simpler psychometric and behavioural evaluations. The Clinical Dementia Rating (CRD), a global rating device, was developed for a prospective study of mild senile dementia--Alzheimer type (SDAT). Reliability, validity, and correlational data are discussed. The CRD was found to distinguish unambiguously among older subjects with a wide range of cognitive function, from healthy to severely impaired.
To determine (1) the number and proportion of Americans living with chronic conditions, and (2) the magnitude of their costs, including direct costs (annual personal health expenditures) and indirect costs to society (lost productivity due to chronic conditions and premature death).
Analysis of the 1987 National Medical Expenditure Survey for prevalence and direct health care costs; indirect costs based on the 1990 National Health Interview Survey and Vital Statistics of the United States.
US population.
For the estimate of prevalence and direct costs, the National Medical Expenditure Survey sample of persons who reported health conditions associated with (1) use of health services or supplies or (2) periods of disability.
None.
The number of persons with chronic conditions, their annual direct health care costs, and indirect costs from lost productivity and premature deaths.
In 1987, 90 million Americans were living with chronic conditions, 39 million of whom were living with more than 1 chronic condition. Over 45% of noninstitutionalized Americans have 1 or more chronic conditions and their direct health care costs account for three fourths of US health care expenditures. Total costs projected to 1990 for people with chronic conditions amounted to $659 billion--$425 billion for direct health care costs and $234 billion in indirect costs.
The prevalence and costs of chronic conditions as a whole have rarely been estimated. Because the number of persons with limitations due to chronic conditions is more regularly reported in the literature, the total prevalence of chronic conditions has perhaps been minimized. The majority of persons with chronic conditions are not disabled, nor are they elderly. Chronic conditions affect all ages. Because persons with chronic conditions have greater health needs at any age, their costs are disproportionately high.
The purpose of this study was to examine the extent to which loneliness mediates the relationship between perceived social support and positive health practices of young adults, ages 22 to 34, by testing a mediational model of relationships in a three-variable system developed through theory and previous research. Data were collected from 70 young adults who were attending classes in a large urban university. They responded to the PRQ85-Part II, the Revised UCLA Loneliness Scale, the Lifestyle Questionnaire, and a demographic data sheet. Statistically significant correlations were found between perceived social support and positive health practices, perceived social support and loneliness, and loneliness and positive health practices. A series of regression analyses designed to test for mediation were performed. The results indicated that loneliness is a dominant mediator in the relationship between perceived social support and positive health practice. Implications for practices are discussed.
Grief is an overlooked but important element of the caregiver experience. This study defines a model of caregiver grief to aid in clinical intervention and to support further research.
This study addressed the grief responses of 87 spouse and adult-child caregivers of patients with progressive dementia representing mild, moderate, severe, and postdeath. Questionnaire data and qualitative findings from 16 semistructured focus group interviews provide the basis for a descriptive model of anticipatory grief in dementia caregiving.
Significant differences emerged between spouse and adult-child caregiver groups as a whole and as a function of Clinical Dementia Rating impairment level. Caregiver grief was found to fluctuate between intellectual, affective, and existential poles depending upon current care demands and expectations.
These findings suggest that anticipatory grief in dementia caregiving is "real" grief, equivalent in intensity and breadth to death-related grief.
Earlier studies have yielded inconsistent findings regarding gender differences with respect to burden and depression among informal community caregivers of dementia patients.
The aim of the study was to determine whether or not there were gender differences in the prevalence of burden and depression among informal caregivers of community-residing dementia patients.
Data from 259 female and 68 male caregivers who were part of the Canadian Study of Health and Aging were analyzed. Depressive symptoms were measured using the Center for Epidemiologic Studies--Depression Scale (CES-D). Burden was assessed using Zarit's Burden Interview. Associations between the outcome variables (depressive symtoms and burden) and the independent variable, gender, were examined using logistic regression.
In multivariable analysis, female caregivers were found to have significantly higher odds than male caregivers of having a score of 33 or higher on Zarit's Burden Interview (OR=2.6; 95% CI 1.0, 6.7). The OR comparing women to men with respect to a high level of depressive symptoms (defined as a score of 16 or more on the CES-D) was not significant (OR=1.3; 95% CI 0.6, 2.9). Poor perceived caregivers health and more behavior disturbance in the patient were associated with significantly higher odds of high levels of caregiver burden and depression.
Adequate assistance must be given to women caregivers to ensure that they are not strained beyond what is clinically healthy. In addition, interventions should target caregivers of behaviorally disturbed patients as well as caregivers who report poor physical health to reduce the negative psychological impact of caregiving.
The purpose of this study was to identify essential information and support needs of family caregivers for individuals with Alzheimer's disease or a related dementia, and to examine the relationship between caregiver characteristics and needs. Caregivers (n=128, response rate=49.4%) returned a survey detailing information needs, support needs, and personal information. The need for information concerning diagnosis/treatment and legal/financial issues was more important than general information about the disease. Specifically, information about health plan coverage was most important. Experienced caregivers also needed legal/financial information, as well as support. Female caregivers rated needs related to support as significantly more important than male caregivers. Practitioners should realize that caregivers may have different information and support needs and these needs may change throughout the caregiving experience.
The purpose of this phenomenological study was to describe the experience of quality of life of women, taking care of husbands with chronic obstructive pulmonary disease (COPD).
• Unstructured, in‐depth, tape‐recorded personal interviews were used to collect data from six women living with husbands with COPD.
• The women ranged from 47 to 69 years in age and their husbands had given up work because of the illness.
• The wives in the study were dissatisfied with their lack of recreation, as well as support from friends, families and health care providers.
• Factors that increased the wife's quality of life were children andgrandchildren and being able to please the husband and care for him until the very end.
The healthcare and social services utilisation of elderly people with mental disorders has not been sufficiently described, although such knowledge could indicate directions for preventive and curative interventions, and suggest unmet service needs. The aim of the present study was to examine cognitive impairment and depressive mood as correlates of specific healthcare and social services utilisation of community-dwelling elderly people. A randomly selected population sample of 1134 community-dwelling individuals aged 65 years and over living in a defined area were interviewed at home. Cognitive impairment was measured by the Mini Mental State Examination and depressive mood by the Centre for Epidemiologic Studies -- Depression scale. Cognitive impairment and depressive mood were related to the number of home care services used, and to the utilisaton of every specific healthcare and social service. After controlling for confounding variables (i.e. age, sex, education, co-residence and disabilities), service utilisation was still predicted by depressive mood, but not by cognitive impairment. Interventions to prevent and cure depressive mood should be considered to decrease the service needs of community-dwelling elderly people. Unmet service needs are suggested since cognitive impairment does not result in increased service utilisation.
Family carers are a major source of help and assistance to the persons they provide care for. They are also major contributors to the welfare system, balancing the national health care expenditure. Increasing attention, in research as well as government policy, is being paid to their role as informal caregivers. Support to family carers seems to be a new 'buzzword' in Swedish Government policy. However, supporting family carers may prove to be a more complex endeavour than one initially might be led to believe. Support could here be understood as any services, assistances, education, information, attitudes, and lay or professional person's provision for the benefit of the family carer. The aim of this systematic review was to identify modes of, and scientific evidence on, support for family carers of cohabiting elderly persons. The method followed a seven-step model: a focused research question was formulated creating a base for deriving search words and inclusion and exclusion criteria for studies. Systematic database searches identified several studies some of which were retrieved, critically appraised and classified by two independent reviewers. A total of 26 articles were finally included, revealing that family carers fear social isolation and wish to network in groups with peers, either for social or for learning needs purposes. Family carers also desire respite care. However, it is unclear whether they actually benefit from any of the above or how service provision should be attempted.
A substantial body of work on the concept of social support has resulted in many definitions, but none have been accepted as definitive. The lack of consensus about the definition of social support has resulted in a lack of consistency and comparability among studies. More important, the validity of any study attempting to measure or influence social support is undermined by the use of generic definitions, which lack contextual sensitivity. In this article concept analysis is used to evaluate definitions of social support to ascertain their utility for research. The authors argue that a contextualized approach to the definition of social support is necessary to improve clarity in research, and results in interventions or practices that are useful. They also assert that the development of a contextualized definition of social support requires qualitative methods to explore the meaning of social support with groups of people for whom intervention research is ultimately intended.
Severe lung disease is known to affect the lives of not only the sufferer but also his/her family. This qualitative phenomenological study identified seven patients with severe lung disease and studied the quality of life of their carers (five female, two male) who were not fully employed, living in the same house or nearby. In a semi-structured interview, the carers were asked about looking after their spouse or relative, whether they had support and the effect of caring on their health and finances. The findings showed the carers' lives to be severely restricted, all carrying a heavy emotional burden of frustration, depression and isolation: part-time jobs were important both financially and to reduce isolation. Family support was vital to their coping, but few had received professional help. All were affected by reduction in income, but claiming allowances was confusing; unpredictability of the disease complicated much-needed recreation and holidays. Findings were similar to previously published data.
The broad aim of the research presented here was to define the constituents and indicators of quality of life (QoL) in older age, in order to offer a more multidimensional and useful model of quality of life, based on the perspectives of older people themselves. This paper focuses on the extent to which self-evaluations of global QoL are influenced by health, psychological and social variables, and social circumstances. It reports the results of a national survey of the quality of life in people aged 65 and over, living at home in Britain. Multiple regression analysis with the self-evaluation of quality of life rating as the dependent variable showed that the overall model (Model 9) of QoL indicators explained 26.7% of the variance in quality of life ratings. This is sizeable given the amorphous nature of this concept. The main independent predictors of self-rated global quality of life were: social comparisons and expectations, personality and psychological characteristics (optimism-pessimism), health and functional status and personal and neighbourhood social capital. These variables explained the highest proportion of the variance between groups in their quality of life ratings. Socio-economic indicators contributed relatively little to the model.
Seventeen empirical studies that relate the ways of coping employed by family caregivers of persons affected by dementia to their health and morale are critically reviewed for the purposes of determining whether there is any consensus regarding ways of coping that serve health-protective functions, and whether the studies' designs and measurement strategies are faithful to the transactional theory of coping upon which they are founded. Due to the use of cross-sectional designs, the adoption of different coping and outcome measures, the lack of specificity and the incomparability of the target stressors, the reliance on retrospective reports, and the use of inappropriate response formats, among other limitations, the interpretability of the cumulative body of empirical findings on caregiver coping is questionable. Ways of strengthening and broadening coping research to make it more fruitful and theoretically coherent are presented.
To identify the differences in loneliness, depression, and social support among Turkish patients with COPD and their spouses.
The convenience sample consisted of 30 patients with COPD and their spouses. Descriptive statistics, Student's t tests, and Pearson product moment correlations were used to analyse the data.
Data were collected during structured interviews in an outpatient clinic in Turkey by using the UCLA Loneliness Scale, the Beck Depression Inventory and Perceived Social Support from Friends and Family scales.
Levels of loneliness, depression, and perceived social support from family and friends were similar for patients and spouses. Loneliness and depression were positively related, but both loneliness and depression were greater with less perceived social support from family and friends for both patients and their spouses.
Patients' and spouses' psychologic reactions to COPD might include feelings of loneliness and depression, which might be alleviated by social support.
This study was carried out to determine why women caring for men report more burden than other caregivers, and to further examine the role of care-recipient problem behaviors as determinants of burden.
A sample of 557 primary caregivers of community-dwelling individuals referred to a memory clinic was used. All care-recipients had a diagnosis of Alzheimer's disease (NINCDS-ADRDA). Data on care-recipient function, caregiver attributes, external supports and caregiver burden were obtained on the first visit. Hierarchical regression models were used to determine the contribution of gender, after controlling for care-recipient status, caregiver attributes, and external supports.
This model explained 46% of the variability in caregiver "role burden", with care-recipient problem behaviors and dependence in instrumental activities of daily living. The caregiver/care-recipient gender interaction explained an additional 4% of the variance (p = 0.001); women caring for men scored 5.61 higher on the burden scale than other caregivers. Specific problem behaviors (e.g., anger) were more problematic for women caregivers than men.
These results indicate that the experience of men and women caregivers may be different despite seemingly identical circumstances, and highlight the need for interventions geared to the specific needs of women caregivers.
The implications for society of increasing life span to 120 years can only be guessed, but comparing the diversity of responses to aging in different countries may give insights into the possible effect. A European Union–funded study of the recipients of community care services in 11 European countries illustrates how such studies can help identify some of the issues.
The study, made possible by the availability of a multidimensional standardized assessment for community care, illustrates how diversity of social and political history and culture results in widely different patterns of dependency in those cared for at home, different levels of formal care, and informal caregiver burden.
There is wide variation in living arrangements, marital status, and dependency between countries. The average age of recipients of community care is approximately 82, regardless of the average age of the national population. In Italy, which has the oldest population in Europe, dependency in people supported at home in extended families is high, with little formal care and significant levels of informal caregiver burden. In contrast the Nordic countries have lower levels of dependency and greater proportions of people with no informal caregiver. In Germany, informal caregiver burden may be related to the regulatory mechanisms rather than dependency and levels of formal care.
With a life expectancy of 120, it will be these 80-year-olds who will be caring for their parents. Although humankind is resourceful, it will require a unified approach to aging to overcome the challenging diversity in our societies.
The authors sought to determine the effect of kinship status (daughters versus wives) and ethnicity (Hispanic/Latino versus Caucasian) on self-efficacy to perform tasks relevant to caregiving in a sample of family caregivers for people with memory problems.
Baseline data were collected from 238 female caregivers who participated in an intervention program. Ethnic and kin relationship groups were compared on measures of caregiver self-efficacy, acculturation within the Hispanic/Latino sample, and the relationship of self-efficacy to key outcome variables.
Hispanics/Latinos reported higher self-efficacy on two of three self-efficacy subscales (Responding to Disruptive Behaviors and Controlling Negative Thoughts About Caregiving). Daughters reported higher self-efficacy on all three self-efficacy scales. Among Hispanics/Latinos, acculturation did not relate strongly to self-efficacy. Caucasian and spousal caregivers appeared to make more generalized appraisals about caregiving.
Higher self-efficacy among Hispanic/Latino caregivers may relate to cultural values about caregiving and/or ethnic differences in appraisal. Wives may be more at risk for low self-efficacy, which may relate to greater role frustration and distress. This study highlights the heterogeneity among caregivers in their experience of caregiving.
The challenge in primary care practice is identifying persons with symptoms of Alzheimer's Disease (AD) who often have limited capacity to recognize their own symptoms and attribute cognitive decline to chronic illness or aging. Brief office visit communications without an informant,such as a spouse or adult child rarely uncover mild stage AD. Clinicians in primary care fail to screen older adults for AD on a routine basis be-cause of insufficient time, inadequate reimbursement for services, and uncertainty about the value of an early diagnosis. Although current pharmacologic and behavioral interventions and patient education do not prevent eventual disease progression, they arguably lead to improvements in understanding, self-efficacy, and quality of life for the patient and family.