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The provision of informal care plays a crucial role in supporting those with long term illness such as MS to stay in the community, but there is no recent United Kingdom (UK) research into the nature of this care provision and how it interacts with professional community care. The aim of this study was to investigate the nature of informal and prof...
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Context 1
... Table 1 here Table 1 presents the demographic profile of the sample. The ratio of women to men was just over 2:1, which approximates the pattern found in other studies, as does the average age of respondents. ...
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Citations
... Distinctive features of MS, namely its tendency to arise in young adulthood, its degenerative course, the absence of a definitive cure, and the variable disease course, unpredictable acute exacerbations, and varying clinical symptoms, can influence the caregiving experience. Many people with MS (PwMS), especially those with moderate to severe disability, require ongoing emotional, physical and practical support in order to manage the challenges of daily life and maintain their independence [4]. Most of this support comes from family members, who provide as much as 80% of home care to PwMS [5]. ...
Background
The broad implications of caring for a family member with a chronic medical condition, such as MS, can lead caregivers to experience a high burden of care. The aim of the study was to describe profile of MS caregivers and their burden and to explore potential factors influencing this burden.
Methods
200 family caregivers of a person with MS completed survey questionnaires across a cross-sectional study. Many information were collected: caregiver socio-demographic and health-related data, caregiving activities, knowledge of MS, coping strategies, mood, social support received and care recipient information. Caregiving burden was measured by the ZBI (Zarit Burden Interview). The extent to which the variables explained caregiver burden was analyzed using a hierarchical approach.
Results
68% of the caregivers reported a perceived burden of care (ZBI score > 20). Our results show that physical and mental related-health variables are important predictive factors of the care burden, explaining much of the observed variance (40.9%).
Conclusion
Family caregivers in MS continue to make up the shortfall produce by national health and welfare systems. We highlighted the importance of good physical and mental health in decreasing perceived burden. Working to alleviate psychological distress through mechanisms focus on reducing worries and perceived burden may be a valid approach.
... Studies specifically focusing on persons with MS have shown that use of informal help in general is more common than use of formal help. A similar patterns has been found in Sweden [16], the UK [17], and the US [18]. In Sweden, it was found that the use of home help (17%) and personal assistance (19%) occurred to about the same extent. ...
... Another possible explanation might be that those who cohabit are more likely to receive informal help from the person(s) with whom they live, which serves as a necessary complement to inadequate formal help [35]. From the total sample, it was evident that the use of informal help was significantly more common than formal help, which is in line with previous research from various national contexts [14,[16][17][18]. ...
Multiple sclerosis (MS) is a chronic neurological disease that may cause several different symptoms, some which may entail the need for help in daily life. The aim of this study was to explore the association between sociodemographic background factors and the use of personal assistance and home help services (home help) among persons with MS in Sweden. The study was based on cross-sectional survey data merged with register data and included 3,863 persons with MS aged 20–51. Binary logistic regression analyses were performed to identify factors associated with the use of personal assistance and home help. The central finding of this study was that grade of impairment, as determined by the Expanded Disability Status Scale for Multiple Sclerosis (EDSS), was the most important variable associated with the use of both personal assistance (p < 0.001, OR 18.83) and home help (p < 0.001, OR 6.83). Living alone and receiving sickness benefit were also both associated with the use of personal assistance (p < 0.001, OR 3.32; p 0.001, OR 3.32) and home help (p 0.004, OR 2.56; p 0.011, OR 2.56). Stating a visible symptom of MS as being the most limiting factor of the disease (p 0.001, OR 2.73) and having a disposable income below the limit for poverty risk (p 0.02, OR 2.16) was associated with the use of personal assistance. Receiving informal, meaning unpaid, help (p 0.049, OR 1.89) was associated with the use of home help. Several background factors were controlled for but were not related to differences in the usage of formal help. The results indicated no significant differences in demographic characteristics that could be linked to unequal distribution. However, differences were found between those using personal assistance and home help. The latter were mainly affected by invisible symptoms, suggesting a plausible influencing factor in the chances of obtaining more comprehensive help in the form of personal assistance. Users of home help were also more likely to receive informal help than users of personal assistance, which may suggest that home help is not sufficient.
... Lebensjahr [29,35]. Abhängig von Schwere und Ausprägung benötigen die Betroffenen Unterstützung oder Pflege in verschiedenen Bereichen des Lebens [48,51,21,47]. Es zeigt sich, dass sich pflegebedürftige Menschen häufig dafür entscheiden, nicht von einem Pflegedienst, sondern von dem Ehepartner, einem Familienmitglied oder Freund gepflegt zu werden [10]. ...
Zusammenfassung Einleitung: Aufgrund der mit Multipler Sklerose (MS) ver-bundenen Symptome werden 90 % der pflegebedürftigen MS Patienten von pflegenden Angehörigen (auf Englisch: informal caregivers; ICG) versorgt. Die pflegebedingte Ver-antwortung führt zu subjektiver Belastung der ICG, welche körperliche und psychische Gesundheit der ICG negativ be-einflusst. Die vorliegende Literaturarbeit zielte darauf ab, Risiko-und Schutzfaktoren zu identifizieren. Methode: In den Datenbanken PubMed, PsycInfo, PsycArtic-les und PubPsych wurde anhand einer Suchsyntax eine sys-tematische Literaturrecherche durchgeführt. Inkludiert wur-den durch Peer Reviews überprüfte quantitative Studien, die in oder nach 2011 auf Deutsch oder Englisch erschienen waren und ein validiertes Messinstrument zur Erfassung subjektiver Belastung nutzten. Ergebnisse: Die inkludierten Studien (n = 11) identifizierten ICG-und patientenspezifische Risiko-und Schutzfaktoren, die sich verstärkend oder reduzierend auf die subjektive Belastung auswirkten. ICG-spezifische Risiko-und Schutz-faktoren für subjektive Belastung waren Alter, Beruf und finanzielle Situation der ICG, während die patientenspe
... 4 Given the relatively early onset and gradual but lifelong course of MS, individuals with this illness often need an informal caregiver. 5 Research shows that being an MS caregiver can have a profound effect on one's own mental and physical health. [6][7][8][9][10][11][12] A variety of studies have shown the deleterious effects that caregiving can have on MS caregiver mental health. ...
... Due to the wide-ranging difficulties associated with MS, individuals often require care and support from informal caregivers, usually family members [9]. Caregivers often provide significant assistance with personal, medical, homemaking, mobility, and leisure tasks [10][11][12][13][14]. Providing care for an individual with MS has been associated with reduced caregiver mental health, physical health, and quality of life, as well as social and financial difficulties [9,[15][16][17][18]. ...
Background. Multiple sclerosis (MS) rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory), health-related quality of life (HRQOL; Short Form-36), and social support (Interpersonal Support Evaluation List-12) in 81 (66.7% women) Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health (= 0.006), HRQOL (< 0.001), and social support (< 0.001). This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, = 0.018) and for nearly three times as many months (66.31 versus 24.30, = 0.002). Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America-particularly for women caregivers-should address the influence of gender-role conformity on care and psychosocial functioning.
... [1][2][3][4] Consequently, many people with MS (PwMS), especially those individuals with moderate-to-severe disability (ie, significant walking limitations that require support for gait PDDS 3-7 or EDSS ≥6), often need emotional, physical and instrumental support to manage associated life roles and maintain independence. 5,6 Providing this on-going support falls primarily on the family caregivers 7,8 who may spend up to 10 hours per day for caregiving activities. 9,10 Together this evidence suggests that the impact of MS does not rest solely on the individual with disease and that PwMS and their family caregivers often need to adapt to its presence as an interdependent caregiver/ care-recipient dyad. ...
Background:
Physical activity (PA) is beneficial for all people, yet people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with the disease who have moderate-to-severe disability and their family caregivers. For researchers and clinicians to effectively promote PA among caregiver/care-recipient dyads with moderate-to-severe MS, a comprehensive understanding of the shared PA experiences of these dyads would be beneficial.
Objective:
We explored shared experiences of caregiver/care-recipient dyads affected by moderate-to-severe MS about PA and directions for intervention.
Methods:
Six focus groups with 23 people with moderate-to-severe MS and 12 family caregivers were conducted. Data were analysed using a constant comparative approach.
Results:
Three major themes emerged as follows: (i) PA is a continuum, (ii) cycle of disengagement and (iii) cycle of adjustment. The first theme captured the dyads understanding that PA falls along a continuum ranging from highly structured to unstructured activities. Cycle of disengagement captured the experiences of dyads engaging in little or no PA. These dyads perceived internal and external issues as drivers of the cycle of disengagement, while availability of supportive programmes and services or people helped the dyads to break out of the cycle. When the cycle of disengagement was broken, the dyads described moving towards the cycle of adjustment, where they were able to learn skills and take action to incorporate PA into daily routines.
Conclusion:
This research highlights the need to adopt an integrative approach that acknowledges the caregiver/care-recipient dyad with moderate-to-severe MS as a focus for PA intervention.
... Researchers have found that caregivers providing care for individuals with MS also experience a significant amount of caregiving related stress, which in turn can negatively influence their quality of life [12][13][14][15]. Quality of life (QoL) refers to the caregivers' subjective evaluation of their physical and psychological health, as well as their social relationships and environment [16]. ...
Background:
Caregivers of individuals with MS may experience unique caregiver strain due to the age at onset and progressive nature of the disease. Additionally, because MS is more prevalent in women, men often become spousal caregivers. However, gender differences in psychosocial adjustment among caregivers have not been fully explored.
Objective:
The purpose of this study was to explore gender differences in the need for various supports and type of social support needed, caregiver strain, and quality of life among caregivers for individuals with MS.
Methods:
106 caregivers participated in this study. Independent sample t-tests and multiple regression analyses were conducted to examine gender differences in strain, need for supports, social support, and quality of life.
Results:
Analyses revealed gender difference among important psychosocial variables. Specifically, women reported higher levels of caregiver strain, higher needs for emotional support, and higher perceived social support. Additionally, multiple regression analyses revealed an inverse relationship between expressed emotional needs and quality of life for men, but not for women.
Conclusions:
MS caregivers experience significant strain that diminishes quality of life. Social support and needs fulfillment can act to buffer this stress; however, results indicate that this varies by gender, with gender differences observed in strain, perceived support, and expressed needs among MS caregivers. The study implications for rehabilitation research are discussed.
... Due to the wide-ranging difficulties associated with MS, individuals often require care and support from informal caregivers, usually family members [9]. Caregivers often provide significant assistance with personal, medical, homemaking, mobility, and leisure tasks [10][11][12][13][14]. Providing care for an individual with MS has been associated with reduced caregiver mental health, physical health, and quality of life, as well as social and financial difficulties [9,[15][16][17][18]. ...
Background. Multiple sclerosis (MS) rates in Latin America are increasing, and caregivers there experience reduced mental and physical health. Based on rigid gender roles in Latin America, women more often assume caregiving duties, yet the differential impact on women of these duties is unknown. Methods. This study examined gender differences in mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-Esteem Scale, State-Trait Anxiety Inventory, and Zarit Burden Inventory), health-related quality of life (HRQOL; Short Form-36), and social support (Interpersonal Support Evaluation List-12) in 81 (66.7% women) Mexican MS caregivers. Results. As compared to men caregivers, women had lower mental health, HRQOL, and social support. This was partially explained by women caregivers providing care for nearly twice as many hours/week as men (79.28 versus 48.48, ) and for nearly three times as many months (66.31 versus 24.30, ). Conclusions. Because gender roles in Latin America influence women to assume more substantial caregiving duties, MS caregiver interventions in Latin America—particularly for women caregivers—should address the influence of gender-role conformity on care and psychosocial functioning.
... 4 Given the relatively early onset and gradual but lifelong course of MS, individuals with this illness often need an informal caregiver. 5 Research shows that being an MS caregiver can have a profound effect on one's own mental and physical health. [6][7][8][9][10][11][12] A variety of studies have shown the deleterious effects that caregiving can have on MS caregiver mental health. ...
Background:
Multiple sclerosis (MS) rates are increasing in Latin America, and caregiving for an individual with MS is associated with poorer mental and physical health outcomes. No existing research has examined the relation between mental health and health-related quality of life (HRQOL) in MS caregivers in Latin America.
Methods:
The present study examined the association between mental health (Patient Health Questionnaire-9, Satisfaction with Life Scale, Rosenberg Self-esteem Scale, State-Trait Anxiety Inventory) and HRQOL (36-item Short Form Health Status Survey) in 81 Mexican MS caregivers.
Results:
A canonical correlation analysis uncovered a large, significant overall association between mental health and HRQOL, with 52.7% of the variance shared between the two sets of constructs. When individual canonical loadings were examined in this analysis, the most substantial pattern that emerged was between depression and general health. Four regressions controlling for demographic variables found that HRQOL uniquely accounted for 19.0% of the variance in caregiver anxiety, 32.5% in depression, 13.5% in satisfaction with life, and 14.3% in self-esteem.
Conclusions:
These findings demonstrated a strong association between HRQOL and mental health, which points to directions for future studies on interventions for MS caregivers, particularly in Mexican and other Latino populations.
... 22 However, care partners are estimated to provide 80% of the care to patients with MS, 23 and this trend is expected to grow during the next 20 years. 1,[24][25][26] We aimed to understand the biopsychosocial ramifications of being an MS care partner in a sample of 1333 MS care partners. We found that physical and psychological health concerns were common. ...
Background:
Caring for someone with multiple sclerosis (MS) can be a stressful experience that requires clinical attention. We investigated the impact of caregiver stress on the emotional well-being and physical health of the MS care partner using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry.
Methods:
Care partners of NARCOMS participants were invited to complete an online questionnaire that captured demographic characteristics, health status, caregiver burden as measured by the Zarit Caregiver Burden Interview, and impact of caregiving on employment.
Results:
Of 1446 care partners who agreed to participate, 1333 had complete data. Most were men (n = 825, 61.9%), with a mean (SD) age of 51.1 (11.2) years. The mean (SD) Zarit total score was 24.6 (15.1), placing the overall group in the mild caregiver burden range. Compared with male care partners, female care partners reported higher levels of burden and stress and more medication use for stress/anxiety and mood disorders. Male care partners were more likely to report physical concerns. Care partners of people with primary progressive MS reported greater perceived burden than did partners of people with secondary progressive MS and relapsing-remitting MS. More than 40% of care partners (559 of 1288) had missed work during the past year owing to caregiving responsibilities.
Conclusions:
Care partners of people with MS have substantial physical and psychological health concerns and experience an adverse impact on employment. Future research should evaluate how to mitigate the adverse effects of caregiving and evaluate positive aspects of the role.
