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.
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"However, the results should be interpreted with caution as the review authors acknowledged the possibility of publication bias in their work, and only half of the included studies evaluated befriending by lay volunteers, as in our trial. A second systematic review evaluated interventions to reduce loneliness and social isolation in older people , including two randomised evaluations of telephone interventions [16,60], and one of a combination one-to-one/group programme like that evaluated in this paper . Whilst the quality of most of the included studies was poor, the review concluded that effective interventions had a theoretical basis and offered “social activity and/or support within a group format” . "
[Show abstract][Hide abstract] ABSTRACT: Loneliness in older people is associated with poor health-related quality of life (HRQoL). We undertook a parallel-group randomised controlled trial to evaluate the effectiveness and cost-effectiveness of telephone befriending for the maintenance of HRQoL in older people. An internal pilot tested the feasibility of the trial and intervention.
Participants aged >74 years, with good cognitive function, living independently in one UK city were recruited through general practices and other sources, then randomised to: (1) 6 weeks of short one-to-one telephone calls, followed by 12 weeks of group telephone calls with up to six participants, led by a trained volunteer facilitator; or (2) a control group. The main trial required the recruitment of 248 participants in a 1-year accrual window, of whom 124 were to receive telephone befriending. The pilot specified three success criteria which had to be met in order to progress the main trial to completion: recruitment of 68 participants in 95 days; retention of 80% participants at 6 months; successful delivery of telephone befriending by local franchise of national charity. The primary clinical outcome was the Short Form (36) Health Instrument (SF-36) Mental Health (MH) dimension score collected by telephone 6 months following randomisation.
We informed 9,579 older people about the study. Seventy consenting participants were randomised to the pilot in 95 days, with 56 (80%) providing valid primary outcome data (26 intervention, 30 control). Twenty-four participants randomly allocated to the research arm actually received telephone befriending due to poor recruitment and retention of volunteer facilitators. The trial was closed early as a result. The mean 6-month SF-36 MH scores were 78 (SD 18) and 71 (SD 21) for the intervention and control groups, respectively (mean difference, 7; 95% CI, -3 to 16).
Recruitment and retention of participants to a definitive trial with a recruitment window of 1 year is feasible. For the voluntary sector to recruit sufficient volunteers to match demand for telephone befriending created by trial recruitment would require the study to be run in more than one major population centre, and/or involve dedicated management of volunteers.Trial registration: ISRCTN28645428.
"It is argued that these behaviors could not be achieved unless we provide appropriate social support for patients [8,9]. However, as there are many types of social support [10,11], patients with diabetes also could receive different types of support for self-care such as informational, emotional and instrumental [12-14]. "
[Show abstract][Hide abstract] ABSTRACT: Background
Social support has proved to be one of the most effective factors on the success of diabetic self-care. This study aimed to develop a scale for evaluating social support for self-care in middle-aged patients (30–60 years old) with type II diabetes.
This was a two-phase qualitative and quantitative study. The study was conducted during 2009 to 2011 in Tehran, Iran. In the qualitative part, a sample of diabetic patients participated in four focus group discussions in order to develop a preliminary item pool. Consequently, content and face validity were performed to provide a pre-final version of the questionnaire. Then, in a quantitative study, reliability (internal consistency and test-retest analysis), validity and factor analysis (both exploratory and confirmatory) were performed to assess psychometric properties of the scale.
A 38-item questionnaire was developed through the qualitative phase. It was reduced to a 33-item after content validity. Exploratory factor analysis loaded a 30-item with a five-factor solution (nutrition, physical activity, self monitoring of blood glucose, foot care and smoking) that jointly accounted for 72.3% of observed variance. The confirmatory factor analysis indicated a good fit to the data. The Cronbach’s alpha coefficient showed excellent internal consistency (alpha=0.94), and test-retest of the scale with 2-weeks intervals indicated an appropriate stability for the scale (ICC=0.87).
The findings showed that the designed questionnaire was a valid and reliable instrument for measuring social support for self-care in middle-aged patients with type II diabetes. It is an easy to use questionnaire and contains the most significant diabetes related behaviors that need continuous support for self-care.
Full-text · Article · Nov 2012 · BMC Public Health
"While it is now acknowledged that carers often gain satisfaction from their caring role, for example [3-7], it is also well recognised that being a carer can be stressful and may adversely affect carers’ social networks and physical and emotional health . Especially in the long-term, social isolation amongst carers is frequently highlighted, for example [9,10]. Carers often report high levels of stress, depression and anxiety as well as physical health problems . "
[Show abstract][Hide abstract] ABSTRACT: Background
Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.
Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.
Results and Discussion
Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.
For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.