Web-Based Interventions for Family Caregivers: A Scoping Review
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Abstract
Background: The ‘greying’ of the population will increasingly lead to reliance on the family for care in the community. Family caregivers save the Canadian and American healthcare systems a combined $475 billion annually and help elders to “age at home”. Caregivers are best able to maintain their health and caregiving role when they are well-supported. The time and geographic restrictions that caregivers face have led to the development of many web-based support interventions. Existing systematic reviews of these interventions have largely focused on dementia caregivers and virtual caregiver communities. Consequently, our understanding of the broader nature of web-based caregiver support and its impact across aging-related illnesses remains limited.
Objective: To conduct both a literature and concept mapping of this body of research to answer: (1) What is the size and location of the literature on web-based caregiver interventions? (2) What is the state and nature of these interventions? and (3) What similarities/differences exist across illness populations?
Methods: A scoping review was conducted. Medline, PsychINFO, EMBASE and CINAHL databases (January 1990-December, 2013) were systematically searched for studies that investigated web-based interventions for family caregivers to elderly individuals. We limited the search to the top five aging-related illnesses: 1) Stroke; 2) Cancer; 3) Alzheimer’s Disease/Dementia; 4) Chronic Obstructive Pulmonary Disorder (COPD) and 5) Diabetes. Only empirical research was included. Inclusion/exclusion criteria were applied, the data was charted and a narrative synthesis conducted.
Results: Forty-two studies met our inclusion criteria. Nearly all studies were conducted in North America (95.2%). The majority focused on Alzheimer’s or dementia caregivers (52.4%), with the remainder investigating cancer (16.7%), stroke (16.7%), frailty (4.8%) and various neurodegenerative diseases (9.5%). No web-based interventions for COPD or diabetes caregivers were found. A typical study included mostly females caring for a spouse, where the web-based intervention consisted of educational resources and chatting with healthcare professionals and peers. Most studies were in the development/implementation (33%) or evaluation (41%) stage. Development studies described piloting the intervention and testing for feasibility/usability. For evaluative studies, two-group designs with randomization were typical but only four studies (10%) reported a Randomized Control Trial (RCT). Across illness populations, most evaluative studies reported significant results in favor of the web-based intervention format and its positive effect on social and health outcomes (e.g. depression, burden, mastery and social support). Web-based interventions for cancer caregivers were predominantly in the evaluation stage (71%), whereas only half of the Alzheimer’s/dementia interventions and 29% of the stroke interventions had reached evaluation.
Conclusion: There is a vast body of literature investigating web-based interventions for caregivers of aging individuals. The focus has been on Alzheimer’s/dementia in North America, suggesting the need for a more global emphasis on web-based support for caregivers to other aging-related illness populations. The web appears to be an effective mode of support-delivery. Consequently, the field should move from descriptive studies into the evaluation of interventions using rigours RCT designs. Future studies should evaluate and identify the most effective components of web-based interventions in order to optimize health and social outcomes for caregivers.
Objective: To conduct both a literature and concept mapping of this body of research to answer: (1) What is the size and location of the literature on web-based caregiver interventions? (2) What is the state and nature of these interventions? and (3) What similarities/differences exist across illness populations?
Methods: A scoping review was conducted. Medline, PsychINFO, EMBASE and CINAHL databases (January 1990-December, 2013) were systematically searched for studies that investigated web-based interventions for family caregivers to elderly individuals. We limited the search to the top five aging-related illnesses: 1) Stroke; 2) Cancer; 3) Alzheimer’s Disease/Dementia; 4) Chronic Obstructive Pulmonary Disorder (COPD) and 5) Diabetes. Only empirical research was included. Inclusion/exclusion criteria were applied, the data was charted and a narrative synthesis conducted.
Results: Forty-two studies met our inclusion criteria. Nearly all studies were conducted in North America (95.2%). The majority focused on Alzheimer’s or dementia caregivers (52.4%), with the remainder investigating cancer (16.7%), stroke (16.7%), frailty (4.8%) and various neurodegenerative diseases (9.5%). No web-based interventions for COPD or diabetes caregivers were found. A typical study included mostly females caring for a spouse, where the web-based intervention consisted of educational resources and chatting with healthcare professionals and peers. Most studies were in the development/implementation (33%) or evaluation (41%) stage. Development studies described piloting the intervention and testing for feasibility/usability. For evaluative studies, two-group designs with randomization were typical but only four studies (10%) reported a Randomized Control Trial (RCT). Across illness populations, most evaluative studies reported significant results in favor of the web-based intervention format and its positive effect on social and health outcomes (e.g. depression, burden, mastery and social support). Web-based interventions for cancer caregivers were predominantly in the evaluation stage (71%), whereas only half of the Alzheimer’s/dementia interventions and 29% of the stroke interventions had reached evaluation.
Conclusion: There is a vast body of literature investigating web-based interventions for caregivers of aging individuals. The focus has been on Alzheimer’s/dementia in North America, suggesting the need for a more global emphasis on web-based support for caregivers to other aging-related illness populations. The web appears to be an effective mode of support-delivery. Consequently, the field should move from descriptive studies into the evaluation of interventions using rigours RCT designs. Future studies should evaluate and identify the most effective components of web-based interventions in order to optimize health and social outcomes for caregivers.
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