Improving the Quality of Life of Family Caregivers of People with Alzheimer's Disease through Virtual Communities of Practice: A Quasiexperimental Study
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Abstract
Caring for a person with dementia burdens family caregivers, and there is a close
negative relationship between this burden and their quality of life (QoL). Research
suggests that caregivers' main needs are information and training about the disease
and support from others experiencing the same situation, and Internet interventions
hold considerable promise for meeting these needs. Virtual communities of practice
(VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve
a sense of trust in the community. This paper seeks to evaluate the impact of participating
in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer's.
Results show QoL before and after the intervention changed significantly. The impact
of VCoP on caregivers' overall QoL is moderated by age and relation with the person
with Alzheimer's, specifically those over 65, and spouses. VCoPs allow interaction
and knowledge sharing among caregivers which provide them mainly with information
and support from peers helping them to meet their needs. Furthermore, caregivers'
QoL did not decrease when their relative deteriorated functionally, which could be
due to the participation in VCoP. Although we found significant pre- and post differences
in caregivers' health literacy, we must report the ambiguous result that this variable
only impacts on QoL's physical domain. Participants also reported that they had a
positive experience because the App was perceived to be a useful tool, because they
could manage their own participation and they met peers and felt less lonely. Results
suggest that participation in a VCoP impacts positively on caregivers' QoL.
Background Electronic health resources are helpful only when people are able to use them, yet there remain few tools available to assess consumers’ capacity for engaging in eHealth. Over 40% of US and Canadian adults have low basic literacy levels, suggesting that eHealth resources are likely to be inaccessible to large segments of the population. Using information technology for health requires eHealth literacy—the ability to read, use computers, search for information, understand health information, and put it into context. The eHealth Literacy Scale (eHEALS) was designed (1) to assess consumers’ perceived skills at using information technology for health and (2) to aid in determining the fit between eHealth programs and consumers. Objectives The eHEALS is an 8-item measure of eHealth literacy developed to measure consumers’ combined knowledge, comfort, and perceived skills at finding, evaluating, and applying electronic health information to health problems. The objective of the study was to psychometrically evaluate the properties of the eHEALS within a population context. A youth population was chosen as the focus for the initial development primarily because they have high levels of eHealth use and familiarity with information technology tools. Methods Data were collected at baseline, post-intervention, and 3- and 6-month follow-up using control group data as part of a single session, randomized intervention trial evaluating Web-based eHealth programs. Scale reliability was tested using item analysis for internal consistency (coefficient alpha) and test-retest reliability estimates. Principal components factor analysis was used to determine the theoretical fit of the measures with the data. Results A total of 664 participants (370 boys; 294 girls) aged 13 to 21 (mean = 14.95; SD = 1.24) completed the eHEALS at four time points over 6 months. Item analysis was performed on the 8-item scale at baseline, producing a tight fitting scale with α = .88. Item-scale correlations ranged from r = .51 to .76. Test-retest reliability showed modest stability over time from baseline to 6-month follow-up (r = .68 to .40). Principal components analysis produced a single factor solution (56% of variance). Factor loadings ranged from .60 to .84 among the 8 items. Conclusions The eHEALS reliably and consistently captures the eHealth literacy concept in repeated administrations, showing promise as tool for assessing consumer comfort and skill in using information technology for health. Within a clinical environment, the eHEALS has the potential to serve as a means of identifying those who may or may not benefit from referrals to an eHealth intervention or resource. Further research needs to examine the applicability of the eHEALS to other populations and settings while exploring the relationship between eHealth literacy and health care outcomes.
Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.
Introduction Everybody talks about e-health these days, but few people have come up with a clear definition of this comparatively new term. Barely in use before 1999, this term now seems to serve as a general "buzzword," used to characterize not only "Internet medicine", but also virtually everything related to computers and medicine. The term was apparently first used by industry leaders and marketing people rather than academics. They created and used this term in line with other "e-words" such as e-commerce, e-business, e-solutions, and so on, in an attempt to convey the promises, principles, excitement (and hype) around e-commerce (electronic commerce) to the health arena, and to give an account of the new possibilities the Internet is opening up to the area of health care. Intel, for example, referred to e-health as "a concerted effort undertaken by leaders in health care and hi-tech industries to fully harness the benefits available through convergence of the Internet and health care." Because the Internet created new opportunities and challenges to the traditional health care information technology industry, the use of a new term to address these issues seemed appropriate. These "new" challenges for the health care information technology industry were mainly (1) the capability of consumers to interact with their systems online (B2C = "business to consumer"); (2) improved possibilities for institution-to-institution transmissions of data (B2B = "business to business"); (3) new possibilities for peer-to-peer communication of consumers (C2C = "consumer to consumer"). So, how can we define e-health in the academic environment? One JMIR Editorial Board member feels that the term should remain in the realm of the business and marketing sector and should be avoided in scientific medical literature and discourse. However, the term has already entered the scientific literature (today, 76 Medline-indexed articles contain the term "e-health" in the title or abstract). What remains to be done is - in good scholarly tradition - to define as well as possible what we are talking about. However, as another member of the Editorial Board noted, "stamping a definition on something like e-health is somewhat like stamping a definition on 'the Internet': It is defined how it is used - the definition cannot be pinned down, as it is a dynamic environment, constantly moving." It seems quite clear that e-health encompasses more than a mere technological development. I would define the term and concept as follows: e-health is an emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, the term characterizes not only a technical development, but also a state-of-mind, a way of thinking, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology. This definition hopefully is broad enough to apply to a dynamic environment such as the Internet and at the same time acknowledges that e-health encompasses more than just "Internet and Medicine". As such, the "e" in e-health does not only stand for "electronic," but implies a number of other "e's," which together perhaps best characterize what e-health is all about (or what it should be). Last, but not least, all of these have been (or will be) issues addressed in articles published in the Journal of Medical Internet Research. The 10 e's in "e-health" Efficiency - one of the promises of e-health is to increase efficiency in health care, thereby decreasing costs. One possible way of decreasing costs would be by avoiding duplicative or unnecessary diagnostic or therapeutic interventions, through enhanced communication possibilities between health care establishments, and through patient involvement. Enhancing quality of care - increasing efficiency involves not only reducing costs, but at the same time improving quality. E-health may enhance the quality of health care for example by allowing comparisons between different providers, involving consumers as additional power for quality assurance, and directing patient streams to the best quality providers. Evidence based - e-health interventions should be evidence-based in a sense that their effectiveness and efficiency should not be assumed but proven by rigorous scientific evaluation. Much work still has to be done in this area. Empowerment of consumers and patients - by making the knowledge bases of medicine and personal electronic records accessible to consumers over the Internet, e-health opens new avenues for patient-centered medicine, and enables evidence-based patient choice. Encouragement of a new relationship between the patient and health professional, towards a true partnership, where decisions are made in a shared manner. Education of physicians through online sources (continuing medical education) and consumers (health education, tailored preventive information for consumers) Enabling information exchange and communication in a standardized way between health care establishments. Extending the scope of health care beyond its conventional boundaries. This is meant in both a geographical sense as well as in a conceptual sense. e-health enables consumers to easily obtain health services online from global providers. These services can range from simple advice to more complex interventions or products such a pharmaceuticals. Ethics - e-health involves new forms of patient-physician interaction and poses new challenges and threats to ethical issues such as online professional practice, informed consent, privacy and equity issues. Equity - to make health care more equitable is one of the promises of e-health, but at the same time there is a considerable threat that e-health may deepen the gap between the "haves" and "have-nots". People, who do not have the money, skills, and access to computers and networks, cannot use computers effectively. As a result, these patient populations (which would actually benefit the most from health information) are those who are the least likely to benefit from advances in information technology, unless political measures ensure equitable access for all. The digital divide currently runs between rural vs. urban populations, rich vs. poor, young vs. old, male vs. female people, and between neglected/rare vs. common diseases. In addition to these 10 essential e's, e-health should also be easy-to-use, entertaining (no-one will use something that is boring!) and exciting - and it should definitely exist! We invite other views on the definition of e-health and hope that over time the journal will be filled with articles which together elucidate the realm of e-health. Gunther Eysenbach Editor, Journal of Medical Internet Research
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