| Literature DB >> 28928109 |
Cassioppée Guay1,2, Claudine Auger1,2, Louise Demers1,3, W Ben Mortenson4,5,6, William C Miller4,5, Dominique Gélinas-Bronsard1,2, Sara Ahmed2,7.
Abstract
BACKGROUND: When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions.Entities:
Keywords: Internet; Internet-based interventions; aged; behavior change; caregivers; systematic review
Mesh:
Year: 2017 PMID: 28928109 PMCID: PMC5627044 DOI: 10.2196/jmir.7896
Source DB: PubMed Journal: J Med Internet Res ISSN: 1438-8871 Impact factor: 5.428
Figure 1PRISMA flowchart of the search strategy and results.
Characteristics of the study population of included studies (N=12).
| Author | Country | N | Mean age (SD)b | Femaleb | Relationship with care | Diagnosis of |
| Beauchamp et al [ | USA | 299 | 46.9 (12.2) | 73% | Child (67%) | Dementia |
| Blom et al [ | Netherlands | 245 | 61.2 (12.37) | 69.4% | Spouse (58.4%) | Dementia |
| Chih et al [ | USA | 235 | 56 | 64.2% | Spouse/partner (69.3%) | Cancer |
| Cristancho-Lacroix et al [ | France | 49 | 64.2 (10.3)a | 16 (64%)a | Child (64%)a | Dementia |
| DuBenske et al [ | USA | 246 | 55.56 | 68.3% | Spouse/partner (72%) | Cancer |
| Eames et al [ | Australia | 61 | 55.5 | 64% | Spouse/partner (67%) | Stroke |
| Kim et al [ | South Korea | 36 | 53 (13.7) | NR | Spouse (66.7%)a | Stroke |
| McLaughlin et al [ | USA | 201 | NR, 34.6% aged 51-60a | 86.4%a | NR | TBI |
| Namkoong et al [ | USA | 285 | 55.56 | 68.3% | NR | Cancer |
| Pierce et al [ | USA | 103 | 54 (12.2)a | 69.4%a | Wife (41.7%)a | Stroke |
| Smith et al [ | USA | 32 | 55.3 (6.9)a | 100% | Wife (100%) | Stroke |
| Torkamani et al [ | UK, Spain, and Greece | 60 | 60.69 (13.90) | 45% | NR | Dementia |
aFor intervention group only.
bNR: none reported; SD: standard deviation; TBI: traumatic brain injury.
Description of the intervention and control groups of included studies (N=12).
| Author | Intervention | Control group | ||||
| na | Durationb | Description | na | Description | ||
| Beauchamp et al [ | 150 | 30 days | Caregiver’s Friend: Dealing with Dementia—an ongoing worksite Web-based support program providing materials tailored to the needs of caregivers in 3 distinct modules (being a caregiver, coping with emotions, and common difficulties) | 149 | Usual care wait list | |
| Blom et al [ | 149 | 5-6 months | Mastery Over Dementia: a 9-lesson online program; the first 8 lessons followed the same sequence: provision of information, exercises, homework, and feedback; lessons were about coping with behavioral problems, relaxation, arranging help from others, changing nonhelping thoughts, and communication; final lesson was a recap and booster session | 96 | E-bulletin sent by email every 3 weeks for 6 months; content did not overlap with intervention | |
| Chih et al [ | 118 | 12-24 months | Comprehensive Health Enhancement Support System (CHESS): a password-protected website in which users self-directed to a variety of services (information, communication, and coaching); content covered cancer, caregiving and palliative care, emotional distress, use of coping techniques, and communication techniques | 117 | Access to the same intervention, without one component (clinical report) for 12-24 months | |
| Cristancho-Lacroix et al [ | 25 | 12 weeksc | Diapason: a password-protected website offering information, skills training and a forum for caregivers; content was divided in 12 thematic sessions with videos covering caregiver stress, understanding the disease, maintaining the loved ones’ autonomy, understanding their reactions, coping with behavioral and emotional troubles, communicating, improving their daily lives, avoiding falls, pharmacological and nonpharmacological interventions for caregivers, social and financial support, and about the future | 24 | Usual care | |
| DuBenske et al [ | 124 | 2 years or up to 13 months after the death of the care recipientc | Comprehensive Health Enhancement Support System (CHESS): a password-protected website in which users self-directed to a variety of services (information, communication, and coaching); content covered cancer, caregiving and palliative care, emotional distress, use of coping techniques, and communication techniques | 122 | Access to a list of cancer and palliative care websites constructed from the opinions of clinicians in addition to usual care | |
| Eames et al [ | 31 | 3 monthsc | What You Need to Know About Stroke: an educational package online containing a list of 34 topics regarding stroke; the Web-based intervention was reinforced with 3 face-to-face and 3 telephone meetings with participants | 30 | Usual care for the care recipient | |
| Kim et al [ | 18 | 9 weeks | A Web-based program incorporating education and resources to support self-efficacy in the home setting. Content was divided in nine video sessions covering three themes: understanding stroke, recurrence prevention, and family life | 18 | Access to an e-bulletin over the course of 6 months | |
| McLaughlin et al [ | 104 | 3 months | Brain Injury Partner: a Web-based program designed to improve family advocacy skills with content covering advocacy skills, strategies for reducing stress, and to determine necessary professional support needs | 97 | Access to the Brain Injury Association of America (BIAUSA) | |
| Namkoong et al [ | 141 | 2 years | Comprehensive Health Enhancement Support System (CHESS): a password-protected website in which users self-directed to a variety of services (information, communication, and coaching); content covered cancer, caregiving and palliative care, emotional distress, use of coping techniques, and communication techniques | 144 | Access to a list of high-quality patient-directed cancer and palliative care websites in addition to usual care | |
| Pierce et al [ | 51 | 1 year | Caring-Web: an educational and support intervention that answered questions, discussed options, and gave up-to-date information covering frequently requested topics like stroke disease process, safe transfer techniques, and emotional changes | 52 | Specific instructions to not buy or use Internet during the study in addition to usual care | |
| Smith et al [ | 15 | 11 weeks | A Web-based conferencing and video education intervention designed to provide the caregiver with knowledge, resources, and skills; content was divided in 9 weekly video topics covering how to get in touch with your feelings as a caregiver, understanding what it’s like to be a care recipient, being a good listener, nonverbal behavior, choice/control/predictability, relaxation and positive imagery to control stress, and the role of pleasant activities | 17 | Access only to one component of the intervention that presents links to resources | |
| Torkamani et al [ | 30 | 6 months | A technology pLatform for the Assisted living of Dementia elDerly Individuals and their carers (ALADDIN): a Web-based program designed to provide support and information with content covering dementia and relaxation/exercises techniques | 30 | No attention or intervention given | |
aBefore attrition.
bLength of access to intervention.
cIn addition to usual care.
Risk of bias.a
| Author | Selection bias | Performance bias | Detection bias | Attrition bias | |
| Random sequence generation | Allocation concealment | Single blind | Blinding of outcome assessor | Missing data | |
| Beauchamp et al [ | + | + | – | + | + |
| Blom et al [ | + | + | + | + | – |
| Chih et al [ | + | + | – | + | – |
| Cristancho-Lacroix et al [ | + | + | – | – | – |
| DuBenske et al [ | + | + | – | + | – |
| Eames et al [ | + | + | – | + | + |
| Kim et al [ | + | + | – | ? | + |
| McLaughlin et al [ | + | + | – | + | + |
| Namkoong et al [ | + | + | – | + | – |
| Pierce et al [ | + | + | – | ? | – |
| Smith et al [ | + | + | – | + | – |
| Torkamani et al [ | + | + | – | ? | ? |
a+: low risk of bias; – high risk of bias; ?: unclear risk of bias.
Component categoriesa for each category of the Internet-based interventions.
| Author | Multimedia | Interactive online activitiesb | Guidance and supportive feedbackb | Otherb | |
| Eames et al [ | Text | NR | NR | NR | |
| Pierce et al [ | Text | NR | Professional support: nurse specialist and rehabilitation team respond to questions with a private asynchronous module (email forum); peer support: asynchronous discussions facilitated by a nurse (email) | List of relevant Web links | |
| Torkamani et al [ | Text | Online questionnaires on CR and CG health status | Professional support: clinicians receive answers from IOA, facilitating the speedy delivery of appropriate interventions; clinicians are also reachable with a “contact us” button; peer support: asynchronous discussion sessions (forum) | Musical entertainment; relaxation and exercise techniques | |
| Beauchamp et al [ | Text; videos | Online questionnaires on CG personal situation; changing role button to select the relationship with CR | NR | IOA used to tailor content; testimonials | |
| McLaughlin et al [ | Text; videos | Video-based skills exercises | NR | List of relevant Web links and articles | |
| Blom et al [ | Text; videos | Homework and exercises online; evaluation at the start and end of each lesson | Professional support: psychologist provides asynchronous feedback on IOA (electronic secured app); automatic reminders to send homework or attend lessons | Consultation of feedback is mandatory to have access to the next lesson | |
| Cristancho-Lacroix et al [ | Text; videos lectures | NR | Peer support: asynchronous discussion sessions moderated by a psychologist (forum) | Relaxation training; testimonials; glossary; bank of activities to stimulate CR | |
| Chih et al [ | Text; graphic | Online questionnaires on CR and CG health status; coaching service that automatically generates graphics of health status, offer decision aids, and structures an action plan | Professional support: cancer information specialist available via an “ask and expert” button.; Clinician report: summaries of users’ health available to the clinical team on demand, from a threshold alert or two days before a clinic visit; peer support: asynchronous discussion sessions moderated by a professional facilitator (bulletin board) | IOA and interactions through supportive feedback component used to tailor content; FAQs; list of relevant Web links, articles and community services; cancer news; testimonials ; personal webpage | |
| Kim et al [ | Video lectures; PowerPoint slides | Online quizzes following the viewing of video lectures | Professional support: asynchronous service to network with health professionals (email) | List of relevant Web links | |
| Smith et al [ | Text; video of enacted support group | At-home apps given by a nurse | Professional support: two times per week, a synchronous chat session directed by a nurse for the viewing and commenting of the weekly video (Adobe connect); the nurse is also available by asynchronous communication (email); peer support: asynchronous discussion sessions (email and message board) | List of relevant Web links, instructional videos and PDF files; online library of educational information; search engine | |
aAs categorized by Barack and Klein [19].
bCG: caregiver; CR: care recipient; FAQ: frequently asked question: IOA: interactive online activities; NR: none reported.
Behavior change techniques for each category of Internet-based interventions.
| Author | Behavior change techniquesa | Caregiver outcomes (ES)b | |
| Eames et al [ | NR | NSSD in caregiver strain | |
| Pierce et al [ | NR | NSSD in depression symptoms and satisfaction with life | |
| Torkamani et al [ | Social support; stress management | NSSD in caregiver burden, occurrence of psychiatric, and/or behavioral problems, depressive symptoms, and quality of life | |
| Beauchamp et al [ | Barrier identification; instructions; modeling; social support | ↓ stress (0.5); ↑ intention to get support (0.3); ↓ caregiver strain (0.2); ↑ caregiver gain (0.2); ↓ depressive symptoms (0.2); ↓ state anxiety (0.2); ↑ self-efficacy (0.2); NSSD in the use of specific stress-reduction strategies | |
| McLaughlin et al [ | Barrier identification; instructions; modeling; prompt practice; stress management | ↑ skill application (1.01); ↑ intention to use (0.7); ↑ knowledge (0.67); NSSD in satisfaction with life | |
| Blom et al [ | Barrier identification; instructions; modeling; feedback on performance; stress management; time management | ↓ symptoms of anxiety (0.48); ↓ depressive symptoms (0.26) | |
| Cristancho-Lacroix et al [ | Information on behavior-health link and on consequences; barrier identification; instructions; prompt practice; social comparison; social support; stress management | ↑ knowledge (0.79); NSSD in perceived stress | |
| Chih et al [ | Information on behavior-health link and on consequences; barrier identification; instructions; goal setting; social support; stress management; time management | ↓ negative mood at 6 and 12 months; ↓ caregiver burden at 6 months; ↑ bonding = ↑ active coping; NSSD for preparedness, physical burden, and in levels of disruptiveness | |
| Kim et al [ | Information on behavior-health link and on consequences; instructions; feedback on performance | ↑ caregiver mastery | |
| Smith et al [ | Information on behavior-health link and on consequences; intention formation; instructions; self-monitoring of behavior; feedback on performance; prompt practice; social comparison; social support; identification to role models; stress management | ↓ depression at 11 weeks and 1 month follow-up; NSSD in sense of mastery, self-esteem, and social support | |
aAs categorized by Abraham and Michie [22].
bArrows show the direction of statistically significant differences in intervention group compared to control for outcomes measured (P<.05). ES: value of effect sizes as originally reported by the authors; NR: none reported; NSSD: not statistically significant difference.
Classification of the statistically significant outcomes by categories of Internet-based interventions and according to the Stress Process Model.a
| Outcome | Web-based education | Self-help Web-based | Human-supported Web-based therapeutic | ||||||||||
| [ | [ | [ | [ | [ | [ | [ | [ | [ | [ | ||||
| Problematic behavior | 0 | ||||||||||||
| Relationship quality | 0b | ||||||||||||
| Disruptiveness | 0 | ||||||||||||
| Caregiver gain | + | ||||||||||||
| Mastery | 0 | + | 0 | ||||||||||
| Self-esteem | 0 | ||||||||||||
| Depression | 0 | 0 | + | + | 0 | + | + | ||||||
| Anxiety | + | + | |||||||||||
| Stress | +b | 0 | |||||||||||
| Caregiver strain | + | ||||||||||||
| Caregiver burden | 0 | 0 | 0 | + | |||||||||
| Physical burden | 0 | ||||||||||||
| Self-perceived health | |||||||||||||
| Quality of life | 0 | 0 | 0 | ||||||||||
| Intention to get support | +b | ||||||||||||
| Social support | 0 | ||||||||||||
| Coping | 0 | 0b | |||||||||||
| Self-efficacy | +b | 0b | |||||||||||
| Knowledge | +b | +b | |||||||||||
| Skill application | +b | ||||||||||||
| Perceived bonding | + | ||||||||||||
a+: Statistically significant effect (P<.05) of the intervention on the measured outcome (either improving positive factors or decreasing adverse factors); 0: not statistically significant effect.
bValidation process of the measure was not reported.