Web-based health interventions for family caregivers of elderly individuals: A Scoping Review

BACKGROUND For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. OBJECTIVES To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. METHODS We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. RESULTS Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of caregiver burden were consistently observed. CONCLUSIONS Caregivers value interactive interventions that are tailored to their unique needs and the illness context. However, usage of the interventions was sporadic and declined over time, indicating that future interventions should address stage-specific needs across the caregiving trajectory. A systematic review has the potential to be conducted given the consistency in caregiver burden and depression as outcomes.

[1]  D. gallagher-Thompson,et al.  Exploring the effectiveness of an Internet-based program for reducing caregiver distress using the iCare Stress Management e-Training Program , 2013, Aging & mental health.

[2]  Gunther Eysenbach,et al.  Theorizing the health service usage behavior of family caregivers: A qualitative study of an internet-based intervention , 2011, Int. J. Medical Informatics.

[3]  K. Hepburn,et al.  Internet-Based Program for Dementia Caregivers , 2010, American journal of Alzheimer's disease and other dementias.

[4]  K. Milisen,et al.  Shifting care from hospital to home: a qualitative study , 2015 .

[5]  Whitney L. Mills,et al.  Technology-Driven Interventions for Caregivers of Persons With Dementia , 2013, American journal of Alzheimer's disease and other dementias.

[6]  Bret R. Shaw,et al.  Creating a Bond Between Caregivers Online: Effect on Caregivers’ Coping Strategies , 2012, Journal of health communication.

[7]  J. Seeley,et al.  Worksite-based internet multimedia program for family caregivers of persons with dementia. , 2005, The Gerontologist.

[8]  F. Verhey,et al.  A systematic review of Internet‐based supportive interventions for caregivers of patients with dementia , 2014, International journal of geriatric psychiatry.

[9]  V. Steiner,et al.  Building a Web of Support for Caregivers of Persons with Stroke , 2002, Topics in stroke rehabilitation.

[10]  Elsa Marziali,et al.  Client-Centred Concepts in a Personalized E-Mail Support Intervention Designed for Chinese Caregivers of Family Members with Dementia: A Qualitative Study: , 2010 .

[11]  A. Rajić,et al.  A scoping review of scoping reviews: advancing the approach and enhancing the consistency , 2014, Research synthesis methods.

[12]  I. Shiue,et al.  Quality of life in caregivers with and without chronic disease: Welsh Health Survey, 2013 , 2016, Journal of public health.

[13]  L. Fratiglioni,et al.  Aging with multimorbidity: A systematic review of the literature , 2011, Ageing Research Reviews.

[14]  E. Marziali Virtual support groups for family caregivers of persons with dementia , 2005 .

[15]  Annemiek J. Linn,et al.  Taking online computer-tailoring forward: The potential of tailoring the message frame and delivery mode of online health behaviour change interventions , 2015 .

[16]  R. Bassett,et al.  A critical participatory and collaborative method for scoping the literature , 2013 .

[17]  Anneke L. Francke,et al.  Effects of eHealth for patients and informal caregivers confronted with cancer: A meta-review , 2016, Int. J. Medical Informatics.

[18]  F. Griffiths,et al.  Why Are Health Care Interventions Delivered Over the Internet? A Systematic Review of the Published Literature , 2006, Journal of medical Internet research.

[19]  Elsa Marziali,et al.  Caring for others: Internet video-conferencing group intervention for family caregivers of older adults with neurodegenerative disease. , 2006, The Gerontologist.

[20]  C. Lai,et al.  Online and onsite training for family caregivers of people with dementia: results from a pilot study , 2013, International journal of geriatric psychiatry.

[21]  L. Beatty,et al.  Feasibility study of a self-guided cognitive behaviour therapy internet intervention for cancer carers. , 2013, Australian journal of primary health.

[22]  S. Phillips,et al.  A Systematic Review of Caregiver Burden following Stroke , 2009, International journal of stroke : official journal of the International Stroke Society.

[23]  J. Powell,et al.  Primary care Health related virtual communities and electronic support groups : systematic review of the effects of online peer to peer interactions , 2004 .

[24]  Richard Schulz,et al.  Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up. , 2003, Psychology and aging.

[25]  L. Radloff The CES-D Scale , 1977 .

[26]  Elsa Marziali,et al.  Caring for Others: Internet Health Care Support Intervention for Family Caregivers of Persons with Alzheimer's, Stroke, or Parkinson's Disease , 2005 .

[27]  S. Moore,et al.  The Effects of a Special Computer Network on Caregivers of Persons with Alzheimer's Disease , 1995, Nursing research.

[28]  Ming-Yuan Chih,et al.  CHESS improves cancer caregivers' burden and mood: results of an eHealth RCT. , 2014, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[29]  Anne Margriet Pot,et al.  Acceptability of a guided self-help Internet intervention for family caregivers: mastery over dementia , 2015, International Psychogeriatrics.

[30]  Paul Duberstein,et al.  How effective are interventions with caregivers? An updated meta-analysis. , 2002, The Gerontologist.

[31]  Charles Safran,et al.  Acceptance and use of health information technology by community-dwelling elders , 2014, Int. J. Medical Informatics.

[32]  David H Gustafson,et al.  E-health research and patient-centered care examining theory, methods, and application. , 2010, American journal of preventive medicine.

[33]  Stefan Kirn,et al.  Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal , 2016, JMIR research protocols.

[34]  John Powell,et al.  A systematic review of networked technologies supporting carers of people with dementia , 2008, Journal of telemedicine and telecare.

[35]  Lori L. DuBenske,et al.  The value of theory for enhancing and understanding e-health interventions. , 2010, American journal of preventive medicine.

[36]  Teresa M. L. Chiu,et al.  Internet-Based Caregiver Support for Chinese Canadians Taking Care of a Family Member with Alzheimer Disease and Related Dementia* , 2009, Canadian Journal on Aging / La Revue canadienne du vieillissement.

[37]  Rose-Marie Dröes,et al.  Evaluation of DEM-DISC, customized e-advice on health and social support services for informal carers and case managers of people with dementia; a cluster randomized trial , 2015, International Psychogeriatrics.

[38]  T. Thompson,et al.  Internet‐based Support for Rural Caregivers of Persons with Stroke Shows Promise , 2004, Rehabilitation nursing : the official journal of the Association of Rehabilitation Nurses.

[39]  H. Arksey,et al.  Scoping studies: towards a methodological framework , 2005 .

[40]  E. Marziali,et al.  Clinical Practice Standards and Ethical Issues Applied to a Virtual Group Intervention for Spousal Caregivers of People with Alzheimer's , 2007, Social work in health care.

[41]  S. Khuder,et al.  The effect of a Web-based stroke intervention on carers' well-being and survivors' use of healthcare services , 2009, Disability and rehabilitation.

[42]  P. Palmieri,et al.  Reducing depression in stroke survivors and their informal caregivers: a randomized clinical trial of a Web-based intervention. , 2012, Rehabilitation psychology.

[43]  J. Millán-Calenti,et al.  UnderstAID, an ICT Platform to Help Informal Caregivers of People with Dementia: A Pilot Randomized Controlled Study , 2016, BioMed research international.

[44]  Victoria Steiner,et al.  Usage and Design Evaluation by Family Caregivers of a Stroke Intervention Web Site , 2013, The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses.

[45]  V. Steiner,et al.  In-home Online Support for Caregivers of Survivors of Stroke: A Feasibility Study , 2002, Computers, informatics, nursing : CIN.

[46]  E. Hanson,et al.  Supporting frail older people and their family carers at home using information and communication technology: cost analysis. , 2005, Journal of advanced nursing.

[47]  M. Gignac,et al.  Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships , 2015, Clinical rehabilitation.

[48]  Mary-Frances O'Connor,et al.  Virtually supportive: a feasibility pilot study of an online support group for dementia caregivers in a 3D virtual environment. , 2014, Journal of aging studies.

[49]  D. Kasprzyk,et al.  Theory of reasoned action, theory of planned behavior, and the integrated behavioral model. , 2008 .

[50]  Chris Barker,et al.  Effectiveness of computer-mediated interventions for informal carers of people with dementia—a systematic review , 2014, International Psychogeriatrics.

[51]  Pim Cuijpers,et al.  Effectiveness of an Internet Intervention for Family Caregivers of People with Dementia: Results of a Randomized Controlled Trial , 2015, PloS one.

[52]  Steven A. Brown,et al.  Use of a multiparty web based videoconference support group for family caregivers: Innovative practice , 2015, Dementia.

[53]  Sally C Morton,et al.  A meta-analysis of interventions to improve care for chronic illnesses. , 2005, The American journal of managed care.

[54]  C. Nugent,et al.  Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom , 2015, Journal of medical Internet research.

[55]  Victoria Steiner,et al.  An E-rehabilitation Team Helps Caregivers Deal with Stroke , 2004 .

[56]  Marcus J Hollander,et al.  Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly. , 2009, Healthcare quarterly.

[57]  Gunther Eysenbach,et al.  Stages of use: consideration, initiation, utilization, and outcomes of an internet-mediated intervention , 2010, BMC Medical Informatics Decis. Mak..

[58]  F. Verhey,et al.  Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study , 2016, JMIR research protocols.

[59]  S. Glynn,et al.  The use of Internet technology for psychoeducation and support with dementia caregivers. , 2012, Psychological services.

[60]  Patricia Flatley Brennan,et al.  Alzheimer's Disease Caregivers' Uses of a Computer Network, , 1992, Western journal of nursing research.

[61]  G J Acton,et al.  Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis. , 2001, Research in nursing & health.

[62]  Vikas Mittal,et al.  Educating the families of nursing home residents: a pilot study using a computer-based system. , 2003, Journal of the American Medical Directors Association.

[63]  M. Gignac,et al.  "Timing It Right": a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. , 2008, Patient education and counseling.

[64]  Bret R. Shaw,et al.  Web-Based Cancer Communication and Decision Making Systems: Connecting Patients, Caregivers, and Clinicians for Improved Health Outcomes , 2010, Medical decision making : an international journal of the Society for Medical Decision Making.

[65]  B. Given,et al.  Cancer Carepartners: Improving patients' symptom management by engaging informal caregivers , 2011, BMC palliative care.

[66]  Lennart Magnusson,et al.  A literature review study of Information and Communication Technology as a support for frail older people living at home and their family carers , 2004 .

[67]  Dharma E. Cortés,et al.  Use of an Online Community to Provide Support to Caregivers of People With Dementia , 2014, Journal of gerontological social work.

[68]  E. Hanson,et al.  A Web-Based Psychosocial Intervention for Family Caregivers of Older People: Results from a Mixed-Methods Study in Three European Countries , 2016, JMIR research protocols.

[69]  J. Epstein,et al.  The Sandwich Generation Diner: Development of a Web-Based Health Intervention for Intergenerational Caregivers , 2016, JMIR research protocols.

[70]  M. Mcclendon,et al.  Relationships Among Caregivers' Demographic Characteristics, Social Support Ratings, and Expectations of Computer-Mediated Support Groups , 2007 .

[71]  Ellen A. Skinner,et al.  Perceived Control, Motivation, & Coping , 1995 .

[72]  Candice M. Daniel,et al.  Supporting Caregivers of Rural Veterans Electronically (SCORE) , 2017, The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association.

[73]  Rose-Marie Dröes,et al.  User evaluation of the DEMentia-specific Digital Interactive Social Chart (DEM-DISC). A pilot study among informal carers on its impact, user friendliness and, usefulness , 2010, Aging & mental health.

[74]  Jeffrey S. Loomis,et al.  Online support and education for dementia caregivers: overview, utilization, and initial program evaluation. , 2004, Telemedicine journal and e-health : the official journal of the American Telemedicine Association.

[75]  R. Sudore,et al.  Information-Seeking at a Caregiving Website: A Qualitative Analysis , 2010, Journal of medical Internet research.

[76]  S. Folkman,et al.  Stress, appraisal, and coping , 1974 .

[77]  Elsa Marziali,et al.  Dementia Caregivers’ Responses to 2 Internet-Based Intervention Programs , 2011, American journal of Alzheimer's disease and other dementias.

[78]  Donna M. Zulman,et al.  Adapting an in‐person patient–caregiver communication intervention to a tailored web‐based format , 2012, Psycho-oncology.

[79]  Stephen Peckham,et al.  Asking the right questions: Scoping studies in the commissioning of research on the organisation and delivery of health services , 2008, Health research policy and systems.

[80]  D. Milne,et al.  The role of the Internet in supporting and informing carers of people with cancer: a literature review , 2010, Supportive Care in Cancer.

[81]  E. Marziali Developing Evidence for an Internet-Based Psychotherapeutic Group Intervention , 2006 .

[82]  Jeffrey S. Loomis,et al.  Alzheimer's Caregiver Support Online: lessons learned, initial findings and future directions. , 2003, NeuroRehabilitation.

[83]  Anne-Sophie Rigaud,et al.  A Web-Based Psychoeducational Program for Informal Caregivers of Patients With Alzheimer’s Disease: A Pilot Randomized Controlled Trial , 2015, Journal of medical Internet research.

[84]  E. Marziali,et al.  Internet-Based Clinical Services: Virtual Support Groups for Family Caregivers , 2006 .

[85]  P. Griffiths,et al.  Development and Implementation of Tele-Savvy for Dementia Caregivers: A Department of Veterans Affairs Clinical Demonstration Project. , 2016, The Gerontologist.

[86]  Janusz Kaczorowski,et al.  Methods, strategies and technologies used to conduct a scoping literature review of collaboration between primary care and public health , 2012, Primary Health Care Research & Development.

[87]  M. Petticrew,et al.  Systematic Reviews in the Social Sciences: A Practical Guide , 2005 .

[88]  S. Noar,et al.  A Meta-Analysis of Web-Delivered Tailored Health Behavior Change Interventions , 2013, Journal of health communication.