In-person, telephone, web-based supplement (with telephone technology, local resources, online discussion groups, family conferences)
Caregivers only Family caregivers living with older adults with Alzheimer’s
(i) CES-D (ii) RMBPC (iii) Researcher-Developed Likert Scaled Item on Satisfaction with Social Support
Length: 12 months, with assessments at 6, 12, & 18 months. Intervention (SET) group 1: () received structural ecosystems therapy, a family intervention which identifies and targets the specific problems caregivers are experiencing, the range of usable resources available to the caregiver and their formal support systems, the range of community resources available and accessible to the family, and the capacity of the caregivers and their family to collaborate in the caregiving effort. Intervention (SET+CTIS) group 2: () additionally received a computer-telephone integrated system designed to augment the therapeutic intervention by facilitating linkages of the caregivers with their family, the therapist, and supportive resources outside of the home. Attention control: () participants received minimal support through nondirective, noninformative telephone calls on a similar schedule and written educational materials.
The SET alone did not have a significant effect on depression for most caregivers, except for Cuban American wives. SET+CTIS was effective in lowering caregiver depression at 6 and 18 months. The MSC showed moderate decreases for white caregiver spouses but was associated with higher depression scores for Cuban American spouses. Cuban American husbands tended to show reductions in depression for SET+CTIS but increases in depression for the other two groups.
Intervention group only: asynchronous (interactive web-based tailored educational modules), choice of phone or email guidance from psychologist and psychotherapist
Caregivers only Caregivers of persons with subclinical & clinical anorexia nervosa
(i) HADS (ii) Experience of Caregiving Inventory (iii) Level of Expressed Emotion Scale (iv) Accommodation and Enabling Scale for Eating Disorders (v) The Eating Disorder Symptom Impact Scale (vi) Service Utilization Questionnaire
Length: 4 months, with a 2-month follow-up postintervention. Intervention: () asynchronous web-based access to a multimedia, online program over 4 months which included 8 interactive web-based tailored modules based on systemic, cognitive behavioral, and motivational interviewing frameworks. Workbooks and other materials were made available for download. Moderated message boards were also available. Weekly guidance from a therapist was available up to 20 minutes a week by phone or email. These were tailored to each caregiver’s needs with support and encouragement or referrals to specific parts of the program. Usual care/waitlist: () access to usual eating disorder resources (e.g., telephone hotline services [support only, no referrals or advice given, not necessarily the same person each time a person calls in], email support services, support groups, and moderated message board and text messaging). Provided access to the intervention after the study.
The intervention group showed more reduction in reported anxiety than the usual care group. The groups did not show significant differences in change on the other five measures.
Internet or touch screen telehealth device connected through a telephone line (for subjects unfamiliar with Internet), versus telephone only
Caregivers only Family caregivers of veterans with dementia or a cognitive disorder
(i) ZBI (ii) MARWIT (sacrifice and burden, heartfelt sadness and longing, & worry and isolation subscales) (iii) PHQ (iv) 2-items (family caregiving burden causing family conflict & hardship) (v) Desire to Institutionalize Scale
Length: 4 to 6 months. Description: caregivers were stratified into 2 cohorts based upon use () or nonuse () of the Internet, then randomized. Intervention: () electronic content (i.e., video vignettes, written information, brief assessments) on dementia progression, caregiving skills, health topics, and caregiver health were accessed 3 days per week with care manager oversight and follow-up electronically. Comparison: () printed educational materials and a DVD covering content like that introduced electronically were provided, in addition to monthly telephone calls from a care manager for support.
Among home Internet users, receiving the Internet plus case management intervention predicted a decrease in reported feelings of isolation, compared to receiving the telephone only intervention. Among non-Internet users, receiving telehealth and case management predicted a decrease in reported family hardship associated with caregiving, compared to those receiving the telephone only intervention.
Telephone; a computer-mediated system using interactive voice response (IVR) with a telephone interface
Caregivers only Male and female family caregivers of older adults with Alzheimer’s
(i) RMBPC (ii) CES-D (iii) SAI
Length: 12 months, with a 6-month follow-up. Intervention: () received a computer-mediated system using interactive voice response (IVR) with a telephone interface. When caregivers called, the IVR queried about problem behaviors and responded with targeted information. Study personnel were alerted when a caregiver reported continuing problem behaviors and increasing stress levels during any 3-week period. The system also provided voice-mail linkage to experts in Alzheimer’s and related dementias, a voice-mail telephone support group, and a distraction call for care recipients. Usual care: () standard care and educational materials.
No main effects were found on any measure. In post hoc analyses, among caregivers who reported low- to mid-level mastery at baseline (), those in the intervention group showed a decrease in bother, depression and anxiety relative to the comparison group.
Length: biweekly contacts for the duration of hospice stay (average contacts: ;); caregiver follow-up interview 30 days after death of care recipient. Intervention: () participants connected with hospice staff using telephone or online videoconferencing to discuss the care recipients’ condition, identify concerns and questions, and discuss plan of care. Usual care: () standard care.
The intervention group reported belief that the care recipient’s pain could be managed and perceived that the care recipient’s pain was better managed versus the control group. As caregiver pain management perceptions improved, caregiver anxiety significantly decreased.
Caregivers only Informal caregivers living outside the home of persons with heart failure
(i) CSI (ii) CES-D (10-item) (iii) Researcher-Developed Items regarding Time Spent Helping the Care Recipient, Involved in Transportation, and Assisting with Medications
Length: 12 months, with 6- and 12-month follow-up. Intervention: () participants received weekly automated self-care support telephone calls with notifications about problems sent to clinicians, plus email summaries and suggestions for self-care assistance automatically sent to caregivers. Comparison: () same treatment minus the emailed summaries and suggestions for caregivers.
Caregivers in the intervention group reported significantly less caregiving strain than those in the control at 6 and 12 months. This effect plus improvements in depressive symptoms were noted in caregivers reporting more burden at baseline. Those in the intervention group who spent the most time providing self-care support at baseline had significant decreases at both follow-ups. More caregivers increased their involvement in medical visits and medication adherence.
Length: 5-months, with a 6-month follow-up. Intervention: () self-guided web-based caregiving and TBI-specific online modules, plus concurrent biweekly telephone calls to discuss problems and solutions. Modules were not presented in a specific order, rather caregivers were directed to relevant modules during telephone calls as indicated by their answers to a brief interview at the onset of the call. Usual care: () standard care.
Caregivers in the intervention group showed significantly higher quality of life and emotional well-being. They also showed significantly more active coping strategies and less emotional venting coping styles at follow-up. Caregivers also tended to report more support from others, feeling more competent at obtaining information from medical professionals, and taking care of themselves than usual care.
Caregiver-care recipient dyads Family caregivers of persons with advanced cancer
(i) CES-D (ii) Caregiver Quality of Life Index-Cancer Scale
Length: 6 months. Intervention: ( dyads) access to a web site with written and audiovisual self-management strategies, a bulletin board, and other resources; visits with a care coordinator every 2 months during a physician visit; and telephone follow-up every 2 weeks. Participants also received visits from a care coordinator. Usual care: ( dyads) standard care.
Caregiver stress and depression decreased significantly at 6 months for those in the intervention group.
Telephone, videos (intervention), mailed information booklets (comparison)
Caregivers only Women caring for older adults with neurocognitive disorders
(i) RMBC (ii) BDI II (iii) Negative Affect Scale (iv) MAACL-R (anxiety & hostility subscales) (v) Caregiving Self-Efficacy-Revised (obtaining respite & responding to disruptive behaviors subscales)
Length: 14 weeks; follow-up assessments conducted by interviewers at preintervention, postintervention, and 6 months. Intervention: () behavioral coaching using online video instructional materials, workbook, and 12 telephone coaching sessions (10 weekly, last 2 biweekly) in behavioral management, pleasant events scheduling, and relaxation. Attention control: () basic education guide and telephone support in 7 bimonthly calls.
Depressive symptoms, upset following disruptive behaviors, and negative mood states were statistically lower in the intervention group than in the comparison group posttreatment. Reliable change index analyses for BDI II scores favored the intervention. Caregiving self-efficacy scores for obtaining respite and for managing patient behavioral disturbances were significantly higher.
Length: 5 weeks, with follow-up 4 1/2 months postintervention. Intervention: () online video-based modules with coping skills training related to dementia caregiving, with an accompanying workbook, and 5 weekly telephone coaching sessions. Wait list control: () received the intervention following the study.
Outcomes for the intervention and wait list control groups significantly differed on depression, perceived stress, and blood pressure. Differences in the predicted direction were sustained through follow-up assessments at 5 months postintervention, but interpretability of these findings is limited by baseline differences in some variables.
Study reported significant improvement in at least one target outcome in the intervention group as compared to the control/comparison group. MARWIT: Marwit-Meuser Caregiver Grief Inventory-Short Form; CSI: Caregiver Strain Index; CQoLI-R: Caregiver Quality of Life Index-Revised; GAD-7: Generalized Anxiety Dixorder-7; TBI: traumatic brain injury; BSI: Brief Symptom Inventory; PART-O: Participation Assessment with Recombined Tools-Objective; RMBC: Revised Memory & Behavior Problems Checklist; BDI II: Beck Depression Inventory II; MAACL-R: Multiple Affect Adjective Check List-Revised; ZBI: Zarit Burden Interview; SAI: State Anxiety Inventory; PHQ: Patient Health Questionnaire; BCOS: Bakas Caregiving Outcomes Scale; HADS: Hospital Anxiety and Depression Scale; RMBPC: Revised Memory and Behavioral Problem Checklist.
