Introduction A demand for informal care exists worldwide. Lithuania presents an interesting case example where the need for the informal care is increasing, but relatively little research has been conducted documenting caregivers experiences and needs.

Objectives The main objective of this study was to investigate Lithuanian informal caregiver characteristics, support needs and burden. In addition, the impact of the COVID-19 on the caregivers and care receivers well-being was investigated.

Methods The study was conducted online between May and September 2020. Informal caregivers and individuals with informal caregiving experiences were invited to participate in the survey. The survey questionnaire comprised 38 multiple-choice items including participant demographic characteristics, availability of the support, support needs, well-being and the impact of the COVID-19 pandemic. In addition, caregiver burden was assessed with the 24-item Caregiver Burden Inventory (CBI).

Results A total of 226 individuals completed the survey. Most of the participants were women (87.6%). Almost half of the participants (48.7%) were not receiving any support, and a total of 73.9% expressed a need to receive more professional support. Participants were found to experience high burden on the CBI (M=50.21, SD=15.63). Women were found to be significantly more burdened than men (p=0.011). Even though many participants experienced psychological problems (55.8%), only 2.2% were receiving any psychological support. Finally, majority of the participants did not experience any changes in their own (63.7%) or the well-being of their care receiver (68.1%) due to the COVID-19 pandemic.

Conclusion Most of the participants were identified as intensive caregivers experiencing a high burden. A majority did not experience changes in their well-being due to COVID-19. We propose several recommendations for increasing accessibility and availability of support for informal caregivers in Lithuania based on the study findings.

Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.

Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.

Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.

Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention’s platform and the choice of content.

Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.

Trial Registration: ClinicalTrials.gov NCT04052724; https://clinicaltrials.gov/ct2/show/NCT04052724

Background

Informal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT.

Objective

The main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life.

Methods

Following a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach.

Results

Four themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite).

Conclusions

Most of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.

Background: Informal caregivers are individuals who provide care for ill, frail, or otherwise dependent family members, siblings, or friends. Due to the caregiving demands, informal caregivers are known to experience negative mental health symptoms, such as stress or anxiety. Interventions based on Internet-based Cognitive Behavioral Therapy (ICBT) principles have been previously found to be effective for different populations and could also be considered as a plausible support option for informal caregivers. However, findings regarding effectiveness alone might not be sufficient for informing about the overall feasibility of the intervention.

Objective: The aim of this process evaluation study was to evaluate the feasibility of a previously developed ICBT intervention for informal caregivers in Lithuania. More specifically, we evaluated the suitability of the intervention in relation to its content and delivery mode.

Methods: Two studies were conducted. Study 1 consisted of participant evaluations of an 8-week, 8-module long therapist supported ICBT intervention. Evaluations for the Study 1 were retrieved from previously unused data, obtained from pilot testing of the intervention in which 63 informal caregivers took part. The evaluations contained of qualitative data (participant comments), as well as quantitative data (evaluations of each of the sessions). The Study 2 was an online stakeholder focus-group discussion conducted via Zoom. Eight stakeholders took part in the discussion, among whom there were social workers, medical professionals as well as individuals with caregiving experience themselves. Data were analyzed using descriptive statistics, thematic analysis, and data coding.

Results: Results of the Study 1 showed that most of the pilot randomized controlled trial participants evaluated content and format of the intervention positively. These results were complemented by the findings in the Study 2, in which stakeholders evaluated the intervention as suitable and promising. In addition, stakeholders made certain suggestions for improving the intervention’s usability for the informal caregivers. This included improving the instructions, providing with more guidance, and considering personalization options.

Conclusion: The process evaluation helped to evaluate the feasibility of the ICBT intervention for informal caregivers in Lithuania from the two perspectives: users and stakeholders. Our findings suggest that the intervention is suitable for the target population.