"Let's chat" : use of mHealth in supporting family caregivers to persons with dementia

<p dir="ltr"><b>Background</b>: The ageing population and rise of persons with dementia (PWD) have increased the need to support family caregivers (FCs), who experience challenges such as caregiver stress and depression due to daily caregiving demands. Mobile applications (apps) offer innovative solutions for community- based social care professionals to provide support to FCs to PWD living at home. However, limited mobile app-based interventions currently target FCs to PWD living at home. To address this gap, a tailor-made mobile app named STAV (STöd till AnhörigVårdare: Support to family caregivers) was developed.</p><p dir="ltr"><b>Aim</b>: The overall aim of this doctoral project is to explore experiences and perspectives of FCs to PWD and social care professionals on community-based support in a Swedish context. The doctoral project aims to examine the provision of support through a tailor-made mobile application used as an intervention tool.</p><p dir="ltr"><b>Methods</b>: Studies I-III were part of an 8-week pilot intervention project in which FCs to PWD received support from healthcare professionals (Study I) and community-based social care professionals (Studies II-III) through the intervention tool STAV. Data for Study I-II were collected post-intervention. Study I used a qualitative explorative design in the feasibility phase, with collected data through semi-structured interviews with FCs of PWD living at home. The data was analysed deductively, guided by qualitative content analysis. Study II used a qualitative descriptive design. Data were collected through semi-structured interviews with social care professionals and FCs to PWD living at home. The data was analysed inductively, guided by thematic analysis.</p><p dir="ltr">Study III employed an explanatory sequential mixed-methods design, integrating quantitative and qualitative data. Quantitative data were collected pre- and post-intervention through self-administered questionnaires. Qualitative data were collected from the logged chat conversations between the FCs and the social care professionals during the intervention period. Socio-demographic factors were described using descriptive statistics. Paired t-test and a sign test were used to test the statistical significance of mean differences in caregiver stress (primary outcome), and median differences in depressive symptoms (secondary outcome), pre- and post-intervention. FCs were divided into three groups in terms of changes in caregiver stress scores between pre- and post- intervention. Generalized linear models (GLM) were used to determine the association of participation in the intervention on caregiver stress and depressive symptoms controlling for age, gender and relationship to the PWD. Summative content analysis guided the analysis of the logged chat data to identify the type of support provided and received. Changes in caregiver stress were integrated with the chat data to identify patterns in the types of support received.</p><p dir="ltr">Study IV used a qualitative explorative design, with data collected through semi-structured interviews with social care professionals. The data was analysed using Systematic Text Condensation.</p><p dir="ltr"><b>Findings</b>: In Study I, 12 FCs, seven women, and five men participated in the interviews. Eleven were spouses, and one was an adult daughter of the PWD they cared for. The findings showed how FCs engaged with the mobile app STAV and other actors in their service network through different levels of value co-creation activities.</p><p dir="ltr">In Study II, 11 social care professionals and 19 FCs, 16 women and 3 men, participated in the interviews. Most of the FCs were spouses to PWD (n=13), while two were cohabiting partners, three were adult children, and one was a close friend. The FCs had an average age of 72, ranging from 53 to 85 years. The experiences of social care professionals and FCs in providing and receiving support via the mobile app STAV were reflected through three overarching themes: Accessibility to support - Bridging the gap, Engaging from a distance, and Limitations of the support.</p><p dir="ltr">In study III, a total of 46 FCs to PWD were enrolled in the intervention. However, 11 did not complete post-intervention assessments and were lost to follow-up. Consequently, the final analysis included 35 FCs who completed both pre- and post-intervention evaluations. The FCs had a mean age of 69.4, ranging from 42 to 85 years. Most were women (80%) and partners, either spouses or cohabitating partners (68.6%) and most were living together with the PWD (74.3%). Paired sample t-test showed that the mean score of FCs' caregiver stress was slightly higher post-intervention, 24.1 (9.3), compared to pre- intervention 23.9 (9.2), although this difference was not statistically significant (p=0.87). The median score of FCs' depressive symptoms declined between pre-intervention 6 and post-intervention 5, but this result was also not statistically significant (p=0.57). GLM analyses showed no association between participation in the intervention on caregiver stress after adjusting for age, gender, and relationship to the PWD. However, the mixed-methods analysis indicated subgroup differences, suggesting that frequently provided, tailored support by social care professionals delivered through a mobile app could potentially reduce caregiver stress among FCs to PWD living at home.</p><p dir="ltr">In Study IV, the social care professionals' (n=13) perspectives on challenges and possibilities in offering support to FCs to community-dwelling PWD of non- European background were reflected through eight themes: (i) Mistrust in the system, (ii) Hard-to-Reach group, (iii) Misalignment of expectations and reality, (iv) Stigmatised situations, (v) Timely contact, (vi) Communicating with the younger generation, (vii) Promoting and adapting support, and (viii) Coordination of services.</p><p dir="ltr"><b>Conclusions</b>: The intervention tool STAV used in this thesis can serve as a complement to traditional support channels by offering a flexible and essential resource for community-based social care professionals to deliver remote, time-efficient, evidence-based and tailored support to FCs to PWD living at home. Findings suggest that mobile app-based support can lower the threshold for FCs to access support and provide a reassuring presence, even at lower levels of engagement. Additionally, frequent and tailored support may potentially reduce caregiver stress among FCs to PWD living at home.</p><p dir="ltr">The findings of this thesis may help inform the development and implementation of support services and mHealth interventions aimed at addressing the complex needs of FCs to PWD living at home. However, to ensure broad reach and inclusivity, further adaptations and tailoring are required to address the diverse needs of FCs to PWD, especially to deliver culturally sensitive support for FCs from immigrant backgrounds, who are often identified as hard-to-reach.</p><h3>List of scientific papers</h3><p dir="ltr">I. <b>Kagwa, A.</b><b>S.</b>, Konradsen, H. & Kabir, Z.N. Value co-creation with family caregivers to people with dementia through a tailor-made mHealth application: a qualitative study. BMC Health Serv Res. 22, 1362 (2022). <a href="https://doi.org/10.1186/s12913-022-08704-w" rel="noreferrer" target="_blank">https://doi.org/10.1186/s12913-022-08704-w</a></p><p dir="ltr">II. <b>Kagwa, A.</b><b>S.</b>, Dorell, Å., Konradsen, H., Vikström, S. & Kabir, Z.N. Providing and receiving support through a tailor-made mobile app: a qualitative study on experience of professionals and family caregivers to persons with dementia. BMC Geriatr. 24, 554 (2024). <a href="https://doi.org/10.1186/s12877-024-05151-6" rel="noreferrer" target="_blank">https://doi.org/10.1186/s12877-024-05151-6</a></p><p dir="ltr">III. <b>Kagwa AS</b>, Longhini J, Islam MN, Vikström S, Dorell Å, Konradsen H, Kabir ZN. Professional Support Through a Tailor-Made Mobile App to Reduce Stress and Depressive Symptoms Among Family Caregivers of People With Dementia: Mixed Methods Pilot Study. JMIR Form Res. 2025;9:e75113. <a href="https://doi.org/10.2196/75113 " rel="noreferrer" target="_blank">https://doi.org/10.2196/75113</a></p><p dir="ltr">IV. <b>Kagwa, A.</b><b>S.</b>, Tiitinen Mekhail, K., Craftman, Å., Konradsen, H., Kabir, Z.N. & Tyrrell, M. Social care professionals' perspectives on challenges and possibilities in offering support to family caregivers to persons with dementia of non-European background: A qualitative study. [Submitted]</p>