JMIR Publications

ABSTRACT

Background:

Counseling in family dementia care aims to support caregivers in mastering challenges. The use of information and communication technologies (ICT) to administer counseling can improve accessibility. Evidence syntheses report inconsistent findings on the effectiveness of technology-based counseling. There is a considerable heterogeneity in outcomes assessed in clinical trials, and approaches to develop and evaluate interventions are not guided by theory in most cases.

Objective:

To develop an initial program theory of a technology-assisted counseling intervention for family dementia caregivers and to create the data basis for the consensus process of a core outcome set.

Methods:

We integrated the methodological strands for the development of a program theory and a core outcome set in an innovative way. A scoping review was conducted to collect data on characteristics and theoretical foundations of technology-mediated counseling interventions as well as outcomes of clinical studies. We explored the lived experience of relevant interest-holders and conducted semi-structured interviews applying a phenomenological approach to data analysis. Synthesis of findings was performed by developing a logic model and formulating an initial program theory.

Results:

We included 69 records reporting on 34 interventions. Designs and other study characteristics vary and interventions are heterogeneous in terms of components and ICT used for delivering counseling. We conducted interviews with 15 family caregivers and 12 counselors. The themes Being affected; Feeling insecure and helpless in the face of the healthcare system; and Search for information and communicative exchange illustrate the caregivers’ lifeworld perception. Themes identified in counselors’ interviews comprise Work attitude and standards; Unpredictability; Expectations; Working conditions; Organizational influence; and Tools: techniques and networking. The constitutive pattern of Having/being somebody to count on was incorporated into the program theory. In the theory of change, we describe the way to a sustainable supportive cooperation between caregivers and counselors ensuring ongoing support throughout the caregiving process. We explicate the effects of the technology-assisted counseling intervention such as improved knowledge, attitude, and interaction, as well as stability and safety of care in the outcome chain. The theory of action comprises the inputs, activities, and outputs of the intervention. The graphical synthesis of findings is presented in the logic model.

Conclusions:

To effectively develop, implement, and evaluate technology-assisted counseling in family dementia care, a theory-led approach is essential. A carefully modeled intervention comprising diverse ICT and the opportunity for in-person counseling may help to overcome disparities in access to healthcare and improve accessibility to counseling. A supportive working environment for counselors, in which artificial intelligence is used to reduce time spent on documentation and administrative tasks, may help mitigate the effects of the growing shortage of skilled professionals. Clinical Trial: ProCOS was registered with the Core Outcome Measures in Effectiveness Trials (COMET) Initiative (https://www.comet-initiative.org/Studies/Details/2884).