The feasibility of daily monitoring in adolescents and young adults with mild intellectual disability or borderline intellectual functioning

Abstract

Despite the overall consensus about the advantages of ecological momentary assessment, there is a need for information on how this method would fit with target groups with vulnerabilities that may potentially interfere with its feasibility. In this study, the feasibility of a daily diary protocol is therefore explored for adolescents and young adults with a mild intellectual disability or borderline intellectual functioning (MID-BIF). Once per day for 60 consecutive days, 50 participants with MID-BIF (Mage = 21.4, 56% male) from either an ambulatory, residential, or juvenile detention care setting, could self-rate a set of standardized and personalized diary questions through an app. Diary answers were channeled back to care professionals throughout the 60-day diary period, to be used as feedback in the participant’s treatment. A follow-up interview was conducted to explore the method’s acceptability among participants. The mean compliance rate was 70.4% and 26% participants dropped out. Compliance rates were good for participants who received ambulatory (88.9%) or residential care (75.6%), but not for participants who were detained in the juvenile detention center (19.4%). Participants who answered diaries on a group-owned device were significantly less compliant than those who could answer diaries on their own mobile phone. Interviews revealed that participants in all care settings deemed the method acceptable. Daily monitoring is a feasible and acceptable data collection method for individuals with MID-BIF who receive ambulatory or residential care, and can provide research and practice with important insights into day-to-day behavioral patterns.

Accessibility and feasibility of experience sampling methods for mental health research with people with intellectual disability: Scoping of research and stakeholder views

“…In the other studies, experience sampling was used to investigate social and/or psychological outcomes. Compliance rates to the beeps were reported by five studies (Feller et al, 2021; Gosens et al, 2023; Hulsmans et al, 2023; Schneider et al, 2020; Wilson et al, 2020) and ranged between 34% (Wilson et al, 2020) and 71% (Gosens et al, 2023). Feller et al (2021, 2023) reported that the researchers sent personalised messages to the participants every other day to encourage them and to verify study compliance, and that the researchers were available for support throughout the experience sampling procedure.…”

“…Sixteen studies were initially screened based on the full‐text, of which six studies fit the inclusion criteria (Feller et al, 2021, 2023; Hyde et al, 2021; Schneider et al, 2020; Wilson et al, 2020). The search was updated towards the end of the scoping review, which yielded one additional study that fit the criteria (Hulsmans et al, 2023). Another eligible study was found using snowballing (Gosens et al, 2023).…”

“…Compliance to the questionnaires was reported by six studies, and ranged between 34% (Wilson et al, 2020) and 71% (Gosens et al, 2023). Two studies were specifically aimed at examining the acceptability and feasibility of experience sampling (Hulsmans et al, 2023; Wilson et al, 2020). In both studies, participants used an experience sampling application to report on mental health related outcomes, for seven consecutive days (Wilson et al, 2020) and 60 consecutive days (Hulsmans et al, 2023), and reported on their experiences during follow‐up interviews.…”

“…Two studies were specifically aimed at examining the acceptability and feasibility of experience sampling (Hulsmans et al, 2023; Wilson et al, 2020). In both studies, participants used an experience sampling application to report on mental health related outcomes, for seven consecutive days (Wilson et al, 2020) and 60 consecutive days (Hulsmans et al, 2023), and reported on their experiences during follow‐up interviews. Wilson et al (2020) mostly described participants' experiences with practical and technical difficulties, such as the comprehensibility of the questions and reasons for non‐compliance.…”

Understanding the complexity of individual developmental pathways: A primer on metaphors, models, and methods to study resilience in development

“…Studying the dynamics of these states will reveal information about the stability and interactions of the systems involved. Consequently, personalized questions may be meaningful to the patient, but difficult to interpret for an outsider, for example, in a study of the feasibility of applying personalized process monitoring methods in youth with mild intellectual disability and borderline intellectual functioning, a participant came up with the question “Did your bucket empty by smoking weed?” (Hulsmans et al, 2023). We do not exactly know what this means, but one can imagine that daily self-reports of these and other personalized questions carry unique information about the mental, emotional, and physical states of this particular participant.…”