Improving empathy and self-efficacy in caregivers of persons with intellectual disabilities, using m-learning (HiSense APP-ID): study protocol for a randomized controlled trial

A secure attachment with one or more caregivers is one of the most important factors in cognitive and emotional development. Persons with intellectual disability (ID) may remain dependent on a caregiver for various aspects of their lives, often including coping with emotions and stress. It is therefore crucial that parents and other caregivers of persons with ID are aware of their responsibilities in establishing a secure relationship and that they know how to support the emotional development of their loved one or client.

Children and their parents often form an attachment relationship, but other family members also can be involved, as can a caregiver at daycare or a teacher at school [1, 2]. The attachment figure alternately serves as a secure base and a safe haven: by functioning as a secure base, the attachment figure encourages a child to explore the world within safe boundaries. By providing a safe haven, the attachment figure gives the child assurance of available comfort in moments of distress [3‐5]. A well-balanced presentation of these two aspects will support the emotional development of the child. Furthermore, the quality of an attachment relationship greatly depends on a caregiver’s sensitivity for the communicative signals of the other person. Equally important is an adequate response to these signals [4‐6]. Depending on the sensitivity and responsiveness of the attachment figure, the child develops a general internal working model regarding confidence in the caregivers [7]. A child with secure attachments feels safe and confident in the interaction with others [8], and conversely, insecure attachment may lead to problematic coping strategies in children [9]. Parents and other caretakers are essential in teaching the child to apply appropriate coping strategies. Children with insecure attachment tend to display problematic behavior within social relationships and in dealing with stressful situations in daily life [10, 11].

Persons with ID may continue to need this type of guidance throughout their lives. Difficulties in information processing can present an obstacle to understanding social situations. Consequently, persons with ID are more likely to encounter situations they find overwhelming and stressful and in which they need attachment figures to assist in emotion regulation [9]. At the same time, parents and other caregivers may experience more difficulties in establishing a secure relationship with a child or adult with ID than with a typically developing person [12]. Janssen, Schuengel, and Stolk have listed four relevant main factors that can increase risk of insecure attachment [9]. First, parents may have difficulty accepting their child’s diagnosis, causing stress and limiting their sensitivity to any signals of stress or discomfort. Second, the communication skills of persons with ID are generally weak, which can lead to misinterpretation of their signals and behavior. Third, persons with ID may struggle to master the skills that are typically considered prerequisites for developing an attachment relationship, such as object permanence and distinguishing cause and effect. Fourth, persons with ID will often encounter a variety of caretakers at home and school and during other daily activities, which can be a source of stress. Some children and many adults with ID spend time in residential care where the availability of caretakers is limited or irregular, which is disruptive for the attachment relationship with their parents or other primary caregivers [13, 14].

Sensitivity and responsiveness correlate with an ability to understand someone else’s needs and emotions [15‐17]. Empathy, which can be defined as the ability to tune into how the other person is feeling [18], is crucial in the development of a secure attachment style in children. Empathic behavior in parents is positively related to the attachment security and emotional openness of children [19]. Moreover, recent research by Settipani and Kendall [20] showed that higher levels of empathy allow mothers to estimate their child’s ability to face feared situations at a particular moment, a skill that is crucial in discerning when the child benefits most from a safe haven (providing comfort in times of distress) or a secure base (encouraging independence). Among medical professionals, empathy is positively linked to treatment outcomes, but this population shows a decline in empathy over time [21, 22].

In addition, self-efficacy can be an important factor in the behavior of parents and professional caregivers towards a person with ID [23]. For parents, a major source of experienced stress is their assessment of the situation and the various available support resources [24]. Parents who feel in control of the situation and are confident in their own parenting skills report lower stress levels than parents who do not feel that they can influence their child’s behavior [25]. A high level of parental stress may undermine parent sensitivity and responsiveness towards their son or daughter. Studies have shown that interventions based on attachment theory can boost self-efficacy in parents and induce attachment-related behavior between parents and their child [26, 27].

In short, improving the empathy and self-efficacy of caregivers may reduce stress in the home environment and, as a result, boost the cognitive and emotional functioning of the child. Various interventions have been developed to optimize attachment relationships between children and caregivers [26‐29]. Bakermans-Kranenburg, van IJzendoorn, and Juffer [30] found that short interventions with a clear behavioral focus on enhancing parental sensitivity were the most successful in improving secure attachment in infants. Furthermore, Schuengel, De Schipper, Sterkenburg, and Kef [31] conclude in a summary of available research that interventions focusing on insight into attachment behaviors and relationships are most likely to stimulate the development of attachment relationships in persons with ID.

Persons with ID have extra need for secure relationships with primary caregivers but can find making connections difficult. This study aims to explore the effect of a non-invasive m-learning intervention on the empathy and self-efficacy of caregivers, in view of improving attachment relationships with their family member or client with ID.

The m-learning is designed to teach or remind parents/relatives and caregivers of the importance of secure attachment relationships and to improve awareness of the perspective of their child or client. By increasing caregiver understanding of these topics, we expect that empathy and self-efficacy may grow, leading to better care and less stress in social interactions. To maximize the possible effect, the content was compiled in collaboration with parents/relatives and care professionals. The HiSense APP-ID is an m-learning intervention that can be done independently on any digital device and takes up little time. Thus, the intervention is suitable for adding to existing educational programs or as a periodic refreshment course for professional caregivers. The course is also easily accessible for family members of persons with ID. Furthermore, repeated exposures to information over a period of time can improve long-term learning gains [34].

At the same time, it remains to be seen whether independent participants will commit for the full duration of the course of 30 days or more. Automatic reminders will be sent to motivate participants, but some additional extrinsic motivation may be needed for them to finish the course, such as discussing the information with co-workers or with their partner. In addition, the content of the course is strictly theoretical despite its practical examples and recommendations. Participants must relate this information to daily practice and correctly apply their knowledge in new situations. In the case of questions, they may require the advice of a psychologist or behavioral scientist, such as a clinician at the care facility to which they are connected.

A practical concern may be that participants are not blind to their condition, which may cause bias in their responses on the questionnaires during the second measurement. However, test leaders are unaware of the condition of participants.

Because of a close collaboration with three large Dutch care centers in this project, the intervention can be implemented quickly if it proves effective. From the researchers’ point of view, the collaboration is helpful in offering the intervention to the target audience. From the parent and caregiver point of view, it is advantageous to be offered an evidence-based intervention that makes scientific literature on attachment theory available to them in small, practical portions.

In conclusion, the HiSense APP-ID can be a useful instrument for improving attachment relationships between persons with mild or moderate ID and their caregivers. Increased knowledge with regard to attachment theory may improve self-efficacy and empathy in parents/relatives and professional caregivers. Improving their basic knowledge may reduce stress and prevent the development of problematic behavior arising from a lack of experienced security in persons with ID.

Protocol version 1, dated 5 January 2018. The intervention has been developed. Recruitment of participants started within the participating care centers in October 2017, and data collection is planned to start in February 2018.