When Grandparents Take the Lead
By: Erica Delgado, BCBA, LBA-CT
A stakeholder is defined as a person with an interest or concern in something. Within the world of Applied Behavior Analysis (ABA), a stakeholder can be any person who is involved with a client receiving ABA services. Examples of a stakeholder may be a parent, guardian, schoolteacher, social worker, medical doctor, therapist, direct care staff or other family member. Once the Board Certified Behavior Analyst (BCBA) is able to identify all stakeholders pertaining to the client, an agreement, such as a treatment plan or behavior contract, will be agreed upon by all stakeholders.
So, what is the process if a stakeholder is a grandparent who resides within the home where ABA services are held? It is not uncommon for a grandparent of a client to reside within the home. In fact, 1 in 4 Americans live in a multigenerational household. According to The Pew Research Center (2022), about 5% of multigenerational households consist of grandparents and grandchildren younger than 25. Some households rely on a grandparent as a caretaker who may have high involvement with the client. Grandparents can certainly contribute positively but in some cases the grandparent may be one of the reasons a client displays behaviors or lacks progress with specific life skills. For example, a grandparent may not realize they are reinforcing maladaptive behaviors by holding and kissing the client when they have an outburst.
The role of the BCBA is now to prepare everyone within the household to understand the process of ABA services provided and how this will affect each family member throughout the time of services.
According to the Ethics Code for Behavior Analysts, a BCBA should make every effort to build a professional relationship with each stakeholder. It is important that every stakeholder agrees to the same plan and can execute the plan. When including a grandparent as a stakeholder, the BCBA may be faced with a few dilemmas. The BCBA must be mindful of the grandparent’s experiences, as well as determining the grandparent’s current involvement with the client and any prior knowledge of ABA. ABA is considered a relatively new field of practice. The beginnings of ABA began around 1960, so for the grandparent who was born before this time, may not have knowledge of the field. It wasn’t until 1968 when the Journal of Applied Behavior Analysis was started. The grandparent may have misconceptions of a client’s diagnosis. The stakeholder may not understand or know how to effectively implement the treatment plan. These dilemmas require solutions for reducing any barriers towards treatment, both for the initiation and for the continuance of appropriate ABA services.
In 2020, researchers Engstrand et al. published a study called, “Needs of Grandparents of Preschool-Aged Children with ASD in Sweden.” The study investigated perceived needs of grandparents of preschool-aged children diagnosed with Autism Spectrum Disorder (ASD), in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs. Researchers reported their findings on perceived needs of traditional grandparents of young children with ASD, as well as reviewed existing research on grandparents’ needs and experiences of having a grandchild with autism in a family system. Researchers used the Grandparent’s Needs Survey and the Strengths and Difficulties Questionnaire (SDQ) Impact supplement to collect data. Existing research findings reported in both quantitative and qualitative studies suggest that grandparents’ experiences of their relationships with their grandchild with ASD may be affected by a number of different factors: (a) grandparents characteristics, e.g., age, gender, lineage, level of education, employment status, health condition and geographical proximity to the grandchild; (b) grandchild’s characteristics, e.g., age, severity of ASD symptoms; (c) grandparents relationships with the grandchild’s parents and patterns of family functioning.
Studies have pointed to the significance of intergenerational relationships in supporting the needs of the child with ASD. For instance, in two qualitative studies, grandparents expressed most needs in obtaining information about ASD, and about strategies on how to manage grandchild’s tantrums and inappropriate behaviors, especially in public places. Despite these findings, research concerning the needs of grandparents of preschool-aged children with ASD is still scarce.
Engstrans, et al., therefore, intended to contribute to the field by addressing this gap in the literature and aimed to explore grandparents' perceived needs in relation to having a young grandchild diagnosed with ASD. The Needs of Grandparents of Preschool-Aged Children with ASD in Sweden study was part of a larger research project carried out in collaboration between the Department of Special Education, Stockholm University, and the Autism Center for Small Children (ACSC) at Habilitation & Health, Stockholm (2017). Data was collected from grandparents whose grandchildren with ASD were enrolled into the ACSC’s intervention programs. Overall, results indicated that grandparents expressed most needs within the subscale pertaining to information, followed by needs in topics related to childcare, thus confirming the first hypothesis; the least expressed needs were for financial support. The analyses of the Grandparent Need survey demonstrate that grandparents’ strongest perceived needs were in the area of information, especially, concerning how to help grandchildren develop skills, how to handle problem behaviors, and the effect of autism on grandchildren. These findings can inform practitioners about grandparents’ most and least prioritized needs in various topic areas, which may help practitioners improve already existing formal support programs offered to the grandparents.
Strategies a BCBA can implement to help a stakeholder (i.e., grandparents) become more involved:
Family Training- A BCBA may meet with the family and stake-holders regularly to discuss progress and concerns. The BCBA may also provide resources for the family to review. Resources may be an article, a website, a podcast, or a video. The BCBA may want to talk about ABA topics and offer examples. Family training should be geared towards the family’s needs and will be assessed regularly.
Use Clear and Approachable Language- This should take place when conversing with stakeholders, as well as having clear language throughout the treatment plan.
Hold All Stakeholders Accountable- Each party that signs the treatment plan or behavior contract must abide by it. The BCBA must be comfortable holding these parties accountable for what they agreed upon. The BCBA may review the contract regularly with the family as a refresher.
Review the Treatment Plan- The BCBA should revisit the treatment plan regularly with the family to make updates as applicable.
Establish Buy-in-Listening to and incorporating concerns of the stakeholder is important. Sharing data driven outcomes help a stakeholder connect the interventions they are asked to implement with the observable, behavioral outcomes. There must be a reason for the stakeholder to follow through with the plan.
In summary, all stakeholders involved with a client must act to be involved and appropriately follow the treatment plan. If there is a lack of understanding, the BCBA will continuously train and educate all stakeholders. If a live-in grandparent is considered a stakeholder, the BCBA must take all actions to build a positive working relationship. It is expected for all stakeholders to meet with the BCBA regularly and to communicate all concerns related to the client. It may be a good idea for a grandparent caretaker to prepare questions for the BCBA until their next meeting, so topics are relevant and current. The most important aspect of being a stakeholder is participation during a session. The client will make progress when all members within the household are engaging in the same manner.
Sources:
Bailey, J. S. & Burch M. R. (2022). Ethics for behavior analysts (4th ed.). Routledge, Taylor and Francis.
Cohn, D., Horowitz, J., & Arditi, T. (2022, March 24). Financial Issues Tops the List of Reasons U.S. Adults Live in Multigenerational Homes. Pew Research Center. Retrieved May 20, 2023, from https://www.pewresearch.org/social-trends/2022/03/24/the-demographics-of-multigenerational-households/
Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). In Applied Behavior Analysis (3rd ed.)., Pearson Education Limited.
Mayer, G.R., Sulzer-Azaroff, B & Wallace, M., (2019). Behavior analysis for lasting change (3rd ed.)., SLOAN PUBLISHING.
Zakirova Engstrand R, Roll-Pettersson L, Westling Allodi M, & Hirvikoski T. Needs of Grandparents of Preschool-Aged Children with ASD in Sweden. J Autism Dev Disord. 2020 Jun;50(6):1941-1957. doi: 10.1007/s10803-019-03946-w. PMID: 30825081; PMCID: PMC7261267.