Sensory Integration Education

Sue Allen sat down to speak with me about her research and work on Supporting Mothers of Children with Sensory Integration Difficulties which she presented on at the Sensory Integration Education Conference 2021: The Future is Sensory. From listening to Sue’s presentation, I had several questions that I was looking forward to discussing with her and I know many of our readers will feel the same. As a therapist working with parents and children in clinical practice, I could resonate with many of the findings from her research. 

Below is a synopsis of our interview and now you can access the full interview, with additional content, as a SensorNet Podcast or Video:

_{Sue Allen}

SensorNet: Tell us briefly about your current role and where your research work is focused currently.

Sue Allen: I am a lecturer practitioner at Wrexham Glyndwr University in beautiful North Wales. I work in private practice one day a month because it’s such a privilege to work with children and families and I can’t quite let it go. At postgraduate level, I teach and mentor advanced clinical skills and supervise MSc research projects. I am currently undertaking a PhD in Psychology with University of Reading exploring the impact of sensory integration difficulties on family life and strategies to enhance participation.

SN: You worked in Kaleidoscope Therapy Centre in Singapore – what were the cultural differences in working there clinically in comparison to the UK? How did SI practice differ?

Sue: I was fortunate in Singapore to work clinically with an amazing team of OT/ SLT/PT/ Psychologists and an Art Therapist. Team working enables wider practice and strategies for supporting families and provides a fantastic environment for MDT learning. I particularly valued the experience of working with highly experienced DIR-floortime OTs and SLTs. I also worked as part of the SAOT paediatric special interest group with a highly motivated group of young occupational therapists.

Culturally, there are many more similarities than differences. Having worked in the UK, USA and Asia, the clinical reasoning is consistent but every family is unique and our starting point needs to be to understand the beliefs, values, motivations and goals of each family group. The MOHO model particularly helped me to step back and reflect on assuming nothing and respecting everything. The trust that families place in us as therapists is a fragile gift and I guess the shift that I made in this context was slowing down my practice to increase my awareness and understanding of each child and their social and environmental context. It’s not quite that less is more but more that we need to be very considerate in working to our client’s agenda and not our own. Also, that grandmothers are important in any culture whether they are physically present or not!

SN: What sparked your interest in your research topic of Supporting Mothers of Children with Sensory Integration Difficulties? What were you seeing or experiencing in clinical practice which led you to research this further?

Sue: Two things: the first was that, when I worked at Dingley Specialist Child Development Center in Reading, we experienced, as many services do, a massive increase in referrals. As a team we were directed to focus on reducing waiting times so we needed to think about different ways to deliver services. We started to run sensory parent training groups once a month to stop us having to repeat information. Parents found this helpful and an evaluation of this was written in the OT News publication (Simmonds, Davies, Allen 2016).

The second thing: I mentioned in my SIE Annual Conference presentation that we always had a box of tissues on the table for initial assessments as so many mothers were distressed. Liz Stephenson had talked and written about families of children with motor learning difficulties (an old term for DCD) in the past and she generously shared her experience and reflections (Stephenson & Chesson 2008). The first step was to try to measure the stress and try to work out what it might correlate with. We looked at this within the DCD pathway to begin with, where we asked mothers attending with their children for DCD initial assessment to complete the Parent Stress Index. Rates of parent stress in mothers was shockingly high and way above what would typically be expected. Stress levels correlated with maternal social support, coping and child sensory processing (Allen, S. & Knott, F. 2016)

SN: Why is it important to reduce parent stress?

Sue: When parent stress is high, it is linked to poorer mental health outcomes for both parent and child and increased risk of child abuse. This data is very clear (Abidin RR, 2012). Families are at risk when the stress levels are very high. 

SN: From looking at this area of research myself, within the topic of Autism, I was struck by the volume of research on parent stress, lack of coping, emotional burden when rearing a child with Autism. The research appeared to be very deficit focused. Do you feel there is more attention turning to a strengths-based perspective when considering parental perspectives and supporting parents now?

Sue: Short answer yes but there is a balance here. When using an SI model or a coaching approach we are helping those who care for the child to reframe behaviour. Whether we use a deficit-focused or strengths-based approach, at least, part of what we are doing is helping to adapt the social environment to better understand and meet the needs of the child.

SN: What is known currently about parent coaching interventions for parents of children with sensory processing and integration difficulties?

Sue: We know that one-to-one coaching of parents or individual families can reduce parent stress and increase child functioning. Generally, the longer interventions (that is 10 sessions) provide better outcomes for child related goals, but even 4 sessions had some impact on some child goals. Two studies (Pashazadeh Azari et al., 2019, and Dunn et al., 2012) showed improvement in parent self-efficacy and one study (Dunn et al., 2012) demonstrated improvement in parent stress. The impact of parent self-efficacy and stress is particularly exciting for me to see as it takes us back to the premise that when parents are less stressed, mental health outcomes are better for both parent and child.

SN: One of the gaps noted in your scoping review was the use of individual vs group interventions for parents. What did these interventions involve?

Sue: From a sensory perspective, the studies which used an individual coaching approach involved 4 – 10 sessions. Only one study in Occupational Therapy (Gee and Peterson, 2016) has explored group parent and teacher intervention. This study used five sessions of education and the final session included the use of Lucy Miller’s A SECRET model. Outcomes measures were informal and looked at parent knowledge and competency. 

SN: There are several models of parent coaching available, which you detailed in your presentation - how do you feel they fit with an SI approach?

Sue: SI provides a way of understanding movement and behaviour. When we assess using an SI model we are describing a hypothesised link between performance deficits and function. When we treat using ASI, we focus on changing or developing a child's sensory integration in order to improve their participation in occupation. I think many of us are using parental coaching and some of the models of coaching that exist help us do that in a structured way. Starting from coaching research in business, Miles Downey articulated a simple structure TGROW (Topic Goal Reality Options Wrap-up). In the most simple terms, ask the parents (and where possible the child) what their goals are and support parents in their own problem solving. This comes from the perspective that families are their own experts in their own lives.

SN: I was interested to hear more about Graham’s (2021) coaching framework and what the main principles are that we, as therapists, can translate into practice?

Sue: The main principles of this model involve three steps: Connect, Structure and Share.

• Connect with the parent – listen and empathise.
• Provide a structure – help them identify what their goal is and help them to think about activity analysis, what are their choices, where could they take that.
• Share – use of what is known but at their pace. As OTs, we are automatically problem solving and the SI framework gives us an idea of what the issues and solutions are. But it is not always helpful if we give parents a huge list of this is what you have got to do. What we need to be able to identify is when they are ready for different pieces of information and not impose our solutions upon the parents. Asking for permission to share and using language such as “I wonder if you have thought about doing it this way” or “I wonder if you have come across this resource”. The parents' own problem solving skills are more important. In this way you are opening the door for parents and giving them the opportunity to expand their learning and problem solving but at a pace they are comfortable with because that will be more likely to support change.

SN: You spoke about educating people around the child – how can we as therapists work towards this? Involving fathers, grandparents, extended family members etcetera. How do we expand the center outwards? I am aware Shelly Lane, one of your advisors, has been focusing her research on playfulness interaction in father-child pairs.

Sue: Yes. interestingly work with fathers (not sensory focused) suggested that we need to think about different ways to work with fathers, for example, text messages rather than parent groups but this is not yet fully explored. There are a few issues around social relationships in mothers of children with SID:

• When fathers are involved and understanding, mothers do better.
• Grandmothers can be key supporters.
• Families and extended families can act as barriers or facilitators. This needs more exploration but it makes sense that building understanding, from as early as possible, helps to build the community of support around the child. In practice, this might mean making time to include fathers, grandparents, aunties or uncles. Working in the home environment might give families more chances to ask questions, build understanding or problem solve for themselves. Encouraging parents to bring along a friend or family member to Occupational Therapy sessions or parent events helps to strengthen the support network around the parent and child.
• But our work also shows it’s not just families but friends, other parents, and education and health professionals that can help. We still need to work on getting simple messages out like sensory integration difficulties are real – they impact children and families' participation in everyday life. It is so important to listen and validate parents’ concerns. 

SN: Education of parents and those around the child and empowerment of mothers are two areas where the evidence base is lacking. What kind of research do you feel is needed here that would benefit families and therapists?

Sue: Education – there are lots of great resources available so signpost families to these. Adult learning theory tells us that education on its own does not lead to change in behaviour. Learning needs to be embedded into the individual's context. What we don’t yet fully understand is the contribution of education versus coaching and further exploration of the dosage and outcome of each and a combination of both on family participation would help services target resources efficiently and provide evidence based practice.

Empowerment of mothers might be more difficult to measure. From our in-depth interviews with mothers there was repeated incidence of mothers not being listened to by school and/or healthcare professionals ‘when I said I thought something was not quite right the HCP just laughed’ or parents being blamed ‘they kept telling us it was our parenting’ ... so we need to look further at supporting parent sense of competence.

SN: Group Parent coaching sessions – there are many benefits to this type of parent coaching as we heard from your research. What advice would you have for therapists looking to set this up within their own caseloads? What key principles are important to consider and include when using this approach?

Sue: Research so far is not enough to guide practice but it’s about seeing the parent as the expert on their own families lives. This does not preclude sharing information but it does mean you start with what the parent identifies as their own goal. Traditionally our role has been to act as problem solvers, but when we are coaching parents the emphasis subtly changes to the OT supporting the parent to be their own problem solver.

SN: SI difficulties were found to impact the relationship between the child and the mother – can you expand on this and what it means?

Sue: We asked mothers how does your child’s SID impact your relationships. In all relationships a minimum of 60% said it had some negative impact. It appears to have the biggest impact for mothers on partner relationships. 

For the child’s relationships with others, mothers perceived a negative impact on every reported relationship (with mothers, with family and extended family, with school staff and with peers) at least 60% of the time. The most significant impact was seen in peer relationships. 70% of mothers identified that their child’s SID has a negative impact on their child-mother relationship. This area needs to be further explored.

SN: Are there any particular resources, websites or information you could guide therapists towards?

One of the things about coaching is that it can feel complex and we can worry about getting it right. For me, just starting with the absolute basics from Graham’s (2021) coaching framework, which involves Connect, Structure and Share, and Myles Downey’ TGROW coaching model, explained in his book Effective Coaching, made it feel more manageable. Other resources include:

• Rush D & Sheldon M (2011). The Early Childhood Coaching Handbook. Brooks, Baltimore
• Fiona Graham: Occupational Performance Coaching
• Caroline Hui at Choose to Learn

SN: It is clear that across the board there was much more online remote work conducted by therapists during the COVID-19 pandemic. Do you think this has led to an increase in parent coaching as a result, since face-to-face intervention with children was reduced?

I think as OTs we frequently coach parents without thinking about it, especially when parents are in intervention sessions. We are doing it informally anyway! Coaching sits well with online working and also places the conversation in the natural context of the home environment.

SN: Can you tell us more about the pre-feasibility study of a brief group parent coaching intervention?

Sue: We have done a pre-feasibility study which looks at the process. We have just finished round one of this process and it appears feasible. From this, we are going to make some changes to the outcome measures that we are using and the way we are recruiting parents. Our feasibility study is scheduled for March. It will take us another year or so to write that up. 

SN: Is there anything else you wish to add or share?

Listen to and advocate for parents. Talk to anyone who will listen that SI differences are a barrier to participation. Intervention through education, coaching or direct intervention make a difference to the lives of children and families. 

Thank you for your interest in this topic and to all the parents and therapists who have contributed to this body of work.

Request for feedback:

We still have a repeat questionnaire open to look at changes in practice in parent support over the last two years and would be very grateful to get a picture of current practice at this link: https://reading.onlinesurveys.ac.uk/therapist-experience-2-parents-of-children-with-sensory.

SN: Thank you Sue Allen for your time and expertise!

References 

_{Abidin RR (2012) Parent Stress Index, Fourth Edition. Lutz, FL: Psychological Assessment. Resources}

Resources

_{Allen, S., Knott, F. J., Branson, A., & Lane, S. J. (2021). Coaching Parents of Children with Sensory Integration Difficulties: A Scoping Review. Occupational Therapy International, 2021. https://www.hindawi.com/journals/oti/2021/6662724/}

_{Allen, S. & Knott, F. (2016). How do children's challenges to function and participation impact maternal stress? New Zealand Journal of Occupational Therapy, 63 (2), 29-37.} 

_{Azari, Z. P., Hosseini, S. A., Rassafiani, M., Samadi, S. A., Hoseinzadeh, S., & Dunn, W. (2019). Contextual intervention adapted for autism spectrum disorder: An rct of a parenting program with parents of children diagnosed with autism spectrum disorder (asd). Iranian journal of child neurology, 13(4), 19. Available at https://pubmed.ncbi.nlm.nih.gov/31645864/}

_{Downey, M. (2003). Effective coaching: Lessons from the Coach’s coach: Lessons from the Coaches’ coach. Texer, UK.}

_{Dunn, W., Cox, J., Foster, L., Mische-Lawson, L., & Tanquary, J. (2012). Impact of a contextual intervention on child participation and parent competence among children with autism spectrum disorders: a pretest-posttest repeated-measures design. The American journal of occupational therapy : official publication of the American Occupational Therapy Association, 66(5), 520–528. https://doi.org/10.5014/ajot.2012.004119}

_{Gee, B. M., & Peterson, T. W. (2016). Changes in caregiver knowledge and perceived competency following group education about sensory processing disturbances: an exploratory study. Occupational therapy international, 23(4), 338-345. https://pubmed.ncbi.nlm.nih.gov/27374620/}

_{Graham F, Kennedy-Behr A & Zivianni J (2021) Occupational Performance Coaching: A manual for practitioners and researchers. Routledge, Abingdon.}

_{Pashazadeh Azari, Z., Hosseini, S. A., Rassafiani, M., Samadi, S. A., Hoseinzadeh, S., & Dunn, W. (2019). Contextual Intervention Adapted for Autism Spectrum Disorder: An RCT of a Parenting Program with Parents of Children Diagnosed with Autism Spectrum Disorder (ASD). Iranian journal of child neurology, 13(4), 19–35.}

_{Rush, D. D., & Shelden, M. L. L. (2011). The Early Childhood Coaching Handbook. Brookes Publishing Company. PO Box 10624, Baltimore, MD 21285.}

Simmonds, A.J., Davies, E. & Allen, S. (2016). Working in partnership to support the best outcome for children. OT News. 1:46.

Stephenson, E. A. & Chesson, R.A. (2008). ‘Always the guiding hand’: parents' accounts of the long-term implications of developmental co-ordination disorder for their children and families. Child: care, health and development. 34(3), 335-343. Abstract available at https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2214.2007.00805.x 

Websites

OPC Otagao University, Wellington

Caroline Hui at Choose to Learn

Sensory Minis videos – short introductions to the sensory systems