1 Prof. Diane Cox, Dr. Carol Marrow, Dr. Helen Wilby.Myth or Reality?: How do Occupational Therapists address the spirituality of children with physical disabilities?. Liz Harrison. Prof. Diane Cox, Dr. Carol Marrow, Dr. Helen Wilby. 20/06/17

2 Who am I? Liz Harrison Senior Lecturer at the University of Cumbria, England. Occupational Therapist (OT) Discuss who I am, where I’m from and experience in NHS, particularly working with children. Acknowledge RSDF funding Undertaking a PhD to explore how OTs address the spirituality of children with physical disabilities in their practice. The current presentation outlines my work so far

3 Why am I doing this? Exploring the history & values of the profession highlighted a gap in knowledge Spirituality is a debated issue within OT with no firm conclusions having been reached (Harrison, 2009; Morris, 2013). Adding to the evidence base regarding this area of OT practice The MSc OT led me to reflect on my practice and wonder how holistic I was. I did not really know what spirituality is, or how I should be addressing it in my practice. At the time I was working with children with physical disabilities and the whole team were increasingly frustrated by the increase in procedure & bureaucracy and the lack of opportunity to do ‘real OT’. I was also conscious of what I have come to understand as Heidegger’s notion of “the dictatorship of the ‘they’” – relate to the imposition of occupations on children - ‘power’ differences (Reed, Smythe & Hocking, 2013). Therefore shaping their identity for them – especially those with disabilities; do they grow up seeing themselves as a child with a disability thereby limiting their potential for growth, participation & exploration of their potential?? “I have an arm that doesn’t work properly”; “I need a wheelchair to get around”; “I need help with carrying my school bags”; etc. – “therefore I can’t ……..!”. Could the child’s spirituality play a role in mitigating this and what was the OTs role in enabling this to happen? Following on from the MSc, I decided to look at spirituality in OT. Having completed a systematic literature review it became clear that the situation was far from conclusive and that there was no evidence at all of OTs addressing the spirituality of Children with PD. One researcher reported that a participant had stated that children don’t have a spirituality! I therefore decided to explore this area further.

4 Methodological Framework for the PhDIterative, inductive process; therefore I am using: Interpretative Phenomenological Analysis (Smith Flowers & Larkin, 2009) Heuristic Reflexivity (Moustakas, 2000) “ [an] iterative approach … involves adapting research methods as the data-gathering generates new information….” (NursingTimes.net, 2013) “In inductive reasoning, we begin with specific observations and measures, begin to detect patterns and regularities, formulate some tentative hypotheses that we can explore, and finally end up developing some general conclusions or theories”. (Web Centre for Social Research Methods, 2006). Making it up as I go along!! Therefore firmly sited in Qualitative methodology. Constructivist Grounded Theory – This is the overarching methodology for the complete project (a la Harrison) due to the iterative nature of grounded theory. I felt it was important to not just find out about the participants’ thoughts & feelings but also to hopefully come up with something useful from these (thoughts & feelings ‘grounded’ in reality), an explanatory framework for practice. As it’s grounded theory I therefore haven’t done an extended literature review yet, just enough to develop the research question, to inform the research proposal and a quick update following the first phase. Charmaz initially trained as an OT. Reflexivity is important to enable the researcher to review their own thoughts & feelings on the subject and to ensure that these are not ‘leading’ the research in any way (especially important due to my own background). Heuristics is concerned with ‘personal discovery’ and, as I didn’t really have an idea of what spirituality is, I am using this methodology to analyse my own developing understanding throughout the research process. To facilitate this I am using heuristic methodologies containing reflections based on digital photographs – a creative method of facilitating reflection (Harper, 2002) appropriate to the creative nature of OT. Two strands acting as warp and weft to weave the research into a rich and textured exploration.

5 How did I carry out Phase 1?Two creative workshops with 8 OT lecturers as participants (3 in one & 5 in the other). One hour creative work to express the meaning of spirituality in practice for each individual (Horsfall & Titchen, 2009; Newton & Plummer, 2009) One hour group discussion Ethics approval for this first phase was received from the University where the lecturers were employed and the ethical principles of informed consent, confidentiality & data protection were adhered to throughout. All the participants chose their own pseudonyms. The group discussions were recorded and transcribed verbatim The data were analysed using Charmaz’s Constructivist Grounded Theory approach (2006). OT lecturers were asked to participate for this phase due to their background as clinicians alongside their knowledge & understanding of the underpinning OT theory. The aim was to develop a baseline definition of spirituality in OT in general. Five of the participants had a physical background and 3 had a mental health background. Creative workshops were used as creativity is recognised as a tool for facilitating reflection (Horsfall & Titchen, 2009; Newton & Plummer, 2009); it also embeds the research in an OT context (along with the essential tea & biscuits!). The group discussions started off with each participant explaining what they had created and it’s meaning, in order to get the ‘conversation’ going and to facilitate analysis of the created work.

6 How did I carry out phase 2?Phase 2 involved 12 individual interviews with OTs working with children to: Determine their knowledge, thoughts, feelings & perceptions regarding the spirituality of children with physical disabilities in practice. Explore how spirituality is addressed in practice with children with physical disabilities Wanted to explore the concept in actual practice

7 What have I found out so far?Four strands emerging: Identity Connection Hope Power (analysis ongoing) Overall the participants found this quite a difficult subject to discuss; they struggled to define spirituality and then demonstrated difficulty in discussing its application. This was evidenced by the number of pauses, word repetitions and use of erms, umms & Hmms; as well as verbal expression of difficulty. Starting to think it was a myth. However, a lot of useful data has been elicited so far. Not categories yet, more data and more work needed. I’ll go on to briefly discuss each of these strands with examples of artwork form the workshops & some reflective photographs.

8 Identity “the core, as I see it, it’s something that no-one can get to and no-one can see, so it’s all hidden” Fiona. “It’s kind of about the skin we’re in and what makes us tick” Stan “Its just who you are. In a nutshell” Catherine The discussion regarding what spirituality is relates particularly to the humanist concepts of that which has meaning & value to individuals and that spirituality is part of who we are – our identity. Whilst religion is recognised as being a part of spirituality and of having significance to some more than others it is felt that spirituality is definitely more than just religion, it is essentially all that makes us Human - a desire to seek & know peace, harmony, hope & fulfillment in our lives. I am surprised by the lack of adjectives related to awe, wonder or the divine (common descriptors of spirituality) is this due to the humanist, pragmatic background to the OT profession? The overall feeling so far is that spirituality cannot be conclusively defined as it is so individual and that as OTs we need to find out what our client's spirituality means to them (as per Smith 2008). This is, however, considered to be difficult as spirituality can be an obscure aspect of people’s lives, sometimes even for themselves, with only small clues/glimpses being offered; although this is dependent on the individual. Smith (2008) advocates a framework approach to enable exploration of individual meanings, rather than trying to develop a definition for the profession (although AOTA, CAOT & COT have all done this). Spirituality is said to affect the way people behave and frame the way they think; any changes in behaviour or thoughts could therefore have a resultant impact on an individual’s spirituality. An individual’s spirituality would therefore also have an impact on their occupational lives and any changes in occupation, or the ability to carry out occupations would affect their spirituality. Main Points: Spirituality is about what holds meaning & value to individuals and is a part of who we are – our identity. Cannot be conclusively defined – must be determined for each individual Can be obscure & difficult to verbalise but also is embodied, therefore observable. Affects the way we behave & think, as well as our occupational choices – reciprocal relationship.

9 Connection. “I’d want the OT to connect with me” Catherine“It’s about taking that time, erm, and about developing that relationship with the child” Sarah. “I think spiritual moments can come from those close relationships when you respond to the subtleties & nuances of how people are” Janette Addressing client's spirituality is seen as an essential, embedded part of OT practice with the aim of getting to know someone; finding out what is meaningful to them & allowing each person to tell their story in order to support & enable them. Assisting us in doing this is our understanding of the uniqueness of each individual we work with and it is proposed that this attempt to understand individuality enables us to determine that person’s spirituality – what has meaning & value to them, what is their essence, what makes them tick? This understanding of each person’s uniqueness then guides our intervention. The participants feel that the most valuable way of addressing spirituality with each client is through the connected relationship we develop with that person. This is felt to be more than just lip service to ‘a therapeutic relationship’ where there is a therapist & a client interacting and the words ‘connection’ & ‘engagement’ were frequently used to describe the truly interactive element. It is felt to be important that the OT should really try to find out who their client is and show acceptance for who they are (reflecting humanist principles). This enables trust to develop and from this trust empowerment may be facilitated. Whilst lack of time could be seen to be a factor here the participants stated that it is possible to develop a connection quickly, particularly if the therapist has the skills and the client feels they are being listened to and is open to making the connection. Behaviours of the OT which facilitate the development of a connection are seen as: respect; honesty; trustworthiness; showing interest; being upfront; being clear & consistent and being aware of the potential for power imbalance. Main Points: Addressing spirituality an essential embedded part of OT practice Developing a connection with clients seen as vital to enabling the expression of spirituality Trust is developed and this facilitates empowerment Connection can be developed quickly The way the OT behaves when interacting with the client can facilitate connection.

10 Hope “I want to be able to do x, y or z and everybody else is doing it, why can’t I?” Emily “Yeah, that they don’t necessarily need to be limited by their physical difficulties” Sarah “He’d just never been able to experience that, he can now” Oscar Hope was seen as being intertwined with the development of a child’s potential. The participants saw OTs as being empowering facilitators who work with the child to determine their hopes and dreams and attempt to enable them to reach these, thus influencing their identity and their spirituality. According to Snyder’s Hope Theory (1991) there are 3 elements to Hope: The ability to develop appropriate goals in order to provide direction. (the goals) The individual’s perceived ability to find pathways to meet these goals and strategies to change pathways if barriers are met. (the ways) The individual’s belief in their own agency, i.e. their ability to meet these goals and their motivation to do so. (the will) These elements are all fundamental to occupational therapy intervention and were first iterated in 1919! Interestingly there are no articles in any of the major international OT journals mentioning hope within the title, key words or abstract. At the International Association for Children's Spirituality’s conference in Leuven, Belgium last year, many eminent speakers in this field talked about the self agency of children and how adults needed to recognise this more; Leading on to

11 Power “I think for children a lot of the activities are dictated to them” – Emily “I think the tradition of a checklist really takes you away from that” Janette. “We also are being scrutinised constantly about our throughput of work” Oscar. “We want to be on the support team not the instructor” Katie. There were perceived to be two main themes within this area: Power relationships which affect the OTs and the way they practice; & Power wielded by adults in their relationships with children. The threats to addressing spirituality in practice include lack of knowledge & confidence in addressing spirituality; lack of time; procedure driven environments (use of tick box assessments) and the perceived need to measure the outcome of everything we do. Previous literature (N. American) highlights the lack of assessment tools and outcome measures as barriers, however, the participants here feel that this is not the case – spirituality is seen as being part of everything we do and a part of who we are as OTs – it shouldn’t therefore be assessed, intervened or measured as it is an integral and essential part of our interaction with every child. Power imbalances created by policy and procedures and a perceived lack of time are seen as leading to reductionist pragmatic interventions – operating as technicians, not professionals. In terms of relationship it was clearly felt that enabling a positive connection with each child and ensuring that all interactions involved them was of vital importance. Practice needs to remain child-centred, listening to the child and not necessarily deferring to the wishes of the parents, carers or other significant others. The role of the OT as advocate was clearly expressed.

12 In summary The analysis so far is constantly changing but is of value in developing early hypotheses about what spirituality is to OTs and how it is addressed in their practice. Highlighting a theory practice gap

13 Thank You for listeningIf you have any questions, comments or feedback then please do catch up with me over the rest of the day; or you can me on:

14 Acknowledgements An earlier iteration of this presentation, outlining the results from phase 1, was delivered at: College of Occupational Therapists Annual Conference, Glasgow, Scotland; June 2013; & International Association of Children’s Spirituality conference, Leuven, Belgium; July 2013. Funding for these conferences was provided by UoC’s Research & Scholarly Development Fund.

15 References American Occupational Therapy Association. (2002). ‘Occupational Therapy practice framework: Domain & process’. American Journal of Occupational Therapy. 56, Bee, H. & Boyd, D. (2007). The Developing Child, 11th Edn. Boston, Mass. Pearson International Edition. Charmaz, K. (2006). Constructing Grounded Theory. A practical guide through qualitative analysis. London. Sage Publications.

16 Canadian Association of Occupational Therapists. (1991)Canadian Association of Occupational Therapists. (1991). Occupational Therapy guidelines for client-centred practice. Toronto, Ontario. CAOT publications ACE Canadian Association of Occupational Therapists. (1997). Enabling occupation. An Occupational therapy perspective. Ottowa, Ontario. CAOT publications ACE. Christiansen, C. (1997). ‘Acknowledging a spiritual dimension in Occupational Therapy practice’. The American Journal of Occupational Therapy. 51(3),

17 COT (2004). ‘Definition of Occupational Therapy, it’s values & beliefs’. Available at: Last accessed 05/07/13. Harrison, V.E. (2009). ‘Should Occupational Therapists address the spiritual needs of children with physical disabilities within their practice? A literature review’. TREP7000 assignment, University of Cumbria.

18 Horsfall, D. & Titchen, A. (2009)Horsfall, D. & Titchen, A. (2009). ‘Disrupting edges – opening spaces: pursuing democracy and human flourishing through creative methodologies’. International Journal of Social Research Methodology. 12(2), pp 147–160 . Kang, C. (2003). ‘A psychospiritual integration frame of reference for Occupational Therapy. Part 1: conceptual foundations’. Australian Occupational Therapy Journal. 50, Meyer, A. (1922/1977). ‘The philosophy of Occupational Therapy’. Archives of Occupational Therapy, 1, Reprinted in American Journal of Occupational Therapy, 1977.

19 Moustakas, C. (1990). Heuristic ResearchMoustakas, C. (1990). Heuristic Research. Design, Methodology and Applications. California. Sage Publications. Newton & Plummer, (2009). ‘Using creativity to encourage reflection in undergraduate education’. Reflective Practice: International and Multidisciplinary Perspectives. 10(1). Morris, D. N. (2013). ‘Perceptions of Spirituality and Spiritual Care in Occupational Therapy Practice’. Occupational Therapy in Mental Health, 29(1) pp

20 NursingTimes.net ‘Understanding the value of qualitative research in Nursing’. Available at: Last accessed 12/06/13 Reed, K., Smythe, L. & Hocking, C. (2012). ‘The meaning of Occupation: A Hermeneutic (Re)view of Historical Understandings’. Journal of Occupational Science. DOI: /

21 Web Centre for Social Research Methods (2006). Available at: Last accessed 12/06/13