Family centred Early Intervention programmes in Jordan: a grounded theory study into family and occupational therapists’ collaboration Nisrin Alqatarneh PhD student at the University of Essex nsmalq@essex.ac.uk

Main concepts: What is Early Intervention EI? Occupational therapy role in EI Family centred approach

OT in Jordan HCD report on EI services in Jordan: OT was introduced in Jordan in 1988, the diploma programme continued until 1997 First BSc programme in 1999 at 3 different universities (jsot-jo.org) HCD report on EI services in Jordan: 64 centres that offer EI programmes in Jordan Only 59% have OT working EI is defined as programme for children age 2-5 years http://hcd.gov.jo/

Research aims: To investigate: The perspectives of families regarding their role within the intervention, and what steps were taken by OT to establish/encourage this role. The perspectives of OT on how they facilitate family-therapist collaboration within EI programmes.

Methodology: Constructivist grounded theory Why? Reality is constructed through process The research process as an interaction with different contextual levels; temporal, cultural, and structural Researcher and participants co-construct data Charmaz (2014)

Data collection: 2nd phase 1st phase Observations Review records Interviews with OT Interviews with parents 2nd phase

Research Findings: Parents OT Power imbalance Cultural view Rejecting suggestions “they tell me what they expect” Adherence Expectations Level of involvement “They are the experts” Blaming Cultural view EI policies Location in session language Power imbalance Health system OT education Guilt Frustration

Lost in translation Using different levels of language: During the meetings (using Jargon): During the sessions: “two times the mother asked for an explanation or clarification” “Arabic was used mostly but most of the terms used were translated from English and are profession specific, such as (Ta’del Alsolook- تعديل السلوك) behavioural modification” “the team discussed the child after each activity using English, and the mother did not seem to understand.”

Parent’s location in the session Included or excluded: Hands on therapy vs. coaching “the mother and child were asked to sit on the mat with the mother behind her child, the team sat in a circle around the child “ “the child was seated on the mat in front of a wall mirror with the OT sitting behind her, the father sat on a small chair at the back of the room […] he did not at any point work directly with the child but continued to sit to the back”

“they are the experts” Decision making when setting the goals: S.A parent interview Giving comments during sessions: L.E parent interview “they would say they are going to focus on this or that, they did consult us in what they did, but we don't have any experience in their work, they are the experts, and whatever they told us they were doing would be the right thing! so we would agree” “Yeah, I tell her, but I say she knows better than me, I wouldn't know more about therapy than the therapist”

Parents’ involvement Being informed of the goals: T.M parent interview Involvement as receiving directions: “I don't really interfere in these things, I just , you know she is the specialist, so I can for example ask her questions, like what should I do for her legs at home, and she would tell me (at home you have to be careful, you need to do these exercises or that exercise)” L.E parent interview “for the occupational therapy, she told me (I'm preparing her now so she could dress independently, or strengthen her right arm) so they did involve me”

The blame: Parent’s metaphor: OT perspective: “here they place this responsibility over the parents, they say the parents should cooperate with them, and do the therapy at home” S.A parent interview OT perspective: M.R OT interview “they should work with their child at home, they see their child more, it is their responsibility to follow up at home”

Adherence: Parents’ perspective: Parents’ Cooperation: Y.A parent interview Parents’ Cooperation: A.L OT interview Y.S OT interview “some people would understand what you are talking about, and they accept it, and others they just refuse to accept “In the EI I’m supposed to attend the sessions and follow the instructions of the staff” “there are people who I would have to tell them I will focus on this and that and they would just tell me to do as I please”

Expectations: Parents’ expectations: According to OT: “we at the time wanted our son to walk, that was our priority, and maybe it was the wrong priority, it was the most important” S.A parent interview According to OT: “there are people who want nothing, it is not clear to them what they want for their child, they just tell me (do as you want!) and during the session you have to ask them and prompt them a thousand time about this” A.L OT interview “they usually don't have a clear idea of what the programme is, they come here asking for physiotherapy and expecting their child would just take sessions” M.R OT interview

Making suggestions: During the sessions: Regarding the intervention: “like the other time, I told her that we have been focusing for a long time on sitting and I want my child to start standing, […] the therapist did add exercise in the session to help my child stand, and to help her sit, turn and stand, she did include standing, but I don't really interfere in these things” L.E parent interview Regarding the intervention: “the OT wanted to do a splint for my daughter's hand, the OT and I went to the doctor here, he thought she did not need one, although I was convinced she did need a splint {…} I was talking to the therapist that I still think we need to do a splint” M.M parent interview About the programme: “to be honest I had a suggestion regarding this [scheduling sessions], frankly there was a misunderstanding regarding my suggestion, like the staff thought I was interfering in their work, what I suggested was related to my situation {…} but the staff refused the idea” T.M parent interview

Guilt: “I look at my situation and I ask myself should I have done more to my son? you see I sometimes find myself have failed him” “I do feel guilty now that if we did follow up especially with the physiotherapy my son will be walking now, but I know we had no time for home programme, and my wife worked, so it was just not possible” S.A parent interview Frustration: “to be honest with you I have no idea what to do, it is like why aren’t they cooperating? what is the reason? I wish I could know an answer, something to do or at least the reason why” M.R OT interview “there were also people who said (if I want to do the therapy myself I wouldn't come here in the first place! and I wouldn't pay money!) can you imagine this!” A.L OT interview

Conclusions: Parent-therapist collaboration is a process, starts with expectations Therapists are technical experts Parents are child experts Partnership in therapy is more than asking about the parents’ goals Empowerment of parents requires advanced skills Power imbalance produces guilt and frustration

Any Questions? Or comments? Feel free to contact me: Nisrin Alqatarneh nsmalq@essex.ac.uk Any Questions? Or comments?