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“ He ’ s hard work, but he ’ s worth it ” Parents of people with learning disabilities and challenging behaviour Research Autism July 2014 Dr Gemma Griffith

“ He ’ s hard work, but he ’ s worth it ” 391 Parents of people with learning disabilities and voices challenging behaviour Griffith & Hastings Published in: Journal of Applied Research in Intellectual Disabilities

What is qualitative research? Attempts to ‘ get under the skin ’ of peoples experience (e.g. what is it like for people with learning disabilities [LD] to live in supported accommodation?) Many different types of qualitative methods… For this research, we looked at studies that interviewed or observed people.. AND that analyzed and interpreted the data in a systematic way. Add stuff about stories here….

What is a meta-synthesis of qualitative studies? Our Question: What do parents of people with LD and challenging behaviour have to say about their experiences of support services? A systematic search of the literature to find all studies meeting criteria. To take stock of the research conducted so far, and to bring it together in a higher-order qualitative analysis to find new meanings. The aim is not to simply ‘ merge studies in a kind of averaging process ’ . (Walsh & Downe, 2004, p. 209)

Introduction The purpose of this review is to synthesise the qualitative literature on: …the perspectives of those caring for a family member with intellectual disabilities and challenging behaviour ….with a focus on their experiences of support services

Methodology (1) 1) First, we extracted the result sections of each of the included studies, which were read multiple times. 2) Each line was given a code e.g. the extract: “ It were cos ’ I felt angry, and I used to cut. ” was given the code ‘ anger as reason for self-harm ’ . 3) Similar codes were brought together in a table and made ‘ master ’ themes, and subthemes. We made one master theme table per study Master theme Page Supporting quote “ Respite care couldn ’ t cope with her Respite services p. 92 unable to cope not sleeping so constant phone calls to come and pick her up. ” “ They phoned me up about 5.30 ‘ could p.93 I come and pick her up ’ they couldn ’ t cope ”

Methodology (2) 4) After we made a master table for all studies, these were synthesised together into one table which incorporated all studies Master theme Study Supporting quote Respite services Subtheme 1) Can ’ t “ Respite care couldn ’ t cope with her not 1 cope sleeping so constant phone calls to come and pick her up. ” “ They phoned me up about 5.30 ‘ could I 1 come and pick her up ’ they couldn ’ t cope ” “ one day he came back with his head Subtheme 2) lack 3 split open. And they don ’ t let you know of trust how it happened. ” 5) Most complex stage. 3 rd order interpretation. The researchers draw together a narrative encompassing all themes. Process dependant on judgement of researchers

Inclusion criteria 1) Participants were a non-paid caregiver of an individual reported to have LD and challenging behaviour. Included those with LD and an additional diagnosis such as ASD. 2) The interview included information about the received services for the family member with CB. 3) No age limit 4) Study based on qualitative methodology, and include supporting verbatim quotes from caregivers

Demographics - Caregivers 17 studies 11 conducted in the UK, four in the USA, one in Canada, and one in Norway. One study gave no demographic information at all. Caregivers 391 participated 217 caregivers (relationship unknown) 140 mothers 26 fathers 8 ’ others ’ Age range- 27-78 years (based on just 6 studies)

Demographics – family member with LD and CB Information available in 14/17 studies only 370 family members with LD 153 male, 69 female, rest not specified Were between 2 and 38 years old Permanent residence – data on 248 people only 171 in family home 42 in residential schools 16 in residential support/facility 19 in ‘ other ’ Just five studies looked at type of challenging behaviour 79% aggressive behaviour 37% destructive behaviour 25% in self-injurious behaviour Note: many had two or more types of CB

How many had an ASD? • We can ’ t know for sure.. • 7/17 studies reported diagnosis ( n =173) • Of these, 51% had an ASD • 24% of whole sample – probably an underestimate

Five themes 1) Love 2) Altered identity 3) Crisis management 4) Support is not just “ challenging behaviour ” services 5) The future: Low expectations, high hopes

Theme 1: Love (1) For such a fundamental aspect of caregiving, love for their family member was only explored in one study. “My heart is always where he is… I feel closer to him than to anybody. ” But…love was evident throughout all the other studies, it underpinned much of the carers ’ talk “ At home we try to give Andrew a little bit of independence and privacy ” “ Rather than both of us get hurt, I ’ d sooner, rather he didn ’ t get seriously hurt. I ’ d sooner put myself in that position, I ’ m his mother. ”

Theme 1: Love (2) Wanting the best for their family member underpinned the frustration when services did not meet expectations. Getting good support went to the core of their role as carers. Carers mostly had holistic concerns such as • Dignity • Safety • Wanted their family member to be valued and and genuinely cared for

Theme 2: Altered identity (1) Whilst loving their family member, some did talk of a loss of their own identity “ I ’ m not allowed to be a person, I ’ m just Penny ’ s mum that cares for her 24 hours a day. ” “ Everything suffers because you haven ’ t got time for yourselves, any quality time because everything centres on time for the child ” For a few, the altered identity not always negative.. “ I ’m not worried…about what I’ m missing out because none of it, if I didn ’ t have him [son], none of it is worth anything anyway ”

Theme 2: Altered identity (2) A wider loss of social identity also – exacerbated by challenging behaviour and child growing older. “ She [mother] was in prison virtually because of his behavior, she couldn ’ t even go out in the garden without him misbehaving. We didn ’ t get any visitors, as they were too scared of him to come round. It was a lonely life. ” “ It ’ s growing up that has separated me with the outside world with Arturo, because you are limited to where you can go with him, because of his behavior problems. ”

Theme 2: Altered identity (3) • The love and strain may seem like two disparate themes, yet often occurred together • The strain arose from the consuming role of providing good and loving care to their family member, all day, every day.

Theme 3: Crisis Management Impact of an episode of challenging behaviour. Some got severely hurt – resulting in skin grafts. Emotional impact: “ It ’ s the most distressing thing possible to watch your child self harming. As a mother, it kills you. ” Restrictive interventions were used by some, only as a last resort, and after a lot of ethical considerations. Felt that crisis management would not be necessary if support services were adequate.

Theme 4: Support is not just “ challenging behaviour ” services (1) Carers ’ did not differentiate between specific ‘ challenging behaviour ’ support, and general support. All support needed to have understanding of challenging behaviour. Subtheme: Relationships with support services “ Banging your head against a brick wall ” “I feel that unless…make a nuisance…pester people to death, nothing is done ” “ [Arranging services is] a full time job in itself ”

Theme 4: Support is not just “ challenging behaviour ” services (2) Subtheme: Level of need exceeds level of service Carers ’ regularly encountered professionals who could not provide a good service. Resulted in a general distrust. “ You come and live my life for a day and see how you would put that intervention in, if it ’ s actually applicable and appropriate. ”

Theme 4: Support is not just “ challenging behaviour ” services (2) Subtheme: Level of need exceeds level of service Family members often excluded from services (temporarily and permanently) because staff not able to cope with challenging behaviour. “ School were phoning, saying ‘ can you come and pick him up? We can ’ t cope. I just think ‘ Yeah it ’ s me on my own here, you ’ ve got a whole team of people. ” Exclusion leaves carers having to cope at home for longer and with no additional support – common experience

Theme 4: Support is not just “ challenging behaviour ” services (3) Subtheme: Appreciation of good support services Positive comments about services tended to be sparse and peppered amongst much talk about disappointment with poor support services. In five studies, high levels of satisfaction reported- all were conducted by service provider. • Praised for high level of expertise and working alongside the family • Confidence in staff being able to cope with CB Almost exactly mirror areas carers ’ felt were lacking in support – these features core to experience of services – good or bad.