‘IT’S US THAT CHANGE’ EXPERIENCES OF FAMILIES

RECEIVING INPUT FROM CAMHS LEARNING DISABILITY INTENSIVE

TREATMENT SERVICE

Anna TrejnowskaDr Fleur Michelle CoiffaitDr Helen Downie

INTRODUCTION

Caring for a child with LD – increased stress & physical health problems (Gallagher & Whiteley, 2012)

The need for in-patient services for young people with LD not adequately met (Wright, Williams & Sykes, 2010)

Importance of interventions being delivered at home (Chilvers et al., 2013)

INTENSIVE TREATMENT SERVICE

• Aims:• Avoid inappropriate admissions• Allow young people to stay with their families

• Staffing:– 1 wte Senior Charge Nurse– 1 wte Clinical Psychologist– 2 wte Charge Nurses– 5 wte Band 5 Nurses– 5 wte Band 3 Community Support Workers– 0.5 wte Speech and Language Therapist– 0.5 wte Occupational Therapist– 0.5 wte Specialty Doctor

INTENSIVE TREATMENT SERVICEJanuary 2012 – July 2013

21 children referred

Mean age at referral

11.8 years (range 2 - 16)

Gender 17 boys & 4 girls

Level of LD 15 Severe LD, 5 moderate LD, 1 GDD

ASD 16 have ASD in addition to LD

Mean number of months of ITS involvement

8.4 (range 1.8 – 15.9)

Service provides: Assessment Functions of

behaviours Hands on intervention Training/coaching of

parents and staff Cooperation with social

work, education and voluntary sector

Ψ input often continues

PRESENT STUDY

Semi-structured interviews with two families Both boys have severe LD, autism and a

history of significant challenging behaviours, very little meaningful language

Ben: 13yo, only child, career changes, depression Biting, hitting out, pushing, pulling hair, crying,

screaming, poor sleep pattern, no sense of danger Stephen: 13yo, single mum & sister, divorce

due to difficulties caring Self-care at 3:0-3:2 age equivalence Other skills at 2:0-2:11 age equivalence

RESULTS

Five main themes1. Impact of caring for a child with LD2. Apprehension and anxiety about service3. Relationship with the team4. How the intervention works5. What happens after – Follow-up

IMPACT OF CARING FOR A CHILD WITH LD

• Fear and aggression• ‘I was becoming frightened of own son, (…) I was

scared of him’• Lack of confidence, emotional impact

• ‘We do so much for Ben and we love Ben, we do, to death. And to have your son suddenly turned round and start showing this aggressive behaviour towards you, it really did knock my confidence.’

• Lack of connection with the child• ‘(…) we were really, firefighting, oh it was terrible. We

were like on different planet shall I say.’• Isolation from support networks

APPREHENSION AND ANXIETY ABOUT SERVICE

Low expectations and scepticism ‘To be honest? We didn’t think it would work. Huge

respect for [the team], we knew [them] for a long time (…), but they were saying things – fantasy land. (…)We thought ‘it’s not gonna happen, it’s not gonna happen. (…) we’re going to turn world upside down.’

Worries about parental competence being questioned ‘who do those people think they are? (…) do they think

they know our son better than we do?’ ‚… as a parent, and parent who’s had Stephen, you

know – he’s 13, and it’s been a long hard road. You’re a bit sort of, yeah, you know, can they help? Will that work? You know, if I can’t help my son nobody else will.’

RELATIONSHIP WITH THE TEAM

• Team seen as genuine, non-judgemental, • Not scared of the child, relaxed and confident

• ‘It was a social thing but at the same time they were doing things that fitted in with his mind-set. And so all of a sudden he feels comfortable and calm. ‚At last someone who gets what I need. And so I’m looking forward to it.’

• ‘So it was actually quite nice to have somebody here who wasn’t looking at him going ‘he’s totally nuts’, You know, they weren’t judging him. They liked Stephen. And I’ve never really had that.’

HOW THE INTERVENTION WORKS

• Improved communication and relationship with child• ‘Cause I feel the whole experience of what the team did

has given us a happier life. Has brought us closer to our son, that’s a key element actually. It made us more complete as a family.’

• Improved confidence• ‘As if ‘mum you’re getting this’. At one point he looked

right into my eyes, which is very rare for Ben, and I just felt overwhelmed by that. There was a connection there between the two of us. It was lovely. I was getting this closeness and bondness which I had never had with my son before. And it was just because my confidence was growing. And I was in charge and he liked that.’

HOW THE INTERVENTION WORKS

Change in parental expectations and understanding ‘The biggest thing, and I said this to [the

psychologist], I think a while back is, they don’t train Ben at all. It’s not about Ben. It’s us. It’s us that change. It’s educating us. Ben’s Ben and will always be Ben. I think it’s how we deal with him. It’s how we interact with Ben, and he subsequently conforms to changes.’

WHAT HAPPENS AFTER – FOLLOW-UP

Set-back and the importance of perseverance and consistency in using the strategies • ‘Because he was getting good we thought we don’t

need the timeline anymore. (..) We wondered what’s going on? He’s going back to hitting out in the car, and throw things. And then – are you doing the timeline? Are you doing the structure? Actually no, we’re not.’

• ‘And then we started to tighten the structure and now it’s fine. So he needs it all the time. So a year down the line the feedback is that you can’t stop, you have to keep doing it. It’s easy. It is easy, it’s an ongoing. It’s important for him, to be able to communicate, to feel accepted, to have experiences.’

• Suggestion to revisit service for follow-up

CONCLUSION

• Intervention exceed the expectations• Behaviour management• Sense of connectedness• Integration in community

• Change in parental understanding• ‚Cause we were thinking seriously and talking

to social work, we’re going to have to think about residential. And that’s not something we ever wanted to contemplate but now we’re not contemplating it.’

THANK YOUANY QUESTIONS?

anna.trejnowska@nhslothian.scot.nhs.uk