What do relatives experience when supporting someone in Early Psychosis? A qualitative, focus group study. Laura Wainwright

REACT Relatives’ Education And Coping Toolkit

Authors Laura Wainwright – Fiona Lobban David Glentworth (GMW) Ros Bentley - Relative Gillian Haddock (Manchester University) & the REACT team

Phase 1 Systematic review “what works?” Focus Groups “what are people saying they need?” Focus Groups “what are people saying they need?” “Expert” opinion The Toolkit Intervention Reference Group CBT principles -understanding is key -personalised -build on existing strategies -self as agent of change -recovery focussed

Participants Recruited from; NHS Early Intervention Services Making Space Other agencies

Methodology Thematic Analysis (Braun and Clarke, 2006) Team of 5 researchers – 2 clinical academics – A nurse therapist – An academic – A parent of an adult with psychosis

Results 4 themes were extracted from the data: 1.Psychosis from the relatives’ perspective 2.The relatives’ fight with the mental health ‘system’. 3.Is anybody listening? Does anyone understand? 4.Relatives’ coping

1. Psychosis from the relatives’ perspective “I mean the name- the name itself is frightening because...when you say all this horrible thing they say psychopath” (42 B2) “you don’t know whether it’s just them growing up erm sort of erm juvenile tantrums or whether it is part of the illness, and I think as we’ve said, if some guidelines were down you poss think ohhh erm you know notice on different things perhaps, erm that that’s what I think anyway” (211 BP1)

PS5:“someone explained to me they said you’ve got to imagine two people shouting in each ear” PS4:“well two or three” PS5:“two or three talking to you and then you wonder why when you’re talking their not listening to you coz they are so occupied by listening to these other voices” PS2:“twenty four hours a day” (415 P2) “my son was off school for like, ten months and I was off work because he was under the a- couldn’t be left on his own you know, and I was off work for like the same amount of time, and I just lost my own confidence, me own self esteem, me own- and I just thought oh- and I just didn’t have the energy to talk to people” (204 B2)

2. The relatives’ fight with the mental health ‘system’. “...but at the time the patient doesn’t understand it theirself never mind want to discuss it with their carers or their parents so we found we were isolated” (336 P2) “yeh but they’re only allowed to be with them for so long and that’s a bit scary because they’ve become like your...they’re your comfort blanket as well as the person that’s ill really, they’re your support you know that you can if things are that bad i know we can ring em and have a quiet word” (580 B1)

“we actually got a phone call from one of the crisis team who says “oh you might be worthwhile kind of having a look in his bedroom while your- while he’s not in because he’s said he’s got some things in his bedroom” we went under the mattress there was a hammer, axe, screwdrivers” (387 P2) “he’s obviously never been in a situation like you then has he you know with a situation with somebody that they love so dearly you know under being in a psychotic situation and having that responsibility and when you’ve never been in that situation you’ve no idea what it does feel like it’s err just a text book case really isn’t it for them” (46 T1)

“you have to fight ‘cause they want to send them home with you, would you be able to cope with him tonight? I don’t know! I don’t know if i can cope with him!” (220 B1) “yes and I used to hear erm nursing staff speak about relatives and you know one comment was erm well no wonder he’s ill look at the state of his mother [group gasp] but they don’t seem to realise that the mothers in that state because she’s been trying to cope [group agreement]” (626 BP1) “one of the GPs said oh there's people wandering all round sane having delusions there's nothing to it don't worry about it” (37 T1)

3. Is anybody listening? Does anyone understand? “Is it something we have done in bringing up our children?” (160 P1) “have we not been good parents?” (160 P1) “the woman psychiatrist ……said that I needed to go and see a Relate counsellor because it was all my fault” (599 BP1) “it was basically, what have you done to your son then for him to behave like this” (605 BP1)

“….this nastiness and hostility, as soon as you walk in the room and talk to them and you think hang on a minute, my son daughter, whoever is ill. I’m just trying to get them help they need and all you want to do …is point the finger of blame and I think this attitude needs stamping out.” (789 BP1) but you do need the support from your employer (238 P1) “... a lot of it is educating people in general, even your own family. I’ve only got one sister and she was scared of of- I wanted her to spend time with him on his own and she “oh err I’m not sure about that.” but why?! “(274 B2)

4. Relatives’ coping “It was all about talking to other people and saying oh right yeah and then realising that you weren’t’ necessarily to blame“ (844, BP1) “If you don’t have a sense of humour, you would be in hospital yourself because some of the stress you go through is unbelievable” (175, BP2) “You gain more information, useful information from other people who have experienced it than you do from facts and figures” (256, P2)

…this girl came once a week for 3 or 4 weeks and she was sort of counselling me and saying we could send you away for a weekend’s holiday and we could do this and we could do that and we could do the other and they booked me in for a reflexology and I went about a month ago and it was absolutely great (121, T2)

Implications and take home message Education for the general population Recognition of impact on relatives Offering support for relatives - options Improvement of CPA process to involve relatives where possible Clear information about psychosis and processes by which services operate

This paper presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number RfPB PB-PG ). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.