Background
Methods
Ethics statement
Design
Participants
n% | |
---|---|
Age - mean(σX) | 47.36 (13.40) |
Diagnosis | |
BD I | 9 (82) |
BD II | 1 (9.09) |
Schizoaffective Disorder (Bipolar) | 1 (9.09) |
Age at first mood disorder diagnosis - mean(σX) | 27.18 (8.68) |
Age at diagnosis of bipolar disorder - mean(σX) | 34.91 (12.05) |
Number of previous episodes of depression | |
1-6 | 5 (45.45) |
7-11 | 1 (9.09) |
12-29 | 1 (9.09) |
≥30 | 4 (36.36) |
Number of previous episodes of hypo/mania | |
1-6 | 7 (63.64) |
7-11 | 2 (18.18) |
12-29 | 1 (9.09) |
≥30 | 1 (9.09) |
Number of previous hospitalisation | |
0 | 2 (18.18) |
1-6 | 8 (72.73) |
7-11 | 1 (9.09) |
Highest level of education | |
Secondary | 1 (9.09) |
Further | 5 (45.45) |
Higher | 5 (45.45) |
Employment status | |
P/T | 2 (18.18) |
Retired | 2 (18.18) |
Voluntary | 2 (18.18) |
Unemployed | 5 (45.45) |
Gender | |
Female | 6 (54.55) |
Male | 5 (45.45) |
Ethnic origin | |
White British | 11 (100) |
Marital Status | |
Single | 6 (54.55) |
Married | 3 (27.27) |
Divorced | 2 (18.18) |
Living arrangements | |
Partner only | 2 (18.18) |
Alone | 7 (63.64) |
Children only | 1 (9.09) |
Parent/s only | 1 (9.09) |
Indices of Deprivation by postcode 2010* | |
lower quartile (least deprived) | 3 (27.27) |
mid low quartile | 2 (18.18) |
median | 1 (9.09) |
mid upper quartile | 2 (18.18) |
upper quartile (most deprived) | 3 (27.27) |
IQR** | 28.248 |
Religion or belief | |
Buddhism | 1 (9.09) |
Christianity | 5 (45.45) |
None | 3 (27.27) |
Agnostic | 2 (18.18) |
n% | ||
---|---|---|
Relatives | HPs | |
Age - mean(σX) | 60.08 (8.43) | 43.17 (8.82) |
Highest level of education | ||
Secondary | 4 (33.33) | 0 |
Further | 4 (33.33) | 0 |
Higher | 4 (33.33) | 12 (100) |
Employment status | ||
FT | 2 (16.67) | 8 (66.67) |
P/T | 4 (33.33) | 4 (33.33) |
Retired | 6 (50) | 0 |
Gender | ||
Female | 7 (58.33) | 7 (58.33) |
Male | 5 (41.67) | 5 (41.67) |
Ethnic origin | ||
White British | 11 (91.67) | 11 (91.67) |
White any other | 1 (8.33) | 0 |
Indian | 0 | 1 (8.33) |
Marital Status | ||
Single | 1 (8.33) | 1 (8.33) |
Married | 10 (83.33) | 7 (58.33) |
Cohabiting | 1 (8.33) | 1 (8.33) |
Separated | 0 | 1 (8.33) |
Living arrangements | ||
Partner only | 9 (75) | 5 (41.67) |
Partner plus children | 1 (8.33) | 5 (41.67) |
Alone | 2 (16.67) | 1 (8.33) |
Children only | 0 | 1 (8.33) |
Indices of Deprivation by postcode 2010* | ||
lower quartile (least deprived) | 3 (25) | 3 (25) |
mid low quartile | 3 (25) | 3 (25) |
mid upper quartile | 4 (33.33) | 3 (25) |
upper quartile (most deprived) | 2 (16.67) | 3 (25) |
IQR** | 3.41 | 21.5 |
Religion or belief | ||
Atheism | 1 (8.33) | 6 (50) |
Buddhism | 0 | 1 (8.33) |
Christianity | 8 (66.67) | 3 (25) |
Church of England | 1 (8.33) | 1 (8.33) |
Hinduism | 0 | 1 (8.33) |
None | 2 (16.67) | 0 |
Procedure
Analysis
Results
Pre-existing worldviews
I think a lot of it [relatives’ exclusion] is from the attitudes by social services and by medical people about following agendas and not wanting someone tricking them up and change the direction of things (Relative).I think this is a cultural thing, it is very difficult to accept, but some doctors don’t like to be told [what to do] (SU).
[HPs] often have a formulation of the person’s difficulties that involves the families and how they treated the person badly (HP).
There is a cultural positioning of problems within a person, as a psychiatric medical tradition positioning problems in a person (HP).I’d rather not be there, I think they [relatives] should have time for themselves because… it’s not about me, is it? [It] is about other people as well (SU).
Relatives’ involvement is natural. It just happens, most of people they just do it naturally, they care for the person who are related to. So when the person’s health state changes, they do something to try to help, to try to rectify the condition. (…) Families generally have a natural response to that; they try to help, (…) so there is nothing you can do really to stop that (HP).
It is some learning exercise between all of us. But I think, it’s when this triangle is made firmly at the beginning, at the very beginning and works on and, and everybody listens and learns. (…) As service users are crucial in this, we’ve got to want to learn, we’ve got to want to get better, we’ve got to learn to manage, if we are unwilling to learn that’s a sadder place to live (SU).
Quality of relationships and communication
There can be a competitive dynamic about who can look after the patient best. Is it the family or is it us? (HP).[HPs] are the knowledge of mental illness but we [relatives] are the practical side… you know, we are the inside knowledge (Relative).
When I was in hospital, I requested the care coordinator didn’t contact my mother, because I thought she would stress out (SU).
There needs to be a clear understanding on the part of HPs, a sensitivity to the kind of the words used. They could be disempowering kind of words, or expert kind of words (…) anything that can be patronizing, especially when the carers are coming from a position of, you know, actually I’ve got the richness of experience of that, because I live with the person (HP).
We’re talking, talking, talking but we can’t do anything about it and I think they [HPs] find that difficult too because they feel impotent but they can’t do what they want to do, they can’t give a service that they want to give (Relative).
At the moment my daughter would be very very happy because we’re involved and when she is in a high state, [she] doesn’t want to know (Relative).The question mark for me [SU] is whether SUs should have that right to state that they wanted to have their brothers excluded from communications especially when we are non-compos mentis (SU).
I only think they [relatives] need the communication with the HPs, I don’t think they need any more support than that (Relative).Lack of communication with the professionals and the carers is a big, big issue and not being listened to as a carer (Relative).
The relationship with HPs is beyond fluid. It’s sort of ridiculous sometimes, (…) because they [relatives] want the consistency, they want to be dealing with somebody that they know, that they trust, that get consistent information from (HP).
You have to be willing not to being defensive and really open to hearing criticism and acknowledging that something is around you, you can’t control in other ways (HP).We should stop being paternalistic towards relatives by assuming that this information would be too painful (HP).
[HPs can say] It is ok for you to be angry. I understand you have had bad experiences. And then just giving them [relatives] time to ventilate really (HP).
Staff potentially use [confidentiality] as an excuse (HP).We hide behind the confidentiality thing sometimes because it’s complicated, yeah? If someone wants to talk to you, you’re worried about confidentiality, you then have to end the conversation, you have to go and find the SU, you have to get the SU’s consent (HP).[HPs] are frightened of confidentiality; they are frightened that the clients will not like it if you try to share information about them with other people, including the carers (HP).
Carers can excessively monitor, so I have people say, so we’re not allowed to enjoy ourselves, we can’t be happy, we can’t sit home and watch TV and burst on laughing because the family will go, oh what’s wrong? (SU).
Structural impediments
I think there is an institutionalised sort of resistance over other people’s involvement (Relative).[Managers] force staff to do things when (…) it relates to kind of payment by results, or risk stuff that can show up in a newspaper. But when it comes to family work and ideas about family work, they go, hmmm, oh yeah! It’d be nice if the staff start to use this (…) that’s reckless because what they need to do is just stronger leadership management (HP).We’ve got too many demands upon people (…). So if I am saying to you, right, you’ve got to do some family therapy. The manager says to you, you’ve got to do your fire lecture. And I need the fire lecture by the weekend. You’ve got to do the family therapy later because you think I’ve got 2 and half years to do this. But of course by next week (…) it would be something else, (…) and it would be a new file that we need you to take. And then send it to me into 2 h. So I think a lot of these pressures of overwhelming numbers of requirements impair people’s willingness and ability to do stuff (HP).
I take it [Carer’s Assessment] along and say would [you] like to do the form? And they [relatives] look at it and say that’s got nothing to do with my needs (HP).
We get criticized that our contacts are not as high as they should be. But their choice of how they’ve chosen to measure contacts is not in 20 min segments. It’s just a pure contact. So if I phone you up and said I will be coming late for our appointment today, that could count as a contact. Equally, I could spend 3 h with you and all of your family… that’s one contact (HP).
Beyond 5 o’clock the whole medical team shuts down (Relative)It’s not very easy to get an appointment after 5 o’clock either with care coordinator, or to meet a psychiatrist, or to meet a psychologist or during weekend (HP).
Some top down recognition that [involving relatives] is part of your job and not an add-on, is very helpful in enabling you to prioritize it (…) whether that is in your supervision or operational approach protocols (HP).
But if it [Act] is not backed up with cash then it crawls (…). So it’s all inspirational rather than implementational. If all the relatives and carers were thrown out of town, the whole country would be absolutely [profanity] and we would have banking crisis every year (HP).
When you’ve been defensive or concerned, or complaints have been expressed, you do need to talk it through with one you feel like they’ve got your back a bit really, as a practitioner. You might not have done anything wrong, but sometimes you have done stuff wrong. You have made a bit of a cock-up and you need to be able to access someone to talk that through (HP).
There are 3 things that obstacle (sic) people doing stuff: hill, will and skill. ‘Skill’ is gonna be a part, people’s gonna have basic communication skills, some basic group management skills and basic educational skills and the ability to explain themselves to families (…). ‘Will’ is about, do they believe that it’s of some importance? (…) they would be some in the health service who don’t believe that it’s the parents’ business (…). The other thing is the ‘hill’, which is just the ‘but’. In an organization like the NHS there are far too many barriers that impose in somebody’s abilities, the requirements of the organization as opposed to the requirements of the task (HP).