Interpretation: One’s being supported in bereavement refers to any support which the staff received or did not receive when they were experiencing loss and grief in their work setting. Bereaved individuals describe how people avoid them or do not know how to give them eye contact after they have endured a loss of someone through death. Others report that some individuals say inappropriate things to them because they do not know what to say. Because they worked in a close environment with colleagues and clients it meant that participants were confronted with sharing the experience of the loss of the person together. Their working within a professional environment brought some expectation that grief was recognised and attempts made to provide bereavement
support to each other. However such support was not always received from upper levels within the organisation.
There were three categories.
8.4.1 Collegial Support
Interpretation: Collegial support refers to the support participants received from their fellow health and social care colleagues pre-death of a client, at the time of death or after a death occurred. Nurses and carers provided bereavement support to each other, to clients and to kinsfolk as already described. Such support was reciprocated among themselves when participants described how they supported each other and received support in their grief from colleagues.
Experienced nurse participants recognised the need to talk about their feelings of loss with colleagues if they could or with close family as evidenced in the following quote:
You have to know how to talk. I think it would be more healthy if people were more confident in how to talk to somebody. I talk to S (colleague/friend) and she talks to me. I can offload which we have done. You do with a close colleague, even with a family, a sister, we’ll talk together. A problem shared is a problem halved you know.3.3.1
The above quote highlights that participants working in these settings who are experiencing more deaths, realise that they need to self-care. These experienced participants also felt that although they support more junior or inexperienced staff, that they may not get support themselves within the workplace. One participant commented:
Yes. Yeh you feel as a nurse I feel personally that I’ve more personal supports because I know the more overall picture and I like the idea that I can give support then to other people... Now that may not happen the other way around. 3.5.1
Client Organisational
Participants explicitly recognised that care staff often are even more disenfranchised in not being supported with feelings of loss and grief when clients are transferred out.
Whereas with care staff em it’s just not there at all. I don’t think even the organisation is aware of the importance of having it (grief support) there for staff. Because it does affect them and in some cases/places depending on the area you would experience more like sort of loss in terms of even the person’s transferred or the person dying… … but staff who would be regarded as hardened staff were actually crying in a particular unit where somebody .. it was a unit for people with dual diagnosis and they felt the service didn’t have the support a person needed and the person was transferred down the country back down to his catchment area and staff – male staff – in particular were crying. But like there was nothing .. there was no supports there for staff and I think I hear that throughout the service. That was like sort of major.. 3.5.1
In some services the participants availed of bereavement support from the Pastoral Care staff in the service to support them in supporting peers and colleagues with loss after a person with dementia was transferred out of her community house back into residential care. The following quote captures this:
We got a lovely, N is our, she’s involved with bereavement counselling here and I organised for N to come down just after R left and we had like a little service, it was based on friendship and that you know because they are not with is you are still her friend you know (laughing) but anyway, so anyway N came down and it was really to let them know that she, she was still going to be there you know. But she wasn’t with us here. (crying)…3.8.1
The Specialist Palliative Care participants in particular recognised that the grief experienced by staff working in ID could resemble the grief of a ‘family member’ because of the usually long standing relationship with the client or service user. These specialist palliative care participants recognised that the ID staff therefore may need bereavement support.
.. staff in Intellectual disability would need that support more because of the nature of their relationship with the person .. they have had years together .. 9.1.1/2
However, participants resisted seeking formal bereavement support on occasions from within their own service. In one site it was stated that nurses, in particular, did not access bereavement support for themselves when clients died. Such bereavement support was available as a training course and counselling service but the participants continued to cope together in the local unit where the person died. This is evidenced in the following quote:
We have had specific bereavement training courses for both staff and clients within the organisation as a total ..but because most of the staff on the unit are nurses and nurse trained I think ..their preferred way is to use peer support for it, peer support to help them through with the grieving process. .. 7.1.1
8.4.2 Organisational support
Interpretation: Organisational support refers to the bereavement support received from anyone who was in senior management positions and who was seen to represent the organisation for which they worked at a macro-level. Participants across the sites in this research were working with relatively large organisations. Participants working within large organisations can potentially feel isolated from the headquarters geographically if it is far away or, psychologically, if they do not meet members of senior management on a regular basis. Furthermore, the participants work within a fairly autonomous role in the day to day care of persons with ID with their day beginning and ending in the presence of the client/s whom they support. In some ways, the staff can remain an invisible cog in the wheel of the success of the organisation while they expertly support the person with ID.
There was a sense of frustration on occasion when experienced participants perceived that management did not realise the impact of a death on staff in a unit. They were upset that management did not acknowledge the impact of the death and felt that it was just another person dies and now there is a bed available for someone else. A reaction is captured in the following quote:
.. we would, say N passed away, … ah thanks very much. And that’s the response you get…
The participants felt that the fact that they have considerably more involvement with the person in ID when they die than staff have in general settings, that this goes largely
unnoticed by the management personnel in the bigger organisation. Their intense involvement in planning and their being involved in all aspects of the funeral is an extension of their caring role when the person dies. In view of their bond of time together they felt personally bereaved but perceived that because their grieving is disenfranchised both within and outside of the ID setting, that they are not supported in their bereavement. This is evidenced in this quote:
..in a general hospital when someone dies and is gone they don’t have anything to do with them .. they don’t even know where Mr Mac in bed three has been buried or gone .. where we go to funerals .. we organise funerals .. organise the mass.. we organise everything .. and then you’re meant to go back to work and it’s all over and get on with your day .. 3.1.7
There were established formal bereavement counselling support available for clients which participants could avail of also should they wish to pursue it. However they perceived this bereavement support to be more for the clients as evidenced in the following quote:
.. certainly within the organisation there is an offer .. people are able to go for outside counselling .. it doesn’t happen within the unit .. nobody needs to know about it .. the service itself would promote a bereavement training course for staff to go on it if they want .. A lot of it would focus towards the service users and how they can cope with bereavement .. but there again there is the opportunities for staff ..1.5.1
In some services, in recognition of the increasing frequency of deaths of clients, there was formal bereavement training being developed. Participants were recognising that this would be an important part of professional development. The following quote demonstrates an example of this:
.. so of course there’s going to be more grief issues. I think this organisation is responding to that now and are more aware of it especially with the new booklet they’ve done up and the bereavement training sessions. I think they’re important that all the staff go on them. Certainly all the staff here need to go on them.. 3.1.1