TABLILLAS-SÍLABA DE MADERA O CARTÓN GRUESO

Interpretation : Valued relationships refers to the intricacies in the relationships which were developed in the ID care setting. Relationships between the participants and the clients, between the clients themselves and between the participants and the kinsfolk of clients, develop over the years spent together. The stages of development of relationships are unique, and yet many of the stages share commonalities between residents. Valued relationships become more intimate and covert over time, to the extent that “bonds” are formed of varying degrees between carers and clients.

This sub-theme places high importance on the centrality of relationships and how these are formed and fostered within ID care. There are four categories:

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6.3.1 Nature of Relationships

Interpretation : Nature of relationships refers to the many nuances of the making of and the maintaining of relationships within the world of ID care. Such forming and maintaining of relationships can be, and often is, complex. Relationships can be of short, medium and long term duration, which in turn is influenced by the carer, those being cared for and the ethos of care within the organisation. Relationships between clients and participants in the ID setting were of a long-term duration.

Some participants had spent more time with the clients while they were in their care than their kinsfolk did as captured in the following quote:

.. our people are with us ten.. fifteen, twenty years .. you know.. like the families haven’t been with them that long .. you know .. I’ve known them from what.. three or four years of age .. 1.3.2

Nature of Relationships Like Family Bonds Friendship

In one service participants knew the clients across the different facilities of that service. They had started out as young professionals knowing the client as a child and now years later as an adult. They regarded it as growing-up together. Hence in one way, almost a sibling relationship was potentially established as captured in the following quote:

...would have grown up with him you know they saw him through his day service and the pre-school and saw him going through school and then back through the adult services and into the community residential so they.. a lot of people around would have grown up with… 1.2.3

It was often perceived that the supporting of a person with ID and the nature of the relationships between participants and client was ‘not work’ but ‘a way of life’. This is captured in the following quote:

.. it’s more to it than professional .. It’s your whole life .. it’s a different story .. it’s a different field that we’re working in .. the women are part of our life.. it’s a holistic .. we’re not treating an illness .. 1.3.5

Inevitably if staff and clients are going to be living together over many years then it may be expected that bonds will be made among them.

6.3.2 Bonds

Interpretation: Bonds refer to the many types of attachments which participants made with clients. They made closer relationships with some clients rather than others and they felt stronger bonds of attachment with some clients. Bonds may be invisible and do not need a “voice” to acknowledge their presence or existence. The onset of illness, or the diagnosis of dementia can enhance the “strength “ of the bonds. Bonds are not confined to the life of the client, but rather continue after death.

Shared humanity refers to the nuances inherent in ‘being human’. Human beings are part of one species. The power of reflection is unique to humans. Although some participants supported persons with ID, on occasion, they questioned as to whether these clients had the capacity to actively ‘reflect’. However, the participants acknowledged a certain bond with the person with ID which was beyond explanation. This bond resembles a spiritual experience intertwined with the experience of belonging

to the one human race. On occasion this was an invisible bond and expressed by one participant in the following quote:

.. even though I don’t understand why that can’t be and like how come that happened to X .. it doesn’t em .. I suppose I would have a notion that that’s the way he is and though I’m looking at his body that’s not the important thing .. and sometimes people get too hung up on the idea that .. his body is there and it just happens to be .. and I personally think that we happen to be spiritual beings .. and human experience. Some people think it’s the other way around. So I think he has the same contribution to life .. he’s as important as anybody else and just because you know his physical body can’t do this or because his physical body looks a certain way doesn’t personally bother me..3.5.1

Participants recognised the shared humanity that they experienced when working with persons across the spectrum of severity of ID. They found that communication happened at an affective level and language was not necessary in the relationship. This aspect of their work was meaningful as demonstrated below:

... people with an ID don’t decide I’m going to be nasty to you or make your day awkward. It’s very much they’re so thankful for what you do for them. The level of communication can be at a feeling base. It’s not just when somebody says thanks because sometimes they’re not able to say it .... I like the approach of caring for somebody who doesn’t have the words. Like some people say when you work in a client group would you not like to get feedback? It’s basic again and it is nice to have a conversation but you can still talk to somebody even if they can’t hear you .. even if they can’t talk back…. 3.1.5

Language was not a necessity and participants did not always know whether clients understood the situation. For example, when a participant moved on to another service or left a particular part of the service to work in another area. However, the special bond they had with the client would be deeply renewed with the client if they went back to visit the client and s/he reacted to him/her personally with a smile or some eye contact. This typified a particular bond between client and carer. The most vivid descriptions were when they said that irrespective of whether the client still recognised them when they had advanced dementia, the participants were delighted to think that the clients

eyes ‘lit up’ when the participants member visited them. The following quote captures this bond:

…sometimes they have a good connection with some other staff .. they mightn’t be their key worker … or sometimes it could be another staff member whom they are particularly fond of. Their eyes light up when they see them or something! 3.1.1

Participants spoke about their relationships in terms of their becoming attached to clients over time. It appeared that such attachments could be quite significant both to the participants and to the clients. As the person was declining with dementia s/he required more personal and intimate support which increased the time spent in each other’s company. Participants spoke about the difficulty of breaking this bond of attachment. In a situation where the person is deteriorating cognitively the participants appeared to be striving hard to maintain the bond between them on a very personal level rather than on a professional level. The emotional challenge on a personal level when the relationship changes between participants and clients is evident in the following quote:

You live with them practically.. Because we know them so long It is, they’re part of your family in a way.. It’s not a work relationship, it’s I know this person this number of years, you can’t, I mean you’d want to be ice cold to be able to detach yourself. 10.1.2

Furthermore, participants identified that they also had bonds of attachment with the kinsfolk of the clients and that these bonds are important to recognise in the ID setting. The following quote captures this point:

There is much more attachment there. Much more attachment with the families and we need to be very mindful of that 7.1.1

It was becoming apparent very early on in the interviews that participants considered themselves to be supporting their clients within family-like philosophies of care.

6.3.4 Like Family

Interpretation: ‘Like family’ constitutes all of the complexities which are inherent in family dynamics which are shaped by many factors. It embraces one’s being with the person ‘24/7’ for many years. It includes having ups and downs, good days and bad

days with moods, arguments, falling out of favour, kissing, making-up and loving again after such events.

Some examples of ‘being like family’ were when participants included clients in their own family circle at special family events, almost like an older sister or an auntie figure. The following quote demonstrates this:

.. Like a lot of the patients like are here for years, and you are the only one like … I suppose you are like their family to some of them.. one lady .. she came to my wedding, she’s like a family member 12.1.1

It is evident from the above that when participants referred to themselves as ‘family’ that they readily interchanged the notion that they were part of the client’s family and the client was part of theirs. Indeed many stories were related outside of the interviews of the many Christmases or other occasions when a participant took a client home to their own family home.

Participants made the point that not only are they working with them but indeed they are living with them in a family context and in a family setting. This referred to living in a community house where there was one staff member and four to five residents comprising a family unit and operated like any family in the community. They lived as independently as possible like a family in every other house in that community. This routine of family life is captured in the following quote:

…maybe that’s a family situation you know not everybody always gets on in a house you know so you have your differences and whatever. But I think the common bond is there that they all have been together for so long and they are comfortable in each other’s company and you know they can have their quite times and whatever. 3.12.8

A few participants grappled with the notion of family versus paid carer in the lives of clients especially when talking about clients who did not have kinsfolk. These participants believed that although they were paid carers they needed to be something more to these clients. The following quote demonstrates this:

.. but we are paid to be here .. to a lot of them here ..you are all they’ve got. You really are, some of them are blessed to have family and visitors and stuff

and others aren’t and its them that you know, you need everything you’ve got .. out of you for them. 1.2.1

Participants in the long established ID services especially considered that they knew the clients better than their kinsfolk did, because they have had more contact on a day-to- day basis than many of those family members. Participants across all sites acknowledged that families ultimately had the legal right to make decisions regarding the person’s welfare and health care but on occasion considered that they ought to have some input in this decision making. They considered that they knew the client better and therefore were more aware of the person’s wishes, likes and dislikes. The following quote below was made by a participant who knew that a lady loved her food but in a recent hospitalisation her kinsfolk made the decision to have a per-cutaneous endoscopic gastrostomy tube (PEG) inserted.

Although sometimes you wonder should staff still have some kind of say because I mean if you’ve been 20 something years with a client and you know them fairly well, you probably see them a hell of a lot more than their family ever did. 10.1.1

That participant experienced great distress that when the lady was home again with the ID service, they could no longer feed her orally and watch her delight in savouring the taste of food she loved so much – ice cream. Maybe this is akin to the situation of decision-making within a dysfunctional family context where siblings may not agree on the best course of action for a person who is declining with dementia.

Participants also related ‘like family’ within the extended family unit, i.e. that they had a familial relationship with the client and with the client’s own kinsfolk which reflected that ‘extended family’. Furthermore, an important element in the ‘like family’ concept is the context of care for the person with ID and dementia. Participants explicitly wanted to clarify the difference between their supporting of a person in an ID setting versus the supporting of someone in another health care setting. The following quote is from a participant in an ID service where clients are younger and have transferred in from their own family home. Their kinsfolk are very much included in their day-to-day activities.

.. The relationship that you’ve had with the service user and also the relationship you’ve had with the family.. because it’s not like a general hospital where you have .. or a nursing home. There’s a lot of involvement here .. it’s twenty-four seven this place is open – now we seldom have visitors at night except there’s .. It’s very much a family here still .. no matter what way you look upon it.. 2.1.1

While participants reflected on the similarities between different family structures, they also thought about the internal relationship within their family unit of care. They debated whether a hierarchy existed in the family they formed. Some participants reported that informal hierarchies existed in relation to how the clients perceived the roles of nurses and carers. The following quote demonstrates this:

I suppose .. it’s supposed to be not hierarchical.. but it wouldn't always be like that… the clients would always, like if the clients need to go to the toilet they would ask the care staff, they would wait, they are very like they wouldn't ever ask a nurse. They’d be like that.3.12.1

The notion of whether nurses were nurses or family was summed up nicely when one participant described her role in the following quote:

I suppose you feel appreciated more, you are not just a nurse … and you are providing something, a huge part of their life, not just from a nursing point of view. You are providing a full world for them like you know … It’s not just the clinical nurse, you are not just the number like, I think you are more like a family/nurse.3.3.10

That participant looked very satisfied when she coined the term family/nurse. It emphasised the fact that there exists a familial bond first and a practitioner with a skill set as second to that in the relationship between client and nurse.

Some participants felt that the relationship between client and nurse/carer was akin to a parent-child relationship where the participant was the parent figure. The following quote demonstrates this:

you have the parent role with it definitely, without a doubt. Because you are, you are involved in all parts of their life you know. There will be good times and

bad times everything you know the upsets everything, so you really are, you are in the parent, you are fulfilling that parent role for them definitely. 3.7.1

On the other hand some participants had mixed reactions as to whether they had a parent-child or child-parent relationship with clients. The complexity of this situation within the relationship is captured with this quote:

… I would see them more like a mother figure than me as the mother figure. And I would often say that and any of them that would have no family I'd always say aren’t you like my granny, won’t you mind me. And they like that sense of oh yeah you know they’ll mind me because they have the mother instinct, everyone of them and you can see that. So they would see me as the child even though they know that I'm the boss. So there’s that sense of it. But I'd never see me as the mother figure. 3.10.1

There were many complexities with this notion of being ‘like family’. Participants in the ID services which were established many years ago referred more frequently to themselves as ‘like family’ than participants from the more recently established ID services. In the older established services, the clients were of an older population and there was less kinsfolk involvement in a general sense for a variety of reasons.

Participants felt that they were contradicting themselves because on the one hand they felt that they were not ‘family’ because to be ‘family’ they would be more emotionally involved with the clients; on the other hand they could not avoid being emotionally involved with the clients and therefore they felt they were part of a ‘family’ unit. The following quote captures this point:

I suppose I think as I said earlier when you are working with somebody for so long you know you are actually, you are, you are part of their family really in a sense. I know I keep saying okay we are not, you know, not supposed to be seen as overly emotionally involved and everything. 3.12.8

The notion that they behaved ‘like a family’ and also like ‘friends’ was articulated particularly in the community residential setting where the numbers were smaller. This is captured in the following quote:

… eh, I suppose going back to the family bit, we are actually like a family here