Please note, results are based on perspectives from diverse informants. Informants included ‘high-level’ stakeholders (i.e. national-level policy, practice and civil society actors in social inclusion, health care or social care), service providers, and those with lived experience. To help contextualise challenges for effective SI, a brief outline of current SI activities across the five populations will be first presented.
Level and quality of service involvement
Findings suggest that overall, there is substantial SI happening with the groups, but this activity is not always of high quality, varies across populations, and does not sufficiently engage groups. Within the provider survey, 93 per cent of respondent organisations conducted SI of some form, with minimal differences in rates of activity across the groups. For some populations, such as those who use MH services, and the TR community, it was clear that there were long-standing examples of partnership approaches. For others, such as MMER communities, and those experiencing homelessness, SI was generally growing but embryonic. However, limitations were found in existing SI activities for all groups despite the high levels of activity. First, there was a concentration on less intensive SI: comment boxes or questionnaires were the most frequently reported means of SI (51%), followed by focus groups (41%) and membership of committees and boards (37%). Second, all study informants indicated there were was still a tendency towards more superficial engagement, with activities more likely to take place at the levels of ‘engaging’ (individuals express views and influence some decisions), ‘consulting’ (individuals invited to provide views in surveys/meetings) or ‘informing’ (telling individuals about a service), rather than ‘co-production’ and ‘co-design’ levels – the exception being MH and TR services, where co-production was found to be the most common level of engagement. While the potential of SI was recognised by national-level stakeholders, there was frustration around a lack of progress given investments made. Correspondingly, many LE participants had rarely or never been asked for their views, and if they had, their participation tended to be less involved (e.g. once-off, surveys).
Challenges
Five challenges were identified as impacting SI effectiveness for the five groups. Findings on each challenge are drawn from all study informants and data-collection strands: national stakeholder interviews; provider focus groups and survey; and lived-experience focus groups and interviews.
Leadership and commitment
Across all informant groups, but especially national-level stakeholders and providers, leadership and commitment were highlighted as key influences on SI for the populations. Although positive examples were discussed, participants were concerned about gaps and deficiencies. At the national strategic level, some stakeholders noted that systemic change was required. For many, this was about HSE and government leadership showing a commitment to SI, and leading the implementation of a well-considered strategic direction, as this stakeholder interviewee explains:
We need leaders in the health service who see the value of service user involvement…That it’s not just a concept, that it is something that is modelled and something that is practiced. And when…our colleagues who see something working for example, at national level, then they’re more likely to say well look we can try replicate that… and do it locally…(IN.SH.05Footnote 1)
Similarly, providers felt there was little meaningful high-level leadership, with some noting that the SI responsibility appeared to fall to smaller, on-the-ground organisations. Almost half of respondents (47%) reported that SI for the groups was not given adequate attention within national policy – with MMER (66%) and TR (75%) provider organisations highlighting this most. Forty-six per cent also disagreed that SI was sufficiently prioritised for the marginalised groups they serve within the HSE – an issue for those delivering MH services (61%) more than any others. While LE participants did not address specific deficiencies in policy, several individuals said that they didn’t feel considered by those higher up. This is illustrated by the following quote from a younger LE participant who had used child and adolescent mental health services:
Yeah, I just feel adolescents are sort of looked down upon sometimes, not all the time. It’s sort of like we’re not stupid, we’ve a lot to offer, we have a lot to say. Our opinions are valid as well. (FG.PWLE.MH.CA)
Stakeholders and providers felt strongly that buy-in at the regional (CHO) and local organisational level was critical to give SI visibility; to help create an ethos of SI; and to ensure SI is embedded within an organisation’s daily and strategic activities. Nevertheless, almost a quarter of respondents (23%) felt that the level of internal leadership was insufficient. This was more of an issue for those in MH (36%) and MMER services (41%). Focus group provider participants were more likely to draw attention to these issues, with many speaking about the absence of organisational support, resulting in tokenistic engagement. This attitude can be seen in the following quote from a service-provider in the drug and alcohol supports sector:
I suppose I’d like to see stronger leadership and funding to support this. And not service user involvement or engagement being just kind of the added thing to the agenda… if somebody else has time to do it. But it’s always kind of the soft option or the, you know, it’s the thing that you do when you’ve ticked every other box…(FG.SP.DA)
Several LE participants opined that some of the professional occupations that they engaged with neither valued their views, nor SI processes per se, like one man who had used mental health services for severe and enduring mental health challenges:
You’d have to challenge…this particular doctor, on his arrogance, because he is an arrogant man, and his theory is that ‘If I don’t think of it, it’s not going to be used.’…It has to be his idea… I don’t know whether he would see us as being fit to talk to him…(FG.PWLE.MH.SE)
Such experiences echoed the national stakeholders’ and providers’ accounts, where SI was described as being perceived by professions as a threat to traditional power dynamics:
So, there’s a kind of a tension there always, I guess, with professionals in terms of who knows more and who has the authority to say what should happen… And we saw it in terms of peer support, hugely… you know, some of the professions were hugely threatened at having peer support workers. (IN.SH.06)
Provider participants argued that SI should be built into service plans as it is too often relegated, restricted, or ring-fenced into a small number of activities. Providers also noted that engagement was often only assigned to a small team or an individual, and its existence often precarious and rarely sustainable, within organisational work-programmes.
Implementation and action
Implementation and action emerged as a dominant theme, incorporating a multifaceted set of issues -related to resources and training, measurement and accountability, and follow-through and impact- that detracted from effective involvement. All informants raised lack of SI implementation as a challenge, with many feeling that positive change was either not happening or not happening fast enough. Some described an endemic implementation deficit where plans were often not executed, damaging confidence in SI processes, as is illustrated by the following quote from a stakeholder interviewee:
…I think that that the lack of implementation, or I suppose slow implementation in some of those key areas…becomes a key challenge. Because if you have a number of consultative processes, which are exhaustive and that have key recommendations for implementation, but don’t happen. How do you ensure you know I suppose confidence in the system? …(IN.SH.08)
As this LE interviewee who was from a migrant background states, SI outcomes which are not implemented, do not generate meaningful change:
It’s useful if they do something about it or with this information. If it’s just data and…in a file, a paper file in a cabinet, that’s no use at all. (IN.PWLE.MM.07)
Three factors were thought to drive implementation challenges. First, in terms of resources and training, 69 per cent of provider respondents agreed that there was a lack of SI resources, with again a higher proportion of those providing MH (77%) and MMER (94%) services agreeing. Informants noted the importance of programme budgets for implementation, and they had specific ideas around how such budgets should be allocated. Stakeholders and providers were strongly focused on the need for dedicated staff to avoid overburdened workforces:
And the doing of good service user engagement takes time away from [service provision]. So, the challenge will be what doesn’t get done…If your resources are finite, you’re competing with the waiting list or the productivity. (IN.SH.09)
Adequate training investment was also flagged as critical, to assuage staff resistance, and to build inclusive relationships between providers and groups. Nonetheless, less than half of provider respondents stated that their organisation facilitated training. Finally, remuneration for LE participants was discussed as something which, when deficient or absent, could make them feel unappreciated, especially when substantive contributions of time and money are involved. The importance of this is illustrated by the following quote from a LE participant in who had used drug and alcohol services:
Probably money…. [would help]…I do a free service on a Thursday night on Zoom for [treatment centre]. I do a speaker talk and it’s no charity. I enjoy doing it and get a great benefit from it but there’s time you’re going down there and you’re on your own diesel and you’re driving down as well and you’re just thinking, ‘Fuck’s sake’, you know, selfishly enough. I shouldn’t be thinking like that but I’m a human…(IN.PWLE.DA.02)
Second, in terms of measurement and accountability, many informants stated that successful implementation must be driven by evidence. Stakeholders spoke about the need to demonstrate how SI generated improvements in outcomes:
… so engagement feels like the right thing to [do], it makes us all feel warm for doing it. But really, in terms of delivery of services, what has it done? … we do have to measure it as we go…and we have to know that it’s making a difference. (IN.SH.06)
Some argued that key performance indicators should be established to foster a culture of accountability and assessment. Otherwise, SI would not be truly prioritized as a sector wide agenda. Thirty-two per cent of provider respondents reported that SI evaluations were not conducted.
Third, the importance of SI activities generating follow-through impact was highlighted by all. However, many stakeholders and provider participants stated that SI was often beset by a lack of continuation and completion, with services rarely empowered or resourced to make changes based on the perspectives of PWLE. Some stakeholders suggested that this may be more prevalent in the HSE due to its scale and the difficulty in applying changes consistently. LE participants believed SI frequently had no impact with some pointing to long-standing consultation, with no obvious change. This attitude is made clear in the following exchange between two Travellers in a focus group discussion:
P1: … we have done this kind of [thing] over and over and over…
P3: … but there’s been research…that has shown the same barriers, the same causes, same triggers… What I’m getting at is, is there a need to swing this […] completely around on the services and say, ‘What are ye doing and what are ye not doing?’…like we’re the most over-researched group of people and I’m sick of it. (FG.PWLE.TR.DU)
Population capacities
All study informants recognised that the capacities of the five groups, and their life-course circumstances, needed specific consideration in SI. With respect to psychological readiness, some LE participants spoke about their on-going efforts to regain life stability, and about not feeling ready to participate – whether because they were unwell or were concentrating on their own recovery. The following quote is from a person who had experiencing sleeping rough in homelessness:
If you asked me, I wouldn’t get involved anyway, because…at the moment now, I wouldn’t be ready to talk to other people. I wouldn’t be able to give advice to help people or help me change anything. Because I’m just changing myself. I’m only getting a grip on my own life at the moment… (FG.PWLE.HO.RS)
LE participants also spoke about how accumulated exclusions and traumas can dissuade people from participating. Fifty-five per cent of provider respondents agreed that precarious conditions and exclusion amongst these groups could disrupt involvement, with those providing MMER (94%) and TR (88%) services more likely to agree. Furthermore, 73 per cent of providers, and many LE participants described how complex health issues can affect the abilities of some members of the populations to contribute, particularly in group settings. This is illustrated well by the following quote from an older man with a history of drug use and mental health challenges:
….there’s an awful lot of psychiatric problems… goes with the drugs. You know, you wake up full of… you know the anxiety!…. Well it’s a horrible thing for an addict, you know?… That your whole insides is like a bunch of butterflies, and you’re so nervous. And you’re not afraid of anybody in particular, but yet there’s an inside fear, you know, that needs to be sorted out before you can start to think [about talking to anyone] one-on-one. (FG.PWLE.DA.OO)
With respect to self-esteem, LE interviewees discussed how they or their peers may place little value on their own opinions and/or believe they are not ‘qualified’ to take part. Many of these participants described how they would feel especially nervous in engaging with those in positions of power, such as clinicians or other professionals. This low level of self-esteem was often attributed to their situations, for example being displaced, being in recovery, experiencing homelessness, or experiencing depression. To overcome these barriers, LE participants argued that it may also be appropriate to encourage family and/or keyworkers to support participants during SI processes. Moreover, it was suggested that boosting a participant’s confidence and lessening feelings of intimidation was essential, as can be seen in the following quote from a focus group participant who provides services to Travellers:
So, there is a need really to, I suppose, support that work more and to provide I suppose better… an understanding of why their voice is of equal if not more important at those meetings and for them to feel confident and have the confidence to participate fully in those settings I think is really, really important. (FG.SP.TR)
With respect to understandings of SI, LE participants highlighted that a lack of familiarity with SI and its key processes may mean that some individuals would be reluctant or under-prepared to take part in engagement. To counteract this, it was asserted that SI training, or at the very least a briefing on SI processes, should be provided to participants to allow them to understand their roles and responsibilities. However, some providers -like the one quoted below- also felt that these forms of supports can be too resource intensive, under current resource constraints:
… we would have people in recovery on our board, but we don’t have a specifically designated service user…because…there needs to be a lot of kinds of proprietary work done, there needs to be a lot of mentoring done, there needs to be a lot of development done with the service-user to…bring them to that space…. (FG.SP.DA)
Trust
Informants noted that trust was a key challenge upon which the success of SI for the five populations often hinged, with 53 per cent of provider respondents feeling that these groups were less likely to have confidence in SI processes.
This was in the first instance related to system structures. Service-provider and LE participants highlighted that there can be a lack of trust in the state, and in HSE services specifically – with those who use services sometimes slow to believe their participation is anything more than tokenism. Several national-level stakeholders and providers described how marginalized populations can perceive themselves to be powerless. This was particularly evident amongst MMER and TR groups, with some migrant participants being influenced by their experiences with their home-country institutions. This is explained well by the following quote from a Roma participant:
It’s very important to mention that when you have marginalised Roma community come in from Romania, Slovakia, and they come in from very bad conditions….It’s a totally new system for them. And it’s about building the trust… It’s the most important thing for them to understand that they can trust the HSE. (FG.PLWE.MM.RO)
Trust issues were also related to mistrust of individuals and in the interpersonal relationships within these systems. Several LE participants questioned the values and motivations of some professionals working in care services, such as the person quoted below who had experience of using drug and alcohol support services:
They’ll turn around and they’ll say they’ll listen to us. They hear us, but they’re not fucking listening. You know? They’re not doing anything… they’re in it for the money. Or they’re in it for a promotion to get more money, so they are. (FG.PWLE.DA.OO)
However, it was also clear that several LE participants felt the issues were broader, where they described having to continually open-up and ask for help because of upsetting situations, intensifying their sense of vulnerability. These experiences meant participants felt they were less likely to talk openly about their opinions or emotions in an SI situation. Such instances were exacerbated further by high staff turnover, as the following quote from a person experiencing homelessness illustrates:
She was my keyworker… But I really, really trusted her, you know? I had big trust in her. And then when she left, they were trying to assign all these different keyworkers… When you open up to someone then you have to open up to another person, then you have to open up to another person. Then when you move out of that place, you’ve to open up to five more people. (FG.PWLE.HO.SA)
In addition, trust issues were related to concerns about confidentiality and information misuse. Although some participants acknowledged that sensitive information was often provided in care settings, this was usually under privacy protections and/or helped to access needed services. In contrast, purported benefits of SI did not justify such disclosures. A greater concern was how being openly critical of a specific service might impede access to that service, with some members of the populations feeling their trust had been betrayed in the past, like the person experiencing homelessness who is quoted here:
They asked me to do an interview with [organisation name], right? I was like, what’s it for? Oh, a newsletter. Then I found out it’s for the accounts or something?… The lady printed out everything I said and I was high that day as well…. and I was like, fuck. The manager came and gave it to me and she was like: ‘Do you want to sign it?’ I was like, I thought this was anonymous… I said, ‘What is this for? Why are people lying to me?’ (FG.PWLE.HO.SA)
Finally, trust issues were related to fear and feelings of a lack of safety. Service-provider participants and LE interviewees highlighted how frightening it can be for people who have experienced threats to personal safety to speak-up. For some, these fears were based on experiences of harm, with the following quote, from a woman who had experienced sexual exploitation, illustrating this dynamic:
I’m struggling mentally really. My self-confidence is gone, I don’t have it at all. I don’t trust men. Even if a man looks at me, I don’t think that’s a single girl he may like, I’m just thinking everything what’s happening to me is written all over me or that’s what he wants to do. (IN.PWLE.MM.06)
Representation, stigma and discrimination
Challenges related to representation, stigma and discrimination emerged strongly within the research. For the five populations, past service experiences were used to highlight concerns that such challenges may feature within SI itself, or as cautions of broader system features that detracted from SI capacity to affect positive change.
Representation was a key concern for some groups, national stakeholders, and providers. This first related to the fundamental need to represent the populations due to long-standing marginalisation, wherein those included tended to be characteristically ‘mainstream’, as one LE Traveller participant highlighted:
…you’ll get the white, settled person answering [surveys]. That’s who normally answers them…you’ll get the same kind of people having the time to do that and the ability to do that. There’s challenges…If that form was sent out to my mother-in-law or any members of the family that couldn’t read and write and they’re not really understanding what it is, they wouldn’t do it. That’s just reality. (FG.PWLE.TR.DO)
A second more dominant concern related to the diversity of population sub-groups being overlooked. While 51 per cent of provider respondents reported difficulties in recruiting a diverse participant sample, stakeholders noted how problematic it is to only include ‘the usual suspects.’ Whether this reflected a lack of resources or a lack of understanding, its impact can be a dilution of difference. For others, such under-representation reflected a more pointed neglect of particular groups, or complex intersectional experiences.
All populations spoke about the prevalence of stigmatising processes that arose from negative beliefs based on circumstances or prescribed identities. Ethnic-based stereotyping was most prominent for the Traveller and Roma communities. However, other forms of stigmatisation were an issue for all groups, with people describing being spoken down to, and being seeing as lesser. One male interviewee experiencing homelessness described how a stigmatised attitude about his drug-use history resulted in damaging assumptions about a current health condition:
I got shingles one time living up in the park, I didn’t sleep for five nights. Took three seizures on [street name]. It comes up on that screen – heroin addict, methadone addict. ‘Ex’ doesn’t matter…they say: ‘Is there any pain anywhere else?’ I go, ‘I’m in awful pain here’, and they turn around and go, ‘Ah yeah’… they’re thinking: ‘You’re looking for fuckin’ opiates.’ (IN.PWLE.HO.05)
The normative nature of stigmatised attitudes could also be internalised. This was described by some -including the LE participant quoted below, who had used mental health services- as having manifest as a reluctance to seek support or accept a diagnosis or treatment:
I gradually stopped…[taking my medication]… I started skipping days …but I got really bad then and… my attitude towards anti-depressants was an unhealthy one and [my psychiatrist] was saying to me, ‘If you had a heart condition…you’d be on medication and you’d take that medication without question…’ (IN.PWLE.MH.04)
Experiences of being stigmatised or stereotyped meant participants were less likely to want to engage in a meaningful way in SI processes.
All informants discussed how the five groups can be treated in a discriminatory way, with a view that discriminatory experiences were commonplace. For those with intersecting experiences, or statuses, for example people in homelessness with a history of drug use or addiction (as the participant quoted below was), discrimination was more keenly felt:
[The food was] very, very poor and that’s in [temporary accommodation service]. I got food poisoning six times out of that food. I ended up in hospital six times…No, what they do, instead of putting the fresh dinners out, they’re putting the old dinners to the front and the fresh dinners to the back… because the way they look at it is you’re an ex-addict or you’re this or you’re that. (IN.PWLE.HO.04)
Discrimination experienced by different races or ethnicities was most often encountered as racism. For Roma individuals, it was felt that providers treated them poorly because of their ethnicity, particularly where English language proficiency was low. However, it was Traveller participants and their representatives who were most vocal about poor-quality engagement due to racism, for example all TR service organisations reported ‘fear of discrimination’ as the primary SI barrier in the survey. For individuals who experienced discrimination, the impacts were substantial, as the following quote illustrates:
…the discrimination that we face daily, if it’s going into a shopping centre, into a restaurant, into a pub. If it’s walking past a settled person on the street… The minute a Traveller opens his eyes in the morning and takes a foot into the outside world till the last foot he takes at night back inside his own door, he faces discrimination…you’re being looked down at. You’re being contradicted. You’re nearly put as a liar… There’s so many consequences that go on and go on and go on that we daily face, and it’s a constant daily struggle… (IN.PWLE.TR.05)
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