The low uptake of preventative services in disadvantaged communities is a continuing challenge to public health.1^–4 Families living in adverse conditions have high rates of ill-health and consequently are at greatest need of health and welfare services.1 5^–7 Paradoxically, these families have the poorest access to curative and preventative services.8^–10 Public health and primary care practitioners are involved in attempts to improve access to, and quality of, services in disadvantaged areas. National targets set for reducing inequalities in health and health care are couched in terms of “levelling up” – making faster improvements in the most disadvantaged areas relative to the rest of the population by 2010. The primary care trusts that constitute the so-called “Spearhead” group, which cover the most disadvantaged populations, are being held to account by the Department of Health for the progress they are making on this front.

A new initiative on poverty and social exclusion announced by the prime minister of the UK aims to provide support to the most disadvantaged families and intervene at an early stage.11 Proposed interventions include an intensified health visitor programme, parenting classes and help with alcohol and drug abuse.12 These plans follow the introduction of electronic child indexes under the Children Act 2004, which were intended to improve children’s access to universal and additional services and thus provide preventative, holistic services and early intervention for children in need. The context for the latest initiative is the growing focus on prevention of antisocial behaviour in later years and the view that “you can detect and predict the children and families likely to go wrong”.11 These initiatives also reflect an intensification of surveillance in society in general over the past 15 years,13 but with a particular focus on and subsequent intervention for the poorest members of society. While the focus on helping disadvantaged families has been welcomed, leading policy analysts and practitioners have warned of the need for extreme sensitivity: the implementation of such measures could stigmatise and alienate the people they are trying to help and even impede service uptake.14^–17 Against this background, our paper addresses some of the complexities and pitfalls encountered by health care providers in disadvantaged areas, but, crucially, it does so from the perspective of the disadvantaged households at whom these policies are aimed. Our study offers insights into their experiences of public services, seeking to understand what aspects of those encounters influence the intentions of disadvantaged households to seek support now and in the future.

METHODS

Grounded theory informed the design of this study.18 We sought a purposive sample of individuals with experience of material adversity (defined as living in a deprived area, on welfare benefits) (box 1) who could talk about using public services. We conducted field work in eight sites (sites A–H), providing a variety of geographical and service settings, and enabling us to avoid regional or service bias arising from any single context and thus enhancing the transferability of our findings (table 1). Potential participants were approached via non-statutory services. Most were introduced to the researcher by a professional, and most were invited to participate by the researcher. Very few were told about the study by other participants. No-one refused outright to participate, but four individuals who considered participating were not subsequently interviewed. They did not refuse explicitly, but rather failed to attend arranged interviews or cancelled.

We conducted in-depth interviews with 25 consenting adults living in deprived areas (table 1) either in a service setting, in their own home or, in one case, in a café. We asked participants to talk about their experiences of public services (such as Sure Start, social services, health services) and living in their neighbourhood. Participants were encouraged to talk about positive as well as negative experiences. Interviews were digitally recorded (with permission) where practicable, otherwise notes were taken. Experiences and views expressed during observations were also recorded in field notes. The study was approved by the Liverpool School of Tropical Medicine research ethics committee.

Line-by-line open coding of the transcripts and field notes was performed whereby segments of text were grouped into categories and subcategories using the constant comparative method. Axial coding was then conducted, using the paradigm model to make sense of relationships between categories. Atlas.ti (Scientific Software Development, Berlin), software for the storage, management, analysis and retrieval of qualitative data, aided this process. The analytical strategy and focus were discussed by all the authors and a consensus reached about the labels for emerging themes, the arrangement of themes into categories and subcategories and the relationships between those categories. We aimed to identify service features that undermine or buffer health and well-being and the conditions in which they arose. Our final interpretations were informed by our analysis of the dataset as a whole (data from interviews with clients and professionals and observational data) and by our reading of the literature. In this paper, we present findings on participants’ negative perceptions, specifically the perceived consequences of seeking help and health care. The names of participants have been changed to protect their anonymity.

RESULTS

A range of factors relating to participants’ experiences and perceptions influenced the take-up of services (box 2). Below, we report three interrelated themes that influenced participants’ uptake of services with potential consequences for health. These are illustrated using case studies (boxes 3–6). The cases were selected because they each encapsulate several themes and demonstrate the interplay between them, and not because the cases themselves were representative of the sample.

Perceived risks in using services

The prevailing view amongst participants was that encounters with public services were risky. First, participants expressed concern about the risk of losing resources, e.g. the reduction or withdrawal of social security benefits (site H). One mother described having to prove to services that her partner gave her food and nappies, not the money for these items, in order to protect her benefit entitlement (Becky).

Second, concern was expressed about the risk of being misunderstood or harshly judged. It was thought that services could take requests for help “the wrong way”, that is as an admission of failure to cope that might be used against them, rather than as a reason to provide help and support (site H). Participants considered that being in receipt of social security benefits and living on deprived housing estates meant that social welfare workers and others made negative assumptions about them.

Third, parents were particularly wary of social services due to a perceived risk of losing custody of their children. For some, this risk had become a reality with devastating consequences, “If [services] rip you apart they can’t stick it back together again” (Brenda). Subsequently participants such as Alison experienced feelings of immense desperation (box 3).

Finally, in their encounters with services, participants faced the risk of not receiving practical help or support. Participants reported that there is often “nothing constructive” (Ruby) that services can do to help. One father with a son who got into trouble with the police remarked how services were not preventative, “you have to do something wrong in order to get things like the youth worker” (Dave). Participants’ accounts highlighted how little practical support and help seems to be on offer to enable hard-pressed families to manage (box 3).

Rise in surveillance

Participants were increasingly aware of the expansion of surveillance in place of practical support, particularly in the disadvantaged communities where they lived. Some described living in fear of “being told on”, for example for cheating the benefits system (site H). Parents acutely felt such surveillance (box 4). Some surmised that the registration of families by their local Sure Start was simply about gathering information, especially as no services seemed to follow (site G). One mother commented that, “It’s difficult to [discipline children] because schools and parents are constantly watched and could be accused of abuse or neglect” (Georgette). Participants described encounters with welfare professionals who had information about them from other agencies, for example Sure Start staff revealing information which could only have been sourced from the Social Services department or community nurses (site G). Other participants expressed fear about confidentiality being broken and not having any power to do anything about it (site H). Although none of the participants described being referred to social services by Sure Start, several Sure Start workers admitted doing so.

Participants’ wariness of social services pervaded their perceptions of all public services, including health, because of the perceived risk of being referred to social services. Also, neighbours had referred some participants to social services, and family social workers confirmed that referrals from neighbours were quite common. Participants understood that this aspect of their social and physical location was intensifying and inescapable.

Adverse consequences

Coping by avoiding services

Participants generally indicated a deep-seated distrust of and disappointment with public services, especially social services, leading to the view: “avoid them in your life at all costs” (Tina). Where participants perceived public services as risky and surveillance as omnipresent, this affected their willingness to use public spaces and, consequently, their use of all kinds of services. Contact with services was often a last resort in desperate circumstances or uninvited (box 4). Residents of a deprived estate avoided contacting housing services about repairs and other issues because they were treated badly by staff and repairs went undone (site B). Participants with learning disabilities avoided using social services day centres because they were treated disrespectfully and their needs went unmet (site F). We found evidence of participants avoiding taking their children for health checks (box 5) and avoiding Sure Start premises and other public places (box 1), because these were perceived to be places where they could be negatively judged or referred to social services by neighbours or professionals.

Isolation and anxiety

As a consequence of their perceptions and their resulting avoidance behaviour, participants experienced isolation: not being able to “mix” with people socially and having “no-one to go to” (Brenda; box 5). Participants’ accounts reveal anxiety arising from the risks they associated with services and the expansion of surveillance. Parents expressed anxiety about their children’s behaviour in public places and about appearing to be neglectful of children (box 4). All participants carried the burden of having to give the right impression to services: about their income, their ability to cope, their capacity as parents, their children’s behaviour. Participants believed that it was unfair to have to live with this constant anxiety (site H).

DISCUSSION

Qualitative research has identified financial, social and cultural factors to account for families’ inhibited use of preventative and potentially supportive services.3 19 The perception of risk, including the risk of stigmatisation, negative judgement and inadequate help presented by encounters with potentially beneficial public services has been found to affect help-seeking behaviour across a variety of patient groups.20^–23 For the participants in this study, public services were generally perceived not as beneficial, but as a source of distrust and a potential risk to well-being. Approaching services was akin to taking a gamble that might or might not result in their needs being met. Faced with this “choice”, participants employed strategies to minimise the risks to themselves and their families that on the surface may appear risky to health.

It is important to note that the accounts analysed in this paper relate to the interviewees’ perceptions of the risks of using services and their perceptions of seeking help and health care. We cannot draw conclusions from these accounts about the motives or intentions of the professionals towards their clients in the reported encounters. What the study can do, however, is to report what the consequences of those perceptions were for the disadvantaged families concerned.

Implications for health and well-being

Two aspects of our findings have implications for health. First, the constant maintenance of outward appearances placed participants under considerable stress and strain. In addition, using public services and spaces generated anxiety.

Second, avoiding public services and spaces had direct and indirect consequences for the health of disadvantaged families. In some cases, access to preventative health services and other social interventions was affected as participants avoided children’s health screening, immunisations and Sure Start. Our findings alerted us to the possibility that families may turn to the accident and emergency department in times of crisis instead of using primary care services, which in the event means that they miss out on preventative services and early interventions. Participants who sought to avoid exposure to the perceived risks were instead exposed to the potentially health-damaging consequences of isolation and the loss of support mechanisms – support that might otherwise encourage their take-up of services.

Despite the health-damaging potential of their actions, the strategies reported here represent participants’ best attempts to sustain their families’ stability and well-being. Health-damaging strategies, such as feeding children sweets, early weaning and smoking, have been shown elsewhere to offer temporary resolution of the conflict between the demands of parenting and the constraints of poverty.19 24 Studies of mothers’ experiences of child immunisation have found that mothers deferred or defaulted on future visits following adverse experiences of immunisation, including emotional distress, non-empathic treatment by doctors and being judged.3 25^–27 In our study, participants felt powerlessness to resist what they perceived to be the damaging judgements and interventions of public services. From their perspective, they acted responsibly by taking actions that professionals might deem irresponsible.

Implications for offering genuinely supportive services

Our analysis highlights the pitfalls that must be avoided if the proposed intensive identification and intervention policies are to be viewed by disadvantaged families as helpful rather than threatening. The question posed by participants – Can I risk using public services? – reflects how the surveillance functions of health and welfare services have expanded in place of practical support over the past 15 years.28 29 Families living in poverty and adverse conditions are disproportionately subject to surveillance by services: they encounter multiple public services, are over-represented amongst social services clients and are increasingly the focus of government initiatives.30 Our findings suggest that neighbours telling on one another could have potentially damaging, socially divisive, consequences for already fragile communities. Coupled with the demise of preventative and practical support, services in the most disadvantaged communities are more likely to be stigmatising and alienating, and families who have the most to gain are least likely to seek help.20 31 Interventions that mediate access to welfare services while minimising exposure to stigma are of potential utility.32 Nevertheless, our findings suggest that even services that endeavour not to be stigmatising are at risk of “contamination” where families are aware that information is shared between agencies, extending the range of places that they consider risky.

If public services are to succeed in providing support to the most disadvantaged families, greater efforts need to go into building trust and demonstrating understanding for the strategies these families use to maintain their well-being against formidable odds.