Beliefs about illness amongst significant others and their influence on work participation outcomes for back pain patients: a pilot study

Background Although there is now a focus on the positive, health-enhancing aspects of work and activity (Waddell & Burton, 2006), it is also acknowledged that there are a wide range of psychosocial factors that act as obstacles to recovery and work participation which require a more in-depth understanding (Nicholas, 2010). People with persisting low back pain (and other illnesses) who are receiving benefits because they cannot work are now being encouraged and helped to return to employment, in line with the UK government's welfare reform agenda. Individual and social influences involved in the everyday life experiences of beneficiaries with persisting low back pain which may act as obstacles to recovery and work participation. However, there is little understanding of these influences. In this exploratory study, we used qualitative methods to facilitate an in-depth examination of the illness beliefs of those close to back pain patients (their ‘significant others’), considering how these might influence both patients’ own beliefs about their condition and work participation. Methods In-depth interviews were conducted with nine patients reporting non-specific low back pain of more than three months duration and their significant others (closest adult family member) (n = 18). The self-regulatory model (SRM) (Leventhal et al., 1984) was used as a guide to organise the interview schedule and interview transcripts were analysed using template analysis (e.g. King, 2004). Analysis focused on the significant other interview data and we sought to identify themes which demonstrated clear contrasts between dyads in which the patient had or had not remained in employment. Findings Three overarching themes are presented and discussed: (1) the extent of impact on patient activity (including employment); (2) treatment expectations; (3) patient identity. Overall, the significant others of patients who were out of work due to their back problem tended to emphasise the extreme consequences of the patient’s back pain on every aspect of their lives. They described the back pain as preventing the patient from doing things, even though closer analysis of the detail suggested that in fact the patient was able to undertake everyday activities, albeit at a lower functioning level than prior to symptom onset. Significant others of patients who remained in employment focused instead on what the patient could still do. In terms of treatment expectations, significant others of out of work patients appeared to believe that their relatives needed to be pain-free in order to resume participation in normal life, and equated only complete removal of pain with treatment success. In contrast, significant others in the employed sample tended to talk in terms of ‘management’ rather than ‘cure’, and were more accepting of the possibility that options available to manage pain were unlikely to provide complete relief of the patient’s pain symptoms. These attitudes were further reflected in participants’ beliefs about patient identity: significant others of employed patients described their relative in heroic terms; significant others of out of work patients described the patient as disabled and a blameless victim. Discussion Previous studies have shown that the impact of musculoskeletal pain and disability is greatest among socially disadvantaged populations, and among those with low education levels, and that low income and low educational attainment are the socioeconomic variables most consistently found to be associated with higher prevalence and severity of musculoskeletal problems (Carr & Klaber Moffett, 2005). The present study also suggests that socio-economic status has an important role to play in work participation outcomes. In this study, those who had remained in employment had higher status jobs and were more able to negotiate necessary flexibility and role adaptations to enable them to continue in work despite their pain. The role of good existing relationships, particularly with line managers in this context, was apparent. In terms of treatment expectations, significant others in the employed sample were more accepting when medical professionals were perceived as unable to provide answers in terms of a full explanation of the problem, or to provide a curative treatment. In contrast, significant others of those patients who were out of work were dissatisfied with treatment and sceptical of healthcare providers because patients were still experiencing pain, ultimately equating their relative’s recovery with being ‘cured’. Expectations about treatment have been proposed to be one of the major influences on outcome for patients with chronic low back pain, and the results from this study suggest that the treatment expectations held by significant others could further reinforce patient expectations, acting as wider psychosocial obstacles to recovery. There was a notable difference in the way that the two samples described how the patient’s back problem had impacted on both the patient’s identity and on their activities. The significant others of working patients tended to emphasise what the patient could do despite their back pain and attributed this to the patient’s admirable personal characteristics, describing them as heroic and stoical. In contrast, the significant others of non-working patients emphasised the extent to which the back pain prevented the patient doing things and descriptions of patient identity focused on them as a victim, anticipating and rebuffing potential accusations of personal responsibility and blame. Undertaken as it was in the context of changes to the welfare system in the United Kingdom, this work has potential implications for understanding how patients and their families may respond to the changes, and how that may impact on work participation outcomes. Our findings suggest that, if left to their own devices, there may be a danger that patients who feel that there are insurmountable obstacles to a return to their previous employment and who believe themselves to face socio-cultural scepticism about their condition, along with widespread ill-feeling towards the unemployed, may become entrenched in a position whereby it becomes all the more important to be seen as completely disabled, thus limiting their activity and their chances of any return to work. We discuss current reports and policy initiatives which recommend a focus on what patients can do, rather than what they cannot and note that our results support these initiatives. In addition, our findings, although preliminary and exploratory, emphasise the importance of taking social and environmental factors into account and we suggest that significant others may have an important role to play in this context.