Experience of illness and employment among young adults with a long-term condition

Abstract

Employment is currently conceived by the UK government as a panacea for achieving social justice among disadvantaged groups in society. Welfare to work policies are being introduced to increase the employment rates of people with ill health and/or disability. There is little research on how individuals with chronic illness from childhood fare in the labour market as an adult and the perceptions of these groups towards work and career prospects. A qualitative study was undertaken using grounded theory to explore these issues among adults from three disease categories. In total, 30 respondents were interviewed aged between 20-32 years; 10 with cystic fibrosis, 10 with Type 1 diabetes and 10 with arthritis with gender represented equally across the three groups.

Respondents had varying degrees of disease severity. There was, however, a consensus among these young adults in how symptoms were experienced and managed. Respondents viewed themselves as competent individuals and their approach to care reflected this standpoint. Management of illness was largely taken-for-granted and perceived only as intrusive by those with deteriorating health. There was some discrepancy between the apparent advice given by health care professionals and decisions made by individuals about illness which were located in the social fabric of day-to-day activities. No specialist careers guidance had been available to these young adults. Career choice was hindered by lack of educational attainment in some cases and restricted employment opportunities in others. Most respondents were not familiar with welfare to work initiatives. At the point of interview, 20 were in full-time jobs, 2 worked part-time, 3 attended higher educational institutions and 5 were out of work receiving full disabilityrelated benefits. Disclosure of health status in employment emerged as a key issue. Jobs were sought or valued if they were well paid, provided opportunities for advancement and were fulfilling. Half the sample reported having to make some sort of adjustment to manage working lives. The majority of these involved self-care strategies such as buying special adaptations, getting up extra early on work days and making great efforts to accommodate meals into busy schedules. These types of adjustments were seemingly unacknowledged by employers. Few reported direct discrimination in the workplace. Bad employment practice was experienced but this was regarded as poor management behaviour rather than organisational policy.

Severity of illness did not appear to be linked to more expressed anxiety about the future. Women in the sample spoke of the tension between lives as desired and lives as experienced in relation to the prospect of having children.

These findings are discussed in relation to past and current research about young people, illness and work and contemporary UK polices on employment and health care.