Perceived barriers to and facilitators of labor market engagement for individuals with chronic physical illness in their experience with disability policy: a systematic review of qualitative evidence protocol

Abstract

Review question / objective 

Two research questions will be addressed. These are, from the perspective of individuals with chronic physical illness:

1. what are the barriers in disability policies with respect to labor market engagement?
2. what are perceived facilitators in disability policies with respect to labor market engagement?

The objective of this review is to identify and synthesize the best available evidence regarding barriers and facilitators that exist at the policy level with respect to labor market engagement (i.e. gaining and maintaining employment), from the perspective of individuals with chronic physical illness.

Background 

According to the World Health Organization, over one billion people or about 15% of the world's population live with a disability,¹ including an estimated 386 million of the world's working-age population.² Among the 34 developed and emerging countries in the Organization for Economic Co-operation and Development (OECD), a global organization that promotes policies to “improve the economic and social well-being of people around the world”,^3(para1) these figures translate into 14% of the working-age population living with a disability.⁴ It is projected that these numbers will continue to rise due to an aging population, increased longevity and a global increase in chronic illnesses, such as cardiovascular disease, cancer, diabetes and respiratory diseases.¹ Despite research indicating that employees with disabilities have better retention rates than those who do not,² and that employers who hire individuals with disabilities outperform their competitors,⁵ unemployment among disabled persons is as high as 80% in some countries.² These statistics not only speak of the growing number of working-age disabled individuals worldwide, but also the difficulties they face in terms of labor market engagement.¹

Disability refers to “impairments, activity limitations and participation restrictions”.^1(p4) Although there are numerous different definitions of disability in literature, it is generally acknowledged that disability arises from an interaction between health conditions and personal and environmental factors.¹ A widely used definition is that of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) where disability is conceptualized as resulting “from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”.^2(p1) Although any of a number of conditions, such as developmental conditions, sensory impairments, injuries and infectious diseases, may contribute to disability, chronic illnesses are the leading contributory cause of disability worldwide^1,6 and the onset often occurs during an individual's prime working years.⁷

The worldwide socio-economic impact of chronic illness in the working population is well recognized,¹ and includes unemployment,^4,8 premature withdrawal from employment,^9,10 decreased productivity due to absenteeism and presenteeism,^10,11increased health care costs, reduced tax revenues and increased welfare spending.¹⁰But there are human costs too - social exclusion, stigma, poverty, decreased self-efficacy, and increased burden on families and caregivers.^1,10 Furthermore, the relationship between illness and employment is bi-directional with unemployment and underemployment having adverse health effects, such as depression and substance abuse, and leading to an increase in symptoms of chronic illnesses.¹² It seems that regardless of one's ability status, work is good for mental and physical health.

Yet, individuals with chronic illnesses and resulting disability face many challenges in gaining and maintaining employment. Although personal health-related factors, such as mobility limitations, fatigue, pain and symptom flare-ups can account for some of the challenges,^7,13 system factors, in particular, work disability policies, are also at play. Work disability policy refers to guidelines and rules pertaining to non-monetary benefits, supports and financial compensation relative to work; employment; and integration into the work force for individuals with disability. It includes policy from various sources: government level programs relevant to income security and labor market engagement, private disability pension plans, disability and accident insurances, trade union agreements and employers.

There are cross country differences among disability policies with respect to the definition of disability, eligibility requirements, benefit recipiency and employment incentives.¹⁴ Despite these differences, work disability policies worldwide share two overarching aims, i.e. to provide: 1) financial compensation to individuals whose disability is preventing or compromising their ability to work and earn a decent wage, and 2) employment-oriented programs to encourage labor market engagement, often referred to as integration.¹⁵ Over the past few decades, within the OECD, there has been a steady trend away from compensatory polices and towards integration policies.¹⁶

It has been argued that the reason many disabled persons are not working is due to policy failure.¹⁵ Within the CRPD, policy inadequacies and a lack of policy enforcement were identified as restricting both social and labor market engagement for individuals with disabilities.² Research conducted by the International Labor Organization revealed that state laws protecting disabled workers can in fact increase the reluctance of private companies to hire them and social insurance programs can discourage a return to work.¹⁷

Individuals living with chronic physical illnesses may encounter challenges with work disability policies. They can experience a fragmented disability policy system¹⁸ that is more suited to individuals with acute injuries and illnesses than to individuals whose ability to work can fluctuate.¹³ Individuals who are chronically physically disabled are not a homogeneous group and the specificity of eligibility requirements can lead to many falling between the cracks.^13,19 However, just as there are policies that impose barriers to labor market engagement of individuals with chronic physical illness, there are also policies that facilitate their labor market engagement.^20,21

What constitutes disability policy barriers and facilitators to labor market engagement for individuals with chronic physical illness is best understood from the perspective of the individuals themselves. A preliminary review of literature indicates that qualitative studies exist on the perceptions of individuals living with chronic physical illnesses in relation to experiences with policy that is prohibitive or facilitative of labor market engagement. It is anticipated that a systematic review of such studies will enable understandings so as to inform recommendations for work disability policy that meets the needs of individuals with chronic physical illnesses. A search of the JBI Database of Systematic Reviews and Implementation Reports, the Campbell Library, the Cochrane Library, Google Scholar and the PROSPERO, CINAHL and PubMed (MEDLINE) databases was conducted to determine whether any systematic reviews had been conducted to date about disability policy and labor market engagement. Twenty-one review documents relevant to disability and employment were retrieved and examined. These consisted of: (a) a narrative literature review on job retention strategies⁷; (b) a protocol for a systematic review on labor market interventions in low- and middle-income countries²²; (c) three scoping reviews examining the influence of chronic pain on work²³, employment programs, policies and interventions²¹, and meaning of work²⁴; (d) a systematic review of topics and trends in research on interventions for work-related musculoskeletal disorders²⁵; (e) six systematic reviews on evaluation or effectiveness of employment or workplace interventions^26-28, three of which included qualitative studies^20,29,30; (f) three systematic reviews on the impact of chronic pain in the workplace³¹, employee quality of life³², and determinants of continued employment³³, two of which included qualitative studies^32,33; and (g) six qualitative systematic reviews on employment experiences.^34-39 However, no review was found that focused on barriers and facilitators, from the perspective of individuals with chronic physical illness, at the policy level with respect to labor market engagement.

Inclusion criteria

Type of participants

This review will consist of studies that include women and men who are of working age (typically 16 to 65 years), have one or more chronic physical illness, have experience with disability policy, and live in any community worldwide. The studies may involve only individuals with chronic physical illness or may include other individuals also, as long as data can be extracted on the individuals with chronic physical illness. The following definition of chronic physical illness will be used to identify studies conducted on the participants of interest:

Chronic physical illness is any physical disease of “long duration and generally slow progression”^{6(para 1)} which can be treated by health interventions but not cured and which can impair daily activities through disability and negatively impact quality of life.⁴⁰ Among the most common chronic physical illnesses are cardiovascular disease (e.g. coronary artery disease), cerebrovascular disease (e.g. stroke), chronic obstructive pulmonary disease, asthma, diabetes, cancer, arthritis, HIV/AIDS, and such neurological conditions as epilepsy, multiple sclerosis and Parkinson's disease.^6,40,41 Excluded from this definition are dementia, mental illness, sensory impairment (hearing and vision loss), developmental conditions (e.g. cerebral palsy, autism) and injuries.

Phenomena of interest

The phenomena of interest for this review are perceived barriers and facilitators in disability policy with respect to labor market engagement. Therefore studies about experiences with disability policy and in which one or both of these phenomena have been examined will be considered for inclusion in this review.

Context

The context of interest for this review is individuals with chronic physical illness living in any community worldwide.

Types of studies

The studies that will be considered for this review are those in which qualitative data have been gathered and analyzed on the phenomena of interest and include, but are not limited to, the following designs: phenomenology, grounded theory, ethnography, qualitative description, action research, feminist research and mixed methods research.

Search strategy

A three-step search strategy will be employed in this review to find both published and unpublished studies. An initial limited search of PubMed and CINAHL will be undertaken followed by an analysis of text words contained in the title and abstract and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Language limits will not be applied in the search strategies. However, only studies published in the English language will be considered for inclusion in this review. Any published non-English studies will be documented and reported in the review. Date limitations will not be imposed on search strategies.

The databases that will be searched consist of the following: PubMed, CINAHL, PsycInfo, Ageline, Sociological Abstracts, SocINDEX, Social Services Abstracts and Social Work Abstracts. Unpublished studies will be sought through direct contact with authors and through searching ProQuest Dissertations and Theses, MEDNAR, Google Scholar, OpenGrey, OAIster, Google and websites for relevant research institutions, government agencies and non-government organizations.

Initial keywords for the search will consist of the following:

chronic disease, chronic illness, chronic condition, disability, and specific chronic illnesses and classes of illnesses, namely arthritis, asthma, cancer, cardiovascular disease, cerebrovascular disease, coronary artery disease, chronic kidney disease, chronic fatigue syndrome, chronic obstructive pulmonary disease, Crohn's disease, diabetes, epilepsy, fibromyalgia, hepatitis, HIV/AIDS, stroke, systemic lupus erythematosus, Lou Gehrig's disease (amyotrophic lateral sclerosis), multiple sclerosis, Parkinson's disease, ulcerative colitis

work, employment, labor/labour market, job market, job accommodation, job re-entry, disability insurance, benefits, sick leave, policy, legislation, public assistance, social security, social welfare

experience, perception, perspective, narrative, interview, field study, focus group, audio-recording, observational method, qualitative, phenomenology, grounded theory, ethnography, mixed methods, content analysis

The search strategy will be implemented by the health sciences librarian on this review in consultation and collaboration with the other reviewers.

Assessment of methodological quality

Papers selected for retrieval will be independently assessed by the primary and secondary reviewers, that is, the first and second authors, for methodological validity prior to inclusion in the review. A standardized critical appraisal instrument, the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI), will be used (Appendix I). The reviewers will be blinded to each other's assessments of the studies. Once the assessments are completed, the primary reviewer will compare the two assessments for each study. Any discrepancies between the assessments will be resolved through discussion between the first two reviewers and in consultation with the third reviewer and a decision will be made to include the study or not include it in the review.

Data extraction

Data will be extracted from papers included in the review using the standardized Joanna Briggs Institute Data Extraction Instrument (JBI-QARI) (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes relevant to addressing the review questions. Authors of studies will be contacted to clarify or seek additional data as necessary. The data will be extracted from each study by the primary reviewer in collaboration with the secondary reviewer. The third reviewer will be consulted should questions arise concerning the data.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for informing evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form. The data synthesis will be conducted by the primary reviewer in collaboration with the secondary reviewer. The third reviewer will be consulted for input and the findings will be confirmed through team discussion.

Conflicts of interest

The authors declare no conflicts of interest.