The context of implementation
UNAMANO was developed in the Province of Reggio Emilia, Emilia-Romagna Region, in northern Italy. This Province has a population of 530,000 and includes one medium-sized city (Reggio Emilia – population 167,000) and numerous smaller towns and villages. The large main hospital is in the city of Reggio Emilia and five smaller provincial hospitals are in each of the five health districts. Cancer treatment is provided in the main hospital as well as in three of the provincial hospitals. The Province covers an area of 2,291 km², mostly plains, but also hills and mountains. The local economy is based on different sectors: agriculture and animal farming as well as widespread, specialized industry, including the ceramic industry, construction materials and technologies, mechanical engineering, the automotive industry, the food processing and agroindustry, biomedical industries, and fashion and textiles [33,34]. Moreover, the nonprofit sector and tourism are also strong, making this province one the major economic realities in Italy and in Europe .
According to the latest data from the Italian Institute of Statistics (Istat), in 2016 there were 41,505 active companies in the Province of Reggio Emilia, 58% of which registered as self-employment . Most of the active companies (94%) had fewer than 10 employees, 5% had 10 to 49 employees, and only 1% had more than 50 employees. In the same year, the employment and the unemployment rates for individuals from ages 15 to 64 years were 68.2% and 4.7%, respectively [37,38]; the latter was considerably lower than the Italian average.
In 2014, cancer incidence in the Province of RE reached 3205 cases (0.6% of local inhabitants), excluding non-melanoma skin cancer: the most common cancer diagnoses were lung and prostate cancer among men (15% both) and breast cancer (30%) among women and the 5-year survival rate of all cancer sites was 62.1% .
There are nearly twenty nonprofit volunteer associations in the province that offer different services to cancer patients and to their caregivers, e.g., home health assistance, fundraising, wigs bank, and so on. Thus, the local social context is clearly very aware of and sensitive to cancer and the cancer-related consequences that might impact on everyday life of diagnosed patients and their families.
Aims of UNAMANO
The primary aim of UNAMANO is to support CSs in their RTW process by providing a personalized care intervention delivered through this new, contextualized, social-healthcare pathway. The secondary aim is to direct CSs who are at high risk of losing or have already lost their job to the appropriate social support.
Study population and eligibility criteria
UNAMANO is for all employed individuals living in the Province of RE who receive a diagnosis of cancer.
Implementation of UNAMANO
UNAMANO has been implemented through four actions (A, B, C, D): actions A-C concern its promotion; action D consists in engaging CSs and in providing a personalized, comprehensive intervention. Action D is managed by occupational therapists (OTs) and involves several professionals who collaborate in planning a multidisciplinary intervention tailored to that CS’s specific needs. It consists of three types of support that are provided singly or in combination: information regarding employment law; occupational therapy to overcome barriers and facilitate RTW for CSs; social support through the provision of re-training and job search strategies for those CSs at high risk of job loss and for those who have unfortunately already lost their job by the time they join UNAMANO.
Figure 1 reports the Gantt Chart of the project; while Table 1 describes the role played by the network in each action.
Action A – Healthcare professional training on work-related occupational rehabilitation
The first action consisted in holding meetings to inform all the healthcare professionals involved in the care of cancer patients about UNAMANO. This included professionals from several disciplines working in different wards (oncology, haematology, rehabilitation, radiotherapy, and surgery). Training events were also held for the general practitioners and the occupational physicians working in the Province. Training events were conducted by the healthcare professionals of the pathway, namely the OTs, three physicians, a physiotherapist, a psychologist, and a nurse. During the meetings, updated information about work reintegration was reported, the rationale of UNAMANO was illustrated, and straightforward indications for referral were provided.
Action B – Dissemination in the community and to the stakeholders
Action C – Recruitment and training of volunteers
This aim of this action, started in February 2018, was to recruit volunteers to support the initiative. UNAMANO contacted several nonprofit cancer volunteer associations to describe its pathway and to identify possible areas of volunteer work. The main area identified was providing CSs with general information regarding UNAMANO and employment law.
Consequently, three specific training events were organized to recruit volunteers willing to support UNAMANO. During these events (which lasted three to four hours) the OTs, the physiotherapist, and the psychologist introduced UNAMANO and talked about useful communication techniques when dealing with CSs. The Local Health Authority’s data privacy office described to the volunteers how to collect, record, and protect sensitive data and the CSs’ written informed consent. Finally, the labour union, the social cooperatives, and the vocational training institutions participating in UNAMANO explained their specific roles in the network and provided in-depth information about employment law.
Action D – CS engagement and provision of personalized care
This ongoing action is made up of two activities: the first is the engagement and screening of eligible individuals; the second is the provision of the multidisciplinary, personalized, comprehensive intervention (Figure 2).
CS engagement and screening
In-Forma Salute, a service provided by the Medical and Patient Library of the Local Health Authority, is the point of contact with UNAMANO. In-Forma Salute is in the main hospital of the Province. The service was born in 2005 to help patients, families, and citizens obtain comprehensible, evidence-based health information. The nurse, who is also an information specialist and is responsible for this service, provides a wide range of information in response to various requests from patients and family members (e.g., health-related, logistical, etc.): a frequent patient request regards legal protection in the workplace based on employment law. For these reasons, In-Forma Salute was chosen as the project’s point of contact; citizens can access In-Forma Salute directly either in person, by telephone, or by email in order to receive personalized information.
If the eligible criteria are met, the information specialist-nurse, with the volunteers’ assistance, provides information about UNAMANO and collects the written informed consent to be included in the project. Then the OTs make an appointment and proceed with the first screening, which consists in administering the Occupational Questionnaire (OQ) to define the risk of job loss (Appendix C).
The OQ was developed by our research group by taking into consideration the key factors that emerged from studies conducted in Europe and locally [23,29]. The OQ is composed by 23 closed- and 3 open-ended questions; as some sections are mutually exclusive, each participant answers an average of 13 questions. Collected information regard:
- sociodemographic factors (age, education level, marital status and family members);
- work-related factors (employed/not employed; employed in private/public sector; description of a typical workday, employment contract and classification, work schedule flexibility and flexibility in how and when to carry out daily tasks, number of colleagues, and years of employment in the current company).
The open-ended questions focus on the CSs’ perspective regarding the potential work-related difficulties that may be encountered during the RTW process. Questions regarding health-related factors are not included in the OQ, so recruited CSs are not forced to report their cancer diagnosis and treatment course. If CSs are no longer employed, the OTs obtain more information regarding social status, employment history, and professional training with a specific Social and Work Questionnaire developed by a cooperative of the network (Appendix D).
After the first screening, recruited CSs are contacted by telephone within 10 days by the OTs for a second meeting in order to share the personalized intervention planned to overcome work difficulties.
Provision of personalized comprehensive intervention
Based on the information collected by the questionnaire/s, the OTs share with the individual the most suitable personalized intervention and implement it; based on the individual’s needs, other competent professionals of the pathway are involved. Therefore, CSs can receive any of the three types of support, or a combination of these: information, occupational therapy, and social support.
Information on employment law
Information is provided by OTs in cooperation with the nurse-information specialist and the labour union. It is delivered at the In-Forma Salute office in a face-to-face meeting. The aim is to provide information about the benefits and the legal protection in the workplace under Italian Law [31, 40,41]. Legally recognized disability is the essential prerequisite for accessing welfare and workplace benefits: no benefits are granted to individuals with up to 33% disability; non-economic benefits are granted from 34% upwards (e.g., paid sick leave) ,and economic benefits may be granted from 74% upwards (e.g., disability pension).
Also, from 46% disability, unemployed or part-time employees can register in the Provincial Labour Lists to find a more suitable job.
Moreover, the Italian law requires companies to hire a proportion of disabled workers (at least 60% disability) based on the overall number of employees. Disabled workers are assigned to tasks compatible with the current health condition and can benefit from work schedule reduction. Finally, whenever possible, disabled workers can choose among different places of work, and paid leave of absence.
However, for most CSs, these laws do not all apply for long as, in most cases, disability is temporary and not very severed.
Occupational therapy is guaranteed for CSs who, after the initial screening, are considered at low-medium risk of job loss or with RTW difficulties. These individuals are assessed in depth to define the personalized intervention.
At In-Forma Salute, the OTs administer the Work Ability Index (WAI), an assessment tool that collects information about CSs’ perception of their work ability. Moreover, a Work Assessment Questionnaire (WAQ) was developed by our research group in order to obtain exhaustive information regarding the work-related factors that may influence the RTW process (Appendix E). The WAQ collects data in the following areas:
- physical capability (e.g., intensity level, finger movement, using the stairs, balance, bending, etc.);
- cognitive performance (i.e., attention, memory, multi-tasking, pressure management, data processing, etc.);
- workplace and work tasks (i.e., environmental and organizational factors, barriers, responsibilities, supervision roles, independent or dependent work, work relationships).
For each item, work task frequency (never, sometimes, always) and perceived physical tolerance/ability (not able, partially able, able) are investigated.
After this in-depth assessment, the OTs ask the CS for permission to involve his/her employer and occupational physician in order to create a RTW plan shared by both sides (employee and employer). This is the desirable scenario: OTs evaluate the workplace location and setting and observe the CS during the execution of routine tasks. Difficulties are analysed, and the occupational therapy aimed to overcome these difficulties is implemented with the collaboration of both sides. This can include one or several of the following: accommodation of the workplace environment, accommodation of the tasks, indication to use custom disability devices, energy conservation techniques, implementation of an effective communication plan between employer, employee, and colleagues.
Furthermore, based on the OTs’ assessment, further professional support from the psychologist, the labour union, the social cooperatives, and the vocational training institutions can be activated. The psychologist is involved when the OTs recognize the CS’s need for the development of self-planning skills. The labour union is involved to support the individual with employment rights, when necessary mediating with the employer regarding critical issues in the RTW process (e.g., work schedule). Social cooperatives and vocational training institutions can be involved when a CS requires re-training to maintain employment at current company by performing other tasks. The OTs are responsible for the choice of which professional to involve, based on the assessment carried out.
If the CS does not agree to involve his/her employer and occupational physician, the OTs collect as much detailed information as possible regarding work-related factors during a face-to-face meeting or by telephone. If necessary and if possible, work-related tasks can be simulated during the meeting to allow for a more reliable description of tasks. Based on these data, the intervention is planned by the OTs and delivered to the individual. However, as the employer is not directly involved in making any accommodation suggested, the CS him/herself has full responsibility for doing so. In these cases, which are not ideal but which we expect may occur, the interventions are limited in their strategies but could still include a certain degree of accommodation of the workplace and/or tasks, the use of small disability devices, and energy conservation techniques. The individual can also be trained in more effective communication strategies to be applied in the workplace.
Social support is guaranteed to CSs who, after the initial screening, are considered at high risk of job loss and for those who, unfortunately, already lost their job before joining UNAMANO. Social support is provided by the social cooperatives, the vocational training institutions, and the labour union. The OTs’ role is to create a link between CSs and these components of the network, which will contact the individual to make an appointment at their local offices. Social support is realized through skills analysis, job search workshops, professional internships, and soft skills training. For those individuals at high risk of job loss, the labour union mediates with employers by handling the critical issues in order to facilitate a reintegration in the same company, including considering different roles or responsibilities. For those in search of a new job, the social cooperatives and the vocational training institutions help in the job search and provide training in areas that need workers. Furthermore, in response to specific needs, professional internships based on CSs’ aptitude and skills could be undertaken.