FREE PILOT PSYCHOSOCIAL SUPPORT PROGRAM "BREATH" FOR LUNG CANCER
SOCIETY
CIVIL SOCIETY: 269 PRACTICES
TOPIC:
Initiative
SUBMITTED FROM:
FAIRLIFE LUNG CANCER CARE
Objective Action
Lung cancer (LC) is the leading cause of cancer death in Greece. It is, however, the least supported cancer in terms of policy measures towards prevention, medical research, funding and psychosocial support for patients and caregivers. Patients experience social isolation, end of life anxiety, due to high mortality rates and the LC stigma, while the prevalence and burden of LC require a holistic support framework.
FairLife Lung Cancer Care, the only non-profit organization, exclusively dedicated to LC in Greece, provides holistic support to people impacted by LC, aiming to improve their quality of life throughout their journey from diagnosis to treatment. Psychosocial support for people, impacted by LC, is a challenge, involving quality of life, psychological well-being and normality for patients, caregivers and family members. Psychological support for cancer patients is still not included in the national health system strategy, as opposed to other European countries. Meanwhile, the need for psychological support is widely recognized and increasingly included by cancer patient associations worldwide.
Following 2.5 active years and based on the Greek participation in the Global Lung Cancer Coalition (GLCC) and Lung Cancer Europe (LuCE) surveys, FairLife L.C.C. develops and implements the first integrated and free Psychosocial Support Program BREATH for patients, caregivers and family members impacted by LC, thus bridging an informational and supportive gap, in relation to the disease.
Psychosocial Support Program BREATH aims to provide nationwide support to vulnerable individuals living with the disease. BREATH program is a challenge proposal, addressing psychological support and social inclusion needs of patients. The program, directed to potential beneficiaries throughout Greece, uses advanced technology to ensure equal access to lung cancer support. Moreover, it promotes digital health and remote care to patients' benefit, in collaboration with experienced and qualified health professionals from accredited institutions.
Target Audience
Via the BREATH Program, FairLife L.C.C. directly addresses and supports patients with LC, their families and caregivers.
In addition, BREATH services are directed:
-to psychologists, interested to lung cancer support services
- the young generation, focusing on LC prevention
- to the wider public, high-risk or non-risk individuals, educating on prevention and the value of a healthy lifestyle
- doctors, nurses, medical personnel of diverse disciplines
- pharmaceutical companies
- Greek or international cancer organizations
- universities, research centers for carrying out scientific studies
- active citizens, wishing to voluntarily contribute to the project
- sponsors and supporters
Duration
BREATH Program required a pre-operational period (January 2022 - May 2022).
BREATH Program entered a pilot implementation period (June 2022 - June 2023) and is ongoing.
Description
FairLife L.C.C., the first non-profit organization, exclusively dedicated to lung cancer in Greece, has made a significant impact on oncology patients and the medical community, through its patient-centered and holistic approach to the disease. We aim to provide innovative services through the digital experience of social media, aiming at awareness, education and counseling.
Over 2.5 years of activities and communication with patients and caregivers helped us identify the challenge of psychosocial support to lung cancer community.
Innovative aspects of FairLife L.C.C.'s initiative:
1. Providing services, not supported by the national health care system, nor by private physicians. So far, patients have been monitored only by oncologists. No psychological support was provided to them or their relatives, within their role as caregivers.
2. Aligned with the current shift towards digital health, utilizing emerging technology tools (telemedicine)
3. Introducing a holistic approach to oncological patients in Greece. This approach is being adopted worldwide by cancer patient associations in including psychological support programs into their actions.
4. Offered free of charge to LC patients and their caregivers throughout Greece and to Greek expatriates. Support is available in 5 languages (Greek, English, Italian, French, German).
5. Providing personalized psychological support and counseling services.
6. Informing and advising on social inclusion by solving everyday issues through the current legislation, the use of State structures and services. The settlement of issues relating to medication, employment, leaves, benefits and rights relieves patients and especially caregivers of a major burden.
7. Promoting a holistic approach to LC treatment by encouraging a healthy diet, physical activity and well-being through relevant webinars.
BREATH Program required a pre-operational period (January 2022 - May 2022). Upon completion of the pre-operational period, the program has been implemented in June 2022 and continues to operate to date.
The following services are provided:
- Individual psychological counseling sessions for patients and caregivers, conducted on a weekly basis online, by telephone or in-person (as appropriate), in 5 languages. The duration of each session is between 45-50'. Individual counseling aims to relieve people impacted by LC, who may experience negative emotions, including fear, anxiety, stress, sadness, anger, difficulties in recognizing and expressing their feelings, other difficulties caused by LC and/or side effects of treatment (e.g., changes in appearance, pain).
- Group psychological counseling sessions for patients and caregivers, held weekly, online, with a maximum of 10 participants. The duration of each session is 90'. Support groups aim to gradually relieve patients and caregivers through discussion and exchange of thoughts and feelings, guided by a mental health professional.
- Couple and family counseling sessions
- Bereavement counseling services for children, adolescents and parents, before and after the loss of a loved one.
- Guidance on the social and legal rights of patients, according to Greek legislation.
- Creative activities through online Pilates sessions to empower and promote physical and social well-being.
- FairLine 11157 support line, additionally operating, reporting patients' requests to the BREATH program.
The Digital Informative Library LEARN-ACT-HOPE serves as a valuable tool for the BREATH program, together with the 111 57 Support Line. The awarded digital library is hosted on the FairLife L.C.C. website, providing LC information through 50 informative videos.
BREATH Program is an innovative program, featuring a patient-centered and holistic approach to LC patients and their caregivers. Focusing on digital health and decentralized support for oncology patients, BREATH aims to promote psychological empowerment and life quality improvement.
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Impact on Society
BREATH Program has been implemented initially on a pilot basis.
- Pre-operational period (January 2022 - May 2022).
- Pilot implementation period (June 2022 - June 2023) and is ongoing.
Quantitative and qualitative data, as recorded so far, confirm the necessity and value of the psychosocial support program.
Anonymous questionnaires completed by BREATH participants as well as the interaction with experts at the BREATH webinar serve as qualitative indicators and confirm the program's relevance and success.
Patients confirm the high emotional burden of LC, due to late diagnosis, the lack of an integrated screening program and psychological support from the state, the high mortality rate and the low 5-year survival rate.
LC social impact, including the stigma burden and guilt associated with smoking, is enormous. In addition to ongoing support regarding LC information and prevention, guidance is crucial to maintain mental balance, to cope with everyday challenges and manage grief and loss.
More than 80% of BREATH participants recognize the positive impact on both them and their social environment.
Meanwhile, specific suggestions have been made, regarding the sequence of sessions (first individual and then group sessions), the number, the duration of psychosocial support, according to the stage and progression of LC, the need to continue the sessions upon completion of the program.
Online - phone requests, number of participants in sessions and seminars, calls received through the 11157 Support Line, traffic - performance via communication channels (website, social media, YouTube), evaluation questionnaires, number of views or participations in educational seminars, as monitored by platform administrators and Google Analytics 4
were used to measure communication and beneficiaries' data.
Report:
- 316 submitted requests for participation in psychological support sessions
- 101 submitted requests for information and counseling on social and legal rights
- 19 submitted requests for creative activities and Pilates sessions
42% were patients (mainly men over 65 years of age) and 58% caregivers (mainly women aged 35-54).
373 individuals benefited through 516 psychological support sessions (individual, group, family), 32 individuals benefited from Pilates sessions and 72 received social care assistance.
Considering that each person living with LC affects an average of 8-10 other people within social and family environment, BREATH program directly and indirectly impacted over 3,400 people.
Geographical distribution of requests: 50.5% Attica, 15% Thessaloniki, 9.5% Island region and 25% Rest of Mainland region.
Given the digital era, the online option of attendance has enabled people of all ages to socialize, confide in therapists and experience relief with no geographical restrictions, especially during the post- covid era. We observed that 10 patients acted as an inspiration to other patients. The need for smaller inner groups was highlighted. Communication of BREATH Program throughout the country offered the chance to people, living with LC, to seek help and receive targeted information.
Extensive advertising and presence in the top search engine positions for mental health, psychological support and LC topics has delivered the following results:
- Over 1,240,000 unique users in Social Media were exposed to FairLife’s message, displayed around 4,250,000 times. Social media communication generated 19,876 visitors, directly driven to the project page, with an average time spent of 05:12.
Also more than 100 articles on media with an estimated reach 1.307.000 Estimated total Reach ( Circulation/Unique Visitors per day)
- A hybrid webinar, dedicated to the BREATH program was held, hosting 21 speakers as well as beneficiary patients and caregivers. The event was attended by over 950 people.
- 6,000 BREATH brochures were distributed to hospitals and care facilities, municipalities, patient associations, physicians and eventually received by patients and caregivers.
Initiative Location
BREATH Program is implemented nationwide for LC patients, families and caregivers.
Working with Organization
BREATH Program is provided free of charge to LC patients, families and caregivers, in collaboration with experienced and qualified mental health professionals from recognized organizations.
To implement BREATH, FairLife L.C.C. collaborates with:
- the Hellenic Institute for Group Analytic & Family Psychotherapy, with the main purpose of providing complete and systematic training in group analysis, as well as couple and family therapy.
- Merimna, the only organization in Greece, for the last 28 years, specializing in the psychological support of grieving children and adolescents and in the provision of Pediatric Palliative Care to children with life-threatening diseases.
- K3 Guidance Center for Cancer Patients, aiming to improve life quality of oncology patients and their families throughout Greece, supporting their access to health and welfare services.
- Just Pilates Studio, offering online Pilates sessions to patients and caregivers to enhance fitness, respiratory function and mental well-being.
- Individual psychotherapists.
To develop audiovisual materials and promote communication through media channels and website, FairLife L.C.C. collaborates with:
- Catalytica Advertising Services, responsible for the communication strategy of the BREATH program and the development and management of FairLife L.C.C.’s website.
- Wasp Studio for audiovisual material development and the organization of a webinar, dedicated to the BREATH program.
The Central Union of Municipalities in Greece (KEDE) and 26 Municipalities and Health Centers throughout the country, communicated the BREATH program to the local community and the wider public.
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Workers Participation
BREATH Program is being implemented by:
- the scientific supervisor - mental health professional, who makes the initial contact with people concerned, receives and manages requests, provides information and guidance on BREATH services and general information on LC.
- the BREATH project manager, responsible for overall and smooth operation.
25 physicians of the FairLife L.C.C.'s scientific team and 34 volunteers worked for a total of 3,800 hours to plan, implement and consolidate the BREATH program.
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Benefits for Οrganization
BREATH Program fosters cooperation and trust between FairLife L.C.C. and beneficiaries. Upon completion of sessions, closer personal connections were built in numerous cases. BREATH program has been an opportunity for new collaborations between FairLife L.C.C. and relevant institutions and the exchange of knowledge and information. More than 57 people were added to the list of volunteers and friends of the organization. Friends will receive regular communication and updates and volunteers will join the organization's activities.
The input of beneficiary patients and caregivers, coping with LC is of great significance, as well as evaluating the health care system in Greece. 25 personal stories and over 30 comments from beneficiaries were collected in total. FairLife L.C.C. takes these accounts as a guide for future awareness, information and support activities.
Connection with Global Goals
