Users’ Experience of Public Cancer Screening Services: Qualitative Research Findings and Implications for Public Health System
Abstract
:1. Introduction
Objectives
2. Materials and Methods
2.1. Recruiting of the Participants and Tools
2.2. Data Analysis
3. Results
3.1. Participants’ Characteristics
3.2. Categories and Macro-Categories
3.2.1. Health and Body
“Let’s say it’s the first thing, that’s it. In my opinion, it’s more important than everything, and people should really prioritise it, that’s it”(woman, 50 years old, employed, breast screening).
“For me, health is the most important thing and should always be our first thought. Check-ups are important, and I have my medical exams as far as I can. For instance, every year, I have my tests, you know, starting with the smallest things. These are the basics!”(woman, 51 years old, housewife, breast screening).
“That’s just what I was telling the doctor before: as I watch “Buongiorno Benessere” on TV every day, for me, health equals well-being! I mean it is important to be healthy, so you are also happier and can give more to others”(woman, 65 years old, retired, colorectal screening).
“For me, it’s a wish... In 2014 I had surgery for melanoma, then in 2015 another one for colorectal cancer and in 2017 for liver metastasis. So, for me, the word health is a nice wish…”(woman, 57 years old, employee, breast screening).
“Because if you are sick, the children, the grandchildren, the husband... let’s say that the woman is the person who manages a little bit of everything in the family (...). So, my children say: ‘Mom, you have to take care of yourself for us… We need you!’. So, sometimes you take care of yourself, just for them”(woman, 69 years old, unemployed, breast screening).
“With my body, I have quite a conflicting relationship… I mean, I was happy to come here today for the screening, but if I had to take the initiative myself, perhaps I would not have done it. But I am still happy when someone cares about me regularly—I have to admit it—I am glad to be invited to come and have the exam”(woman, 58 years old, lawyer, cervical screening).
“Eh…with my body… let’s say it’s controversial. About the aesthetic, well, I think that maybe everyone has something they don’t like about their body. So, with the prevention, it could be similar, maybe one should do some prevention, do some treatment… just do something, in short”(woman, 45 years old, unemployed, cervical screening).
“We are subjected to various taboos. For instance, let’s talk about vaginal health… Oh my, what did you say! Today, I still see strong fatigue in people—maybe also due to my job—when they should use terms like menstruation... It’s somewhat a taboo. It seems like saying something unbelievable, like the tampon… what is it? […] That’s something that upsets me. In fact, for me, that’s the problem, there are so many indirect ways of naming menstruation....”(woman, 33 years old, cultural mediator, cervical screening).
“I’m in menopause. I have headache problems, problems with my period. I haven’t had my period for a year now, but all my bones ache, my arms… I feel bad about myself”(woman, 55 years old, unemployed, breast screening).
“Hopefully, this situation will end as soon as possible. I’m also trying to take some supplements that can help me with both the bloating and the mood because menopause consists of that awful thing: you go from a state where you are happy and content to a state of prostration, and you want to cry for no reason. The worst thing is the need to throw away all the clothes you’ve worn all your life, and that maybe you were delighted to buy, and for buying them you’ve even made sacrifices… Perhaps you’ve got a nice pair of trousers, then you try them on and they don’t go up… In short, it was a hideous experience, and it’s still like that… It’s awful”(woman, 54 years old, office worker, breast screening).
“I don’t like looking at myself in the mirror. I don’t feel myself anymore. I’ve put on weight, swollen, and taking cortisone for six months, It’s been 15 days since I finished, but I’ve never felt so swollen”(woman, 46 years old, housewife, cervical screening).
“I don’t have a good relationship with my body because I basically don’t like myself, and it’s because I’m clearly overweight; that’s something people always tell me”(woman, 61 years old, employed, cervical screening).
3.2.2. Relationship with Cancer and Other Diseases
“As I said before, I lost my brother after my mum, and then immediately also my father, not even a year after my mum. My brother died of gastric cancer. It was really invasive. My brother suffered so much, even more than my mum and dad. First, it came out on his leg, then on his face… It was growing everywhere. It’s been six months since... Let’s say since December. We really didn’t understand anything. That’s why I’m here...”(woman, 50 years old, office worker, breast screening).
“I think, here’s an example of my sister, who had never had a mammogram. At one point, she looked at her breast, saw this withdrawn nipple, immediately had an ultrasound, I mean, a mammogram, and suddenly had to have the breast removed”(woman, 65 years old, retired, colorectal screening).
“I am here because of familiarity. My father died of colon cancer, and my brother of leukemia, the blood cancer”(woman, 69 years old, teacher, colorectal screening).
“In my family, it happened that in January an uncle of mine died with lung cancer, and he had never had anything before, so this made me think about it...”(woman, 55 years old, unemployed, cervical screening).
“It is preferable to do the screening immediately to avoid later problems. It’s also because I have seen so many cases of friends who practically had big problems… A short time ago, a 51-year-old friend died of breast cancer, she had had surgery two years before, and maybe the surgery wasn’t well-done because first she had chemo and everything was fine, she also had her check-ups, and everything was fine, but then, within two or three months... So, yes, prevention is a very good thing, but there are cases in which these diseases are so insidious that...”(woman, 66 years old, pensioner, breast screening).
“A 45-year-old friend of mine realised she had cancer precisely because she attended a prevention exam, and today she is fine. For me, not doing prevention is risky, and it is a form of cowardice because often people do not want to know, but we should face it”(woman, 63 years old, trader, breast screening).
3.2.3. Health Facilities and Health Providers
“It was advantageous. These initiatives they organise for women’s health… like these trucks on the street where you can access screening for free. Maybe they should do it even more often so that when a person finds them on the street, they do not need to queue, and maybe, in this way, they don’t get discouraged and just do it”(woman, 58 years old, employed, breast screening).
“Because if I had wanted to do it on my own, I would have had to go to the doctor to get the prescription, then collect the sample...Instead, they did everything themselves, booking it was effortless. I just had to do the test, so I brought it here, and it was straightforward”(woman, 54 years old, lecturer, breast screening).
“The only problem [of attending screenings in public facilities] is the opening hours of the facilities, so you have to use these time slots where you maybe have to come there from work, go back and forth... Instead, in the private facilities, it’s easier, you can go there as soon as you are ready and do the screening. It’s just this. Then, when it comes to everything else, everything is well organised”(woman, 51 years old, employee, colorectal screening).
“The population could be helped by offering not only mammograms but also ultrasound as a screening exam, which is not foreseen beyond age 46. I asked to have it because the doctor said it is an age in which people are more prone to problems”(woman, 49 years old, teacher, breast screening).
“She was fantastic, I mean, welcoming, detailed, very precise, which is pretty crucial. The communication and the relationship between the practitioner and patient are essential… at that moment, I was her patient”(woman, 51 years old, nurse, colorectal screening).
“The doctor who did my mammogram was very nice, kind, and did not make me feel uncomfortable at all. On the contrary, some doctors make you feel uncomfortable. The doctor here was exceptional”(woman, 62 years old, housewife, breast screening).
3.2.4. The Affective Determinants of Cancer Screening Participation
“The Annunziata is the facility par excellence, I always say that it is the place where lives are born. I always said that.. because lives were born there, I used to bring babies here. For me, this place represents trust”(woman, 55 years old, school collaborator, breast screening) (the Annunziata hospital was founded in the 14th century as an institution for the care of abandoned children, and was an important point of reference for Neapolitans for the care of children and their mothers).
“Apart from the fact that I have a sister who is a doctor, my husband is a scientific informant, and I always knew, I can’t tell you how, but I always knew that there were these check-ups which needed to be done. Furthermore, between friends, it is said: ‘Why don’t you go to the ASL (an Azienda Sanitaria Locale (ASL) is a public authority within the Italian public administration, responsible for providing public health services in a specific territory, usually provincial)? You can join the women’s prevention programs; you don’t need to pay anything because you are over a certain age…’(woman, 62 years old, housewife, breast screening).
“Thanks to my brother-in-law, I did the ultrasound here”(woman, 58 years old, employed, breast screening).
3.2.5. Partners and Children
“I have a 10-year-old girl, I had her when I was 40. I want to see her grown up, so I am afraid because of the familiarity with diseases”(woman, 50 years old, employed, breast screening).
“I have a child, and I want to see him grow up because I grew up without a mother, so I know precisely what it’s like. I want to be next to my child as long as possible, so I must be very careful. I always have to be vigilant, avoiding bad things, because prevention is better than cure!”(woman, 27 years old, cervical screening).
“Because if I neglected myself, I would abandon my two children, my husband, my parents who would suffer a lot… Well, also for myself, because I would prefer to stay alive a little longer”(woman, 51 years old, housewife, breast screening).
“What would I do with my children? How could I not think about them?”(woman, 49 years old, housewife, breast screening).
3.2.6. Physical Sensations and Emotions in the Course of Action
“I always feel a little anxious until the results arrive. I am always thinking about it. There is always the fear of bad news. But then I wait anyway...”(woman, 54 years old, housewife, cervical screening).
“Well, those of waiting will be difficult days, full of anxiety. There’s also the hope that no phone call will arrive…”(woman, 49 years old, housewife, cervical screening).
“I was afraid to do it, I was quite worried about the idea of feeling the pain, but once I was there, I faced it. The moment I was facing it, I said to myself: ‘Ok, I’ve done. Now I just have to wait for the results’”(woman, 54 years old, lawyer, breast screening).
“Pain, when he squeezed my breast in that thing, yes. This guy was good compared to the one I found last time I came here, who just threw it there… Instead, he assisted me really well, and, in fact, I told him he was very good”(woman, 56 years old, office worker, breast screening).
3.2.7. Protective Actions
“It’s hard to say, but I’m 55 years old. I try to have a correct diet, everyone makes sacrifices, but I also try to do some physical activity. I stopped smoking a while ago, so I think having a more or less correct diet and doing physical activity allows me to live my life optimistically”(man, 55 years old, office worker, colorectal screening).
“I follow a diet. First of all, I do physical activity. I’m a smoker. I’m trying to quit, to smoke less and just get rid of this habit because it’s so unhealthy. In the meantime, I also get informed about the check-ups suggested for my age. To feel safe and physically healthy, I do everything possible”(woman, 27 years old, unemployed, cervical screening).
“I take care of my external health because that is also important. If I care, I like to do my scrubs, nice hot baths, masks…”(woman, 56 years old, housewife, breast screening).
“I’m always afraid of receiving bad news, so sometimes I don’t sleep so well at night. I have bad dreams, I dream that it’s not going well, but then I think that Jesus will help me, and I hope it will go well. And thank God everything has gone well for me in the last two years”(woman, 51 years old, housewife, breast screening).
“Well… It occurs to me that we are in the hands of the Lord. What God wants will happen”(woman, 64 years old, secretary, breast screening).
3.2.8. Promotion and Dissemination
“Let’s say that the healthcare system should accommodate prevention and inform people more, get them more involved, because maybe because of a lack of information or for the high cost of so many examinations, many people do not succeed, don’t do it, in short. But, in my opinion, there should be a strong campaign precisely targeting prevention because, in any case, the diffusion of cancer is increasing and the diseases are many, so the national healthcare system is responsible for all of them”(man, 55 years old, employee, colorectal screening).
“I would tell my friends that undergoing the screening is like nothing. It’s not painful at all or, at least, if it is painful, it is just a matter of a few minutes. People just have to do it”(woman, 42, architect, breast screening).
“I had the opportunity to know about the screenings thanks to the travelling truck that the region organised. They came to the town where I work”(woman, 53 years old, teacher, breast screening).
“I do prevention within the private healthcare system, first of all because it consents more immediate access. Here [at the public facilities], I have to accept the specialist on duty, whom, for goodness’ sake, I greatly trust, but do not know personally”(woman, 61, employed, cervical screening).
3.3. The Core Category. Family and Familiarity: Prevention as an Act of Care for Others
4. Discussion
5. Limitations
6. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- Ferlay, J.; Ervik, M.; Lam, F.; Colombet, M.; Mery, L.; Piñeros, M. Global Cancer Observatory: Cancer Today. Int. J. Cancer 2020, 144, 1941–1953. [Google Scholar] [CrossRef] [PubMed]
- AIRTUM. I Numeri Del Cancro in Italia 2021; Intermedia Editore: Brescia, Italy, 2021. [Google Scholar]
- Schüz, J.; Espina, C.; Villain, P.; Herrero, R.; Leon, M.E.; Minozzi, S.; Lignini, T. European Code against Cancer 4th Edition: 12 Ways to Reduce Your Cancer Risk. Cancer Epidemiol. 2015, 39, S1–S10. [Google Scholar] [CrossRef] [PubMed]
- OECD. Profili Sul Cancro per Paese: Italia 2023, EU Country Cancer Profiles; OECD Publishing: Paris, France, 2023. [Google Scholar]
- EpiCentro Sorveglianza PASSI. Available online: https://www.epicentro.iss.it/passi/dati/ScreeningColorettale (accessed on 6 December 2022).
- Shaw, D.J. Fourth World Conference on Women; Palgrave Macmillan: London, UK, 1995. [Google Scholar]
- PASSI. Programmi Di Prevenzione Individuale—Screening Rapporto Regionale 2020 Campania. Available online: https://www.epicentro.iss.it/passi/pdf2021/Programmi%20di%20prevenzione%20individuale%20-%20Screening.pdf (accessed on 14 December 2022).
- Vallone, F.; Lemmo, D.; Martino, M.L.; Donizzetti, A.R.; Freda, M.F.; Palumbo, F.; Lorenzo, E.; D’Argenzio, A.; Caso, D. Factors Promoting Breast, Cervical and Colorectal Cancer Screenings Participation: A Systematic Review. Psycho Oncol. 2022, 31, 1435–1447. [Google Scholar] [CrossRef] [PubMed]
- Dressler, J.; Johnsen, A.T.; Madsen, L.J.; Rasmussen, M.; Jorgensen, L.N. Factors Affecting Patient Adherence to Publicly Funded Colorectal Cancer Screening Programmes: A Systematic Review. Public Health 2021, 190, 67–74. [Google Scholar] [CrossRef] [PubMed]
- Lemmo, D.; Martino, M.L.; Vallone, F.; Donizzetti, A.R.; Freda, M.F.; Palumbo, F.; Lorenzo, E.; D’Argenzio, A.; Caso, D. Clinical and Psychosocial Constructs for Breast, Cervical, and Colorectal Cancer Screening Participation: A Systematic Review. Int. J. Clin. Health Psychol. 2023, 23, 100354. [Google Scholar] [CrossRef] [PubMed]
- Johnson, J.L.; Adkins, D.; Chauvin, S. A Review of the Quality Indicators of Rigor in Qualitative Research. Am. J. Pharm. Educ. 2020, 84, 7120. [Google Scholar] [CrossRef] [PubMed]
- Denzin, N.K.; Lincoln, Y.S. Handbook of Qualitative Research; Sage: Thousand Oaks, CA, USA, 1994. [Google Scholar]
- Corbin, J.; Strauss, A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 4th ed.; Sage Publications: Los Angeles, CA, USA, 2014. [Google Scholar]
- Charmaz, K.; Belgrave, L.L. Thinking about Data with Grounded Theory. Qual. Inq. 2019, 25, 743–753. [Google Scholar] [CrossRef]
- Bryant, A. Grounded Theory and Grounded Theorising: Pragmatism in Research Practice; Oxford University Press: Oxford, UK, 2017. [Google Scholar]
- Engward, H. Understanding Grounded Theory. Nurs. Stand. 2013, 28, 37–41. [Google Scholar] [CrossRef] [PubMed]
- Arcidiacono, C. L’intervista narrativa focalizzata come strumento per superare chiusure e fraintendimenti nelle dinamiche interculturali. In Immigrazione, Processi Interculturali e Cittadinanza Attiva; Giovannini, D., Vezzali, L., Eds.; La Melagrana: Caserta, Italy, 2012; pp. 373–384. [Google Scholar]
- Atlas.ti, version 8.0; Software for Qualitative Data Analysis; ATLAS.ti Scientific Software Development GmbH: Berlin, Germany, 2018.
- Chad-Friedman, E.; Coleman, S.; Traeger, L.N.; Pirl, W.F.; Goldman, R.; Atlas, S.J.; Park, E.R. Psychological Distress Associated with Cancer Screening: A Systematic Review. Cancer 2017, 123, 3882–3894. [Google Scholar] [CrossRef] [PubMed]
- Bleichmar, S. Vergüenza, Culpa, Pudor; Paidos: Ciudad de Buenos Aires, Argentina, 2016. [Google Scholar]
- Vrinten, C.; McGregor, L.M.; Heinrich, M.; Wagner, C.; Waller, J.; Wardle, J.; Black, G.B. What Do People Fear about Cancer? A Systematic Review and Meta-synthesis of Cancer Fears in the General Population. Psycho Oncol. 2017, 26, 1070–1079. [Google Scholar] [CrossRef] [PubMed]
- Dubayova, T.; Dijk, J.P.; Nagyova, I.; Rosenberger, J.; Havlikova, E.; Gdovinova, Z.; Groothoff, J.W. The Impact of the Intensity of Fear on Patient’s Delay Regarding Health Care Seeking Behavior: A Systematic Review. Int. J. Public Health 2010, 55, 459–468. [Google Scholar] [CrossRef] [PubMed]
- Fondazione Veronesi. Tumori: Il Corpo e la Mente. Un Manuale di Psiconcologia per le Donne che Affrontano il Cancro; Fondazione Veronesi: Milano, Italy, 2019. [Google Scholar]
- Scaglioni, G.; Cavazza, N. Emotional Barriers to Bowel Screening in Italy: Scale Psychometric Properties and Effects on Screening Attendance. Psycho Oncol. 2022, 31, 78–85. [Google Scholar] [CrossRef] [PubMed]
- Raffle, A.E. Informed Participation in Screening Is Essential. Br. Med. J. 1997, 314, 1762–1763. [Google Scholar] [CrossRef] [PubMed]
- Rainey, L.; Jervaeus, A.; Donnelly, L.S.; Evans, D.G.; Hammarström, M.; Hall, P.; Waal, D. Women’s Perceptions of Personalised Risk-based Breast Cancer Screening and Prevention: An International Focus Group Study. Psycho Oncol. 2019, 28, 1056–1062. [Google Scholar] [CrossRef] [PubMed]
- Anastasi, N.; Lusher, J. The Impact of Breast Cancer Awareness Interventions on Breast Screening Uptake among Women in the United Kingdom: A Systematic Review. J. Health Psychol. 2019, 24, 113–124. [Google Scholar] [CrossRef] [PubMed]
Gender | N | % |
---|---|---|
Male | 7 | 6.8 |
Female | 96 | 93.2 |
Offspring | ||
Yes | 88 | 85.4 |
No | 15 | 14.6 |
Work Status | ||
Housewife | 25 | 24.5 |
Teacher | 12 | 11.8 |
Lawyer | 3 | 2.9 |
Health professional | 7 | 6.9 |
Manager | 2 | 2.0 |
Architect | 1 | 1.0 |
Librarian | 1 | 1.0 |
Office worker | 25 | 24.5 |
Secretary | 4 | 3.9 |
Social manager | 1 | 1.0 |
Hairdresser | 1 | 1.0 |
Retired | 6 | 5.9 |
Unemployed | 15 | 13.7 |
Family History of Cancer | ||
Yes | 55 | 53.4 |
No | 48 | 46.6 |
Preferred Healthcare Services | ||
Only public healthcare facilities | 57 | 55.3 |
Mainly public healthcare facilities (with some sporadic appointments in private services) | 46 | 44.7 |
Category | Macro-Category |
---|---|
1. Representation of health | Health and Body |
2. Body representation | |
3. Family stories | Relationship with Cancer and Other Diseases |
4. Individual stories | |
5. Stories of loved ones | |
6. Positive aspects | Health Facilities and Health Providers |
7. Negative aspects | |
8. Public healthcare vs. private healthcare | |
9. The role of the facility | The Affective Determinants of Cancer Screening Participation |
10. The role of health providers | |
11. Prevention and children | Partners and Children |
12. Prevention and couples | |
13. Emotions before the screening | Physical Sensations and Emotions in the Course of Action |
14. Emotions during the screening | |
15. Emotions after the screening | |
16. Physical sensations | |
17. Healthy behaviours | Protective Actions |
18. Spirituality | |
19. Preventive actions | |
20. Information | Promotion and Dissemination |
21. Actions for the community |
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González Leone, M.F.; Donizzetti, A.R.; Bianchi, M.; Lemmo, D.; Martino, M.L.; Freda, M.F.; Caso, D. Users’ Experience of Public Cancer Screening Services: Qualitative Research Findings and Implications for Public Health System. Behav. Sci. 2024, 14, 139. https://doi.org/10.3390/bs14020139
González Leone MF, Donizzetti AR, Bianchi M, Lemmo D, Martino ML, Freda MF, Caso D. Users’ Experience of Public Cancer Screening Services: Qualitative Research Findings and Implications for Public Health System. Behavioral Sciences. 2024; 14(2):139. https://doi.org/10.3390/bs14020139
Chicago/Turabian StyleGonzález Leone, Maria Florencia, Anna Rosa Donizzetti, Marcella Bianchi, Daniela Lemmo, Maria Luisa Martino, Maria Francesca Freda, and Daniela Caso. 2024. "Users’ Experience of Public Cancer Screening Services: Qualitative Research Findings and Implications for Public Health System" Behavioral Sciences 14, no. 2: 139. https://doi.org/10.3390/bs14020139
APA StyleGonzález Leone, M. F., Donizzetti, A. R., Bianchi, M., Lemmo, D., Martino, M. L., Freda, M. F., & Caso, D. (2024). Users’ Experience of Public Cancer Screening Services: Qualitative Research Findings and Implications for Public Health System. Behavioral Sciences, 14(2), 139. https://doi.org/10.3390/bs14020139