Abstract
Background:
Cancer diagnosis and related treatment can limit young patients’ privacy. Their need for private physical and psychological spaces can be impeded by limited freedom, e.g., sharing hospital rooms with others and exposing their body to their parents and doctors.
Methods:
We conducted a survey among young patients of our center to investigate how their perception of privacy changed after being diagnosed with cancer and their need for hospital dedicated physical spaces and time for patients to enjoy their privacy. A questionnaire with 16 items was developed by the staff involving psychologists and physicians. The relevance of changes before and after the cancer diagnosis was assessed by calculating two scores indicating the situation before and after diagnosis for each answer, as well as a delta score.
Results:
Between May and June 2020, the questionnaire was completed by 60 patients aged 16–24 years. The median delta scores describing the changes before and after diagnosis were −8 points for perception of privacy, indicating a significant decrement of the level of privacy perceived. A major issue was the constant presence of parents being perceived as intrusive. Concerning hospital dedicated physical spaces and time for patients to enjoy their privacy, respondents requested dedicated spaces (50% of patients) and opportunities to have private interviews with medical personnel (88%).
Conclusions:
Our study offers a snapshot of how young people with cancer perceive the impact of the disease and its treatment on their privacy with the restrictions imposed on their individual freedom. Patients’ personal needs must be taken into consideration to adopt appropriate measures and better organize wards.
Introduction
Adolescents and young adults with cancer have unique emotional, psychological, and social needs stemming from the onset of disease at a critical age, when adolescents usually face the developmental challenges of establishing their identity, social relationships, and independence.1–3 Among the various psychosocial issues that arise, privacy needs and perceived intrusions into personal life are important. The illness and its treatment, often protracted over many months, can limit patients’ privacy, in the sense of their need to have private spaces (both physical and psychological) and to feel respected and unrestrained. 4 During their treatment, adolescent patients often have to share a hospital room with other patients and their families. They have to expose their body to doctors or nurses, often in the presence of their parents. They frequently need to accept having their father or mother take over aspects of their personal care that they are unable to manage without help. They have to follow medical recommendations and cope with parents’ concerns that limit their freedom (or their perception of it). Respect for physical and psychological privacy should be an essential component of cancer care of young people. It is important for health professionals who deal with young people to understand the importance of these issues and respond effectively to patients’ needs during their treatment.
With these issues in mind, we conducted a fact-finding survey among the adolescents and young adults with cancer participating in our Youth Project, exploring their privacy needs. The Youth Project at the Pediatric Oncology Unit of the Istituto Nazionale Tumori in Milan 5 is a scheme dedicated to adolescents (15–19 years old) and young adults (up to 25 years old), with the double aim to optimize clinical aspects of patient care (such as inclusion in clinical trials) 6 and to promote a life as normal as possible by providing patients with age-specific spaces and organizing suitable activities that give them opportunities to socialize and to express their thoughts and feelings.7–15 This article reports the results of the survey, with the aim to clarify any changes in how young people with cancer perceived the private sphere since starting their course of treatment.
Methods
A questionnaire was developed by the Youth Project staff (psychologists and physicians) to explore the matter of privacy. The questionnaire was designed to investigate how young patients’ perceptions of their private sphere changed after being diagnosed with cancer and starting to receive treatment; in addition, the survey aimed to evaluate the patients’ needs for specific physical spaces and time to enjoy their privacy. The goal was to pinpoint the issues they considered most crucial in order to adopt appropriate measures to cater to the needs they expressed.
The first part of the questionnaire (questions from Q1 to Q10) focused on changes in the respondent’s perception of privacy (PP) from before to after being diagnosed with cancer. It was in the form of pairs of questions for direct comparison, e.g. Q1: Before becoming ill, how much do you think your parents respected your privacy (e.g. not interfering in your private life)? Q2: Since being diagnosed with cancer and starting your treatment, how much do you think your parents have respected your privacy (e.g. not interfering in your private life)? Possible answers were not at all, slightly, moderately, very, and extremely. Two scores indicating the situation before and after being diagnosed were calculated from the patients’ answers.
The second part of the questionnaire (questions from Q11 to Q16) aimed to assess the need for hospitals to have dedicated physical spaces and time for patients to enjoy their privacy (HDSP).
Patients scored each question from 1 (not at all) to 5 (very much), so that a high score for PP indicated a patient’s strong perception of personal privacy and a high HDSP score indicated a strongly felt need for the hospital, for example, to have a dedicated physical space where patients could have some privacy.
All the scores were standardized to a span from 0 to 100 by dividing the sum of each respondent’s answers by the maximum possible total (the number of questions for each scale multiplied by 5), and then multiplying the result by 100. The association between pairs of questions was assessed with Fisher exact test. The relevance of changes between before and after the cancer diagnosis was assessed with the Wilcoxon signed-rank test for the null hypothesis of a median of zero on the distribution of the differences of all respondents (ΔPP). Statistical analyses were performed with SASTM (SAS Institute, Cary, NC) and R software (http://www.R-project.org/).
Patients’ characteristics (demographics and clinical variables) were collected separately, in a format not linked to the questionnaire. Due to the absence of linkage between patients’ characteristic data and the questionnaire, no direct association analysis was performed.
The questionnaire was administered to adolescent and young adult patients who had been receiving treatments for at least 2 months at the Pediatric Oncology Unit of our institution and those who had completed their treatments no more than 1 year previously. No other specific exclusion criteria were used. Patients were invited to complete the questionnaire during clinical visits or Youth Project activities. A staff member personally gave each patient a printed copy of the questionnaire and informed them about the aims of the study. The questionnaire was administered in an anonymous format and completed by patients in their own time and without any assistance or supervision on the part of staff members or parents, ensuring the confidentiality of all the data collected.
The questionnaire was approved by the Research Ethics Committee at the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy (code 150053 of the Italian National Observatory on Clinical Trials). All patients (or parents/legal guardians for underage patients) gave their written informed consent to their involvement in the study.
Results
Between May and June 2020, the questionnaire was given to 64 patients and completed by 60 (refusal rate 6.25%). The patients’ characteristics are described in Table 1.
Patient characteristics.
CNS: central nervous system.
Table 2 shows the paired distributions of the answers given to questions Q1–Q10, describing how the patients’ sense of privacy changed after being diagnosed with cancer. As shown in Table 3, the median (interquartile range [IQR]) ΔPP was −8 (−16; 0, p < 0.001) points, indicating a significant decrement of the level of privacy perceived.
Answers to questions Q1 to Q10 on changes in the perception of privacy from before to after being diagnosed with cancer.
Fisher Exact test.
Scores describing changes in patients’ perception of privacy and the need for hospitals to dedicate physical spaces and times for patients to enjoy their privacy.
IQR: interquartile range.
Wilcoxon signed rank test.
The worsening PP scores related mainly to the parents’ presence being perceived as interfering (Q1–Q2: while parents were not seen as interfering by 35% of patients before their diagnosis, this was true for only 10% afterwards) and limitations on the adolescents’ freedom (Q3–Q4: more than 80% reported experiencing few limitations before their diagnosis, as opposed to 50% reporting moderate to strong limitations afterwards). No major concerns emerged regarding the role of friends or for the impact of the cancer diagnosis on patients’ privacy in their social networks experiences or being uncomfortable with the need to submit to medical examination.
Table 4 shows the answers given to questions Q11–Q16 investigating HDSP. The median (IQR) score for HDSP was 63 (56; 70) points (Table 3). Respondents with higher scores on this issue generally advanced a request for dedicated spaces (away from parents and medical personnel, Q11: 50% of patients) and for opportunities to have private interviews with medical personnel (Q15: 88% of patients).
Answers to questions Q11 to Q16 on the need for hospitals to dedicate physical spaces and times for patients to enjoy their privacy.
The desire for a single room during their hospital stay and for more time without their parents’ supervision (Q12 and Q13: 55% and 50%, respectively, of patients requesting “more privacy”) were considered moderate needs, while the need for medical/nursing personnel of the same sex was less strongly felt (Q14: 75% of patients considered this unimportant or less important).
As for the last question (Q16), 93% of respondents answered that the issue of privacy should be taken into greater consideration during their course of treatment.
Discussion
Our study offers a snapshot of how young people with cancer perceive the impact of the disease and its treatment on their privacy. The need for privacy is a major component of the unique complex psychological mindset of adolescents and young adults who have cancer, which includes the development of self-image, identity, and independence; the need for age-appropriate information; communication challenges; shared decision-making; treatment adherence; fertility and sexuality issues, as well as behaviours of this age and risk-taking (including alcohol/substance abuse); spirituality; peer support and education aspects; and others. The need for patients to protect their personal life from intrusions is less discussed in the literature than other aspects.16–20 However, it remains a critical factor to help patients to be empowered to live as normal a life as possible.
The answers of our patients to this survey reveal the new limitations to their life that they experience after being diagnosed with cancer. To clarify the meaning of our results, an overall ΔPP of −8 indicates that our respondents feel a significant change in their sense of privacy from before to after their diagnosis. In particular, patients’ responses focused mainly on a lack of respect for their privacy, seen as limiting their individual freedom. One of the most significant issues they raise seems to be the constant presence of their parents, which is perceived as intrusive. The situation brought on by their illness coincides with a time when the adolescent patients had started to develop a sense of independence, but their diagnosis has obliged them to depend more on their parents again.
Patients’ need to defend their private life from intrusions and restrictions related to disease and treatment emerged also in the second part of the questionnaire. The answers indicate that what patients mainly need are dedicated private spaces. In addition, responses emphasize patients’ need for the opportunity to talk with their doctors alone (sometimes about delicate issues), to speak for themselves, and, ultimately, to be the leading actors in their stories.
When young patients advocate for dedicated hospital spaces and clinical management that respects their needs for privacy, it is imperative that health care systems address these requests, providing age-specific friendly cancer care and an environment designed around their needs (e.g. an age-appropriate environment with flexible visiting times and opportunities for young people to connect with healthy peers). Some of these aspects are addressed by various organizations, with specific recommendations and guidance for health professionals.21–23
Our study has various limitations. In particular, the demographic and clinical variables were not linked to the questionnaire and therefore were not analyzed, the sample size is limited, and the questionnaire is not validated.
Despite its limits, our study may stimulate discussion and raise awareness about a relevant aspect of young patients’ care. In organizing our wards, as well as in planning our clinical case management, we (as professionals who care for adolescents and young adults with cancer) must learn to listen carefully to what they have to say and address their requests. The last question of our survey shows that almost all of our respondents (93%) feel that the issue of privacy should be taken into greater consideration during the course of their cancer treatment. This sounds like a call for professionals to pay closer attention to the more personal needs of young people in their care.
To emphasize the importance of giving voice to young people with cancer, we conclude with a reference to the Tumorial project (a series of video tutorials produced by our patients to share their experiences) 24 and in particular to the video tutorial dedicated specifically to the matter of privacy (https://www.youtube.com/watch?v=wXbRw-UCRzg). In the video, Stella (a girl on the Youth Project) says: “You’re no longer seeking your own moment or your own space because the therapy imposes a certain rhythm, a specific day or place. You can’t do otherwise. You can’t choose your own way of doing things, because things have to be done in a way that is imposed or required of us. . .Defending what is yours, at a time when everything is taken away from you, is important and helps you feel stronger.”
Footnotes
Acknowledgements
The authors thank the Associazione Bianca Garavaglia Onlus.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
