Perception of Pediatric Oncological Patients and Their Parents/Guardians about a Hospital Oral Health Program: A Qualitative Study

Background: The oral healthcare offered to pediatric cancer patients at the hospital level must include educational and preventive strategies based on dialogical and welcoming professional attitudes. Therefore, the current study aimed to evaluate the perception of pediatric cancer patients and their parents/guardians about an educational and preventive oral healthcare program implemented in a reference hospital for cancer treatment. Methods: A qualitative follow-up investigation was conducted in which we evaluated the perception of pediatric cancer patients and their parents/guardians regarding an educational and preventive oral health program (OHEPP). The participants were 27 children and adolescents undergoing cancer treatment and their parents/guardians, and the assessment was carried out at 15 and 30 days after beginning the program through semi-structured interviews. The program used audiovisual resources, storytelling and playful instruments for the oral health education of patients and parents/guardians. The interviews were then transcribed and the Discourse of the Collective Speech (DCS) technique was performed for data analysis. Results: Patients and parents/guardians reported improvement in oral hygiene habits and conditions. Patients reported greater enthusiasm for oral care and highlighted the recreational aspect of the program. Parents/guardians reported being more clear about oral changes and paying attention to the appearance of comorbidities resulting from anticancer treatment. Conclusions: This study suggests that implementation of the oral health program favored communication between health professionals, patients and their parents/guardians, expanding knowledge and generating behavior change in oral healthcare.


Introduction
prolonged hospital stays (França et al., 2018). Changes in daily dynamics can impact self-care, making it difficult to maintain adequate behaviors to maintain oral health during antineoplastic treatment (Cheng, 2009). In this scenario, the importance of the dentist's role in the oncology team is evident, as it is possible to minimize oral complications resulting from antineoplastic therapy through practicing routine oral care and early diagnosis of changes which can negatively impact cancer treatment (Velten et al., 2017;Ribeiro et al., 2021). Regarding this aspect, we instituted a planned mouth care education program to pediatric cancer patients -Oral Health Education and Prevention Program (OHEPP) and it was effective to reduce the incidence of oral mucositis in these patients (Bezerra et al., 2021).
Therefore, this study aimed to evaluate the perception of pediatric cancer patients and their parents/guardians about this educational and preventive oral healthcare program (OHEPP) implemented in a reference hospital for cancer treatment.

Materials and Methods
This qualitative follow-up investigation was methodologically guided by the Discourse of the Collective Subject (DCS) method and it was conducted from April to October 2018. The Paraíba Federal University Research Ethics Committee approved the study (CAAE: 83179518.4.0000.5188). The Informed Consent Form (ICF) was applied to parents/guardians and the Informed Assent Form (IAF) was applied to patients over twelve years of age. This article follows the COREQ (COnsolidated criteria for REporting Qualitative research) Checklist (Tong et al., 2007).

Study setting
The Hospital Napoleão Laureano (HNL) is located in João Pessoa, a city located in the northeast region of Brazil. Approximately 392,278 outpatient visits and 5,509 outpatients are performed annually at this location. The hospital has an operating room, clinical and pathological analysis laboratories, radiology, radiotherapy, chemotherapy services, adult and pediatric ICU, outpatient clinic and adult and pediatric wards. The pediatric ward has 21 beds and the pediatric ICU has six beds.

Study participants
The population consisted of all cancer patients receiving care in the pediatric sector of the hospital from April to October 2018, their parents/guardians. The research subjects included in the study were patients aged 4 to 19 years undergoing cancer treatment and their parents/guardians, who had to be present during the data collection period. Patients with compromised health status (n=9) or who did not consent to participate in the study (n=6) were excluded.
The research sample consisted of 27 children/ adolescents and 27 parents/guardians.

Study procedures
Individuals were approached and invited to participate in the study soon after hospital admission, or before the next chemotherapy cycle. The next day, they individually received an educational and preventive program in oral healthcare by a member of the research team (MEAS, female) who has extensive experience in caring oncopediatric patients at the hospital where the research was conducted. The participants were made known, prior to the study, that the researcher was a qualified dentist and a postgraduate student of health care.
Patients over 12 years old and their parents/guardians were invited to watch an educational video lasting approximately seven minutes. The video content covered the following themes: cancer treatment modalities; repercussions of chemotherapy and radiotherapy in the oral cavity; main oral problems related to cancer treatment; etiology, prevention and treatment of oral mucositis; guidelines on oral hygiene and the use of fluoride.
Patients over 12 years of age and their guardians also received inserts addressing the following topics: importance of dental monitoring of cancer patients; etiology, prevention and treatment of the main oral problems related to antineoplastic therapy; importance of oral hygiene; caries etiology and measures to prevent this disease; and oral hygiene guidelines. In the case of younger patients, oral health information was transmitted through storytelling and the use of playful instruments. The patients received a diary of oral care practices, in which they (or the person responsible) recorded their oral hygiene procedures performed each week, and a gold star was attached to the diary for each day that toothbrushing and tongue cleaning were performed at least twice. In addition, a card related to the patient's performance was filled with face stickers corresponding to the patient's conduct in that week. Oral hygiene orientation (OHO) was performed directly with each patient. Children and adolescents were asked to demonstrate how they normally Chart 3. Responses from Caregivers about the OHEPP standardized way during the study. Data collection took place in two stages with semi-structured interviews being conducted with patients and guardians 15 and 30 days after beginning the program, with the aim of providing knowledge of the changes implemented by it. Interviews were conducted by the same trained research (MEAS) who has a relationship established prior to interviews. However, it was made clear that she was conducting this study as an impartial researcher. The interviewer had experience in qualitative research methods and in working with childhood cancer patients in pediatric units. Interviews were audio-recorded and contained four open questions related to the perception of patients and guardians in relation to the program (Chart 1). Interviews lasted approximately five minutes and patients under 6 years old were exempted from responding. Transcripts were not returned to participants for review and no repeat interviews were conducted.

Analyses
The audio recording of interviews was transcribed, and one author (MEAS) coded the data. The speeches of interviewees were identified by the letter P (patient) or letter G (guardian) and the number of realizations of order, such as P1, P2, G1, G2 and beyond. The Discourse of the Collective Subject (DCS) analysis started with a thorough reading of the transcripts to identify recurring ideas, words, or phrases, and belief patterns were identified and each of the core ideas and their corresponding key expressions were extracted. Thus, the key expressions (KE) for each of the groups (patients and parents/guardians) were initially identified, and then the central ideas (CI) were extracted. Finally, with the sum of key expressions and central ideas, the synthetic discourses representing the collective subject discourse were constructed (Lefevre and Lefevre, 2005).

Characteristics of the sample
The study included 27 children and adolescents assisted in the Pediatric Oncology sector of Hospital Napoleão Laureano and 27 parents/guardians. The mean age of patients was 9.41 (±4.49) years. Table 1 shows the demographic and clinical characteristics of the children and adolescents who participated in the study.

Perception of patients and guardians in relation to OHEPP
From analyzing the interviews of patients in the periods of 15 and 30 days, the categories which emerged and the speeches representing these categories can be seen in Chart 2. Patients were asked in the second question during the interviews about how much they thought their oral health habits had changed from implementing the program. The answers could range from one to five, where 1 meant it did not change anything, and 5 meant it changed a lot. Is was observed that 47.1% (n=8) of the patients classified the change as 5, both in the 15-day period and for the 30-day period and 35.6% (n=6) of them classified the change as 4, while 41.2% (n=7) gave the change a grade of 4 for the 30-day period.
The patients' reports for the two evaluated periods suggest the positive impact of the OHEPP on oral hygiene habits. Changes in brushing frequency and technique were mentioned, as well as the recreational aspect of the program for children and adolescents. Thus, some main themes emerged following the analysis and Chart 3 illustrates the categories and reports of the guardians for the periods of 15 and 30 days.
Parents/guardians also considered the positive impact of the program, both on the patients' oral hygiene habits and on the improvement in oral mucositis. They mentioned that the patients were more stimulated and cooperative after the playful activities were developed, and they themselves were more informed and attentive to the prevention of oral mucositis and other health problems. When caregivers were asked about the perceived change in the patient's oral health habits (question 2) within 15 days, 59.3% (n=16) of them classified the change as 5, while 60.0% (n=15) gave the change a grade of 5 for the 30-day period. Moreover, 29.6% (n=8) and 32.0% (n=8) caregivers classified the change as 4 for the 15-day and 30-day periods, respectively.

Discussion
This study reveals that children and adolescents undergoing anticancer treatment need to more carefully look at oral healthcare, seeking individualized care. Strategies based on dialogue and welcoming professional attitudes are essential in oral healthcare from the perspective of expanding the knowledge of patients and their parents/guardians about possible changes in the oral cavity resulting from cancer therapy. Our study showed that the educational and preventive program implemented favored communication between the oral health team and the research participants, health professionals, patients and their parents/guardians. We emphasize that this approach is still little explored in the field of pediatric oncology.
Regarding the demographic and clinical characteristics of the study participants, it was found that patients with hematologic malignancies and who lived outside the capital/metropolitan area predominated. It is important to highlight that hematological neoplasms can have several consequences for the oral cavity, such as ulcers, petechiae, trismus, oral infections, bleeding and gingival hyperplasia (Francisconi et al., 2016). Leukemic cells have the ability to invade periodontal tissues, causing swelling, bleeding and gingival inflammation, characterizing the picture of leukemic infiltration (Mazaheri et al., 2017). These gingival changes cause fear in patients and their caregivers in relation to oral hygiene, and can be neglected (Cheng, 2009).
Another point to be highlighted is that patients living in locations far from the capitals face challenges for cancer treatment, including financial and transportation barriers. The large distances traveled to treatment centers can make traveling to specialized treatment centers a stressful process for patients and their guardians (Carneiro et al., 2015). The relationship with family and friends can also be affected by the physical distance imposed by cancer treatment, generating a psychological impact on patients and their families (Bakula et al., 2019). These emotional changes can impact self-care, pointing to the importance of instituting a program which encourages oral care during antineoplastic therapy.
Cancer treatment obviously imposes a change in the patients' lifestyle, generating restrictions in several aspects, and interfering with the child's most routine activities such as playing (França et al., 2018). The recreational activities carried out in the hospital environment are described by pediatric cancer patients and their caregivers as something positive, an important incentive and complement to regular care (Ljungman et al., 2016).
The lack of recreational activities at the cancer hospital is not only a frequent complaint from patients, but also from caregivers (Cheng, 2009;Jibb et al., 2018). From this perspective, the playful aspect of the program developed in this study facilitates involving children and adolescents in the proposed activities, giving them the opportunity to play while assimilating the topics covered. Patients mentioned that they felt better when adhering to the proposed oral care, also referring to the importance of the program for preventing oral mucositis and that they were even influencing their family members to adopt more adequate oral hygiene habits. Increased vigilance in relation to oral changes resulting from antineoplastic treatment is essential, and by maintaining oral care it is possible to minimize some oral complications and to provide comfort (Elad et al., 2018;Yavuz and Yılmaz, 2015). Early diagnosis and treatment of these complications can also prevent more severe conditions, with the potential to negatively affect cancer therapy (Ribeiro et al., 2021).
Oral health interventions and education are able to reduce the severity of oral mucositis in children and adolescents undergoing cancer treatment (Yavuz and Yılmaz, 2015;Ribeiro et al., 2021). These data corroborate the guardians' statements regarding the improvement in hygiene habits and in the patients' oral mucositis condition after implementing the OHEPP. Moreover, we emphasize that this oral health program reduced the risk of developing oral mucositis in pediatric oncological patients (Bezerra et al., 2021).
Pediatric cancer patients and their guardians often show signs of stress and psychological changes after diagnosis (Bakula et al., 2019) and these children and adolescents may demonstrate resistance to oral care (Cheng, 2009). In this logic, an educational and preventive oral health program becomes relevant as it encourages adopting good hygiene habits and oral health surveillance, preventing patients and guardians from neglecting these issues due to difficulties related to cancer treatment.
A qualitative approach study reported that children, despite being aware of the importance of oral care, sometimes neglected oral hygiene due to the discomfort associated with oral mucositis (Cheng, 2009). Parents described the oral hygiene moment as being stressful for their children and for themselves. Guardians also stated that the health team should carry out more activities to distract children from their oral mucositis. In addition, they mentioned the need for more information regarding this disease. Regarding this aspect, previous studies demonstrate that guardians and patients themselves refer to the need for more accurate information about cancer treatment and its adverse effects. The lack of adequate communication between the medical team and the family can be stressful and traumatic (Lyu et al., 2019;Robertson et al., 2019).
Thus, the OHEPP has a relevant informative character, as it clarifies the main oral manifestations related to antineoplastic therapy and the prevention and treatment forms, thus enabling both patients and caregivers to feel more enlightened and secure in relation to the course of treatment. Proving this aspect, the OHEPP was effective in reducing the incidence of oral mucositis in these in pediatric cancer patients (Bezerra et al., 2021).
It is important to emphasize that comparisons of the results of this study with those found in the literature were limited due to the scarcity of studies which assess the perception of patients and guardians about oral health programs implemented in the hospital environment. The few studies which have proposed to investigate the subject only assess the impact of oral health programs in a quantitative way, without considering the speeches of patients and their parents/guardians.
Considering the difficulty in measuring values and opinions quantitatively, this work demonstrates its relevance and uniqueness in analyzing the perspective of children and adolescents with cancer and their parents/ guardians on an educational and preventive oral health program, exposing their expectations and propositions in relation to the work developed.
Although our study produced relevant data, it had some limitations. One limitation is related to the restricted context of data collection and the cultural and geographic specificities of the participants and the study setting. It should also be considered that the young age of some patients and the low level of education of some parents/ guardians may have limited their ability to answer certain questions more clearly. However, the results of this study are relevant and represent an important source of information to guide developing and implementing oral care programs for children and adolescents undergoing cancer treatment, which may reflect in improved quality of life and have a positive impact in cancer therapy, reducing situations related to the increase in hospitalization time and an increase in treatment costs.
It is concluded that the OHEPP helped to improve knowledge and attitudes related to oral health, favored adopting and/or increasing the frequency of oral hygiene habits and provided increased surveillance in relation to the appearance of oral changes resulting from antineoplastic treatment for pediatric cancer patients and their parents/guardians.