Assessment of Maternal Burden and Family Functioning of Children with Cancer: Mixed Method Study Abstract:
Childhood cancer unexpectedly impacts the dynamics of children and their families. This study aimed to evaluate maternal burden and family functioning on children with cancer. This is a sequential explanatory mixed method study, carried out with 30 parents of children with cancer, whose mean age was 33 years (standard deviation = 6.7). The data, collected with the Informal Caregiver Burden Assessment Questionnaire (QASCI) and the Family APGAR Scale, indicated financial (46.7%) and emotional (23.3%) burden, in addition to a high burden in personal life. (60%) and reaction to demands (63.3%) in the interviewed participants. Family APGAR indicated severe dysfunction in 13.3% of families, especially those in which the mother plays the main role. The complexity of the caregiver role, which requires a balance between emotional support for the sick child, financial management and daily activities, contributed to these rates.
Keywords: neoplasms; child; caregivers; evaluation study; family support
Resumo:
O câncer infantil impacta inesperadamente a dinâmica da criança e sua família. Este estudo teve como objetivo avaliar a sobrecarga materna e a funcionalidade familiar de crianças com câncer. Trata-se de um estudo de método misto explanatório sequencial, realizado com 30 pais de crianças com câncer, cuja idade média foi de 33 anos (desvio padrão = 6,7). Os dados, coletados através do Questionário de Avaliação da Sobrecarga do Cuidador Informal (QASCI) e a Escala de APGAR Familiar indicaram sobrecarga financeira (46,7%) e emocional (23,3%), além de alto nível de sobrecarga na vida pessoal (60%) e reação às exigências (63,3%) nos participantes entrevistados. O APGAR Familiar indicou disfunção severa em 13,3% das famílias, especialmente aquelas em que a mãe desempenha o papel principal. A complexidade do papel de cuidador, que requer equilíbrio entre o apoio emocional à criança doente, administração financeira e atividades cotidianas, contribuiu para esses índices.
Palavras-chave: neoplasias; criança; cuidadores; estudo de avaliação; apoio familiar
Resumen:
El cáncer infantil afecta inesperadamente la dinámica de los niños y sus familias. Este estudio tuvo como objetivo evaluar la sobrecarga materna y la funcionalidad familiar en niños con cáncer. Se trata de un estudio de método mixto explicativo secuencial, realizado con 30 padres de niños con cáncer, cuya edad promedio fue de 33 años (desviación estándar = 6,7). Los datos, recogidos del Cuestionario de Evaluación de la Sobrecarga del Cuidador Informal (QASCI) y de la Escala APGAR Familiar, indicaron sobrecarga financiera (46,7%) y emocional (23,3%), además de un alto nivel de sobrecarga en la vida personal (60%) y reacción a las demandas (63,3%) en los entrevistados. La APGAR familiar indicó disfunción severa en el 13,3% de las familias, especialmente aquellas en las cuales la madre desempeña el papel principal. La complejidad del cuidador que requiere un equilibrio entre el apoyo emocional al niño enfermo, financiero y los quehaceres contribuyó a estas tasas.
Palabras clave: neoplasias; niño; cuidadores; estudio de evaluación; apoyo familiar
Childhood or youth cancer is a lethal pathology with high rates of proliferation and invasive nature, as cancer symptoms appear unexpectedly (Dias et al., 2022 ). In this context, early detection of pediatric cancer is essential, considering that this disease is the second leading cause of death among children aged under 14 years worldwide (Wang et al., 2023 ). Moreover, cancer can occur unexpectedly, causing changes in the child’s and their family’s dynamics.
Therefore, parents who care for children with cancer had a challenging mission. The family must be willing to deal with and understand the situation, considering its members may give different meanings to illness and death, in accordance with beliefs, experiences, and religiosity. The family’s ability to care for its sick child may be compromised, diminished or absent, involving the roles and behaviors that need to be assumed among its members, even in spheres of promoting hope (Chaibub & Kohlsdorf, 2017 ).
The disease extensively impact family functioning, impairing daily task performance. Generally, the responsibility for taking care of the child falls on the mother, exposing her to many stressful factors, such as depression, sleep disorders, social losses, changes in the marital relationship, impact on healthy children, and reduced quality of life (Rodrigues et al., 2023 ).
In this context, the Family Management Style Framework (FMSF), the theoretical model used in this study, has been widely used to analyze chronic condition situations in different contexts (Mendes-Castillo et al., 2014 ). The term “family management” is better known in the United States than in Brazil, where its concept involves the family’s active response to illness and healthcare. Developed in 1990 by Kathleen Knafl and Janet Deatrick, the model was initially created to understand the family’s role in caring for children with chronic diseases (Knafl & Deatrick, 1990 ).
Based on this and considering the family as a unity, the FMSF aims to identify the crucial aspects of its response to one of its members’ disease. This model consists of three main dimensions: definition of the situation, management behaviors, and perceived consequences. Definition of the situation refers to the family’s perception of the sick member and the disease. Management behaviors encompass the principles that the family uses to establish a routine to deal with the disease. Perceived consequences are the real or expected results that influence behaviors and, consequently, impact the definition of the situation (Gesteira et al., 2020 ).
In this context, a study by Felizardo et al. ( 2022 ) carried out in two reference maternal and child healthcare hospitals in Belo Horizonte, state of Minas Gerais, Brazil, using the FMSF, highlighted their ability to understand the families’ experience in caring for children with chronic conditions in the first years of life.
In this way, by understanding the characteristics of the chronic condition provided by the FMSF, family members are able to identify permanent changes in the child and develop autonomy to perform their functions. Together, family members seek to achieve balance and control in the face of care demands, which allows them to view their situation as “normal” on some occasions.
The aforementioned concepts, which include discussions about maternal burden and family functioning in the context of children with cancer, underpin this study. In this sense, this research had the following questions: What are the burden levels that the mother, as the main caregiver of the child with cancer, experiences? What is the relationship between maternal burden and the family functioning of children with cancer?
Therefore, the general objective of this study is to evaluate maternal burden and family functioning regarding children with cancer. To achieve such objective, the following specific objectives were defined: to identify the level of maternal burden of children with cancer; to investigate the type of family relationship of children with cancer using the family APGAR; and to analyze the burden levels of mothers of children with cancer in the light of the FMSF model.
Method
This is a mixed method study, with a sequential explanatory design (QUAN → qual), in which quantitative data were collected and analyzed in a first stage, followed by the qualitative data collection and analysis of the initial quantitative results. This type of study enables understanding a phenomenon through a link between quantitative and qualitative research, considering that comprehending the phenomenon cannot be achieved only by one of these approaches (Lorenzini, 2017 ).
Participants
A total of 30 parents of children with cancer were included in the study, with a mean age of 33 years ( SD = 6.7), followed at a pediatric oncology service, located in the Northeast region of Brazil. To be included in the research, parents had to be aged 18 or over and be parents of a child with cancer. Exclusion criteria were parents of children with other diseases; parents with difficulty in understanding the instrument questions in Portuguese (native language), and parents of children who were diagnosed with cancer within the past 30 days. Among the participants, 16 (53.3%) were single, 10 (33.3%) were married or in a steady union, 18 (60%) had completed high school, and 23 (76.7%) were unemployed.
Instruments
The Informal Caregiver Burden Assessment Questionnaire (QASCI), developed in Portugal by Martins et al. ( 2004 ), already adapted for and validated in Brazil by Monteiro et al. ( 2015 ), assesses in detail and comprehensively the different aspects related to the informal caregivers’ physical, emotional, and social burden.
The QASCI encompasses seven dimensions: Implications for personal life (IPL), composed of 11 items, ranging from 11 to 55 points; Satisfaction with the role and the family member (SRFM), composed of 5 items, ranging from 5 to 25 points; Reactions to demands (RD), composed of five items, ranging from 5 to 25 points; Emotional burden (EB), consisting of four items, ranging from 4 to 20 points; Family support (FS) consisting of two items, ranging from 2 to 10 points; Financial burden (FB), consisting of two items, ranging from 2 to 10 points, and Perception of efficacy and control mechanisms (PECM), consisting of three items, ranging from 3 to 15 points (Martins et al., 2004 ).
The QASCI is composed of 32 items evaluated by an ordinal frequency scale that ranges from 1 to 5 points, with 1 (no/never), 2 (rarely), 3 (sometimes), 4 (almost always), and 5 (always). The level of burden can be classified according to five categories, by the following ranges: 75–100 (extremely severe burden); 50–75 (severe burden); 25–50 (moderate burden); 1–25 (slight burden), and 0 indicates that there is no burden (Martins et al., 2004 )
To determine the QASCI reliability, Cronbach’s alpha was used, which demonstrated good adequacy in all domains of the adapted version, both for the seven-factor model and for the alternative six-factor model, except for PECM (α = 0.33). The original short Portuguese version presented internal consistency values from “acceptable” to “good” for all domains: EB (α = 0.66); IVP (α = 0.7); IPL (α = 0.82); RD (α = 0.67); PECM (α = 0.67); FS (α = 0.77), and SRFM (0.59) (Martins et al., 2015 ).
In the long version adapted for Brazilian Portuguese, the alpha values for the respective domains ranged from 0.88 (implications for personal life) to 0.51 (perception of efficacy and control mechanisms), but a 0.92 Cronbach’s alpha was obtained for the scale as a whole (Monteiro et al., 2015 ).
The Adaptation, Partnership, Growth, Affection and Resolve (Family APGAR) scale was developed by Smilkstein in 1978 and quantifies the respondent’s perception of their family’s functioning. The name of the instrument is an acronym between the five variables it evaluates: adaptation, partnership, growth, affection, and resolve (Smilkstein et al., 1982 ).
Family APGAR enables three types of response: almost always (2 points), sometimes (1 point), and almost never (0 points). The final scale result is obtained by adding the scores assigned to each of the questions and ranges 0–10 points. The final score enables classifying the type of family relationship: 7 to 10 points (highly functional family), 4 to 6 points (family with mild dysfunction), and 0 to 3 points (family with severe dysfunction) (Smilkstein et al., 1982 ).
Cronbach’s alpha was used to determine the reliability of the Family APGAR, via item discrimination coefficient, and values from 0.20 onward were considered satisfactory. Using the value of Cronbach’s alpha with the item suppressed the value of 0.70 was applied as a cut-off point to consider a measure with satisfactory internal consistency (Cortina, 1993 ).
Procedure
Data collection. Quantitative data were collected with the QASCI, and the family APGAR scale was used to analyze the association between the independent quantitative variables and the dependent variable of the study (QASCI total score).
Convenience sampling was employed. Parents of children with cancer who were accompanying their children at the outpatient clinic, medication room, and wards of the pediatric oncology service in Recife (PE) were invited to participate in the study. When approached by the researcher, the study objective was explained and an informed consent form presented, which should be signed to take part in the study.
The instruments were applied once by a single researcher at wards and at the health service outpatient clinic, lasting about 20 minutes. During data collection, every care was taken to ensure that parents answered the QASCI and family APGAR without any harm. Data collection was carried out throughout March 2022.
The qualitative study was designed as being of a descriptive-exploratory nature. Qualitative data were collected via semi-structured interviews, carried out in depth, associated with document analysis, which, when triangulated, formed the families’ content analysis. The interview scripts followed the three conceptual Family Management Style Framework component dimensions (definition of the situation, management behaviors, and perceived consequences).
Data analysis. Data analysis was performed using the content analysis method. The methodological procedure was done by completing the phases of the content analysis proposed by Bardin, namely: pre-analysis of the collected data, exploration of the material and reliable reading, and categorization and treatment of the results displayed in the corpus (Bardin, 2011 ). At this stage, the data were also analyzed in light of the FMSF.
The data were entered into the public domain Excel ® 2016 Software and analyzed using the Statistical Package for Social Science (SPSS ® ) software version 22. Then, the researchers carried out the descriptive analyses and verified the measures of central tendency for numerical variables (mean and median), absolute and relative frequency for qualitative variables, and measures of dispersion or variability (standard deviation).
In addition to SPSS ® , the R Project 3.4.2 software environment and the Pearson correlation coefficient were also used to assess family dysfunction, verified based on the family APGAR score, which is associated with a greater caregiver burden. A p-value < 0.05 was considered significant to reject the null hypothesis that there is no relationship between APGAR scores and QASCI scores. Categorical variables were expressed as absolute and relative frequencies, and numerical variables were expressed as mean and standard deviation.
Shapiro-Wilk normality tests were performed to assess whether the data followed a normal distribution. As the hypothesis of normality was rejected — indicating that the data did not follow a normal distribution — the option was to use nonparametric statistical tests, such as the Mann-Whitney U test for comparisons between two samples, or the Kruskal-Wallis’ test for comparisons between three or more groups. The significance criterion adopted was a p-value < 0.05, indicating that differences between the groups are statistically significant and allowing for reject the null hypothesis of equality between the groups.
Ethical Considerations
The project was approved by the Research Ethics Committee, according to CAAE No. 46663821.9.0000.5192 and Opinion No. 5,201,192.
Results
Quantitative results. It was identified that the 30 participating caregivers were parents of children with cancer and aged from 19 to 44 years, with a mean age of 33 years ( SD 6.7); of these, 28 (93.3%) were female and two male (6.7%), that is, mothers are the main caregivers in this study ( Table 1 ).
Demographic data of parents of children with cancer from the pediatric oncology service. Pernambuco, PE, Brazil, 2023
In the QASCI analysis, the following response distribution was observed: Reactions to demands (63.3%); Family support (66.7%); Implications for personal life (60%); Perception of efficacy and control mechanism (53.3%); Financial burden (46.7%); Emotional burden (23.3%), and Satisfaction with the role and the family member (23.3%). ( Table 2 )
In Figure 1 , it is possible to see that 60.0% of families were classified as highly functional, 26.7% with mild dysfunction, and 13.3% with severe dysfunction.
In Table 3 , participants expressed their perception of satisfaction in various aspects of family support. Notably, most participants reported being “almost always” satisfied with the support they receive from their family in times of need (60%), and with the participation offered by the family (60%). Furthermore, the majority also expressed being satisfied with the way their family expresses affection and responds to their emotions (66.7%). However, there was lower satisfaction in relation to family sharing of time, space and financial resources, with the majority of participants indicating that they were “almost always” satisfied in these areas (70%).
Using Pearson correlation analysis, it was assessed whether there is a linear relationship between the QASCI score and the APGAR. As shown in Table 4 , the greater the family dysfunction, the greater the burden in relation to reactions to demands ( r −0.379; p-value: 0.039) and family support ( r −0.799; p -value < 0.001).
Qualitative results. In the qualitative analysis, thematic categorization of the content itself inserted in the parents’ speech was carried out using systematic and categorical techniques, following the phases of Bardin’s content analysis. Based on this analysis, three categories defined a priori were created:
Category 1 - Feelings experienced by parents of children with cancer
In this category, the main feelings reported by parents during their child’s daily hospitalization and treatment were helplessness and denial, as demonstrated by M01: “[…] of course we want a cure, but we also have to think about reality, it’s an uncertain thing no matter how much we vibrate each little step, but you always live with that uncertainty, unfortunately. So his future is uncertain, I’m not going to fool myself because this fear is always lurking. This is how things work, I can’t just close my eyes,” and M05: “ah, her father even went to the psychologist after this problem, he’s got a psychological issues then tried to kill himself at home, when you receive the diagnosis you don’t expect it, right? When you receive it, you don’t want to believe it, you don’t accept it.” M03 also reported that sadness is present daily in her life “sometimes it’s sadness, right? And sometimes it’s happiness, sadness for what happened and happiness because he’s alive, right?”
Category 2 - Dynamics of care provision: routine of parents of children with cancer
This category revealed a restructuring process in family management over time, because since the child’s diagnosis was given, the family began to face the new disease context.
The inclusion of additional tasks necessary to care for children with cancer affected the routine of caregiver mothers, resulting in the need to adapt to the new reality. M11 and M12 reported that they distanced themselves from their own households, social life, and job to change the daily activities of the child and family. M11 states that: “the routine has affected me a lot because it changed everything; I used to go out a lot, today not anymore; I went out carefree, now I just go out worried, I worked, I had side hustles, today I just want to dedicate myself to him”; M12 states that: “we dedicate ourselves exclusively to him, so everything changes.”
Category 3 - Meanings attributed by parents about the future of the child with cancer
This category presented the meanings that were attributed by parents of children with cancer about their future, indicating spirituality as the most recurrent meaning in the interviewees’ statements. Notably, M25 repeatedly highlighted in her interview the importance of religiosity as a way of facing with the situation:
“I don’t even have expectations for what I see, because [seeing it with] my eyes are one thing, but God sees beyond that, you know? So I trust God a lot, you know? God is in control and will continue, His expectations are much higher than mine, so I can’t even say what it is, because if I say what it is, I’ll tell you, I’ll see him (son) with his life very normal, but I know that God will do more, understand? That’s why I don’t even have expectations, it’s in His hands and I know I won’t be frustrated, that God is God, right? We respect the physician’s techniques, but everything is Him.”
Discussion
Caring for children with cancer causes countless transformations in the family system, meaning changes at emotional, social, financial, family, and personal levels. Therefore, all family members must adapt to the new reality, as they are an important source of support in the health-disease process (Marques, 2017 ). In this way, parents become indispensable in caring for their child (Paula et al. 2019 ).
Nevertheless, this study indicates the female predominance; 28 (93.3%) out of the 30 parents interviewed were mothers, and only two (6.7%) were fathers. This corroborates the findings of other studies on caregivers of children with cancer, which indicates the mother as the main caregiver (Barroso et al., 2017 ). In most families, family functioning is centered on mothers and, given the need to care for the child and control the chronic disease, they need to adjust their family functioning and seek family homeostasis (Faro et al., 2019 ; Torquato et al., 2020 ).
One of the main study findings was the identification of the emotional burden (23.3%) faced by mothers, who mostly assume the role of caring for children with cancer. This burden is the result of significant changes in their routine, which require them to give up work, studies, social life and, not rarely, distance from their family. In addition, mothers perform a series of care tasks, both at home — such as food and hygiene — and at the hospital — including administering medication, applying dressings, and accompanying hospitalizations. They also experience feelings of denial, stress, anger, and anguish, among others, which can trigger psychological problems (Pinheiro et al., 2021 ).
A study by Vieira and Cunha ( 2020 ), carried out in a reference hospital for pediatric oncology care, in São Paulo, Brazil, points out that emotional burden is the most complex condition experienced by mothers caring for children with cancer. Corroborating the findings of this study, the emotional burden of mothers is the result of their feelings or expectations and unfulfilled desires, faced with their child’s diagnosis or care (Vieira & Cunha, 2020 ).
According to the participants’ statements, difficult moments during hospitalization can lead to feelings of denial, especially when the chances of a cure are almost nonexistent, noting that the negative prognosis generates feelings of helplessness in parents. It refers to the study by Santos et al. ( 2021 ), in which the grieving process experienced by the family creates difficult memories that can last for years.
Regarding financial burden, it was observed that 76.7% of participants were unemployed, similar to the results obtained in studies by Barroso et al. ( 2017 ). Caring for children with cancer is complex, permeated by trips to and from hospitals, sometimes requiring travel to other cities for outpatient care and/or hospitalization (Marques, 2017 ). Given this situation, working mothers need to leave their jobs to dedicate themselves exclusively to their children, as they are unable to balance their travel routines with work (Torquato et al., 2020 )
In this way, the family that previously could count on the couple’s income, must rely exclusively on the father’s wage. This leads to financial burden due to the mother’s losing her job; besides, expenses are added with the child’s treatment, such as purchasing medication, transport, and food (Costa et al., 2018 ). Furthermore, healthy children also suffer this impact, as all income is directed to caring for the sick child to the detriment of the healthy ones (Marques, 2017 ).
A study by Atwiine et al. ( 2021 ), carried out at a Regional Reference Hospital for Pediatric Oncology, located in Southwest Uganda, Africa, shows that 65% of mothers experience financial difficulties. Confirming the findings of this study, the difficulty was attributed to several factors, such as the costs associated with the treatment of childhood cancer, which often include expenses with medications, medical procedures, exams, and hospitalizations.
The analysis of financial and emotional burden revealed other dimensions, such as the possible severe family dysfunction resulting from the child with cancer. Lack of financial resources and emotional stress can create a tense and challenging family environment, which may compromise the ability to cope collectively and effectively. This in-depth analysis can help identify areas of intervention and family support needed to reduce the negative effects of the disease on family dynamics.
According to the results of the Family APGAR Scale, 10 (60.0%) families were classified as highly functional, six (26.7%) as with mild dysfunction, and four (13.3%) as with severe dysfunction. Thus, highly functional families are able to adapt more easily to changes in activities, while others need their problems to be diagnosed, for planning and appropriate interventions as soon as possible (Oliveira & Silva, 2020 ).
Based on this perspective, the deductive analytical process guided by the Family Management Style Framework allowed understanding the functioning of the families that participated in this study. This conceptual model emphasizes the interaction between how family members perceive (definition of the situation) and manage (management behaviors) their child’s condition, as well as the implications for family life (perceived consequences) (Martins et al., 2015 ).
Initially, when defining the situation, the parents attributed to their children characteristics similar to those of other children of the same age, considering them normal, despite the limits that cancer imposes on the child. Such identification is probably based on the inherent infantile condition of these patients, due to the fact that they are often unable to express themselves clearly and define the location and amplitude of symptoms, especially pain, which only becomes evident from the first clinical manifestations. In this way, from the family’s first experience with the symptoms, when the disease becomes visible, parents realize the need for new articulations in the family to dedicate themselves to the child that will need more intense care.
Furthermore, it was observed that families’ management behaviors adapted over time in response to the children’s symptoms, complications, and care needs. These adaptations were influenced by the strategies adopted to treat children, including medical consultations, exams, adequacy of nutrition and hydration, in addition to the use of medications.
The consequences of these changes were noticed in the care routine, which often overloads the family system, especially the mother, who assumes the roles as main caregiver. As some studies indicate, this burden can result in a decreased quality of life for these caregivers.
Supporting this study outcomes, identifying the mothers’ burden, another study by Misko and Bousso ( 2007 ), which used the same framework (FMSF), points out that mothers assume a sense of responsibility to provide the best care for their child together with the healthcare team. Mothers see themselves as “key players” throughout the disease process. When the mother is faced with the impossibility of a cure, she seeks the child’s well-being, and the main goal becomes to alleviate the child’s suffering.
Spirituality emerged as an outcome of great importance in this study, highlighting its fundamental role in the journey of parents facing childhood cancer. It was observed that faith plays a significant role in emotional balance and disease acceptance, providing a strength source to face the challenges associated with treating their children. Many families consider spirituality a way to seek meaning, seeing death as a manifestation of divine will and a transition to a new existence. This spiritual approach offers comfort and helps face uncertainties about the child’s recovery, being a valuable strategy for dealing with the challenges they face (Farinha et al., 2023 ).
A study carried out in Brazil with eight informal caregivers of children with cancer, aged 26 to 38 years, revealed that belief in something divine is the most common strategy for coping with the treatment of childhood cancer. Caregivers set their hope in God and acknowledge their limitations in the face of their child’s illness. In fact, religiosity and spirituality are perceived as sources of comfort for informal caregivers, providing them with tranquility and peace, which helps alleviate stress. Furthermore, it is considered the most effective method for dealing with the various difficulties in life, including cancer treatment (Cunha & Penso, 2022 ).
Regarding family care, nurses must identify that caregivers also need assistance to face moments of sadness. It is noteworthy that dealing with the reactions of families who experience the child’s hospitalization process due to cancer requires comprehensive and assistive approach from nurses. As long as the focus of care is directed solely to the child, the family’s demands will not be addressed, especially regarding the exposure of their feelings (Souza et al., 2021 ).
Although the quantitative results showed emotional and financial burden in half of the research participants, caregiver mothers reported changes in their daily lives, which highlights the duality in their recognition. This study offers guidance for parents who need additional support, especially mothers, the predominant caregivers in this research. It is also necessary to recognize possible stressors and support networks available to parents to assist health professionals in supporting caregivers.
Based on the qualitative data results, it was possible to identify that caring for children with cancer triggers a series of transformations in family management. These changes cover several aspects, including emotional, social, financial, family, and personal aspects, impacting all family members. Mothers, in particular, play a crucial role in caring for their children during this process.
The joint analysis of these aspects reveals how family dysfunction can be exacerbated by the child’s disease. The lack of financial resources and emotional stress can create a tense and challenging family environment, compromising the family’s ability to face the situation collectively and effectively. This more in-depth analysis can help identify areas of intervention and family support needed to reduce the negative disease effects on family dynamics.
Despite the challenges imposed by the COVID-19 pandemic during data collection, it is understood that semi-structured interviews have potential, especially regarding qualitative studies in the context of social distancing imposed by COVID-19, as they are one of the few alternatives in the current scenario, in addition to the possibility of investigating various topics present in the lives of people and families who suffer because of their child’s disease.
The absence of validated instruments to research little explored topics, such as the one in this study, can be pointed out as a limitation of this study. Furthermore, the sample is small, as the participants are part of a very specific population, characterized by low income and low education. Another limitation is the use of the theoretical model, which is rarely used in pediatric oncology. However, recognizing these limitations can also serve as an opportunity to identify new gaps in the literature and, consequently, new investigations.
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How to cite this article:
Avelar, A. E. A., Gomes, B. M. R., Delgado, F. A., Oliveira, R. C., França, J. R. F. S., & Brandão Neto, W. (2024). Assessment of maternal burden and family functioning of children with cancer: Mixed method study. Paidéia (Ribeirão Preto), 34, e3416. doi:https://doi.org/10.1590/1982-4327e3416
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Article derived from the master’s thesis of the first author under the supervision of the second, defended in 2023, at the Graduate Program in Nursing of the Universidade de Pernambuco. Support: Coordination for the Improvement of Higher Education Personnel - Brazil (CAPES) - Process number 88887.675912/2022-00.
Edited by
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Associate editor:Wanderlei Abadio de Oliveira
Publication Dates
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Publication in this collection
08 Nov 2024 -
Date of issue
2024
History
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Received
30 Oct 2023 -
Accepted
16 Apr 2024 -
Reviewed
11 Apr 2024
Note. Prepared by the authors (2023).