DOI: https://doi.org/10.21203/rs.3.rs-2334121/v1
Home care for childhood cancer has recently gained acceptance in Sub-Saharan African countries including Rwanda. Home care may have positive implications for patients and their families, but it may also be burdensome to the caregivers. Little is known about the parents’ experience with home care in childhood cancer in Africa.
This study aimed to explore the experience and coping strategies of parents regarding home care of children diagnosed with cancer in Rwanda.
This study was qualitative using a phenomenological design. Ten participants (four key informant interviews and a focus group of six participants) participated who were parents of children diagnosed with cancer. Data were transcribed from audiotaped interviews, codes assigned to the content, and themes generated through thematic analysis using the Hycner version.
The study revealed negative experiences regarding challenges, and individual coping strategies of parents regarding home care. Identified themes concerning experience were Feeling helpless, knowing that giving home care was laborious, feeling overwhelmed, feeling inadequate, and feeling uncertain. Identified themes concerning coping were Reliance on spirituality to cope, Balancing my emotions, Getting my mind off the current situation, Keeping life as normal as possible, Rebalancing life, and Finding and accepting support from family and friends.
Childhood cancer is emotionally, physically, and psychologically draining for parents. However, the challenges experienced enabled the parents to discover personal strategies to cope with the demands of home care.
Cancer is the second leading cause of death worldwide, and children living with cancer in Sub-Saharan Africa face substantial deficiencies in care (1, 2). Each year, cancer develops in an estimated 400,000 children between 0–19 years, and raises medical, societal, ethical and psychological concerns (3, 4). The mortality rate is decreasing, and more children are living with chronic conditions over a long time. Children living with cancer not only receive care while they stay in hospital, but also benefit home care (5). The Pediatric Department of Kigali University Teaching Hospital admitted 81 children diagnosed with malignancies over a two-year period including 25 with Nephroblastoma, 20 with Lymphoma, and 11 with Leukemia. Providing care for these children imposed a large financial burden on the health-care system in terms of hospitalizations and staffing coverage, and on the children’s families who were affected because of their presence being required throughout the hospital stay (6).
Lengthy hospital stays affect children’s quality of life negatively, given that separation from siblings and playmates can be traumatic (7). Pediatric home care facilitates continuation of a normal life for children and their family members, which reduces the disruptions that may result from hospital admissions (8). However, home care of children with cancer can be a great burden for parents who have to take responsibilities of administering medication, managing symptoms and side effects, and taking care of the psychological wellbeing of the sick child (7). The parents are physically and emotionally affected, with increased risks of suffering depression, anxiety, social isolation and changing normal life routines (9, 10). Parents must develop coping strategies and will require healthcare support for home care tasks such as, handling central lines, managing symptoms, and monitoring side effects of chemotherapy (7).
When a child is diagnosed with cancer and starts home care, it can become the central focus of the family system, with a pervasive and stressful impact on all family members, including parents and healthy siblings (11). Parents reported that childhood cancer has an economic impact on the family through hospitalization costs and reduced opportunities for parents to work, (12, 13). Pediatric cancer hospitalization cost in the United States averaged $40,400, nearly five times higher than hospitalization for any other pediatric conditions ($8,100) in the year of 2009 (14). A study from the United Kingdom observed that 34.7% of working mothers left all paid employment when children were diagnosed with cancer, and another 28.7% reduced working hours (15).
The need for pediatric home-based care has increased due to technical and medical improvements and lengthened care time (16). Healthcare systems are largely accepting pediatric home care of children with cancer (11), and more children are being cared for at home. In Rwanda, following an uptake of home-based care of children with cancer, parents are confronted with increasingly high caregiving demands (6); however, little is known about their experience regarding challenges and coping strategies concerning their new tasks. This study aims to explore experiences regarding the challenges and coping strategies of the parents during home-based care of children after cancer diagnosis in Rwanda.
This study used a qualitative phenomenological design to explore parents’ lived experience and coping strategies with home care of their child with cancer. It was important to see how those experiences and coping strategies are interpreted by the parents. An interview guided questionnaire was used to ask the participants questions pertaining to research objectives during Key Informant Interviews (KII) and a Focus Group Discussions (FGD).
The study participants were recruited at the University Teaching Hospital of Kigali (CHUK), located in Kigali city, Rwanda. CHUK is the largest referral hospital in Rwanda, and has 445 beds with an average occupancy rate of 72% (17). Its pediatric services include a pediatric high dependency unit, a pediatric surgical ward, and pediatric oncology, and pediatric cardiology wards with a capacity of 8 beds each. The study population was parents whose children under 18 years’ had been diagnosed with cancer between one month and five years ago, and who have been taking care of their children at home for at least one month prior to any readmission or outpatient visit. Participants were recruited with respect to the concept of saturation, and people from all regions of the country were considered. Four key informants and one focus group of six respondents were selected using purposive sampling for the parents who were able to share their experiences.
The interview questionnaire was designed for the purpose of this study. Some questions were adapted from a study conducted in Trinidad with permission (18), and were pretested to have face and content validity for Rwanda. The questions were directed to the participant’s experiences, feelings, beliefs and convictions about taking care of their child with cancer at home. The interviews were carried out between May and June 2019 by two authors (GM and BN). Before starting the interview, each participant signed consent forms for participation and audio-recording. The researcher conducted all interviews with the four key informants and six participants in the focus group. Data were obtained about how the participants “think and feel in the most direct ways”. The interviews varied between 25 minutes and 30 minutes.
Thematic analysis was used to analyze data. To ensure validity and trustworthiness, three authors (GM, JN, JCN) participated in entire process of data analysis. All interviews were audio recorded, and the investigator wrote memos after each interview to reflect on potential biases and listened repeatedly to audio recordings to become familiar with the words and meanings of the participants.
The researcher identified and isolated participant statements into specific portions of meaning. As the units of meaning were selected, each was constantly compared to the previously selected units. All non-unique units were eliminated or joined with previous similar units. The researcher clustered the units of meaning to form themes. The researcher validated these themes by returning to each interview transcript to establish if the essence of the participant’s experiences has been captured. For any theme not representing the interviewee’s experience, the theme was modified to better fit the total inner “world” of the participants. The general and unique themes were extracted, and a composite summary was written and described the context from which the themes emerged. This summary served to transform the participant’s expressions into terminology fitting for academic and scientific discourse.
Key informants interviewed included two men and two women, aged between 34–49 years. All were married and had other children living at home with the children with cancer. Men were farmers while women were not employed. Participants in the focus group included four women and two men, between 25–40 years old. All participants were married.
Five themes regarding challenges and experience of parents regarding home care of children with cancer were identified: feeling helpless, knowing that caregiving at home is laborious, feeling overwhelmed, feeling inadequate, and feeling of uncertainty.
The process of getting information that the child was suffering cancer and was about to be discharged home had effects on parents’ emotions. The parents felt helpless and worried about not being able to keep the children from suffering at home. After children had been in the hands of a healthcare provider, the parents wondered what was going to be happening at home. “I needed more explanations when I was told that I was about to be doing what doctors used to do to help my child. All of those seemed like a foreign language, and I was not hearing anything. That was stressful, and when my family asked me questions; I didn’t know what to tell them, because I didn’t know what it was.” (KII).
Parents noted that despite medical attention when the children were admitted, parents felt like the kind of support they got was limited during their hospital visits. Some parents expressed that their needs were not recognized, and they did not receive adequate support to help them overcome the cancer situation. “Can you imagine that when they told me that it was too late for chemotherapy to work that I needed to go home for continuation of other care?” (KII).
Becoming a parent caregiver was like a second full-time career to parents as giving home care had become the priority in their life. The parents were physically and emotionally exhausted. They reported that the normal living routines changed, and their lives were more restricted. Parents explained how their life had been ignored, as they focused all their attention on caring for the child. “I used to be able to go out in the morning for farming, now I’m always at home or in the hospital.” (FGD).
The parents felt overwhelmed by the child’s potential future. As the parents went through hardship, they described that it seemed as if they could not get a rest. They were also reluctant to take a break because it made them feel guilty. As a consequence, they missed participating in social activities. “I felt irresponsible for wanting to take a break. If I was not there for him, who was going to be?” (FGD).
A feeling of inadequacy was also evident as many parents felt that they had never done enough to satisfy or meet their children’s needs especially as the patients’ demands increased. The information about cancer and its treatments they received from healthcare providers was not adequate. Without enough knowledge and training, the parents felt that they could not provide adequate and appropriate home care to their children. The parents’ needs included information and emotional support. “After going back home, I did not know how I would be dealing with my child’s pain. I remember one doctor told me how I will be giving medication, but I didn’t memorize it at the time.” (KII).
The everyday life for these parents was filled with feelings of uncertainty about the future. The parents felt that if they knew the effects of treatments or understood the process of treatments, they should have been able to make the best choice for their children. They also found that it was difficult to deal with their child’s behavior. For those who were on chemotherapy, they could not predict whether the result of the next examination would be good or bad. Many parents expressed a sense of urgency even when the results of testing were good. “I still go to hospital after every three weeks, but I don’t know when my child will die or be cured. What the outcome will be.” (KII).
Six themes regarding coping strategies were identified: reliance on spirituality to cope, balancing my emotion, getting my mind off the current situation, keeping life as normal as possible, rebalancing life, and finding and accepting support from family and friends.
Parents turned to religious belief as the source of comfort and strength to deal with their inner grief. When parents felt hopeless, praying was one way to strengthen their courage. “I realized that God was still there despite the tragedy, it brought me closer, I realized that my faith in God was strengthened, I was strengthened and increased others faith.” (FGD). Some parents were not part of a congregation, but acknowledge God as a powerful source of life, and a mighty being who is above all. “I don’t go to church so often, but I pray. I am now learning to cope with the goodness and badness” (KII).
Parents expressed that having a child living with cancer was emotionally draining, and they needed to consciously balance the positive and negative aspects of their lives. The parents who accepted the situation tended to adjust to the consequences of home care giving, and they were not burned out during the homecare giving process. In contrast, those who avoided the fact their child was seriously ill often guarded themselves from cancer-related situations. “Since I didn’t do anything wrong, I should accept this condition” (KII).
The parents found when they felt overwhelmed, frustrated, and exhausted by home caregiving roles and dealing with the cancer effects, getting their thoughts off an unpleasant situation helped them to balance their emotions and recover their strength. When the parents had no other activities to work on, their anxiety was the highest; therefore, they tried to stay busy. The parents who accepted the situation used activities such as going to visit family members, therapy, praying, self-reflection, going for farming, music, and exercise to recover their physical and psychological strength. “I get up and get something done, it distracts me a bit, that’s my cure for everything, if there’s something that I feel I can’t change.” (FGD).
After a few months of giving home care, some parents were trying to keep their lives as normal as possible. They were aware that the life together with their child with cancer was very short, and they were not certain about the limited period of time. “Despite the situation we are currently living in as a family, we need to continue living and take care of other children.” (FGD). When parents felt physiologically and psychologically exhausted, they realized that they needed a break—time to do something else for themselves. “You’ve got to make it happen yourself…other people aren’t going to look after you; you look after your own self and get on with it.” (FGD).
Rebalancing life was important because often, the needs of children with cancer were the priority and the parents put themselves last. As a consequence, they forgot to take care of themselves. To find balance, the parents described the importance of looking after themselves. “It’s utterly important to take care of myself and make sure that I’m healthy, so that I can take care of my child” (FGD).
The parents described the importance of having family and friends and accepting help from others. When the parents were overwhelmed by negative feelings, they sought emotional and physiological support. They looked for someone to listen to their fears and needs. “My girls ensured everything was clean and tidy, meals cooked and everything else, and looked after us very well.” (FGD). Parents expressed that they could rely on their partners, other family members, and employment-colleagues to aid in coping with the situation and for help when needed. A participant in the focus group discussions said that co-workers played a large part as a means of support; “My colleagues were very supportive when I could not go to work, a co-worker would go and support me, and when I have to work, a co -worker would go stay with him when my wife would be also busy.” (FGD).
This study provides insight into the experiences of parents regarding giving care to their children with cancer at home in Rwanda. It offers a description of the significant impacts on parents and the challenges they experience. It is an initial description of giving home care in the African context.
Experience with regard to challenges of parents regarding home care of children after a cancer diagnosis
The experience and coping strategies of parents whose children are diagnosed with cancer during home care giving were characterized with physiological and psychological demands. The increased responsibilities of the parent during home care may lead to perceptions of physical and emotional overload and could hinder the development of mature coping strategies. This finding is consistent with other qualitative studies that reported parents whose children are diagnosed with cancer reported feelings of physical overload and some emotional devastation during home care (19).
Our study showed that parents felt helplessness after noting that the circumstances their child was undergoing were beyond their reach. This is consistent with the report by Leseure (9), which reported that parents felt helpless when they could not keep the patient from suffering, or did not know what to do to keep the child’s life from deteriorating.
Because of the complexity of home care which the children were requiring constantly, the parents initially felt they were not going to be able to deliver everything alone. Yet they constantly felt that they needed to do more. Similar findings were reported by Lewandowska (11) describing moderate and high need for medical information, and desire for psychological and emotional support. This is also consistent with the study by Beatrice et al. (20) which reported that caregivers expressed feelings of not being adequate to support the child living with cancer alone.
Our study revealed parents regretted not knowing what would happen next for them so they would be able to proactively prepare.,. This is similar to work of Mack and colleagues (21) reporting decisional regret among home care givers of children living with cancer; however, they report that parents who receive high quality information, detailed prognostic information, trusted oncologists, and held onto their role in decision-making were less likely to have regret.
This study shows that religion or reliance on spiritual belief was a foundation of psychological and spiritual coping strategies and helped parents maintain positive hope. This is congruent with other qualitative studies that reported caregivers engaged in religious activities, like reading the Bible, fasting, and regular praying, to be focused and remain strong (20).
The results also showed that some parents, after feeling emotionally, physically and financially drained, wanted somebody to listen to their worries, fears and needs. This is in agreement with other qualitative research that reported reliance on friends, family and society for emotional support during home care of children with cancer (22–24).
This study showed that some parents would do whatever possible to recover from a paralytic state caused by the responsibilities of giving home care. They assumed to reestablish the normal of living by making positive changes in their routine lives. This is consistent with findings of other studies that reported being able to adapt and accept ongoing changes were effective coping strategies (25–27).
This was the first study to explore the experiences and coping strategies of parents regarding giving care to their children with cancer at home in an African context. Given the nature of qualitative studies, it offered insight into parents’ experiences and possible gaps in their support. However, further work is needed to see if the findings apply to a larger population.
Our study revealed that parents whose children are diagnosed with cancer feel a never-ending struggle. Regardless of the substantial progress in the treatment of cancer and the hope this brings, childhood cancer is still emotionally, physically, and psychologically draining. The challenges parents in this study experienced enabled them to identify different personal strategies to cope up with the demands of giving care at home. This qualitative study provided a culturally sensitive perspective of parental information found in the Rwandan culture. The experience regarding challenges must be handled in a positive way to enable the parents to be able to cope effectively and deliver home care to their children with cancer. Although parents embraced their home care role, the key coping strategies highlight the increased demand for both physical and emotional support beyond dependence on extended family and friends. The future researchers are recommended to conduct additional qualitative and quantitative research in the field of oncology and its impact on Rwandan parents.
Ethical approval and consent to participate
Ethical clearance was obtained from the University of Rwanda, College of Medicines and Health sciences, Institutional Review of Board (IRB), Ref: CMHS/IRB/121/2019. We obtained also Ethical Clearance from Ethical Committee of University Teaching Hospital of Kigali (CHUK), Ref: EC/CHUK/054/2019. Informed consent was obtained from all the participants before participating in the study. All study procedures were performed in accordance with 1964 Declaration of Helsinki.
Consent for publication
NA
Availability of data and materials
The dataset used in this study are not publically available due to the risks of identifying participants, but can be made available upon reasonable request to the corresponding author.
Funding
This study received no funding.
Authors’ contributions
GM involved in study design, data collection, data analysis, data interpretation, and drafting of the manuscript. BN involved in study design, data collection, data interpretation, and drafting of the manuscript. JN and JCN participated in data analysis, data interpretation, and drafting of manuscript. MIF participated in data interpretation and drafting of manuscript. All authors approved the final version of the manuscript.
Acknowledgements
We are thankful to Tuyishime Gustave Aphrodis for his contribution to the development of research methodology.
Competing interests
The authors declare that they have no competing interests.