Children with cancer and their families experience many difficulties because of the seriousness of the disease, the need for special care, and the life-threatening situation.1 Children diagnosed with cancer are admitted to the oncology clinic and receive treatment. Between treatments, children who have not developed any complications, do not have neutropenia, and are deemed suitable by the health team are sent home until the start of the next treatment course. Home care services in Turkey have only recently started to be developed and primarily cover geriatric patients.2 Children with cancer and their families spend this period alone in their homes and can remain on their own with concerns and problems. The objective of this study was to describe the difficulties, problems, and experiences of families caring at home for children who were at home between treatments.
Orem3 considers self-care as the practice of activities that individuals initiate and perform on their own behalf in maintaining life, health, and well-being. Orem’s Self-care Deficit Theory has 3 concepts: self-care, self-care agency, and basic conditioning factors. The theory explains the relationship between individuals’ ability to accomplish their self-care and their needs for self-care.3,4 The theory as explained by Baker and Denyes4 is shown in the Figure.
All self-care actions that need to be carried out by individuals in protecting themselves from illness and in preserving their health are defined by Orem as therapeutic self-care needs. These therapeutic self-care needs are divided into 3: universal self-care needs, developmental self-care needs, and health-deviation self-care needs. Universal self-care needs are air, water, food, elimination, activity and rest, solitude and social interaction, hazard prevention, and promotion of normality. Developmental self-care needs are needs that arise at various stages in the life cycle, such as adolescence, pregnancy, or old age. Health-deviation self-care needs are needs that arise in relation to illness and that are not met by universal and developmental self-care because of illness.3 There are differences that arise in the universal self-care needs of children receiving cancer treatment, such as a decrease in the ingestion of nutrients, loss of appetite, nausea and vomiting created by chemotherapeutic medicines or infections, malnutrition in an advanced period, and the development of mucositis.1,4–6 Besides nutrition, differences are also observed in other universal self-care needs, such as elimination, sleep, and activity.1,5,7
According to Orem, the person providing the self-care is the self-care agent. The person who provides self-care for someone who cannot provide it for himself/herself is known as the dependent care agent (Figure).3,4 The self-care of children who receive cancer treatment is met completely or partially by their families, both because of the fact that they are children and because of the effects of the cancer treatment. In Turkish culture, mothers have the primary responsibility in families for the care at home of children who are receiving cancer treatment.5,8 The parents of children receiving cancer treatment assume the role of nurse in the care process and usually make decisions and take responsibility in difficult areas such as giving drugs and managing emergency situations.9 Mothers also assume roles such as administering the drug treatment and catheter care for their ill child, caring for them physically, reducing pain, noticing changes in behavior, and acting as a playmate or teacher for the child.10 In a study by Caliskan et al,5 mothers of children with cancer had a great need for information on the home care management of infection, nutrition, intestinal symptoms, sleep, tiredness, and pain. It is necessary for mothers to develop their knowledge and skills relating to cancer care and to learn to cope with emergency situations.11
According to Orem’s theory,3 it is necessary to have adequate self-care agents for individuals to be able to meet their self-care needs. Self-care is influenced by self-care agents in healthy or ill children and adolescents.4 The duration of the disease is 1 of the most important components that will influence the self-care agents of children with cancer and their families. Because of the fact that the disease is life-threatening, psychosocial problems are frequently observed in the child and the family.12,13 Li et al14 determined that as the severity of the symptoms connected to cancer treatment in children increases, depression increases and their quality of life decreases. In addition, Elcigil and Conk8 reported that families generally experienced difficulty in coping with the adverse effects of the treatment, with the physical and emotional health of families being negatively affected. Mothers reported feeling they had lost control over their lives.15 Indicators of coping, such as the behavior of the child in cancer treatment and the time since diagnosis, the cohesion of the family, social support, and stress management, affect the psychosocial health of the family.16
Basic conditioning factors consist of an individual’s age, sex, state of health, stage of development, sociocultural characteristics, healthcare system, family system, lifestyle, environmental conditions, resources, and sufficiency.3,4 These factors affect an individual’s self-care needs and self-care strength. That cancer treatment is time-consuming, that some cancers are never completely cured, and that treatment can involve long and repeated stays in the hospital cause emotional, social, and economic problems for the child and his/her family. The treatment period entails a restriction in social life and daily activities, strains on family and marriage relationships, and work changes or loss of work, along with economic difficulties and such basic situational factors as not having enough time for the other family members.17–19
Only limited studies exist on the home care needs of children with cancer and the difficulties, problems, and experiences of parents, and the existing studies are focused on quantitative5,20 examinations of the emotional burden,21 family care burden,8 and the diagnostic stage.21 The objective of this study was to describe the experiences of parents in the home care of children who had been recently diagnosed with cancer and had been discharged from the hospital between treatments.
Material and Methods
Approval for the study was received from the Ege University Non-interventional Research Ethics Committee (no. 12-1/17), and written and verbal consent was obtained from the parents.
The study was carried out at the Pediatric Oncology Department Inpatient Clinic of the Tülay Aktaş Bone Marrow Transplantation and Oncology Hospital of Ege University Faculty of Medicine.
The sample was 12 parents (11 mothers and 1 father) of 12 children between 0 and 18 years of age who had recently been diagnosed with cancer and who had been discharged from the hospital to go home after receiving their first chemotherapy treatment and were continuing their care at home until the next chemotherapy regimen. The parents of children with cancer who relapsed during treatment or of patients at the end of life were not eligible for this study.
This is a qualitative descriptive study, relying primarily on in-depth interview methods. This design provides an opportunity to examine topics that are complex, sensitive, and not much studied previously.22
The structured interview questions were based on the studies of Caliskan Yilmaz and Ozsoy5 and Elcigil and Conk8 involving Turkish mothers of children with cancer. Before fully implementing the study, the planned interview questions for the structured interview guide, the expert opinions of 1 pediatric oncologist, 3 academician nurses, and 3 clinician nurses were obtained. Subsequently, pilot interviews were conducted with 3 parents, and the final form of the interview was prepared. Two researchers completed the interviews between March and July 2012. One of the researchers carried out the interviews, and the other was the observer. A quiet and calm room at the inpatient clinic was selected for the interviews. The in-depth interviews lasted between 45 and 60 minutes. The parents were asked open-ended questions related to the sociodemographic characteristics (age, diagnosis, number of children in the family, etc) of the child and parents, characteristics related to the diagnosis and treatment (disease and duration, presence of catheter, loss of function, nutritional status, drugs used at home, etc) of the child, and physical care experiences (management of drugs, emergency situations, nutrition, hygienic practices, oral and skin care, symptom management, catheter care, etc). All of the interviews were recorded with a sound recorder after obtaining permission from the parents.
Analysis of the Data
Immediately after the interviews, the recordings were transcribed verbatim and deidentified such that no names were used. A total of 72 pages of data were obtained from the 12 interviews. After all of the interviews were finished, the analyses were completed between August and December 2012 without using a computer program. The data were analyzed using inductive content analysis. First, the researchers completed the open coding of the data independently. Next, the coding of the researchers was compared. After the coding, the themes and main themes were constituted. The inductive content analysis was done in the manner described by Elo and Kyngas.23
The characteristics of the participating parents and their children in treatment are given in Table 1. The children were between 1 and 17 years of age. They had received a diagnosis, on average, 2 months previously, had been discharged from the hospital once, and had returned home.
The analysis of the data was conducted according to Orem’s Self-care Deficit Theory. The findings at the conclusion of the qualitative analysis of the data obtained in the interviews were explained under 3 main themes: basic conditioning factors, self-care agents, and self-care needs (Table 2).
Basic Conditioning Factors
MOVING FOR THERAPY
Three of the parents lived in areas that were distant from the hospital where the ill child received treatment and made changes in living arrangements, such as living with relatives.
I was working in Diyarbakır. Since I work as an administrator, it was difficult for me to go back and forth. We have relatives in Izmir. I thought that they could help us when we were at the hospital, so I requested reassignment to Izmir (code no. 11, Table 1).
We came to Izmir for treatment and arranged a house here. We all moved here together with my mother-in-law, father-in-law, and my other child (code no. 12, Table 1).
We came to Izmir for treatment. My sibling’s house is here. They live near the hospital. We are staying at my sibling’s house until the treatment is finished (code no. 3, Table 1).
SUPPORT FROM RELATIVES
The parents stated that they received support (meal preparation, cleaning, drug treatment, care of other children, transport, emotional support) when carrying out the physical care.
The uncle is a doctor and gives antibiotic treatment at home; the paternal grandmother makes food and helps with everything (code no. 4, Table 1).
My mother-in-law and father-in-law came to Izmir for us. In any case, it is not a task that can be done alone. My father-in-law takes us back and forth in his car and takes care of my small son. My mother-in-law prepares the meals and I do the cleaning (code no. 12, Table 1).
Mothers were the individuals primarily responsible for the children’s self-care.
RESOURCES FOR CAREGIVING KNOWLEDGE
Some parents stated that, sometimes, they did not understand the information that the physicians and nurses gave them before discharge from the hospital. When they were at the hospital, they used the other patients and their families as sources of knowledge. The parents stated that they hesitated to ask questions to the physicians and nurses in the period when they were at the hospital.
We asked the doctor or the nurse when we needed to. Of course, there were also patients who had been there for a longer time. Their mothers and fathers would share information with us (code no. 11, Table 1).
For instance, if they were to give us something like a CD, or if there was something related to what we should do, it would be better. We take notes when they talk, but we get confused. We get confused about whether this was the answer to the questions we asked (code no. 10, Table 1).
The parents stated that they did not have sufficient information and consequently they felt ill at ease outside the hospital environment.
There are doctors and nurses 24 hours a day, 7 days a week at the hospital. I feel very much at ease at the hospital. But when I go home, I do not feel this much at ease. When I am at the hospital, when I think that I do not know something or that I’ve done something wrong, I can ask immediately. But it is not the same at home (code no. 1, Table 1).
FOCUSING ON THE RECOVERY OF THE CHILD/BEING MOTIVATED FOR CARE
All of the mothers stated that they focused on the care of their children and that they were “only mothers” throughout the treatment of their children. They stated that they made efforts to do the best for their children in the hope that they would recover.
Yes, I am only a mother until my daughter recovers. This is what my child needs at the moment (code no. 8, Table 1).
From now on, rather than acting in a confused manner, what is the most correct and best for my child? What can I do? How can I make my child feel at ease? I am trying to find solutions to these things; we have no other chance (code no. 2, Table 1).
FEAR/GROUNDLESS APPREHENSION AND ANXIETY
The parents stated that they experienced various fears, apprehensions, and anxieties about protecting their ill child from various dangers. The parents expressed fears about cooking vegetables, cleaning, physical contact with others, and about their child getting fevers.
I stroke my daughter’s hair and kiss her. Sometimes I hug her and we go to sleep. I am anxious that I will infect her with germs (code no. 1, Table 1).
My greatest fear is infection. The moment I feel weak or not well, I immediately put a mask on. I may feel well, but perhaps I am carrying a virus. I could infect my child with germs. That is my greatest fear (code no. 5, Table 1).
Now should I give or not give toys? It is impossible not to, but when I do, I am anxious that my child will catch an infection (code no. 2, Table 1).
Some of the parents stated that they were filled with groundless apprehensions when caring for their children, watching their children continuously and looking for symptoms in their children.
I try to be aware of everything. I look at my child’s body, hands and arms; 1 arm is still a problem (code no. 2, Table 1).
INADEQUATE PERCEPTION AND CONCENTRATION
Only 1 mother stated that she experienced tiredness and lack of sleep and that this situation led to difficulty of perception and concentration.
My thinking is normally good, but it is very bad at this time. I forget everything, because we are tired and short of sleep (code no. 10, Table 1).
PARTICIPATION OF THE CHILDREN IN THEIR OWN CARE
Some of the parents stated that their children had information about their own care, that they were knowledgeable about what they should eat and drink, and that they made their preferences according to this.
My child knows what things are forbidden and definitely does not eat them. My child is very responsive and shows self-control on this subject (code no. 4, Table 1).
My child takes very good care of himself. It is not necessary to say anything. When he wakes up, he has a good breakfast with grape molasses, eggs, and honey (code no. 7, Table 1).
Some parents stated that their children behaved reluctantly on the subject of washing their hands and hygienic practices:
My child bathes even though she does not like it much and when she does not bathe, then she uses that solution (code no. 6, Table 1).
He should wash his hands, brush his teeth, and gargle. He does not want to do these things. We do not have a very serious problem other than that (code no. 11, Table 1).
Self-care (Health-Deviation Self-care Needs)
RELUCTANCE TO EAT
The parents stated that most of the time, they experienced difficulties related to nutrition for their child at home as the children refused to eat the food prepared because of nausea, vomiting, and lack of appetite or they ate little. The parents said that many of the foods the children liked are forbidden, and consequently, the children are unhappy and reluctant to eat.
Probably he is reluctant in the fever period. Probably the lack of appetite is due to the drugs (code no. 2, Table 1).
We experienced many problems on the subject of eating and drinking, especially in the beginning. It is good at the moment (code no. 11, Table 1).
The parents stated that they made decisions according to the situation for the nutrition of their children.
Sometimes, frankly, we do small things that are forbidden (code no. 5, Table 1).
He wants to eat potato chips and nuts. Naturally, sometimes, when he wants them, we give them, but not very often. He should not eat them. He wants to eat spiced sausage like pepperoni. We give it to him occasionally (code no. 11, Table 1).
Some parents stated that they preferred natural organic products produced in the villages for feeding their children.
We bring milk, make yogurt, boil fresh eggs, and prepare food fresh every day. My mother made mulberry syrup, she made it herself from black mulberries. I have my child drink it in the morning on an empty stomach (code no. 12, Table 1).
Some parents stated that they were arranging the feeding of their children according to the child’s blood values to keep them healthy.
In periods when my child’s potassium was low, I fed her bananas and boiled potatoes and we boiled apricots at home in a little water (code no. 8, Table 1).
When her blood values improved, I gave foods like pitta bread, pizza made with pitta, meat and tomatoes, etc, from outside the home. Why should I lie, because she is a child (code no. 6, Table 1).
The parents stated that they were overzealous about hand washing and housecleaning with the worry that their children would catch germs. Washing hands drew the most attention. The parents described how everyone living with them and their children washed their hands very frequently.
I got open sores on my hands from washing them. Whatever I touch, I always go immediately and wash my hands (code no. 1, Table 1).
I wash my face and hands continuously with disinfectant. You can see the redness on my face. This is completely from my excessive washing (code no. 8, Table 1).
The parents also stated that they continuously cleaned their homes with a disinfectant solution and that they cleaned even the finest details, such as door handles, baseboards, and window sills.
I was clean in any case, now I have really become a cleaning addict (code no. 12, Table 1).
I aired and cleaned every part of my house and got rid of as much furniture as possible. I did this, but I do not know whether it was the right thing to do. I did not do this because someone told me to do it, I did it on the basis of my own logic of disinfecting (code no. 8, Table 1).
All of the parents stated that they limited visitors to their homes. In general, they did not accept visitors other than family members, and when visitors came, they did not allow their child to leave his/her room or the child had to put on a mask and not come into close contact with the people who came.
When we returned from the first treatment, we did not let anyone near him, including siblings, with the first shock (code no. 11, Table 1).
Some parents stated that they made a decision about isolation according to the blood values and general condition of their children. But at the same time, there were parents who stated that they experienced indecision on the subject of isolation.
When the (blood) values are good, we do not wear masks. Especially, we do not wear masks outside (code no. 12, Table 1).
After receiving the first drugs and leaving (the hospital), the blood values were high. They started to fall a week later. I was following the blood values, and if they were high, then I would put a mask (on my child) when I took him shopping. I was doing this according to my own way of thinking (code no. 6, Table 1).
FEAR OF MUCOSITIS
Whereas some of the parents stated that they provided regular oral care for their children, some stated that they did not; some stated that their children resisted oral care. They stated that in periods when the thrombocytes were very low, they did not let their children brush their teeth, and when the thrombocytes were somewhat low, they had their children brush their teeth not by rubbing but by dabbing (code no. 1, Table 1). The parents stated that they did not have their children brush their teeth in periods such as when there was a fever or infection (code no. 1, Table 1).
We are somewhat constrained. Sometimes he could neglect it. But we say, brush your teeth, use your gargle (code no. 11, Table 1).
We have had much difficulty on the subject of taking glutamine. The child did not want to take it due to the taste and when he took it, he immediately vomited (code no. 5, Table 1).
DIFFERENT PRACTICES IN SKIN CARE
The parents mentioned very different practices for the skin care of their children.
I look and when his bottom becomes sensitive, I clean it immediately with Batticon (Povidone iodine) and rub it with Furacin (code no. 6, Table 1).
I wetted a paper towel with boiling water and cleaned her bottom. I did not rub any detergent or tissue with cologne on my child (code no. 8, Table 1).
MANAGEMENT OF EMERGENCY SITUATIONS
The parents expressed that the only urgent situation at home that they could encounter for the health status of their ill child was fever.
I know that it is only necessary for me to apply here (hospital) when his fever is above 38°C. Is there another emergency subject or situation? I have no information on that subject. I do not know what I could be confronted with (code no. 10, Table 1).
MANAGEMENT OF GASTROINTESTINAL SYMPTOMS
The parents stated that they were attempting to feed their children by their own efforts when there was nausea or vomiting.
I do not know very much when there is diarrhea, but I give solid things, such as bananas, boiled potatoes, and things without fat (code no. 6, Table 1).
He vomited, I gave Zofran. Later, I gave him soup, but 2 hours later, he vomited again. This time I waited; I made pasta and gave him ayran (a drink of yogurt, water, and salt). Later, he did not vomit at that time. But there is nothing that you can do; he vomits anyway. When he is taking Endoxan, if he has soup, he vomits. We gave, he vomited, we gave, he vomited” (code no. 12, Table 1).
Throughout the world, parents of children with cancer are affected by the treatment period. This qualitative study addresses the therapeutic care needs at home of patients who receive treatment at 1 of the largest pediatric oncology centers in Turkey. In the current study, the findings obtained in the interviews are discussed according to the factors of self-care, self-care agents, and basic conditioning in Orem’s theory.
One basic conditioning factor for some of the parents was relocating closer to the treatment center because of treatment needs. In general, the city where the study was made is above the Turkish average with regard to demography, education, and health indicators.24 Consequently, people might move there to obtain health services. Another basic conditioning factor was receiving assistance/social support, which can decrease the damaging effects of negative life events on individuals.25 As a result of Turkish family structure, close family members, such as grandmothers, grandfathers, uncles, and aunts, come together in situations of disease and provide support. On the basis of this knowledge, the parents received all types of social support (instrumental, emotional, respect, informational support, and social friendships) from their families and surroundings, and it can be said that this support facilitated their coping with the difficulties in the care of their children. The positive effect of extensive family support is a noteworthy aspect of this study. In contrast, in a study by Ozdemir et al,17 the mothers living in an extensive family reported a greater burden of care.
In other studies,10,15 parents reported responsibilities such as monitoring the adverse effects in their children, carrying out drug management, and establishing communications with the healthcare system workers. In this study, the mothers were the responsible person for all of the self-care needs of their children, and as the dependent care agent, the mothers assumed the role of nurses in the care at home. Besides the fears and anxieties of the parents in their struggle to keep their children alive, their knowledge and skills and their hopes also affected their care strength.
Parents used different sources of information to meet the health-deviation self-care needs of their child. Some described being given training at the hospital but sometimes not understanding the information from physicians and nurses, and some did not remember what was said to them. Parents may experience difficulty in absorbing information secondary to their anxieties, which can result in difficulties concentrating on topics other than the situation or object that creates the threat.26 That cancer treatment is a long period that can include long and repeated stays at the hospital is a cause of various emotions in parents.5,8 Parents experience concern, fear, and anxiety and fear making a mistake during the home care of their children. Parents described feeling secure in the hospital environment and not wanting to be discharged from the hospital because they lacked sufficient knowledge about handling emergencies at home. In other studies,20,27 mothers reported that the management of fever was what they feared the most. In a study by Clarke et al,10 mothers stated that they were continuously acting like guards in case their children had fevers. The needs that emerge with cancer and the period of treatment are defined as the universal and developmental self-care needs that are not met because of the disease and as the health-deviation self-care needs.3 In our study, the parents stated that most of the time, they experienced difficulty in feeding their ill child at home because of the child’s nausea and vomiting, changes in taste, lack of appetite, or mucositis. In other studies,17,28 mothers of children with cancer similarly reported experiencing difficulty in feeding their ill child.
The parents in our study isolated their child to prevent life-threatening infections and worried about the environment they would put their children in and who they would receive for visits to their homes. This concern for infection can contribute to social isolation of the child and affect his/her emotional state. Concern lies at the foundation of the fear and anxiety, which is defined as concern felt in response to a threat.29
Along with fear and anxieties experienced by parents for the care of their children, there are also groundless apprehensions. Because of the fear of their ill child dying, parents can show excessive behaviors. Just as parents reported that they experienced indecision on the subject of isolation, there were parents who stated that they isolated their child from infection, but this isolation made their child unhappy. These routines of daily life in the care of a child with cancer are significant life experiences, which have a negative effect on self-care strength. Similar practices and anxieties were also reported in a study of the families of children with cancer in Hong Kong.29 In a study by Caliskan and Ozsoy,5 mothers of children with cancer described a high need for information on the management of infection in the care of their ill children at home. In 2 studies, mothers of children with cancer reported difficulty in getting oral care done.17,20 Some of these anxieties, groundless apprehensions, and fears can be related to the parents having insufficient knowledge.
According to our findings, some of the children participated actively in their own care, but others were unwilling to do so. The reaction of children and adolescents to illness is very varied. Adolescents and school-age children can typically understand the information given to them concerning their illness. School-age children can be more cooperative in the process of treatment and care. For adolescents, the illness itself is the basic problem. The illness is perceived as causing a loss of independence and spoiling their plans for the future. Many factors, such as the child’s temperament and previous experiences and the effects of the illness on the family, can affect children’s reactions.30 For this reason, it is important that nurses providing care should recognize the individual variation of reactions that children may show and develop an individual approach for each child.
Implications for Nursing
A well-planned discharge education, home visits, and telephone consultation interventions are essential to meet the needs of children and their families, to help them cope with problems they will face at home, and to minimize the problems they will experience. Providing training from the time of diagnosis to families and children about when and how often oral care should be performed, how the teeth should be brushed, and how skin care should be carried out; answering their questions; and doing this along with the family are key approaches. In addition, identifying correct and wrong practices by observing the families when carrying out care and providing individualized information would reduce such practices to a minimum. Correct isolation practices by the family can be achieved by providing detailed information on what neutropenia is, in what situations the child needs to be isolated, and when visitors can be allowed. Giving detailed information in the hospital discharge training on emergencies that could be encountered at home and what has to be done could set the families at ease. In addition, setting up a telephone information system would make the families feel more secure at home. It would be of benefit to hand out a booklet on safe food preparation at home, written in easy-to-understand words, at the time of discharge. If nurses read international guides on safe food preparation and consumption and gave information to the families, this would help to reduce the dilemmas that they face. Nurses need to look for interventions targeting symptoms in children with cancer and teach children and families about these symptoms. It is important that all pediatric oncology centers prepare a standard written care guide for families on home care and share it with their colleagues and that they should send out a common message. Along with this, studies could be conducted in the future to examine the effect on symptom management of education given to parents on the information and skills needed for symptom management at home and to explore the effectiveness of an intervention, such as telephone monitoring or a support group for parents or a new strategy for discharge teaching. The emphasis of the present study has been on physical care needs. Future qualitative studies can contribute to describing the psychological and social needs experienced by parents and children in care at home and to planning integrated approaches.
Orem’s Self-care Deficit Theory of nursing provides a framework for holistic nursing. In this study, mothers were completely motivated to the care of their ill child and stated that positive social support is important as an important basic conditioning factor. Although most of the parents had a high level of education and a commensurate job, they had some difficulties in maintaining the daily routines of their life (cooking; cleaning the house; physical contact with their children—kissing, hugging; visits by relatives) for fear of infection and especially in feeding and meeting the health-deviation self-care needs. Parents need permanent sources of information (CDs or brochures). They feel more confident in the hospital than at home. The results of this study could be an important source of information in planning and delivering care in hospital-based home care services. Hospital-based home care support enhanced the quality of life of both children and their parents during cancer treatment.