Demographic characteristics of study participants
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.
Themes regarding parents’ experience with challenges during home care of children with cancer
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.
Feeling helpless
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).
Knowing that home care was laborious
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).
Feeling overwhelmed
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).
Feeling inadequate
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).
Feeling of uncertainty
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).
Themes regarding Coping strategies of parents during home care for their child
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.
Reliance on spirituality to cope
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).
Balancing my emotion
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).
Getting my mind off the current situation
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).
Keeping life as normal as possible
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
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).
Finding and accepting support from family and friends
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).