Scientific Papers

Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours | BMC Psychology


The result from the thematic analysis is presented under three main categories, namely: strains, coping resources, and coping strategies. Under the category of strains, three main themes emerged: somatic strains (includes poor sleep quality and loss of appetite), economic strains (i.e., financial burden associated cost of child’s treatment and loss of economic livelihood), psychosocial strains (i.e., isolation from social activities and network, frustration and helplessness). The following themes emerged as coping resources: family cohesiveness, community support, and support from health care providers. Coping strategies that emerged included trusting in God and being self-motivated.

Strains

Somatic strains

From the thematic analysis, it was revealed that there were some somatic strains associated with caregiving activities for children who have been diagnosed with and receiving cancer treatment. According to the caregivers who participated in the study, one of the major strains they encountered was a reduction in their sleep quality. Thus, the participants experienced significant dissatisfaction in sleep efficiency, sleep latency, sleep duration, and wake after sleep onset. In their perspective, this poor sleep quality that was experienced could be attributed to the point that they have to intermittently wake up to check how their child is doing. There were times that the fear of losing their child acted as a catalyst for poor sleep quality. The following quotes reflect the experiences of primary caregivers:

“I sleep less because if the child wakes up, I must also wake up to see the problem at hand. I am tired at every point in time, we travel a lot too. Sometimes, if the child is asleep, I have to wake up to check if there is no bleeding and other stuff like checking how hot she is” (F005).

“I barely sleep. Even if I am able to sleep, I would wake up several times. Sometimes, just the fear that I could lose my child to cancer without being awake to see it scares me to wake up. There are also times that the child will be experiencing pains at night, and so I have to wake up to care for him. So, I have not had a good night sleep since my child was diagnosed of this disease” (M002).

Loss of appetite emerged as another somatic strain that family caregivers experienced. The participants asserted that in the execution of their caregiving role, they often did not feel like eating because they could not bring themselves to eating while their child was experiencing excruciating pains. This is evidenced in the quotes below.

“At the moment, on my part, I’m not sick, but everything about me has changed because of the difficulty. I sometimes skip meals to keep going” (F004).

“Sometimes when I even look at the pains that he’s going through, I lose appetite. It is just recently that I tried eating better” (M001).

Economic strains

This theme describes the monetary or financial challenges that were associated with the caring for a child who has been diagnosed of cancer. Mainly, financial burden associated with the cost of the child’s treatment and loss of economic livelihood were the major economic strains experienced by the primary caregiver.

Financial burden associated with the cost of child’s treatment

Results from the analysis indicates that while the national health insurance scheme (NHIS) does cover aspects of the child’s treatment, there were many other associated costs that was not covered by the insurance. The participants contended that some of the medications were not a part of the health insurance benefit package. Additionally, some laboratory tests and scan services had to be paid out-of-pocket by the family caregiver and their family. Hence, exacerbating their health expenditure and rapidly depleting their finances. One of the participants had this to say:

“My main challenge has been the financial aspects, because for every treatment, I have to pay money. I have to buy medicines. I have to take the child for dressing, and I have to pay every single step of the way. Oh, the health insurance covers some of the medications but most of them have been my burden. I have to pay for them” (F007).

Another participant narrated:

“We pay for all the lab tests ourselves. It is one of the main bills. I wonder what the insurance card is for because we pay for everything that is required. From ultrasound scans to x-rays, where we sleep, the bed and lab tests, almost everything. On some days, 5 different samples are taken for lab tests. That is how the 4000 cedis [$442] plus on the bill came about” (M008).

Loss of economic livelihood

The study also revealed that some family caregivers lost their source of economic livelihood as a direct and indirect result of their caregiving activities. In the perspective of the participants, they had to quit their current employments to be able to focus on providing undistracted caregiving to their child who had been diagnosed of cancer: “I got a job as a cook in a new school in the area for two weeks, then this whole issue started to unfold, so I quit. I had to quit the job; I couldn’t go anymore. I had to stop to care for the child” (F007).

Similarly, there were some participants who lost their jobs and source of economic livelihood not because of a voluntary decision but rather due to limited time to carry out their economic activities. This is what one of the participants had to say: “I’m into network marketing. We do a lot of talking to people to get clients for my business. That is how I earn my commission to cater for myself and my child. Yet, because of my child’s condition, I don’t have that luxury of time to roam around looking for clients. So, in effect, my business is collapsing” (M003).

Psychosocial strains

This theme describes how caregiving for children who have been diagnosed of cancer affects the psychology, emotions, and the social lifestyle of family caregivers. The findings revealed that family caregivers were often isolated from social activities. According to the participants, it was impossible to participate in social gatherings such as festivals, church activities, wedding ceremonies, among others. For instance, one participant had this to say: “I actually do not go anywhere that I must leave my child at home. I’m almost always at home. But before her condition, I could leave her at home and attend social events with my friends. But now, I cannot do that; I just have to isolate myself because I will not get anyone to my daughter’s needs when I am not around” (F007).

Another participant also shared that, “Because of my child’s condition, I cannot participate in normal social activities. I must stay with my child 24/7. That means that wedding, festivals, outings and other social gatherings are a no-go-area for me” (M013).

Concerning the emotions of the participants, it was revealed that frustration and feelings of helplessness was common among the family caregivers. The uncertainties about the treatment outcome of the child were a factor that exacerbated frustration among the family caregivers. Similarly, the inability to do anything to alleviate the child’s pains often resulted in feeling of helplessness among the family caregivers. For the participants, it seemed like they had been abandoned and left to deal with their financial, emotional and somatic challenges on their own. This is reflected in this quote: “The stress alone is not easy. I always feel helpless and frustrated. I don’t know what the outcome will be for my child. Besides my wife, there is no other person that I can share this burden with. And so, it is virtually like we are dealing with our own problem by ourselves. It makes me feel totally helpless” (M004).

The study also revealed that family caregivers struggled to balancing the multiple needs of their families. From the analysis, it is indicative that other members and children of the family required equal attention and support from the caregiver. However, because they unable meet these demands because their priority and attention were skewed towards the child who had cancer. Hence, the needs of other children in the family were significantly affected by the caregiving roles of family caregivers. This assertion is typified in this statement from a mother: “To be honest, I don’t know what is happening with the rest of my kids and my husband. When we started coming to the hospital, I was trying my best to balance everything, but it was not working for me because the child had to be hospitalised for days, and that meant I had to be away from the family. As to whether they [other children and husband] are feeling well, I cannot tell.” (M002).

Another family caregiver expressed the view that he had planned to return to school for his higher degree programme and commit some funds towards his building project. However, due to the caregiving role that he assumed, he had to forgo his decision to return to school to be able to effectively deliver their role as a family caregiver. The amount of money that he had to contribute towards the building project had to be reduced to balance the available resources to facilitate the child’s treatment: “[gasps] I don’t know what to say because balancing my personal needs with the needs of my child has not been easy. I had to abandon my plan to start a postgraduate programme this year. I am also building my own house but now, I cannot spend much money on the project because I must be reasonable and cut off some amount to finance my child’s needs” (M010).

Coping resources

The various coping resources available to the family caregivers are described under this theme. The emerging coping resources included family cohesiveness, community support, and support from healthcare providers.

Family cohesiveness

Family cohesiveness was one of the major resources that enabled the family caregivers to cope with the associated strains of caregiving. The study showed that families came together in solidarity to support the family caregiver to offset part of the cost of treatment. Some participants asserted that their relatives sold their belongings of economic value to raise sufficient funds to assist the family caregiver to afford the cost of treatment for the child. For instance, one of the participants indicated that “My sister’s condition actually brought us all together as one family. Although the cost of treatment was high for me, my family came together to assist me. My mother sells yam, my father sells maize and I sell electrical appliances. We all managed to raise enough whenever the need be” (F006).

Not only did family cohesiveness serve as an important resource to cope with the high health expenditure associated with the child’s treatment. Family cohesiveness also served as a resource that allowed the family caregiver to have someone whom they could rely on for extrinsic motivations in the form of encouragements and goodwill messages. This assertion is evidence in this quote: “In a way though we are trying to console each other but sometimes men usually don’t like demands. It is not like I am dealing with everything by myself now. I can actually rely on my husband and my extended family for encouragement to persevere and do the best for my chid even amidst these circumstances. It has really been instrumental in keeping my hopes alive and morale high for my child” (M006).

Community support

The participants noted that they received support from different sections of the community to help them cope with the strains associated with caregiving for their children who have been diagnosed of cancer. These supports from the community mainly came from significant agencies and agents such as the religious entities and non-governmental organisations (NGO). Religious entities such as the church provided spiritual and psychological support by praying for the caregivers and their families, as well as using scripture to encourage them to not give up on their caregiving activities for the child. This is exemplified in this quote: “My church pastor’s support is mostly about praying with me, consoling me and telling me never to lose hope. Essentially, my church has been an instrumental agent in helping me to cope” (F005).

NGOs served as an essential resource for the caregiver through their donations that helped them to cope with the economic strains. Some NGOs provided funds that contributed to reducing the amount of money that the family caregivers would ordinarily have to pay in full: “Sometimes, we are lucky. Some of the NGOs come around and donate some amount which helps me to manage the high cost of healthcare for my child by cutting down our bills” (M009).

Support from healthcare providers

Another resource that facilitated the coping behaviours of family caregivers was the support that they received from the healthcare providers. Healthcare providers treated family caregivers with respect and dignity. This behaviour from the healthcare providers made the family caregivers to feel comfortable to share their challenges with them. According to the participants, this friendly behaviour of the healthcare providers was relevant in helping family caregivers to maintain a health state of mind: “The doctors and nurses are very caring and friendly and make us feel at home. Because of that, I was able to share my deepest fears and concerns with them, and that helped me to calm down and deal with my anxieties. They [the healthcare providers] don’t know this; but their kind words and friendliness are a powerful tool that allows parents like me to get through the challenge” (F003).

Results from the analysis also showed that some healthcare providers provided family caregivers with money to help them manage the high cost associated with travelling to the health facility for treatment, as well as to reduce the amount of money that they would have paid for laboratory tests. A participant shared this sentiment: “The nurses have been very supportive in helping me to cope with my financial costs associated with my child’s healthcare. When they [health providers] have money on themselves and you are due to do some laboratory tests and chemotherapy, they sometimes pay for me. They sometimes buy some of the medicines for me and even pay my lorry fare” (F005).

Coping strategies

Family caregivers of children who have been diagnosed of cancer adopt certain strategies and behaviours to cope with the various strains that they experience. This theme describes the specific coping strategies adopted by family caregivers. The emerging coping strategies included trusting in God and being self-motivated.

Trusting in God

Trusting or believing in the providence of God was one of the common coping strategies adopted by all the family caregivers who participated in the study. Ghana is a nation dominated by Christians; the participants in this study mainly belonged to Christianity. Hence, the family caregivers relied on stories and characters from the bible who had faced certain traumatic experiences to encourage themselves. These stories restored their shattered hopes, and provided some level of assurance that just as it was with the biblical characters, their moment of relief would eventually come. This assertion is shown the quotes below:

“I hold on to my faith and use some scriptures in the Bible and Bible characters like Job and Joseph to encourage myself and made me believe more that it’s just a test of faith. My latter end will be glorious. Looking at how God helped the other child’s condition to be better, I’ve just put my trust in Him and know that I will be able to go through this phase in my life” (F003).

“Temptations will meet us on the way as Christians. You just have to have the faith to overcome such circumstances. There will always be issues with your kids, you should be able to adjust to suite the current situation. I just liken my child’s condition to the suffering of Job in the bible. That trust I have in my God is what has kept me going” (F005).

Being self-motivated

Some of the participants noted that the strains that they experienced during their caregiving propelled them to adopt active coping strategies like being self-motivated. In the view of the participants, there was no one to provide support to them. Therefore, it was necessary for them to develop an intrinsic motivation to persevere through their challenges. The following quotes reflect this theme:

“I have developed the habit of encouraging myself in this life because nobody cares enough to help. Every day, I tell myself that one day this will pass away” (F004).

“I just encourage myself to move on. There is nothing serious that can do to change my situation. And so, I try to gather strength to go through the psychological trauma and economic challenges” (M004).



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