Open access Original research

Stress and coping strategies among parents

BMJ Open: first published as 10.1136/bmjopen-2022-065090 on 6 January 2023. Downloaded from http://bmjopen.bmj.com/ on March 20, 2024 by guest. Protected by copyright.
of children with cancer at Tikur Anbessa
Specialized Hospital paediatric oncology
unit, Ethiopia: a phenomenological study
Leul Deribe ‍ ‍,1 Adamu Addissie,2 Eshetu Girma,2 Aynalem Abraha,3
Haileyesus Adam,4 Nataliya Berbyuk Lindström ‍ ‍5

To cite: Deribe L, Addissie A, ABSTRACT

Girma E, et al. Stress and Objective This study explores sources of stress, STRENGTHS AND LIMITATIONS OF THIS STUDY
coping strategies among parents conditions that help reduce stress levels and coping ⇒ The qualitative interview data offered contextualised
of children with cancer at Tikur and detailed insights into parental stress, conditions
strategies among parents of children with cancer receiving
Anbessa Specialized Hospital influencing it and coping strategies.
chemotherapy at Tikur Anbessa Specialized Hospital
paediatric oncology unit,
(TASH) in Ethiopia. ⇒ Data collection was performed at the paediatric on-
Ethiopia: a phenomenological
study. BMJ Open Design A qualitative phenomenological approach was cology unit of Tikur Anbessa Specialized Hospital in
2023;13:e065090. doi:10.1136/ used. Addis Ababa, Ethiopia, which is the country’s prima-
bmjopen-2022-065090 Setting Parents of children receiving chemotherapy at the ry oncological care unit.
TASH paediatric oncology unit. ⇒ Because participants were selected purposively, the
► Prepublication history for
Participants Fifteen semistructured in-­depth interviews characteristics of the sample may limit the transfer-
this paper is available online.
were conducted with nine mothers and six fathers of ability of the findings to other populations.
To view these files, please visit
the journal online (http://dx.doi.​ children with cancer from November 2020 to January
org/10.1136/bmjopen-2022-​ 2021.
065090). Results Sources of stress related to child’s health
condition as the severity of the child’s illness, fear of INTRODUCTION
Received 28 May 2022 treatment side effects and loss of body parts were Every day, 700 children are diagnosed
Accepted 09 December 2022 identified. Parents mentioned experiencing stress arising with cancer worldwide,1 and the estimated
from limited access to health facilities, long waiting number of childhood cancer cases in 2015 was
times, prolonged hospital stays, lack of chemotherapy 397 000. Globally, 43% of childhood cancer
drugs, and limited or inadequate information about their cases are undiagnosed, with the highest prev-
child’s disease condition and treatment. Other sources alence of undiagnosed cases in African coun-
of stress were insufficient social support, stigmatisation tries.2 Despite dramatically improved survival
of cancer and financial problems. Conditions decreasing
rates (80%) in high-­income countries, cancer
parents’ stress included positive changes in the child’s
health, receiving cancer treatment and access to drugs.
remains the leading cause of death among
Receiving counselling from healthcare providers, getting children younger than 19 years old.1 When
social support and knowing someone who had a positive compared with the published data for devel-
treatment outcome also helped reduce stress. Coping oped countries, the available data on child-
strategies used by parents were religious practices hood cancer survival in developing countries
including prayer, crying, accepting the child’s condition, are incomplete and limited but indicate that
denial and communication with health providers. survival rates are on the order of 10%–30%
Conclusion The main causes of stress identified by and are thus much lower than in developed
parents of children with cancer in Ethiopia were the countries.2–5 Accordingly, the childhood
severity of their child’s illness, expectations of poor cancer survival rate in Ethiopia is believed to
© Author(s) (or their
treatment outcomes, unavailability of cancer treatment
employer(s)) 2023. Re-­use be below 20%6 and shortages of chemothera-
permitted under CC BY-­NC. No services and lack of social/financial support. Measures
that should be considered to reduce parents’ stress
peutic agents, treatment facilities and skilled
commercial re-­use. See rights
and permissions. Published by include providing psycho-­oncological care for parents health professionals are common challenges
BMJ. and improving the counselling available to parents in paediatric oncology.6 7
For numbered affiliations see concerning the nature of the child’s illness, its treatment, Both parents and children are affected
end of article. diagnostic procedures and treatment side effects. It may by the psychological stress associated with
also be helpful to establish and strengthen family support childhood cancer.8 As noted by Lazarus and
Correspondence to
groups and parent-­to-­parent communication, improve Folkman, stress is a specific relationship
Dr Nataliya Berbyuk Lindström;
​nataliya.​berbyuk.l​ indstrom@​
the availability of chemotherapy drugs and offer more between a person and their environment that
ait.g​ u.​se education on coping strategies. the person considers beyond their capacity

Deribe L, et al. BMJ Open 2023;13:e065090. doi:10.1136/bmjopen-2022-065090 1

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and harmful to their well-­being. Stress perception varies for paediatric oncology patients. Therefore, many parents
from person to person; what is stressful to one person may are required to travel long distances from every corner of
not be stressful at all to another.9 Similarly, the American the country and stay in Addis Ababa for extended periods
Psychiatric Association defined stress as a sense of being to get treatment for their children. Since this study is the
overwhelmed that may be linked to worry, depression, first of its kind, an explorative qualitative approach was
exhaustion and lethargy.10 Stress affects people of every adopted to identify causes of parental stress with direct
age, sex, race and situation, resulting in both physical and implications for clinical practice and the development of
psychological health problems.11 effective interventions. The aims of this work were thus
Parenting stress is an aversive psychological response to identify sources of stress, conditions that help reduce
to the strains of being a parent that occurs when parents stress levels and coping strategies for managing stress
cannot meet the demand of parenthood such as having among parents of children with cancer in Ethiopia. To
adequate information, the ability to provide care and the guide the work towards this objective, three research
level of competency of doing so.12 Stress is commonly expe- questions were formulated:
rienced by parents of children with serious illnesses such Research question 1: What are the sources of stress
as cancer. Accordingly, a comparative study conducted by among parents of children with cancer in Ethiopia?
Pollock et al found parents of children with cancer exhib- Research question 2: What conditions helped reduce
ited more severe physiological symptoms of stress than the stress levels of parents of children with cancer?
parents of healthy children.13 Several studies have also Research question 3: What coping strategies do parents
found that parents of children with cancer experienced use to manage the stress associated with childhood
significant levels of stress related to their children’s condi- cancer?
tion.14–17 Both fathers and mothers may develop parental
stress, although there is evidence of higher levels of stress
among mothers than fathers.17–20 Moreover, parents of METHODS
children who survived cancer report feelings of stress for Study setting and approach
extended periods after their child’s recovery.16 20 We conducted a qualitative phenomenological study
Several studies have investigated sources of stress among parents of children being treated for cancer at the
among parents of children with cancer. Parental stress paediatric oncology unit of TASH in Addis Ababa, Ethi-
has been linked to the duration of the child’s disease opia. Ethiopia is Africa’s second most populous country,
following diagnosis,14 16 17 21 the severity of the family’s with a population of more than 100 million people.29
financial problems,14 fear of death, the impact of the According to data from the hospital’s administration,
disease on the child’s life,21 the child’s age at the time TASH is the country’s largest tertiary university teaching
of diagnosis,21 22 and the diagnostic and treatment proce- hospital, with a capacity of over 800 beds. The paediatric
dures used in cancer therapy.13 Previous studies have oncology ward has 26 beds and is staffed with haemato-­
also shown that parents use different strategies to cope oncologists, haematopathologists, residents and nurses.
with their child’s cancer and that the choice of strategy Data from the unit’s registry indicate that it provides inpa-
affects the family’s adaptation to the child’s condition.23 tient and outpatient services for around 500–600 children
Two types of coping strategy have been distinguished: with cancer annually.
problem focused and emotion focused. Problem-­focused To explore the ‘lived experience’ of parents of children
coping involves resolving or taking action to change the with cancer being treated in the paediatric oncology unit,
source of stress, whereas emotion-­focused coping focuses we conducted an exploratory qualitative study using a
on reducing or managing emotional stress.24 Sutan et phenomenological approach.30 Lived experience refers
al reported that parents used problem-­focused coping to a representation of the experiences and choices of a
strategies more than emotion-­focused ones to handle a given person and the knowledge they gain from these
child’s cancer diagnosis.25 Another study on parents of experiences and choices.30 Semistructured in-­depth inter-
children with cancer described emotion-­focused coping views were conducted in which parents were encouraged
strategies such as praying, adhering to religious obliga- to direct and shape the discussion in accordance with
tions, getting support from family members and meeting their own experiences, views and particular concerns.
other parents of children with cancer.25 Known problem-­
focused coping techniques include seeking information, Participant selection
consulting medical experts and seeing psychiatrists.26 The Following the recommendations of Grossoehme and
types of coping strategies used by parents also depend on Moser and Korstjens,30 31 we purposely selected 15 parents
the phase of the child’s cancer.22 27 of children with cancer visiting the paediatric oncology
Research on parental stress and coping strategies in centre at TASH. In addition to these recommendations,
oncology care in developing countries such as Ethiopia we also considered data saturation to ensure that the
is scarce. Despite the relatively high burden of childhood number of study participants was adequate. Data satura-
cancer in Ethiopia,28 the paediatric oncology unit of tion was evaluated based on informational redundancy,
Tikur Anbessa Specialized Hospital (TASH) is the only meaning that it was considered to have been achieved
unit in the country providing comprehensive treatment once no new information or categories emerged from the

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use any prespecified dimensions of stress or coping
Box 1 Interview discussion guide
strategies in order to avoid preconceptions that might
1. Tell me about your experience as a parent who has a child with obscure, reframe or leave invisible key themes. Instead,
cancer. we decided to allow information on stress sources and
2. What did you find hard when you learnt that your child had cancer? coping strategies to emerge from the raw data. The
3. What has been hard for you during your child’s cancer treatment? analysis involved an iterative process of listening to the
4. What things do you do to cope with your child’s cancer/cancer interviews, reading the transcripts, assigning codes and
treatment? finally identifying patterns in the material. To this end,
5. How do you evaluate your current level of stress compared with when the authors and research assistants first read the tran-
you first heard that your child had cancer?
scripts independently several times. Texts were then
broken down into meaningful units consisting of key
data and additional interviews no longer generated new phrases from the transcripts. These meaningful units
categories. were then condensed and labelled with codes, which
The principal researcher (LD) recruited the partici- were developed inductively as they emerged from the
pants with the help of nurses working at the unit. Factors data. Codes identify features of the data that are perti-
considered during participant selection were the ages of nent to the research questions and organise data into
parents and children, residence, time since initial diag- more concise ideas that can subsequently be grouped
nosis and cancer treatment stage. Parents of children diag- into topics. The identified codes were then sorted
nosed with any type of cancer and being treated in either into different categories and codes with a high degree
the paediatric oncology unit or the outpatient depart- of agreement between the coders were discussed and
ment were considered eligible for inclusion. Parents of sorted into subthemes. Finally, the subthemes were
critically ill children and those with known mental health organised into overarching themes. Representative
problems were excluded. All parents invited to the study quotes for each theme are presented in the Results
agreed to participate. section below. The analysis process was performed
using A​ TLAS.​ti V.8 software.
Interviews
Interviews were conducted by the primary author (LD), Trustworthiness
who was not part of the child treatment team, with assis- Trustworthiness in qualitative studies depends on
tance from one note-­taker (DB). The researcher used the transferability, credibility, dependability and confirma-
interview guide presented in box 1, which was developed bility.24 33 Credibility was established by having the primary
by the research team based on the chosen research ques- researcher stay at the study site for an extended period
tions. Before actual data collection, the designed inter- to become familiar with the setting, by receiving contin-
view guide was pretested by interviewing three parents uous comments from peers during peer debriefing, and
of children with cancer who were not included in the by using negative case analysis. Dependability was estab-
sample. The authors then discussed the guide based on lished by thoroughly describing the methods that were
these preliminary interviews and made modifications to used, maintaining meticulous records of interviews and
improve clarity and understandability. A series of prompts documenting the analytical process. To confirm that the
were used to encourage participants to clarify or expand interpretations of the findings were derived from the data
on their responses, such as ‘What else was hard?’, ‘Can rather than a figment of the investigators’ imagination,
you tell me more?’ and ‘What else have you done?’. In all events that occurred in the field, personal reflections
addition to verbal communication, facial expressions to the study and phenomena that arose during the inves-
and other non-­verbal responses of the participants were tigation were recorded along with relevant aspects of
recorded by making field notes to improve understanding the researchers’ personal history. The investigators were
of participants’ responses. The interviews were conducted sceptical or in doubt if the information felt incorrect
from November 2020 to January 2021 in locations where and tried to create rapport and trust through prolonged
the respondents felt comfortable. Their duration ranged
attachment with the informants. In addition, data source
from 12 to 23 min. All interviews were audio-­recorded.
triangulation was used. To facilitate the transferability
Interviews were transcribed verbatim in the original
of research findings, a thick description was used which
languages (Amharic and Affan Oromo) and then trans-
involves elucidating all the research processes. In addi-
lated into English. The translated transcripts and the field
tion, purposive intensity sampling was used to focus on
notes made by the author (LD) and the note-­taker were
key informants with particular knowledge about the issues
used for analysis.
of interest to maximise the depth of the findings, and
Data analysis maximum variation purposive sampling was performed
Data were analysed using the inductive purely data-­ when selecting study participants.
driven thematic analysis method.32 Despite conducting
an extensive literature search, we found no similar study Patient and public involvement
done in the study area. Therefore, we did not want to No patients were involved.

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Table 1 Characteristics of the interviewed participants
Mothers Fathers Total
Variable Median Range Median Range Median Range
Parent’s age 32 25–41 30.5 28–40 32 25–41
Child age in years 5 2–13 3.5 <1–12 4 <1–13
Time since diagnosis in months 7 1–48 2.5 1–12 5 1–48
Total number of children parents have 3 1–5 4 1–8 3 1–8

RESULTS Other respondents described cancer as a severe and

Participant characteristics horrible disease and were uncertain about whether it
Interviews were conducted with 15 parents (nine mothers could be cured. One mother said, “… my child’s illness
and six fathers) aged from 25 to 41 years. Eight partici- is a terrible disease. I know it hurts people very severely.
pants (five mothers and three fathers) came from urban I also know that it may or may not be a curable disease.”
parts of Ethiopia and 10 had three or more children. Six Another mother said, “It is a horrible disease. I heard it
parents had no formal education (four mothers and two is a severe and challenging disease.” A father from Addis
fathers), four (two mothers and two fathers) had attended
primary education, three (two mothers and one father)
had attended secondary education and two (one mother
Table 2 Sources of stress, conditions decreasing stress
and one father) had attended university/college. Four
and coping strategies among parents of children with cancer
of the participants were unemployed. Six of the children
Themes Subthemes/codes
were boys. The ages of the children with cancer ranged
from 10 months to 13 years, and the time since diagnosis Sources of a. Parents’ understanding of cancer
stress
varied from 1 month to 4 years. Table 1 summarises the b. Child health related

participants’ characteristics. ► Acquiring the disease at an ► Having a child with a

early age severe/lifelong illness
The interview analysis identified the following overar- ► Fear of cancer relapse ► Worsening of illness
ching themes: ► Fear of treatment side effects
1. Sources of stress. ► Clinical manifestations of the
child
2. Conditions that reduce stress.
c. Health facility related
3. Coping strategies.
► Waiting time before starting ► Referral to TASH
These themes and the subthemes are presented in treatment ► Receiving inadequate
table 2, and figure 1 shows how they are related. ► Long hospital stays information
► Unavailability of chemotherapy
drugs
Theme 1: sources of stress
d. Social/financial support related
Parents were asked to describe their major sources of
stress following their child’s diagnosis. Twenty-­two codes ► Lack of social support ► Effects of peer
► Financial problems influence
were identified from their responses and grouped into ► Disruption/cessation of child’s ► Parents’ working
five categories: (a) parents’ understanding of cancer, (b) schooling conditions
child health related, (c) health facility related, (d) social/ e. Witnessing others’ bad experiences
financial support related and (e) witnessing others’ bad Conditions a. Child treatment related
experiences (table 2). decreasing
stress
► Experiencing side effects less ► Knowledge about
than anticipated treatment side effects
Parents’ understanding of cancer ► Hope for a positive treatment ► Starting treatment
outcome
Some parents stated that they had no knowledge or under-
b. Hospital related
standing of cancer before their child’s diagnosis. Further-
► Perceived good care ► Trust in health
more, some parents expressed their understanding of ► Counselling from health providers
cancer in terms of the curability of the illness, the severity providers ► Short distance to
of the disease, treatment duration and the importance of hospital

early treatment (see table 3). c. Social related

A father from a rural part of Ethiopia indicated that ► Financial support ► Witnessing positive
► Discussions with other parents outcomes for other
he knew nothing about cancer before his child’s diag- ► Receiving care for children at children
nosis. Similarly, when asked to describe cancer, a mother home ► Social support
from a rural area said, “I had no information about this Coping ► Praying ► Accepting the child’s
disease before. I had sometimes heard it mentioned in strategies ► Discussions with other people/ condition (ie, doing
parents nothing)
the media but I do not have anything to say about it.” ► Crying ► Denial
Another mother also stated that she had only heard the
TASH, Tikur Anbessa Specialized Hospital.
term ‘cancer’ when people talked about it.

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one mother stated, “the illness worried us because unlike
other children of her age, she could not see or grasp
anything.”
The side effects of treatment were another cause of stress
expressed by parents. Parents were worried about the
side effects of treatment based on either their own expe-
riences or expectations based on knowledge of others’
experiences. A mother of a child who had received his
second round of chemotherapy said, “Yes, I am worried
about the side effect of the drug. They (health providers)
already told me about the possible side effects. Since my
child is very young and small, I do not know whether he is
going to tolerate the side effects or not.” Another mother
Figure 1 Relationships between sources of stress in parents stated that she became stressed after receiving informa-
of children with cancer, conditions that reduce their stress tion about another parent’s child experiencing treat-
and the coping strategies that they adopt. ment side effects due to fear that her child may respond
similarly.
Ababa stated that cancer was ‘the most challenging and Regarding his child’s sickness, one father said that the
complicated disease’. child’s inability to breast feed was a leading cause of his
Parents also discussed the time needed to complete stress and mentioned it as a major symptom of his child’s
treatment for cancer and compared it with that required illness. Discussing a deterioration in his child’s health, a
for other diseases. One parent from Addis Ababa said father from Addis Ababa who had stayed in the hospital
cancer is a complex disease because its treatment takes a for more than 6 months said, “after we were to finish
long time. He explained the situation by saying, “… the chemotherapy and getting ready to be discharged, the
disease itself is not something that heals within a short child developed a new health problem and stayed for
period. This is why cancer is a very difficult disease.” three more months. This was stressful for the child, me,
and my family.”
Child health-related stressors Parents also mentioned fear of death as a source of
Parents mentioned several sources of stress relating to the stress. A mother from an urban town outside Addis Ababa
child’s health condition. These included acquiring the stated, “When I look at his face, I may find him looking
disease at an early age, the child showing signs of delayed weaker. I become most stressed when he refuses to eat
development, fear that the child’s cancer might relapse, foods or breastfeed because of his weakness.” A mother of
fear of treatment side effects, considering the child’s a daughter who visited the centre for a routine check-­up
condition to be severe and life-­threatening, having a child after completing chemotherapy revealed that her biggest
with severe clinical manifestations, fear of the illness wors- worry was fear of her daughter dying. The main reasons
ening and fear of the child losing body parts. Parents also for this were that she witnessed her neighbour die from
stated that they did not expect cancer to occur at an early cancer and that people had told her cancer is an incur-
stage of life and that having a young child with cancer was able disease.
stressful because they feared that their child might not Fear of their child losing a body part was another major
tolerate either the illness or the available treatment. In cause of stress for parents. A mother commented, “I
addition, parents were stressed because the child devel- accepted the removal of the eye because I felt it is better
oped signs of developmental drawbacks. For example, to lose one of her eyes than losing her. But I felt very bad
that my baby lost one of her eyes.” A father of a baby girl
who was afraid of his daughter losing her leg stated, “I am
Table 3 Descriptions of cancer provided by parents of
children with cancer not sure about her leg. I saw a boy in this room whose leg
was amputated because of cancer. So, I am worried that
Question Responses from parents
this might happen to my daughter.”
What is ► Lack of information
cancer for – Do not know anything
you? How do – Never heard about cancer before Health facility-related stressors
you describe – I have no information Parents mentioned five stress-­ causing conditions that
cancer? – Know only the name related to health facilities. These included long waiting
► Severity
times for diagnosis and starting treatment, long hospital
– Severe and challenging disease
– Horrible disease stays, limited drug availability, being referred to TASH
– Uncertainty about cures for the disease and receiving inadequate information.
– Terrible disease
► Duration of treatment Long waiting times for diagnosis and starting treatment
– Long duration of treatment The long waiting time associated with diagnostic proce-
– Needs early treatment
dures and starting treatment was repeatedly stated as

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being stressful. Parents mentioned that conducting diag- its high patient load, due to which the parents feared that
nostic procedures had taken a significant amount of time; admission, receiving treatment and other services would
one father said that he had spent more than 2 weeks in take a long time. A mother from Hawassa town stated her
Addis Ababa for a single diagnostic procedure. Most husband was also scared and lost hope when the child
parents mentioned that their child’s health had deterio- was referred to TASH. She said, “After confirming the
rated while waiting because they could not receive treat- diagnosis, they referred us to Tikur Anbessa Hospital. No
ment before the diagnosis was confirmed. A father from family member had been treated at Tikur Anbessa before,
the Afar region added that the prolonged waiting time but it is a scary place to be as we have heard about it.”
made it impossible to find anywhere to spend the night She stated that she considered the hospital a frightening
despite having enough money to pay for accommodation place because of the negative information she had heard
because hotels were unwilling to rent a room to a family about it from mass media and other people; as she put it,
with a sick child. Another father from the Amhara region “Yes, we were scared when we heard the child was referred
said he was concerned about finding a place to stay until to Tikur Anbessa Hospital. Then we came here, and our
their next appointment; as he put it, “after we left the stress got worse when they confirmed our child’s diag-
hospital, she got sick and it was difficult for us to return nosis of cancer.”
to this hospital. I am worried because getting back to this
hospital is very difficult.” Receiving inadequate information or no information at all
Parents of children with cancer reported that the infor-
Long hospital stays mation they obtained from healthcare providers was
Parents also mentioned the long duration of their child’s inadequate or that they received no information at all.
hospitalisation as a source of stress. For example, when Moreover, they said that when health providers did supply
asked what made his stress worse, a father answered, “my information, it consisted only of general and non-­specific
child’s inability to recover quickly.” He added, “unlike descriptions of the child’s illness and its treatments. Infor-
other diseases, you cannot get treatment only once and go mation about why the child needed a specific drug, the
home with your child to continue your work. You cannot side effects of drugs, the future effects of the disease and
think like that. The treatment takes a very long time. That what to expect concerning the child’s illness was highly
creates many burdens.” A mother from Hawassa town said desired but rarely provided. This lack of information and
that her prolonged stay in the hospital made her worry clarity caused stress. A mother of an under-­5 girl who was
about the two children she had left at home; she said, receiving chemotherapy for the fifth time stated, “They
“When we heard we should take him to Tikur Anbessa only tell me the frequency and time to take the drug.
quickly, we did not consider who would look after the They did not clearly tell me about the benefit or side
other children. We stayed at this hospital for 45 consecu- effects of the drugs my child is taking.” She also added
tive days. We were concerned about what would happen that health providers only gave general information, such
to the children left at home if we stayed here any longer.” as saying that chemotherapy may have some side effects
without specifying what side effects should be expected.
Lack of drugs
A father of a newly diagnosed infant daughter said, “…
Regarding issues related to chemotherapy, parents said
different investigations were performed, including a CT
they were worried because they were uncertain about the
scan, and they just said there was a tumor on her kidney,
outcome of their child’s treatment and because chemo-
therapy drugs were not regularly available at the hospital. but they could not specify whether it is cancer or not.
They also added that the drugs were very expensive and During the investigation process, I got so worried because
that some were hard to find even in private drug stores. A no one was responsible for telling us about the child’s
father commented: exact diagnosis.”
The lack of information about the side effects of treat-
Not all prescribed drugs are available in this hospital. ment also aggravated parents’ stress levels. A father said
You need to buy from private drug stores. This creates that some of his stress could have been prevented if he
its own burdens. First of all, drugs are not available had been informed about the treatment’s side effects:
even in private drug stores, and secondly, they are ex-
pensive if we can find them. This can be a cause of They told me that the only way to treat the child was
stress, and it is very stressful. through cancer medication called chemo, but they
did not explain to us the adverse effect of this med-
ication, such as loss of appetite or other side effects.
Referral to TASH Because of this, we were shocked and had to run to
Parents who came from outside Addis Ababa described the emergency by the time she started to show these
being referred to a tertiary hospital like TASH as a source side effects.
of stress. Because TASH is Ethiopia’s highest referral
hospital, parents interpreted a referral to TASH as an indi- He added, “we were worried because of the side effects
cation of the seriousness of their child’s illness. The other of the medication, but if they had told us at the beginning
reason parents described referral to TASH as stressful was of the treatment, that might make things better.”

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Social/financial support-related stressors salary; their child’s illness worsened the family’s financial
Social and financial factors were another source of stress situation. She said, “my husband is the only one who has
mentioned by patients. Stressors in this category included a job. It is not easy to live with his salary alone. There are
a lack of social support, financial problems, parents’ different kinds of payments to make like rent, transporta-
previous bad experiences, disruption or cessation of the tion, and so on. It is very hard.”
child’s schooling, peer influence on parents and parents’ In addition to the overall cost of treatment, costs
working conditions. Stress relating to a lack of expected associated with transportation, diagnostic procedures
social support and financial problems was mentioned and other hospital-­ related costs were mentioned as
more frequently than other factors. sources of stress. One mother from rural Ethiopia said,
Social support: parents reported a lack of social support “someone may not have adequate money, but a lack of
from families, significant others and friends as a cause of money to pay for a child’s treatment is worrisome. I am
stress. The most frequently mentioned stressor in this afraid that my child may not get treatment because of a
context was concern about a lack of support for children lack of money. I am worried about that.” A father also
who had been left at home. A mother of a daughter who said, “Here for your child’s treatment, you need cash
came from a rural part of the country and had left two to buy things like drugs and pay for lab investigations.
of her children at home mentioned that people were You cannot get treatment for the child without money.
not providing enough support. She was concerned that
This by itself is stressful for me.” Regarding the cost of
it was difficult to get people to help, especially during
chemotherapy, one mother said, “I did not forget the
crop harvesting time. She stated, “all my worry is about
bad feeling I had when the doctor told me to buy an
the children I left at home. I always think who is going to
expensive drug.”
prepare and give them food? I worry about whether they
Both mothers and fathers reported leaving jobs because
are eating breakfast or can get lunch? I am also worried
of their child’s illness, and the loss of employment was
about whether they get enough food.”
Social support can also take the form of financial another source of stress. For example, one mother said,
support. Accordingly, two parents discussed social “I was working at a private institution. She gets treatment
support in terms of financial assistance provided, and one every week, but they did not give me permission to leave
father associated it with a lack of assistance with farming. every week. It was challenging to work, so I left the job.”
A mother reported that she was very stressed because she Many parents also said that having to cease work due to
and her partner had no relatives or anyone else to support their child’s illness had contributed significantly to their
them financially, so they had to cover all of the expenses financial problems.
related to treatment and living costs by themselves. A
father from a rural part of the country also expressed Witnessing others’ bad experiences
worry about who would harvest his crops and look after Witnessing bad experiences at a hospital or at home,
his cattle. The lack of a social network and social interac- including witnessing death, the loss of a body part or
tions was also mentioned as a source of stress. other adverse outcomes of childhood cancer, increased
Another source of parental stress relating to social parents’ stress and made them fear that their child might
issues was disruption or cessation of the child’s schooling suffer a similar fate. One mother said:
and the associated effects on the child’s relationships
with their peers. Illness and treatment procedures often When I see a child’s death in the ward, I lose hope
forced children to discontinue their schooling or to fall and feel my child might be the next one …When I
one or more grades behind their friends. A mother from see their health deteriorate, I feel bad inside. I some-
Addis Ababa said, “She discontinued school three times. times cry when I hear that a child has died, and I feel
The discontinuation of the school was stressful.” She also very depressed.
added, “answering questions from other people about
Some parents stated that during their hospital stay,
why she is still in grade four while her friends are in grade
seven gives me bad feelings, but we cannot do anything they did not see or hear about any child whose health
about it.” had improved after starting treatment. This increased
Financial problems mentioned by respondents were their level of stress because it made them lose hope in the
related to overall living expenses, living expenses in possibility of successful treatment. A father with a newly
Addis Ababa, overall treatment costs and the cost of diagnosed baby daughter commented: “Everything I hear
buying chemotherapy drugs. Parents stated that expenses is not good. When I see other patients, the treatment took
associated with the child’s sickness made covering living a long time, when I see their condition, I understand that
expenses harder than before. A mother from Addis Ababa it is going to be very difficult. I cannot tolerate this.” Simi-
whose child had completed chemotherapy remembered larly, a mother of a baby boy stated: “I never saw anyone
the time when her child was first admitted saying, “In completely cured. When we ask others, they tell us they
addition to my kid’s admission, I had to search for some- were here for a long time, for three months, four months,
thing to eat. By that time, I was so stressed and confused.” and they are still coming again and again. We did not see
Another mother described living on just her husband’s a child that was completely cured.”

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Theme 2: conditions decreasing stress Social factors
Parents identified 14 factors that helped to reduce their Parents reported that witnessing positive treatment
level of stress, which were divided into three groups: outcomes for other children admitted to the hospital had
(a) child treatment-­related factors, (b) hospital-­related helped to reduce their stress levels. Parents described that
factors and (c) social factors. before coming to the hospital, they thought childhood
cancer was not a common phenomenon and was some-
Child treatment-related factors thing that had only happened to their child. However,
The commencement of treatment, experiencing hope parents reported that knowing this disease can happen
for a positive treatment outcome, knowledge about treat- to anyone and getting a chance to meet and talk with
ment side effects and the child experiencing fewer side other parents reduced their level of stress for two reasons.
effects than had been anticipated were mentioned as First, seeing other children with more complicated condi-
factors that reduced parental stress. tions helped parents feel that their child was in a better
In Ethiopia, the process of referring patients from condition than others and could therefore have a better
primary hospitals to tertiary hospitals like TASH takes chance of survival. Second, witnessing and hearing testi-
a long time. Accordingly, many of the interviewees had mony from other parents about a child improving after
spent a lot of time waiting for the referral process to be receiving treatment reduced parents’ fears of losing their
completed before their child could receive treatment. child. Discussing childhood cancer with other parents
The ending of this wait and the commencement of treat- also reduced parents’ level of stress. The influence of
ment were therefore a significant stress-­relieving factor. these factors is demonstrated by the following quotations:
For example, one mother said, “as my child took her
At first, I thought my child was the only one to devel-
treatment for the first time and I heard she has a chance op a disease like this at this early age, but when I came
to heal, I became calm.” here, I saw many children with the same health prob-
Positive treatment outcomes, or hope for such lem as my child…. when I saw some improvement of
outcomes, was also associated with reduced stress. Parents the health condition of other children, this helped
stated that they became less stressed after receiving my stress to decrease from time to time. (a mother of
information about the possibility of a positive treatment a daughter)
outcome and observing improvements in their child’s
health. A mother commented: There were other very severe diseases. When I saw
other complicated illnesses and myomas, I consid-
At first, I thought her illness had no treatment (cure), ered my child’s illness to be better than the others.
and she has no hope of surviving. When I saw her get- (a single mother)
ting well from time to time, I got some relief. I like to ask all people about their experience. And
they told me they were in the same position when
they first came to this center, but now their child
Hospital-related factors has improved greatly … I also saw a child who had
Parents mentioned that their level of stress decreased a similar illness to mine but was now showing clear
because they felt healthcare providers took care of their improvement. This helped me to hope that my child
children. One mother who stayed at the treatment centre will also get well. (a mother of a baby boy)
for 12 days stated, “I have great hope that he will be
cured after completing the treatment because the health Receiving financial support was another major stress-­
providers are following the child very closely. He is also reducing factor. One mother said that her level of stress
getting the drugs appropriately.” decreased significantly after receiving support from a
Having a good relationship with staff also helped charity that covered the cost of the child’s treatment and
reduce parents’ stress levels. One parent commented, their living expenses. A father reported that he received
“There was a doctor I met at the unit, and I considered financial support from different people, including some
him like my brother. He told me that my child had a he did not know, which helped him to cover some of the
good chance of survival. After that, I became much more child’s treatment costs. Another mother said that having
hopeful.” the children’s grandmother look after other children
The respondents mentioned that although staff had who had been left at home helped her not to worry about
high workloads, they tried to provide emotional support them.
to the parents. A mother of a child attending follow-­up
appointments 8 months after completing chemotherapy Theme 3: coping strategies
described the relationship between patient load and Praying and religious beliefs, crying, accepting the child’s
healthcare providers’ efforts by saying “they will help you condition and doing nothing, having discussions with
when you are stressed. Sometimes they grumble, they may health providers and denial were commonly mentioned
be stressed out when there are too many people. By this as coping mechanisms for parents of children with cancer.
time, you may feel forgotten. But usually, they also empa- Many parents said that once they learnt the diagnosis and
thize with you, they are good for me.” the seriousness of their child’s illness, they felt that the

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only thing they could do was pray. A mother stated, “I between a lack of knowledge about cancer and stress.7 39 40
cannot do anything. I will be stressed for the time being, Also consistent with earlier studies41 is the fact that the
and then I pray. I pray for his mercy to cure my child. … I interviewed parents said they were stressed because health-
can do nothing more than pray for His mercy. What else care providers did not give them detailed and relevant
I can do about it?” Similarly, a father said, “we get solace information about cancer and their child’s health. This
from the word of God. We know there are always chal- indicates that it is important to provide information and
lenges in life, and we try to overcome them with God’s raise awareness about the disease and that strategies to
help.” Another mother commented, “I pray to God. I say, help and encourage staff to give parents information
‘You gave me this disease please give us the cure too’. … about cancer could help reduce stress and promote posi-
all I can do is pray. What other option have I? Nothing.” tive provider–patient contact.42 43
Another coping strategy reported by parents was The interviewed parents also said that getting detailed
accepting the child’s condition. One mother said, “… I information and counselling from healthcare providers
said, how can I lie about what God gave me? I accepted about the chance of survival, treatment duration,
my child’s diagnosis and started telling people the truth.” schedule and treatment benefits reduced their level
Parents also used talking to other people and friends of stress. According to previous studies on Ethiopian
about the child’s health condition and their stressors as paediatric oncology, nearly two in five children receiving
a coping strategy. For example, a mother stated, “Some- chemotherapy develop adverse drug reactions,44 45 which
times you feel relief when you talk with other people. indicates that parents often either see their own children
Some people make it easy when they talk about it. You suffering these side effects or witness another child strug-
forget about it when they tell you she will be fine; you gling with them. Uncontrollable fears about the child’s
forget about your stress for the time being.” death and concerns about cancer relapse are known to
Parents stated that if they believed they could not consume parents’ energy even after curative treatment of
change the situation and were out of options, they would their child’s cancer.46 These findings indicate a need to
cry to get relief from stress. A mother said, “I cannot do ensure effective information exchange between oncolo-
anything. I sometimes cry.” Another mother, when asked gists and patients,29 47 and to develop well-­designed need-­
what she usually did when she was stressed, stated, “we based stress control and reduction interventions that
did everything possible to get treatment and to complete are initiated at the point of cancer diagnosis, continue
treatment.” Another mother denied the truth of her throughout the treatment process and remain available
child’s cancer diagnosis because she had never previously to the parents after the treatment is completed.16
known about childhood cancer and said that she never In line with the previous research,48 49 the findings
expected her child to be diagnosed with such a deadly of this study also show that the child’s clinical manifes-
disease. The interviewed parents also said that discussing tations, the severity of their illness, uncertainty about
their child’s condition with healthcare providers helped disease outcomes and the risk of relapse/death were all
them to cope with their situation. One father also stated significant sources of parental stress.21 50 51 In keeping with
that sharing his feelings and stress with the oncologist this finding, the review of Vrijmoet-­Wiersma et al iden-
treating his child helped him to cope. tified the perceived severity of cancer and treatment as
risk factors associated with post-­traumatic stress syndrome
and post-­traumatic stress disorder.22
DISCUSSION Another major source of parental stress identified in
Paediatric oncology care in Ethiopia is very limited and this work was the unavailability of chemotherapy drugs
frequently incomplete, inadequate or simply unavailable. within the hospital and pharmacies. Some of these chemo-
Moreover, there is very limited palliative care for children therapy drugs were unavailable in the public hospital but
with incurable diseases.6 7 As in other low-­income coun- available in private pharmacies. Others were simply not
tries, healthcare is severely hindered by a lack of trained available in the country at all, so parents were expected
professionals,34 insufficient supplies of drugs and inade- to import the drugs by themselves. This makes chemo-
quate health facilities.35 36 These limitations in combina- therapy drugs unaffordable and worsens parental stress.38
tion with low cancer awareness (especially in rural parts This finding is consistent with the national cancer control
of the country) result in fear of cancer and tend to cause plan of the Ethiopian Federal Ministry, which notes that
delays in seeking treatment.7 37 38 Parental stress associ- no chemotherapeutic agents are included in the Ethio-
ated with childhood cancer in Ethiopia has not previously pian Essential Medicines List.52 This indicates that more
been studied in detail; this study is the first to explore work will be needed from the ministry to the hospital
causes of parental stress relating to childhood cancer, level to increase the availability of these drugs.
factors that help reduce parents’ stress levels and coping Socioeconomic factors such as inadequate hospital
strategies used by parents from the parents’ perspective. facilities, familial financial constraints and lack of social
The results obtained indicate that Ethiopian parents support were also mentioned as causes of stress. Cancer
have insufficient awareness of and knowledge about treatment in Ethiopia is characterised by very long waiting
childhood cancer, which caused stress and fear. This is times because of the limited availability of health facilities
consistent with previous reports indicating a relationship and resources; an earlier study found that the median

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waiting time for curative cancer treatment in Ethiopia Emotion-­ focused strategies such as praying and reli-
was 150 days.53 Parental stress was also increased by the gious faith, crying, accepting the child’s condition, doing
prolonged referral process and the need for multiple nothing and denial were all mentioned. Ethiopia is a
hospital procedures to diagnose and treat child cancer. deeply religious society,29 which explains why religious
Parents from rural areas commented on the high cost beliefs and praying were mentioned as primary stress-­
of travelling to and living in Addis Ababa; together with coping mechanisms. Several other studies have also
the often lengthy wait before starting treatment, this concluded that religious faith plays a significant role
increased their stress and financial difficulties. Further, in facilitating coping and reducing parental stress.65–71
as TASH is the country’s only facility providing paedi- Given the high religiosity in Ethiopia, these findings indi-
atric oncology care, parents from remote rural areas had cate a need to further investigate the potential role of
limited opportunities to return home and care for other religiosity as a source of resilience among parents of chil-
children for financial reasons and because of difficulties dren with cancer. It also shows that healthcare providers
with transportation. Being unable to leave the ill child must be respectful of and sensitive to patients’ religion or
alone in the hospital and depending on others to take spirituality.
care of children who remained at home were stressful for Non-­religious emotion-­ focused coping strategies
the parents. Being unable to work while taking care of the mentioned by the participants included crying, accepting
sick child also reduced family income and exacerbated the child’s condition, denial and doing nothing. As
parental stress.54 These findings confirm the increased emotion-­ focused strategies are commonly used when
vulnerability of low-­income families with children under- dealing with uncontrollable stressors, our findings indi-
going cancer treatments55 and indicate a need to further cate that Ethiopian parents experienced hopelessness
decentralise cancer treatment centres to peripheral parts and lack of control over their situation, which may have
of Ethiopia to ensure equal access to care. been exacerbated by dire economic and social condi-
The findings also emphasise the pivotal importance tions. Emotion-­ focused coping activities also tend to
of social support for reducing stress among parents of make people distance themselves from issues, making it
children with cancer. In line with previous reports,44 56–59 less likely that the stressor will be addressed.26 72 Accord-
parents mentioned feeling less stressed after receiving ingly, one participating parent said that denial reduced
social support such as care for children who remained her ability to secure social support. Another stated she
at home, assistance with farming, financial support and did not initially disclose her child’s condition to anyone
emotional support in the form of reassurance. Parents because she did not accept the diagnosis herself. However,
also found that discussions with other parents of chil- she also noted that she began coping with the situation
dren with cancer helped to reduce their stress relating better once she accepted the diagnosis and discussed
to the negative effects of childhood cancer.60 These find- it with others. Parents who use emotion-­focused strate-
ings indicate a need to strengthen governmental and gies may thus exhibit low treatment-­seeking behaviour,
non-­governmental financial support for parents of chil- be less likely to adhere to child treatment and accept
dren with cancer who lack social support. In addition, the child’s condition,73 which could adversely affect the
because our respondents found that peer discussions child’s treatment process.74 In accordance with previous
with other parents of children with cancer reduced stress, reports,73 75 seeking discussions with health providers
giving parents opportunities to share their experiences about the child’s health condition, prognosis and treat-
by creating social support networks could be highly ment procedures was the only problem-­focused coping
beneficial. strategy mentioned by respondents. This indicates the
Previous research has shown that parental hope is asso- importance of giving parents reliable information to
ciated with better mental health as well as less severe stress help them cope with stress. Oncologist shortages might
and maladjustment after a child’s cancer diagnosis.61–63 In make this difficult to do, although it could potentially
this work, parents said that they became more hopeful be achieved by increasing the involvement of nurses and
and started having positive expectations concerning their social workers.
child’s condition after meeting people with a history of
cancer recovery. Conversely, in accordance with an earlier
report,64 parental stress increased after encountering CONCLUSIONS
other children with more complex cases of cancer. It is Childhood cancer has a significant impact on the family
therefore important for healthcare providers to estab- system, drastically changing the context within which
lish arenas for parents to share experiences but also to parenting occurs. Parents of children diagnosed with
moderate the discussions, clearly explaining the similari- cancer are profoundly affected by their child’s diagnosis
ties and differences between children’s health conditions and the associated treatment demands. Parental stress
and possible treatment outcomes. may interfere with health decisions, attendance of clinic
The interviewees mentioned only a few coping strat- appointments and the parent–child relationship. This
egies that they used to manage stress. In keeping with study identified several sources of stress, conditions that
earlier findings,26 their strategies primarily involved reduce parents’ stress and strategies used to cope with
emotion-­ focused rather than problem-­ focused coping. stress by Ethiopian parents of children with cancer. The

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3
findings demonstrate the impact of socioeconomic and Department of Oncology, Addis Ababa University School of Medicine, Addis Ababa,
cultural factors on parents’ experiences and reveal a clear Ethiopia
4
Department of Pediatrics and Child Health, School of Medicine, Addis Ababa
need for social and economic support together with the University, Addis Ababa, Ethiopia
decentralisation of oncological care within the country to 5
Department of Applied Information Technology, University of Gothenburg,
ensure access to care in both rural and urban areas. Gothenburg, Sweden

Limitations and future research Acknowledgements The authors thank all study participants for the information
The current study has some limitations. First, inter- they provided and their tolerance during the interviews. We also thank the staff of
the paediatric oncology unit for assistance during data collection.
views were only conducted with parents, so children’s
perspectives are missing. Future research will focus on Contributors LD conceived, designed, implemented and conducted data
analysis. LD, AAddissie, EG, AAbraha, HA and NBL supervised, reviewed, corrected
how parental coping affects their child’s coping and manuscript draft and interpreted the study result. All authors read and approved the
vice versa. Further, only one parent from a given family final manuscript.NBL accepts full responsibility for the work and/or the conduct of
was interviewed. Future studies will therefore investigate the study, had access to the data, and controlled the decision to publish.
dyadic coping strategies. It would also be beneficial to Funding This work was supported by the Swedish Research Council
interview nurses and oncologists about their perspec- (Vetenskapsrådet; grant number: 2017-­05410, https://www.vr.se/).
tives on parental stress, coping strategies and the ways Competing interests None declared.
health providers support parents. Second, despite their Patient and public involvement Patients and/or the public were not involved in
anonymity, some participants may have been unwilling the design, or conduct, or reporting, or dissemination plans of this research.
to openly criticise healthcare providers for fear that it Patient consent for publication Not required.
might negatively influence the care of their children and Ethics approval Ethical clearance was obtained from the institutional review board
their relationships with healthcare staff. The purposive at the Department of Oncology, School of Medicine, College of Health Sciences,
nature of the participant selection also limits the trans- Addis Ababa University (protocol number ONC IRB 27). Further permission was
obtained from TASH’s paediatric oncology centre. All participants were informed
ferability of the findings to differing populations. Future about the study’s aim and the interview procedure, and were asked to sign a
research could also focus more on stress and coping strat- consent form before participating in an interview. Participants were guaranteed
egies of parent groups with differing levels of education confidentiality, told that they could withdraw from the study at any time without
and different economic statuses. Finally, as the study repercussion and permitted to refrain from answering questions that they felt
uncomfortable with. In addition, participants were allowed to stay after the
was conducted during the early stages of the COVID-­19 interview had ended to discuss their thoughts and emotions if they felt the need
pandemic, the sampling may have been confounded by for further reflection. All parents who were approached agreed to participate in the
factors such as fear of infection, especially in parents of study. Participants found to have significant levels of stress during the interviews
children receiving immunosuppressive treatments. were offered referrals for further screening and follow-­up.
Provenance and peer review Not commissioned; externally peer reviewed.
Practical implications Data availability statement Data are available upon reasonable request. The
Unlike in many developed countries, psychosocial onco- dataset analysed during the current study will be available from the corresponding
logical interventions and other counselling services are author on reasonable request.
largely unavailable in Ethiopia. The results presented Open access This is an open access article distributed in accordance with the
herein could be used to develop content for such inter- Creative Commons Attribution Non Commercial (CC BY-­NC 4.0) license, which
permits others to distribute, remix, adapt, build upon this work non-­commercially,
ventions. Since the number of oncologists in the country and license their derivative works on different terms, provided the original work is
is very limited, counselling services could be provided properly cited, appropriate credit is given, any changes made indicated, and the use
by trained nurses and social workers assigned to the is non-­commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
paediatric oncology unit. Our analysis suggests that this ORCID iDs
counselling should include providing information about Leul Deribe http://orcid.org/0000-0003-3379-3046
cancer, the lack of which caused stress and fear among Nataliya Berbyuk Lindström http://orcid.org/0000-0002-4701-7884
many of our respondents. Information about treatment
and diagnostic procedures offered at TASH, including
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