There were 40 caregivers of children with CP who participated in the study with mean
age, 27 years. The details of the demographic characteristics of the study participants
including mean age of the children, occupation of their caregivers, level education
of the caregivers and the children and sex are presented in table 1.
Following the transcription and coding of the data obtained from the qualitative interview,
several themes were generated for both the facilitators and the barriers. For the
facilitators, there are improvements in the child’s condition, family support, improvements
in the condition of other children with CP, empathy, encouragement by the therapist
managing the child and cooperation of the child during home program. For the barriers,
there are number of children the caregiver has, caregiver’s occupation and inadequate
financial resources. Figure 1 summarizes the barriers and the facilitators.
The Barriers
Theme 1: Number of children
The number of children a caregiver has, may impact on the kind of attention she may
give to the child with CP. In this society, women usually give birth to many children.
In this study, the range of number of children is 6.
“I have other children in addition to this one and they are all young. Thus, they
always need my attention, and this makes me some times to delay his home programs”…………….Participant number 6. The age (28 years) and the time taken for caregiving (3 years) of this participant
are a bit above the mean age and mean time taken for caregiving of the participants.
Additionally, the age of the child (3 years) the participant offered caregiving to,
is the same with the mean age of the children.
“As I have told you earlier her mother has died since when she was 3 month;
and as you can see me too I have my own baby who is her age mate. But, I have no alternative
other than to take her as there is no one to take good care of her other than me as
her aunt”…………….participant number 15. The age (31 years) and the time taken for caregiving (3 years) of this participant
are above and slightly above the mean age and mean time taken for caregiving of the
participants. Additionally, the age of the child (3 years) the participant offered
caregiving to, is the same with the mean age of the children.
“As now she have a younger sister so sometimes I have no choice other than to concentrate
on her younger sister especially when she is crying and that makes me to skip some
of the activities prescribed for her by the therapist”……………….Participant number 38. The age (21 years) and the time taken for caregiving (2 years) of this participant
are below the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (2 years) the participant offered caregiving to, is below the
mean age of the children.
Theme 2: Caregiver’s Occupation
Caregiver’s occupation can take some parts of their time, and thus can interfere with
the amount of attention they give to the children. Most women in this society are
full time housewives with no occupation.
“I used to sell groundnut and palm oil in my house. So, sometimes customers used to
distract my attention from her, but I have no option as the business too is important
to our life”……………….Participant number 5. The age (24 years) and the time taken for caregiving (2 years) of this participant
are below the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (2 years) the participant offered caregiving to, is below the
mean age of the children.
“I am a class room teacher in a primary school. Whenever I am having a class, I used
to leave her with a girl that is assisting me in our staff room and sometimes she
used to cry before I finish teaching my student”………………Participant number 34. The age (32 years) and the time taken for caregiving (5 years) of this participant
are above the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (5 years) the participant offered caregiving to, is above the
mean age of the children.
“I am working in secretariat and whenever I left for work, there is a girl that is
taking care of her. But I know she cannot do it as appropriately as I am doing”………………Participant number 31. The age (29 years) and the time taken for caregiving (4 years) of this participant
are above the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (4 years) the participant offered caregiving to, is above the
mean age of the children.
Theme 3: Lack of Financial Resources
Financial resources are adequately required during rehabilitation especially where
payments are made out pocket. However, in this community, most people live on under
a dollar per day.23
“Three months ago, the Physiotherapist asked us to buy some equipment that we will
be using for him at home (for home program). But up to now, we did not buy some of
them because of financial issues; but as soon as we get money we will buy the rest
of the equipment”………………..Participant number 19. The age (30 years) and the time taken for caregiving (3 years) of this participant
are above and slightly the mean age and mean time taken for caregiving of the participants
respectively. Similarly, the age of the child (2 years) the participant offered caregiving
to, is the same with the mean age of the children.
The Facilitators
Theme 1: Improvement in the Child’s Condition
What makes the caregivers to bring their children for rehabilitation is hope for help.
Therefore, when they observe that their children are getting proper help and may be
improving, they will be motivated to put more efforts.
“The time we started attending physiotherapy, my child cannot even sit but now he
can stand and even walk a few steps. So this motivates me to carry out the activities
that the Physiotherapists asked us to do for him at home”……………….Participant number 4. The age (27 years) and the time taken for caregiving (3 years) of this participant
are the same with the mean age and mean time taken for caregiving of the participants.
Similarly, the age of the child (3years) the participant offered caregiving to, is
the same with the mean age of the children.
“It is really encouraging as within the few weeks that my child started receiving
Physiotherapy treatment, he can sit for like 3-5 minutes unsupported. He could not
sit at the time we first came.”…………Participant number 13. The age (24 years) and the time taken for caregiving (1 year) of this participant
are below the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (1 year) the participant offered caregiving to, is below the
mean age of the children.
“It is really impressive that within 5 months of treatment my son can now
sit and I am confident that by God grace, one day he will walk and even run like
his age mates. That is why I never play with the activities that the therapist asked
me to do for him at home”……..Participant number 17. The age (40 years) and the time taken for caregiving (6 years) of this participant
are above the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (7 years) the participant offered caregiving to, is above the
mean age of the children.
Theme 2: Family Support
Help from family members can help reduce stress for the caregivers; and make them
recharge and prepare to look after their children.
“Whenever we are asked to use some equipments that will help in the improvement
for my child condition, my husband is trying his best to provide such equipments,
and whenever he is at home like weekend he used to help me with some home activities
like washing clothes. So this is giving me enough time to take care of my child”……………….Participant number 3. The age (31 years) and the time taken for caregiving (2 years) of this participant
are above and below the mean age and mean time taken for caregiving of the participants
respectively. Similarly, the age of the child (2 years) the participant offered caregiving
to, is below the mean age of the children.
“My first daughter is now 18 years old and the second one is 15 years old. Whenever
they are at home, they are the ones doing most of the home activities like cooking,
and sweeping. So what remains for me is just to take care of my child”……………….Participant number 17. The age (40 years) and the time taken for caregiving (6 years) of this participant
are above the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (7 years) the participant offered caregiving to, is above the
mean age of the children.
“Since the time the Doctor told us that our child is having this condition, my husband
employed a girl who is helping me with some work at home. So, this motivates me to
utilize my time for taking care of my child”………………..Participant number 39. The age (25 years) and the time taken for caregiving (3 years) of this participant
are below the mean age and slightly above the mean time taken for caregiving of the
participants respectively. Similarly, the age of the child (3 years) the participant
offered caregiving to, is the same with the mean age of the children.
Theme 3: Improvement in the Condition of other Children with CP
Seeing other children with CP who may even have more number deficits than one’s child,
may help caregivers to tighten their belts as per as the care for their children is
concerned.
“I have been seeing so many children that their condition is worse than that of my
child, but as they are attending clinic, their condition is improving. Thus, I am
confident that my child will get better. That is why I am taking my time to do the
activities that the therapist asked me to do for him.”………………Participant number 33. The age (27 years) and the time taken for caregiving (2 years) of this participant
are the same with the mean age, but below the mean time taken for caregiving of the
participants respectively. Similarly, the age of the child (2 years) the participant
offered caregiving to, is below the mean age of the children.
“My neighbor has a son that has experienced the same condition with my daughter. But
now, he is even attending school. So, that is why I have courage that, with time my
daughter too will get to that stage. So that is why I don’t joke with anything the
therapist says I should do for her”………………Participant number 13. The age (24 years) and the time taken for caregiving (1 year) of this participant
are below the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (1 year) the participant offered caregiving to, is below the
mean age of the children.
Theme 4: Encouragement from the Therapist Managing the Child
Encouragements from the therapists are needed in order to boost the morale of the
caregivers.
“Before, my perception was my son will never walk like the other children. But the
therapist managing him keep encouraging me that one day my child will even run, and
he kept citing many examples to me. So those words of his motivate me to concentrate
on my child more than anything”………………Participant number 35. The age (26 years) and the time taken for caregiving (3 year) of this participant
are below and slightly above the mean age and mean time taken for caregiving of the
participants respectively. Similarly, the age of the child (3 year) the participant
offered caregiving to, is the same with the mean age of the children.
Theme 5: Empathy
“The rest of my children can perform some of their activities of daily living
by themselves, but this child cannot do anything by himself. So this makes me to pity
him and pay more attention in taking care of him”……………Participant number 30. The age (24 years) and the time taken for caregiving (2 year) of this participant
are below the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (2 year) the participant offered caregiving to, is below the
mean age of the children.
Theme 6: Co-operation of the Child during the Home Program
The way the child cooperates during the time of rehabilitation by the caregiver at
home, can make an opportune time for the caregiver to devote their effort in the rehabilitation.
“Whenever I am doing the exercises for her at home, she will not be crying as some
of the children are doing. So this is encouraging me to do the exercises for her comfortably
without difficulties”……………Participant number 31. The age (29 years) and the time taken for caregiving (4 years) of this participant
are above the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (4 years) the participant offered caregiving to, is above the
mean age of the children.
“My child found most of the exercises enjoyable especially the rollator. So,
whenever I am doing the exercise for him he doesn’t even want me to stop. So this
is motivating me to do it well for him as he is enjoying it”…………….Participant number 36. The age (24 years) and the time taken for caregiving (2 year) of this participant
are below the mean age and mean time taken for caregiving of the participants. Similarly,
the age of the child (2 year) the participant offered caregiving to, is below the
mean age of the children.
“As my child is co-operating during the exercises- nothing like crying, I find it
encouraging; and enjoyable to do the exercises for her”………………Participant number 7. The age (27 years) and the time taken for caregiving (4 years) of this participant
are the same with the mean age and above the mean time taken for caregiving of the
participants respectively. Similarly, the age of the child (5 years) the participant
offered caregiving to, is above the mean age of the children.