Keywords
psychosocial intervention - cancer - children - mothers - quality of life
Introduction
Parents of children with serious illnesses go through a lot of worry and anxiety.[1] In parents of cancer patients, psychological distress is common during the child's
therapy, and once the course of treatment is complete, parents report higher levels
of anxiety, depression, and posttraumatic stress than the general population.[2]
[3]
[4]
[5] Few programs have, to date, particularly aimed to improve parent's well-being.[5]
The definition of quality of life (QoL) is how people view their place in the world
concerning their objectives, aspirations, standards, and worries, as well as the culture
and value systems in which they live.[6] A study done in Sri Lanka revealed that more than 50% of parents of children with
leukemia had a poor QoL.[7]
When parents' concern is substantial, referrals to qualified psychosocial therapists
outside a pediatric hospital setting are typical forms of help. Delivering interventions
at this time is challenging, despite parental support for seeking assistance when
their kid first develops cancer.[8] Positive psychological resources are the focus of interventions with greater potential.[9]
[10] An important concept called resilience outlines how someone uses resources to maintain
their physical or psychological health in the face of adversity.[11] Parental self-perceptions of resilience have been linked to clinically significant
outcomes, such as psychological discomfort, health-related behaviors, and comfort
in sharing values with the medical staff.[12] Promoting one's resources for resiliency, such as stress management techniques,
goal-setting strategies, problem-solving techniques, cognitive restructuring techniques,
and meaning-making techniques, may help improve one's QoL and health-related behaviors
as well as reduce negative mental health outcomes.[13]
[14]
[15]
National organizations advise that psychosocial counseling be given to families at
diagnosis as they are aware that a diagnosis of children's cancer creates distress.[16] Sadly, there is not much research that has been published on treatments that take
place after a diagnosis and the realization that families' psychosocial needs are
not being sufficiently met.[17] The nature of parental distress at diagnosis and the research supporting psychosocial
therapies for relatives of newly diagnosed cancer patients are commonly seen.[18]
For children with cancer, parents are the primary source of social and emotional support,
and they are also in charge of how successfully patients manage their illness. The
degree of difficulty parents suffer after learning that their child has cancer significantly
influences the child's psychological adjustment. The patient's QoL and the quality
of care can both be impacted by the parents' decreasing health.[6] To guarantee treatment adherence and care continuity, parental engagement is crucial
to the best management of cancer patients. Parents who are consistently exhausted
and who have a lower QoL may delay providing the child with the necessary care, which
may worsen the child's health. There are growing psychological therapies to lessen
discomfort and enhance adjustment in parent child care (PCCs).[1] As a result, the parent's QoL must be taken into account for the benefit of both
the patient's health and the parents themselves as unpaid primary caregivers.[6]
Materials and Methods
Permission for the study was obtained from concerned authorities. Ethical clearance
was obtained from the ethics committee (ethical clearance no. FMIEC/CCM/676/2021).
The study was registered for Clinical Trials Registry-India (CTRI) (CTRI/2020/09/027774
on September 11, 2020). The subjects gave their consent after being fully informed.
The survey was briefly introduced, the survey's voluntary and confidential nature
was described, questions were answered, and surveys were distributed. The responders'
anonymity and confidentiality were respected. A special code was supplied to each
response. All of the data were password protected and only the researcher and other
research employees involved in the project had access to them. Demographic pro forma,
WHOQOL-BREF was collected from the mothers of children with cancer for 12 months.
The questionnaires were finished by participants in ∼15 minutes. The aggregate form
of the combined data was reported. Data from the survey were coded before being entered
into an electronic database for analysis. According to the objectives, the obtained
data were recorded and then subjected to statistical analysis using descriptive statistics
and inferential statistics. The study adhered to protocols that met the responsible
committee on human experimentation's ethical criteria, as well as the 2017 Indian
Council of Medical Research guidelines and the Helsinki recommendations. During data
entry, missing data tools were discarded.
The quasi-intervention study design was undertaken. The sample consists of 60 mothers
of children with cancer of all types. The purposive sampling technique was used to
select the mothers who were assigned randomly to the intervention and control groups.
Data were collected from the parent hospital. The sample size was determined using
data from a previously published study[19] using the formula:
Thus, the obtained n = 86 + 10% attrition
= 96 (48 + 48)
Since this was a feasibility study, a sample of 30 + 30 was taken ([Fig. 1]).
Fig. 1 Flowchart of subject recruitment for feasibility study.
Inclusion criteria for sample selection included all mothers of children diagnosed
with cancer who were taking care of the child for at least the last 3 months, were
admitted during the remission/induction phase of treatment, and were availing of inpatient,
outpatient, and day-care services of the selected hospital. Mothers of children diagnosed
with cancer who are intellectually and mentally challenged and who were undergoing
palliative care were excluded.
Tools
There were two instruments in the survey questionnaire. A demographic pro forma was
the first tool, and a WHOQOL-BREF scale with 26 items was the second. Tool 1 had 18
demographic items which included age, sex, proximity to the hospital, family history
of cancer, etc. Tool 2 WHOQOL-BREF scale with 26 items had no correct or wrong answer
for QoL, a score of 1 was given for not at all and a score of 5 for extremely for
21 positively worded items, and a score of 5 was given for not at all and a score
of 1 for extremely for 3 negatively worded items. Two items among the 26 items depicted
overall QoL and were not included in domains. Grading of QoL was categorized into
four domains namely physical, psychological, social, and environmental domains. By
sending the tool to 11 experts, content validity was determined which included 2 pediatric
oncologists, 2 psychologists, and 7 pediatric nursing experts. All validators accepted
the tool and the obtained CVI was 100%. However, there were a few modifications in
demographic variables which were modified as per suggestions. The translations of
the tools from English to Kannada, Hindi, and back again were followed by further
discussion with subject-matter experts. Language reliability was checked using Cronbach's
α and the internal consistency coefficients were 0.841 and 0.824, respectively. The
tool was pretested in 15 mothers of children with cancer. There were no feasibility
issues in administering the tool. Hence, we processed for the pilot study.
Data Collection Method
The study was undertaken in two phases. Phase I involved qualitative data collection
on the challenges of mothers of children with cancer using in-depth interview which
led to the development of the psychosocial intervention. Phase II involved determining
the effectiveness of the developed psychosocial intervention on the QoL of mothers
of children with cancer. This article is on Phase II of the study; hence, the data
collection involved in assessing the QoL among mothers of children with cancer was
assessed using a WHOQOL-BREF scale. Mothers of children with cancer were randomly
assigned to the intervention and control groups, and QoL was assessed using a WHOQOL-BREF
scale. This followed the administration of psychosocial intervention to the mothers
of the intervention group, whereas the mothers of the control group received routine
hospital care. The psychosocial intervention was given for a duration of 2 hours as
per the needs of the mothers in the hospital setting. Data on QoL for the control
group were collected first and on completion, data from the intervention group were
collected to prohibit the contamination. The psychosocial intervention was developed
from Phase I of the study based on an in-depth interview which had four areas namely
child care, psychological, financial, and spiritual areas. Psychosocial intervention
included relaxation techniques, spiritual help, self-help/referral groups, referral
services for financial concerns, and information on cancer child care which was provided
using face-to-face, group, and individual sessions and PowerPoint presentations. The
effectiveness of the psychosocial intervention on QoL among mothers of children with
cancer was assessed by comparing preintervention QoL scores with postintervention
QoL scores assessed on the 8th day, 1 month, and 3 months, and an informational pamphlet
on cancer and its management was given to the mothers of both the intervention and
control groups. The mothers of children in the control group were given psychosocial
intervention after the QoL assessment at 3 months to avail the benefit of the psychosocial
intervention given to the intervention group. Collected data were subjected to analysis
using SPSS 23.
Results
Baseline Characteristics of Mothers of Children with Cancer
The majority of mothers were older than 30 years with a mean ± standard deviation
(SD) of 32.96 ± 6.37 and 33.74 ± 6.51 in the intervention and control groups, and
almost half of them had an education level of high school, belonged to a joint family,
and had two children in both intervention and control groups, respectively. The proximity
of the health care among the majority of mothers was reported to be less than 50 km
with mean ± SD of 86.13 ± 85.67 and 98.71 ± 92.84 km, with treatment cost less than
Rs. 30,000 with mean ± SD of 29,100 ± 21,660.95 and 30,741.94 ± 24,516.62 in intervention
and control groups. Family monthly income was less than Rs. 29,000 with mean ± SD
of 18,200 ± 9,788.80 and 17,000 ± 9,465.73 and belonged to upper lower class, respectively,
in both intervention and control groups ([Table 1]).
Table 1
Baseline characteristics of mothers of children with cancer in terms of frequency
and percentage: n = 30 + 30
|
Variables
|
Intervention
|
Control
|
Chi-square
|
p-Value
|
|
Frequency
|
%
|
Mean ± SD
|
Frequency
|
%
|
Mean ± SD
|
|
Age (y)
|
|
< 30
|
13
|
43.3
|
32.96 ± 6.37
|
11
|
36.7
|
33.74 ± 6.51
|
0.278
|
0.598
|
|
> 30
|
17
|
56.7
|
19
|
63.3
|
|
Religion
|
|
Hindu
|
19
|
63.3
|
|
19
|
63.3
|
|
–
|
0.845
|
|
Christian
|
1
|
3.3
|
|
2
|
6.7
|
|
Muslim
|
10
|
33.3
|
|
9
|
30.0
|
|
Occupation
|
|
Unemployed
|
26
|
86.7
|
|
23
|
76.7
|
|
1.002
|
0.317
|
|
Skilled
|
4
|
13.3
|
|
7
|
23.3
|
|
Educational qualification
|
|
Middle school
|
5
|
16.7
|
|
4
|
13.3
|
|
–
|
0.845
|
|
High school
|
13
|
43.3
|
|
15
|
50.0
|
|
Intermediate/diploma
|
3
|
10.0
|
|
5
|
16.7
|
|
Graduate
|
5
|
16.7
|
|
3
|
10.0
|
|
Professional degree
|
4
|
13.3
|
|
3
|
10.0
|
|
Family type
|
|
Nuclear family
|
7
|
23.3
|
|
9
|
30.0
|
|
1.393
|
0.498
|
|
Joint family
|
13
|
43.3
|
|
15
|
50.0
|
|
Extended family
|
10
|
33.3
|
|
6
|
20.0
|
|
Place of residence
|
|
Rural
|
16
|
53.3
|
|
14
|
46.7
|
|
0.267
|
0.606
|
|
Urban
|
14
|
46.7
|
|
16
|
53.3
|
|
Proximity of the health care setting (km)
|
|
< 50
|
12
|
40.0
|
|
10
|
33.3
|
|
0.404
|
0.817
|
|
51–100
|
10
|
33.3
|
86.13 ± 85.67
|
10
|
33.3
|
98.71 ± 92.84
|
|
> 100
|
8
|
26.7
|
|
10
|
33.3
|
|
|
Number of children
|
|
One
|
9
|
30.0
|
|
8
|
26.7
|
|
0.802
|
0.670
|
|
Two
|
15
|
50.0
|
|
13
|
43.3
|
|
Three
|
6
|
20.0
|
|
9
|
30.0
|
|
Treatment expenditure (rupees per mo)
|
|
≤30,000
|
21
|
70.0
|
|
20
|
66.7
|
|
0.077
|
0.781
|
|
> 30,000
|
9
|
30.0
|
29,100 ± 21,660.95
|
10
|
33.3
|
30,741.94 ± 24,516.62
|
|
Information on cancer and its management
|
|
Yes
|
14
|
46.7
|
|
16
|
53.3
|
|
0.267
|
0.606
|
|
No
|
16
|
53.3
|
|
14
|
46.7
|
|
Source of information on cancer
|
|
Media
|
6
|
20.0
|
|
6
|
20.0
|
|
0.356
|
0.837
|
|
Health personal
|
14
|
46.7
|
|
16
|
53.3
|
|
Never received any information
|
10
|
33.3
|
|
8
|
26.7
|
|
Challenges experienced due to the child cancer diagnosis
|
|
Yes
|
27
|
90.0
|
|
25
|
83.3
|
|
0.577
|
0.448
|
|
No
|
3
|
10.0
|
|
5
|
16.7
|
|
Family members diagnosed with cancer
|
|
Yes
|
3
|
10.0
|
|
2
|
6.7
|
|
0.218
|
0.640
|
|
No
|
27
|
90.0
|
|
28
|
93.3
|
|
Monthly income (according to Kuppuswamy scale)
|
|
< 10,000
|
2
|
6.7
|
|
1
|
3.3
|
|
–
|
0.795
|
|
10,000–29,000
|
22
|
73.3
|
18,200 ± 9,788.80
|
25
|
83.3
|
17,000 ± 9,465.73
|
|
29,000–49,000
|
5
|
16.7
|
|
3
|
10.0
|
|
|
> 50,000
|
1
|
3.3
|
|
1
|
3.3
|
|
|
Financial status
|
|
(According to Kuppuswamy scale)
|
|
|
|
|
|
|
–
|
0.412
|
|
Upper middle class
|
5
|
16.7
|
|
3
|
10.0
|
|
Lower middle class
|
9
|
30.0
|
|
6
|
20.0
|
|
Upper lower class
|
16
|
53.3
|
|
21
|
70.0
|
Abbreviation: SD, standard deviation.
Baseline Characteristics of Children with Cancer
The majority of children with cancer were younger than 10 years with mean ± SD of
5.92 ± 4.71 and 7.51 ± 5.44 in the intervention and control groups, and more than
50% of children were male and diagnosed with acute lymphoblastic leukemia (ALL), respectively,
in either of the groups. Most, more than 40% in the intervention and 50% in the control
were in stage II and more than 90% received chemotherapy only in both the intervention
and control groups. A majority (90%) of children also reported the time since diagnosis
was made was as younger than 2 years with mean ± SD of 0.61 ± 0.49 and 0.71 ± 0.65
in the intervention and control groups with no aggressive spread of disease in either
of the group ([Table 2]).
Table 2
Baseline characteristics of children with cancer in terms of frequency and percentage:
n = 30 + 30
|
Variables
|
Intervention
|
Control
|
Chi-square
|
p-Value
|
|
Frequency
|
%
|
Mean ± SD
|
Frequency
|
%
|
Mean ± SD
|
|
Age (y)
|
|
≤10
|
23
|
76.7
|
5.92 ± 4.71
|
19
|
63.3
|
7.51 ± 5.44
|
–
|
0.71
|
|
≥11
|
7
|
23.3
|
11
|
36.7
|
|
Diagnosis
|
|
ALL
|
17
|
56.7
|
|
19
|
63.3
|
|
|
0.94
|
|
AML
|
3
|
10.0
|
2
|
6.7
|
|
Neuroblastoma
|
3
|
10.0
|
2
|
6.7
|
|
Hodgkin's
|
2
|
6.7
|
3
|
10.0
|
|
Ewing's
|
3
|
10.0
|
3
|
10.0
|
|
LCH
|
1
|
3.3
|
1
|
3.3
|
|
CML
|
1
|
3.3
|
0
|
0
|
|
Gender
|
|
Male
|
16
|
53.3
|
|
17
|
56.7
|
|
0.067
|
0.795
|
|
Female
|
14
|
46.7
|
|
13
|
43.3
|
|
Stage of disease
|
|
Stage I
|
9
|
30.0
|
|
7
|
23.3
|
|
|
0.719
|
|
Stage II
|
12
|
40.0
|
|
15
|
50.0
|
|
Stage III
|
5
|
16.7
|
|
6
|
20.0
|
|
Stage IV
|
4
|
13.3
|
|
2
|
6.7
|
|
Time duration from the time of diagnosis (y)
|
|
0–2
|
29
|
96.7
|
0.61 ± 0.49
|
27
|
90.0
|
0.71 ± 0.65
|
1.071
|
0.301
|
|
> 2
|
1
|
3.3
|
|
3
|
10.0
|
|
|
Modality of treatment
|
|
Chemotherapy
|
27
|
90.0
|
|
29
|
96.7
|
|
1.071
|
0.301
|
|
Combined
|
3
|
10.0
|
|
1
|
3.3
|
|
School dropout after the child's diagnosis
|
|
Yes
|
5
|
16.7
|
|
6
|
20.0
|
|
0.275
|
0.871
|
|
No
|
7
|
23.3
|
|
8
|
26.7
|
|
NA
|
18
|
60.0
|
|
16
|
53.3
|
|
Aggressive spread
|
|
Yes
|
6
|
20.0
|
|
3
|
10.0
|
|
1.176
|
0.278
|
|
No
|
24
|
80.0
|
|
27
|
90.0
|
Abbreviations: ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia; CML,
chronic myeloid leukemia; LCH, Langerhans cell histiocytosis; NA, not applicable;
SD, standard deviation.
Effectiveness of Psychosocial Intervention on Quality of Life of Mothers of Children
Diagnosed with Cancer
Effectiveness of Psychosocial Intervention on Quality of Life of Mothers of Children
Diagnosed with Cancer
Domain-wise within-Group Two-Factor Repeated Measures ANOVA on the Effectiveness of
Psychosocial Intervention on Quality of Life among Mothers of Children with Cancer
Domain-wise within-group two-factor ANOVA was done which shows the overall QoL scores
over significantly high over the period in the intervention group when compared with
the control group with the calculated value (p = 0.001**, p < 0.05). Hence, the psychosocial intervention was effective in improving QoL scores
in psychological health domain (p = 0.02*, p < 0.05), social relationship domain (p = 0.04*, p < 0.05), and environmental health domain (p = 0.001**, p < 0.05) ([Table 3]).
Table 3
Domain-wise descriptive of within-group and between-group two-factor repeated measures
ANOVA on effectiveness of psychosocial intervention on quality of life among mothers
of children with cancer: n = 30 + 30
|
Parameter
|
Group
|
Observation
|
F
-value
|
df
|
p
-Value
|
Partial eta square
|
|
Before
|
8th d
|
1 mo
|
3 mo
|
|
Physical health domain
|
Intervention
|
22.43 ± 3.90
|
23.67 ± 1.40
|
23.33 ± 1.61
|
23.33 ± 1.49
|
1.530
|
3 and 174
|
0.208
|
0.03
|
|
Control
|
21.37 ± 3.35
|
21.37 ± 3.35
|
21.37 ± 3.35
|
21.37 ± 3.35
|
7.943
|
1 and 58
|
0.208
|
0.12
|
|
Psychological health domain
|
Intervention
|
18.03 ± 2.68
|
22.10 ± 1.32
|
21.80 ± 1.54
|
22.10 ± 1.61
|
35.227
|
3 and 174
|
0.02[a]
|
0.39
|
|
Control
|
18.33 ± 2.80
|
18.33 ± 2.80
|
18.33 ± 2.80
|
18.33 ± 2.80
|
24.488
|
1 and 58
|
0.02[a]
|
0.30
|
|
Social relationship domain
|
Intervention
|
9.37 ± 1.90
|
11.77 ± 1.04
|
11.77 ± 1.07
|
11.80 ± 0.96
|
24.100
|
3 and 174
|
0.04[a]
|
0.29
|
|
Control
|
9.33 ± 2.80
|
9.33 ± 2.80
|
9.33 ± 2.80
|
9.33 ± 2.80
|
12.480
|
1 and 58
|
0.04[a]
|
0.18
|
|
Environmental health domain
|
Intervention
|
24.37 ± 4.33
|
30.90 ± 1.97
|
31.47 ± 1.50
|
30.53 ± 1.74
|
46.156
|
3 and 174
|
0.001[b]
|
0.44
|
|
Control
|
25.17 ± 3.72
|
25.17 ± 3.72
|
25.17 ± 3.72
|
25.17 ± 3.72
|
33.574
|
1 and 58
|
0.001[b]
|
0.37
|
|
Total QoL
|
Intervention
|
74.20 ± 8.01
|
88.43 ± 2.79
|
88.37 ± 3.17
|
87.77 ± 2.80
|
65.111
|
3 and 174
|
0.001[b]
|
0.53
|
|
Control
|
74.20 ± 9.47
|
74.20 ± 9.47
|
74.20 ± 9.47
|
74.20 ± 9.47
|
34.663
|
1 and 58
|
0.001[b]
|
0.37
|
|
Two-factor repeated measures ANOVA
|
|
Parameter
|
Source
|
F
|
df
|
p
-Value
|
Partial eta squared
|
|
Physical health domain
|
Within group
|
1.530
|
3 and 174
|
0.208
|
0.026
|
|
Between group
|
7.943
|
1 and 58
|
0.208
|
0.120
|
|
Psychological health domain
|
Within group
|
35.227
|
3 and 174
|
0.001[b]
|
0.378
|
|
Between group
|
24.488
|
1 and 58
|
0.001[b]
|
0.297
|
|
Social relationship domain
|
Within group
|
24.100
|
3 and 174
|
0.002[b]
|
0.294
|
|
Between group
|
12.480
|
1 and 58
|
0.002[b]
|
0.177
|
|
Environmental health domain
|
Within group
|
46.156
|
3 and 174
|
0.001[b]
|
0.443
|
|
Between group
|
33.574
|
1 and 58
|
0.001[b]
|
0.367
|
|
Total QoL
|
Within group
|
65.111
|
3 and 174
|
0.002[b]
|
0.529
|
|
Between group
|
34.663
|
1 and 58
|
0.002[b]
|
0.374
|
Abbreviations: ANOVA, analysis of variance; QoL, quality of life.
a
p < 0.05—significant.
b Highly significant.
Post Hoc Analysis of the Effectiveness of Psychosocial Intervention on Quality of
Life among Mothers of Children with Cancer
Post hoc analysis using the Bonferroni's test which gives us within-group significant
changes in QoL as measured by WHOQOL-BREF which found that psychosocial intervention
among mothers of children with cancer was effective in the psychological health domain,
social relationship domain, and environmental health domain with a calculated value
(p = 0.02*, p = 0.03*, p = 0.001**, p < 0.05) assessed before intervention and 8th day of postintervention, before intervention
and 1 month of postintervention, and before intervention and 3 months of postintervention,
respectively ([Table 4]).
Table 4
Post hoc analysis effectiveness of psychosocial intervention on quality of life among
mothers of children with cancer: n = 30 + 30
|
Parameter
|
Observation
|
Group
|
Mean difference
|
Standard deviation of difference
|
Change (%)
|
p-Value
|
Bonferroni
p-value
|
|
Physical health domain
|
Before–8th d
|
Intervention
|
−1.23
|
4.38
|
5.50
|
0.402
|
0.129
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–1 mo
|
Intervention
|
−0.90
|
3.84
|
4.01
|
0.630
|
0.205
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–3 mo
|
Intervention
|
−0.90
|
4.31
|
4.01
|
0.786
|
0.257
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Psychological health domain
|
Before–8th d
|
Intervention
|
−4.07
|
2.95
|
22.55
|
0.000
|
0.000a
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–1 mo
|
Intervention
|
−3.77
|
3.17
|
20.89
|
0.000
|
0.02b
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–3 mo
|
Intervention
|
−4.07
|
3.48
|
22.55
|
0.000
|
0.02b
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Social relationship domain
|
Before–8th d
|
Intervention
|
−2.40
|
2.18
|
25.62
|
0.000
|
0.000a
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–1 mo
|
Intervention
|
−2.40
|
2.21
|
25.62
|
0.000
|
0.03b
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–3 mo
|
Intervention
|
−2.43
|
2.22
|
25.98
|
0.000
|
0.03b
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Environmental health domain
|
Before–8th d
|
Intervention
|
−6.53
|
4.83
|
26.81
|
0.000
|
0.001a
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–1 mo
|
Intervention
|
−7.10
|
4.85
|
29.14
|
0.000
|
0.001a
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–3 mo
|
Intervention
|
−6.17
|
4.84
|
25.31
|
0.000
|
0.001a
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Total QoL
|
Before–8th d
|
Intervention
|
−14.23
|
8.61
|
19.18
|
0.000
|
0.001a
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–1 mo
|
Intervention
|
−14.17
|
9.20
|
19.09
|
0.000
|
0.02b
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
|
Before–3 mo
|
Intervention
|
−13.57
|
8.72
|
18.28
|
0.000
|
0.02b
|
|
Control
|
0.00
|
0.00
|
0.00
|
1.000
|
Abbreviation: QoL, quality of life.
Two-Factor Repeated Measures ANOVA on the Effectiveness of Psychosocial Intervention
on Overall Quality of Life (Q1 and Q2) among Mothers of Children with Cancer
Overall QoL as measured by WHOQOL-BREF showed that psychosocial intervention among
mothers of children with cancer was effective in Q1 and Q2 with a calculated value
(p = 0.001**, p < 0.05) assessed before intervention and 8th day of postintervention, before intervention
and 1 month of postintervention, and before intervention and 3 months of postintervention,
respectively.
Post Hoc Analysis on the Effectiveness of Psychosocial Intervention on Overall Quality
of Life (Q1 and Q2) among Mothers of Children with Cancer
Post hoc analysis using the Bonferroni's test which gives us within the group and
between group significant changes in QoL as measured by WHOQOL-BREF for Q1 and Q2
areas found that psychosocial intervention among mothers of children with cancer was
effective in Q1 and Q2 with a calculated value (p = 0.03*, p < 0.05) assessed before intervention and 8th day of postintervention, before intervention
and 1 month of postintervention, and before intervention and 3 months of postintervention,
respectively.
Association between the Quality of Life among Mothers of Children with Cancer and
Selected Baseline Variables
Multivariate ANOVA was used to find an association between QoL of mothers of children
with cancer and selected baseline variables which revealed that there was a significant
association found between the physical health domain and information on cancer (p = 0.01*), psychological health domain and financial status (p = 0.03*), social relationship domain and cost of treatment (p = 0.04*), Q1 and place of residence (p = 0.004**), Q2 and place of residence (p = 0.02*), and Q2 and financial status (p = 0.03*).
Association between the Quality of Life among Mothers of Children with Cancer and
Selected Baseline Variables of the Child
Multivariate ANOVA was used to find an association between the QoL of mothers of children
with cancer and selected child baseline variables. The table reveals that there was
a significant association found between the physical health domain and diagnosis of
a child (p = 0.04*), psychological health domain and diagnosis of a child (p = 0.04*), social relationship domain and school dropout (p = 0.01*), and total QoL and school dropout (p = 0.04*).
Discussion
Our study found that the majority of children with cancer were younger than 10 years,
male, and diagnosed with ALL. The majority of children also reported the time since
diagnosis was made less than 2 years with no aggressive spread of disease in both
the intervention and control groups. The majority of mothers were older than 30 years
with their education level being high school, belonging to a joint family, and having
two children in both groups. The proximity of the health care among a majority of
mothers was reported to be less than 50 km, with treatment cost less than Rs. 30,000,
with family income less than Rs. 29,000 and belonged to upper lower class, respectively,
in both groups which were similar to findings by Rosenberg et al found that the participants
in all three groups were married mothers with a median age of 35 to 38 (31–44) years
and at least some college degree. Leukemia or lymphoma was the most common diagnosis
in all three groups of children with cancer, who had a median (interquartile range)
age of 5 to 8 (3–14) years. Slightly more than half of the children were male.[12]
[20]
[21]
Our findings were also supported by study findings of Robinson et al who reported
that child's age was 12.02 ± 2.51, mother's age was 38.59 ± 7.31, mother's education
was 13.32 ± 2.22, and father's education was 13.27 ± 3.22 and Sahler et al who found
that the mother's age was (mean ± SD) 36.3 ± 8.1 years. The child's age was (mean ± SD)
8.2 ± 5.7 years; 50.6% of children were male with 50% diagnosed with leukemia,13%
with solid tumors, and 10.8% with brain tumors.[1]
[9] Study findings of Rosenberg et al and Rosenberg et al revealed that participant
mean age was 16.2 ± 2.8 years, 58% female, duration of disease 2.3 ± 3.8 years, and
40% were diagnosed with acute leukemia; 21% of parent's age was less than 38 years,
86% were married or living with a partner of which 31% had high school education,
and 14% had an annual income of <$25,000.[2]
[20] Results indicated that the length of a child's illness was connected to the eventual
level of parental distress; parents of children with cancer who had cancer for less
than 6 months or more than 18 months had less success adjusting to their child's disease.
Predictive grieving was inversely connected to aberrant grief responses, and prior
loss was linked to worse outcomes.[3]
In the present study, a significant difference was noticed in the impact of psychosocial
intervention on the overall QoL scores significantly high over the period in the intervention
group when compared with the control group with a calculated value (p = 0.001**, p < 0.05). Psychosocial intervention was effective in improving QoL scores in psychological
health domain (p = 0.02*, p < 0.05), social relationship domain (p = 0.04*, p < 0.05), and environmental health domain (p = 0.001**, p < 0.05). Similar findings were reported with high psychological distress (odds ratio
[OR]: 3.71, 95% confidence interval [CI]: 1.17, 11.72), frequent sleep issues (OR:
5.19, 95% CI: 1.74, 15.45), and lower health satisfaction all associated with parents
who had “low resilience resources” (OR: 5.71, 95% CI: 2.05, 15.92). These parents
also stated that they found it more difficult to communicate their wishes and concerns
to their medical staff (OR: 3.08, 95% CI: 1.12, 8.49 and OR: 4.00, 95% CI: 1.43, 11.18,
respectively).[12] This was also supported by a systematic review by Rosenberg et al reported that
high rates of anxiety, depression, protracted grieving, poor psychological well-being,
poor physical health, and low QoL are experienced by parents of children who pass
away from cancer. Additionally, parents were said to be at higher risk for poor life
quality and low psychological well-being (risk ratio [RR]: 1.4; 95% CI: 1.2–1.7) (RR
1.3, 95% CI: 1.1–1.5) and findings of Rosenberg et al which reported that both the
patients' and the parents' high regard for the Promoting Resilience in Stress Management
(PRISM) intervention. Qualitative feedback advised that the PRISM or comparable interventions
be created to promote coping and adjustment. Improved benefit finding and hope were
linked to PRISM, with moderate to large impact sizes: hope: +3.6 points; 95% CI: 0.7,
6.4; d = 0.6; p = 0.01.18 and benefit finding: +3.1 points; 95% CI: 0.0, 6.2; d = 0.4; p = 0.05.[3]
[20]
[21] Kearney et al revealed that the QoL for parents, aspects of their mental and physical
health, how their family functions, and marital difficulties are all negatively impacted
by parental distress. Long-term psychosocial outcomes are predicted by parental psychosocial
functioning 6 months after diagnosis.[5] Sahler et al's study found that only the (PSST) Problem solving skills training
intervention group showed a substantial improvement in problem solving at time 2 (T2),
which was to be expected since these skills were particularly taught in PSST. Additionally,
the PSST group at T2 had much better problem-solving abilities. Interestingly, mothers
in the PSST group had improved even after the treatment ended (T2), resulting in significant
between-group differences at the 3-month follow-up (T3).[9] On the contrary, an randomized controlled trial conducted by Stehl et al found that
based on independent t-tests, neither main nor secondary caregivers' (STAI) State-Trait Anxiety Inventory
scores at T1 showed any differences between the groups. However, on average, for both
primary and secondary carers, both groups demonstrated a substantial decline in state
anxiety from T1 to T2 (all p-values 0.05). A nonsignificant effect was also revealed by the combined analysis
using a linear mixed model (p=0.22; the difference between (SCCIP-ND) Surviving Cancer Competently Intervention
Program-Newly Diagnosed and (TAU) standard psychosocial care/treatment as usual was
5.30 points, 95% CI: 3.34–14.17).[8]
In the present study with multivariate ANOVA, we found an association between QoL
of mothers of children with cancer with physical health domain and information on
cancer (p = 0.01), psychological health domain and financial status (p = 0.03), social relationship domain and cost of treatment (p = 0.04), Q1 and place of residence (p = 0.004**) and Q2 and place of residence (p = 0.02), and Q2 and financial status (p = 0.03). However, study by Kim and Knight and a systematic review by Rosenberg et
al found that only among spouses who provided care, did openness to experience have
a direct positive correlation with life satisfaction (B = 0.50, standard error [SE] = 0.22, 95% CI = 0.06, 0.93 and among parents who provide
care, emotion control was directly correlated with life satisfaction (B = 0.14, SE = 0.07, 95% CI = 0.002, 0.27). They also discovered that the severity
of the parents' posttraumatic stress disorder was positively connected with avoiding
disease- and treatment-related stimuli around the time of their child's diagnosis
(r = 0.52, p = 0.001) and early in therapy (r = 0.36–0.47, p = 0.05).[3]
[15] Robinson et al reported that Pearson's correlations showed that mothers' distress
(r = 14.43, p = 0.001) and mothers' socioeconomic factors (r = 14.26, p = 0.05), such as lower household income, lesser education, and unemployment, as well
a pediatric disease factors such as relapse and severity of treatment, as well as
a child's poor physical symptoms or functional impairment, were significantly correlated
with fathers' and mothers' reports of internalizing symptoms in children. According
to several studies, parental caregiving stress and load as well as poorer adjustment
are all related to earlier traumatic life events and parent mental therapy.[1] On the contrary, no demographic factors such as caregiver sex, age, income, education,
religiousness, child sex, age, cancer kind, or time since the end of therapy/death
were linked to resilience resources.[12]
Our enrollment and the successful assessment completion rate were 79% for mothers
of children with cancer in the intervention group and 81% for mothers of children
with cancer in the control group. This may be due to the prolonged period of 3 months
to complete the follow-up. However, our results reflected the difficulty in retaining
the participants which is one of the limitations of the study. Another limitation
is the restriction of mothers only in the selected hospitals. Wider coverage of mothers
could have added varied information which can be undertaken in the main study. Three
follow-ups were done on the 8th day, 1 month, and 3 months. A longer duration of follow-up
of 6 to 12 months could have given the trend pattern of QoL which is our third limitation.
However, the benefit of longer duration also has to be balanced with the issues with
the retention of participants. Self-reporting questionnaire was used to assess the
QoL which carries the risk of participants over- and underreporting which is another
limitation of our study. Despite the above limitations, we are confident with our
findings due to (1) enrollment of an equal number of participants in the intervention
and control groups. (2) On average 80% of mothers in both groups completed the second
and third follow-ups. Thus, data obtained from either group reflect stability confirming
the findings of the study. Our findings showed psychosocial intervention was effective
on QoL of mothers of children with cancer in psychological, environmental, and social
domains however did not have much impact on the physical domain in 3 months. However,
our study supports a long-term follow-up of 6 months to identify the QoL over a while.
Conclusion
In all QoL subdimensions, it was determined that the mothers of cancer patients had
a mediocre to poor QoL. As a result, it is advised that nurses provide comprehensive
nursing care for both families and children. A family support group should be created
by health care facilities exclusively for family caregivers so that they can help
one another and exchange information about how they have treated cancer.
