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Develop a scholarly paper that addresses the following criteria:
1. Identify an area of clinical interest.
2. Locate a minimum of one peer-reviewed journal article (no older than 5 years) related to your clinical topic of interest. Do not
use a meta-analysis or systematic review.
3. Critique the journal article, fully answering the questions in the table below.

Downes, N., Lichtle, J., Lamore, K., Oreve, M.J., & Cappe, E. (2021). Couples’ Experiences of parenting a
child after an autism diagnosis: A qualitative study. Journal of Autism and Developmental
Disorders, 5, 2697-27110.
.https://pubmed.ncbi.nlm.nih.gov/33067696/Name: __________________________________
Date: ___________________
NUR 3050 – Nursing Research Methodologies and Evidence-Based Practice
Alternative IPE Assignment # 4 – Qualitative Research Critique
Critique Questions/Content
Research Problems and
population of
What is the research problem?
Does the problem build a persuasive argument
for the new study?
Is the problem statement easy to locate?
What is the population of interest?
What are the research questions?
Research Questions
Research Tradition
Ethical Aspects of a
Data Collection
Was the research tradition for the study
If none was identified, can one be inferred? Are
to safeguard
the data
and analytic
approach congruent with the research tradition?
was confidentiality
Was there
evidence of reflexivity
in the design?
Were vulnerable groups involved in research?
Given the research question and characteristics
of study participants, did the researcher use the
best method of capturing study phenomena
(self-reports, interviews, groups or
If self-report methods, did the researcher make
good decisions about the specific method used
to solicit information (focus group interviews,
individual interviews)
Data Collection
Data Analysis
Clinical Practice
Were interviews tape recorded, annotated, and
Identify the type of analyses undertaken to
answer a research question. Were appropriate
methods used and/or qualitative software for
data assessment?
Were the findings effectively summarized, with
good use of experts?
Do the themes adequately capture the meaning
of the data? Does it appear that the researcher
satisfactorily conceptualized the themes or
patterns in the data?
Did the analysis yield an insightful,
provocative, and meaningful picture of the
phenomenon under investigation?
Did the researchers discuss the study’s
implications for clinical practice or future
research and if so, were the implications
grounded in the study evidence, and in
evidence from earlier research?
Summarize the overall quality of the critiqued research study according to the benchmark quality sources cited.
Name: __________________________________
Date: ___________________
NUR 3050 – Nursing Research Methodologies and Evidence-Based Practice
Alternative IPE Assignment 4 – Quantitative Research Critique
Research Problems
Research Questions
and Hypotheses
Ethical Aspects of a
Research Design
Critique Questions/Content
What is the research problem?
Does the problem build a persuasive argument
for the new study?
Is the problem statement easy to locate?
What are the research questions and
Does the hypothesis state a predicted
relationship between two or more variables?
Was the study approved and monitored by an
Institutional Review Board, Research Ethics
Board or similar committee?
Were appropriate informed consent procedures
used with all participants?
Was the design experimental, quasiexperimental, or non-experimental?
Was the study longitudinal or cross-sectional?
What are the threats to the study internal
What type of sampling design was used?
Are possible sample biases or weaknesses
Data Collection
Statistical Analysis
Clinical Practice
What methods of data collection were utilized
(Self-reports, Scales, Observation, and Rating
Scales)? If self-report methods were used, did
the researchers make good decisions about
specific methods (in-person interviews, mailed
questionnaires, etc.)?
If observational methods were used, did the
report adequately describe what the
observations entailed?
Identify the type of analyses undertaken to
address each research question or test each
Were appropriate statistical methods used,
given the level of measurement of the
variables, number of groups being compared,
and so on?
How are important results presented?
Do the authors make causal or correlational
inferences? Are the inferences justified based
on the study design and the results?
What limitations do the authors discuss? What
other limitations that may affect internal
validity do you find in the study?
Are the findings the authors present directly
related to the results from the data in the
Did the researchers discuss the study’s
implications for clinical practice or future
research and if so, were the implications
grounded in the study evidence, and in
evidence from earlier research?
Summarize the overall quality of the critiqued research study according to the benchmark quality sources cited.
Copyright B 2018 Wolters Kluwer Health, Inc. All rights reserved.
Szu-Chi Huang, MSc
Shu-Fen Kuo, PhD
Pei-Shan Tsai, PhD
Chia-Yin Tsai, MSc
Sheng-Shiung Chen, MSc
Chia-Yun Lin, MD
Pi-Chu Lin, EdD
Wen-Hsuan Hou, MD, PhD
Effectiveness of Tailored Rehabilitation
Education in Improving the Health
Literacy and Health Status of Postoperative
Patients With Breast Cancer
A Randomized Controlled Trial
Background: The improvement of breast cancer treatment and the extension of
Breast cancer
survivorship have led to the development of postoperative complications among
Health literacy
cancer survivors. Health literacy (HL), defined as patients’ capability of using health
Tailored education
information to maintain their health status, can enable breast cancer patients to
manage postoperative complications. Objective: The aims of this study were to
International Classification
of Functioning, Disability
and Health
develop a tailored rehabilitation education (TRE) program and examine the
effectiveness of this program in improving the HL and health status with breast
cancer. Methods: This randomized controlled trial recruited 99 breast cancer
patients (49 and 50 in the intervention and control groups, respectively) within
1 week after surgery. Four-week individualized TRE programs were implemented to
improve their HL and health status. Results: Our results showed that the TRE
program produced significant improvements in HL and health status in the
components of the International Classification of Functioning, Disability and Health.
However, no significant difference was observed in the activity scores obtained using
Author Affiliations: Department of Physical Medicine and Rehabilitation,
Taipei Medical University Hospital (Ms Huang and Drs CY Lin and Hou);
School of Nursing, College of Nursing, Taipei Medical University (Drs Kuo,
Tsai, and PC Lin); Department of Physical Medicine and Rehabilitation, E-Da
Cancer Hospital/I-Shou University, Kaohsiung (Ms Tsai); Department of
Physical Medicine and Rehabilitation, E-Da Hospital/I-Shou University,
Kaohsiung (Mr Chen); Department of Nursing, Wang Fang Hospital, Taipei
Medical University (Dr Tsai); Master Program in Long-term Care, College of
Nursing, Taipei Medical University (Ms Huang and Drs PC Lin and Hou);
School of Gerontology Health Management, College of Nursing, Taipei Medical
University (Dr Hou); and Department of Physical Medicine and Rehabilitation,
School of Medicine, College of Medicine, Taipei Medical University, Taiwan (Dr Hou).
Szu-Chi Huang and Shu-Fen Kuo, as well as Pi-Chu Lin and Wen-Hsuan
Hou, contributed equally to this paper.
This work was funded by Taipei Medical University (TMUTOP103004-1),
Taipei Medical University Hospital (104TMU-TMUH-24), and E-Da Hospital
(EDCHT-106011). The funders had no role in conducting or submitting this work.
The authors have no conflicts of interest to disclose.
Correspondence: Wen-Hsuan Hou, MD, PhD, School of Gerontology
Health Management, College of Nursing, Taipei Medical University, No. 250
Wuxing St, Xinyi District, Taipei City, Taiwan 11031 (houwh@tmu.edu.tw).
Accepted for publication August 22, 2018.
DOI: 10.1097/NCC.0000000000000665
E38 n Cancer Nursing , Vol. 43, No. 1, 2020
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Huang et al
the Barthel Index between the 2 groups. Conclusion: Our finding supports the
effectiveness of 1-month TRE in improving HL and all components of the International
Classification of Functioning, Disability and Health status, except the activity
component among breast cancer in Taiwan. Implications for Practice: Clinicians
could incorporate the TRE techniques in the rehabilitation sessions according to the
healthcare, disease prevention, and health promotion domains to improve the clinical
outcomes as well as change their health behaviors and attitudes of patients with
breast cancer.
reast cancer is the most commonly diagnosed malignancy among women.1 Patients with breast cancer may
develop postoperative complications such as neuromuscular skeletal problems, lymphedema, and contracture scars.2
Along with these physical impairments can arise psychological
illnesses and socioenvironmental problems,3 which can greatly
affect the overall health status and quality of life of these patients.4,5
However, some postoperative complications in these patients
are caused by low health literacy (HL), and only 21% of patients
with breast cancer seek professional rehabilitation assistance.6
Both self-care skills and quality of life must be promoted among
these patients.
The World Health Organization defines HL as the cognitive
and social skills that determine a person’s motivation and ability
to access, understand, appraise, and apply health information.7
In the past few years, almost 50% of the patients with breast
cancer in Taiwan have had low HL.8 Postoperative treatment
options for breast cancer are heterogeneous and complex, and
high HL enables the patients to effectively participate, communicate, and cooperate with clinicians throughout the treatment
process.9Y11 Therefore, educational programs for postoperative
patients with breast cancer are a prerequisite to achieving
higher HL rates and improving patients’ health status.
Educational interventions may not have the desired effect if
they are not based on recipient HL.12 Recently, individualized
educational programs have been recommended because their
outcomes are more favorable than those of conventional approaches.13Y15 Patients who receive health education tailored to
their HL gain the most health knowledge and have more favorable outcomes.14,15 Tailored rehabilitation education (TRE)16
has been shown to reduce musculoskeletal pain in Korean computer users.17 A tailored educational approach can improve health
knowledge, health behavior, quality of life, and general health in
patients with diabetes18 and those with cancer.16 However, few
adaptive educational interventions have been based on the concept of HL. Furthermore, few studies have assessed the effects of
HL-related intervention. Therefore, we used the integrated model
provided by the European Health Literacy Survey (HLS-EU)
Consortium19 to develop a TRE program tailored to the 3 health
domains of healthcare (HC), disease prevention (DP), and health
promotion (HP) for patients with different stages of cancer. We
also examined the effects of TRE on the HL and health status of
postoperative patients with breast cancer through a randomized
controlled study.
Tailored Rehabilitation Education for Breast Cancer
Female patients at a teaching hospital were recruited from March
2016 to September 2016. The inclusion criteria were as follows:
(1) clinical or pathological diagnosis of breast cancer confirmed
by a breast surgeon; (2) 20years or older; (3) breast cancer surgery
within 1month, with a referral to the rehabilitation department;
and (4) no history of cognitive impairment or brain metastasis.
This was an evaluator-blinded, randomized, prospective, controlled trial. Patients were stratified into 4 strata according to
the side of the lesion and the surgical approach. Numbered
envelopes containing cards indicating the intervention or control group were prepared for each stratum. At registration, eligible
participants were placed in 1 of the 2 groups according to the card
selected, and the therapist was informed of the allocation.
To ensure uniformity in intervention, 2 certified occupational therapists were trained by 2 primary investigators to administer the intervention and control protocols independently. The
2 occupational therapists recorded the outcome measures at the
baseline and immediately after the intervention. The evaluators
were blinded to the group allocation, and the participants were
blinded to the study hypotheses.
A trained occupational therapist administered the TRE program,
which included 4 TRE sessions and routine cancer rehabilitation
training, during daily occupational therapy sessions.
All participants in the intervention group received 4 visits from
the occupational therapist, which were scheduled on the second
and third days after surgery and in the third and fourth weeks
after discharge. The content of the TRE program was based on
the 3 domains of the HLS-EU: the HC domain (eg, surgical
wound care and postoperative exercise) during the acute stage at
the first and second visits, the DP domain (eg, preventing
physical complications) during the subacute stage at the third
Cancer NursingA, Vol. 43, No. 1, 2020 n E39
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
visit, and the HP domain (eg, return-to-work training and
mental health education) during the chronic stage at the fourth
visit. The content and procedure of the TRE protocol during
each visit were as followsV(1) first visit: 25minutes of explanation on surgical wound care (eg, knowledge and skill training
for wound care tailored to the individual’s surgical approach and
wound condition), 30minutes of teach-back to examine the
patient’s knowledge of wound care and skills in practicing it
correctly, and 5minutes of discussion to address the patient’s
questions and concerns; (2) second visit: 25minutes of explanation of postoperative rehabilitation exercise (eg, pumping and
shoulder-shrugging exercises) tailored to each patient’s ability,
25minutes of teach-back to examine the patient’s knowledge
of postoperative rehabilitation exercises and ensure that he/she
understood and could perform the exercise correctly, and
10minutes of discussion to answer the patient’s questions about
postoperative rehabilitation exercises; (3) third visit: 30minutes
of health education on preventing physical complications (eg,
lymphedema prevention and precautions regarding cancer-related
fatigue), 20minutes of teach-back to examine the patient’s knowledge on preventing physical complications, and 10minutes of
discussion to answer the patient’s questions about preventing
physical complications; and (4) fourth visit: 20minutes of returnto-work training (eg, adjusting to the workplace environment,
reducing energy consumption, and assistive devices), 10minutes
of consultation tailored to the patient’s individualized goals and
values, 20minutes of mental health education (eg, self-monitoring
mental health, performing mindfulness yoga, and breathing techniques to relieve stress), and 10minutes of consultation to address
any physical or mental problems. The educational materials, content, and duration of the TRE program were tailored according
to patient needs.
In addition to the daily rehabilitation routine, the participants in
the control group received 4 visits from the occupational therapist
and conventional health educational leaflets.20 Each health education session lasted 1hour and was delivered after the routine
rehabilitation programs. At the first visit, health education
leaflets were provided. At the second visit, questions related to
the health education leaflets were discussed. At the third and
fourth visits, problems related to breast cancer treatment and
rehabilitation were discussed. The interventionist would end the
discussion early if the patient had no questions.
Outcome Measures
Primary and secondary outcomes were assessed twice at 1day
preintervention and 1month postintervention. They included
clinical measures of HL, upper extremity functions, daily functions, mental health, and overall health. All measures were
adequately reliable and valid.
The 47-item HLS-EU Questionnaire (HLS-EU-Q) developed
by the HLS-EU Consortium was used to assess the HL of the
participants. The HLS-EU-Q measures 4 HL competencies
(access, understanding, appraisal, and application of health information) in 3 health domains: HC (16 items), DP (15 items), and
HP (16 items). Each item assesses patients’ self-perceived difficulty in performing selected health-related tasks on a 4-point
scale, ranging from 1 (‘‘very difficult’’) to 4 (‘‘very easy’’). Higher
scores indicate higher HL. For ease of comparison, the score of
each domain (ie, HC, DP, and HP) was rescaled from 0 to 50,
which is the scale used in the HLS-EU-Q.7 HLS-EU-Q score
results are classified into 4 levels of HL as follows: 0 to 25 for
inadequate, 25 to 33 for problematic, 33 to 42 for sufficient,
and 42 to 50 for excellent. The HLS-EU-Q has a high internal
consistency, test-retest reliability, construct validity, and concurrent
validity.21 Study have supported the use of this 3-domained HL
questionnaire for assessing the diverse HL competencies of women
with breast cancer in different health contexts. A Mandarin version
of the HLS-EU-Q was obtained from the Asia Health Literacy
Association. To ensure that our participants understood the
questions accurately, we added examples of mammography (in
the questions pertaining to health screenings) and mindfulness
and yoga (in the questions pertaining to activities that improve
health and well-being).
The secondary outcomes of health status were assessed according to the 6 components of the International Classification of
Functioning, Disability, and Health (ICF) framework: (1) body
structure and function: the Disability of the Arm, Shoulder, and
Hand questionnaire (DASH); (2) activities: the Barthel Index;
(3) participation: the Frenchay Activities Index (FAI); (4) personal
factors: the 5-item Brief Symptom Rating Scale (BSRS-5); (5)
overall health: the EuroQol-5D questionnaire (EQ-5D); and
(6) environmental factors: the physical environment and social
support for return to work.
This study used the short version of the DASH questionnaire,
which is a self-assessment scale comprising 11 items on daily life
functions, physical activity, and upper limb symptoms.22 Each
item assesses patients’ perceptions of the difficulty of performing
a task on a 5-point Likert-type scale ranging from 1 (‘‘no difficulty’’) to 5 (‘‘unable’’). A high score represents reduced function.23
The Barthel Index measures feeding, personal hygiene, toilet
use, bathing, dressing, bladder control, bowel control, mobility,
walking, and stair climbing. This index has been validated and
has favorable psychometric properties. The scores range from
0 to 100, with a higher score representing higher performance in
daily activities.24
The FAI assesses patients’ self-reported participation in
domestic chores, work, leisure, and outdoor activities, which
correspond to participation in the ICF framework.25 The total
scores range from 15 to 60. The Chinese FAI has a high validity
and reliability and has been used to assess patients’ level of participation after a traumatic limb injury.26
The BSRS-5 measures anxiety, depression, hostility, interpersonal sensitivity and inferiority, and insomnia. The responses
are rated on a 5-point Likert-type scale ranging from 0 (‘‘not at
all’’) to 4 (‘‘extremely’’). In Taiwan, the BSRS-5 is frequently
E40 n Cancer Nursing , Vol. 43, No. 1, 2020
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Huang et al
used to screen for depression in nonpsychiatric settings owing
to its high reliability and validity in identifying people with
depressive symptoms.27
The EQ-5D questionnaire measures quality of life and corresponds to overall health in the ICF framework.28 The EQ-5D
Index is based on a self-description system and has 5 dimensions:
mobility, self-care, usual activities, pain and discomfort, and
anxiety and depression. Each dimension has 3 choices (‘‘no
problem,’’ ‘‘some problems,’’ and ‘‘extreme problems’’). Respondents also rated their overall health using a visual analog scale
(EQ-5D VAS) ranging from 0 (‘‘worst imaginable health status’’)
to 100 (‘‘best imaginable health status’’).29
To avoid potential performance bias, 2 occupational therapists
independently provided the TRE program to the intervention
group and conventional care to the control group. Health literacy
and health status were assessed by another therapist who was not
involved in the intervention.
Statistical Analysis
Data were analyzed in SPSS 19.0.30 According to a pilot study,
a sample size of 54 was required for a 90% likelihood of
detecting a significant difference with a type I error of .05. The
pilot study revealed an effect size of 0.41 in health knowledge
improvement after patient-centered intervention for patients
with breast cancer.31 Baseline differences between the groups
were analyzed using analysis of variance for continuous data
and # 2 for categorical data. To control for the variances in
pretest scores between the groups, analysis of covariance was
used to compare posttest scores at different endpoints between
the groups. No multiple testing corrections were performed to
avoid type II errors because the intervention was in its early
stage of development.
A post hoc analysis of highly significant outcome variables
was conducted to evaluate within-group differences. The standardized mean difference presented as Cohen d was calculated for
each outcome variable to indicate the magnitude of withingroup differences. The effect sizes were classified into small
(G0.2), medium (0.2Y0.8), and large (90.8).32 The level of
statistical significance (!) was set at .05 for all comparisons.
groups had problematic HL (36.7% and 44.0%, respectively),
followed by sufficient HL (32.7%) in the intervention group
and inadequate HL (12.0%) in the control group at baseline.
Table 2 provides the Pearson correlation matrix between the
scores of HL and health status after intervention. The general
HL scores and domain-specific HL scores were significantly
correlated with scores in the DASH questionnaire (Pearson
r= 0.48Y0.59), FAI (Pearson r = 0.37Y0.48), EQ-5D Index
(Pearson r=0.40Y0.46), EQ-5D VAS (Pearson r=0.42Y0.50),
and BSRS-5 (Pearson r=0.19Y0.33). In addition, return-to-work
scores demonstrated slight correlations with general HL and
domain-specific HL (Pearson r=0.18Y0.25). However, no significant relationship was observed between HL scores and Barthel
Index scores.
The effects of TRE intervention on HL and health status
were investigated, and the results are presented in Table 3. The
HL scores of the intervention group were significantly higher
than those of the control group. The mean HL score differences
after intervention in the intervention group versus the control
group were 5.54T 6.47 versus j1.70T 7.27 (Cohen d=1.05,
PG .001) for general HL, 6.27T 6.29 versus 0.48T 6.34 (Cohen
d=0.92, PG.001) for the HC domain of HL, 5.89T7.41
versus j0.98T9.51 (Cohen d=0.82, PG .001) for the DP
domain of HL, and 7.93T 8.56 versus j1.75T10.25 (Cohen
d=1.03, PG .001) for the HP domain of HL. After TRE
intervention, most patients in the intervention group had sufficient
HL (40.8%), followed by excellent HL (30.6%). By contrast, most
patients in the control group had problematic HL (56%).
The mean scores of all health status measures after intervention differed significantly between the intervention and control groups except for the Barthel Index (DASH questionnaire,
j24.82T12.99 vs j15.89T13.07, Cohen d=j3.405, PG.05;
FAI, 25.59T 9.01 vs 19.78T8.97, Cohen d=0.646, PG.05;
BSRS-5, j1.94T 3.47 vs j0.42T2.98, Cohen d=j0.469,
P G.05; EQ-5D Index, 0.18T 0.25 vs 0.08T0.23, Cohen
d = 0.393, P G .05; and EQ-5D VAS, 12.69 T16.68 vs
2.36T 13.42, Cohen d=0.682, PG .05). In addition, after
intervention, the proportion of patients who returned to work
was significantly higher in the intervention group (57.1%)
than in the control group (22%) (Table 4).
The Figure depicts the flow diagram of the study. Of the 120
eligible female patients, 21 were excluded for not meeting
inclusion criteria (n=18) or were lost to follow-up (n=3).
Finally, 99 patients with breast cancer (aged 24Y85 years) were
randomly allocated to the TRE program (intervention group,
n=49) or routine standard care only (control group, n=50). No
significant differences in demographics, HL, or health status
were observed between the groups (Table 1). Regarding HL,
the average scores for each domain of the HLS-EU-Q ranged
from 30 to 34 (of 50) in both the intervention and control
groups. In addition, the highest proportion of patients in both
Tailored Rehabilitation Education for Breast Cancer
In this study, after the TRE program, the intervention group
had not only a higher HL but also a more favorable health
status than did the control group, as assessed by the DASH
questionnaire, FAI, BSRS-5, EQ-5D Index, and EQ-5D
VAS. However, no significant improvement was observed in
the Barthel Index scores, possibly because of its insufficient
sensitivity in measuring basic activities of daily living (ADLs)
in postoperative patients with breast cancer.
Effect of TRE on Health Knowledge
Most studies related to TRE have focused on changes in health
behavior18,33 or health status with chronic diseases.18,34 Only 1
Cancer NursingA, Vol. 43, No. 1, 2020 n E41
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Figure n Flow diagram of the enrollment of patients and completion of the study according to the Consolidated Standards of
Reporting Trials statement.
study revealed that a patient-centered intervention involving a
health information card could significantly improve knowledge
of breast cancer history, recurrence risk, and treatment among
patients with acute breast cancer.31 However, this preinterventionpostintervention study did not involve a control group. To the best
of our knowledge, our study is the first to adopt TRE interventions to promote HL. Previous studies have provided contradictory results regarding TRE interventions. Tailored educational
interventions have been shown to increase the HL and medical
knowledge of nutrition in the general population,35 patients with
hypertension,36 patients with diabetes,18 and caregivers of children
with asthma.37 However, health education intervention did not
significantly improve knowledge about diabetes in low-HL patients with diabetes.38 Two possible explanations for this nonsignificant effect are as follows: First, health performance may
have been affected by age39 and education.40 Second, the study
did not control for differences in inpatient capacity and individual preferences. However, our study revealed significant increases in all aspects of HL (ie, general HLS-EU-Q and the
domains of HC, DP, and HP). In contrast to the study by
Kim et al, only 7% of the participants in the present study were
older than 65years, and 58.8% of the participants had more
than 12years of education, indicating that the TRE program
might be more effective among patients with breast cancer who
are younger or have higher HL.
Effect of TRE on Health Status
In this study, the TRE program improved the health status components of the ICF framework, which is supported by the findings of 4 studies that have reported favorable outcomes of TRE.
Williams et al34 identified significant effects of counseling on the
health status components of body structure, body functions, and
personal factorsVafter 3months of adaptive nutritional counseling, patients with diabetes showed significant improvements in
psychological scores, exercise frequency, and body mass index.
O’Connor et al16 demonstrated the effects of a tailored therapeutic
intervention on the health status components of personal factors
and participationVafter an educational intervention, patients
with colorectal cancer showed improved anxiety and depression
scores and higher satisfaction associated with acquiring health
information. Lennox et al41 revealed that computerized oneon-one adaptive health education on smoking could significantly
increase the success rate of smoking cessation, thus supporting the
effects of TRE on overall health. Finally, Hill et al42 evaluated the
effects of tailored education interventions as fall prevention
E42 n Cancer Nursing , Vol. 43, No. 1, 2020
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Huang et al
Table 1 & Characteristics of the Study
Table 1 & Characteristics of the Study
Participants (N = 99)
Participants (N =99), continued
Group (n = 49) Group (n = 50)
Age, n (%)
24Y45 y
20 (40.8)
16 (32.0)
45Y65 y
24 (49.0)
32 (64.0)
965 y
5 (10.2)
2 (4.0)
Marital status, n (%)
Divorced, widowed,
8 (16.3)
11 (22.0)
41 (83.7)
39 (78.0)
Education, n (%)
Primary school
5 (10.2)
2 (4.0)
High school
15 (30.6)
25 (50.0)
22 (44.9)
19 (38.0)
Graduate school
7 (14.3)
4 (8.0)
Occupation, n (%)
5 (10.2)
4 (8.0)
14 (28.6)
19 (38.0)
Professional staff
17 (34.7)
8 (16.0)
Business/service sales/
13 (26.5)
19 (38.0)
technical workers
Residential area, n (%)
Taipei City
24 (49.0)
26 (52.0)
New Taipei City
21 (42.9)
16 (32.0)
Other city
4 (8.2)
8 (16.0)
AJCC cancer staging, n (%)
Stage I
26 (53.0)
23 (46.0)
Stage II
18 (36.7)
20 (40.0)
Stage III
4 (8.2)
5 (10.0)
Stage IV
1 (2.0)
2 (4.0)
Surgical site, n (%)
26 (53.1)
28 (56.0)
23 (46.0)
24 (44.0)
Surgical approach, n (%)
Partial excision
26 (53.1)
23 (46.9)
Total excision
23 (46.0)
27 (54.0)
Cosmetology for the
breast, n (%)
12 (24.5)
12 (24.0)
37 (75.5)
38 (76.0)
Health literacy score,
mean (SD)
31.99 (8.29)
30.88 (8.55)
33.97 (7.02) 32.47 (8.38)
Disease prevention 32.43 (10.39) 30.49 (11.72)
Health promotion
29.61 (9.47) 29.67 (9.73)
Health literacy level,
n (%)
9 (18.4)
11 (22.0)
18 (36.7)
22 (44.0)
16 (32.7)
12 (12.0)
6 (12.2)
5 (5.0)
Group (n = 49) Group (n = 50)
Health status, mean (SD)
58.29 (15.61)
Barthel Index
86.43 (12.37)
2.41 (3.29)
4.24 (3.15)
EQ-5D Index
05.3 (0.29)
65.94 (20.14)
58.75 (13.53)
85.80 (13.53)
3.02 (3.87)
4.50 (2.89)
0.52 (0.287)
66.44 (147.38)
Abbreviations: AJCC, American Joint Committee on Cancer; BSRS-5, 5-Item
Brief Symptom Rating Scale; DASH, Disability of the Arm, Shoulder, and
Hand; EQ-5D Index, EuroQol-5D Index; EQ-5D VAS, EuroQol-5D Visual
Analog Scale; FAI, Frenchay Activities Index; HLS-EU-Q, European Health
Literacy Survey questionnaire.
strategies in older patients and revealed that such interventions
could facilitate improvement in the environmental factors of
the ICF framework by promoting the use of HC services. Our
study had similar results and revealed significant improvements
in EQ-5D scores. However, the Barthel Index scores did not
significantly improve in the present study. Thus, our results were
inconsistent with those of a previous study on adaptive education
in which the intervention affected the activity component by
improving the self-care of older patients at risk of falling.42 This
inconsistency may have resulted from the ceiling effect of the
Barthel Index in measuring ADLs of a population with mild
disability, such as patients with breast cancer.
Relationship Between HL and Health Status
Our study revealed the beneficial effects of a TRE program on
HL and health status. The relationship between HL scores and
ICF-related components, namely, body function and structure,
participation, personal factors, and overall health, was found to
be significant based on the DASH questionnaire, FAI, BSRS-5,
and EQ-5D, respectively. High HL can result in good physical
function,43 independent ADL,44 and favorable work performance44
among older adults; relatively high community involvement among
people in Taiwan45; and a superior quality of life and relatively
low mental distress among patients with cancer.46 However, our
study did not find a significant relationship between the Barthel
Index and HL, possible because of the insufficient sensitivity of
the Barthel Index in measuring the ADLs of patients with breast
cancer. In addition, our results revealed a small correlation between return to work and HL. A possible explanation may be that
at the postoperative stage, most patients with acute breast cancer
focus on disease recovery rather than on work. Therefore, further
longitudinal observational studies are required to examine the
long-term effects of HL improvement and return to work.
Study Strengths
First, the random group allocation through block stratification eliminated potential confounders and yielded even sample sizes between
the 2 groups to prevent possible selection bias. Second, despite the
Tailored Rehabilitation Education for Breast Cancer
Cancer NursingA, Vol. 43, No. 1, 2020 n E43
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Table 2 & Correlation Matrix of the Variables of Health Literacy and Health Status After Intervention (N = 99)
Health Literacy Score
HLS-EU-Q Healthcare
Health literacy score
Disease prevention
Health promotion
Health status
Barthel Index
EQ-5D Index
Return to work
Health Status
DASH Barthel
Abbreviations: BSRS-5, 5-Item Brief Symptom Rating Scale; DASH, Disability of the Arm, Shoulder, and Hand; EQ-5D Index, EuroQol-5D Index; EQ-5D
VAS, EuroQol-5D Visual Analog Scale; FAI, Frenchay Activities Index; HLS-EU-Q, European Health Literacy Survey questionnaire.
P G .01.
P G .05.
low rate of loss to follow-up (3%), we performed a sensitivity
analysis, which revealed that the baseline characteristics of respondents and nonrespondents did not vary significantly. Furthermore, multiple regression analysis demonstrated that HL change
partially mediated the pathway of TRE intervention to health
status (eg, EQ-5D VAS).47 However, we did not include the
analysis in our article because our primary and secondary outcomes
were measured simultaneously in the postintervention assessment.
Further path analysis studies may be needed in the future to
understand the ultimate changes in health behavior and attitudes.
educated patients, which might limit the generalizability of our
study results. Second, throughout the study period, 2 therapists
independently provided the intervention and control protocols
to the intervention and control groups, respectively, and a third
therapist who was blinded to group allocation conducted the
preevaluation and postevaluation analyses to avoid potential
performance and detection biases; however, the blinding of both
therapists and patients was difficult to maintain.
Study Limitations
First, our study participants were recruited from a single
teaching hospital and comprised relatively young and highly
In Taiwan, almost 50% of women have low HL, and our results
demonstrated that implementing a 1-month TRE program for
patients with breast cancer could significantly improve their HL
Table 3 & Changes in Health Literacy and Health Status Between the Intervention and Control Groups (N =99)
Health literacy score
Disease prevention
Health promotion
Health literacy level
Health status
Barthel Index
EQ-5D Index
Intervention (n = 49), Mean (SD)
Control (n = 50), Mean (SD)
Cohen d
5.54 (6.47)
6.27 (6.29)
5.89 (7.41)
7.93 (8.56)
j1.70 (7.27)
0.48 (6.34)
j0.98 (9.51)
j1.75 (10.25)
3 (6.1)
11 (22.4)
20 (40.8)
15 (30.6)
10 (20.0)
28 (56.0)
10 (20.0)
2 (4.0)
j24.82 (12.99)
12.86 (12.03)
25.59 (9.01)
j1.94 (3.47)
0.26 (0.32)
12.69 (16.68)
j15.89 (13.07)
12.10 (14.00)
19.78 (8.97)
j0.42 (2.98)
0.14 (0.29)
2.36 (13.42)
Abbreviations: BSRS-5, 5-Item Brief Symptom Rating Scale; DASH, Disability of the Arm, Shoulder, and Hand; EQ-5D Index, EuroQol-5D Index; EQ-5D
VAS, EuroQol-5D Visual Analog Scale; FAI, Frenchay Activities Index; HLS-EU-Q, European Health Literacy Survey questionnaire.
E44 n Cancer Nursing , Vol. 43, No. 1, 2020
Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.
Huang et al
Table 4 & Return-to-Work Conditions After
Tailored Rehabilitation Education
Programs (N = 99)
Return to work
Group (n = 49)
Control Group
(n = 50)
N (%)
N (%)
28 (57.1)
21 (42.9)
11 (22.0)
39 (78.0)
and all components of the ICF health status, except the activity
component. The nonsignificant difference in the activity
component might have been due to the insufficient sensitivity
of the Barthel Index. Additional studies should apply more
precise measurement of ADL to examine the effect of TRE on
the activity component of the ICF health status among
postoperative patients with breast cancer. Moreover, the longterm retention rate of HL and health status should be
determined through follow-up studies in different clinical
settings. Furthermore, the generalizability of TRE intervention
for its application in different facets of the HC domain should
be investigated.
Practical Implications
We recommend that clinical professionals incorporate TRE in
other rehabilitation settings to improve health status by promoting the HL of postoperative patients with breast cancer
across acute, subacute, and chronic stages. Moreover, oncology
nursing practitioners should establish patient-centered interventions according to the HC, DP, and HP domains to improve the
clinical outcomes of patients with breast cancer in Taiwan.
Improving the ability of patients with breast cancer to access,
understand, appraise, and apply health information through
TRE could change their health behaviors and attitudes and
ultimately improve their health status. Thus, TRE programs
could comprehensively improve the overall health of patients
with breast cancer in Taiwan.
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Huang et al
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
Couples’ Experiences of Parenting a Child After an Autism Diagnosis:
A Qualitative Study
Naomi Downes1 · Jérôme Lichtlé1 · Kristopher Lamore1 · Marie‑Joëlle Orêve2 · Emilie Cappe1
Accepted: 29 September 2020 / Published online: 16 October 2020
© Springer Science+Business Media, LLC, part of Springer Nature 2020
After a child is diagnosed with autism, parents’ relationships are impacted as they reorganize their daily lives to support
their child’s specific needs. A better understanding of parenting couples’ adaptation is needed to accompany them during
this period. This qualitative study explored couples’ experiences after their child’s autism diagnosis. An inductive thematic
analysis among ten couple interviews (N = 20) revealed three key themes: emotional experiences, external support, and
adaptation. Overall, the quality of couples’ relationships before having a child influenced their relationship after the diagnosis. In general, parents presented complementary coparenting roles, while different opinions about how to raise the child
strained their relationship. Helping parents adapt to a diagnosis together could prove to be important for future interventions
and research.
Keywords Parents · Couples · Coparenting · Autism · Diagnosis · Qualitative analysis
Autism is characterized by certain difficulties in social
communication and interactions, as well as the presence
of restricted, repetitive patterns of behaviors, interests, or
activities (American Psychiatric Association (APA) 2013).
An early diagnosis of autism is recommended to access
interventions likely to have a positive impact on the child’s
development (Landa 2018; Rabba et al. 2019; Rogé 2019).
Yet, the diagnosis process is often long and challenging for
parents (McGrew and Keyes 2014). They experience various emotions such as shock, despair, relief, and stress during this period (Boshoff et al. 2019). This process, from the
time between becoming aware of the first signs of autism
and finally obtaining an official diagnosis, plays an important role in how parents progressively adapt to their child’s
autism (Gentles et al. 2020). A UK survey conducted with
1047 parents of children on the autism spectrum indicated
that over half were dissatisfied with the diagnostic process
* Emilie Cappe
Université de Paris, LPPS, F‑92100 Boulogne‑Billancourt,
Service de Psychiatrie Infanto‑Juvénile, Centre Hospitalier
de Versailles, 78150 Le Chesnay, France
(Crane et al. 2016). Factors associated with parents’ satisfaction included: time waiting for a diagnosis; stress during the screening process; the child’s age when diagnosed
with autism; as well as post-diagnostic support (Crane et al.
2016). After a diagnosis, parents often struggle to find and
manage qualified health care providers (Bonis 2016). Their
lives change to meet the specific needs of their child (Altiere and von Kluge 2009; Karst and Van Hecke 2012). This
includes reorganizing their parenting responsibilities and
roles, which can impact family life and the parent’s relationship (Gau et al. 2012; Hock et al. 2012). Couples’ relationships become highly focused on parenting with each partner
being forced into a rigid parenting role, with mothers generally spending more time in childcare and fathers spending
more time at work (Hartley et al. 2014; Hock et al. 2012).
Recent studies have explored how raising a child on
the autism spectrum affects the parent’s relationship. A
meta-analysis showed that couples parenting a child on
the autism spectrum experienced less relationship satisfaction than parents of typically developing children (Sim
et al. 2016). Other studies have highlighted how the child’s
autism can positively impact the couple’s relationship
(Saini et al. 2015). For example, the shared experience of
managing stress to meet their child’s needs can strengthen
some couples’ relationships (Altiere and Von Kluge 2009;
Bayat 2007; Hutton and Caron 2005). Hock et al. (2012)
conducted retrospective interviews with couples suggesting parents’ relationships may evolve at different rates
over three different phases. The first phase was described
as a time of “make or break” after a diagnosis when the
child’s autism tests the couple’s relationship. Couples then
entered a second phase of “tag team” where their relationship was mainly centered around parenting the child on the
spectrum. Finally, some couples managed to pass to the
last phase of deeper intimacy and commitment when they
realized how important it was to focus on their relationship for themselves and their child. These findings can be
compared to mothers’ reports in interviews conducted by
Gentles et al. (2019), who showed that the initial process
of coming to terms with the child’s autism can motivate
parents to be highly active in pursuing an intervention.
This high level of engagement can be endured for months
and sometimes years until parents realize that they cannot maintain in the long term investing so much time and
energy. This leads to parents “easing off” to find more
balance in their life.
Parents raising a child on the autism spectrum generally consider their couple relationship as a primary source
of support (Benson and Kersh 2011; Hartley et al. 2011;
Goedeke et al. 2019; Pepperell et al. 2018). It is important
to understand how couples can support each other after their
child is diagnosed with autism as they experience accentuated levels of stress during this period (McGrew and Keyes
2014). High levels of stress impact parenting, family functioning, and the parent’s relationship (Bonis 2016; Peterson
and Hawley 1998). For example, stress leads to more conflict
and affects parents’ ability to support each other to manage
their child’s daily care (Thullen and Bonsall 2017; Bonis
2016). Many studies have focused on individual coping strategies for managing parents’ stress (Bonis 2016; Lai and Oei
2014; Vernhet et al. 2019). Yet, two intimate partners react
to life stressors, such as an autism diagnosis, as an interpersonal unit rather than as individuals (Bodenmann et al.
2019). Couples share their thoughts and feelings, as well
as work together to focus on resolving a common problem
(Bodenmann et al. 2019). This process of interaction corresponds to the concept of dyadic coping. Currently, only
four studies have explored dyadic coping among couples
raising a child on the autism spectrum (Brown et al. 2020;
García-Lopez et al. 2016; Gouin et al. 2016; Sim et al.
2017). Positive and supportive dyadic coping is associated
with relationship satisfaction, as well as lower levels of
stress and physiological indicators that influence health outcomes among couples with a child on the spectrum (Brown
et al. 2020; García-Lopez et al. 2016; Gouin et al. 2016;
Sim et al. 2017). Dyadic coping is an additional source of
support for these parents as it strengthens their relationship
by promoting a sense of togetherness (García-Lopez et al.
2016; Bodenmann 2005).
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
However, few studies have assessed how couples adapt
and support each other after their child is diagnosed with
autism. Among the wider population, couples who do not
support each other encounter difficulties in their coparenting relationships to work together to fulfill their parental
roles and responsibilities (McHale 1995). Coparenting
refers to how two individuals support, coordinate, and
cooperate when raising a child (Gable et al. 1994). To
date, only a few studies have assessed the coparenting
relationship among parents of children on the spectrum.
A high-quality coparenting relationship has been shown
to help parents of children on the autism spectrum experience less stress (Hill-Chapman et al. 2013; May et al.
2015; Thullen and Bonsall 2017). Individual interviews
with couples revealed the importance placed on making
the coparenting relationship more efficient after a diagnosis of autism (May et al. 2017). It seems the unique
demands of autism require parents to reorganize and rely
on their coparenting relationship after a diagnosis (Hock
et al. 2012; May et al. 2017).
Overall, couples seem to adapt and evolve differently,
with some being more resilient than others (Saini et al.
2015; Sim et al. 2016). To date, fathers are not often
recruited in research concerning children on the autism
spectrum (Rankin et al. 2019). As a result, the mother’s
experiences are being generalized to represent the overall
experiences of parenting a child on the autism spectrum.
Further exploration of both mother’s and father’s individual and joint experiences is needed to understand variables
related to positive outcomes among heterosexual as well
as LGBTQ + couples. Study samples have also included
parents of differently aged children. For example, Hock
et al.’s (2012) study recruited parents of children aged
between 2 and 29 years. Yet, parents’ relationships and
resources can vary throughout their child’s different developmental stages (Favez 2017). Given the higher levels of
stress, unique parenting demands of autism, and the effects
on the couple’s relationship, research exploring how parenting partners adapt and support each other during the
stressful period following an autism diagnosis seems particularly relevant. This qualitative study uses couple interviews to explore and understand couples’ experiences after
their child has been recently diagnosed with autism by
investigating how parenting couples use their relationship
as a support system, communicate, and work as a team to
fulfill their parenting responsibilities.
Authors followed O’Brien et al. (2014) checklist to write
this article.
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
Twenty parents (11 mothers and 9 fathers), consisting of
nine different-sex couples and one same-sex couple, were
recruited through a screening center for autism in France.
Couples were eligible if (1) they cohabitated and were in an
intimate relationship since their child’s birth; (2) their biological child received a diagnosis by a specialized autism screening center between the ages of 2 to 6 years and 11 months; (3)
the diagnosis was given 1–36 months ago. The first criterion
regarding couples’ relationship length and living situation
was to ensure relationship stability. In France, children are
usually diagnosed up to the age of 6 and it is not recommended to diagnose a child with autism before the age of 2
(Baghdadli et al. 2006). The period of 1–36 months after a
diagnosis was chosen to account for the evolution of parents’
stress appraisal over time (Mcgrew and Keyes 2014). Parenting couples were excluded if they did not speak French or if
they had another child with a disability.
In this study sample, participants had an average age of
38 years, which ranged from 30 to 47 years. Couples had been
together 11.6 years on average, ranging from 4 to 22 years. At
the time of the interview, their children were aged between
30 and 84 months with an average age of 50 months. Nine
of the children on the spectrum were boys. The average
time since diagnosis was 15 months and ranged between 1
and 36 months. In this sample, all children on the spectrum
attended mainstream kindergarten on a part-time basis and
half of them benefitted from between 1 and 5 hours of specialized care per week. A total of five couples had another child
and two couples had two other children. Among two couples,
three parents declared health issues. One couple worked full
time, two couples worked part-time, four couples consisted of
the father working full-time whereas the mother worked parttime, and there were three couples where one worked fulltime as the other parent stayed at home. Monthly household
income was diverse, with five couples situated in the lowerclass range and the other half in the middle-class range. Six
parents had a high-school degree, and the rest had a highereducation degree. Regarding ethnicity, eleven parents were
French, whilst nine parents had different origins. Even though
couples were selected on a first-come-first-served basis, the
sample is relatively heterogeneous. Participants’ characteristics are presented in Table 1.
Materials and Design
This qualitative study used joint couple interviews to explore
how couples: communicated about their child’s autism diagnosis, used their relationship as a support system to deal
with the diagnosis, and experienced the screening process.
Couple interviews were conducted with both parenting partners present to explore couples’ discussions about their joint
experience of raising a child on the autism spectrum after
a recent diagnosis. Joint couple interviews are interesting
as they can provide rich data on what couples agree and
disagree on, as partners can either corroborate or challenge
each other’s stories (Bjørnholt and Farstad 2012). An interview schedule (Table 2) of eleven questions was developed
to guide the interviewer. Interviews began with a brief presentation of the current study as well as informing the parents about their ethical rights. The interviewer told couples
to express themselves freely and follow any associations.
They were also informed that all questions were addressed to
both of them. To elicit detailed responses from each partner,
the interviewer used general probes such as “What is your
opinion about this?”, “What are your thoughts about what
your partner just said?”, or “Can you give me an example”.
This study is part of a larger research project including quantitative and qualitative data to explore how couples use their
intimate and coparenting relationship to support each other
in the three years following their child’s autism diagnosis.
This project received approval from the ethics Committee
for the Protection of Persons (CPP) in France. Parents who
completed questionnaires during the quantitative part of this
project were asked if they were willing to participate in a
couple’s interview. The first couples interested in participating were contacted to convene a time and date. Overall,
ten interviews were conducted until data saturation (Guest
et al. 2020). Five interviews were conducted at the screening center and five by telephone as the parents resided at a
distance. All interviews were conducted by the first author,
a clinical psychologist, between May to September 2019.
These semi-directive interviews were audio-recorded for
later transcription and generally lasted an hour.
This study followed Braun and Clarke’s (2006) guidelines to
perform a thematic content analysis. An inductive approach
was used to explore participants’ experiences. Themes were
analyzed in French at a semantic level using an essentialist
method. Two authors (ND and JL) performed data analysis to ensure study strength and reliability (MacPhail et al.
2016). The first stage consisted of becoming familiar with the
interviews by repeated readings. Initial codes were then produced by manual open coding. These codes were sorted into
themes, which were refined by analyzing these themes within
the data set. An initial coding guide of interview themes was
generated and differences in findings were discussed until
consensus among four authors was reached (ND, JL, KL,
and EC). Interviews were then manually recoded (by ND
and JL) using the updated coding guide. A second meeting
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
Table 1  Sample characteristics
Couples’ names
Length of relationship (years)
Linda (40)
Patrick (41)
Patricia (30)
Peter (31)
Sophie (40)
Richard (47)
Katie (39)
Harry (39)
Beth (40)
Robert (39)
Val (31)
Alice (33)
Andrea (41)
David (41)
Fiona (37)
Luke (44)
Hayley (39)
Elliot (40)
Emma (34)
Mark (40)
Monthly household income
(in €)
At home
2 year degree
High school
At home
High school
High school
At home
High school
High school
2 year degree
High school
Health issues
Children’s gender
Boy (10 years)
Boy (66 months)a
Girl (54 months)a
Boy (2 years)
Boy (36 months)a
Boy (3 months)
Weekly amount
of specialized
Time since
Boy (36 months)a
Boy (60 months)a
Boy (2 years)
Boy (7 months)
Girl (10 years)
Boy (36 months)a
Girl (7 months)
Boy (6 years)
Boy (36 months)a
Boy (10 years)
Boy (60 months)a
Boy (84 months)a
Boy (30 months)a
Child on the autism spectrum
between the four authors ensured the coding guide was coherent and presented clearly defined themes. This coding guide
was then added to Nvivo and both authors (ND and JL) independently recoded the interviews using this software. This
analysis confirmed that the manually generated coding guide
was satisfactory as the inter-rater agreement was k = 0.79.
A value of k (Cohen’s kappa coefficient) between 0.61 and
0.80 is considered significant according to Viera and Garrett
(2005). The first author (ND) who is a native English speaker
then translated the selected interview extracts for this paper.
We used pseudonyms to protect participants’ identities. It is
important to note that the frequency of occurrence of themes
and sub-themes (i.e., among how many interviews a theme
appears) is presented in the results from a descriptive point
of view. This information does not intend to quantify results
as the frequency of a theme does not equate to its importance
within the dataset (Braun and Clarke 2006).
A total of three themes and eight sub-themes describe couples’ experiences after their child’s autism diagnosis (see
Table 3). The three key themes related to couples’ emotional
experiences, external support, and their adaptation. Any
experience that is not shared by both partners is detailed
within the sub-section.
Theme 1: Emotional Experiences
All couples reported various emotional responses at different
time frames. Two subthemes emerged: emotional responses
from the first signs of autism to the diagnosis; and daily
emotional responses after the diagnosis.
Emotional Responses from the First Signs of Autism
to the Diagnosis
All couples expressed emotions related to the period where
they noticed the first signs of autism until the diagnosis at
the screening center. Among five couples, both partners
described this time as a progressive process that minimizes the shock of receiving their child’s autism diagnosis.
They stated that even though the diagnosis came as a slight
shock, they mainly felt relief after so much time doubting
and waiting for the diagnosis. As Emma and Mark mention
“Emma: It was a relief as well because for one year we
were between maybe yes maybe no and that was emotionally exhausting.[…] Mark: overall we had the feeling that
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
Table 2  Interview questions
How did you experience the diagnosis?
How did the two of you communicate with each other about the diagnosis?
How did the two of you communicate with each other about what you felt when
What about after the diagnosis?
you received the diagnosis?
What do you do when your partner shares their thoughts and feelings?
What happened in your daily life during the weeks following the diagnosis?
How was it different to before?
How do you use your relationship to deal with the challenges of having a child on Specifically, what did you do together to cope with the chalthe autism spectrum?
lenges of raising a child on the autism spectrum?
How do you protect your partner from the challenges linked to having a child on
the autism spectrum?
How do you protect your relationship from the challenges linked to having a child
on the autism spectrum?
How do you go about fulfilling your various parental tasks and responsibilities?
In general, what support would be helpful for you to better manage your stress
In particular, how could professionals support you with this?
What advice would you give a couple in your situation during the weeks following With what you know now, what would you change?
the diagnosis?
we finally understood and could now move on”. The opposite was described by two couples who experienced the
diagnosis as being very difficult and a great shock. For Val
and Alice: “Val: It was a shock even if we had doubts at
the beginning.[…] Alice: It was complicated, very difficult
to accept”. Among three couples, partners experienced different emotional responses to the diagnosis. These mothers
were not convinced by the autism diagnosis whereas the
fathers expected and accepted the diagnosis. For example,
Luke: “I quickly accepted it. My main issue was my wife’s
denial, she was in distress”.
Daily Emotional Responses After the Diagnosis
Couples identified a range of emotions they experience daily
after the autism diagnosis. Seven couples described their
daily life as complicated with numerous highs and lows. As
Linda states “There are highs and lows, sometimes there are
Table 3  Interview themes
big lows and sometimes small moments of happiness”. Or
Mark: “Sometimes I’m happy and sometimes less happy, it’s
like that”. One partner among five couples discussed sometimes feeling depressed or nearly breaking down. For Beth:
“Even if I didn’t show it physically or personally to people,
I believe I was depressed”. Or Peter: “Even in the ESDM
[Early Start Denver Model] book, they talk about situations
where parents even think about suicide, and we haven’t
thought about suicide but sometimes we just feel that we’ll
never be able to make it, it’s not possible”. Seven couples
talked about often feeling physically or mentally exhausted.
As Mark explains “It’s more a mental exhaustion” or Peter
“It’s true that physically, we are so tired”. Finally, seven
couples experienced a regular burden of stress and worry
when organizing childcare as the administration and lack of
services demands constant preparation and anticipation. As
Katie and Harry emphasize “Katie: We are more worried
about the organization… it’s more how am I going to go
back to work, how is this going to work out, in the end, it’s
1. Theme 1: emotional experiences
1.1. Emotional responses from the first signs of
autism to the diagnosis
1.2. Daily emotional responses after the diagnosis
2.1. Grandparents
2.2. Service providers
2.3. Community
3.1. Individual
3.2. Coparenting
3.3. Couple
2. Theme 2: external support
3. Theme 3: adaptation
all about logistics and in the end, we don’t even worry about
our child. Harry: Yes, we feel pretty confident he’ll be fine”.
Theme 2: External support
All couples identified a need for support from external
sources, which was not always provided. This external support is divided into three sub-themes involving grandparents,
service providers, and their community.
Eight couples highlighted the importance of grandparents
for babysitting their children. Three of these couples sent
their child to stay with their grandparents during holidays
but did not feel they could ask grandparents to babysit at any
other time. Four couples expressed distress when grandparents lived at a distance as they could not provide babysitting.
These couples did not trust anybody else to babysit their
child. Fiona said, “The fact that we don’t have family here,
both our parents are in Algeria, I have a hard time trusting
anyone else with my children, so we only go out as a couple when we go to Algeria”. Or David spoke about how he
“would have loved to have grandparents living close by, to
relieve us a little from our child now and again”. Finally,
grandparents were also considered unsupportive by five
couples as they would judge or pressurize parents. Andrea
shared “Then there is also the grandma who is so worried
she puts pressure on us” or as Peter stated “Their judging
and everything, I’ve just had enough”.
Service Providers
Support provided by service providers was separated into
three sub-groupings. First, specialized care services offered
support to eight couples through parent training programs.
For Fiona, a psychologist provided parental guidance every
month: “well it was really positive for me because I saw
that it helped”. Richard said: “I admit that when we left the
diagnostic center we had no idea. We had a very vague idea
of what ABA [Applied Behavior Analysis] was and therefore
the parent training helped because we really went in-depth
and saw the results that had been achieved with other children on videos. And suddenly that gave us a frank idea of
what progress could be achieved”. Five couples appreciated
the support provided for parenting but thought they lacked
time with a psychologist for emotional support. Emma and
Mark were in therapy with a psychologist who only concentrated on their child “Emma: We never spoke about
our relationship. And that was the space for that. I don’t
know, it’s true that no professional has spoken to us about
us as a couple. Mark: That’s true.[…] I would have found it
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
reassuring. Emma: Yes, but would we have told her about
the relationship difficulties we were experiencing at that
time? I’m not sure. Mark: I’m sure we would have, but even
if we didn’t it would have reminded us to think about our
relationship”. Four couples felt “lucky” with their care service due to there being a lack of spaces in specialized care.
As Richard said, “Yes, and I also found that we were very
lucky to get everything we wanted in terms of help”. Second,
seven couples felt unsupported by screening centers after the
diagnosis as they lacked information on care service centers,
helplines, and good practices. As Fiona and Luke explain:
“Fiona: Inform parents about best practices for autism and
what works.[…] Luke: It is necessary to find a way to guide
the parents after the diagnosis, if professionals find that they
are in a condition to accept or quickly assimilate the news,
then why not give them the information directly? Otherwise,
leave the door open and send them addresses or a manual
by mail to help guide them in the first months so they don’t
waste time”. Finally, parents require more support to deal
with the complicated administrative process of acquiring
care services in France. Patricia and Peter summarize “Patricia: We are told to apply to the MDPH [Departmental Office
for Disabled Persons] but we do not even know what it is,
nor what they do. Despite two years of dealing with them,
I’m still learning about what they can offer parents. Peter:
That’s basically it in a nutshell”. The MDPH is a specific
government office in France that parents must apply to every
two years via a complicated administrative process to access
specialized childcare and financing (Chamack and Bonniau
Overall, eight couples emphasized the importance of
exchanging and networking with other parents of children on the spectrum. First, this helped parents gain useful
knowledge for their child’s care. For example, Elliot went
on “Canadian forums and exchanged with parents who are
much more open. They are already much more advanced. We
then decided to set the things we discussed with them up at
home”. Second, simply talking and exchanging experiences
with other parents was also a source of support. Sophie and
Richard enjoyed going to parental support groups together:
“Richard: What is good is that when both parents are there, it
allows us to see other parents and then to actually be able to
speak in front of each other whilst in front of other parents,
sharing our experiences.[…] Sophie: It’s true that yes it felt
good to be able to talk with other people who were going
through the same thing as us”.
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
Theme 3: Adaptation
All couples discussed how daily life changed and how they
adapted to their child’s autism diagnosis. These adaptations
emerged among three sub-themes, as participants described
(1) individual, (2) coparenting, and (3) couple adaptations.
Parents used individual strategies to adapt to the autism
diagnosis. Among all couples, one partner sought information and solutions by reading about autism in books or on
the internet. Patrick and Linda explained how “Linda: We
always try to keep our heads high and move forward. It’s
our state of mind, that’s why we didn’t break down. We ask
ourselves what we can do to help him, who are the people
who can help him, in fact we are still the same now.[…]
Patrick: we didn’t wait for solutions, we went looking for
them”. Among three of these couples, fathers sought information whereas mothers avoided reading as it was a source
of distress. After the diagnosis, seven couples spoke about
their different psychological processes to accept their child’s
autism. For Andrea and David: “Andrea: I have read a lot,
met other parents. So I have a better understanding now
about autism. I accept it. David: I also think that I accept
it better now, I’m no longer looking for quick fixes that
probably don’t exist”. Parents also adapted by comparing
themselves to other families in worse situations, which four
couples called “putting it into perspective”. For example,
Val and Alice: “Val: Put it into perspective, don’t get overwhelmed, it’s no use anyway, it will not help. Alice: We put
it into perspective…It also could have been worse. He could
have been sick, he could have passed away. His thing is that
he is autistic”. Parents within four couples also expressed
difficulty adapting to no longer having any time alone for
respite since the diagnosis. For Katie and Harry: “Harry:
We don’t have any time, any time to just relax.[…] Katie:
We run out of time, I don’t have any time just on my own”.
Coparenting relationships changed after the diagnosis
regarding childcare and shared parenting choices. First,
seven couples revealed how important it was for them to
agree on parenting strategies and autism methods. Different opinions on how to deal with the child’s behavior was a
source of conflict. As Linda and Patrick shared: “Linda: we
don’t have any issues concerning our child’s care, you are
always with me. You have to be on the same page for the
child’s care, that really helps, because if I had to fight with
a partner who didn’t have the same vision, that would be an
obstacle. I don’t think our relationship would last. Patrick:
Yes.[…] To have the same point of view when we make a
choice it’s because we spoke about it and decided it was best
for our child. You both have to go in the same direction”.
Four couples also changed their parenting priorities after the
diagnosis. They accepted their child’s differences instead of
demanding the child to behave in a certain way. For example,
Alice: “We ask less of him than we did before. So, he is less
tense and we are less tense too. Since we’re less annoyed,
he’s less annoyed too. Because we expect less from him, he
reacts better and suddenly we all live better lives”. Second,
all couples changed the way they divided childcare after the
diagnosis to accommodate the child’s specialized care. They
described their coparenting relationship as “complementary”
with each parent having a specific role. The division of parenting roles happened naturally without any communication.
Parents would spontaneously help each other in their specific
role if they saw the other parent in difficulty. Robert and
Beth summarize “Robert: We never discussed it officially,
but what generally happens is that she takes more care of the
house. Making the children’s beds, cleaning tasks, all that.
And often, I bathe the children, I put them to bed, and we
share it like that. Our routine is a bit like that, we each have
our tasks. Beth: Yes, very natural, we just settled into that”.
Couples spoke about how their relationships were affected
by the diagnosis. The quality of couples’ relationships before
having children seemed to influence the way they adapted to
the diagnosis. Four couples who described their relationship
as always being solid developed an even closer relationship
after the diagnosis. Fiona and Luke stated, “Fiona: Even
before his autism, we were always a tightly knit couple, we
have no problems and we get along very well, his autism
has only strengthened our bond. Luke: Yes, I insist on communication and of course trust. He is the child of two partners, so it is natural and normal we both take care of him.
Each person has their own way, we both do our best and
we never criticize each other but instead try to understand
the other person”. Two high-quality couple relationships
experienced conflict over different views about their child’s
first signs during numerous months. The diagnosis helped
them become closer as they managed to find a common
accord. However, for Beth and Robert who had relationship
difficulties for many years, they maintained their different
views after the diagnosis, which created even more tension
between them: “Beth: I don’t think it was our son’s autism
that distanced us, it has nothing to do with his autism, I think
there was already a distance between us before he arrived,
the autism just added to it. Robert: Our relationship was
already a little distant, so it didn’t help, it didn’t bring us
closer, it could have brought us closer but it didn’t bring us
closer. Because we didn’t have the same vision at all, and we
couldn’t understand each other’s perspectives, including that
of our child’s education.”. Couples found it difficult to find
time together, especially if the grandparents lived far away
or the child had sleeping difficulties. For example, Sophie
and Richard: “Sophie: For the moment our relationship has
been put to the side. There is only us two, the grandparents
live far away so it’s complicated for the moment. Richard:
It’s true that we go out a lot less, we see a lot less people, I
think all parents generally have less time together. But it is
true that managing the added specialized childcare monopolizes a lot of our time in terms of organization”. Good communication between partners was very important for seven
couples. For Hayley and Elliot: “Elliot: We have always
spoken about it, and neither tried to tell the other what to
do or that it’s not that bad. Straight away we spoke about it
and tried to be together to confront the autism.[…] Hayley:
There is solidarity, exchanges, we communicate, and when
we do not communicate we feel and we take initiatives. We
really exchange a lot about our fears, doubts, difficulties”.
Three couples avoided talking about some of their worries
to protect each other from negative feelings or because they
did not feel ready to talk. For Patrick: “It is true that when
we are each in our own little bubble, perhaps it’s a form of
respect or we feel the need to leave each other a bit of space.
We leave each other space, wait for the storm to pass, and
wait for a better moment to talk”.
The present study used a qualitative framework to gain
knowledge and understanding about parenting couples’
daily lives after their child’s autism diagnosis. Ten couples
discussed in detail their experiences across three domains:
their emotional response, a need for external support, and
the way they adapted to the diagnosis.
Couples responded differently to the diagnosis with some
describing the final diagnosis as a relief given the delays
in the screening process, while others experienced it as a
shock. The emotional reaction to the diagnosis can be a part
of a process that starts before the assessment period at the
screening center (Gentles et al. 2019, 2020; Mulligan et al.
2012). As found in this study, the majority of parents already
started a progressive process before the official diagnosis.
Hence, it is possible that some parents have already accepted
and adapted to their child’s autism before attending the
screening process. Whereas other parents may struggle to
adapt emotionally during this process for multiple reasons,
such as denial, accepting their child has an uncertain future,
navigating interventions alone, redefining their parental role
and responsibilities, as well as letting go of expectations
they had for their child (Gentles et al. 2019). These parents
will not be as ready to engage in their child’s care. This
highlights the need to rethink about ways to support parents,
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
especially as most parental support is proposed after an
official diagnosis. However, in countries like France where
parents can wait for up to three years for an official diagnosis, it seems important to think of ways we can accompany
parents as soon as they express their first concerns (Haute
Autorité de Santé 2018). Overall, these findings emphasize
the necessity of adapting support to the specific needs of
each parenting couple from the child’s first signs of autism.
Especially as partners do not always experience the same
emotional response, which can strain a couple’s relationship
(Hock et al. 2012). In the current study, reactions varied
among couples. Some parenting partners presented opposite reactions (one parent responded positively and another
negatively) whereas other couples experienced the same
positive or negative response. Additionally, the lack of postdiagnostic support and information provided by specialized
autism screening centers was a major issue and source of
stress for couples in this study. Parents require information
tailored to their needs as they struggle to obtain services
and support during this period (Crane et al. 2016; Carlsson
et al. 2016). Navigating interventions is an added burden that
creates stress and diminishes parents’ resources by reducing
their finances, time, and energy (Gentles et al. 2019). Parents
would benefit from further consultations with professionals
after the diagnosis to accompany them with the administrative process of obtaining care, as well as to provide emotional support to promote their well-being (Boshoff et al.
2019; Gentles et al. 2019; Yi et al. 2019). In recent years,
France has started proposing parental guidance programs
after a diagnosis, such as Beyond ASD, ETAP, and ABC
programs (Sankey et al. 2019). Despite this progress, centers encounter certain obstacles implementing these types of
programs. A qualitative study showed that these programs
require more support and motivation from the professionals to recruit parents, find time and space, as well as train
practitioners (Decroocq et al. 2020). French centers need to
include parental guidance as an inherent part of their practice and standards to provide necessary resources for implementation (Decroocq et al. 2020).
In the current study, couples highlighted how physically
and mentally exhausted they were daily. They found it difficult to find time for themselves individually or together,
especially when the child had sleeping difficulties. Indeed,
Harper et al.’s study (2013) shows that more respite is associated with higher marital quality and reduced stress among
a hundred couples raising a child on the spectrum. However,
they did not explore whether parents’ marital quality was
impacted differently if parents spent respite time together or
alone. Participants in the current study only trusted grandparents to babysit their child on the spectrum, which allowed
couples to spend time together and provided respite. They
expressed how difficult daily life was when grandparents
did not babysit because they lived at a distance or were
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
unsupportive. Research has shown how a good quality relationship with grandparents can provide a better quality of
life and less stress (Derguy et al. 2017). Overall, grandparents are considered an essential source of support for parenting couples (Hastings 1997; Hillman et al. 2017). However,
grandparents experiencing difficulty accepting the diagnosis
or interacting with their grandchild are not always supportive
(Downes and Cappe 2019). Professionals could indirectly
support parents by being attentive to grandparents’ reactions
after the diagnosis and offering guidance to those struggling
to adjust to their grandchild’s autism.
After the diagnosis, many couples changed their parenting priorities by changing their expectations regarding
their child. They no longer expected their child to behave a
certain way, but instead adapted to their child’s individual
needs and behaviors. Previous research suggests that this
may be linked to parents having a resolved reaction to
the diagnosis (Poslawsky et al. 2014; Wachtel and Carter
2008). Resolution of the diagnosis occurs when parents
come to terms with their child’s autism by accepting their
new situation and its implications. Resolved parents are
more sensitive and support their child’s needs by adapting routines as well as having a better understanding of
the child’s behaviors (Poslawsky et al. 2014; Wachtel and
Carter 2008). Resolution may be different between mothers and fathers at different times. For example, 36 months
after a diagnosis, fathers’ resolution levels remain stable
whereas mothers’ resolution levels increase to become
similar to fathers’ levels (Yirmiya et al. 2015). Indeed, in
the present study, couples spoke about how they processed
and accepted the diagnosis individually. Some parents
also used social downward comparisons to assimilate the
diagnosis by comparing themselves with worse situations
(Hirsch and Paquin 2019).
The coparenting relationship became a priority after
the autism diagnosis as parents focused all their efforts
on reorganizing and sharing parenting roles to manage
specialized childcare that became available after the official diagnosis. This corresponds to the “tag team” phase
where parents’ relationships become focused on parenting to meet their child’s needs and the couples’ intimate
relationship is no longer considered a priority (Hock
et al. 2012). Prioritizing the coparenting relationship and
sharing parenting tasks helps parents of children on the
spectrum become resilient and strengthens their parenting bond (Bayat 2007; Hock et al. 2012; Marciano et al.
2015). In the present study, all couples presented complementary coparenting relationships as different tasks were
shared between parents. They divided parenting responsibilities spontaneously depending on partners’ availability
and natural affinity with each task. Even if one partner
spent more time at work, they were still involved with
childcare for a certain percentage of time and did not necessarily accomplish the same parenting tasks as the other
partner. This is an important finding for intervention, as
work commitments leave the other parent with less time
to attend appointments and parent training programs at
their child’s specialized care center (Bearss et al. 2015;
Rivard et al. 2014). This parent misses out on professional
guidance that could help them develop certain techniques
to interact with their child. Future research should explore
ways to involve both parents even if one parent cannot
attend by developing alternative programs and modes of
delivery. For example, father involvement remains complicated, but certain telemedicine programs are offering
promising results (Arnaud et al. 2019; Heitzman-Powell
et al. 2014; Rankin et al. 2019). Exploring these options
is important as parent-mediated interventions among the
general population have shown stronger effects on child
and parenting behaviors when both parents participate
(Lundahl et al. 2008).
Adding to previous research, different opinions
between parents about parenting styles and methods
were a source of tension for couples (Harper et al. 2013;
Lickenbrock et al. 2011). An interesting finding in the
current study is that couples’ relationship quality before
having a child influenced how couples reacted to childrearing disagreements after the autism diagnosis. In this
study, couples who described their relationship as solid
before the diagnosis became closer after the diagnosis,
even when there was child-rearing disagreement. However, the couple with a history of relationship difficulties that existed before the child’s birth became more
distant after the diagnosis. Among the wider population,
a high level of relationship quality before birth has been
linked to more coparenting support after birth (Le et al.
2016; Van Egeren 2004). A specific factor that may be
associated with this occurrence could be dyadic coping. Indeed, dyadic coping can limit the negative consequences of stress on a couple’s relationship and impact
the coparenting relationship (Bodenmann et al. 2010;
Zemp et al. 2017). For example, among mothers of neurotypical children, an increase in dyadic coping over a
year predicts less coparenting conflict (Zemp et al. 2017).
Another important element for parents was communication. However, some parents in this sample avoided talking about negative emotions. One theory is that this could
be due to an avoidant attachment style among parents,
as parents do not seek emotional support and just focus
on the practicalities of raising their child on the autism
spectrum (Kayser and Revenson 2016; Mikulincer and
Shaver 2012).
Journal of Autism and Developmental Disorders (2021) 51:2697–2710
Practice Implications
This research contributes to the existing literature by adding
new insights into couples’ experiences when raising a young
child on the autism spectrum and providing recommendations for clinical practice (see Box 1).
Firstly, the findings of this study corroborate suggestions
provided by Gentles et al. (2020) of adapting the required
amount of parental engagement or the information provided
to each parent’s level of understanding of autism and emotional experience. Some parents may need time and emotional support to adapt to their child’s autism before they
can engage in their child’s intervention (Gentles et al. 2019,
2020). Indeed, for these parents, “insisting on high levels
of engagement, such as by providing extensive verbal or
written information at diagnosis, may have unintended psychological consequences and yield resistant or unmotivated
responses” (Gentles et al. 2020, p. 480). Whereas, other parents may not require nor want psychological support as they
have already adapted to their current situation. Instead, these
parents wish for immediate information and help to navigate
interventions. Our study adds further knowledge about the
reaction to the diagnosis by showing that parenting partners
are sometimes at different stages of this process. This can be
difficult for partners dealing with the other parent’s denial or
grief. Overall, practitioners need to be sensitive to couples’
profiles and individual internal processes to be able to have
a flexible approach for providing post-diagnostic information and support. Any issues need to be addressed by practitioners at an early stage to prevent barriers to the child’s
intervention. Especially as this can cause feelings of regret
among parents at a later date if they feel they are responsible for “wasting time” regarding their child’s access to care
(Gentles et al. 2020). In this study, many parents felt unsupported by screening centers for navigating intervention. The
information provided needs to be tailored to each family
with follow-ups to check if parents have managed to access
specific care services and best practices. Specific to France,
parents also need help to complete administrative processes,
such as the MDPH, which are very complicated and a cause
of a lot of stress.
Regarding parents’ relationships, practitioners should
acknowledge that parents can have complementary roles in
childcare and may participate in the same or different parenting tasks at various times. Practitioners should appraise
couples’ relationship quality as this could influence how parenting partners transmit information about their child’s care
to each other. It is possible that these parents experience difficulty sharing information or techniques provided by professionals. It is also important to observe parents’ level of childrearing agreement, as any disagreement can be a source of
tension and may affect the child’s care. Both parents could
benefit from consultations at care centers together or separately, as well as offering extra support via couples or coparenting therapy. Given that some parents prioritize their child
before themselves and their relationship at certain stages of
their clinical journey (Gentles et al. 2019, 2020; Hock et al.
2012; May et al. 2017), these parents may prefer to focus
on childcare and their coparenting relationship rather than
their intimate relationship at that time. This study suggests
that parent groups may also be a good option for offering
support and opportunities for communication between couples. Finally, the relationship with grandparents can play a
major role in providing respite, as parents do not seem to
trust anybody else to babysit when their child is young and
non-verbal. Relationships with grandparents were a source
of strain when parents perceived their reactions as negative
and unsupportive. Practitioners need to be more attentive to
the impact of grandparents’ reactions on parents’ daily lives
and provide support whe…
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