[001004845]

MSc Child and Adolescent Psychology

PSYC 1107

ADVANCED Research Methods for Child development

M01

Coursework title: Essay

Coursework Deadline: 9th January 2019

Module Leader: Dr Rebecca Smith

Word Count: (xxxx)

Quality of life among mother of autistic children: A cross cultural Mixed Methods Study or a

qualitative and quantitative approach

Background and rationale

“Quality of life (QoL) is defined as individuals' perceptions of their position in life in the

context of the culture and value systems in which they live and in relation to their goals,

expectations, standards and concerns. It is a broad ranging concept affected in a complex

way by the person's physical health, psychological state, level of independence, social

relationships, personal beliefs and their relationship to salient features of their

environment.” (World Health Organization [WHO], 1997, p.1).

The current problem is how much the children’s developmental disorder affects the mother’s

quality of life. The purpose of the current study is to get a more complete understanding of

quality of life of mothers of autistic children. The literature review showed a gap in cross-

cultural studies on the topic of quality of life among parents of children with ASD, there are no

studies comparing this concept across different cultures.

The literature review also shows that many of the conducted studies to this day on the topic of

quality of life among parents of autistic children focus on the experiences dealing with the

children’s disorder. Therefore, the main focus on the current study is not focused on ASD, but

how mothers deal with their daily struggles, what they do to make themselves feel better, how

they try to have better life, what would help improve their quality of life in spite of having a

child with ASD.

“Autism spectrum disorder (ASD) is characterized by persistent deficits in the ability to

initiate and to sustain reciprocal social interaction and social communication, and by a
 range of restricted, repetitive, and inflexible patterns of behaviour and interests. The

onset of the disorder occurs during the developmental period, typically in early

childhood, but symptoms may not become fully manifest until later, when social demands

exceed limited capacities. Deficits are sufficiently severe to cause impairment in

personal, family, social, educational, occupational or other important areas of functioning

and are usually a pervasive feature of the individual’s functioning observable in all

settings, although they may vary according to social, educational, or other context.

Individuals along the spectrum exhibit a full range of intellectual functioning and

language abilities.” (International Classification of Diseases 11th Revision (ICD-11),

2018, p.).

ASD is a spectrum-based developmental disorder that presents a wide range of manifestations

and symptoms, affecting social interaction and communication, as well as potentially resulting in

stereotyped behaviors (American Psychiatric Association, 2013).

To be a parent to a child with ASD is an emotional, social, financial and physical challenge.

Many of the conducted studies show that mothers of children with ASD have lower quality of

life and higher stress levels than mothers of children with normal development, Down syndrome,

fragile X syndrome and cerebral palsy. From my literature review, there are no cross-cultural

studies on this topic therefore it is interesting to see how QoL is perceived from two different

points of view. “As parents, they are especially affected by their child's disability and its threat to

culturally sanctioned ideas about family normality and their role as caregivers for their children.”

(Gray, 2001).

The concept of QoL is multidimensional construct that includes health and non-health related

domains. (Schalock, Verdugo, Bonham, Fantova, & Van Loon, (2008) propose a model for
assessing QoL in the context of disabilities that has eight domains: personal development, self-

determination, interpersonal relations, social inclusion, rights, emotional well-being, physical

well-being and material well-being.

Aims and approach

The quantitative data shows how mothers score their quality of life having an autistic child, and

qualitative data shows how they interpret the concept of quality of life, what does it mean to

them, their attitudes and if there are any differences between collectivistic and individualistic

societies. The research questions are 1. To what extend do QoL quantitative results agree with

mother’s perception of QoL? 2. It focuses on the experience of being a mother of a child with

ASD and their ideas, opinions and suggestions how to cope with it. In the interest of time and

since it is a cross cultural study the data would be collected concurrently in one phase. In order to

understand the research problem, the best this study is following the convergent parallel design

or triangulation “to obtain different but complementary data” (Morse, (1991) cited in Cresswell

& Plano Clark, 2011, p. 77).

Qualitative part

The sample of this study are mothers of autistic children aged 13 to 18 (N=6-8). Participants

would be recruited through advertises, associations for autism and ASD, associations for parents

of children with ASD and it would be volunteer based. Those interested in participating were

asked to read the information leaflet before signing and returning the consent forms. Exclusion

criteria is a recent change in the nuclear family’s life such as divorce, death of family member.

All of them would complete a demographics questionnaire including education level, monthly

income and how many children they have. The participants would be asked to state the severity

of ASD and functionality of their children.

Navot, Jorgenson, Vander Stoep, Toth, & Webb, (2016) found that mothers have tendencies to

blame themselves for their children’s problems and that the child’s illness and disability

threatens their identity. In a study by Weiss, Cappadocia, MacMullin, Viecili, & Lunsky, (2012)

a participant shared “I feel like I’m an Atlas holding up the world … I am holding the family

together and I need a break, but I can’t.”.

”””” The aim of the study is to identify how to improve the quality of life. The purpose of this

cross-cultural study is to explore how mother from individualistic driven society (England) and

collectivistic society (Macedonia) perceive QoL.

None of the previous conducted studies in QoL of parents od children with ASD show that these

parents have good quality of life. The findings that their QoL is worse than the parents of normal

developed children have been reported multiple times.

Qualitative part would consist of previously scheduled in-depth interviews with open-ended

questions. The topic list included perceived quality of life, what does that mean to them and how

they cope on daily bases. Questions were formed with consultations from previous studies and a

pilot interview with a mother that was not included in the analysis (Petalas, Hastings, Nash,

Reilly, & Dowey, 2012) Examples of the interview questions include: “What do you understand

by quality of life?”, “How do you cope with daily life struggles having a child with ASD?”,

“What do you do to make it better?”. Probes are included to get better understanding of the

participants answers.

Participants would be recorded by audio recorder using semi-structured interview guides after

getting permission and written signed consent. The interviews would be transcribed using

verbatim, literal approach, then anonymized by removing their names and changing the names of

places and then analyzed. Semi-structured interviews would be conducted because that allows
the researcher to follow the participant’s lead. It would also help to identify relevant themes and

topics that might not be identified in more structured interviews. If the situation requires, for

example an appearance of difficulties or problems, adjustments may need to be made to the style

of questioning.

Collected data would be analyzed using interpretative phenomenology approach because the aim

is to use the experiences from mothers’ point of view to understand quality of life. Interpretative

phenomenological analysis (IPA) views the participant as an expert in their own personal

experience and it recognizes the preconceptions of the researcher in the interpretative process. To

examine the data, would be used principles from phenomenology, hermeneutics and ideography.

The transcript would be read, re-read and emerging themes would be identified using an

inductive or bottom-up approach. After that clusters would be formed would be checked if there

are any connections between themes. Field notes would be also taken. The same procedure

would be applied for every transcript. External qualitative researchers would make credibility

checks for the transcripts in both languages to minimize the bias.

Qualitative data would be used as in a complementary way to enrich the quantitative date and to

complete the understanding of the concept of quality of life in this population.

Quantitative part

For the quantitative part of the study there would be at least 50 mothers of autistic children aged

13 to 18 from each country. The participants would be informed about the purposes of the study

and that is anonymous through pamphlets and additional information online. The reasoning

behind choosing this sample is that these mothers had time to get used to living with the

diagnosis and to establish a routine after learning about their children’s diagnosis.

The quantitative measurement could be filled online or on paper form.

Demographic questionnaire collects data on age, place of residence, confirmation of formal

diagnosis, age at time of diagnosis, year of diagnosis, income, level of education, employment

status, family constellation (married, separated/divorced or single), the number of children they

have, child’s age and severity level of ASD.

The Quality of Life in Autism Questionnaire (QoLA) by Eapen, Črnčec, Walter, & Tay, (2014)

would be used for the assessment of QoL of this sample as it designed for parents of autistic

children aged 2 to 18 years. QoLA has two subscales, Part A and Part B. Parents are asked to rate

the items based on their experiences over the preceding four weeks.

Part A consists of 28 items that measure parents’ overall perception of their QoL. The items are

measured on five points Likert scale that ranges from 1 to 5, where 1 = not very much, 2 =

slightly, 3 = moderately or N/A, 4 = quite a bit and 5 = very much. The scores range from 28 to

140, where higher scores indicate greater perceived QoL. Items 2, 4, 17 and 22, are reverse

scored. Internal consistency coefficient for Part A is α = 0.94.

Part B or impact of ASD symptoms assesses parents’ perception of how problematic their child’s

ASD difficulties are for them. Parents are asked to rate 20 difficulties on how problematic they

have been for them same as the previous subscale, on a Likert type five points scale where 5 =

not much of a problem, 4 = slight problem, 3 = moderate problem or N/A, 2 = quite a bit of a

problem and 1 = very much of a problem. The scores range from 20 to 100, where higher scores

indicate less problems to parents. Cronbah’s α for part B is 0.92.

The potential QoLA score ranges from 48 to 240 and can be computed for overall comparisons.

However, parts A and B, reflect separate subscales and are intended to be scored separately. The

authors of this questionnaire interestingly have embedded a qualitative part in the questionnaire
presented with fields about commentary for each item and writing a question “If there is

anything to add” at the end of Part B but provide no solution how to interpret that data.

For the purposes of this study the QoLA questionnaire is translated by a bilingual psychologist

with the permission of the authors. (Both versions of the test could be found in the Apendix 1).

The intent here is to see if there any differences how mothers evaluate their quality of life and the

role of demographic variables in the quality of life.

A t-test would be used to see if there are group differences and simple correlation measure to see

the relationship between Part A and Part B of the questionnaire. Previous studies show that the

child’s age, ASD severity, behavioral problems…. Affect the QoL (Baghdadli, Pry, Michelon, &

Rattaz, 2014; Brobst, Clopton, & Hendrick, 2009; Kousha, Attar, & Shoar, 2016).

Multiple hierarchical regression analysis would be applied to see how much of the variance is on

the demographic information such as income, level of education, employment status, family

constellation (married, separated/divorced or single), the number of children they have, child’s

age and severity level of ASD. For this part of the study is viewed through pragmatic paradigm.

Critical evaluation

The current study has several limitations. Some of the limitations are that the groups from both

countries are not equal and the QoL measure and child’s ASD severity are self-reported. Both

samples from quantitative and qualitative part of the study are small and that is a risk to external

validity, therefore generalizations cannot be made. Another limitation is that all participants are

volunteers. They offered perspectives on their individual experiences, which also affects making

generalization. Another limitation is that all of the participants are mothers, and other caregivers

are omitted.
These results could only give an idea, a mere suggestion how to improve lives of caregivers of

children with ASD. Since the choice of countries is made arbitrarily, perhaps choosing different

countries, could give different results.

This current study would help forming the picture of how having a child with ASD affects the

parents, siblings and the family life through mother’s perspective. The findings in this study

expand the current literature on caregivers of children with ASD, caregivers’ quality of life, and

family quality of life. Measurements of maternal QoL are important for helping not just mothers,

but caregivers too, to improve their well-being and thus be better equipped to help their children.

Policy makers, researchers, healthcare providers might also benefit from this study. Findings in

this research study using data gathered from QoLA and interviews could be used as tools to

refine the current social services that are being provided to this particular group of people. It

could be beneficial for the society too, as a positive social change. And most importantly it could

help the children with ASD to receive better care.

Во ова истражување целта е да се воспостави моменталниот квалитет на живот, опишан

квантитативно, со бројка, како појдовна цел, и од таа појдовна точка, за секоја индивидуа

посебно, да се опиши, квалитативно и како да се подобри моменталната состојба.

Appendix A:

Appendix B:

Questions:

1. What does quality of life mean to you?

2. How would you describe your quality of life?

3. How do you see yourself?

4. Do you invite extended family members and friends at your home?

5. Do you have any time for yourself?”, How do you spend your free time?

6. “How do you cope with daily life struggles having a child with ASD?”,

7. “What do you do to make it/your life better?

8. What do you like about your life?

9. Is there anything you would like to change?

10. How can others help you?

11. What did you learn from your child?

References:

Cresswell, J. W., & Plano Clark, V. L. (2011). Designing and Conducting Mixed Methods

Research-2nd ed. USA: SAGE Publications, Inc.

Howitt, D. (2016). Introduction to Qualitative Research Methods in Psychology (3rd ed.).

Harlow, England: Pearson.

Howitt, D., & Cramer, D. (2014). Introduction to Research Methods in Psychology (Fourth

edition). UK: Pearson.