3.4.1 Methodological approaches of South African research studies on parental experiences of ASD
The methodological approaches of the South African studies on parental experiences of ASD included semi-structured interviews, self report questionnaires and surveys. Sample sizes ranged from six participants to 180, with eight studies reporting less than 15 participants. The majority of the studies were qualitative with smaller sample sizes while the few quantitative studies had larger sample sizes.
Of note, many studies reported limitations regarding sample size and the bias of convenience sampling. Some studies also reported the possibility of limited generalisability due to the makeup of their sample population. One study reported that due to the demographics of their sample (upper, middle socioeconomic brackets) their results were not necessarily representation of the entire population.
The majority of the qualitative studies had smaller sample sizes however reported that the in- depth understanding of each case provided insight that contributed to a growing understanding.
Smaller sample sizes may be due to the nature of parental experiences as many parents report being extremely busy, fatigued and thus unable to spare time to participate in research. Some studies attempted to ease this by using electronic questionnaires or surveys however this may have been at the cost of face to face interaction despite possibly being easier in relation to the demands on parents. Thus, there is a need to assess the advantages and disadvantages of each approach.
In the context of parents of children with ASD, although electronic surveys may be easier to conduct, the opportunity to build rapport and engage with the participant on a deeper level
65 would likely be lost. This rapport may play a crucial role in providing the necessary environment for parents to respond more openly and honestly regarding experiences that may be difficult to verbalise.
In the current study, the benefit of a more in-depth engagement was prioritised over greater sample sizes or the convenience of electronic surveys. The role of rapport was viewed as essential in this study with the understanding that parents required a held, secure interaction in order to honestly respond to questions.
3.4.2 Participant selection
The study aims were to explore and understand the psychosocial difficulties of parents with children who have ASD. For this reason, purposive sampling was used for participant selection.
Non-random sampling was used as the study required a specific population group that have been through this particular experience. Participants were recruited via a gatekeeper who distributed an invite to participate to parents linked to an ASD support group.
The literature suggests that a minimum of three to five transcripts is necessary for a thematic analysis and in order to identify themes. Thus, this study aimed to accept at least 4 to 10 participants. The sample selection aimed to be as representative as possible however due to restrictions and the qualitative nature of the study, the findings may be considered representative of the individuals participating in the study.
3.4.3 Sample description
Purposive sampling was used for participant selection.
• Parents with at least one child who has been diagnosed by a medical professional as having ASD.
• Living in the Western Cape, South Africa.
Sample demographics can be seen in Table 3.3 a, while characteristics of the children of the participants can be seen in Table 3.3 b.
66
Table 3.3 a Demographics of sample Part. Gender Marital
status Ethnic/
racial background
HLOE Employment
(self) No. of people in household
No. of children
A F Married;
(2nd marriage)
Caucasian Honours
degree Self-employed 4 4 (1
biological, 3 step-
children) B F Married Caucasian Hotel
Management Diploma
Part time employed, teaches Child B 2 at home
5 3
C F Married Caucasian Uknown Unemployed 2 2
D F Married Caucasian Unknown Unemployed,
Stay-at-home 4 2
E F Married Mixed
ancestry Nurse Employed 4 2
Table 3.3 b Showing characteristics of participants’ children with ASD Part. Child’s
age (yrs)
Child’s age at diagnosis (yrs)
Child’s current diagnosis/
ASD ‘category’
Child’s other
diagnosis/es No. of diagnoses prior to ASD
Diagnoses prior to ASD
A (Child
A) 13 9 “Aspergers” ADHD; “PDA”
(Pathological Demand Avoidance)
2 Sensory
processing disorder;
ADHD B (Child
B1)
22 16 “Aspergers” Dyslexia 1 Dyslexia
(Child B2) 11 3 ASD ADHD 0
C (Child
C) 25 5 “PDD” 0
D (Child
D) 9 4 “Aspergers” 0
E (Child E) 13 ASD
(Severe)
Metabolic syndrome
0 “Mild delay”
67 3.4.4 Data collection
Semi-structured interviews were used as the primary means of data collection in this study.
Semi-structured interviews allowed for greater flexibility and unforeseen information to emerge (Flick, 2009). The parents involved were asked to reflect on the difficulties they have experienced in relation to having a child with ASD. This study recognises that these interviews were based on the subjective experience of each parent however this was acknowledged from the start, as was the reflexive role of the researcher.
Each participant was interviewed once. The interviews lasted approximately forty-five to sixty minutes. In one case, where both parents were present at one point in the interview, questions were presented to them together. Probes were used to explore further when appropriate. As it was understood that many of the participants may have difficulty finding spare time to engage in an interview, participants were interviewed at various locations that suited them. Two participants were interviewed in local coffee shops, one in a public garden and two participants invited the researcher into their homes. Interviews were recorded for ease of reference during the analysis stage.
In order to ensure dependability, participants were contacted where necessary for further clarification during the analysis phase, fulfilling the quality criteria of member checking (Leech
& Onwuegbuzie, 2007).
The participants were given a description of the research study and its objectives, as well as a guide to the process prior to the interviews. The participants were only interviewed once the researcher had their informed consent.
3.4.5 Data Analysis/Interpretation
The study was an exploratory cross-sectional design. The data analysis and interpretation were done using thematic analysis.
Consent was obtained in order to audio-record the semi-structured interviews. The audio recordings were transcribed verbatim in English. The transcriptions were analysed thematically in order to identify commonalties and variances among the responses of participants.
Thematic analysis was used to observe previously unidentified patterns or themes. Once these patterns were identified, the next step involved classifying or encoding the pattern by giving it
68 a label, definition or description. The third major step involved interpreting the pattern (Boyatzis, 1998; Braun & Clarke, 2006).
The researcher read and reread the transcripts in order to immerse herself in and familiarise herself with the data. This provided the opportunity to generate a deeper understanding of the data (Morrow, 2005; Smith & Osborn, 2007).
The data were used to build an understanding of the individual and shared experiences of parents in relation to their child’s ASD in a South African context.
3.4.6 Reflexivity
According to Smith and Osborn (2007), the research process is an interactive and dynamic process. The researcher attempts to gain access to and make sense of the participants subjective world, however this is influenced and often complicated by the researchers own subjective experiences, beliefs and values (Smith & Osborn, 2007; Willig, 2008). It is recognised that this, in combination with the view of the researcher as the primary research instrument or tool, means that the researcher plays a significant role in the manner in which the data are interpreted and understood (Golafshani, 2003; Merriam, 2002). It thus becomes vital that the researcher acknowledges the influence of their role as well as maintaining a reflexive stance towards their personal biases and subjective beliefs (Golafshani, 2003; Merriam, 2002; Willig, 2008).
This study recognises the researcher’s role in the research process and in the description and interpretation of the data, as well as the influence the researcher may have on the findings that emerged. Thus reflexivity is an essential part of the research process. The researcher aimed to apply a reflective approach to her personal involvement and maintain awareness of her personal subjective positions throughout the research process. Engaging in reflexivity encouraged the researcher to use personal reflections to aid in gaining a deeper understanding of the participant’s experiences which availed previously unrealised insights to emerge.