Phase 2: Caring for a child with complex needs

Phase 2 of the research program explores in detail the daily care provided by parents of children with complex needs. An overview of the studies comprising Phase 2 of the research program is presented here, with the full study details contained in Chapters 5, 6 and 7. The main aspect of Phase 2 is a detailed description of the daily time use of 10 mothers of children with complex needs across two 24-hour periods, based on an adapted version of the Australian Time Use Survey that has been recoded to enable a more in depth exploration of parental time use. Photo interviews with a mother of a

48 child with ASD and a mother of a child with Rett syndrome provides contextual information to support the time use findings. The meaning and enjoyment of child care related tasks described in the time use study is explored in a pilot study using the Occupational Questionnaire (Msall, Lyon, & Gray, 2004).

2.2.2.1 Study 3: Recoding the Australian Time Use Survey

Study 3 is a small descriptive study that underpinned the development of a framework of in-depth childcare related codes able to be used when analysing data collected using the ATUS. The broad categories and sub codes of the ATUS were retained, but additional layers of coding and activities specific to the care of children with complex needs were developed to enable greater detail to be obtained. These additional coding layers were incorporated into the coding structure of the 2006 ATUS (Australian Bureau of Statistics, 2008) and formed the basis for the detailed analysis undertaken in the time use study (Chapter 6). The childcare related codes developed during the recoding study can be found in Appendix 8.

The initial version of the childcare related codes was developed based on descriptions of childcare related tasks contained in relevant literature in the area. Validation of the codes and the development of the final version was based on information obtained through interviews with four allied health professionals. These allied health professionals had significant experience working with children with complex needs and their families.

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2.2.2.2 Study 4: Time use study

The time use study addresses three main questions:

1) How much time do parents of children with complex needs spend in childcare related activities in a 24 hour period?

2) What types of childcare related activities are undertaken by parents of children with complex needs?

3) How does the time parents spend in childcare related activities for the child with complex needs compare to the type of activities and amount of time spent in childcare related activities for other children in the family?

A free form 24-hour time use diary adapted from the Australian Time Use Survey (ATUS) (Australian Bureau of Statistics, 2008) was the primary data collection tool. Time use diaries are widely accepted as being the most valid measurement instrument to record daily time use (Geurts & De Ree, 1993; Juster & Stafford, 1991). They produce data consistent with real behaviour for most activities, and are not subject to the misunderstandings, recall problems, altering tendencies or overestimation that may occur with other methods (Neimi, 1993). Self-reported time use diaries produce reliable & replicable results with correlation coefficients between 0.85 and 0.95 (Robinson 1999 cited in Crowe & Michael 2011). Childcare activities recorded using time diaries have a reliability percentage of 74% (Juster & Stafford, 1991).

Although time use diaries enable the collection of highly detailed data, the key difficulty with their use is the time and effort required by respondents to complete them, particularly when the respondent is an informal caregiver (van den Berg & Spauwen, 2006). It has been suggested that completing a free form time use diary – where participants write down all of their activities during a specified period of time (van den Berg & Spauwen, 2006) is too onerous for parents who are already busy caring for their child with complex needs (Crettenden, 2008; Gevir, Goldstand, Weintraub, & Parush, 2006; Padeliadu, 1998). Lack of time and the need to keep a diary were reasons given

50 by parents for choosing not to participate in a randomised controlled trial aimed at reducing childhood obesity (Barratt, Levickis, Naughton, Gerner, & Gibbons, 2013). The parental burden associated with completing a free form time use diary has led some researchers to reduce the burden by using a pre coded time use diary in research with parents of children with complex needs (Crettenden, 2008; Johnson & Deitz, 1985). Parents find the use of a pre coded diary acceptable with regard to ease of use and length of time taken to complete (Thomas, Hunt, Hurley, Robertson, & Carter, 2011). The limitation with pre-coding however, is the restriction this places on the respondent, all activities having to fit within the preordained codes. Detail regarding the specific tasks, for example healthcare related activities, that parents are undertaking is also lost. The importance of obtaining this information and the need to obtain detailed information regarding the type and range of child related activities undertaken by parents were the key reasons for using a free form diary divided into small time blocks, while acknowledging the burden a free form diary in five minute time blocks places on parents.

The participants all worked within the framework of the diary structure, although some participants provided considerably more detail regarding the activities in which they were engaged and who it was for or with. Unlike the usual approach to questionnaire or survey reporting, where no mention is made of comments scribbled on the survey instrument (Feilzer, 2010), particular attention was paid to additional comments (outside of the required information) that the mothers added to their time use surveys. Feilzer (2010) has described the value of including extra, unsolicited information obtained from comments that participants added to a public opinion survey in a study exploring the natural effect of providing crime information. The inclusion of the comments as additional qualitative data enabled the researchers to reflect on the limitations of the survey questions and qualify simplistic responses to very complex issues (Feilzer, 2010). Taking note of the additional comments added by the mothers to the time use questionnaires similarly helped to clarify responses that otherwise had the potential to be misinterpreted and provided the opportunity to obtain explanatory qualitative data by following up on key comments through phone calls or letters.

51 Additional information obtained through this process was used at the individual level when coding the time use diaries and provided the stimulus for lines of enquiry explored through other aspects of the research program.

Additional questionnaires used in time use study

In addition to the time use diaries, the mothers completed a demographic questionnaire designed for the study; the Time Crunch Scale (Robinson 1991); Child’s Challenging Behaviour Scale (Bourke-Taylor, Law, Howie, & Pallant, 2010); and the Amount of Assistance Questionnaire (Msall, 1996). These questionnaires can be found in Appendices 3 to 7 and are described in detail in Chapter 6, sections 6.2.5.1 to 6.2.5.5.

2.2.2.3 Study 5: Meaningfulness attached to child care related activities

Study 5 is a pilot study incorporating data obtained from the time use diaries (Chapter 3). The primary aim of the study was to explore the meaning that parents attached to the child related activities that they undertook on a daily basis. There were three main research questions:

1) How do parents of children with complex needs rate their competence to undertake child care related activities, particularly healthcare related tasks? 2) How do parents of children with complex needs rate the importance of child care

related activities?

3) What level of enjoyment do parents of children with complex needs attach to child care related activities?

The data collection tool for the pilot study was the Occupational Questionnaire, a self- report instrument measuring occupation with a focus on activity and volition (Smith, Kielhofner, & Hawkins Watts, 1986). The Occupational Questionnaire has previously been used with elderly persons and adults with rheumatoid arthritis and multiple sclerosis (Cahill, Connolly, & Stapleton, 2010; Forhan & Backman, 2010; Niva & Skär, 2006) but no reliability or validity information is available. No studies using the full

52 version of the tool with parents of children with complex needs was located. An adaptation of the Occupational Questionnaire was used with parents of children with disabilities and ADHD to assess meaningfulness of tasks but this was related only to the broad category activities with their children (Gevir et al., 2006).