Hearing the quiet voice – the lived experience of older mothers of adults with dual disabilities

Kristin Kelly, Swinburne University:

In my research titled ‘Hearing the quiet voice – the lived experience of older mothers of adults with dual disabilities’, I will examine the daily experiences of mothers who care for their adult children who have an intellectual disability together with a mental illness or autism and associated behavioural support needs. The study will provide opportunities for participants to voice their thoughts, feelings and requirements as carers and will facilitate an understanding of the way these mothers interpret their experiences.

The participants will be mothers aged 60 and over who are the primary carers of an adult child. Each child has a dual diagnosis that includes an intellectual disability and high level behavioural support needs. The research method will include in-depth interviews and solicited diaries because these phenomenological methods of enquiry enable a first-person perspective in which the storyteller’s experience, perception and meaning is central to the process (Chan, Brykczynski, and Malone, 2010; Gill and Liamputtong).

Interviews are considered appropriate for research about social issues and social change (Hesse-Biber, 2007). By using in-depth interviews, I will facilitate the documentation of individual stories and experiences. This approach is recommended for hearing women’s experiences or thoughts that may previously have been unarticulated or kept hidden. In-depth interviews have been identified as a method that can enable the voices of marginalised populations, facilitate the hearing of stories of lived experience and provide opportunities to examine meaning (Hesse-Biber, 2007).

Solicited diaries will allow for daily reflection at a time that is convenient to the carers. Diaries can enable a perspective that might be difficult to obtain using other methods with participants who may be isolated, feel uncomfortable about sensitive subject matter or who have trouble expressing their thoughts in speech. Diary keeping is considered empowering for participants because they can choose how much to write and which stories to tell. The use of diaries in research is also considered helpful in assisting participants to overcome memory difficulties (Aleszewski, 2006). Diaries increase the likelihood that participants will include events that they might otherwise have considered as trivial and they allow the capturing of events close to the time they occur, which enables the understanding of the flow of events across time (Aleszewski, 2006; Milligan, Bingley, and Gattrell). This is particularly pertinent where participants may have difficulties with recall because of their own ageing or if they are busy or stressed by their daily care role. Diary recording can allow an in-depth understanding of the feelings, experiences, thoughts and observations of study participants and the method is considered useful for research with hard-to-reach populations and about sensitive issues (Gill and Liamputtong; Hesse-Bibber and Leavy, 2006).

Solicited diaries will be used in conjunction with in-depth interviews because diaries are best suited as a means of complementing other approaches and methods. Some participants may be more skilled at writing than others and the use of additional methods reduces the risk of bias that may be associated with self-censored stories when the participants can choose what to write (Alaszewski, 2006; Milligan, Bingley, and Gattrell).

Additional references

Alaszewski, A. (2006). Using diaries for social research. Thousand Oaks, CA: Sage.

Chan, G. K., Brykczynski, K. A. and Malone, R. E. (2010). Interpretive phenomenology in health care research. Indianapolis, IN: Sigma Theta Tau.

Hesse-Biber, S. N. (2007). The practice of feminist in-depth interviewing. In S. N. Hesse-Biber & P. Leavy (Eds.), Feminist research practice: A primer (pp.111–148). Thousand Oaks, CA: Sage.

Hesse-Biber, S.N. and Leavy, P. (2006). Emergent methods in social research. Thousand Oaks, CA: Sage.

Acknowledgement

Kristin Kelly is in receipt of an Australian Government Research Training Program Scholarship at Swinburne University.

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