Poetic synthesis – a ‘special language’ for research

Research poetry, or 'Poetic Inquiry', has become increasingly important within health psychology. It is used as a tool for data generation, analysis and presentation of research results (Furman, 2006), using a variety of techniques. Sandra Faulkner – who describes herself as 'academic, social scientist, poet' – states that 'poetry may be considered a "special language" that researchers want to access' (2020, p.17) to further the understanding and impact of their work.

As both qualitative research and poetry 'share understanding of living and what it is like "to be there" [by bringing] the richness of experience into language' (Galvin & Todres, 2009, p.309), poetry may heighten and emphasise the findings of qualitative research. Additionally, as Brown comments, poetry may help the researcher to gain new perspectives and 'present findings that may otherwise go unnoticed' (2018, p.107).

For all these reasons and more, I have begun using poetry as a method for developing and presenting the findings of a qualitative evidence synthesis, which examined the experiences of parents caring for profoundly disabled young people.

How the poetry evolved

Two conference experiences led me to incorporating poetry in my PhD research. At the Phenomenology of Health and Relationships (PHaR) Conference in 2019 I listened to Beth Moran read 'I am' poems drawn from interviews with social work students, and was struck by the insight and emotion her poems revealed. Subsequently, I attended British Psychological Society seminars which explored the use of creative and arts-based methods in applied psychological research.

I saw the possibility of presenting my research findings in a more dynamic way than the traditional table of quotations, by presenting poems which could be read either quietly and reflectively as a solo activity, or dramatically out loud to an audience. Either way, I felt the narratives and reflections of participants would be received by a wider audience, in an 'ethical, caring and empathetic' manner (Faulkner, 2020, p.39).

My research focuses on the experiences of parent-carers of young people with profound and multiple learning disabilities at the transition from paediatric to adult services. The learning disabilities and complex healthcare needs of this group require constant monitoring and intense parenting.

The group has rarely been represented as a separate entity within disability research until recently, usually being included in studies of wider learning-disabled cohorts. I undertook a Qualitative Evidence Synthesis to examine the unseen nature of the caring experiences of these parents, during the teenage and early adult years of their children, with the aim to identify parental support needs at this stage (Slade et al., 2023).

19 papers from eight countries (defined by membership of the OECD, with a universal healthcare system) were identified and assessed. Qualitative data and findings were extracted, both in first order (participants' direct quotations) and second order (original authors' interpretations), and an initial thematic synthesis was undertaken according to Thomas and Harden's guidelines (2008).

Research topics included parents' experiences of working with healthcare and social-care professionals; interpreting their children's pain; risk management and choice-making processes; transition-specific issues and the caring experiences of mothers from ethnic minorities within the UK and Australia.

Given the spread of research topics covered in the papers, it was decided to adopt a 'line of argument' approach (Noblit & Hare, 1988) in order to reflect the breadth of the data within the overarching themes. After an initial write-up of the themes, I returned to the first-order data and developed what became known as the 'poetic synthesis'.

Finding, surrendering

The resulting poetry can be described as 'found poems', in that they were created from 'text discovered in a non-poetic setting…removed its context and presented as a poem' (Drury, cited by Faulkner, 2020, p.159). Exceptional use of language and imagery was highlighted in the thematic analysis and carried forward, as well as elements of truth and surprise in the participants' narratives.

I then used Prendergast's Surrender and Catch approach to generating 'found' poems (Faulker, 2020). Prendergast's method suggests suspending any notion of what you expect to find – 'the surrender' – and allowing what happens to happen – 'the catch' (Faulkner, 2020, p.162).

Being the parent of a young man with learning disabilities, I found 'surrendering' my preconceptions of the phenomenon of caring challenging. However, in examining the verbatim participant quotations alongside the developed lines of argument, I found specific aspects of caring were well illuminated (the catch), resonating with my own experiences and emotional responses.

I adopted free verse in order to prioritise and enhance the participants' voices, retaining their original vocabulary and imagery. The poems underwent several iterations, with revisions to existing phrases, for example losing extraneous conjunctions and standardising pronouns for consistency within a narrative. Whilst words were removed and the order sometimes changed, it was important to stay as close to the original quotations as possible for authenticity. Titles were then given to add a further layer of interpretation.

The poems

In total, seven poems were written, six being incorporated within the published synthesis. Three are reproduced here.

This Sacrifice

Caring for somebody
Who is different, and damaged
Is a bit like having a job.
It's full-time: no days off.
I'm on duty, constant.
There's no going out, saying,
'Wee that's it: I've done my day'.
The day passes, and another day,
just another day, and one more day.
I can't see myself, my personality.
I forget my future,
my studies, my MPhil.
I forget my parents,
my brother and sister.
This sacrifice just happened.
I can't carry on,
living with fear all the time.
Three breakdowns:
I want to give up.
I want my life back
    
The poem synthesises quotations from six participants, across three papers (Griffith et al., 2011; Oulton & Heyman, 2009; Tomczynszyn, 2019), which considered the questions of risk management, the problems of raising a disabled child in Poland, and accessing support services in the UK.

Even though the research questions were diverse, this poem serves as an introduction to the parental experiences of isolation and self-sacrifice. The compilation of the experiences adds to the expression of relentlessness of caring, compounded by the mention of the passing of time. The poem sets the scene for the following discussion around parental sense of responsibility and their fear of the future.

How is it possible to love a disabled child?

Looking on the outside of things
People think it's something
Dirty or Horrible?
That's the way people think.
The way I used to think
Before I had Nadeem.
Everyone used to pull their noses up
I felt I'd done something wrong,
Like he'd been cursed?

It's all a load of rubbish
What they say – people.
His brain is not functioning properly
And I've fallen in love with him like that.
I love him.
If I didn't love him I don't think
I would be able to care for him;
When he's hungry, I wouldn't feed him on time
Or make him his special foods;
I wouldn't bath him, wash him, change him
And make sure he's nice and clean.

When you have a child with special needs,
It's not that you won't love them
It's that you'll love them too much.

This narrative presented itself naturally as a poem from the original paper (drawn from Croot et al., 2012). Whilst this poem concentrates on one mother's experiences of ignorance, prejudice and bigotry within her community towards disability, it is also a tale of personal growth and her unconditional love towards her son. Initially, it may seem impossible to love someone who is considered 'dirty' or 'cursed'.

However, her attitude changes over time, whilst the addition of another mother's voice counteracts this shift with 'too much' love, and consequent suggestion of vulnerability (Thackeray & Eatough, 2015). It illuminated the theme of parent-child interdependence and protectiveness, which leads to a reluctance on the mothers' part to share responsibility.

Preparation for Adulthood

You're not sure 
who's your 
First port of call
Moving towards a precipice
Not knowing
Will I have a parachute 
Or not?
The real affection and 
mutual respect gone
All of a sudden
Like somebody taking a rug 
Just pulling it out-
It was scary
It was lonely
It was like where do I start?

Two sentences do not explain
Eighteen years of care
Doing my best for her
I'm not going to stop now
I won't be left hanging there 
Hung out to dry.
The parachute appeared 
At the last minute
I didn't even see it
It was a total blank:
I am going to be a carer 
For the rest of my life
Facing that reality

This poem drew upon quotations from research which specifically focused on the transition to adult services (Brown et al, 2020; Davies et al 2012; Gauthier-Boudreault et al, 2017), and the poem highlights the insecurity that parents feel at this time. In particular, the imagery of the unopened parachute echoes the often-quoted image of transition to adult services being like a cliff edge. The poem was used to introduce the theme of an uncertain future.

The poems were reviewed by my supervisory team, the Transition Research Advisory Group (TRAG) as well as by members of the PHaR group at Aston University. Some members of the TRAG, who are parents of young people with disabilities themselves, felt that the tone of the poems was too negative. The research team revisited the original data to confirm that the poems reflected the findings. We decided that the participants often commented on difficulties they faced in their day to day lives, answering research questions designed to identify problems.

Two authors of the original papers also commented on the poems. Dr Lisa Thackeray commented that she didn't feel the poems were negative, but rather 'actually in terms of …people valuing their children and loving them… all of that comes from that place of deep care and concern'. Dr Liz Croot commented that the poem took her back to the original interview, and the intricacies of interviewing families whose first language is not English. Both were positive about the adaptation of their research in this manner; one suggested she might pin the poem on the wall in her office.

The emotional content of the research resonated particularly with the PIMD Special Interest Research Group at the IASSIDD conference (2022), the delivery of poems being well received. While there may be resistance to poetry in a general context – 'it's seen as difficult …triggers more uncomfortableness in how to "read" it, more uncertainty about what a poem "means"' (Camic, 2024) – within this research context where the messages are clear, it is an effective method of bringing together multiple viewpoints. As Furman says, 'the compressed nature of the poem forces the author to make decisions about what is essential'. The poems also reveal the emotive reflections of the parents, which were often buried in the original papers within tables of quotations.

On a personal level, I have been surprised by the emotional and largely positive response to the poems. I am glad that I have managed to highlight the challenges parents face in caring for profoundly disabled children in a novel way.

Katharine Slade is a PhD Student (Psychology) in the Institute of Health and Neurodevelopment, Aston University. Her supervisory team are Dr Gemma Heath, Dr Michael Larkin and Professor Rachel Shaw.

Key sources

Brown,C. (2018) The use of poetry in qualitative post-hoc analysis Journal of Poetry Therapy 31(2): 107–112. http://doi.org/10.1080/08893675.2018.1448950

Camic P.M. (2024) 'But it makes me uncomfortable': the challenges and opportunities of research poetry. Arts & Health. 2024 Apr 2:1-6. https://doi.org/1080/17533015.2024.2328120. Epub ahead of print. PMID: 38563497.

Faulkner, S. (2020). Poetic inquiry. Craft, method and practice (2nd ed.). Routledge.
Furman, R. & Dill, L. (2015). Extreme data reduction: The case for the research tanka. Journal of Poetry Therapy, 28(1), 43–52. https://doi.org/10.1080/08893675.2015.990755

Galvin, K. & Todres, L. (2009). Poetic inquiry & phenomenological research: The practice of embodied interpretation. In M. Prendergast, C. Leggo, & P. Sameshima (Eds.), Poetic inquiry (pp. 307–316). Sense.

Noblit GW, Hare RD.  (1988) Meta-ethnography: Synthesizing qualitative studies.
California: Sage Publications Ltd; 1988.

Slade, K., Shaw, R. L., Larkin, M., & Heath, G. (2023). Care-giving experiences of parents of young people with PMLD and complex healthcare needs in the transition to adulthood years: a qualitative poetic synthesis. Arts & Health, 1–18. https://doi.org/10.1080/17533015.2023.2288058

Thomas, J. & Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews BMC. BMC Medical Research 8(1)  https://doi.org/10.1186/1471-2288-8-45

References for papers included in review

1. Bhopti, A., Brown, T., & Lentin, P. (2020). Opportunities for participation, inclusion and recreation in school-aged children with disability influences parent occupations and family quality of life: A mixed-methods study. British Journal of Occupational Therapy, 83(4), 204-214. doi:10.1177/0308022619883480
2. Bindels-de Heus, K., van Staa, A., van Vliet, I., Ewals, F., & Hilberink, S. R. (2013). Transferring Young People With Profound Intellectual and Multiple Disabilities From Pediatric to Adult Medical Care: Parents' Experiences and Recommendations. Intellectual and Developmental Disabilities, 51(3), 176-189. doi:10.1352/1934-9556-51.3.176
3. Brown, M., Higgins, A., MacArthur, J. (2020) Transition from child to adult health services: a qualitative study of the views and experiences of families of young adults with intellectual disabilities. Journal of Clinical Nursing 29: 195-207, doi: 10.1111/jocn.15077
4. Croot, E., Grant, G., Mathers, N., & Cooper, C. (2012). Coping strategies used by Pakistani parents living in the United Kingdom and caring for a severely disabled child. Disability and Rehabilitation, 34(18), 1540-1549. doi:10.3109/09638288.2011.650310
5. Davey, H., Imms, C., & Fossey, E. (2015). "Our child's significant disability shapes our lives": experiences of family social participation. Disability and Rehabilitation, 37(24), 2264-2271. doi:10.3109/09638288.2015.1019013
6. Davies, H., Rennick, J., & Majnemer, A. (2011). Transition from pediatric to adult health care for young adults with neurological disorders: parental perspectives. Canadian journal of neuroscience nursing, 33(2), 32-39. Retrieved from <Go to ISI>://MEDLINE:21977770
7. Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K., & Davern, M. (2010). The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care Health and Development, 36(1), 63-73. doi:10.1111/j.1365-2214.2009.00989.x
8. Doyle, C. (2020). The importance of supportive relationships with general practitioners, hospitals and pharmacists for mothers who 'give medicines' to children with severe and profound intellectual disabilities. J Intellect Disabil, 1744629520951003. doi:10.1177/1744629520951003
9. Gauthier-Boudreault, C., Gallagher, F., & Couture, M. (2017). Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing? Research in Developmental Disabilities, 66, 16-26. doi:10.1016/j.ridd.2017.05.001
10. Gibbs, S. M., Brown, M. J., & Muir, W. J. (2008). The experiences of adults with intellectual disabilities and their carers in general hospitals: A focus group study. Journal of Intellectual Disability Research, 52(12), 1061-1077. doi:10.1111/j.1365-2788.2008.01057.x
11. Griffith, G & Hastings, R.  (2014) He's hard work but he's worth it. The experiences of caregivers of individuals with intellectual disabilities and challenging behaviour: a metasynthesis of qualitative data. Journal of Applied Research in Intellectual Disabilities, 27, 401–419. doi: 10.1111/jar.12073
12. Lee, J and Chang, J (2021) Oral health issues of young adults with severe intellectual and developmental disabilities and caregiver burdens: a qualitative study. BMC Oral Health 21:538 doi: 10.1186/s12903-021-01896-3
13. Mitchell, W. (2012). Parents' accounts: Factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making. Children and Youth Services Review, 34(8), 1560-1569. doi:10.1016/j.childyouth.2012.04.009
14. Oulton, K., & Heyman, B. (2009). Devoted protection: How parents of children with severe learning disabilities manage risks. Health, Risk and Society, 11(4), 303-319. doi:10.1080/13698570903013631
15. Sim, S. S., Bourke-Taylor, H., Fossey, E., Yu, M-l. (2021) Being more than a mother: A qualitative study of Asian immigrant mothers in Australia who have children with disabilities. Research in Developmental Disabilities, 117. doi: 10.1016/j.ridd.2021.104060
16. Ståhle-Öberg, L., & Fjellman-Wiklund, A. (2009). Parents' experience of pain in children with cerebral palsy and multiple disabilities An interview study. Advances in Physiotherapy, 11(3), 137-144. doi:10.1080/14038190902906318
17. Thackeray, L. A., & Eatough, V. (2015). 'Well the Future, that is Difficult': A Hermeneutic Phenomenological Analysis Exploring the Maternal Experience of Parenting a Young Adult with a Developmental Disability. Journal of Applied Research in Intellectual Disabilities, 28(4), 265-275. doi:10.1111/jar.12126
18. Tomczyszyn, D. (2019). Problems of mothers raising a child with intellectual disability Health Problems of Civilization, 13(4), 254-263. doi:10.5114/hpc.2019.89461
19. Young-Southward, G., Cooper, S. A., & Philo, C. (2017). Health and wellbeing during transition to adulthood for young people with intellectual disabilities: A qualitative study. Research in Developmental Disabilities, 70, 94-103. doi:10.1016/j.ridd.2017.09.003