‘I Have to Explain to him’: How Companions Broker Mutual Understanding Between Patients with Intellectual Disabilities and Health Care Practitioners in Primary Care

Abstract

People with intellectual disabilities (ID) experience marked health inequalities. This is attributable, at least in part, to suboptimal healthcare communication with health care practitioners (HCPs) whereby patients with ID and HCPs struggle to understand each other. Companions who attend healthcare appointments with patients with ID can support the communicative exchange between patient and HCP, but their involvement can have unintended consequences. This article uses Conversation Analysis (CA) to analyse video-recorded data from primary care health checks involving 24 patients with ID. This method shows that companions use their linguistic and experiential resources to intervene as ‘brokers’ to address real or potential threats to mutual understanding between patients with ID and HCPs. Their interventions can fill in the gaps in knowledge and understanding of the other parties, but also run the risk of deskilling the others in the interaction, by relieving them of the obligation to address communication breakdown directly themselves.

Keywords

primary health care conversation analysis intellectual disabilities doctor-patient communication

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References

Ali

Scior

Ratti

Strydom

King

Hassiotis

(2013). Discrimination and other barriers to accessing health care: Perspectives of patients with mild and moderate intellectual disability and their carers. PloS One, 8(8), Article e70855. https://doi.org/10.1371/journal.pone.0070855

Antaki

Chinn

Walton

Finlay

W. M. L.

Sempick

(2020). To initiate repair or not? Coping with difficulties in the talk of adults with intellectual disabilities. Clinical Linguistics and Phonetics, 34(10-11), 954–976. https://doi.org/10.1080/02699206.2019.1680734

Antaki

Finlay

W. M. L.

Walton

(2007). Conversational shaping: Staff members’ solicitation of talk from people with an intellectual impairment. Qualitative Health Research, 17(10), 1403–1414. https://doi.org/10.1177/1049732307308950

Antaki

Wilkinson

(2012). Conversation analysis and the study of atypical populations. In Sidnell

Jack

Stivers

Tanya

(Eds.), The handbook of conversation analysis. John Wiley & Sons.

Barnes

R. K.

(2019). Conversation analysis of communication in medical care: description and beyond. Research on Language and Social Interaction, 52(3), 300–315. https://doi.org/10.1080/08351813.2019.1631056

Bolden

G. B.

(2011). On the organization of repair in multiperson conversation: The case of “other”-selection in other-initiated repair sequences. Research on Language & Social Interaction, 44(3), 237–262. https://doi.org/10.1080/08351813.2011.591835

Bolden

G. B.

(2012). Across languages and cultures: Brokering problems of understanding in conversational repair. Language in Society, 41(1), 97–121. https://doi.org/10.1017/S0047404511000923

Chinn

(2017). Review of interventions to enhance the health communication of people with intellectual disabilities: a communicative health literacy perspective. Journal of Applied Research in Intellectual Disabilities, 30(2), 345–359. https://doi.org/10.1111/jar.12246

Chinn

Rudall

(2021). Who is asked and who gets to answer the health care practitioner’s questions when patients with intellectual disabilities attend GP health checks with their companions? Health Communication, 36(4), 487–496. https://doi.org/10.1080/10410236.2019.1700440

10.

Clayman

M. L.

Roter

Wissow

L. S.

Bandeen-Roche

(2005). Autonomy-related behaviors of patient companions and their effect on decision-making activity in geriatric primary care visits. Social Science & Medicine, 60(7), 1583–1591. https://doi.org/10.1016/j.socscimed.2004.08.004

11.

Doherty

A. J.

Atherton

Boland

Hastings

Hives

Hood

James-Jenkinson

Leavey

Randell

Reed

Taggart

Wilson

Chauhan

(2020). Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: An integrative review. BJGP Open, 4(3), Article bjgpopen20X101030. https://doi.org/10.3399/bjgpopen20X101030

12.

Doody

Bailey (2017). Pain and pain assessment in people with intellectual disability: Issues and challenges in practice. British Journal of Learning Disabilities, 45(4), 157–165. https://doi.org/10.1111/bld.12189

13.

Egbert

M. M.

(1997). Some interactional achievements of other-initiated repair in multiperson conversation. Journal of Pragmatics, 27(5), 611–634. https://doi.org/10.1016/S0378-2166(96)00039-2

14.

Fish

Hatton

Chauhan

(2017). Tell me what they do to my body”: A survey to find out what information people with learning disabilities want with their medications. British Journal of Learning Disabilities, 45(3), 217–225. https://doi.org/10.1111/bld.12196

15.

Goodwin

M. H.

Goodwin

(1986). Gesture and coparticipation in the activity of searching for a word. Semiotica, 62(1–2), 51–76. https://doi.org/10.1515/semi.1986.62.1-2.51

16.

Greer

(2015). Appealing to a broker: initiating third-person repair in mundane second language interaction. Research on Youth and Language, 9, 1–14.

17.

Hayashi

(2003). Language and the body as resources for collaborative action: a study of word searches in Japanese conversation. Research on Language and Social Interaction, 36(2), 109–141. https://doi.org/10.1207/S15327973RLSI3602_2

18.

Hemsley

Balandin

Worrall

(2011). Nursing the patient with developmental disability in hospital: Roles of paid carers. Qualitative Health Research, 21(12), 1632–1642. https://doi.org/10.1177/1049732311415289

19.

Hepburn

Bolden

G. B.

(2013). The conversation analytic approach to transcription. In Sidnell

Stivers

(eds.), The handbook of conversation analysis. John Wiley & Sons.

20.

Heritage

(1998). Oh-prefaced responses to inquiry. Language in Society, 27(3), 291–334. https://doi.org/10.1017/S0047404500019990

21.

Heritage

Maynard

D. W.

(2006). Communication in medical care: Interaction between primary care physicians and patients. Cambridge University Press.

22.

Hoghton

(2010). A step by step guide for GP practices: Annual health checks for people with a learning disability. Royal College of General Practitioners.

23.

Holt

(2012). Using laugh responses to defuse complaints. Research on Language and Social Interaction, 45(4), 430–448. https://doi.org/10.1080/08351813.2012.726886

24.

Jefferson

(2007). Preliminary notes on abdicated other-correction. Journal of Pragmatics, 39(3), 445–461. https://doi.org/10.1016/j.pragma.2006.07.006

25.

Kaley

Hatton

Milligan

(2019). More than words: The use of video in ethnographic research with people with intellectual disabilities. Qualitative Health Research, 29(7), 931–943. https://doi.org/10.1177/1049732318811704

26.

Kitzinger

(2012). Repair. In Sidnell

Stivers

(eds), The Handbook of Conversation Analysis (pp. 229–256). John Wiley & Sons.

27.

Laidsaar-Powell

Butow

Boyle

Juraskova

(2018). Managing challenging interactions with family caregivers in the cancer setting: Guidelines for clinicians (TRIO Guidelines-2). Patient Education and Counseling, 101(6), 983–994. https://doi.org/10.1016/j.pec.2018.01.020

28.

Laidsaar-Powell

R. C.

Butow

P. N.

Charles

Gafni

Lam

W. W. T.

Jansen

McCaffery

K. J.

Shepherd

H. L.

Tattersall

M. H. N.

Juraskova

(2013). Physician–patient–companion communication and decision-making: A systematic review of triadic medical consultations. Patient Education and Counseling, 91(1), 3–13. https://doi.org/10.1016/j.pec.2012.11.007

29.

Lerner

G. H.

(1992). Assisted storytelling: Deploying shared knowledge as a practical matter. Qualitative Sociology, 15(3), 247–271. https://doi.org/10.1007/BF00990328

30.

Lerner

G. H.

(2003). Selecting next speaker: The context-sensitive operation of a context-free organization. Language in Society, 32(2), 177–201. https://doi.org/10.1017/S004740450332202X

31.

Macdonald

L. M.

(2016). Expertise in everyday nurse–patient conversations: the importance of small talk. Global Qualitative Nursing Research, 3, Article 2333393616643201. https://doi.org/10.1177/2333393616643201

32.

Mastebroek

Naaldenberg

Tobi

van Schrojenstein Lantman

H. M.

Lagro-Janssen

A. L.

Leusink

G. L.

(2017). Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities: A modified Delphi study. Patient Education and Counseling, 100(10), 1842–1851. https://doi.org/10.1016/j.pec.2017.04.010

33.

Mastebroek

Naaldenberg

van den Driessen Mareeuw

F. A.

Lagro-Janssen

A. L. M.

Lantman-de Valk

H. M. J. V. S

(2016). Experiences of patients with intellectual disabilities and carers in GP health information exchanges: A qualitative study. Family Practice, 33(5), 543–550. https://doi.org/10.1093/fampra/cmw057

34.

NHS England (2017). A summary and overview of the learning disability annual health check electronic clinical template (2017). NHS England.

35.

Oelschlaeger

M. L.

(1999). Participation of a conversation partner in the word searches of a person with aphasia. American Journal of Speech-Language Pathology, 8(1), 62–71. https://doi.org/10.1044/1058-0360.0801.62

36.

Oelschlaeger

M. L.

Damico

J. S.

(1998). Joint productions as a conversational strategy in aphasia. Clinical Linguistics & Phonetics, 12(6), 459–480. https://doi.org/10.3109/02699209808985238

37.

O’Leary

Cooper

S.-A.

Hughes‐McCormack

(2018). Early death and causes of death of people with intellectual disabilities: A systematic review. Journal of Applied Research in Intellectual Disabilities, 31(3), 325–342. https://doi.org/10.1111/jar.12417

38.

Rindstedt

(2014). Conversational openings and multiparty disambiguations in doctors’ encounters with young patients (and their parents). Text & Talk, 34(4), 421–442. https://doi.org/10.1515/text-2014-0010

39.

Royal College of Nursing . (2013). Dignity in health care for people with learning disabilities. RCN Guidance (2nd ed.). Royal College of Nursing.

40.

Schegloff

E. A.

(1992). Repair after next turn: The last structurally provided defense of intersubjectivity in conversation. American Journal of Sociology, 97(5), 1295–1345. https://doi.org/10.1086/229903

41.

Schegloff

E. A.

Jefferson

Sacks

(1977). The preference for self-correction in the organization of repair in conversation. Language, 53(2), 361–382. https://doi.org/10.1353/lan.1977.0041

42.

Shogren

K. A.

Wehmeyer

M. L.

(2015). A framework for research and intervention design in supported decision-making. Inclusion, 3(1), 17–23. https://doi.org/10.1352/2326-6988-3.1.17

43.

Sidnell

Stivers

(2012). The handbook of conversation analysis. John Wiley & Sons.

44.

Skelt

(2007). Damage control: Closing problematic sequences in hearing-impaired interaction. Australian Review of Applied Linguistics, 30(3), 34–134. https://doi.org/10.2104/aral0734

45.

Stivers

(2001). Negotiating who presents the problem: Next speaker selection in pediatric encounters. Journal of Communication, 51(2), 252–282. https://doi.org/10.1111/j.1460-2466.2001.tb02880.x

46.

Stringer

Terry

A. L.

Ryan

B. L.

Pike

(2018). Patient-centred primary care of adults with severe and profound intellectual and developmental disabilities: Patient-caregiver-physician relationship. Canadian Family Physician, 64(Suppl 2), S63–S69.

47.

Themistocleous

McCabe

Rees

Hassan

Healey

P. G. T.

Priebe

(2009). Establishing mutual understanding in interaction: An analysis of conversational repair in psychiatric consultations. Communication & Medicine, 6(2), 165–176. https://doi.org/10.1558/cam.v6i2.165

48.

Wilkinson

Dreyfus

Cerreto

Bokhour

(2012). Sometimes I feel overwhelmed”: Educational needs of family physicians caring for people with intellectual disability. Intellectual and Developmental Disabilities, 50(3), 243–250. https://doi.org/10.1352/1934-9556-50.3.243

49.

Williams

Porter

(2015). Third-party turns and shared knowledge: Supports and challenges to disabled people in social care and research settings. Communication & Medicine, 12(1), 71–83. https://doi.org/10.1558/cam.v12i1.30178