Narratives of Recovery Over the First Year After Major Lower Limb Loss

Abstract

The objectives of this research were to extend previous research by exploring the psychosocial experiences of patients over the first year after major lower limb amputation (MLLA) and identify implications for rehabilitation practice. This research took place at a United Kingdom–based National Health Service–operated prosthetic rehabilitation center. Thirty patients were recruited who had experienced MLLA within the last year and were undertaking prosthetic rehabilitation. Data were collected through semi-structured narrative interviews, observation, and a reflexive journal and analyzed using dialogical narrative analysis. The concept of well-being was used to map patients’ recovery trajectories, and five narrative typologies were identified: accelerated decline, adaptation, illusory cure, muddling along, and projection. This article advances knowledge by opening up new possibilities for anticipating patients’ future needs through the stories they are telling in the present and provides the basis for additional resources supporting psychosocial recovery.

Keywords

amputation psychosocial recovery rehabilitation narrative inquiry qualitative United Kingdom

Get full access to this article

View all access options for this article.

References

Brimelow

(2012). Diabetes amputation rates show huge regional variation. http://www.bbc.co.uk/news/health-17270379

Caddick

(2016). Doing narrative analysis. In Lyons

Coyle

(Eds.), Analysing qualitative data in psychology (2nd ed., pp. 222–239). Sage.

Caddick

Smith

Phoenix

(2015). The effects of surfing and the natural environment on the well-being of combat veterans. Qualitative Health Research, 25(1), 76–86. https://doi.org/10.1177/1049732314549477

Campbell

Converse

P. E.

Rodgers

W. L.

(1976). The quality of American life: Perceptions, evaluations, and satisfactions. Russell Sage Foundation.

Connolly

Reilly

R. C.

(2007). Emergent issues with researching trauma: A confessional tale. Qualitative Inquiry, 13(4), 522–540. https://doi.org/10.1177/1077800406297678

Corbin

J. M.

(2003). The body in health and illness. Qualitative Health Research, 13(2), 256–267. https://doi.org/10.1177/1049732302239603

Cresswell

J. W.

Miller

D. L.

(2000). Determining validity in qualitative inquiry. Theory Into Practice, 39(3), 124–130. https://doi.org/10.1207/s15430421tip3903_2

Diabetes UK. (2018). Preventing type 2 diabetes. https://www.diabetes.org.uk/preventing-type-2-diabetes

Douglas

Carless

(2009). Exploring taboo issues in professional sport through a fictional approach. ReflectivePractice, 10(3), 311–323. https://doi.org/10.1080/14623940903034630

10.

Dunn

D. S.

(1996). Well-being following amputation: Salutary effects of positive meaning, optimism, and control. Rehabilitation Psychology, 41(4), 285–302. https://doi.org/10.1037/0090-5550.41.4.285

11.

Frank

A. W.

(2010). Letting stories breathe. Chicago, IL: The University of Chicago Press.

12.

Frank

A. W.

(2012). Practicing dialogical narrative analysis. In Holstein

Gubrium

(Eds.), Varieties of narrative analysis (pp. 33–52). Sage.

13.

Frank

A. W.

(2013). The wounded storyteller (2nd ed.). University of Chicago Press.

14.

Freeman

(2000). When the story’s over: Narrative foreclosure and the possibility of self-renewal. In Andrews

Slater

Squire

Treacher

(Eds.), Lines of narrative: Psychosocial perspectives (pp. 81–91). Routledge.

15.

Gallagher

MacLachlan

(2001). Adjustment to an artificial limb: A qualitative perspective. Journal of Health Psychology, 6(1), 85–100. https://doi.org/10.1177/135910530100600107

16.

Gergen

K. J.

Gergen

M. M.

(1997). Narratives of the self. In Hinchman

(Ed.), Memory, identity, community: The idea of narrative in the human sciences (pp. 161–184). State University of New York.

17.

Grech

Debono

R. F.

(2014). The lived experience of persons with an amputation. Malta Journal of Health Sciences, 1(2), 54–59.

18.

Griffin

Phoenix

(2016). Becoming a runner: Big, middle and small stories about physical activity participation in later life. Sport, Education and Society, 21(1), 11–27. https://doi.org/10.1080/13573322.2015.1066770

19.

Gullette

M. M.

(2004). Aged by culture. University of Chicago Press.

20.

Hochschild

A. R.

(1979). Emotion work, feeling rules, and social structure. American Journal of Sociology, 85(3), 551–575. https://doi.org/10.1086/227049

21.

Horgan

MacLachlan

(2004). Psychosocial adjustment to lower-limb amputation: A review. Disability and Rehabilitation, 26(14–15), 837–850. https://doi.org/10.1080/09638280410001708869

22.

Janoff-Bulman

(1992). Shattered assumptions: Towards a new psychology of trauma. Free Press.

23.

Kaiser

(2009). Protecting respondent confidentiality in qualitative research. Qualitative Health Research, 19, 1632–1641. https://doi.org/10.1177/1049732309350879

24.

Kelly

M. P.

Barker

(2016). Why is changing health-related behaviour so difficult? Public Health, 136, 109–116. https://doi.org/10.1016/j.puhe.2016.03.030

25.

Keyes

C. L. M.

Shmotkin

Ryff

C. D.

(2002). Optimizing well-being: The empirical encounter of two traditions. Journal of Personality and Social Psychology, 82(6), 1007–1022. https://doi.org/10.1037//0022-3514.82.6.1007

26.

McAdams

(1993). The stories we live by: Personal myths and the making of the self. Guildford Press.

27.

McAdams

D. P.

Reynolds

Lewis

Patten

A. H.

Bowman

P. J.

(2001). When bad things turn good and good things turn bad: Sequences of redemption and contamination in life narrative and their relation to psychosocial adaptation in midlife adults and in students. Personality and Social Psychology Bulletin, 27(4), 474–485. https://doi.org/10.1177/0146167201274008

28.

McLeod

(1997). Narrative and psychotherapy. Sage.

29.

Mehnert

Koch

(2005). Psychosocial care of cancer patients—International differences in definition, healthcare structures, and therapeutic approaches. Supportive Care in Cancer, 13(8), 579–588. https://doi.org/10.1007/s00520-005-0779-6

30.

Moxey

P. W.

Hofman

Hinchliffe

R. J.

Jones

Thompson

M. M.

Holt

P. J. E.

(2010). Epidemiological study of lower limb amputation in England between 2003 and 2008. British Journal of Surgery, 97(9), 1348–1353. https://doi.org/10.1002/bjs.7092

31.

NHS. (2016). Amputation. https://www.nhs.uk/conditions/amputation/

32.

Norlyk

Martinsen

Kjaer-Petersen

(2013). Living with clipped wings—Patients’ experience of losing a leg. International Journal of Qualitative Studies on Health and Well-Being, 8, Article 21891. https://doi.org/10.3402/qhw.v8i0.21891

33.

Papathomas

Williams

T. L.

Smith

(2015). Understanding physical activity participation in spinal cord injured populations: Three narrative types for consideration. International Journal of Qualitative Studies on Health and Well-Being, 10, 1–12. https://doi.org/10.3402/qhw.v10.27295

34.

Pedras

Carvalho

Pereira

M. G.

(2018). A predictive model of anxiety and depression symptoms after a lower limb amputation. Disability and Health Journal, 11(1), 79–85. https://doi.org/10.1016/j.dhjo.2017.03.013

35.

Phoenix

Smith

Sparkes

A. C.

(2010). Narrative analysis in aging studies: A typology for consideration. Journal of Aging Studies, 24, 1–11.

36.

Phoenix

Sparkes

A. C.

(2009). Being Fred: Big stories, small stories and the accomplishment of a positive ageing identity. Qualitative Research, 9(2), 219–236. https://doi.org/10.1177/1468794108099322

37.

Raphael

Renwick

Brown

Rootman

(1996). Quality of life indicators and health: Current status and emerging conceptions. Social Indicators Research, 39, 65–88. https://doi.org/10.1007/BF00300833

38.

Reeve

(2012). Psycho-emotional disablism: The missing link? In Watson

Roulstone

Thomas

(Eds.), Routledge handbook of disability studies (pp. 78–92). Routledge.

39.

Research and Disability Clinical Reference Group. (n.d.). Complex disability equipment – prosthetic specialised services for people of all ages with limb loss. Retrieved from https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/d01-serv-spec-dis-equ-prosth.pd (accessed 18 October 2018).

40.

Richardson

(2000). Writing: A method of inquiry. In Denzin

N. K.

Lincoln

Y. S.

(Eds.), Handbook of qualitative research (2nd ed., pp. 923–948). Sage.

41.

Rybarczyk

Nicholas

J. J.

Nyenhuis

D. L.

(1997). Coping with a leg amputation: Integrating research and clinical practice. Rehabilitation Psychology, 42(3), 241–256. https://doi.org/10.1037/0090-5550.42.3.241

42.

Ryff

C. D.

(1989). Happiness is everything, or is it? Explorations on the meaning of psychological well-being. Journal of Personality and Social Psychology, 57, 1069–1081. https://doi.org/10.1037/0022-3514.57.6.1069

43.

Sanders

Wadey

Day

Winter

(2019). Qualitative fieldwork in medical contexts: Confessions of a neophyte researcher. Qualitative Research in Sport, Exercise and Health, 11(1), 106–118. https://doi.org/10.1080/2159676X.2017.1351390

44.

Seligman

M. E. P.

(1975). Helplessness: On depression, development and death. Freeman.

45.

Sinha

van den Heuvel

(2011). A systematic literature review of quality of life in lower limb amputees. Disability and Rehabilitation, 33(11), 883–899. https://doi.org/10.3109/09638288.2010.514646

46.

Smith

(2013). Sporting spinal cord injuries, social relations, and rehabilitation narratives: An ethnographic creative non-fiction of becoming disabled through sport. Sociology of Sport Journal, 30, 132–152. https://doi.org/http://dx.doi.org/10.1123/ssj.30.2.132

47.

Smith

(2017). Generalizability in qualitative research: Misunderstandings, opportunities and recommendations for the sport and exercise sciences. Qualitative Research in Sport, Exercise and Health, 10, 137–149. https://doi.org/10.1080/2159676X.2017.1393221

48.

Smith

Caddick

Williams

(2015). Qualitative methods and conceptual advances in sport psychology. In Hanton

Mellalieu

S. D.

(Eds.), Contemporary advances in sport psychology: A review (pp. 202–225). Routledge.

49.

Smith

Sparkes

(2005). Men, sport, spinal cord injury and narratives of hope. Social Science and Medicine, 61, 1095–1105. https://doi.org/10.1016/j.socscimed.2005.01.011

50.

Sparkes

A. C.

(2004). Bodies, narratives, selves, and autobiography: The example of Lance Armstrong. Journal of Sport and Social Issues, 28(4), 397–428. https://doi.org/10.1177/0193723504269907

51.

Sparkes

A. C.

Smith

(2014). Qualitative research methods in sport, exercise and health. Routledge.

52.

Tracy

S. J.

(2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121

53.

van Twillert

Postema

Geertzen

J. H. B.

Hemminga

Lettinga

A. T.

(2009). Improving rehabilitation treatment in a local setting: A case study of prosthetic rehabilitation. Clinical Rehabilitation, 23(10), 938–947. https://doi.org/10.1177/0269215509338125

54.

van Twillert

Stuive

Geertzen

J. H. B.

Postema

Lettinga

A. T.

(2014). Functional performance, participation and autonomy after discharge from prosthetic rehabilitation: Barriers, facilitators and outcomes. Journal of Rehabilitation Medicine, 46(9), 915–923. https://doi.org/10.2340/16501977-1846

55.

Wadey

Day

(2018). A longitudinal examination of leisure time physical activity following amputation in England. Psychology of Sport & Exercise, 37, 251–261. https://doi.org/10.1016/j.psychsport.2017.11.005

56.

Warren

Manderson

(2008). Constructing hope: Dis/Continuity and the narrative construction of recovery in the rehabilitation unit. Journal of Contemporary Ethnography, 37(2), 180–201. http://doi.org/10.1177/0891241607312493

57.

Wearing

(1995). Leisure and resistance in an ageing society. Leisure Studies, 14, 263–279. https://doi.org/10.1080/02614369500390201

58.

Williams

T. L.

(2015). Spinal cord injury and physical activity: Health, well-being and (false) hope [Unpublished doctoral thesis, Loughborough University]. https://dspace.lboro.ac.uk/dspace-jspui/bitstream/2134/21138/1/Thesis-2016-Williams.pdf

59.

Williamson

G. M.

Schulz

Bridges

M. W.

Behan

A. M.

(1994). Social and psychological factors in adjustment to limb amputation. Journal of Social Behaviour and Personality, 9(5), 249–268.

60.

Wray

Markovic

Manderson

(2007). “Researcher saturation”: The impact of data triangulation and intensive-research practices on the researcher and qualitative process. Qualitative Health Research, 17(10), 1392–1402. https://doi.org/10.1177/1049732307308308

61.

Zidarov

Swaine

Gauthier-Gagnon

(2009). Quality of life of persons with lower-limb amputation during rehabilitation and at 3-month follow-up. Archives of Physical Medicine and Rehabilitation, 90, 634–645. https://doi.org/10.1016/j.apmr.2008.11.003