“It Doesn't All Just Stop at 18”: Psychological Adjustment and Support Needs of Adults Born with Cleft Lip and/or Palate

Abstract

Background

Cleft in the lip and/or the palate (CL/P) is considered to be a lifelong condition, yet relatively little is known about the long-term outcomes for patients. Existing literature is largely outdated and conflicted, with an almost exclusive focus on medical aspects and deficits.

Objective

To explore the psychological adjustment and possible support needs of a large number of adults born with CL/P from their own perspective.

Design

Fifty-two individual telephone interviews eliciting qualitative data.

Results

Qualitative analysis identified five themes. Participants reported a range of challenges in relation to discharge from the service, additional surgery as an adult, social and romantic relationships, higher education, vocational achievement, and access to psychological support. The findings imply that most adults with a cleft adjust well to these challenges and report many positive outcomes. For a minority of patients, issues attributed to the cleft may continue to cause distress in adulthood.

Conclusions

Adults with CL/P may require psychological support, information about the heritability of cleft, signposting and referrals from nonspecialists, support regarding further treatment, and opportunities to take part in research and activities. New issues arising in adulthood, such as entering the workplace, forming long-term relationships, and starting a family, may warrant both further investigation and additional support. Further work is needed to identify the factors that contribute to psychological distress and resilience, as well as the timing of particular points of risk and opportunity for personal growth.

Keywords

adult cleft education employment psychosocial quality of life resilience treatment

Get full access to this article

View all access options for this article.

References

Alansari

, Bedoss

, Allison

Living with cleft lip and palate: the treatment journey. Cleft Palate Craniofac J. 2014; 51: 222–229.

Appearance Research Collaboration. Identifying Factors and Processes Contributing to Successful Adjustment to Disfiguring Conditions. Final Report. Bristol, UK: Centre for Appearance Research, University of the West of England; 2009.

Ashikali

E-M

, Dittmar

, Ayers

Adolescent girls' views on cosmetic surgery: a focus group study. J Health Psychol. In press.

Berk

N.W.

, Cooper

M.E.

, Liu

, Marazita

M.L.

Social anxiety in Chinese adults with oral-facial clefts. Cleft Palate Craniofac J. 2001; 38: 126–133.

Bjornsson

, Agustdottir

A psychosocial study of Icelandic individuals with cleft lip or cleft lip and palate. Cleft Palate Craniofac J. 1987; 24: 152–157.

Braun

, Clarke

Using thematic analysis in psychology. Qual Res Psychol. 2006; 3: 77–101.

British Psychological Society. Code of Ethics and Conduct. Guidance by the Ethics Committee of the British Psychological Society. Leicester, UK: British Psychological Society; 2009.

Brown

, Furnham

, Glanville

, Swami

Factors that affect the likelihood of undergoing cosmetic surgery. Aesthet Surg J. 2007; 27: 501–508.

Brown

, Moss

, McGrouther

, Bayat

Skin scar pre-conceptions must be challenged: importance of self-perception in skin scarring. J Plast Reconstr Aesthet Surg. 2010; 63: 1022–1029.

10.

Bull

, Rumsey

The Social Psychology of Facial Appearance. London: Springer-Verlag; 1988.

11.

Chetpakdeechit

, Hallberg

, Hagberg

, Mohlin

Social life aspects of young adults with cleft lip and palate: grounded theory approach. Acta Odontol Scand. 2009; 67: 122–128.

12.

Cheung

L.K.

, Loh

J.S.P.

, Ho

S.M.Y.

Psychological profile of Chinese with cleft lip and palate deformities. Cleft Palate Craniofac J. 2007; 44: 79–86.

13.

Christensen

, Mortensen

P.B.

Facial clefting and psychiatric diseases: a follow-up of the Danish 1936–1987 facial cleft cohort. Cleft Palate Craniofac J. 2002; 39: 392–396.

14.

Chuo

C.B.

, Searle

, Jeremy

, Richard

B.M.

, Sharp

, Slator

The continuing multidisciplinary needs of adult patients with cleft lip and/or palate. Cleft Palate Craniofac J. 2008; 45: 633–638.

15.

Clarke

, Thompson

A.R.

, Jenkinson

, Rumsey

, Newell

CBT for Appearance Anxiety: Psychosocial Interventions for Anxiety due to Visible Difference. West Sussex, UK: Wiley-Blackwell; 2013.

16.

Clifford

, Crocker

, Pope

Psychological findings in the adulthood of 98 cleft palate children. J Plast Reconstr Surg. 1972; 50: 234–237.

17.

Cochrane

V.M.

, Slade

Appraisal and coping in adults with cleft lip: associations with well-being and social anxiety. Br J Med Psychol. 1999; 72: 485–503.

18.

Cohen

, McKay

Social support, stress and the buffering hypothesis: A theorical analysis. In: Baum

, Singer

J.E.

, Taylor

, eds. Handbook of Psychology and Health. Hillside, NJ: Erlbaum; 1984: 253–267.

19.

Danino

, Gradell

, Malka

, Moutel

, Herve

, Rosilio

Social adjustment in French adults who had undergone standardised treatment of complete unilateral cleft lip and palate. Ann Chir Plast Esthet. 2005; 50: 202–205.

20.

De Sousa

Psychological issues in oral and maxillofacial reconstructive surgery. Br J Oral Maxillofac Surg. 2008; 46: 661–664.

21.

Egan

, Harcourt

, Rumsey

, Appearance Research Collaboration. A qualitative study of the experiences of people who identify themselves as having adjusted positively to a visible difference. J Health Psychol. 2011; 16: 739–749.

22.

Eide

M.A.

, Skjaerven

, Irgens

L.M.

, Bjerkedal

, Oyen

Associations of birth defects with adult intellectual performance, disability and mortality: population-based cohort study. Pediatr Res. 2006; 59: 848–853.

23.

Eiserman

Unique outcomes and positive contributions associated with facial difference: expanding research and practice. Cleft Palate Craniofac J. 2001; 38: 236–244.

24.

Feragen

K.J.B.

, Kvalem

I.L.

, Rumsey

, Borge

A.I.H.

Adolescents with and without a facial difference: the role of friendships and social acceptance in perceptions of appearance and emotional resilience. Body Image. 2010; 7: 271–279.

25.

Feragen

K.J.B.

, Stock

N.M.

When there is more than a cleft: psychological adjustment when a cleft is associated with an additional condition. Cleft Palate Craniofac J. 2014; 51: 5–14.

26.

Feragen

K.J.B.

, Stock

N.M.

, Rumsey

Toward a reconsideration of inclusion and exclusion criteria in cleft lip and palate: implications for psychological research. Cleft Palate Craniofac J. 2014; 51: 569–578.

27.

Fishman

D.B.

The Case for Pragmatic Psychology. New York: NYU Press; 1999.

28.

Foo

, Sampson

, Roberts

, Jamieson

, David

Facial aesthetics and perceived need for further treatment among adults with repaired cleft as assessed by cleft team professionals and laypersons. Eur J Orthod. 2013; 35: 341–346.

29.

Foo

, Sampson

, Roberts

, Jamieson

, David

General health-related quality of life and oral health impact among Australians with cleft compared with population norms; age and gender differences. Cleft Palate Craniofac J. 2012; 49: 406–413.

30.

Griffiths

C.R.

, Williamson

H.M.

, Rumsey

The romantic experiences of adolescents with a visible difference: exploring concerns, protective factors and support needs. J Health Psychol. 2012: 17; 1053–1064.

31.

Hamlet

, Harcourt

Older adults' experiences of living with cleft lip and palate: a qualitative study exploring aging and appearance. Cleft Palate Craniofac J. 2015; 52: e32–e40.

32.

Hebl

M.R.

, Kleck

R.E.

The social consequences of physical disability. In: Fleck

R.E.

, Hetherton

T.F.

, Hull

, Hebl

, eds. The Social Psychology of Stigma. New York: Guilford; 2000: 419–440.

33.

Heller

, Tidmarsh

, Pless

I.B.

Psychological functioning of young adults born with cleft lip or palate: a follow-up study. Clin Pediatr. 1981; 20: 459–465.

34.

Howitt

, Cramer

Introduction to Research Methods in Psychology. 3rd ed. Essex, UK: Pearson Education Limited; 2011.

35.

Hunt

, Burden

, Hepper

, Johnston

The psychosocial effects of cleft lip and palate: a systematic review. Eur J Orthod. 2005; 27: 274–285.

36.

Hutchinson

, Wellman

M.A.

, Noe

D.A.

, Kahn

The psychosocial effects of cleft lip and palate in non-Anglo populations: a cross-cultural meta-analysis. Cleft Palate Craniofac J. 2011; 48: 497–508.

37.

Kapp-Simon

K.A.

Psychological interventions for the adolescent with cleft lip and palate. Cleft Palate Craniofac J. 1995; 32: 104–108.

38.

Klassen

A.F.

, Tsangaris

, Forrest

C.R.

, Wong

K.W.Y.

, Pusic

A.L.

, Cano

S.J.

, Syed

, Dua

, Kainth

, Johnson

. Quality of life of children treated for cleft lip and/or palate: a systematic review. J Plast Reconstr Aesthet Surg. 2012; 65: 547–557.

39.

Lansdown

, Rumsey

, Bradbury

, Carr

, Partridge

Visibly Different: Coping With Disfigurement. London: Hodder Arnold; 1997.

40.

MacGregor

F.C.

Transformation and Identity: The Face and Plastic Surgery. New York: Quadrangle/New York Times Books; 1974.

41.

Mani

, Carlsson

, Marcusson

Quality of life varies with gender and age among adults treated for unilateral cleft lip and palate. Cleft Palate Craniofac J. 2010; 47: 491–498.

42.

Marcusson

, Akerlind

, Paulin

Quality of life in adults with repaired complete cleft lip and palate. Cleft Palate Craniofac J. 2001; 38: 379–385.

43.

Marcusson

, Paulin

, Ostrup

Facial appearance in adults who had cleft lip and palate treated in childhood. Scand J Plast Reconstr Surg Hand Surg. 2002; 36: 16–23.

44.

McWilliams

B.J.

, Paradise

L.P.

Educational, occupational and marital status of cleft palate adults. Cleft Palate Craniofac J. 1973; 10: 223–229.

45.

Morse

J.M.

, Richards

Read Me First for a User's Guide to Qualitative Methods. London: Sage; 2002.

46.

Moss

T.P.

The relationship between objective and subjective ratings of disfigurement severity and psychological adjustment. Body Image. 2005; 2: 151–159.

47.

Munz

S.M.

, Edwards

S.P.

, Inglehart

M.R.

Oral health-related quality of life and satisfaction with treatment and treatment and treatment outcomes of adolescents/young adults with cleft lip/palate: an exploration. Int J Oral Maxillofac Surg. 2011; 40: 790–796.

48.

Nelson

P.A.

Qualitative approaches in craniofacial research. Cleft Palate Craniofac J. 2009; 46: 245–251.

49.

Noar

J.H.

Questionnaire survey of attitudes and concerns of patients with cleft lip and palate and their parents. Cleft Palate Craniofac J. 1991; 28: 279–284.

50.

Nopoulos

, Berg

, van Demark

, Richman

, Canady

, Andreasen

N.C.

Cognitive dysfunction in adult males with nonsyndromic clefts of the lip and/or palate. Neuropsychologia. 2002; 40: 2178–2184.

51.

O'Hanlon

, Camic

P.M.

, Shearer

Factors associated with parental adaptation to having a child with a cleft lip and/or palate: the impact of parental diagnosis. Cleft Palate Craniofac J. 2012; 49: 718–729.

52.

Ong

, Clarke

, White

, Johnson

, Withey

, Butler

P.E.

Does severity predict distress? The relationship between subjective and objective measures of appearance and psychological adjustment during treatment for facial lipoatrophy. Body Image. 2007; 4: 239–248.

53.

Oosterkamp

B.C.M.

, Dljkstra

P.U.

, Remmelink

H.J.

, van Oort

R.P.

, Goorhuls-Brouwer

S.M.

, Sandham

, de Bont

L.G.M.

Satisfaction with treatment outcome in bilateral cleft lip and palate patients. Int J Oral Maxillofac Surg. 2007; 36: 890–895.

54.

Patel

, Ross

Reflections on the cleft experience by South African adults: use of qualitative methodology. Cleft Palate Craniofac J. 2003; 40: 471–480.

55.

Persson

, Becker

, Svensson

Academic achievement in individuals with cleft: a population-based register study. Cleft Palate Craniofac J. 2012; 49: 153–159.

56.

Peter

J.P.

, Chinsky

R.R.

Sociological aspects of cleft palate adults: marriage. Cleft Palate Craniofac J. 1974; 11: 295–309.

57.

Peter

J.P.

, Chinsky

R.R.

Sociological aspects of cleft palate adults: vocational and economic aspects. Cleft Palate J. 1975; 12: 193–199.

58.

Pisula

, Lukowska

, Fudalej

P.S.

Self-esteem, coping styles and quality of life in Polish adolescents and young adults with unilateral cleft lip and palate. Cleft Palate Craniofac J. 2014; 51: 290–299.

59.

Queiroz Herkath

A.P.

, Herkath

F.J.

, Rebelo

M.A.

, Vettore

M.V.

Measurement of health-related and oral health-related quality of life among individuals with nonsyndromic orofacial clefts: a systematic review and meta-analysis. Cleft Palate Craniofac J. 2015; 52: 157–172.

60.

Ramstad

, Ottem

, Shaw

W.C.

Psychosocial adjustment in Norwegian adults who had undergone standardised treatment of complete cleft lip and palate: education, employment and marriage. Scand J Plast Reconstr Surg Hand Surg. 1995a; 29: 251–257.

61.

Ramstad

, Ottem

, Shaw

W.C.

Psychosocial adjustment in Norwegian adults who had undergone standardised treatment of complete cleft lip and palate: self-reported problems and concerns with appearance. Scand J Plast Reconstr Hand Surg. 1995b; 29: 329–336.

62.

Reekie

The effect of South Asian ethnicity on satisfaction with primary cleft lip and/or palate repair. J Plast Reconstr Aesthet Surg. 2011; 64: 189–194.

63.

Roberts

R.M.

, Mathias

J.L.

Psychosocial functioning in adults with congenital craniofacial conditions. Cleft Palate Craniofac J. 2012; 49: 276–285.

64.

Rumsey

, Bull

, Gahagen

A preliminary study of the potential of social skills training for improving the quality of social interaction for the facially disfigured. Social Behaviour. 1986; 1: 143–145.

65.

Rumsey

, Stock

N.M.

Living with a cleft: psychological challenges, support and intervention. In: Berkowitz

, ed. Cleft Lip and Palate: Diagnosis and Management. 3rd ed. Berlin: Springer-Verlag; 2013; 907–915.

66.

Sandy

, Williams

, Mildinhall

, Murphy

, Bearn

, Shaw

, Sell

, Devlin

, Murray

The Clinical Standards Advisory Group (CSAG) cleft lip and palate study. Br J Orthod. 1998; 25: 21–30.

67.

Sarwer

D.B.

, Bartlett

S.P.

, Whitaker

L.A.

, Paige

K.T.

, Pertschuk

M.J.

, Wadden

T.A.

Adult psychological functioning of individuals born with craniofacial anomalies. Plast Reconstr Surg. 1999; 103: 412–418.

68.

Semb

, Brattstrom

, Molsted

, Prahl-Andersen

, Zuurbier

, Rumsey

, Shaw

W.C.

The Eurocleft study: intercentre study of treatment outcome in patients with complete cleft lip and palate. Part 4: relationship among treatment outcome, patient/parent satisfaction and the burden of care. Cleft Palate Craniofac J. 2005; 42: 83–92.

69.

Sinko

, Jagsch

, Prechtl

, Watzinger

, Hollmann

, Baumann

Evaluation of esthetic, functional and quality of life outcome in adults cleft lip and palate patients. Cleft Palate Craniofac J. 2005; 42: 355–361.

70.

Slevec

, Tiggemann

Attitudes toward cosmetic surgery in middle-aged women: body image, aging, anxiety and the media. Psychol Women Q. 2010; 34: 65–74.

71.

Stock

N.M.

, Rumsey

Parenting a child with a cleft: the father's perspective. Cleft Palate Craniofacial J. 2015a; 52: 31–43.

72.

Stock

N.M.

, Rumsey

Starting a family: the experience of parents with cleft lip and/or palate. Cleft Palate Craniofac J. 2015b; 52: 425–436.

73.

Strauss

R.P.

“Only skin deep”: health, resilience and craniofacial care. Cleft Palate Craniofac J. 2001; 38: 226–230.

74.

Swami

Body appreciation, media influence and weight status predict consideration of cosmetic surgery among female undergraduates. Body Image. 2009; 6: 315–317.

75.

Swami

, Arteche

, Chamorro-Premuzic

, Furnham

, Stieger

, Haubner

, Voracek

Looking good: factors affecting the likelihood of having cosmetic surgery. Eur J Plast Surg. 2008; 30: 211–218.

76.

Tatum

S.A.

, Losquadro

W.D.

Advances in craniofacial surgery. Arch Facial Plast Surg. 2008; 10: 376–380.

77.

Turner

S.R.

, Thomas

P.W.N.

, Dowell

, Rumsey

, Sandy

J.R.

Psychological outcomes amongst cleft patients and their families. Br J Plast Surg. 1997; 50: 1–9.

78.

Vargo

J.K.

, Gladwin

, Ngan

Association between ratings of facial attractiveness and patients' motivation for orthognathic surgery. Orthod Craniofac Res. 2003; 6: 63–71.

79.

Yardley

Dilemmas in qualitative health research. Psychol Health. 2000; 15: 215–228.

80.

Yttri

J.E.

, Christensen

, Knudsen

L.B.

, Bille

Reproductive patterns among Danish women with oral clefts. Cleft Palate Craniofac J. 2011; 48: 601–607.