Adolescents with a diagnosis of Anorexia
Nervosa (AN): primary caregivers’
experience of recognition and decisions
around initial help-seeking
Samuel Thomson, ST6 Child and Adolescent
Psychiatry
Collaborators Michael Marriott, Jo
McLaughlin, Katherine Telford, Hou Law,
Kapil Sayal
Idea development
• Rarely present themselves
• Onus on parents
• Duration of illness related to outcome (Rosenvinge &
Mouland, 1990; Steinhausen, 2002; Ratnasuriya et
al., 1991)
• DUED, c.f. DUP
Springboard
• Childhood Onset Anorexia Nervosa: The Experience
of Parents (Bryant-Waugh et al., 2004).
• Theme > ‘slow recognition’
Aim
• Main caregivers’ experiences of:
• Recognition
• Decision to seek help
Methodology
• 8 retrospective semi-structured interviews with
primary caregiver
• 1 hour
• Audio-recorded
• Transcribed verbatim
Inclusion criteria
• 11-18 years at time of referral to CAMHS
• Broadly defined anorexia nervosa in past 3 years
• Great Ormond Street (GOS) Diagnostic Checklist*
(Bryant-Waugh & Kaminski 1996)
Analysis
•
•
•
•
Themes systematically identified from data
Inductive (IPA)
No a priori assumptions
Credibility checks
Participant demographics
Participant demographics
Caregiver
Gender
Age
(years)
7
Female;
1 Male
Middle
descriptor
1 3039; 4
40-49;
3 50-59
Ethnicity
Religion
Living
arrangements
Partners’
status
Employment
status
7 White
British;
1 White
Irish
1 Catholic;
2 Church
of
England;
5 None
6 Living with
partner;
2 Not living
with partner
3 Dad; 2
step-dad;
1 Mum; 2
N/A
6 Employed;
1 selfemployed; 2
Carers
Modal
age
range=
40-49
Note; all figures refer to data as correct at time of interview
Child
Gender
6
Female
;2
Male
Age
(years)
Ethnicity
Referrer
1-11
1-12
1-13
1-14
1-16
2-17
1-18
8 White
British
6 GP; 1
Psychol
ogist; 1
Paediatri
cian
Mean
14.75
Time
lag pre
helpseeking
Length of
time
under
CAMHS
4
months,
4
months,
4
months,
12
months,
15
months,
19
months,
24
months,
30
months
Mean =
14
months
Results
•
•
•
•
Normalisation
Ambivalence/Ambiguity
Decision Point
Relationships
Normalisation
• Initial weight loss positive or related to normal
adolescent development
• Noticed child’s rigidity around food
• Cautious not to pressure their children
• Expected weight loss to be short-lived
Ambivalence/Ambiguity
•
•
•
•
•
•
Denial
Incomprehensible
Suspicions grew → watched closely
Build up evidence
Secrecy
Research
Decision Point
• Unsuccessful attempts to reason with or reward their
children
• Chronic failure → help-seeking
• Holidays exposed pathology
• Wanted acknowledgement of the seriousness of the
situation and prompt action since they feared for their
child’s life
• Disappointed by further attempts to contain
• Catch 22
Relationships
•
•
•
•
•
•
Avoidance of conflict
Betrayal
Powerlessness
Positive and negative effects on family
Isolated by negative + simplistic responses of others
Stigma
Conclusions
• Parents require advice and support to confirm their
suspicions.
• Otherwise parents are left to accumulate concerns
and often approach professional help at a late stage
• Reliable information sources may help equip parents
to clarify early concerns
• Since parents commonly approached the Internet for
guidance, improving awareness of useful and
accurate web-sites could reduce delays in help
seeking
*Great Ormond Street Diagnostic Checklist
1. Determined food avoidance
2. Weight loss or failure to gain weight during the period of pre-adolescent growth (10 – 14 years) in the absence
of any physical or other mental illness.
3. Any two or more of the following:
(a) preoccupation with body weight
(b) preoccupation with energy intake
(c) distorted body image
(d) fear of fatness
(e) self-induced vomiting
(f) extensive exercising
(g) purging (laxative abuse)
References
•
•
•
•
Bryant-Waugh, R., Cottee-Lane, D. & Pistrang N. (2004). Childhood Onset
Anorexia Nervosa: The Experience of Parents. European Eating Disorders
Review, 12, 169-177.
Ratnasuriya, R. H., Eisler, I., Szmukler G. I. & Russell G. F. (1991). Anorexia
nervosa: outcome and prognostic factors after 20 years. The British Journal of
Psychiatry, 158, 495-502.
Rosenvinge, J. H. & Mouland S. O. (1990). Outcome and prognosis of anorexia
nervosa. A retrospective study of 41 subjects. The British Journal of Psychiatry,
156, 92-97.
Steinhausen, H-C. (2002). The Outcome of Anorexia Nervosa in the 20th
Century. American Journal of Psychiatry, 159:8, 1284-1293.
Thanks
• samuelthomson@live.co.uk