Families and Mental Disorders: From Burden to Empowerment

302 Pages·2004·1.495 MB·English

Families and
Mental Disorders
FamiliesandMentalDisorders:FromBurdentoEmpowerment.EditedbyNormanSartorius,Julian
Leff,JuanJose´ Lo´pez-Ibor,MarioMajandAhmedOkasha
Copyright2005JohnWiley&Sons,Ltd.ISBN:0-470-02382-1
Families and
Mental Disorders
From Burden to
Empowerment
Edited by
Norman Sartorius
University of Geneva, Switzerland
Julian Leff
Royal Free and University College Medical School,
London, UK
Juan Jose´ Lo´pez-Ibor
Complutense University of Madrid, Spain
Mario Maj
University of Naples, Italy
Ahmed Okasha
Ain Shams University, Cairo, Egypt
Copyrightu2005 JohnWiley&SonsLtd,TheAtrium,SouthernGate,Chichester,
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Contents
List of Contributors vii
Preface ix
Chapter 1 Families of People with Schizophrenia 1
Christine Barrowclough
Chapter 2 Families of People with Dementia 25
Henry Brodaty
Chapter 3 Families of People with Major Depression 55
Julian Leff
Chapter 4 Families of People with Bipolar Disorder 69
Gabor I. Keitner, Christine E. Ryan and Alison Heru
Chapter 5 Families of People with a Severe
Anxiety Disorder 87
Gail Steketee and Jason Fogler
Chapter 6 Families of People with an Eating Disorder 113
Palmiero Monteleone, Janet Treasure,
Paolo Santonastaso, Angela Favaro and
Francesca Brambilla
Chapter 7 Families of Children with a Mental Disorder 127
Simon G. Gowers and Claudine Bryan
Chapter 8 Families of People with Drug Abuse 161
A. Hamid Ghodse and Susanna Galea
Chapter 9 The Role of Family Organizations
in Mental Health Care 195
Margaret Leggatt
Chapter 10 Research on Burden and Coping Strategies
in Families of People with Mental Disorders:
Problems and Perspectives 217
Elizabeth Kuipers and Paul E. Bebbington
vi ___________________________________________________________________________________________ CONTENTS
Chapter 11 Research on Family Interventions for
Mental Disorders: Problems and Perspectives 235
Ian R.H. Falloon
Chapter 12 From Burden to Empowerment:
The Journey of Family Caregivers in India 259
Radha Shankar and Kiran Rao
Index 291
________________________________________________________________________________________________________________
____________________________
Contributors
Christine Barrowclough Academic Division of Clinical Psychology,
School of Psychological Sciences, University of Manchester, Education &
Research Centre (2nd Floor), Wythenshawe Hospital, Manchester M23
9LT, UK
Paul E. Bebbington Department of Mental Health Sciences, Royal Free
and University College London Medical School, 48 Riding House Street,
London W1N 8AA, UK
Francesca Brambilla Department of Psychiatry, University of Naples
SUN, Largo Madonna delle Gzazie, 80138 Naples, Italy
Henry Brodaty Academic Department of Psychogeriatrics, University of
New South Wales, Euroa Centre, Prince of Wales Hospital, Randwick,
NSW 2031, Australia
Claudine Bryan Section of Adolescent Psychiatry, Academic Unit,
University of Liverpool, 79 Liverpool Road, Chester CH2 1AW, UK
IanR.H.Falloon DepartmentofPsychiatry,UniversityofAuckland,Park
Road, Auckland, New Zealand
Angela Favaro Department of Neuroscience, Psychiatric Clinic, Via
Giustiniani 3, 35128 Padova, Italy
JasonFogler BostonUniversitySchoolofSocialWork,264BayStateRoad,
Boston, MA 02215, USA
Susanna Galea Department of Mental Health Sciences, St. George’s
Hospital Medical School, Cranmer Terrace, London SW1 0RE, UK
A. Hamid Ghodse St George’s Hospital Medical School, University of
London, International Centre for Drug Policy, 6th Floor Hunter Wing,
Cranmer Terrace, London SW17 0RE, UK
Simon G. Gowers Section of Adolescent Psychiatry, Academic Unit,
University of Liverpool, 79 Liverpool Road, Chester CH2 1AW, UK
Alison Heru Department of Psychiatry and Human Behavior, Box G-BH,
Brown University, Providence, RI 02912-G, USA
viii _________________________________________________________________________________ CONTRIBUTORS
Gabor I. Keitner Department of Psychiatry, Rhode Island Hospital, 593
Eddy St, Potter Bldg, 3rd Floor, Providence, RI 02903, USA
Elizabeth Kuipers Department of Psychology, Box PO77, Institute of
Psychiatry, King’s College London, De Crespigny Park, Denmark Hill,
London SE5 8AF, UK
Julian Leff Department of Mental Health Sciences, Royal Free and
University College Medical School, London and TAPS Research Unit, 69
Fleet Street, London NW3 2QU, UK
Margaret Leggatt World Fellowship for Schizophrenia and Allied
Disorders, 29 Mary Street, North Carlton, Victoria 3054, Australia
Palmiero Monteleone Department of Psychiatry, University of Naples
SUN, Largo Madonna delle Grazie, 80138 Naples, Italy
Kiran Rao NIMHANS, Hosur Road, Bangalore 560029, India
Christine E. Ryan Department of Psychiatry and Human Behavior, Box
G-RIH, Brown University, Providence, RI 02912-G, USA
Paolo Santonastaso Department of Neuroscience, Psychiatric Clinic, Via
Giustiniani 3, 35128 Padova, Italy
RadhaShankar 16FirstCrossStreet,IndiraNagar,Chennai600020,India
Gail Steketee Boston University School of Social Work, 264 Bay State
Road, Boston, MA 02215, USA
Janet Treasure Department of Psychiatry, King’s College London, 5th
Floor, Thomas Guy House, Guy’s Hospital, London SE1 9RT, UK
________________________________________________________________________________________________________________
____________________________
Preface
The presencein afamilyof apersonwith a severemental disorderisoften
associated with a significant objective and subjective burden on the other
family members, especiallythosewho have a caregivingrole. The entity of
this burden depends on several factors, including the relative’s age and
gender, the quality of his/her premorbid relationship with the patient,
the nature of the patient’s problems, the coping strategies adopted by the
relative as well as his/her appraisal of the situation and perception of the
patient’sillness,theemotionalandpracticalsupportavailabletothefamily,
and cultural and ethnic variables. An important component of the family
burden are the consequences of the stigma attached to mental illness:
stigmadoesnotstopatthosewhoareclosetothepatient;itextendsacross
generationsandreachesfarawaypartsoffamilies.Theburdenexperienced
by the family members may not only affect their own mental and physical
well-being, but also have an impact on the course of the patient’s disorder
(well documented especially in the case of schizophrenia).
In the past, the family of a patient with a severe mental disorder was
often blamed for the patient’s disease and deliberately excluded from its
management. Today, this happens more rarely, but the emotional and
practical problems experienced by the relatives of people with severe
mentaldisordersarenotalwaysamajorfocusofattentionformentalhealth
services. The family is not always provided with sufficient information on
thepatient’sconditionandhowtodealwithit.Theinvolvementoffamilies
in structured intervention programmes is still rare, in spite of the research
evidence that family-based interventions have a positive impact on the
outcome of several mental disorders. Self-help groups based on mutual
support, usually initiated by family organizations, are still not extensively
available and are attended by a limited number of families, in spite of the
emerging evidence of their usefulness.Legal provisions that could support
the families are only rarely in place, and health and social services usually
have no special provision for work with families of people with mental
illness and for their support.
This volume portrays what is defined in one of its chapters ‘‘the journey
of families from burden to empowerment’’, currently ongoing in several
countriesoftheworld. Anoverview isprovided ofthevariousdimensions
offamilyburden,aswellasofthepossiblepositiveconsequencesofcaring
for a person with a severe mental disorder, in terms of development of
x ______________________________________________________________________________________________ PREFACE
personal attitudes and skills, increase of self-confidence and strengthening
of family bonds. The variables which modulate family burden (with a
special focus on relatives’ coping strategies, appraisal and illness percep-
tion) are described. Family-based interventions available for the various
mentaldisordersarereviewed,includingtheevidenceoftheireffectiveness,
the barriers to their implementation and the methodological problems of
the relevant research. The recent achievements of family organizations in
developed as well as developing countries are outlined.
A distinctive feature of the volume is its focus on all the most prevalent
mental disorders, including those—such as anxiety disorders, eating
disorders and childhood mental disorders—which have been rarely
consideredinthisspecificcontext.Substanceabuse,aremarkablyneglected
area as far as family problems are concerned, is also covered.
Wehopethatthisbookwillcontributetosensitizenotonlypsychiatrists,
but all mental health professionals, to a dimension of mental health care
whichhasbeenneglectedforfartoolong,althoughitholdsamajorpromise
of improvement of quality of life of patients and all thoseinvolved in their
care.
Norman Sartorius
Julian Leff
Juan Jose´ Lo´pez-Ibor
Mario Maj
Ahmed Okasha
This volume includes several chapters developed from presentations
delivered at the 12th World Congress of Psychiatry (Yokohama, Japan,
24–29 August, 2002).
_________________________________________________________________________________________________ CHAPTER
1
_________________________
Families of People
with Schizophrenia
Christine Barrowclough
SchoolofPsychological Sciences,University ofManchester, UK
INTRODUCTION
Families playan essentialrole in supporting peoplewith long-term mental
illnessinthecommunityandarefocalinthesocialnetworksofpeoplewith
schizophrenia [1]. Over 60% of thosewithafirst episodeofa majormental
illness return to live with relatives [2], and this would seem to reduce only
by 10–20% when those with subsequent admissions are included [3]. The
carer role is often not without difficulties, and may be associated with
considerable personal costs. In schizophrenia, many family members
experience significant stress and subjective burden as a consequence of
theircaregiverrole.Notonlyissuchstresslikelytoaffectthewell-beingof
therelativesandcompromisetheirlong-termabilitytosupportthepatient,
but it may also have an impact on the course of the illness itself and on
outcomes for the client. This chapter describes research which has
examinedtheimpactofschizophreniaonfamiliesandtheimpactoffamily
stress on patient outcomes. It then outlines the background to the
development of family interventions in schizophrenia, summarizes the
research findings including the evidence base for such interventions, and
concludesbydrawingattentiontoimportantareasforfuturedevelopment.
THE IMPACT OF SCHIZOPHRENIA ON FAMILIES
Approximately 1% of the population worldwide will suffer from schizo-
phrenia in their lifetime, with the onset of the illness occurring usually in
late adolescence or early adulthood. Schizophrenia is characterized by a
rangeofsymptoms.Althoughtherearelargevariationsinpresentation,itis
usuallyassociatedwithseveredisruptionstoasufferer’sfunctioning.First,
FamiliesandMentalDisorders:FromBurdentoEmpowerment.EditedbyNormanSartorius,Julian
Leff,JuanJose´ Lo´pez-Ibor,MarioMajandAhmedOkasha
Copyright2005JohnWiley&Sons,Ltd.ISBN:0-470-02382-1