Families and Mental Disorders: From Burden to Empowerment PDF
Preview Families and Mental Disorders: From Burden to Empowerment
Families and Mental Disorders FamiliesandMentalDisorders:FromBurdentoEmpowerment.EditedbyNormanSartorius,Julian Leff,JuanJose´ Lo´pez-Ibor,MarioMajandAhmedOkasha Copyright2005JohnWiley&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, WestSussexPO198SQ,England Telephone(+44)1243779777 Email(forordersandcustomerserviceenquiries):[email protected] VisitourHomePageonwww.wileyeurope.comorwww.wiley.com AllRightsReserved.Nopartofthispublicationmaybereproduced,storedinaretrieval systemortransmittedinanyformorbyanymeans,electronic,mechanical,photocopying, recording,scanningorotherwise,exceptunderthetermsoftheCopyright,DesignsandPatents Act1988orunderthetermsofalicenceissuedbytheCopyrightLicensingAgencyLtd,90 TottenhamCourtRoad,LondonW1T4LP,UK,withoutthepermissioninwritingofthe Publisher.RequeststothePublishershouldbeaddressedtothePermissionsDepartment,John Wiley&SonsLtd,TheAtrium,SouthernGate,Chichester,WestSussexPO198SQ,England,or [email protected],orfaxedto(+44)1243770620. 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OtherWileyEditorialOffices JohnWiley&SonsInc.,111RiverStreet,Hoboken,NJ07030,USA Jossey-Bass,989MarketStreet,SanFrancisco,CA94103-1741,USA Wiley-VCHVerlagGmbH,Boschstr.12,D-69469Weinheim,Germany JohnWiley&SonsAustraliaLtd,33ParkRoad,Milton,Queensland4064,Australia JohnWiley&Sons(Asia)PteLtd,2ClementiLoop#02-01,JinXingDistripark,Singapore 129809 JohnWiley&SonsCanadaLtd,22WorcesterRoad,Etobicoke,Ontario,CanadaM9W1L1 Wileyalsopublishesitsbooksinavarietyofelectronicformats.Somecontentthatappearsin printmaynotbeavailableinelectronicbooks. BritishLibraryCataloguinginPublicationData AcataloguerecordforthisbookisavailablefromtheBritishLibrary ISBN0-470-02382-1 Typesetin10/12ptPalatinobyDobbieTypesettingLimited,Devon. PrintedandboundinGreatBritainbyT.J.InternationalLtd,Padstow,Cornwall Thisbookisprintedonacid-freepaperresponsiblymanufacturedfromsustainableforestry inwhichatleasttwotreesareplantedforeachoneusedforpaperproduction. ________________________________________________________________________________________________________________ ____________________________ 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 Copyright2005JohnWiley&Sons,Ltd.ISBN:0-470-02382-1
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