AmericanJournal of Orthopsychiatry 2004, Vol. 74, No.3, 383-388 Copyright 2004 by the Educational Publishing Foundation 0002-9432/04/$12.00 DOl: 10.1037/0002-9432.74.3.383 The SMILES Program: A Group Program for Children With Mentally III Parents or Siblings Erica Pitman,AdvDipAppSocSc Bathurst,New SouthWales, Australia Stephen Matthey, MPsych, PhD SouthWest Sydney Area Health Service The Simplifying Mental Illness + Life Enhancement Skills program, for children with a mentally ill parent or sibling, is a 3-day program that aims to increase children's knowledge of mental illness and to better equip them with life skills considered beneficial for coping in their family. Self-report data from 25 children who attended 3 of these programs, in Canada and Australia, indicate that these aims were achieved. Their parents also report benefits for their children. The lifetime prevalence of mental disorders in adults has been estimated to be somewhere between 50%and60% (cf. Mordach & Hall, 2002), and about half of all adultswith a mental illness care for a child (Gopfert,Webster, & Seeman, 1996).In Sweden, up to abouta third of adults admitted to a psychiatric hospital havechildrenunder the ageof 18 (Ostman & Hansson, 2002). In Australia, Cowling, McGorry, and Hay (1995) have estimated that there may be 27,000childrenwho have a parentwith a serious mentalillness. The needs, however, of children with parents who have a serious mental illness (e.g., psychosis) have for a long time been underrecognized. Mordach and Hall (2002) considered that current research has failed to focus on issues from the child's perspective. Understanding the child's perspective is important, given that research has shownthat, often, suchchil- drenmanage to hide their feelingsand havemiscon- ceptionsabouttheir parent's illness (Marsh & Dick- ens,1997). Thesechildrenhave been shown to have worries specific to their family situation-concerns Erica Pitman,AdvOipAppSocSc, independent practice, Bathurst,New South Wales, Australia; Stephen Matthey, MPsych, PhO, South West Sydney Area Health Service, Sydney, New South Wales, Australia. We thank Mental Illness Education-Australia (New South Wales) Inc. for their administrative support over many years, Fairchild Australia Proprietary Ltd. for their generous donations, and the following services who were involved in the delivery of the SMILES program in their areas:Fairfield Mental Health Service,New SouthWales; Orange Community Health Service, New South Wales; CLSC Lac-Saint-Louis (Montreal, Quebec, Canada). For reprints and correspondence: Erica Pitman, AdvOipAppSocSc, independent practice, 253 Keppel Street, Bathurst, New South Wales 2795,Australia.E-mail: [email protected]such as whether they, too, will develop the same illness as their parent, whethertheir parentwill need to be in hospital permanently, and whether they are the causeof their parent's mental health problems (Gerace, Camilleri, & Ayres, 1993;Marsh,Appleby, Dickens, Owens, & Young, 1993). Despitesuch spe- cific concerns, there is evidencethat the psycholog- ical needs of children of mentally ill adultsare often not met. Caton, Cournos, Felix, and Wyatt (1998) found that only half of their sampleof 39 offspring (aged between13 and 48) of psychiatrically ill par- entshad everspoken with a health professional about their parent's illness,whereasOstman and Hansson (2002) found that just over half of the well spouses in their sample considered that their child neededfur- ther professional support related to the otherparent's mental illness. The issue of support for thesechildrenis therefore paramount. As with manyongoing stressors, individ- uals are reluctant to disclosetheir family situation to others for fear of the attached stigma.This results in a sense of isolation for the child, and the burden of responsibilityfor dealing with the day-to-daydiffi- culties of having a mentally ill parent can often rest solely with the child or his or her siblings. The argument for supportiveservices to help these chil- dren, and their families, has understandably therefore been raised. Byrne et al. (2001), in a Canadian study of families with a parentwith an affective disorder, found that many of the participants wanted their whole family involved in the treatment, not just the adult with the illness. In a review of servicesand studiesprovided for this population, the Australian Infant, Child, Adoles- cent and Family Mental Health Association(2001; AICAFMHA) summarized the recommendations of previous reports. These recommendations include providing the child with education regarding mental 383
Transcript
American Journal of Orthopsychiatry2004, Vol. 74, No.3, 383-388 Copyright 2004 by the Educational Publishing Foundation
The SMILES Program: A Group Program for ChildrenWith Mentally III Parents or Siblings
Erica Pitman, AdvDipAppSocScBathurst, New South Wales, Australia
Stephen Matthey, MPsych, PhDSouth West Sydney Area Health Service
The Simplifying Mental Illness + Life Enhancement Skills program, for children with a mentallyill parent or sibling, is a 3-day program that aims to increase children's knowledge of mentalillness and to better equip them with life skills considered beneficial for coping in their family.
Self-report data from 25 children who attended 3 of these programs, in Canada and Australia,indicate that these aims were achieved. Their parents also report benefits for their children.
The lifetime prevalence of mental disorders inadults has been estimated to be somewhere between50% and 60% (cf. Mordach & Hall, 2002), and abouthalf of all adults with a mental illness care for a child(Gopfert, Webster, & Seeman, 1996). In Sweden, upto about a third of adults admitted to a psychiatrichospital have children under the age of 18 (Ostman &Hansson, 2002). In Australia, Cowling, McGorry,and Hay (1995) have estimated that there maybe 27,000 children who have a parent with a seriousmental illness.
The needs, however, of children with parents whohave a serious mental illness (e.g., psychosis) havefor a long time been underrecognized. Mordach andHall (2002) considered that current research hasfailed to focus on issues from the child's perspective.Understanding the child's perspective is important,given that research has shown that, often, such chil-dren manage to hide their feelings and have miscon-ceptions about their parent's illness (Marsh & Dick-ens, 1997). These children have been shown to haveworries specific to their family situation-concerns
Erica Pitman, AdvOipAppSocSc, independent practice,Bathurst, New South Wales, Australia; Stephen Matthey,MPsych, PhO, South West Sydney Area Health Service,Sydney, New South Wales, Australia.
We thank Mental Illness Education-Australia (NewSouth Wales) Inc. for their administrative support overmany years, Fairchild Australia Proprietary Ltd. for theirgenerous donations, and the following services who wereinvolved in the delivery of the SMILES program in theirareas: Fairfield Mental Health Service, New South Wales;Orange Community Health Service, New South Wales;CLSC Lac-Saint-Louis (Montreal, Quebec, Canada).
For reprints and correspondence: Erica Pitman,AdvOipAppSocSc, independent practice, 253 KeppelStreet, Bathurst, New South Wales 2795, Australia. E-mail:[email protected]
such as whether they, too, will develop the sameillness as their parent, whether their parent will needto be in hospital permanently, and whether they arethe cause of their parent's mental health problems(Gerace, Camilleri, & Ayres, 1993; Marsh, Appleby,Dickens, Owens, & Young, 1993). Despite such spe-cific concerns, there is evidence that the psycholog-ical needs of children of mentally ill adults are oftennot met. Caton, Cournos, Felix, and Wyatt (1998)found that only half of their sample of 39 offspring(aged between 13 and 48) of psychiatrically ill par-ents had ever spoken with a health professional abouttheir parent's illness, whereas Ostman and Hansson(2002) found that just over half of the well spouses intheir sample considered that their child needed fur-ther professional support related to the other parent'smental illness.
The issue of support for these children is thereforeparamount. As with many ongoing stressors, individ-uals are reluctant to disclose their family situation toothers for fear of the attached stigma. This results ina sense of isolation for the child, and the burden ofresponsibility for dealing with the day-to-day diffi-culties of having a mentally ill parent can often restsolely with the child or his or her siblings. Theargument for supportive services to help these chil-dren, and their families, has understandably thereforebeen raised. Byrne et al. (2001), in a Canadian studyof families with a parent with an affective disorder,found that many of the participants wanted theirwhole family involved in the treatment, not just theadult with the illness.
In a review of services and studies provided forthis population, the Australian Infant, Child, Adoles-cent and Family Mental Health Association (2001;AICAFMHA) summarized the recommendations ofprevious reports. These recommendations includeproviding the child with education regarding mental
383
384PITMAN AND MATTHEY
illness and helping children develop resilience andcoping skills. Similar practice guidelines are given bythe Royal College of Psychiatrists (2002).
Luntz (1995); Cowling (1999); Hinden, Biebel,Nicholson, Henry, and Stier (2002); and the BritishColumbia Schizophrenia Society (2003; BCSS) havereviewed programs that include such aims for chil-dren of mentally ill parents. These programs aim toprovide support to the child, act as his or her advo-cate, increase the child's knowledge of the parent'smental illness, and improve the parent-child rela-tionship. Some programs have specific componentsfor separate members of the family, whereas othersare focused just on the children. Hinden et al. de-scribed five programs in the United States, such asthe Invisible Children's Program in Orange County,New York, whereas Cowling (1999) described sev-eral Australian programs, such as the Children andMentally III Parents Project (CHAMPS) camp (Cuff& Pietsch, 1997). BCSS (2003) briefly describedover 20 programs in Canada, the United States, andAustralia. Various positive outcomes have been re-ported for such programs, including reduced hospi-talization of parents, reduced denial of family prob-lems by the children, an increased capacity for thechild to share his or her concerns with the group, anincrease in the child's knowledge about mental ill-ness, and improved social skills. The outcome detailsof most programs, however, are only reported inin-house documents rather than in peer-reviewedjournals, which can therefore make it difficult forclinicians to access the information. Hinden et al.also discussed the lack of an empirically supportedevidence base for many of these services-thus, al-though most programs may report beneficial out-comes, few have empirical evidence to support theirclaims. We hope that the information reported in thisarticle, therefore, will supplement that from othersand provide empirical evidence that clinicians andthe community can use when deciding what is currentgood practice in helping children with a parent witha mental illness.
Greek, Sri Lankan). All the children had sufficient com-mand of English to participate in the program, althoughsome required assistance with completing the evaluationmeasures.
The diagnoses given to the parents by the referring healthworkers included affective disorders (n = 17; a mixture ofmajor depression with or without anxiety disorders or bipo-lar disorder) and schizophrenia (n = 8). For 17 of theseparents, the diagnosed disorder had been present for morethan 5 years. In addition, 4 children had a sibling with a
diagnosed disorder; these were autism (n = I), obsessive-compulsive disorder (n = I), eating disorder (n = 1), andone not specified. All these sibling disorders were reportedto be for less than 5 years.
Fifteen of the children were living with both their par-ents, 7 lived with just the parent with the mental illness, 2lived with their nonmentally ill parent, and 1 lived withrelatives.
ProgramThe Simplifying Mental Illness + Life Enhancement
Skills (SMILES) program, designed by Erica Pitman, is forchildren aged 8 to 16 who have a parent or sibling experi-encing a mental health problem (i.e., schizophrenia, bipolardisorder, or depression). If there are sufficient numbers ofchildren, it can be run separately for two age groups (8-12and 13-16). In the data to be reported, one 5-year-old childparticipated in the program because her family had twoolder siblings enrolled in the program and wanted theiryoungest to be included.
The SMILES program is conducted over 3 consecutivedays, from 9 AM to 3 PM, usually during school holidays.The program aims to provide age-appropriate educationabout mental illness, teach life skills to improve the chil-dren's capacitY to cope more effectively and increase theirresilience, improve the children's self-expression and cre-ativitY, increase their self-esteem, and reduce their feelingsof isolation. The aims are achieved through education aboutmental illness, communication exercises, problem solving,artwork, music, interactive and relaxation exercises, andpeer support. On the 1st day the activities include familydrawings and communication exercises (e.g., the use of piecharts, inner-view exercises), education about mental ill-ness, and exercises to help relax during times of stress. Inaddition, there are games and singing to add some fun andfurther avenues for self-expression. On the 2nd day, there iscontinued education on mental health and illness, togetherwith more communication exercises, stress-reducing exer-cises, and problem-solving games. On the 3rd day, theactivities of the previous 2 days are repeated (with varia-tions), as well as a feelings story to help the childrenidentify and communicate emotions, and information aboutreferral sources in the communitY. On all 3 days the activ-ities are broken up with age-appropriate games and activi-ties that ensure it is an enjoyable group for the children. Forthe three programs to be reported, transport was providedfor the children to attend. Lunch and refreshments were also
Method
ParticipantsA total of 25 children between the ages of 5 and IS
(M = 10.8, SD = 2.0), from 18 families, participated in
three separate programs conducted in Australia (two pro-grams; n = 19) and Canada (one program; n = 6). Two
thirds of the children were girls, and II came from English-speaking backgrounds, with the remainder having a varietyof cultural backgrounds (e.g., Vietnamese, Cambodian,
CHILDREN WITH MENTALLY ILL PARENTS OR SIBLINGS 385
Table 1Mean Scores on the Knowledge and Skills Measures: Pre- and PostprogramRatings
Knowledge measureWhat is mental illness?What causes mental illness?What is schizophrenia?Signs of schizophreniaWhat is depression?Signs of depressionWhat is bipolar disorder?Signs of bipolar disorderWhat treatments help?
Life skills measureAbility to talk with peopleAbility to listen to other peopleAbility to express good feelingsAbility to express bad feelingsAbility to recognize my strengthsAbility to be creativeAbility to solve problemsAbility to relaxAbility to feel good about myselfAbility to have fun
Note. Ratings range ftom I to 10. On the knowledge measure, scores ranged ftom I = Iknow nothing at all to 10 = I know everything there is to know. On the life skills measure,scores ranged from I = I find it very hard to do to 10 = I find it really easy to do. r ph valuesof 0.3-0.49 indicate a moderate association, values of 0.5-0.69 indicate a substantialassociation, and values of 0.7 or more indicate a very strong association.tp<.IO. .p<.05. ..p<.OI. ...p<.OOI.
what they felt they had learned. At the end of Day 3, thefonn also included the following: "What else would havehelped you?" and "Sometime later you may feel you want totalk with someone. If you feel the need to do this, list somepeople you know you could contact to help you."
There was also a parent's feedback fonn, with open-ended questions about benefits, changes, concerns, or addi-tional comments they had regarding their children attendingthe program.
provided each day. The program was provided free to theparticipants.
For the program conducted in Canada, the parent with amental illness also participated in a parent program at thesame venue. On the 3rd day, the children and parentscombined for lunch and discussion.
Measures
Procedure
Erica Pitman facilitated each program, with one or twocofacilitators from the different services participating on atrain-the-trainer basis. Children were referred to the pro-gram by their parent's caseworker.
The knowledge and life skills measures were completedby the children at the start of the 1st day (preratings) andagain at the completion of the program (postratings). Facil-itators gave assistance in completing these by reading outthe questions and explaining the 1-10 scoring system. Theydid this to ensure the validity of the responses for thosechildren who might otherwise have had difficulty under-standing how to complete these instruments. In addition, thepostscores were made on the same sheet as the prescores.
A measure of the children's knowledge of mental illnesswas constructed for this program (the knowledge measure).This consisted of nine questions (e.g., "What causes mentalillness?"; see Table I), in response to which each child ratedthe amount he or she felt confident of the answer to thequestion on a I O-point scale (from I = I know nothing at allto 10 = I know everything there is to know).
A similar set of 10 questions was also constructed for thisprogram, which asked about the child's ability to use vari-ous life skills (the life skills measure; e.g., "My ability tosolve problems," "My ability to feel good about myself";see Table I). They also rated these on a I O-point scale (fromI = I find it very hard to do to 10 = I find it really easy to
do).A daily child's feedback form also asked about what the
children liked or did not like about the program and about
PITMAN AND MA lTHEY
We deliberately chose this method, even though a moreusual procedure in program evaluation is to ask respondentsto make postintervention ratings blind to their preinterven-tion ratings. We chose this method for two reasons: (a) Theshort pre-post time interval of 3 days would not be longenough to be confident that the children had forgotten whattheir preratings had been; therefore, if a separate form hadbeen used for the postratings, this would incorrectly assumethat the respondents were blind to their pre-ratings. (b) Weconsidered it important that the children make their postrat-ing knowing what their preratings had been, so that if theyfelt they now knew more, or less, they could ensure theirrating truly reflected this situation. This reduces the problemthat could be caused by not knowing what the reliabilities ofthe two measures are (knowledge measure and life skillsmeasure}-a difference score between the pre- and postrat-ings can therefore be interpreted more confidently as a realdifference and not a random fluctuation around the true
score.The child's feedback form was completed by the children
at the end of Days I and 2 and again at the end of Day 3with the additional two questions. The parent's feedbackform was mailed to the parents approximately 2 weeks after
the end of the program.
more. because Erica [the facilitator] has explained lotsof thIngs I was worried about"; "It was really fun andeveryone was ~nvolved [sic]"; "I am not the only onewho has a famIly member who is sick. It's not Dad's~au~t"; "It was fun doing the card and droring [sic]";I ltked the ~ames and meeting new people"; "I learnt
that mental Illness can't be caught like a cold. Andpeople. with schizophreniah [sic] can hear things andsee thIngs that aren't real and they have dollosion[sic] and hollusionations [sic]"; "I learnt that friends~re very important to us and some people with mentalIllness can lose or get weight"; "I have told otherchildren who don't know what they are talking aboutwhat depression really means"; "I learned a lot ofproblem solving at home"; "I learnt that it's [mentalillness] not our fault"; "It was good cause now I canexpress my fellings [sic] more-thanks!"; "I learntthat illegal drugs don't help"; and "I learnt that youcan call Kidshelp Phone instead of talking to your
parents, if your [sic] shy."The majority of children indicated that there
wasn't anything they didn't like about the program.There was the occasional comment about not liking
Results the food, singing, writing, meditating, or the hotweather (at the Australian site). The few additional
Of the 2S children, 17 attended all 3 days of the comments about things children disliked were asprogram, with the remainder attending 2 days. Rea- follows: "Rest time in the afternoon and having tosons for missing a day included illness, previous leave"; "Filling in sheets"; "The fact that I'm thecommitments, and parental illness that required the eldest"; "Embarrassed when I first arrived, cas [sic]child to help run the family business or look after the there weren't any little people" (from the S year old);parent "Sitting to [sic] long"; and "When we have to listen
Related t tests were used to assess any changes to people talk about their mother." The majority offrom preratings to postratings on the knowledge and children indicated that either there wasn't anythinglife skills measures, and the results from these are else that would have helped them or they didn'tshown in Table 1. know. Some of them indicated that they would have
On eight of the nine self-report questions concern- liked a 4-day or even longer program. The additionaling the child's knowledge of mental illness there was comments about further things that would help werea significant improvement by the end of the 3-day "How to deal with dethe [sic: death]" and "To get
program. On all of the questions regarding life skills more attached to my dad."there was also significant improvement in children's Only 7 of the 18 families returned their feedbackself-ratings. The point-biserial correlation coefficient forms (10 forms returned-three couples completed a(r pb) values indicate that these changes were not only form each). All of these felt the program had been
statistically significant but also clinically significant helpful for their child. Their comments about bene-
(Matthey, 1998). Inspection of Table 1 also shows fits, learning, and changes included the following:that for some questions there were considerable miss- "The program gave the children a real insight into theing data. This was primarily due to the children not hows and whys of depression at a level they couldattending either Day I or Day 3 and occasionally due understand"; "[My son] has adopted a caring attitudeto a participant failing to answer that question. that notices when I am feeling worse. He knows
The children's feedback form indicated that all the when to advise me what to do sometimes"; "Theparticipants felt the program was helpful. Some of the program was excellent and met [my son] where hiscomments written by the children in response to the understanding was"; "[My son] has a less frustratedquestion about what they liked most or what were the attitude at what I can't do"; "The student, throughthings they had learnt were as follows: "I know a lot this education program, is able to become more tol-
CHILDREN WITH MENTALLY ILL PARENTS OR SIBLINGS387
ratings. We accept, however, that this methodology isopen to debate.
As with all programs, there are also issues to dowith the representativeness of the sample-the chil-dren who attended the groups may be different fromthose who do not wish to attend such programs orwho have families who do not want them to attend.Thus, we cannot say whether the SMILES program issuitable for all children with a parent with a mentalillness. Also, the low response rate to the parent'sfeedback fonn means caution should be applied tothese findings. We have no way of knowing whetherthose who did not respond felt as positively about theprogram as those who did respond.
Discussion
erant and open-minded and less judgemental.
~~ugh ~idelines leamt, [my daughter] has theablh~ to h~ten, observe and recognise symptomsassociated with mental illness. By recognising symp-t~ms she has helped others"; "The program has alsoglve.n to this family, a sense of belonging withoutpre-Judgement"; "This is the first time we've beenable to discuss mental illness as a family"; "[Mydaughter learnt] how to deal with her emotions/feel-ings more effectively"; "Great benefits. He is awarenow of what mental illness is, what side effects themedications have and knowing that mental illness islike any other illness and not terminal-I think hefeels quite relieved"; "We started understanding eachother in many different ways"; "More understandingof her sister's difficulties and how normal it is tobecome frustrated at her and our life"; "[My daugh-ter] seems to be calmer"; and "He also understoodthat he should express his feelings and thoughts moreopenly."
Additional comments from the parents included"Would like to share the experience with other chil-dren in the family"; "Both parents and childrenshould participate. Really should not be optional forparents. Would be good to have lunch with the chil-dren and more for the parents in the afternoon"(Canadian program); and "We missed a day of theprogram because we didn't know about it. Thiswould have been good for them to attend."
This study has several limitations that need to berecognized in an interpretation of the data. Theknowledge and life skills measures were constructedfor this program, and the psychometric properties ofthe instruments are not known. However, the positivecomments by the children correspond to the improve-ment in their ratings and indicate that the measureshave, therefore, a reasonable degree of validity. An-other limitation is the lack of a control group-thus,the changes observed could be due to factors otherthan the participation in the program or could be dueto nonspecific factors inherent in attending any pro-gram or service. There is also the consideration ofdemand characteristics intrinsic to any evaluation ofa service provision-the children may have felt theneed to report improvement on the items at the endof 3 days, regardless of how they actually felt. If sucha demand characteristic is operating, it is obviouslymade easier because the participants are allowed tosee their ratings to each question from the start of theprogram. However, as stated, without knowing thereliabilities of the instruments and given the short-ness of the pre-post interval (3 days), we consideredit better to adopt this procedure than presume blind
Given the caveats stated above, however, we be-lieve that the positive comments by the children,together with supporting comments from their par-ents, are strong indicators of the benefits of the pro-gram. These comments also confirm that the positivechanges on the knowledge and life skills measuresare likely to be due to the content of the program andnot to changes occurring naturally over 3 days, nor todemand characteristics.
Of interest are the longer term benefits of such aprogram. Given that for many children their parentswill continue to experience the mental illness, futureinvestigations should examine the resilience-buildingeffects of children attending such a program as this.A longitudinal study that investigates whether atten-dance at such programs helps the children in thelong-term would need to be funded if we are to trulytease out the best possible service that we, as healthprofessionals, can give these children and their par-ents. Luntz (1995), in her review of various programsin America, described some that are of a long dura-tion (e.g., some Michigan programs run for 2 years)and others of much shorter duration (e.g., programsin Ohio run for between 8 and 20 weeks). The com-parative effectiveness of programs of differinglengths needs to be investigated-it may be that eachtype of program provides different kinds of benefitsto the children and parents. It is clear that a lot moreempirical work needs to be done, and reported, if weare to make informed decisions about what servicesto provide these families.
We hope that this information is a platform forothers to evaluate their work in this field. We con-sider such evaluation attempts to be important forseveral reasons: (a) the preassessments provide clin-ically useful information that can improve the work
388 PITMAN AND MA lTHEY
done during the program (e,g., focus on areas onwhich participants report low knowledge rather thanstick to a prescribed format that may not be suitablefor all groups), (b) understanding of the quantitativeand qualitative evaluation components allows adjust-ments to be made to the program for future partici-pants, (c) it provides potential future participants withinformation about the history of the effectiveness ofthe program, which should help them in decidingwhich service is most likely to provide them withbenefit. This latter point is rarely made in mentalhealth services, but we feel it is important if membersof the community are to make an informed choice asto whether to avail themselves of services presumedto be helpful. And, finally, the importance of the datareported for this SMILES program should be seen inthe context of the paucity of published empiricalevidence from other programs. Although the AICAF-MHA (200 I) scoping report states that 30 of 44programs in Australia included some form of evalu-ation, there is no information as to what such evalu-ations showed for the different programs. This mes-sage about the need for empirical evidence for thebenefits of local programs is also clearly given in thereview of American programs by Hinden et aI,(2002), whereas the overview of American, Cana-dian, and Australian programs given by the BCSS(2003) shows how difficult it can be for clinicians toaccess empirical data to help them decide on thecomparative effectiveness of programs currently be-ing run. Given that few such programs have beenpublished for public access, it is therefore difficult forworkers to use an evidence-based approach whentrying to meet the needs of these children unless thisinformation is described.
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Received July 30, 2002Revision received April 18, 2003
