Barnett Supportin Child w Special Needs

LWW/IYC AS188-07 May 30, 2003 11:16 Char Count= 0

Infants and Young ChildrenVol. 16, No. 3, pp. 184–200c© 2003 Lippincott Williams & Wilkins, Inc.

Building New DreamsSupporting Parents’ Adaptation toTheir Child With Special Needs

Douglas Barnett, PhD; Melissa Clements, PhD;Melissa Kaplan-Estrin, PhD; Janice Fialka, MSW, ACSW

Raising a child with a congenital anomaly or other chronic medical problem challenges families.Although most families are resilient, depending on families’ relative balance of strengths and vul-nerabilities, chronic child health conditions can contribute to problems with parenting and fam-ily relationships. We believe interventions can broadly promote family well-being by focusing onparental emotional, cognitive, and behavioral adaptation to their child’s condition. Parents’ adap-tation to their child’s diagnosis has been found to predict both family well-being and their child’sattachment security. After reviewing these and other relevant findings on families with childrenwith chronic medical conditions, the second half of this article describes a parent group inter-vention designed to promote adaptation among such families. The rationale, goals, and guidelinesof this 8-session intervention are provided. Considerations and unanswered questions about im-plementing the intervention are also discussed. Key words: attachment, group intervention,infants, parental adaptation, social support, special needs

FOR MOST parents, the birth of their childis a joyous time. However, nearly 4% of

parents receive distressing news about theirchild’s health. In fact, about every 3.5 min-utes a parent is told that their child has aserious chronic medical illness, health de-fect, disability, sensory impairment, or men-tal retardation (March of Dimes, 2000). Forthese parents, the time of their child’s birthmay become mixed with stress and despair.

From the Department of Psychology, Wayne StateUniversity, Detroit, Mich (Drs Barnett andKaplan-Estrin); and the Waisman Center, Universityof Wisconsin, Madison, Wis (Dr Clements). Ms Fialkais in private practice in South East Michigan.

Work on this article was supported by grants fromthe March of Dimes, and the National Institute ofMental Health. The authors also express appreciationto Hillary J. Heinze and Lisa Merlo for their helpfulcomments on prior drafts of the manuscript. We areespecially grateful to the families who have helpedteach us so much about parenting and providingservices to families.

Corresponding author: Douglas Barnett, PhD, Depart-ment of Psychology, Wayne State University, 71 WestWarren Ave, Detroit, MI 48202 (e-mail: [email protected]).

As reviewed in this article, social, emotional,and cognitive variables often pertaining toparents’ reactions to their child’s conditionhave consistently been identified as markersof parent and child well-being. We believethat they are more than markers. In our view,they represent social, emotional, cognitive,and behavioral processes that influence familyfunctioning. Consequently, we contend thatparents’ adaptation to their child’s conditioncan serve as a pivotal focus when interven-ing to improve parent and child function-ing. Following a review of research on parentand child functioning when the child has achronic medical condition, we present an out-line of an intervention designed to promoteparent and child well-being by focusing onparental adaptation to their child’s condition.We define adaptation as an ongoing processwhereby parents are able to sensitively readand respond to their child’s signals in a man-ner conducive to healthy development. Onthe basis of our review of the research, wecontend that parental perceptions, thoughts,and emotional reactions to their child’s con-dition are effective avenues for promotingadaptation.

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Building New Dreams 185

PARENT AND FAMILY ADAPTATION:STRESS, SUPPORT, AND RESILIENCE

Numerous studies have documented theunique emotional and physical demands thatstress and strain parents raising a childwith a chronic medical condition or dis-ability (Bruce, Schultz, Smyrnios, & Schultz,1994; Florian & Findler, 2001; Hauser-Cram,Warfield, Shonkoff, & Krauss, 2001; Shonkoff,Hauser-Cram, Krauss, & Upshur, 1992; Wade,Taylor, Drotar, Stancin, & Yeates, 1996;Warfield, Krauss, Hauser-Cram, Upshur, &Shonkoff, 1999). In addition to the normalstressors associated with having a new baby,these parents have to cope with many uncer-tainties about their child’s health and prog-nosis, frequent medical appointments andprocedures, and the additional workload ofcaring for a child with special needs. Whencoping strategies fall short, these challengescan detract from marital and other family rela-tionships as well as work and careers, therebycreating further tensions within families. Per-haps as many as one third of families arepushed beyond their psychosocial resources,and the stresses of having a child with a birthdefect affect parent mental health, family rela-tionships, and child adjustment at a clinicallysignificant level (Barakat & Linney, 1992). Forinstance, several studies have found increasedsymptoms of depression and incidence of ma-jor depressive disorder among parents of chil-dren with medical conditions (Blacher, Lopez,Shapiro, & Fusco, 1997; Breslau & Davis,1986; McKinney & Peterson, 1987; Speltz,Armsden, & Clarren, 1990). Families with chil-dren who have special needs also experiencemore marital conflict and are less likely tobe able to rely on prior social supports, asfriends and family members are often unsureof how to help and may avoid becoming in-volved altogether (Powers, 1993; Speltz et al.,1990).

Research has shown that higher levels ofstress, anxiety, and depression have a nega-tive impact on parenting (Crnic, Greenberg,Ragozin, Robinson, & Basham, 1983; Singeret al., 1993). In samples of children with and

without medical conditions, parental respon-siveness has been found to have a positive in-fluence on child development and well-being(Barakat & Linney, 1992; Collins, Maccoby,Steinberg, Hetherington, & Bornstein, 2000;Endriga, Speltz, Marris, & Jones, 1998; Smith& Pederson, 1988). But, parents of childrenwith special needs have been observed to beless responsive than are parents of childrenwithout special needs (Mahoney & Powell,1988). Parental responsiveness and sensitivityare necessary to promote secure attachmentamong children with special needs (Atkinsonet al., 1999; Clements & Barnett, 2002). Con-sequently, the stress of having a child withspecial needs can challenge family function-ing in a variety of interrelated processes thatappear to influence parental well-being, thespousal relationship, extraspousal supports,and parenting behavior.

Despite these strains, the research litera-ture indicates that having a child with spe-cial needs is not primarily a story of “gloomand doom” (Vacca & Feinberg, 2000). Thesame research that identifies increased stressand symptoms among such parents finds thatthe majority appears to cope well with theseadded demands, and remains relatively re-silient. Many parents raising children withchronic health conditions and developmen-tal disabilities report high satisfaction andenjoyment of their role. Knowledge of thefactors associated with resilience and healthyoutcomes has informed intervention pro-grams including our own so that positiveadaptation can be encouraged among a largernumber of families (Pelchat, Bisson, Ricard,Perreault, & Bouchard, 1999). In addition tofocusing on parental reactions and percep-tions of their child in our intervention, westrive to build and increase the number of fam-ily protective factors. For instance, because oftheir consistent association with positive out-comes in the research literature, we addressimproving parental access to and perceptionsof social support. We chose a group interven-tion over an individual intervention becauseof the high potential for the group to improvesocial aspects of parents’ adaptation.


186 INFANTS AND YOUNG CHILDREN/JULY–SEPTEMBER 2003

Support from spouses, friends, and familyhas been found to have a positive effect onhealthy adaptation among families (Barakat &Linney, 1992; Crnic et al., 1983; Florian &Findler, 2001; McKinney & Peterson, 1987).For instance, in a study of families of chil-dren with Smith-Mengenis syndrome, the sizeof the family’s support system was the bestpredictor of lower stress and fewer familydifficulties (Hodapp, Fidler, & Smith, 1998).In families adapting to a child with specialneeds, a good match between actual and desi-red spousal support was found to signifi-cantly predict positive personal, marital, andparental adaptation (Bristol, Gallagher, &Schopler, 1988). Bristol et al. (1988) foundthat support from one’s spouse was thebest predictor of parental quality in a sam-ple of children with and without disabilities.Parental coping and perceptions of controland stress also have been found to buffer orprotect parenting sensitivity and well-beingfrom the deleterious influences of stress. Forinstance, parental coping styles were found tomediate the relation between having a childwith congenital anomalies, perceived stress,and parental sensitivity (Atkinson et al., 1995).Parental perceptions of their ability to influ-ence positively child outcomes also have beenshown to predict healthy adjustment amongparents with a high-risk infant (Affleck,Tennen, & Gershman, 1985).

To summarize, having a child with a con-genital anomaly sets into motion a num-ber of chronic and acute stress conditionsthat detract from parent well-being, thequality of family relationships, and parent-ing behavior. Psychosocial resources suchas perceived control, the ability to utilizesocial support, and cope with stress ap-pear to be important in helping parentsprovide the types of parenting behaviorsthat will support healthy development intheir children. Consequently, we focus onbolstering parental perceptions of control,support, and coping to improve parentalemotional well-being and behavior. Addi-tional research to further understand effec-tive parental coping and to identify other pro-

tective processes within these families is alsowarranted.

PARENT AND FAMILY ADAPTATION:GRIEF AND RECOVERY

In addition to the stress associated with theextraphysical demands of raising a child witha chronic condition, parents experience psy-chological stress and disappointment whentheir child does not meet their hopes andexpectations for a healthy child. From thisperspective, many parents go through a pro-cess of grieving, although most appear to re-cover. We believe this recovery is the pro-cess of updating, rebuilding, and replacing thehopes and expectations they had prior to theirchild’s birth with the realities of their child’sactual prognosis. Influenced by theory and re-search on human attachment, loss, and care-giving (Bonanno & Kaltman, 1999; Bowlby,1988; Pianta, Marvin, & Morog, 1999), thisperspective emphasizes that when a child isborn with special needs, parents have to letgo of and grieve for their expectations and im-ages of their anticipated or “hoped for” child(Moses, 1988). Developing a representationor schema of their child’s actual, in contrastto their wished for, abilities facilitates parents’ability to respond sensitively to their child,thereby promoting a secure relationship withtheir child.

At various levels of awareness, all poten-tial parents have fantasies about their chil-dren and their child’s future. These hopesand dreams intensify during pregnancy. Par-ents imagine the kind of person their childwill become, the relationships they will havewith him or her, and the pride and joy theywill experience as a parent. We view theseseemingly narcissistic and self-indulgent day-dreams to be a normal part of the attach-ment process. They prepare parents to formattachments to the helpless and dependentnewborn who will soon arrive. They helpparents to make the long and difficult self-sacrifice and investment needed to raise chil-dren. However, high hopes and expectationsmay be a liability. They can be crushed when



a child is born with a medical condition ordisability.

For many of these parents, a complicatedprocess—similar to bereavement—begins(Emde & Brown, 1978). Some commonparental experiences at the outset of thisprocess are listed in Table 1. We believe thatmany parents and professionals are slow orfail to recognize this process of grieving andadaptation. One of the complications hasbeen identifying for whom the parents aregrieving. Physically, their baby is not lost;he or she is right there with them. Instead,these parents are grieving for their hoped forchild—the child they were expecting whonever arrived (Moses, 1988). Parents have toadjust their expectations and hopes for theirchild in the face of the substantial uncertain-ties inherent in their child’s medical, motor,intellectual, and social prognosis. Emotionallyand cognitively, parents must come to termswith their child’s condition.

Pianta, Marvin, and colleagues (Marvin &Pianta, 1996; Pianta et al., 1999; Pianta,Marvin, Britner, & Borowitz, 1996) have exam-ined parental reactions and developed a tech-nique for assessing parents’ state of mind re-garding their child’s diagnosis. On the basisof their responses to a brief, semistructuredinterview, parents are rated on the degree towhich they have resolved their thoughts andfeelings about their child’s condition. In Pi-anta and Marvin’s scheme, parental resolutionis marked by an integration of the facts and re-alities associated with their child’s conditionalong with emotional reactions to the diagno-sis. This integration is present in both theirmental images of their child and their relation-ship with him or her. Indices of resolved andunresolved reactions are presented in Table 2.

Like grief and mourning (Bowlby, 1980),parental reactions to diagnosis are thoughtto be determined by a complex set of pro-cesses related to personality, relationship his-tory, and how one has learned to process in-formation about emotions and relationships.Mothers’ resolution of their child’s diagnosishas been found to be significantly associatedwith a variety of measures of parent and family

functioning including maternal mental health,perceived social support, and husbands’ rat-ings of the marital relationship (Sheeran,Marvin, & Pianta, 1997). Notably, lack of ma-ternal resolution of child diagnosis has beenshown to be strongly associated with the for-mation of an insecure attachment in the di-agnosed child (Barnett et al., 1999; Marvin &Pianta, 1996; Pianta et al., 1999). From thisresearch, we have hypothesized that parentswho are unresolved regarding their child’s di-agnosis have difficulty responding sensitivelyto their child. We believe that until parentshave achieved a balanced view of their child,they will have difficulty accurately readingtheir child’s signals and providing their childwith a secure base from which to explore newrelationships, learn to trust others, developsocial skills, and feel lovable and efficacious.

THE ADAPTATION PROCESS

Although researchers and clinicians use theterms resolution and acceptance, we havechosen to emphasize the term adaptationwhen we work directly with parents. Our rea-son is that the words resolution and accep-tance both suggest an end point, whereasadaptation assumes an ongoing process. Oth-ers in the field have argued that there is nofinal stage of absolute parental acceptance(Blacher, 1984; Featherstone, 1980; Powers,1993). Rather, some grief and contradictoryemotions are likely to persist or reappear. Al-though the connotation of the term resolutionmay be misleading, those using these termsagree that there is no end point to this pro-cess. Pianta and Marvin’s classification systemassumes that there are elements of lack of res-olution present in all interviews. To the extentthat the balance is tipped toward resolution,the interview is classified as Resolved. Whilewe view the concepts of resolution and adap-tation as compatible, we use the term adapta-tion for group sessions with parents.

The processes by which parents adapt toor come to terms with their reactions totheir child’s diagnosis are not yet understood.There is some controversy about the validity



Table 1. Common parental reactions to news of child disability

• Feeling devastated, overwhelmed, and traumatized by the news• Shock, denial, numbness, and disbelief• Feelings of crisis and confusion when attempting to cope with news of their child’s diagnosis• Sense of loss for the “hoped for child”• Experience grief reactions similar to those experienced by individuals who lose someone through

death• Expectations and hopes for the future are challenged or destroyed• Feelings of guilt, responsibility, and shame• Strong anger directed toward the medical staff and professionals involved with child• Wondering whether things would be better off if the child dies• Decreased self-esteem and efficacy as parents’ senses of themselves as providers and protectors

are severely challenged• Marital and other family relationships become severely strained• Family routines are disrupted

of a grief model for parents of children withspecial needs (Vacca & Fienberg, 2000). Someof this controversy may be the result of amisunderstanding regarding the meaning ofphrases such as grief, resolution, and adap-tation. We do not view grief as an obvious,overt phenomenon that is pathological andsynonymous with distress and negative af-fect. Theoretically, we view grief adaptationto be a normal cognitive and emotional pro-cess. Cognitively, parents must come to under-stand the meanings and implications of the di-agnosis for themselves and their child. Theymust accurately process information abouttheir child and their child’s condition. Emo-tionally, parents must experience, accept, andexpress feelings of disappointment, sadness,grief, anger, and guilt that understandably mayaccompany the news that their child has aserious disability. Additionally, distressed par-ents must move past intense negative feelingsto experience the pleasures, rewards, joys,and connection with their actual child. Thisdoes not mean that they will not feel distressabout their child’s condition, but that thosefeelings will not be as strong or preoccupy-ing as they were initially. Many if not mostparents who have a child with special needswill and do achieve resolution on their ownand perhaps relatively quickly. We do not seeit as a universal issue for all families. Signs

that parents are having problems adapting totheir child with special needs assume a varietyof forms. One pattern includes parents whoremain preoccupied with negative reactionsassociated with their child’s diagnosis. Theseparents’ intense, raw affect suggests that theyreceived the news recently, when in realityyears have passed. A second pattern charac-terizes parents who deny any negative feelingsor disappointment regarding their child’sdiag-nosis. These parents appear to idealize theirchild and their role as caregiver. They may beidentifiable by their extremely positive scoreson measures of stress and stress-related symp-toms (Barnett et al., 1999). Other parents maycombine these patterns or fluctuate betweenthem.

In our research with parents who have chil-dren with mild-to-moderate impairment, wefound approximately half of parents were clas-sified as unresolved in their reactions to theirdiagnosis 2 or more years after learning oftheir child’s diagnosis (Barnett et al., 1999).Time since learning of child’s diagnosis hasnot been found to predict parents’ resolutionstatus regarding their reactions to their child’sdiagnosis (Barnett et al., 1999; Pianta et al.,1996). Even when we reinterviewed parentsmore than a year and a half after their ini-tial interviews, nearly half remained or hadbecome unresolved (Clements et al., 2001).



Table 2. Signs of resolution and lack of resolution from Pianta and Marvin’s reaction (Pianta &Marvin, 1992) to Diagnosis Classification System

Evidence of resolution Signs of lack of resolution

• Acknowledgment of emotional difficulty oflearning of the diagnosis

• Recognition of change in reactions sincelearning of the diagnosis

• Suspension of search for an existential reasonfor child’s condition

• Acknowledgment of the need to move on intheir life

• Accurate representation of child’s abilities

• Denial of emotional impact of diagnosis• Cognitive distortions related to child’s

diagnosis or abilities• Confusion and mental disorganization

(contradicting oneself; loss of memory)• Active search for existential reason for child’s

condition• Disoriented or stuck in the past• Boundary violations (attempts to draw

interviewer into collusion against medicalpersonnel

Consequently, time in and of itself doesnot appear to be sufficient for parents toresolve their reactions or adapt to theirchild. Through longitudinal research on par-ents who participate in our intervention, wehope to show that processing their reac-tions with other parents in a therapeutic set-ting can improve parents’ adaptation to theirchild. These findings would provide com-pelling evidence that interventions are use-ful in promoting parent and child adjustment

Table 3. Challenges to adapting to child diagnoses

Distress• Parents are likely to re-experience grief at each new developmental stage and milestone that

their child fails to achieve• Preoccupation with guilt, anger, and unanswerable questions about blameUncertainty• Implications of the diagnosis are unknown• During early months child may not appear different from others and can briefly or permanently

appear developmentally advanced in some areasAvoidance• Parental denial and suppression of negative feelings about their child• Family and friends may be reluctant to acknowledge the disappointment and sadness of the

news, and be overly optimistic or focus only on the positiveIsolation• Members of the medical community may appear insensitive, emotionally distant, and not reach

out and connect with parents• Family and friends may withdraw from parents or parents may push them away

within families raising a child with specialneeds.

To date, we have yet to identify parent fac-tors that predict whether they successfullyadapt to their child. We did find that type ofchild’s impairment predicted lack of resolu-tion. Specifically, we found parents were morelikely to be classified as resolved if their childhad a correctable condition such as cleft lip,where surgery could repair the majority of thedisfigurement. Parents were more likely to be



classified as unresolved if their child had a di-agnosis that did not have a medical remedysuch as limb deficiencies and cerebral palsy(Barnett et al., 1999). However, child condi-tion made only a tiny contribution to parentaladaptation. Several processes that we hypoth-esize may interfere with parents achieving res-olution are listed in Table 3. We believe the un-folding nature of parents’ knowledge of theirchild’s prognosis to be one of the biggest chal-lenges to parental adaptation. Specifically, aparent may understand that the child has se-rious motor impairments and will not walk.However, it may be years before they actuallyexperience the emotions. For example, theymay not fully realize their grief until they seetheir child not walking when his or her peersare, or their child not running and playing tag,when other children are. At each new devel-opmental phase, the parent is likely to experi-ence new emotions related to the child’s con-dition. This developmental unfolding appearsto be particularly stressful for parents. Theymay begin to master their thoughts and feel-ings, only to have them reawakened over andover. For these reasons, one of the goals of ourintervention is to help parents understand theongoing challenges of raising a child with spe-cial needs and to develop the confidence andtools needed to adapt not only in the present,but to anticipate future change and to adaptaccordingly.

A GROUP INTERVENTION PROGRAMFOR PARENTS OF TODDLERS ANDPRESCHOOLERS WITH SPECIAL NEEDS

Because many families report finding it sig-nificantly challenging to raise a child with spe-cial needs, and because these children areat risk for adjustment problems, we have de-veloped an empirically informed interventionthat can improve parent and child well-being.Our group intervention is geared toward par-ents who have a toddler or a preschoolerwith special needs. The group was designedfor parents of children with Down syndrome,cerebral palsy, epilepsy, spina bifida, hydro-cephalus, mental retardation, and related dis-

orders. It can be adapted to address other con-ditions. The primary focus is the parent orfamily psychosocial adaptation to their childrather than working directly with their childper se.

Currently, we are offering groups to par-ents who have known of their child’s diagno-sis for at least 6 months. We believe that par-ents should be past the period of initial shockor what Miller (1994) refers to as “surviving”and to have had a chance to learn first handabout their child’s condition and some of itsimplications. Both the literature and parentsin our groups suggested that several monthsare needed to process the medical informa-tion on their own or with trusted loved ones,before they are ready to discuss these mat-ters in a group setting with mental health pro-fessionals and other parents. We decided notto offer the group to parents of newborns,in part so that they had more time to pro-cess the diagnostic information, and becausemany of the developmental manifestations oftheir baby’s special needs may not be evidentuntil they are older. In contrast, toddlers andpreschoolers share a number of developmen-tal issues pertaining to early autonomy andthe initial developmental milestones of loco-motion and communication (Erickson & Kurz-Riemer, 1999).

At the same time, there may be some par-ents who are more open to change during theinitial period of shock and distress. Perhapsthe opportunity to engage parents becomestime-limited as some quickly reject their child,placing him or her in the care of a relativeor foster parent. An intervention by Pelchatet al. (1999) provided individual counsel-ing by nurses, starting in the hospital andcontinuing at home soon after the child’sbirth. Pelchat and colleagues’ interventionwas based in systems theory. It also had abroad focus that included an effort “To helpthe parent gain a realistic understanding ofthe situation and to help them grieve theirdream of a perfect child” (p. 468). Those par-ents who completed the intervention demon-strated significant improvements in their ad-justment and social support compared with



comparison parents, even when parents werereassessed a year after the intervention. Con-sequently, identifying when optimally to of-fer interventions is an open and importantquestion.

Our intervention is grounded both inthe stress, support, and coping as well asin the grief and adaptation research reviewedin the initial sections of this article. Wealso conducted focus groups with parents togather their input and reactions to our re-search and ideas for intervention prior to everconducting an intervention group. The resultwas an 8-session program that is conductedwith small groups consisting of approximately2 to 4 families. Both mothers and fathersare strongly encouraged to attend. We recom-mend keeping the number of group partici-pants in any given session to no more than4 or 5 parents. Parents often have a lot toshare with the group, and when more than5 attend all parents do not have much of anopportunity to participate. Meetings are heldweekly and last for 90 minutes. Opportuni-ties to attend a missed session are provided.The groups are jointly led. Preferably at least 1therapist is a master’s level mental health pro-fessional, and at least 1 of the group leaders isa parent who has an older child with specialneeds. We recommend recruiting and trainingsuch a parent to serve as a group leader. Grad-uates of the group may be appropriate futuregroup cofacilitators.

We have settled upon an 8-session program.Prior programs have been effective when theywere relatively short in duration, such as 5 to8 sessions for 1 to 2 hours at a time (Moxley-Haegert & Serbin, 1983; Nixon, 1993; Pelchatet al., 1999; Sandler, Coren, & Thurman, 1983;Singer et al., 1993; Singer, Irwin, & Howkins,1988). In our focus groups, parents empha-sized the importance of brevity. We do notbelieve 8 weeks is sufficient to make and seebig changes in family functioning. Eight ses-sions do not provide adequate time to explorein depth any of the larger issues addressed inthe group. However, 8 sessions do appear tobe enough time to initiate a process withinthe parent that will help him or her move for-

ward toward healthier adaptation. We hoperesearch will answer the question of whetherbooster sessions are needed to help maintainwell-being over the course of each family’s de-velopment (Hauser-Cram et al., 2001).

Overarching goals of our parentgroup intervention

I. Facilitate parental adaptation by identi-fying and validating the range of feel-ings, identifying parental strengths, andincreasing parents’ supports and cop-ing as they work to build new dreamsfor their child.

II. Encourage mutual support and sharingof information among group members.

III. Increase perceptions of support avail-able and received as well as quality ofimportant relationships, including thespousal relationship.

IV. Improve skills at seeking information,support, and resources regarding childmedical diagnoses and services for chil-dren and families.

V. Promote parenting sensitivity and effec-tive parenting skills.

Session 1: Getting to know each other

The goal of the first session is to createa comfortable, friendly, and trusting atmo-sphere in which participants can begin to lis-ten and share. Group facilitators introducethemselves, the purpose of the group, and de-scribe their relevant background and experi-ence. Parents are then invited to introducethemselves and encouraged to share some-thing about themselves, their families, andtheir child with special needs. During this ses-sion, parents are asked to think about previ-ous group experiences, and to discuss the el-ements that make valuable contributions toparent groups. We expect a third or more haveparticipated in some type of support groupfor parents. Typically, parents’ prior groupexperiences were loosely structured, single-session meetings. Learning from these priorgroup experiences facilitates parents connect-ing with and benefiting from the proposed



8-session intervention. Participants developguidelines for group participation and are en-couraged to express expectations of whatthey hope to gain from the group sessions.Parents are informed that they may opt to passon group activities that they are not comfort-able with or prepared to deal with, but theyare encouraged to revisit these activities whenthey are ready.

The basic goals of the program are intro-duced and discussed. Group facilitators clar-ify what the group can and cannot reasonablyoffer to the participants. Appropriate refer-rals and references will be provided in in-stances where requested services and infor-mation are beyond the capacity of the group.Sections of Nancy Miller’s book Nobody’s Per-fect (Miller, 1994) are read aloud, illustratingthe range of reactions and feelings that par-ents experience surrounding their child’s di-agnosis. Miller (1994) also uses the term adap-tation to describe the process that a parentexperiences after receiving a diagnosis of thechild’s condition. Her work has had a signif-icant influence on our thinking. As a heuris-tic, Miller views the process of parental adap-tation as a progression from “surviving” to“searching”to “settling in”to “separating.”Shedoes not view these as discrete stages, butrather as overlapping and spiraling compo-nents with parents returning to earlier phasesas new parenting and emotional challengesare encountered.

One of the challenges of group work isthat parents’ experience and reactions arequite varied so that each parent will be in adifferent psychological place with regard tothe child. Miller’s idea of 4 phases of adapta-tion helps parents to develop a mental mapof the adaptation process, specifically, wherethey are in this process, and most important,that they can attain more adaptive responsesto parenting and relating to their child. InMiller’s framework (Miller, 1994), the surviv-ing stage involves parental coping with thelife-changing nature of the experiences andfeelings associated with the diagnosis of achild with a disability. Suggestions for par-ents in this stage include normalizing varied

parental feelings, expressing those feelings,using support networks, and finding timefor oneself. The searching stage involves thesearch for reasons, for information about thediagnosis, for understanding about how thiswill affect one’s life, and for treatment and/orservices. While searching can lead to empow-erment, it can also be frustrating. Searching isnecessary for parental adaptation; however, itnever ends. During the settling in stage, theparents achieve a sense of balance and pre-dictability in their thoughts and feelings abouttheir child. This stage has several elements re-lated to Marvin and Pianta’s concept of diag-nosis resolution (Marvin & Pianta, 1996) suchas shifting priorities, arriving at more realis-tic expectations, focusing on the present, andmoving on with life. The last stage describedby Miller—separation—becomes a larger is-sue as the child becomes more independentand spends increasing time away from home.In this stage, parents are faced with letting goof some of their helping and protecting behav-iors, and trusting their child’s abilities to carefor themselves. Miller’s work (Miller, 1994) ishelpful to parents because it acknowledgesthe flexibility and continuity within the adap-tation process.

Session 2: Getting to know our questions

The goals of this session are to help par-ents clarify questions they have about theirchildren and their relationship with them andto understand their own approach to workingwith professionals and acquiring information,resources, and services. Parents are asked todiscuss how they learned of their child’s di-agnosis, what they learned about it, what in-formation is missing, what concepts are un-clear, and what problem-solving strategies areneeded to gain resources/information. Par-ents learn about identifying and posing keyquestions to health, medical, and school ser-vice providers. Sections are read aloud ofDo You Hear What I Hear? Parents andProfessionals Working Together for ChildrenWith Special Needs by Janice Fialka and KarenMikus (Fialka & Mikus, 1999). The bookincludes discussions of the differences in



perspective between parents and profession-als in schools and clinics. Effective strate-gies for working with professionals to obtainand organize information are detailed and ex-plored. Parents are asked to keep a journalof words and/or pictures chronicling their ex-periences rearing a child with a disability ormedical condition. Including journal entriesof emotional reactions and questions is em-phasized. Although journal entries will nottypically be shared with the group (unlessparents wish to do so), parents are informedthat keeping a journal can be a helpful andsafe way of expressing their thoughts and feel-ings surrounding having a child with a disabil-ity. As an alternative to writing in a journal,parents may choose to speak out loud to aphoto of their child, saying things they feelbut do not say to their child. Research on ex-pressing emotions verbally support that theseprocesses promote well-being (Pennebaker,1990; Smyth, 1998).

Session 3: Getting to know our dreams

The goal of this session is to elicit, validate,and support parents’ past and current dreamsfor their children. To facilitate this goal, thegroup views portions of the videotape Lostdreams and growth: Parents’ concerns byKen Moses (Moses, 1988). Moses is a mentalhealth professional who has a son with spe-cial needs. In the video, he discusses his ex-perience as a parent of a child with specialsneeds, and parents of children who have spe-cial needs respond to Moses’ experiences andquestions. Group facilitators invite the par-ents to respond to particular stories, feelings,dreams, and questions from the tape that ei-ther match or differ from their own experi-ences. As a homework assignment, parentsare asked to write a letter to, or draw a pictureof their hoped for child. Although their lettersand pictures are not shared with their child,they are asked to reflect on the hopes anddreams they had for their child before learn-ing of their child’s medical diagnosis.

Sessions 4 and 5: Giving ourselves time

The goals of these sessions are to helpparents accept their reactions to their child,

develop realistic expectations of themselves,and identify the challenges that lie ahead. Un-derstandably, many parents try to deny oravoid their negative reactions to their childand their child’s condition. They may feelpressure to “get over” it. They may feel a lackof empathy from others. We believe effortsto avoid, minimize, or hurry negative feelingsinterferes with the adaptation process. Con-sequently, we work to normalize parents’ re-actions and distress, encouraging them to ex-plore rather than avoid these feelings. Thefacilitator reviews the stages included in thebook Nobody’s Perfect: surviving, searching,settling in, and separating. As previously men-tioned, the “stages” in the process of adapt-ing to a disability diagnosis are not necessar-ily sequential, often overlap, repeat, and donot imply closure or completion. We help par-ents to realize that adaptation is a lifelongprocess and to identify important emotionalmilestones that accompany their struggle tobuild new dreams for their child. Catalysts formovement from one stage to another as wellas stage overlap and repetition are discussed.The book is also used to help parents identifytheir strengths and abilities and to learn addi-tional ways to handle difficult times. Parentsare invited to share the ways that they haveworked through or handled the challenges ofeach stage. Chapter 7 of Miller’s book, entitled“Taking care of you,”is used to emphasize theimportance of parents attending to their ownneeds.

Session 6: Slowly rebuilding new dreams

The goal of this session is to encourageparents to take new steps in adapting totheir child. In this session, parents reflecton their journey up to this point, and theyidentify their strengths. They consider whattheir families have done well and the bene-fits of those experiences. Participants sharestories of hope and progress. In the con-text of reminders of the unfolding natureof their child’s development and personal-ity, parents begin to explore new dreams fortheir child and for themselves as parents. Par-ents are asked to participate in an art activ-ity in which the instructions are to create 2



pictures/symbols: the first depicting their sur-roundings and their mood immediately afterlearning of their child’s disability and the sec-ond depicting their current mood and sur-roundings. Parents are then asked to reflecton what has changed since they first learnedof their child’s disability.

Session 7: Relating to others

The goal of this session is to provide in-formation to boost coping strategies and im-prove the parents’ relationships with familyand friends. This session addresses concernsregarding the impact of the child’s specialneeds on the parent and on spousal, sibling,and extended family relationships. Stress, con-flict resolution, prioritizing, and other com-mon challenges to relationships within thefamily are considered. Different ways of re-sponding to and coping with stress are de-scribed. Particular attention is given to im-proving communication and reducing stressin the relationships between mothers and fa-thers. We encourage mothers and fathers toattend, but in many cases this is not possible.We encourage a group dialogue about step-parents and situations where parents are andare not living together. To clarify differencesin how mothers and fathers respond to hav-ing a child with a medical condition or disabil-ity, group members are asked to read excerptsfrom Donald Meyer’s book Uncommon Fa-thers: Reflections on Raising a Child With aDisability (Meyer, 1995). Group members of-fer examples and suggestions for meeting vari-ous challenges so that they can maintain satis-fying, mutually supportive relationships withfamily members.

Session 8: Relating to my child

The goal of this session is to encourageand reinforce sensitive parenting and to ac-knowledge the formal ending of the groupcurriculum. In this session, the significanceof parental behavior and emotional reactionsto the child’s developing sense of trust andsecurity are explored. Group leaders discusshow physical closeness and touch communi-cate comfort and security to children. Parentsare encouraged to learn their child’s unique

ways of communicating. The group discussesrecognition and acceptance of their children’stemperamental styles. Parental strategies forbehavior management that promote healthydevelopment and a trusting secure parent-child relationship are described and modeled.To help acknowledge the ending of the for-mal curriculum, parents are asked to developa list of ideas, feelings, beliefs, and experi-ences they want to remember from their par-ticipation in the group. In effect, we encour-age them to write a note to themselves thatthey can take out and read at some point inthe future when they might be stressed or dis-couraged about their role as parents. We alsoask participants to share their reactions aboutthe group such as what worked, why it washelpful, what more is needed, and what theyplan to do next. At the end, they also are giventhe opportunity to provide anonymous writ-ten feedback to the group leaders.

MECHANISMS OF CHANGE

The efficacy of our group intervention toimprove parent well-being, parenting sensitiv-ity, and child attachment security and socioe-motional adjustment has not yet been tested.We are beginning efforts to evaluate its util-ity empirically. We believe the interventionwill be proven effective because it targets andchanges parental adaptation to their child. Asdepicted in Fig 1, we see adaptation to thechild with special needs as pivotal to promot-ing parent and child well-being. From an at-tachment perspective, grieving is a processwhereby people update and adapt their psy-chological attachment to the lost individual.When the child’s well-being is threatened,strong emotions of attachment, love, and pro-tection, as well as anger and sadness, arereleased. Parents have to update their percep-tion of their child and open themselves to in-tegrating their thoughts and emotions. As theyadapt their images of their children—givingup aspects of the hoped for child that can-not be realized—they experience the intensenegative emotions of loss that can interferewith their ability to care for their youngster.We believe that failures in acknowledging and



Fig 1. Conceptual model of intervention mechanisms of change.

letting go of the hoped for child contributesto insensitive caregiving, because it interfereswith parent’s ability to accurately read and re-spond to the child’s actual needs and signals.

We believe social, emotional, cognitive, andbehavioral processes promote positive adap-tation. Consequently, our intervention is de-signed to target factors in each of thesedomains. Figure 1 also depicts the multi-faceted approach of the intervention. Socialfactors addressed include improving socialsupport and the spousal relationship. On thebasis of the established importance of so-cial support for families whose child has adisability or medical condition, many typesof parent support groups have been devel-oped (Davison, Pennebaker, & Dickerson,2000; Harbin, McWilliam, & Gallagher, 2000;Slentz, Walker, & Bricker, 1989; Santelli,Turnbull, Lerner, & Marquis, 1993). In gen-eral, such groups have been successful in in-creasing parental self-appraisal and compe-tency. Boukydis (1994) found that parentsof children with disabilities feel that otherparents with similar circumstances would bebest able to provide them emotional support.Marital counseling also has been found tohave beneficial effects for parents whose childhas a medical condition (Hawkins, Singer, &Nixon, 1993). We encourage both parents to

attend our group sessions, and provide sup-port to this relationship in the form of copingand communication strategies.

Emotional factors also are important inpromoting parental adaptation. The pro-posed intervention emphasizes expressingnegative emotions and finding adaptive waysof coping with these feelings. Among healthprofessionals, there is increasing recognitionof the role emotional expression plays inmaintaining physical and mental health(Kelley, Lumley, & Leisen, 1997). Using a griefframework, several have made suggestions forinterventions to target emotional expression(Ellis, 1989; Klass, 1988; Powers, 1993). SocialSupport also has been found to be a signifi-cant factor in grief resolution as sharing one’sfeelings has been found to increase the like-lihood of resolving the bereavement (Rando,1985; Schut, Stroebe, van den Bout, &Terheggen, 2001). Lehman, Ellard, andWortman (1986) found that the most helpfulemotional supports for those who haveexperienced a loss include contact withthose who have experienced similar lossesand the opportunity to vent feelings. Culberg(1971) found that women who suppressedtheir feelings about having a stillbirth hadprolonged psychological problems relative towomen who expressed their feelings. In our



intervention, group leaders emphasize thatgrief is a normal reaction to having a childwith a disability or illness. Further, parentsare told that grieving the loss of the imaginedchild does not mean they do not love theiractual child (Ellis, 1989). These parents maywish the disability did not exist, but they stillexperience joy as a parent and pride in theirchild. Also, parents are informed that somefeelings of grief may always persist. They areprepared for feelings of grief that emerge asa result of environmental triggers such ascontact with another child who is the sameage as their own but who is more advanceddevelopmentally (Bruce et al., 1994; Klass,1988; Powers, 1993).

We emphasize the parent-child attachmentrelationship because it is influenced by andpromotes or mirrors parent and child socialand emotional well-being (see Fig 1). Childrenwith secure attachments have more sensitiveand healthy parents and demonstrate bettersocial and emotional adjustment within andbeyond their attachment relationship than dotheir insecure counterparts (Anan & Barnett,1999; De Wolff & van IJzendoorn, 1997;Schneider, Atkinson, & Tardif, 2001). Severalparent interventions have been developedand shown to be effective at increasing childattachment security (van IJzendoorn, Juffer,& Duyvesteyn, 1995). There is also evidencethat these parent interventions are effective inpromoting child adjustment by increasing at-tachment security (van den Boom, 1995).

Cognitive and behavioral factors also playessential roles in parental adaptation, andtherefore are addressed in our parent groups.We stress knowledge about child develop-ment, sensitive parenting, and enhanced cop-ing strategies. We also emphasize attendingto and shaping parental attributions abouttheir child and his or her condition. Otherstrategies include providing clear informa-tion about disabilities, legal and financial mat-ters (eg, insurance, funding sources), as wellas local and national parent organizations(Connolly & Sheridan, 1996). In addition, werecommend giving parents clear informationabout the importance of sensitivity to chil-

dren’s signals and providing videotaped mod-eling of sensitive parenting. Interventions toenhance parenting skills and the competencyof parents of children with disabilities haveled to improvements in child and parent func-tioning as well as in parent-child interactions(Mahoney & Powell, 1988; Moxley-Haegert& Serbin, 1983; Pelchat et al., 1999; Sandleret al., 1983; Slater, 1986). For example, an in-tervention program called Support and Edu-cation for Families (SAEF) was developed toaddress the concern of elevated parental de-pression among parents whose child has amedical condition (Singer et al., 1988, 1993).SAEF offered the parent several types of inter-ventions, some of which included parent-to-parent support groups, instruction in copingskills, and behavioral parent training. Overall,the SAEF program led to reductions in depres-sion. The behavioral training class, in partic-ular, led to increases in positive parent-childinteractions and fewer undesirable child be-haviors (Singer et al., 1988, 1993).

At this point in time, we do not believeany of the aforementioned domains (ie, so-cial, emotional, cognitive, and behavioral) ad-dressed in our intervention is of greater im-portance. Each of these ingredients makesa unique and important contribution towardhealthy adaptation. We believe focusing onany one of these processes in exclusion ofthe others would be a mistake and woulddecrease the effectiveness of our interven-tion. Interventions that have focused solelyin one domain, such as emotion disclosure,are not likely to be as effective as thosethat address the social integration of emotionand cognition (Schut et al., 2001). Moreover,we do not see processes in these domainsto be mutually exclusive. Rather, we see so-cial, emotional, cognitive, and behavioral pro-cesses operating synergistically to promoteparental adaptation. For instance, in groups,members can help to validate the feelings andemotions of other members, establishing theuniversality of grief (Humphrey & Zimpfer,1996; Summers, Behr, & Turnbull, 1989).Group members can also pool and share in-formation with one another. By sharing their



experiences, parents can become more awareof their thoughts and feelings and realizethat not all their thoughts are realistic or ac-curate (eg, that a parent is responsible forhis or her child’s disability) (Klass, 1988).Group members make comparisons, recog-nize, and benefit from other members’ knowl-edge and coping strategies. Accordingly, theylearn strategies for managing and express-ing their grief. As noted by Humphrey andZimpfer (1996), “A group has the potentialto become a therapeutic community, offeringopportunities for support, self-exploration, in-sight, behavior change, and the developmentof new socializing techniques.” (p. 90). Notonly do social, emotional, cognitive, and be-havioral processes amplify one another posi-tively, it is impossible to separate them in anintervention. Therefore, we try to emphasizeall of these processes, rather than emphasizeany one in particular.

PARENT READINESS TO CHANGE

At the outset, parents must see the groupsas supportive and helpful if they are goingto be open to participating. We believe thatthere are individual differences in what com-ponents of the intervention will appeal toeach parent. For some parents, social supportis a key entry point toward adaptation, whilefor others expressing distress is crucial. Formost parents, more than one of these pro-cesses will work to move them toward seek-ing help and improving their adaptation. Byemphasizing several processes, we believe wecan appeal to a larger pool of families, keepparticipants engaged, and ultimately promotelasting improvements. For some parents thisbrief intervention may be sufficient. For oth-

ers, it may create the desire and potential tobenefit from future intervention.

There are both pluses and minuses tothe group approach. The group context hasthe advantage of providing services to mul-tiple families simultaneously. Groups com-bine the wisdom of their members. However,some parents may not wish or feel ready toshare with others. Prior research on a supportgroup for mothers of high-risk infants foundpositive effects only for mothers who hadhigh need for support at the outset (Affleck,Tennen, Rowe, Roscher, & Walker, 1989). Itis possible that some parents may even havea negative effect on other group members bymodeling maladaptive and dysfunctional reac-tions and adaptations to their child. As a re-sult, it is important for group leaders to in-terview and get to know all potential groupmembers prior to the first session. We donot believe that all parents are equally readyto participate positively in the group. There-fore, group leaders must be alert and readyto help some parents find individualized in-terventions, or work with them until they areready for a group experience.

We believe achieving healthy adaptation iscentral to parents developing a satisfying at-tachment with their child. Ideally, parents in-creasingly are able to learn to love, appreciate,and attach to their child. As the child devel-ops a secure attachment, the parent and childare able to build new, more realistic dreamstogether. We believe that parental adaptationis facilitated through social, emotional, cogni-tive, and behavioral processes. In our evalua-tion research we are examining whether par-ents’ reactions to their child’s diagnosis andchild attachment security mediate the relationbetween program participation and parent,family, and child well-being.

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Barnett Supportin Child w Special Needs