Risk and Protective Influences in the Livesof Siblings of Youths with Spina Bifida

Melissa H. Bellin, Pamela f. Kovacs, and Kathleen f. Sawin

The impact of childhood chronic health conditions like spina hifida (SB) is a shared familyexperience. However, the lived experience of sihlings is not well known. One hundred and

fifty-five brothers and sisters of a child with SB responded to an open-ended question includedin an anonymous self-administered mail questionnaire designed to enhance awareness of

how adolescent sihlings experience this chronic condition. Content analysis performed hyinterdisciplinary authors identified four domains—Rewards and Consequences of Spina Bifida,

Journey Toward Acceptance of Spina Bifida, Emotional Climate of Sihlings, and Qualities ofthe Social Environment—that depict emotional complexity in response to the diverse riskand protective influences present in the lives of sihlings. By bolstering the siblings' strengths

and resources found in their adaptive coping mechanisms, spirituality, cohesive family ties, andsupportive peer friendships, social workers and other health care professionals may help them

to successfully navigate the intense and confusing emotions that may naturally spring from thechallenges and opportunities associated with SB.

KEY WORDS: chronic health condition;family-centered care; risk and resilience; siblings; spina bifida

With advances in health care and reha-bilitative technology enabling youthswith spina bifida to live longer and in

the context of their families (Bowman, McLone,Grant,Toniita, & Ito, 2001), potential Stressors, suchas caregiving demands, financial concerns, and healthworries, are truly a shared family experience. Spinahifida (SB), a congenital spinal cord injury, resultsin a range of complications depending on the levelof damage to the spinal cord. Almost all childrenwith SB have neurosurgery in the first days of lifeto close the protrusion of spinal cord contents mostoften located at the thoracic level of the spine orlower (Hunt, 1999). In addition, the majority willhave surgery for hydrocephalus in the early daysof life. The ventriculoperitoneal shunt (from theventricles in the brain to the abdomen) insertedto treat hydrocephalus can function well for yearsand need few surgical revisions or may have to bechanged multiple times because of infection ormalfunction (Heinsbergen, Rotteveel, Roeleveld,&Grotenhuis, 2002).

Although the severity of medical problems var-ies, most youths with SB have altered mobility thatresults in their use of crutches, braces, or a wheelchair; altered innervations of body organs that result

in lack of control of bladder and bowel or a decreaseof gastrointestinal motility that can cause problemssuch as chronic constipation; changes in the muscu-loskeletal system, often requiring foot, tendon, sco-liosis, or tethered cord surgery; absent or decreasedsensation below their SB lesion; latex allergy; andneuropsychological deficits (Bowman et al., 2001;Mitchell et al., 2004). These youths typically havethe capacity to be independent in dressing, groom-ing, and other self-care activities, though they maybe slower to develop these skills, especially if theylive in homes that are not accessible. Furthermore,although most youths with SB will not be able tocontrol their bladder and bowels voluntarily, theyand their families can perform bladder and bowelprograms to achieve continence (Borzyskowski,Cox,Edwards, & Owen, 2004; Krogh, Lie, Bilenberg, &Laurberg, 2003).

The complex medical, social, emotional, and fi-nancial challenges associated with SB may heightenvulnerability to poor psychosocial functioning inboth the affected child (Appleton et al., 1997) andthe surrounding family members (Holmbeck etal., 1997). There is a paucity of research on siblingadjustment, though some data support an elevatedrisk of behavior diíFiculties (Tew & Laurence, 1973).

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The purpose of this study is to raise awareness aboutthe risk and protective influences present in the livesof siblings of youths with SB so that resources maybe mobilized to decrease vulnerability and bolsterresilience.

LITERATURE REVIEWTwo studies have generated an initial picture of thecomplex array of Stressors and growth opportunitiesspawned by the experience of living with a brotheror sister with SB. In the earliest work, Pinyerd (1983)interviewed 12 siblings, ranging in age from 6 to 12years, about their daily life experiences. Althoughtheir stories generally depicted acceptance of SBin their lives, the siblings acknowledged hardshipsfound in missed or disrupted social Ufe opportunities,worry about hospitalizations or injury to their broth-ers and sisters, and uneven parental attention. Kiburz(1994) similarly found an overall healthy picture ofsibling life in her interviews with 15 school-agesiblings, but their stories revealed jealousy arounddifferentia] attention, health concerns, and sadnessrelated to reduced opportunities to engage in physi-cal activities with their brothers and sisters.

These studies in SB provide a contrast to researchon sibling life across other populations that seem todepict a more pronounced, negative influence of thechronic health condition (CHC) in their lives. Forexample, siblings of youths with diabetes reported"constant feelings of sadness, worry, and emotionaldistress over their sibling's illness" (HoDidge, 2001,p.20).Themes of embarrassment,jealousy,guilt,andconflict about pursuing one's own needs have alsoconsistently surfaced (Bendor, 1990; Hollidge, 2001 ;Lehna, 1998). Awkward responses to the family inpublic settings (Cate & Loots, 2000), teasing andbullying of their siblings with CHC (Adams, Peveler,Stein,&Dunger, 1991),and restricted opportunitiesfor peer socialization (Bendor, 1990) have presentedadditional challenges for some.

Offering a balance to these psychosocial difficul-ties are growth opportunities linked to the experi-ence of having a sibling with a CHC. Specifically,siblings have identified increased empathy for peoplewith chronic conditions (Cate & Loots, 2000),greater patience and sensitivity (Tritt & Esses, 1988),enhanced maturity (Murray, 1998), and the develop-ment of leadership skills (Kiburz, 1994) as personalbenefits. Positive influences of the CHC on socialrelationships are also evident in the literature. Somesiblings have commented that the shared experience

strengthened family bonds (Adams et al., 1991). Inaddition, there is evidence that sibling interactionswhen one member has a CHC are more positivethan those relationships between pairs without aCHC (Cuskelly & Gunn, 2003). However, evenwhen siblings described a strong attachment to theirbrothers and sisters, they acknowledged that theCHC placed challenges on this relationship in termsof communication difficulties (Cate & Loots, 2000)and restricted play activities (Kiburz, 1994).

In summary, the influence of a CHC in the livesof siblings is not uniform. Instead, there is diversityin how siblings perceive its impact on themselvesand on their relationships. Although these accountsof sibling life offer an important initial glimpse intothe experiences of some, siblings of youths with SBare an understudied population, with the adolescentvoice particularly limited. Because the influence ofSB on the family and the attitudes and behaviorsof the siblings may all change over time, learningabout the adolescent sibling's perspective of the riskand protective influences in their lives is essential.Also, the face-to-face interview format used in theprevious SB research may have restricted siblingresponses in terms of sharing "feelings they deemednegative or socially inappropriate" (Kiburz, 1994, p.229). An anonymous data collection process mighttherefore yield a contrasting window into the innerworld of sibling life. The present study addressesthese apparent gaps in the literature by offeringknowledge about the influence of SB in the livesof adolescent siblings.

CONCEPTUAL FRAMEWORK:RISK AND RESILIENCEGrounded in ecological and developmental theo-ries, the risk and resilience perspective of humanbehavior acknowledges multilevel forces on thedevelopmental trajectories of youths (Fraser, Kirby,&Smokowski,2004;Greene,2002).Both riskfactorsthat "increase the probability of onset, digression toa more serious state, or maintenance of a problemcondition" and protective factors that modify risk areobserved at the individual, family, and environmentallevels (Fraser et al., 2004, p. 14). It recognizes thatthese forces exert different kinds of influence overthe course of the child's life (Bellin & Kovacs, 2006)and captures how it is possible for children who areexposed to similar adverse circumstances to havedivergent psychosocial outcomes (Greene, 2002).This integrated framework guided examination of

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the siblings' stories for themes of the salient risk andprotective factors operating in their daily lives.

METHODThe data reported here come from a larger mixed-method investigation that explored correlates ofadjustment in adolescent siblings of youths withSB (Bellin, 2006).The quantitative component ofthe study addressed the relationship of individual(attitude toward illness), family (family satisfaction,sibling warmth and conflict), and environmental fac-tors (peer support) to psychological and behavioraladjustment.The open-ended section was designedto tap the insider's perspective regarding the day-to-day experiences of siblings.We were particularlyinterested in identifying any additional salient as-pects of the sibling experience not included in thequantitative component of the study. Reported hereare the findings from responses to one open-endedquestion about sibling life included in an anonymousself-administered mail questionnaire.

SampleA convenience sampling strategy was used to recruit254 families from the Spina Bifida Association (SBA)and three SB clinic sites over a 15-month period.Tobe eligible to participate, the adolescent had to meetthe following criteria: be between ages 11 and 18years; speak English; have no current major healthcondition (for example, life-threatening, progres-sive, or incapacitating condition such as cancer orj uvenile diabetes) ; and resided in the same householdas the brother or sister with SB who was at least sixmonths old. Of the 224 eligible adolescents whocompleted the survey, 155 (69.2 percent) respondedto the open-ended question. No significant differ-ences were found between respondents and non-respondents on their psychological and behavioraladjustment or on key demographics such as gender,age, and race.

ProcedureThe study was reviewed and approved by the Insti-tutional Review Board of the associated university,the Professional Advisory Board of SBA, and thehuman subjects protections committees at the SBclinic sites. Interested families responded to flyersor newsletter advertisements circulated through theSBA and clinic sites. Mailed study packets includedconsent forms, the adolescent survey, a matchedparent survey that collected family demographics

and SB clinical data, and a return postcard for thepurpose of sending adolescent participants a $15gift card and entering participants into a $100 giftcard raffle (Bellin, 2006).

Data Collection and Data AnalysisData were collected through one open-endedquestion designed to elicit information about thesibling's experiences of living with SB. Specifically,participants were asked to "describe any additionalthoughts, feelings, opportunities, or challenges re-lated to living with a brother or sister who has SB.Topics for consideration might include the benefitsas well as the difficulties of having a sibling withSB in terms of friendships, activities, and familyrelationships."

The typical respondent wrote a half page ofcomments; however, a minority generated a singlesentence or several pages of reflections. Commentswere transcribed verbatim. Content analysis wasperformed on the data (Morse & Field, 1995).Theinductive process, in which the analysis process sys-tematically moved from the specific to the general(Padgett, 1998),began with the unitizing of raw datain which the smallest, stand-alone unit of data thatheld meaning was identified and isolated, whetherit was a single word, phrase, sentence, or paragraph(RodweU, 1998).The process continued with opencoding of the data in the development of emerg-ing domains and themes, and subthemes (Morse,1991). To assess for representation of the thematicresults across participants, each excerpt of raw datawas tagged with information about developmentalstage, gender, and birth order (older or youngerthan sibling with SB). Participants were groupedinto an early adolescence (EA) (10 to 12 years),middle adolescence (MA) (13 to 15 years), or lateadolescence period (LA) (16 to 18 years).Thoughsaturation, or repetition and redundancy in the data(Padgett, 1998), was observed, data from all 155participants who responded in the opened-endedsection were analyzed.

Our interdisciplinary research team used severaltechniques to enhance the rigor of the analysis. First,the authors with backgrounds in social work andnursing independently reviewed the transcripts todevelop a preliminary coding scheme. Next, the cod-ing scheme, developed through consensus decision,was applied to the set of transcripts, with decisionsabout the ongoing development and collapsingof domains, themes, and subthemes tracked in a

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methodological Journal (Sandelowski, 1993). Theraw reactions, impressions, and concerns, as well asthe identification of biases embedded in the researchprocess, were bracketed in a reflexive journal (Wall,Glenn, Mitchinson, & Poole, 2004).These method-ological and reflexive journals provided an "audittrail" for the work to be cross-checked (Lincoln& Guba, 1985). A blind reviewer with expertise inqualitative research and clinical practice in healthcare independendy tracked the process of reachingthe final domains, themes, and subthemes from theinitial transcripts.The interdisciplinary triangulationfurther enhanced the rigor and depth of understand-ing of the results (Janesick, 1998).

RESULTS

Participants reported a mean age of 13.83 years{SD = 2.26) and had lived with a brother or sisterwith SB for an average of 9.96 years. Paralleling thedemographics from the larger study (Bellin, 2006),a majority was female (n = 88,56.8 percent), white(n = 138, 89 percent), older than the sibling withSB (« = 110,71 percent), and resided in two-parenthouseholds (n = 133,85.8 percent) with an annualincome of$46,000 or more (N= 100,64.5 percent).There was a fairly equal distribution of participantsacross the developmental periods, though more fellin the MA (n = 68,43.9 percent) than in the EA (« =50,32.3 percent) or LA period {n = 37,23.9 percent).The majority of youths \vith SB had a shunt (« =132, 85.2 percent), with an average of 2.5 revisionsto the shunt {SD = 6.35). A lumbar-level lesion {n= 62, 42.8 percent) was most often reported. Last,nearly half of the parents considered the SB to besevere in nature {n = 75, 48.7 percent).

Analysis of responses in the open-ended sectionrevealed the following four domains capturing thelived experience of siblings of youths with SB:domain 1: the Rewards and Consequences of SB;domain 2: the Journey Toward Acceptance of SB;domain 3: the Emotional Climate of Siblings; anddomain 4: the Qualities of the Social Environmentof Siblings. Each theme begins with a descriptionemerging from the data, a synthesis of participants'data pertinent to the theme, and select exemplars.

Domain 1 : The Rewards and Consequencesof SBThe first domain taps into the vast and varied waysSB is present in the lives of the siblings. Four themesilluminating its diverse influences emerged: (1) im-

pact of spina bifida on daily life; (2) the omnipres-ence of spina bifida; (3) opportunities created by theexperience of spina bifida; and (4) the developmentof unique knowledge and responsibilities.

Theme Í: Impact of SB on Daily Life. This themereflects the sibling's attitude about the impact of SBon day-to-day life routines. Some considered theirlives to be "different but not hard." One male siblingin middle adolescence shared, "living with someonewith a physical disability doesn't have many disad-vantages, and some decent advantages, so spina bi-fida probably isn't as bad of a handicap as one mightthink, if'handicap' can even be applied, at least frommy perspective." A second group of participants,typically those in early adolescence, acknowledgeda more pronounced impact of SB but seemed toexternalize its impact from their feelings about theirsibling. One sibling, for example, acknowledged,"even though her hardships have limited me, I loveher unconditionally through embarrassment, tired-ness, challenges, and just plain hard moments." Incontrast, a small group of siblings shared stories thatreflected greater negativity and personal hardships,"Sometimes having a brother with spina bifida doesnot allow me to do certain things or have specificthings.. .until I move out of the house and graduatefrom college, I will have trouble experiencing thethings a normal child would."

Theme 2: The Omnipresence of SB. Anothertheme emerging in this domain relates to thepervasive nature of SB. It surfaced in a number ofdimensions of sibling life, and especially in health,future, and financial concerns and restrictions onsocial life. These aspects of the SB experience werefelt most by girls in early or middle adolescence. Onecommented,"Having a sister with spina bifida is hardbecause you always have to be careful of what shedoes and where she goes." The uncertainty of illnessexacerbation and possibility of death also triggeredalarm,"Sometimes I feel I will lose her.That makesme sad." Another shared, "He is sick a lot and thatcan be pretty scary. Sometimes you don't even knowif he'U live." Concerns about the future care needsand capacity for independent living highlighted thechronicity component of SB. One sibling who was atwin raised the following questions,"How will spinabifida affect her adult years? Will she have to livewith my parents? Will she be able to drive? Theseare things I worry about."

The financial cost of "medical stuff" associatedwith SB was another common indicator of its

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pervasive nature. A girl in middle adolescence pro-vided a particularly candid picture of how SB canshift financial priorities,"Another'down' of havinga brother with spina bifida is that he needs to havecrutches, braces, a wheelchair, special bikes, surger-ies, etc. These all cost extreme amounts of money,which could have been spent on other things...the house, toward the mortgage, or something."Finally, participants recalled how SB at times limitedfamily and individual social life opportunities. Oneolder female sibling in early adolescence lamented,"Sometimes you can't go out to some places thataren't handicap accessible... sometimes I have tostay home and watch her and not go out with myboyfriend or friends."

Theme 3: Opportunities Created by the Experi-ence of SB. Helping to balance out perceived chal-lenges were personal benefits generated by the SBexperience. Siblings in the early adolescence periodreflected more on the superficial rewards such ascoveted parking spots, "one good thing about hav-ing a sister with spina bifida is that you get goodparking spaces" and amusement park privileges, "wecan get on rides quicker in some theme parks." Incontrast, participants in the middle or late adoles-cence period tended to emphasize more intrinsicbenefits of their experience found in unique socialconnections, "I have had the privilege of meetingand getting to know many amazing people" andpersonal growth, "Having a sister with spina bifidahas helped me in a way because I feel I am morerespectful of other people. I understand that peopleare different and I don't judge them." The experi-ence of SB also shaped their worldview in termsof increased appreciation for their own abilities.One sibling, for example, learned to "not take forgranted my health and most importandy, my legs."Another commented on her freedom of not havingto worry about bowel and bladder problems, of nothaving "to 'remember' to go to the bathroom...Iwas blessed with a body that needs litde care incomparison."

Theme 4:The Development of Unique Knowledgeand Responsibilities. A final theme that emerged inthis domain related to sibling knowledge and tasksspecific to SB, as well as more general responsibili-ties in the home that, in their opinion, differentiatedthem from peers. One male in middle adolescenceconsidered, "having a brother with spina bifidaputs many responsibilities on me that my peers andclassmates do not have." Other siblings wrote that

the additive responsibilities caused them to "maturefaster." Involvement in caregiving also generatedspecialized knowledge related to SB. Their storiesrevealed familiarity with physical therapy stretchingexercises, shunt protection, and surgeries commonto SB, including back closure and shunt revisions.One female sibling shared, "When we're playingwith her or holding her, we try to incorporatephysical therapy methods, and when she was young,we had to be extra careful of her shunt area, back,and neck."

Domain 2: The Journey towardAcceptance of SBThis domain reflects the process in which siblingswere engaged to adjust to and integrate SB intotheir lives. Five themes emerged: (1) coming toterms with SB; (2) questioning the fairness of SB;(3) more challenging early years; (4) perceiving thesibling as "normal"; and (5) the role of spiritualityin the meaning-making process.

Theme 1: Coming toTerms with SB. The develop-ment of coping mechanisms to meet the challengesthat"are never going to change" emerged as a centralpart of this journey. The capacity to acknowledgehardships and to embrace the positive aspects oftheir experiences w as an important balance for somesiblings. One male participant in early adolescenceemphasized the value in "finding the good side ofthings." Other stories were less positive but similarlystressed the need to develop individual and familystrategies to adjust and adapt to the ongoing pres-ence of SB in their lives. A girl in late adolescenceadvised,"No one is exempt from this burden, and it'ssomething each family must learn to deal with."

Theme 2: Questioning the Fairness of SB. Anothercomponent of the journey toward acceptance forsome participants was a search for understandingwhy their sibling had SB and not themselves orothers. An older girl asked, "Why this litde girl?She didn't do anything to deserve this kind of life."Survivor guilt, or guilt stemming from the status ofbeing the"healthy"sibling, was noted in some stories.One participant wresded with this experience in thefollowing way, "She's younger than I am and has alot of health problems. Sometimes 1 wonder whyshe has so many and I don't have any."

Theme 3: More Challenging Early Years. Theirstories also shed light on the trajectory of adjust-ing and adapting to SB. Participants acknowledgedgreater difficulty in the early years, "I used to say

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things like I would rather have a normal sister andcall her names and say I wish you weren't my sister,but now I love her for who she is."The passage oftime has perhaps created room for them to makesense of and accept SB in their lives. For example,one girl, reflecting on her life, said, "When I wasyounger, I used to be bummed about having abrother with spina bifida, but now that I'm older, Irealize it's not his fault or anyone else's."

Theme 4: Perception of Sibling with SB as "Nor-mal. "Despite the complex care responsibilities andphysical limitations associated with SB, participantswrote about the importance of viewing and treat-ing their siblings no differendy than they wouldif the sibling did not have SB. This "normalizing"piece emerged as another step in the journey ofaccepting and integrating SB into their lives. Oneparticipant shared,"I don't see her as a sick little girlwith problems when I look at her. I see a loving,caring, funny girl. I don't judge her at all. I take herfor who she is."

Theme 5: The Role of Spirituality in AchievingAcceptance. A final theme emerging in some storieswas how their spirituality guided them to a place ofunderstanding. One participant shared the followingreflection,"We are all part of God's plan and if it isfor my little sister to have spina bifida, then it mustbe for a reason."Their beliefs and trust in a higherpower gave them patience "to let the special plan forthe sibling work itself out" as described by an oldersibling. It also provided comfort during periods ofmedical uncertainty; "it pains me when she is in thehospital, yes, but I know God loves her and is goingto take care of her."

Domain 3: The Emotional Climateof SiblingsFive themes reflecting the complexity of the siblings'emotional state emerged in the third domain: (1)overall positive perception of self and life experi-ences; (2) conflicted, ambivalent feelings about hav-ing a sibling with SB; (3) protective and empathieconcerns for sibling with SB; (4) struggles withpublic response; and (5) feeling undervalued andoverlooked.

Theme 1: Overall Positive Perception of Self andLife Experiences. Though acknowledging "someflaws," participants generally described themselvesand their life experiences in favorable terms. Onlya minority seemed to be struggling. However, thesestories did not point to the experience of living with

a sibling who has SB as the root of their difficulties.For example, a female sibling in middle adolescencesummed up her life in the following way,"One badincident after another. That's my Hfe. It seems thatmy life will never be happy. I don't think... I amalways depressed and whenever (rarely) I'm happy,I get depressed immediately."

Theme 2: Conflicted, Ambivalent Feelings aboutHaving a Sibling with SB. Particularly strikingwere reflections that shed light on the emotionalcomplexity of their feelings about their brothersand sisters with SB. Their stories suggest that theexperience of having a sibling with SB is one that"stirs up many emotions." The "emotional rollercoaster" experience of SB came through in thew ords of a younger participant in early adolescencewho disclosed, "I am sad when my sister is in thehospital. I get angry when we have to go to thedoctor. I love my sister." Undertones of guilt, de-privation,jealousy,and embarrassment also surfacedin their stories, especially among female participantswho were in early or middle adolescence. Someexperienced shame in complaining about "smallstuff when I should be stronger because my sisterhas been through so much." Envy was often linkedto perceived differences in attention and unevendistribution of family resources, as indicated by anolder sibling, "Our family has devoted a lot of timeand money on her. It can really make me jealous."Finally, some participants suggested that having asibling with SB is "hard and embarrassing." Anothercommented that the embarrassment left her wantingto "curl up in a hole and disappear."

Theme 3: Protective and Empathie Concernsfor Sibling with SB. Even when struggling withnegative, and at tiines confusing, emotions abouthaving a brother or sister with SB, participantsconsistently expressed strong protective concernsand empathy for the adversity encountered by theirsiblings.Their stories suggest that witnessing teasingand bullying was particularly difficult. One siblingproposed to challenge perpetrators by having themconsider,"How would you feel if somebody cameup to you and just started pushing you around andyou were helpless to do anything about it." Someparticipants appeared to move beyond empathy andto a place of internalizing their siblings' challenges.For example, a male participant declared,

I think it is wrong that people think differentlyof her because of her disability. It makes me

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very angry when people make fun of her. 1mean angry enough that when they make funof her if they are about my age and a boy I willbeat them up."

Another admitted, "It tears me up when he isrejected or made fun of." Others had difficulty ac-cepting their siblings' life-long physical limitationsand delayed or missed developmental milestones,"Sometimes it breaks my heart when she asks mequestions like 'What's it feel like to walk?' And itjust hurts to know that she may never get to walkin her life." Another similarly shared, "The hardestthing about having a sibling with spina bifida iswatching her struggle with everything that comeseasily to most people."

TIteme 4: Struggles with Public Response. We alsolearn from participants'reflections that a perceptionof being judged by strangers weighed heavily ontheir minds. Because many youths with SB use awheelchair or leg braces to ambulate, these physicaldifferences may set them and their families apart inpublic settings. The experience of being stared atand "having your every move scrutinized because ofyour sister" struck an emotional chord, particularlywith female siblings who were in middle or lateadolescence. One sibling shared, "When we w ouldgo to the store, I would often catch people lookingat us and them staring. I would give them a look andthey would turn away. It made me feel sad."

Theme 5: Feeling Undervalued and Overlooked.An undercurrent of frustration about a general lackof awareness of how SB affects siblings was alsoevident in their stories. This theme increases ourappreciation of the importance in acknowledgingand valuing the sibling experience. The raw emo-tions of one sibling's experience came through inthe following story.

My family went on a trip to Disneyland once,all expenses paid, with a group of other families,all of which had a chronically ill child. It wassponsored by aTV station.Their goal was to giveus one weekend with "normal" lives. I watchedthat TV station one morning and someonecalled in, saying to leave the siblings at home somore sick children can go. I cried. People seemto think that the siblings of special needs kidsare void of emotion. That trip was amazing forone reason: People cared about making my lifenormal—not just hers.

Difficulties in accessing resources for siblings fur-ther exacerbated feelings of isolation,"I have lookedfor a type of support group—anything for siblingsof special needs kids.There is nothing. Most peopledon't understand.. .something like a support groupwould really help, but usually I end up keeping mostof it to myself."

Domain 4: Qualities of the SocialEnvironment of SiblingsCaptured in this final domain are the qualities ofsiblings' social interactions in the family and peercontexts. Five themes emerged: (1) cohesive familyrelations, (2) experiences of differential treatmentand expectations, (3) warmth and closeness in thesibling relationship, (4) influence of SB on the siblingrelationship, and (5) the nature of peer relations.

Theme 1: Cohesive Family Relations. The par-ticipants' stories reflected a positive, united familyenvironment. The experience of SB seems to havestrengthened family ties, with members drawingcloser and rallying to support each other, especiallyduring periods of health crisis and uncertainty.Thesiblings' stories highlight family resilience in theface of these challenges, "Times have gotten hardin our family with the coundess surgeries, but I amproud of my entire family for being so strong andsupportive of each other." In fact, some consideredthe shared SB experience to generate family bondsthat seemed "greater than those of others."

Theme 2: Experiences of Differential Treatmentand Expectations. Greater diversity was found in thesiblings'perception of discipline and distribution ofresponsibilities in the home environment. A subsetof participants denied any "special treatment in ourhouse" and instead depicted the family environmentas one in which "everyone, including my sisterwith spina bifida, is treated the same, disciplined,rewarded, etc. the same." Other participants, oftenfemale siblings in early or middle adolescence, de-scribed different levels of expectations, chores, andattention in the family environment. However, thesediscrepancies were generally accepted as a part oftheir hfe, "My parents are harder on me, and easieron her. It is often unfair, but I cope."

Theme 3: Warmth and Closeness in the SiblingRelationship. Despite the perceived inequalities inthe family environment, the majority of participantsused warm, positive terms to describe the siblingrelationship. They expressed great admiration fortheir brothers and sisters, "My sister is an amazing

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We learn from participants stories that

risk experiences are also encountered in the

broader social spheres of their lives.

person. I don't think I could handle all the doc-tor appointments and medicines I would have totake," and commonly regarded them as friends.Theextent of affection was unmistakable in the follow-ing statement from a sibling in early adolescence:"I love my sister more than I like chocolate and Ilove chocolate. She is the best thing in my life." Anolder boy considered the experience of SB to havecreated a particularly strong bond,"Her having spinabifida has somehow given me a special love for her."Though sibling conflict and estrangement surfacedin some stories, the discord appeared to fall alonga continuum of typical sibling interactions. Forexample, one girl in middle adolescence shared thefollowing:"My sister and I don't get along too badly.We share lots of things but not much of thoughtsand feelings."

Theme 4: Influence of SB on the Sibling Relation-ship. Participants' reflections generally minimizedthe impact of SB on the sibling relationship. Infact, this relationship was commonly depicted asno different from that of peers without a CHC.An older female emphasized, "Spina bifida is not afactor for me when it comes to me and my rela-tionship with my brother. It's just there is nothingspecial." However, a sense of loss about the inabilityto share regular childhood activities, especially thosethat involved a physical component, surfaced in thestories of participants in early or middle adolescence.A younger boy expressed this loss in the followingway,"I do not have the freedom to go out and playwithin our neighborhood with a companion. I lookat other children with brothers or sisters who areplaying outside, riding bikes, or swimming, and Isay to myself'What would it be like if my brothercould walk?' "

Theme 5: The Nature of Peer Relations. Rela-tionships with peers emerged as a final theme ofsibling life in participants' reflections. Here theydenied a negative effect of SB on the ability to es-tablish or maintain friendships. One sibling shared,"It's not really difficult for me to make friends orhave them over because they always think that he'sthe cutest thing." They described supportive peerrelationships and seemed to develop a social circle

comprised of friends with heightened maturity. Anolder male sibling considered, "My friends are niceboys and enjoy her company."The inclusive effortsof their friends were acknowledged and appreciatedhy the sihlings, "I have very understanding friends.My brother likes to pretend all my friends are hisgirlfriends.They go along with it and make pretenddates with him. I am very happy that I have thefriends that I do."

DISCUSSIONThe siblings' candor and generosity in sharingpersonal reflections shed light on key risk and pro-tective influences surfacing in several dimensionsof their lives. These stories reflect greater risk forpsychosocial difficulty in the early years of adjust-ment to SB, with stories of deprivation, loss, andunmet needs more common. A major contributionof their participation in this study is our enhancedappreciation of the intense and, for some, conflictedfeelings siblings hold about having a brother or sisterwith SB, particularly for those in early adolescence.Mixed feehngs, including affection, sadness, anger,embarrassment, and protection, may cause confu-sion for some. Other stories suggest there may bereluctance to share the full depth of their emotions,that some tend to repress their reactions to hardshipsin light of the perceived greater difficulties expe-rienced by their brothers and sisters. Findings of arestricted expression of emotions parallel the workof Hollidge (2001), who found that siblings tendedto internalize their difficulties.This internalizationprocess may heighten vulnerability to negativepsychosocial outcomes for some.

We learn from participants' stories that risk ex-periences are also encountered in the broader socialspheres of their lives. Witnessing the teasing andbullying of their sibhngs with SB was a particularlydevastating experience for some. Though this partof sibling life was absent in the previous studies inSB, these data indicate a deep emotional effect—anger, sadness, and frustration in response to abusewere palpable in their words. Participants' storiesreflect a similar emotional pain brought about by thefamily's experience of being stigmatized in publicsettings. It is interesting that although participantsgenerally denied a direct negative effect of SB ontheir own lives, their stories suggest a heightened riskfor emotional vulnerability linked to observationsof their siblings' experiences with marginalization,discrimination, teasing, and bullying.

206 Health drSocial Work VOLUME 33, NUMBER 3 AUGUST 2008

Another risk factor found in the social environ-ment of siblings is related to perceived challenges inidentifying and linking up with formal and informalresources. Stories shared in this research suggest thatresources to address and support sibling needs arehmited and difficult to access. The opportunity toparticipate in this research appeared to be a catharticexercise for some, as indicated by unsolicited com-ments about how meaningful it was to have an outletto communicate their feehngs. One sibling wrote,"Thank you for giving me a chance to express myfeehngs," and another expressed, "thank you forlistening to what I have to say."These voices suggest,however, that a more consistent and accessible avenueto share and process feehngs is needed. Given thecurrent emphasis on family-centered care across dis-ciplines, the recommendation offered by one siblingfor us to learn about "what it is like to be a siblingof someone with special needs" and, ultimately, toaddress unmet needs, seems paramount.

A range of inherent personal resources and pro-tective influences found in the family and broadersocial setting might mitigate the effects of the riskexperiences that sibhngs encounter and protect themfrom emotional distress or negative psychosocialoutcomes. For example, we learn from participants'stories that the development of coping strategiesthat enable them to acknowledge hardships andto embrace unique opportunities related with SBis an important step in their journey of coming toterms with the pervasive presence of the conditionin their lives. A protective influence in "finding thegood side of things" is supported by research linkinga positive attitude about the effect of SB and healthypsychological functioning in sibhngs (Taylor, Fuggle,& Charman, 2001).The development of specializedknowledge related to SB emerged as another keypiece in achieving acceptance. Similar to previoussibling research in SB (Kiburz, 1994), participantsreflected on surgical techniques (for example, shuntplacement) and bladder management programs. Itis possible that learning about SB and taking partin caregiving activities are empowering experiencesthat, in turn, protect against fear, anxiety, and uncer-tainty. Indeed, a lack of knowledge about the CHChas been proposed as an underlying cause of sibhngmaladjustment (Williams et al., 1997).

A particularly intriguing finding was the rolespirituality played in helping some siblings suc-cessfully integrate SB into their lives. Their behefin a higher power facilitated the meaning-making

process and provided comfort during times of uncer-tainty or crisis. However, the influence of spiritualityhas generally been overlooked in studies of siblingadjustment. Further confounding the issue is theapparent lack of prominence of spirituahty in thelives of adolescents with SB (Bellin, Sawin, Roux,Buran, & Brei, 2007) and their parents (Sawinet al.,2003). Consequently, more research is indicated tobetter understand how it may be tapped into as aprotective mechanism.

Several resources found in the siblings' socialenvironments may also provide a protective bufferagainst negative psychosocial outcomes in the faceof hardships. Consistent with reports from adoles-cents with SB (Bellin et al., 2007) and their parents(Sawin et al., 2003), the shared SB experience seemsto have strengthened family bonds. From a familysystems perspective, we appreciate that the healthof the surrounding family environment and siblingadjustment are often interrelated and mutuallyreinforcing. A protective influence of the familymilieu on sibling adjustment is substantiated byour quantitative work that found satisfaction withfamily interactions to be associated with positiveadjustment outcomes (Bellin, 2006). In these data,the sibhng relationship seemed to be a particularlyspecial sanctuary.Their stories consistently revealedgreat affection and admiration for their brothers andsisters with SB. However, whereas this relationshipwas generally perceived as no different from that oftheir peers, some participants seemed to mourn theloss of a typically developing sibhng to share regularchildhood activities. The physical limitations havepreviously been described as one of the hardest as-pects of having a sibhng with SB (Pinyerd, 1983).

Strong, supportive peer relations form anotherlayer of protection in the lives of these participants.Participants seemed to have aligned themselveswith companions who welcome and embrace op-portunities to include the sibhng with SB in socialactivities. Despite the multiple, time-intensive waysSB may be present in the lives of sibhngs, includingdaily caregiving responsibihties, frequent health careappointments, surgeries, and hospitalizations, sibhngshave carved out time to develop and maintain closepeer relations.

In summary, these data offer new insights intothe range of risk and protective influences presentin the lives of sibhngs of youths with SB, a storyshared from the perspective of siblings themselves.A final contribution of this research was to delin-

BELLIN, KOVACS, AND SAWIN / Risk and Protective Influences in the Lives of Siblings ofYouths with Spina Biflda 207

eate salient concepts of sibling life previously notincluded in the larger program of research testing amodel of sibling adjustment (Bellin, 2006). Specifi-cally, emerging from the data were sibling empathy,effect of teasing and bullying, development of uniqueSB knowledge, identification of siblings in earlyadolescence as potentially at risk of difficulties, andthe role of spirituality in adjustment.

IMPLICATIONS FOR PRACTICEA family-centered assessment should, by definition,include questions about the sibling experience.Timespent addressing sibling needs might help preventthe onset of more profound psychosocial difficul-ties.These data suggest it is important to screen forthose siblings who are socially isolated, report a lackof support in their home environment, are confusedor uncertain about their sibUng's condition, or holda negative appraisal of the effect of SB on their lives.Also, several themes emerging in this research sug-gest that the siblings may be at risk of "getting lost"or perhaps being treated differently by parents andothers. One practice implication to help minimizethis risk is to remind parents of the importance ofindividual time with each child. Although this istrue in all families, it may be especially importantin families with a child with a chronic conditionlike SB who may require additional parental timeand attention related to medical appointments,hospitalizations, and daily care activities.

Social work practitioners may address these multi-level risk factors through group work. Interactingwith peers who similarly have a sibling with a CHChas yielded positive effects on sibling adjustment(Naylor & Prescott, 2004). A group setting mayprovide siblings with a safe space to express andprocess their range of emotions and experiences, itis hoped without fear of judgment. By sharing dif-ficult experiences in a protected group environment,siblings may comfort each other, provide sugges-tions for change, and perhaps become empoweredby the process.

METHODOLOGICAL CONSIDERATIONS ANDFUTURE DIRECTIONSThe lack of demographic diversity in this studyemerges as an important methodological consider-ation, as the risk and protective influences surfacingin the lives of these siblings may not reflect thosefrom more diverse ethnic or racial backgrounds andfamily environments. Other limitations relate to the

nature of data collection.The data were potentiallyrestricted by the cognitive ability of participants toexpress themselves in writing. In addition, the lackof opportunity for foUow-up or probing limits ourconfidence in the themes that emerged in analysisand the patterns of these themes across develop-mental stages, gender, and birth order.

The singular lens on sibling life is also noteworthy.To fuUy appreciate the sibling experience, it wouldbe important to gain a better understanding of thereciprocal relationship between the siblings. Ourteam is particularly interested in interviewing bothmembers of the sibling dyad to enrich our under-standing of interaction in this special relationship. Wealso hope that future investigations explore in moredepth the experience of teasing and bullying withsiblings across developmental periods.This aspect ofsibling life is understudied but commands attentiongiven the immediate and long-term ramifications forboth children with SB and their siblings. Ultimately,the domains and themes emerging in these dataprovide a foundation on which future explorationof the lived experience of siblings may be based.

CONCLUSIONThis analysis may enhance family-centered socialwork services by delineating key aspects of theadolescent sibling's experience of living with SB.Data reveal generally resilient siblings who, overaU,have successfully integrated the challenges and op-portunities generated by the experience of SB.Therisk experiences described in their stories no doubtpresent credible threats to their psychosocial health,but by helping siblings draw out and build on theirinherent strengths and protective resources foundin the broader social environment, we may bettersupport their resilience. liH'l'i

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Melissa H. Bellin, PhD, LSCUÇ is assistant professor and

chair of the Health Specialization, School of Soeial Work,

University of Maryland, 525 West Redwood Street, Balti-

more, MD 21201; mbellin@ssw.umaryland.edu. Pamela].Kovacs, PhD, MSVl{is associate professor. School of Social Work,

Virginia Commonwealth University, Richmond. Kathleen J.Sawin, DNS, FAAN, is professor and joint researeh chair in

the Nursing of Children, University of Wisconsin-Milwaukee

College of Nursing and Children's Hospital, Wisconsin.

This project was funded in part by the National Institutes of

Health Predoetoral Fellowship for Students with Disabilities

# F31HD047998-01A1, the National Association of Social

Workers Foundation Jane B.Aron Doctoral Fellowship, and the

Virginia Organization of Health Care Social Workers. Portions of

this article were presented at the Annual National Spina Bifida

Association Conferenee,June 2006,Atlanta, and at the Society

for Soeial Work and Research Conference, January 2007, San

Francisco. The authors would like to thank the speeial siblings

who participated in this research.

Original manuscript received November 8. 2006Final revision received October 12, 2007Accepted October 24. 2007

BELLIN, KOVACS, AND SAWIN / Risk and Protective Influences in the Lives of Siblings of Youths with Spina Bifida 209