role of spirituality and religion in family quality of … of spirituality and religion in family...

Education and Training in Developmental Disabilities, 2004, 39(2), 95-108© Division on Developmental Disabilities

Role of Spirituality and Religion in Family Quality of Life forFamilies of Children with Disabilities

Denise J. Poston and Ann P. TurnbullUniversity of Kansas

Abstract: Results from a qualitative inquiry investigating conceptualization of family quality of life areprovided. Focus groups and individual interviews were comprised of 187 individuals that included familymembers (e.g., parents, siblings) of children with a disability, eight individuals with a disability, familymembers of children without a disability, service providers, and administrators. Data were collected in urbanand rural settings to elicit participants' understanding of domains of family quality of life. Thlemes ofspirituality and religion in the context offamily quality of lifeforfamilies of children with disabilities areexplored in this article. Families described the importance of spirituality in their lives and their participation inreligious communities. Discussion and implications include strategies to enhancefamily spiritual well being, toprovide spiritually sensitive supports, and to promote inclusive religious communities for children with mentalretardation and developmental disabilities (MR/DD) and theirfamilies.

Despite a long history of quality of life studies,most research efforts have focused on concep-tualizing and measuring individual quality oflife with the notion of family quality of lifedrawing attention only recently (The Accred-itation Council, 1995; Bailey et al., 1998; Cum-mins & Baxter, 1997; Turnbull et al;, in press).It is not surprising, therefore, that the concep-tualization of family quality of life primarilydepends on literature about individual qualityof life.

Individual Quality of Life

The definition of individual quality of life hasevolved somewhat over the last three decadesand has been defined differently dependingon the researcher (Brown, 1997; Cummins,1997; Felce, 1997; Hughes & Hwang, 1996;O'Boyle, 1997; Schalock, 1997, 2000). Regard-less of the specific wvay individual quality of lifeis defined, researchers generally have in-cluded these common concepts: general feel-

ings of well-being, feelings of positive socialinvolvement, and opportunities to achieve

Correspondence concerning this article shouldbe addressed to Denise Poston, Beach Center onDisability, Hawvorth Hall, 1200 Sunnyside Ave,Room 3136, Lawrence, KS 66045-7534.

personal potential (Schalock et al., 2002).They have also agreed that quality of lifeshould include various domains of life andtaken together as a whole should encompassthe entirety of life (Cummins; Felce & Perry,1997, Raphael, Brown, Renwick, & Rootman,1996; Schalock, 1997; Schalock et al.).

Several authors in individual quality of lifestudies have suggested that quality of life in-cludes six domains and associated indicators(Schalock et al., 2002): (a) physical well-being(e.g., health, nutrition, mobility, and daily liv-ing activities); (b) emotional well-being (e.g.,happiness, contentment, freedom from stress,self-concept, and religious belief); (c) socialwell being (e.g., intimacy, friendships, com-munity activities, and social status and roles);(d) productive well-being (e.g., personal de-velopment in education or job, leisure andhobbies, choice and autonomy, and personalcompetency); (e) material well-being (e.g.,ownership, financial security, food and shel-

ter, and socioeconomic status); and (D civicwell-being (e.g., privacy, voting, access, civicresponsibilities, and protection under thelaw). The indicators listed here are not anexhaustive index, but instead, provide a dy-namic list that may be added to and continu-ously refined (Cummins & Baxter, 1997;Felce, 1997; Gardner, Nudler, & Chapman,

Spirituality and Religion / 95

1997; Hughes & Hwvang, 1996; Schalock,1996).

Family Quality of Life

Although individual quality of life researchhas produced sufficient momentum to resultin an international consensus document(Schalock et al., 2002), family quality of life isat the very beginning of the conceptualizationprocess. It appears that family quality of lifeshould be a natural extension of the ivork onindividual quality of life, especially given thestrong emphasis in the disability field on afamily-centered service delivery model. Sincethe mid-to-late 1980s, there has been a grow-ing recognition of the importance of family-centered service delivery characterized byfamily choice, a family strengths perspective,and the family as the unit of support (Allen &Petr, 1996; Bailey & McWilliam, 1993; Dunst,Johnson, Trivette, & Hamby, 1991; Turnbull,Turbiville, & Turnbull, 2000). Bailey and col-leagues (1998) have proposed quality of life offamilies of children wvith disabilities as a 'use-ful indicator of outcomes of policy initiatives"(p. 322).

Given the complexity in defining family intoday's society, in addition to the difficulty of

defining quality of life, definingfamily quality oflife offers even greater challenges. Poston andher colleagues (2003) present the followvingdefinition of family and family quality of life:

Family: people who think of themselves aspart of the family, whether related by bloodor marriage or not, and who support andcare for each other on a regular basis.

Family quality of life: conditions where thefamily's needs are met, family members en-joy their life together as a family, and familymembers have the chance to do things thatare important to them.

Spirituality, Religion and Disability

Most researchers and practitioners agree thatthere is a difference between spirituality andreligion. Many people think of themselves asspiritual people but not as followers of a spe-cific religion. Researchers and practitioners inhuman service professions define spiritualityas a basic aspect of human experience anddevelopment and experience, common to all

people, cultures and religions (Canda, 2001).It is also defined as the area of life that in-cludes the need to find meaning in our exis-tence; a search for fulfilling relationships be-tween oneself and others, the universe, andreality as one views and understands it; as wellas the way that we respond to the sacred(Canda, 1999; Fitchette, 1993; Gaventa; 2001).Canda and others (Canda, 1999; Fitchette;Gaventa) assert that people have a spiritualaspect to themselves along with the biological,psychological and social aspects.

Religion is defined as the institutionalizedand organized patterns of beliefs, moral, ritu-als and social structures that people create tohelp fulfill their spiritual quest (Canda, 1999;Fitzgerald, 1997). Spirituality is expressedthrough religion and religious practices, but itcan also be experienced through nonreligiousand nonsectarian forms (Canda). Spiritualityis personal but can also be shared togetherin communities and religious organizations,(Canda).

There is increasing evidence to suggest thatit is a person's inner world of values, beliefsand inspiration that helps determine the pro-cess of coping (do Rozario, 1997). Addition-ally, there are hundreds of studies in fields of

healt, mental health and social wvork thatpoint to the role that religious and spiritualbelief and practices contribute to resilience inpeople who experience illness or disabilities(Canda, 2001).

Views of illness and disability are inter-tvined with religious or spiritual beliefs(Zhang & Bennett, 2001). Sevensky (1981)suggested that religion serves three functionsfor people who are ill: (a) provides a frame-work to make meaning of their illness, (b)provides practical resources, and (c) provideshope. Zea, Quezada, and Belgrave (1994) in-dicated that for Hispanic families spirituality,specifically faith in God's will, can lead topositive acceptance of disability. Disability mayalso be seen as a trial that is to be endured oras punishment for sin or wrongdoing. Zhangand Bennett indicated that families may relyon cultural or spiritual traditions to help theminterpret disability, especially in the absenceof other information.

Researchers and practitioners have begunto appreciate different approaches to rehabil-itation and/or education of persons wvith dis-

96 / Education and Training in Developmental Disabilities-June 2004

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abilities including spiritual approaches (Byrd,1997). In medicine, Frank (1975) assertedthat there may be too much emphasis on heal-ing the body and not enough on the mind.Byrd posits that one way to change emotionalstates is to focus on an individual's spirituality.He described research in spirituality andhealth, and emphasized that spirituality has apositive effect on health and healing; Byrdalso endorses spiritual tools (e.g., prayer andworship) being used in conjunction with med-ical and psychological tools.

Lane (1995), who herself experiences a dis-ability, addressed the topic of anger and dis-ability, including anger at God. She says,"healing begins as we who live with disabilitiesrecognize our anger and give credibility to it"

(p. 110). She goes on to challenge people toeither "choose to remain angry over what hasbeen lost or never realized, or find joy andgrace in what has been given and in what canbe" (p. 110). She suggested that part of thisjourney from anger to joy includes question-ing God[and working through faith to re-establish that broken relationship with God.She asserts that the spiritual journey enables aperson to "live with rather than suffer from"(Lane, 1992, p. 53) a disability.

Given then that spirituality has an impor-tant role in individual quality of life and in

people's search for wholeness and meaning inlife, it is no surprise to find that spiritualityand specifically religious practices, have a ma-jor focus in family quality of life as seen in thestudy described in this article. Questions of

interest for this research wvere as followvs:

What role do spiritual or religious beliefsand practices play in family quality of life?

How can community organizations contrib-ute to the enhancement of families' spiri-tual wvell being?

Method

This research was guided throughout by aparticipatory action research (PAR) processthat involved collaboration with family mem-bers, service providers, administrators, and re-searchers from education, human and socialservices, and health to insure maximum rele-vance (Santelli, Singer, DiVenere, Ginsberg, &Powers, 1998; Turnbull, Friesen, & Ramirez,

1998). We used focus groups and individualinterviews for data collection. Focus groupsprovided a number of advantages, specifically,a responsive context for people who have nottraditionally been encouraged to voice theirperspectives on sensitive topics (Krueger,1994; Rubin & Rubin, 1995). Individual inter-views were primarily used to gain perspectivesof parents who do not speak English at all orwho speak English on a limited basis. Individ-ual interviews enabled use of interpreters thatwould have been difficult to incorporate intofocus groups.

Participants

Focus groups. We conducted focus groupsin three locations: (a) Kansas City, Kansas (ur-ban), (b) New Orleans, Louisiana (urban),and (c) Granville County, North Carolina (ru-ral). In general, each location had (a) tvofocus groups of families with children withdisabilities, (b) two focus groups of families ofchildren wvithout disabilities, (c) one focusgroup of service providers, and (d) one focusgroup of administrators. There was also onefocus group of people wvith disabilities inNorth Carolina.

In collaboration with local PAR advisors ineach site (parent and professional leaders),we used purposive, maximum variation, inten-sity and convenience sampling strategies torecruit participants (Erlandson, Harris, Skip-per, & Allen, 1993; Krueger, 1994; Lincoln &Guba, 1985; Patton, 1990). Additionally wefollowed their advice about the most appro-

priate vay to configure groups to maximizethe participants' comfort and potential forresponsiveness. Tables 1 and 2 report the de-mographic characteristics of family membersand professionals respectively.

Individual interviews. We conducted inter-views in the Kansas City area with 18 parentsfor whom English is not their primary lan-guage and ten service providers who regularlyprovide supports and services to families withlimited English proficiency. We worked wvithparent leaders and with agencies that providedirect services to children and families withlimited English proficiency (e.g. school-basedcoordinators of the English as a second lan-guage program) to identify participants. Localleaders provided the first contact with families


TABLE 1

Participant Demographics: Family Members (n = 137)

Families of Families who useChildren with English as a Families of Children Individuals withDisabilities Second Language Without Disabilities Disabilities

Variable (n = 78) (n = 18) (n = 33) (n = 8)

GenderFemale 55 17 29 3Male 23 1 4 5Missing 0 0 0 0

EthnicityAfrican-American 42 0 16 6Hispanic 3 17 2 0White 26 0 13 2Other 4 1 2 0Missing 3 0 0 0

Age10's 2 INA 0 820's 9 5 030's 24 12 040's 25 12 050's 10 4 060's and older 2 0 0Missing 6 0 0

Marital statusMarried 47 INA 20 0Not married 25 13 8Missing 6 0 0

Employment statusEmployed full-time 39 INA 11 0Employed part-time 10 5 0Not employed 21 6 0Full-time student 2 0 0Missing 6 1 8

Highest level of educationcompleted

No high school diploma 6 INA 2 8High school graduate or GED 15 8 0Some college, or college degree 51 22 0Missing 6 1 0

Relationship wvith the childBiological parent 51 18 32 N/AFoster parent 3 0 0Adoptive parent 5 0 0Other family member 6 0 0Missing 13 0 1

IncomeLowv (annual income < $25,000) 17 INA 12 8Moderate 24 14 0High (> $50,000) 18 6 0Missing 19 1 0

Community sizeMetro/urban 49 INA 22 0Small city/Town 6 8 8Rural area 7 2 0Missing 16 1 0


TABLE 1-(Continued)

Families of Families wlho useChildren with English as a Families of Children Individuals withDisabilities Second Language Without Disabilities Disabilities

Variable (n = 78) (n = 18) (n = 33) (n = 8)

Age range of the child wvith adisability

Birth to 5 17 INA N/A 05-13 20 013-21 21 8Over 21 3 0Missing 17 0

Disability severity of the child with adisability

Mild 6 INA N/A 4Moderate 33 4Severe/very severe 26 0Missing 13 0

Note. INA = information not available.

and assisted us in arranging for interpreters.Demographic summaries for the individual in-terviewvs are in Tables 1 and 2.

We also interviewed three siblings of indi-viduals with disabilities in Kansas City. We in-terviewed them rather than conducting a fo-cus group because the PAR advisor suggestedthat she thought interviews would be more

TABLE 2

Participant Demographics: Professionals (n = 50)

Variable n

GenderFemale 46Male 4

EthnicityAfrican-American 5Hispanic 2White 43Other 0

RoleAdministrator 17Service provider 33

Working fieldEducation 19Human/social services 21Health care 8Combination 2

comfortable for them. Sibling demographicsare included in the summary in Table 1.

Data Collection

Focus groups. We used a semi-structured in-terview guide to provide general direction forthe focus group discussion. We used the fol-lowing grand tour questions with families:

When you hear the words 'family quality oflife," what first comes to your mind?

Tell us about times when things have gonereally well in your family. What helps thingsgo well?

Tell us about times that have been espe-cially tough in your family. What are thethings that usually create tough times?

We asked service providers and administra-tors about quality of life within their own fam-ilies, as well as questions about their perspec-tives on factors that contribute to a goodquality of life for the families to whom theyprovide services.

Most focus groups were comprised of 6-12participants. We conducted focus groups intwo rounds with the second round being held3-4 months after the first round. Each focusgroup lasted approximately 112 hours. At theconclusion of the focus groups, the moderator


conducted an early member check by summa-rizing major points and soliciting feedback.All focus groups were recorded and tran-scribed.

Individual interviews. Nine graduate stu-dents conducted the individual interviewvswith families for whom English is not theirprimary language. The students followed sim-ilar procedures in the individual interviews asalready described for focus groups regardinggeneral sequence of questions, tape-record-ing, and transcription.

Data Analysis

We used the constant comparative method ofanalyzing focus group and interview data to(a) generate categories, subcategories, andcodes; (b) interpret patterns and themes; and(c) ensure rigor (Glaser & Strauss, 1967; Lin-coln, 1995; Lincoln & Guba, 1985).

Generating Categories, Subcategm-ies, and Codes

Initially, six members of our research teamread two focus group transcripts (represent-ing different types of groups and researchsites) to identify text segments that appearedpertinent to the research questions. We met inpairs and discussed initial perspectives onemerging categories. We repeated this processwith four more sets of transcripts and formal-ized the categories into an initial codebook.We continued to read transcripts until all tran-scripts had been analyzed according to cate-gories and the codebook had been revisedseven more times. All six researchers agreedthat the 90 codes in version 11 of the code-book had a clear operational definition andrepresented a comprehensive categorizationsystem. Disagreements among members of theteam were resolved through discussion andconsensus building; thus, the goal was to de-velop a credible and inclusive taxonomy rep-resenting a synthesis of all members of theresearch team (Lincoln, 1995).

Interpreting Patterns and Themes

Thirty-five transcripts from focus groups and30 transcripts from interviews resulted in ap-proximately 1,900 single-spaced pages of tran-scripts. We placed all of these transcripts into

Ethnograph (5. 0), a software program that sortsdata by categories. Based on the 11th versionof the codebook, we used Etinograph to sort allcoded segments and provide printouts of allsegments for each code. Through this processof constantly and continuously comparingcodes, the research team sorted the data into10 domains and 139 indicators of family qual-ity of life. This sort formed the basis for the12th version of the codebook.

Four members of the research team usedthe 12th and final version of the codebook torecode all 65 focus group and individual in-terview transcripts. A fifth member of the re-search team checked 30% of the transcripts toensure coding completeness and accuracy.

Although this data analysis process is de-scribed in somewvhat of a linear process, theprocess of developing and refining codes andthen coding and recoding transcripts oc-curred in a non-linear fashion (Erlandson eta]., 1993). The entire process was spreadacross 16 months.

Ensuring Rigor

We ensured rigor through incorporation ofprocedures to address credibility, transferabil-ity, and dependability (Lincoln, 1995; Lincoln& Guba, 1985). We used three techniques foraddressing credibility (accuracy of informa-tion) (a) triangulation of data, (b) peer de-briefing, and (c) member checking (Erland-son et al., 1993; Lincoln & Guba).

We triangulated data (i.e., the synthesis ofmultiple sources with the same information)by gathering information (a) from multiplesources (e.g., families of children and youthwith and without disabilities, service providers,and administrators), (b) from multiple loca-tions (e.g., Kansas City, New Orleans, andGranville County) and (c) using multiple re-searchers to collect and analyze data. We in-corporated peer debriefing (i.e., invitingpeers who are not immersed in the research toreflect and provide feedback on methods andfindings) by involving PAR committee mem-bers, other research colleagues at the samesetting as the researchers, and family leaders.Finally, we used member checking (a) at theend of each focus group (as previously de-scribed), (b) at the beginning of the secondround of focus groups (sharing a synthesis


from the first round), and (c) by a formalmember check conducted at the end of dataanalysis.

The formal member check included send-

ing an execufive summary of the results and aresponse form to 65 focus group participants.We received a 38% response rate. All re-sponses confirmed the credibility of the sum-mary; three participants provided commentsfor improving the focus group process (e.g.,too much time lapsing between the first andsecond rounds of the focus groups; focusgroup location was too crowded).

Although transferability is not a crucial is-sue for qualitative studies (Maxwell, 1996), wewere intentional in seeking to enhance trans-ferability by including (a) different geo-graphic locations to expand the diversity ofthe sample and (b) diverse participants wvith awvide variety of characteristics (e.g., families ofchildren and youth with and without disabili-ties representing different ages and types ofdisabilities).

Dependability addresses the extent to whichthe research process is consistent across re-searchers. The research team included 16people (five assumed primary responsibility)over tvo years. Using multiple researchershelped ensure that the data were not weightedto reflect any one researcher's perspective(Brotherson & Goldstein, 1992). The researchteam extensively discussed their agreementsand disagreements in working to achieve con-sensus on categories, subcategories, codes, do-mains, and indicators. As a research team, weaccounted for all changes in the research pro-cess and all decisions related to coding bydeveloping an audit trail involving five types ofinformation: (a) raw data (e.g., interviewguides, audiotapes), (b) data reduction andanalysis products (e.g., Ethnographic printouts,peer debriefing notes), (c) data reconstruc-tion and synthesis products (e.g., codebooks,final report), (d) process notes (e.g., decisiondiary, methodological notes), and (e) prod-ucts describing intentions and dispositions(e.g., proposal, personal notes).

Limitations of the Study

Our broad research questions focused on abeginning conceptualization of family qualityof life. We believe it was entirely appropriate

to use qualitative inquiry given the explor-atory nature of research on family quality oflife. Given the nature of qualitative inquiry, wecaution against broad generalizations of these

findings to all families-those wYith and wyith-out children with disabilities.

The major limitation in terms of describingthe impact of spirituality on family quality oflife is that we did not include participantsfrom a wide range of spiritual and religiousbackgrounds. We did not recruit participantsaccording to diverse spiritual backgrounds,nor did we ask participants to indicate theirspiritual or religious affiliations in the demo-graphic section. It is clear from commentsthat most of the participants were Christian.Had we recruited a more diverse sample, wemight have a wider variety of comments andthemes concerning spiritual and religious be-liefs and practices.

Results

Themes resulting from participants' com-ments were organized into 10 domains of fam-ily quality of life (Poston et al., 2003). Thesedomains (advocacy, daily family life, emo-tional well-being, family interaction, financialwell-being, health, physical environment, pro-ductivity, parenting, and social well-being) en-compass the entirety of family quality of lifeand are described in detail elsewhere (Postonet al.,). The focus of this article, however, is onthemes related to respondents' perspectiveson spirituality, specifically faith and participat-ing in religious communities.

Due to the importance of spirituality andreligion to families, as evidenced by the num-ber and intensity of comments, spiritual wellbeing was originally a separate domain. How-ever, based on input from our PAR commit-tee, spirituality was encompassed into emo-tional well being. PAR Committee membersfelt that the presence of and specific form ofspiritual and religious beliefs of family mem-bers should be private and that any familyquality of life model should recognize spiritu-ality, and provide spiritually appropriate sup-ports, but not get into specific belief systems.Although we did not intend to advance a spe-cific spiritual belief system, the presence ofspirituality as a domain seemed to indicatethat we were advocating for a specifically spir-


itual component to family quality of life. It wasthought that this might be a concern or beoff-putting to some families who did not havea spiritual belief system.

Participant comments concerning spiritual-ity generally fell into twvo main categories: (a)having spiritual beliefs and (b) participatingin religious communities.

Having Spiritual Beliefs

Many participants spoke very passionatelyabout their spiritual beliefs as a contributor totheir emotional and overall family quality oflife. Although spirituality may encompassmany beliefs and practices that are not tieddirectly to a specific religion (Canda, 1999),most of the participants spoke specificallyabout spiritual and religious beliefs as prac-ticed in Christian churches. Their commentscan be categorized into three areas: (a) havingfaith, (b) using prayer, and (c) attributingmeaning to disability.

HavingFaith

Participants in all groups, but mostly parents,spoke about the importance of having faith orbelieving in something greater than them-selves. They indicated that their faith gavethem strength and helped them make sense ofthe events in their lives.

The most important things in my life? MyGod. I think without God I don't think anyof us, if you don't believe that there's some-thing higher than you, I don't think we canmake iL

For most participants, their faith ties directlyto a reliance on God. Many parents looked toGod for help in their lives. They indicatedthey relied on God to help remove barriersand to show them the direction they shouldtake. They asked God for strength, patience,and inner peace.

I have to have at least a strong faith in Godso that I can get to the inner peace, and the

happiness, and the good environment.In addition to asking God for what theyneeded, participants credited God for goodthings in their lives.

That means when you get up in the morn-ing you thank God for Him opening youreyes and making you able to stand on yourown twvo. And you take the rest of the day,and you fill it with everything that you canget into iL I mean, you don't have no timeto waste.

Using Prayer

Participants talked about using prayer as a wayto communicate wvith God and to access theirfaith.

Mine is prayer. I believe through prayerthings are answered. And my faith and mybelief in God, all things are answered. Allthings are possible. For me, I feel that I doit (pray) all the time, I pray before I go toschool to give me the strength and patienceand all the deal. Once I pray, I feel thepeace. And once I'm at peace, I'm fine. Ican do what I need to do.

Some parents talked about when theyprayed. This particular family incorporatedprayer into a daily routine by praying at theevening meal:

At home, when we can all sit down and havedinner together that's when we pray. We allpray at our dinner table. That's when all ofus are quieL And everybody's calm, andthat's when we have prayer.

Attributing Meaning to Disability

For many families of children wvith disability,faith and prayer took on an additional role.About half of the families who shared perspec-tives on their spiritual life spoke about howthey used their faith as a way to make somesense of having a child with a disability. Formany, they viewed their child as a gift fromGod. This gift wvas viewed either as a blessingor as a test of their faith.

I have to say for all parents that have kidswith disabilities, or exceptionalities, I thinkyou have to look at that as a gift from God,

as a blessing, as a test of your faith. If youhave faith, it's going to work ouL

Some participants might have viewed theirchild as God's punishment for some perceived


failure on their part, but they did not expressthis view explicitly.

Participating in Religious Communities

Participants spoke about issues connectedwith participating in religious communities.Generally the comments related to being ableto go to meetings or activities sponsored bythe religious communities and having connec-tions and relationships with others within thereligious community. Several respondentsspoke about how their child was accepted intoall facets of the religious community. Theydescribed their church as a place of accep-tance and unconditional love. One motherrelated how her sonjoined,the choir and sangin church; a father described the joy hisdaughter finds in the music at church:

Church experience is just wonderful. Imean, it just take over. I don't know. Imean, once you walk through the door,that's it. And well, she love music, so, that'sit. Once she walks in the door she can justabout do anything she want to do. She canwalk in, she sit on the front, you know,everybody knoNvs where she sits. She goesstraight to the front, she can sit on theorgan. She doesn't touch the keys or noth-ing. But she just sit there, long as the or-gan's playing, she sitting there. She gets uponce it stops and get up and go and sitdown. And, you know, that's the most, bestplace I think she's not being, notjust toler-ated.

About the same number of participants in-dicated the difficulty they faced when theywanted to attend church activities. Some fam-ilies felt that their children were not acceptedor that they did not have the support to par-ticipate fully. One mother comments:

There's a lot of people (in the church) thatdon't knowv howv to deal with your autisticchild. And I hate to say it, and I have a lot of

work to do, but I will have to showv themhow to really get religious.

Discussion

Results described in the previous section arediscussed in this section in terms of (a) impact

of spirituality and religion on family quality oflife, (b) implications and actions, and (c) re-sources.

Impact of Spirituality and Religion on FamilyQuality of Life

As evidenced in participants' comments, spir-ituality and religion play a major role in manyof their lives. Participants' comments echoedthe themes found in the literature; theyturned to their spirituality and faith to findmeaning and purpose in life and theyjoinedreligious communities as a way to share anddevelop their spirituality with others. Most ofthe comments reflected a sense of strengthgained from spiritual well being and partici-pation in religious activities. Spiritual develop-ment impacts many other areas offamily qual-ity of life. Strength gained from faith andthese activities provides a resource that en-ables family members to meet the challengesthey face in everyday life. Challenges fromother aspects of life (e.g., financial, health,emotional, social or daily life) can be amelio-rated by the strength and sense of well beinggained through religious beliefs and socialsupport from members of their religious com-munity.

Families who choose to incorporate spiritu-ality and religion into their individual andfamily life want to turn to religious institutionsfor information and supporL Religious lead-ers, in turn, need someone to go to for theirinformation, training, and support as they de-velop a comprehensive ministry that is respon-sive to the needs of children with disabilitiesand their families.

It is clear that there are many families whowould probably choose to attend their localchurch, temple, synagogue or mosque if theirchildren had the appropriate supports. With-out the appropriate supports, parents are ei-ther reluctant to attend or are unable to ben-efit from attendance because they spend theirtime providing direct support to their chil-

dren wvith disabilities, Based on the families'comments in this research, we suggest thatfamilies are looking for three things fromtheir religious community: (a) acceptance oftheir child, (b) spiritual and emotional sup-port for themselves, and (c) supports for theirchild during services so that both their child


�M_ E__ M_ M_

and themselves can have meaningful partici-pation in religious activities.

Implications and Actions

Based on a review of the literature and themesheard from families in this research, we pro-pose a series of implications and suggestionsfor action steps that can be taken by (a) fam-ilies, (b) religious organizations, and (c)schools and disability organizations. Althoughparticipants focused specifically on religiousactivities, many of these implications and ac-tions are valid for any spiritual practice as wellas religious practice.

provide supports for families in need. If afamily doesn't feel they have the resources ittakes to seek information, perhaps a closefriend, family member or educator can be anintermediary with religious leaders to set upappropriate counseling or other supports.

Reaclhing out to disability organizations. If afamily has the commitment for support fromreligious organizations, but needs informa-tion and training to make that commitment areality, then they can ask for the expertise ofcommunity disability organizations (e.g., TheArc, Autism Resource Center, school teacher).Often, disability organizations are more thanvilling to provide this type of information andtraining; theyjust need to be asked.

Families

Families who vant support to enhance theirspiritual well-being or to participate in theirreligious community can take several steps tomake their desires and priorities known topeople who can support them. We suggestthree concrete steps that family members cantake that might be helpful: (a) set aside timefor spiritual or religious practice, (b) ask forsupport from their religious community, and(c) ask for support from their community dis-ability organization or child's school.

Setting aside time for spiritual or religious prac-

lice. Like other activities, prayer, spiritualreading, meditation, or attending communityreligious activities take dedicated time andeffort. It might be helpful to set aside timeevery day or every week to devote to spiritualor religious practice. Family members whowant to make this a priority in their lives mightwant to ask other family members or extendedfamily for help wvith child care or schedulerespite care so that they can devote their at-tention for that short time period to their

spiritual or religious pracfice rather than car-ing for children and all the other tasks thatusually ovenvhelm them.

Reachling out to religious communities. Some-times it is difficult to share personal and fam-ily challenges with others, no matter how un-derstanding they might be. Although it mightbe difficult at first, families who want assis-tance in developing their spiritual lives mayneed to ask for iL Religious leaders are thereto help congregants and often there are spe-cific support groups or ministries that can

Religious Organizations

How can religious organizations and commu-nities provide the type of support that chil-dren with disabilities and their families want?One church provides supports for childrenwith disabilities and their families through alay ministry program called Mathew's minis-tries, named after a young boy with disabili-ties. This congregation provides an exampleof how church members can effectively pro-vide supports so that children with disabilitiesand their families can fully participate in the

spiritual and social life of the church.Mathew's Ministry has the mission of sup-

porting, empowering and enabling peoplevith disabilities and their families to grow intheir faith and to contribute their gifts andtalents within the Christian community. Theministry's "angel care team" consists of volun-teers who are screened and trained to providesupports to children wvith disabilities wvithinthe context of church activities or individuallyas necessary. Parents and veteran angel care

team volunteers conduct training. Mathev'sMinistries also sponsors parents' night out forparents of children wvith disabilities. Congre-gation teams (e.g., Sunday school classes,youth groups) volunteer to provide supportsfor the children so that the parents can enjoyan evening out or spend time with their otherchildren. Families of children with disabilitiesin turn sponsor other congregational minis-tries such as the annual food drive or performduties with their children as greeters at wor-ship services. The church employs one staff


i

person 10 hours a week for administrativesupport and is celebrating its tenth year ofproviding support to children with disabilitiesand their families.

Many religious organizations have a health-related ministry whereby congregants, wvho are

also health care professionals, provide infor-mation and support to other congregants onhealth and wellness issues (e.g., see website athttp://wvww.stpeterlutheranchurchofhallettsville.org/ministries.htm). This health-related min-istry might also include educators and focuson disability awareness and issues in additionto health.

Religious leaders can turn to several com-munity resources. Local disability agencies,chapters of The Arc or other disability orga-nizations usually have a community outreachprogram that provides information and aware-

ness on general disabilit issues. These organizations may also be able to provide supportto religious staff as they support specific chil-dren with disabilities. Oftentimes, the parentsof children wvith disabilities are more thanwilling to share information about their child.Religious leaders can ask if parents would bewvilling to share information with the congre-gation at large or with specific people (e.g.,teachers, nursery staff) who will be workingwith their children. Educators may be able toshare some information on topics such asadapting curriculum, positive behavior sup-port and social skills.

Many churches have a ministry called Ste-phen's Ministries or something similar thatprovides outreach and counseling to churchmembers during times of crises (see web-site http://www.stephenministries.org). Reli-gious leaders can ensure that Stephen's Minis-ters have awareness about disability issues andare specifically trained to counsel families ofchildren with disabilities.

communications supports that would enablestudents to participate in their religious com-munity in a meaningful way. Although schoolstaff are usually already stretched to the limitand may not be able to provide individualtraining and support to religious staff, a part-

nership can be formed that wvould benefitboth school and religious staff. Such a part-nership might include inviting religious orga-nization staff to professional development, of-fering to trade time or areas of expertise (e.g.,religious staff volunteer at school in return forhelp with universal design of the curriculum),or a religious organization offering to helpsponsor school functions.

Community disability agencies can specifi-cally hire staff who are willing to work withreligious organizations and to provide supportfor individuals within a religious activity. Withappropriate respite care, families can chooseto attend services without their member with adisability, or perhaps more importantly allfamily members can attend together. As partof the community outreach, these organiza-tions can form a team of spiritually sensitivetrainers and coordinators who work with localreligious organizations to facilitate inclusionand support for people with disabilities andtheir families in local religious programs.

Spiritual and religious beliefs impact thewvay families view disability and education. Pro-fessionals and direct support staff need to beaware of and sensitive to families' religiousand spiritual belief systems and how they im-pact their view of disability (Zhang, 2001).Disability organizations can include spiritual-ity and religious awareness into their profes-sional development programs. Service coordi-nators and case managers can seek trainingand information on providing spiritually sen-sitive supports to individuals and families.

ResourcesSchools and Disability Organizations

School staff can be aware of students' andfamilies' religious preferences and priorities.The IEP can include goals that will enhance astudent's and family's ability to participate intheir religious community. School staff arefrequently the most competent and experi-enced people in the area of positive behaviorsupport, universal design for learning, and

There are currently several resources that fam-ilies, religious organizations, disability organi-zations, and schools can access to assist themin enhancing supports for religious and spiri-tual activities for families. There are websites,books, journals and organizations dedicatedto supporting spiritual activities for peoplewith disabilities and their families. Some ofthese resources are described in Table 3. Per-


TABLE 3

Resources for Enhancing Religious Supports and Participation

Resource Website or Contact Information Description

American Association onMental RetardationDivision on Religionand Spirituality website

Quality Mall 'Religionand Spirituality Store"

Newsletter from IMPACTentitled Feature Issueon Faith Communitiesand Persons withDevelopmentalDisabilities

On the Road toCongregationalInclusion: Dimensionsof Faith andCongregationalMinistries with Personswith DevelopmentalDisabilities and TheirFamilies

United MethodistChurch of theResurrection,Leawood, KS

Faith in Action: AUnitarian UniversalistDepartment forDiversity andjJusticeWebsite

www.aamr.org (main page)http://www.aamr.org/Groups/div/RG/index.html (Divisionon Religion and Spirituality)

http://www.qualitymall.org/directory/FM Pro?-DB=qmdepts&-Lay=depts&-format= departmentLl.html&-RecID=l00&-lFid

http://ici.umn.edu/products/impact/143/defaull.html

To order, send check for $15payable to "The Boggs Center-UAP" to Bill Gaventa at TheBoggs Center-UAP, P.O. Box2688, New Brunswick, NJ08903 Five or more copies: $10per copy and $10 for shippingand handling. Phone: 732-235-9304, Fax: 732-235-9330, [email protected]%v

http://www.cor.org/devsite/images/matthew_min/matthews_ministries.html

http://www.uua.org/faithinaction/jtwacc/accessl.html

This website provides membership andcontact information for the Religion andSpirituality Division of AAMR It alsoprovides guidelines for certification ofpastoral and lay ministers who supportpeople with mental retardation.

This website contains information onproducts and programs for exploring andsupporting the spiritual and religiouspreferences of individuals withdevelopmental disabilities and theirfamilies. There will also be informationand resources for support providers,congregations, and service organizations.

A feature issue of Impact, the newsletterfrom Institute on Community Integration,that is fully devoted to faith communitiesand persons wvith developmentaldisabilities. This 36-page resource hastheme articles, stories, resources, models,and more. To order (first copy is free)contact the Institute on CommunityIntegration, University of Minnesota, 109Pattee Hall, 150 Pillsbury Drive, SE,Minneapolis, MN 55455, 612-624-4512 orsee website.

A 125 pp. bibliography and address listing ofresources for clergy, laypersons, families,and service providers. The resources arefrom religious and non-religiousorganizations, but ones selected because oftheir potential usefulness for peopleworking on inclusive ministries andcongregational supports. It is divided byareas of congregational life, for example,worship, religious education, families,youth groups, outreach, theological andscriptural issues, audiovisuals, etc.

This website contains the mission and visionfor Mathew's Ministries of the UnitedMethodist Church of the Resurrection, thechurch described in this article.

This website contains suggestions to helpcongregations become more welcoming topeople with disabilities. This is a website ofthe Unitarian Universalist faith, butapplicable to other congregations.

haps the organization most devoted to thespiritual lives of people with disabilities andtheir families is the Religion and Spirituality

Division of the American Association on Men-tal Retardation. Their resources and websiteare included in the table.


Conclusion

Spirituality and religion play important rolesin the lives of families of children wvith disabil-ities. Religious practice often brings meaning,solace and strength during difficult times. Itcan also bring friendship, and emotional andpractical support through religious communi-ties and organizations. Families of childrenvith disabilities may need supports to be ableto benefit from religious practice and activi-ties. Religious and community disability orga-nizations can step up and fill the need forsupports. It doesn't take a lot of time ormoney, just avareness and a wvillingness toreach OUL

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Received: 29 January 2003Initial Acceptance: 18 March 2003Final Acceptance: 20 July 2003

1 08 / Education and Training in Developmental Disabilities-June 2004

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TITLE: Role of Spirituality and Religion in Family Quality ofLife for Families of Children with Disabilities

SOURCE: Educ Train Dev Disabil 39 no2 Je 2004WN: 0415708151002

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