Adaptability and cohesion of Greek families: Raising a ... · Adaptability and cohesion of Greek families: Raising a child with a severe disability on the island of Rhodes very close

Copyright © eContent Management Pty IAÁ. fournal of Family Studies (2009) 15: 245-259.

Adaptability and cohesion of Greekfamilies: Raising a child with a severe

disability on the island of Rhodes

AssiMiNA TSIBIDAKI*Lecturer, Special Educator, Department of Primary Education, University of the Aegean, Rhodes,Greece

ANASTASIA TSAMPARLIAssociate Professor, Clinical Psychologist, Department of Primary Education, University of theAegean, Rhodes, Greece

ABSTRACTThe target of the study is to compare the adaptability and cohesion between 30 Greek families rais-ing a child with a severe disability and 30 families with children without disability. This studyconstitutes a qualitative survey with quantitative comparative elements. Data were collected usingthe Family Adaptability and Cohesion Evaluation Scale (FACES-III) (Olson 1986) and semi-structured interviews. The findings suggest that there is no statistically significant differencebetween parents of both research groups on the cohesion, adaptability dimensions of family fimc-tioning, on family type and in how they wish their family functioning within the categories of thesetwo dimensions. Both groups of parents estimate and wish their family to function in the 'healthyzone' according to the revised edition of the Olson Circumplex Model (Olson 1991).

Keywords: adaptability; cohesion; disability; family functioning; periphery

Research on family therapy proposes two basic ized by alluding to the two concepts at the extremes

dimensions in family functioning: the senti- of enmeshment and disengagement (Olson, Russellwewiiî/coAwzo«, which refers to whether the mem- & Sprenkle 1980; Seligman &c Darling 2007).bers of the family feel isolated or close to their Enmeshment dsiá disengagement dse.hot\\M.\n\\ch\nsfamily, and the adaptability to changes (Olson terms. Enmeshment refers to the loss of autonomy1993). Effective functioning of a family can be due to a blurring of interpersonal boundaries. Dis-facilitated or, on the contrary, be prevented depend- engagement is the psychological isolation thating on its level of cohesion and adaptability (Min- results from overly rigid boundaries around individ-uchin, Rosman & Baker 1978). Adaptability refers uals and subsystems in a fiimily (Nichols & Schartz,to the family's ability to change in response to a 1998). The effective function of a family systemstressful situation. Cohesion can be best character- needs both the element of stability as well as the

Correspondence to Assimina Tsibidaki, Department of Primary Education, School of Humanities Studies, University ofthe Aegean, 1 Dimokratias Street, Rhodes 85100, Creece. Tel: +30 6 937688018; Fax: +30 22 41062532; email:[email protected].

Volume 15, Issue 3, December 2009 JOURNAL OF FAMILY STUDIES 2 4 5

Assimina Tsibidaki and Anastasia Tsamparli

element of change in order to balance harmonious-ly (Olson, Russell & Sprenkle 1980).

Research continues, but given our present state ofknowledge, it may be misleading to draw firm con-clusions about a familys interactions and function,especially about families who are raising a child witha disability. The presence of a child with a disabilitymay impose multiple and profound effects on afamily (Boyce &C Barnett 1993; Seligman & Darling2007) and is often considered a major stress factorin the family life (Mandleco et al 2003). Reviews ofresearch on families and disability (Seligman & Dar-ling 2007) or chronic illness (Knafl & Gilliss 2002)present a mixed picture of the findings concerningthe impact of disability or illness on family life. Inearlier research, it was assumed that such an eventprobably resulted in family dysfunction (Cornman1993, cited in Knafl & Gilliss 2002: 185; Labbe1996). Research (prior to the 1980s) generallyassumed family dysfunction and pathological reac-tions were an inevitable result of having a child withan intellectual disability (e.g. Byrne &C Cunningham1985; Crnic, Friedrich & Greenberg 1983; Behr1990, cited in Stainton & Besser 1998: 57).Numerous studies highlight negative aspects in thefunctioning of families with a child with disability.These aspects are: the familys low self-esteem, bur-dening the familys emotional resources and copingstrategies, interrupting the normal routine of thefamily and depriving personal growth opportunities(e.g. Beckman 1983, Byrne &C Cunningham 1985,Ditchfield 1992, Hadadian 1994, Hanline 1991,Mallow & Bechtel 1999, McLinden 1990 and Mar-galit & Ankonina 1991, cited in Wai-Ping Li-Tsang,Kwai-Sang Yau oi Yuen 2001: 61).

Early intervention programs adopted a patholog-ical approach in working with these families (Ray &Ritchie 1993; Singer & Irvin 1990, cited in Man-dleco et al 2003: 366; Trivette et al 1990). However,alternative views propose that most families endurestressful events reasonably well (Hoddapp 1995,cited in Mandleco et al 2003: 366), and manyadapt successfully (Bennett, DeLuca & Allen 1996;Seligman & Darling 2007; Tsibidaki 2007). Severalstudies at an international level have suggested that

families raising children with a disability may func-tion effectively though they experience exceptionallydifficult situations (Beavers & Hampson 1990;Dale 1996; Rehm Si Gatanzaro 1998, cited inKnafl Sc Gilliss 2002: 185; Seligman &C Darling2007). This has been found to be true in Greecealso (Antzakli 2003; Tsibidaki 2007). Additionally,there is a growing body of evidence that families ofchildren with a disability do not differ in familyfunctioning from families of children without dis-ability (Dyson 1997; Magill-Evans et al 2001).Moreover, it has been argued inquiringly that fami-lies raising a child with a disability do not differfrom families without the condition of disability, asfar as their operation in their daily tasks is con-cerned (Ehrmann, Aeschleman & Svanum 1995).

Families raising a child with disability who seemto cope very effectively are those who presentgreater resilience in the face of adversity and crisesand have a higher ability to handle stressful experi-ences. According to current literature, 'protectivefactors' are those which have been associated withlower levels of stress and higher satisfaction in thelife of parents raising children with disabilities,although there are some differences between moth-ers and fathers (Dale 1996). These include: a) acohesive, adaptable family system, including opencommunication between the parents and harmonyin parenting; b) a practical coping style; c) satisfac-tion with the marital relationship; d) a supportivesocial network: friendships with other parents ofchildren with disability; e) utilitarian resources; f)positive outlook; g) problem-solving skills for tack-ling problems; h) health and energy of individualfamily members; and i) few unmet needs for helpfrom services (Dale 1996; Sloper & Turner 1993).

One hardly needs to mention the crucial role thecultural context plays in family functioning (Olson,McGubbin et al 1985). In the Greek culture, familyhas an important place in the community. Research(Georgas 1999, 2000) has documented thatalthough the Greek family is seemingly a nuclearfamily, in reality, it functions as an extended one.That is, while the members live separately fromtheir families of origin, they choose to live within

2 4 6 JOURNAL OF FAMILY STUDIES Volume 15, Issue 3, December 2009

Adaptability and cohesion of Greek families: Raising a child with a severe disability on the island of Rhodes

very close proximity to their parents and communi-cate many times daily with them. Bonds are verystrong, ancestors are respected and are taken care ofby their children when in need at an old age. Col-lective values prevail, so problems are common andare expected to be solved not individually but by thewhole family. This type of family has been called'extended urban family' (Georgas 2000). Adoles-cents, on one hand, reject values associated with thepatriarchal, rural family (a domineering father and apassive mother), but on the other hand, they believein values associated with collectivity, the obligationsof parents towards their children and of the childrentowards both their parents and ancestors. Althoughin the process of Europeanization and Globaliza-tion, Greece still remains a profoundly religiousChristian Orthodox country full of beliefs, tradi-tions, customs and religious feasts (Greeka.com2007) that support the institution of family. Itseems that the Greek family changes in its own way.

While some research findings relate to Greekfamilies, there has been limited research on familyfunctioning in families raising a child with a severedisability. In Greece, the current legislation aims tocreate y4 School for All iinà supports a negotiatingmodel of work with families of children with dis-ability. Negotiation is a key transaction in thework between professionals and families but, atpresent, is at a very primary stage. What prevails inpractice is the traditional way that adopts a patho-logical model of these families; according to thismodel, the professional is the 'expert', while therole of parents is limited to that of providing infor-mation (when requested by the professional) andcomplying with professional advice and treatment(Tsibidaki 2007). Only recently (after the year2000), research has shown that the Greek familywith a child with disability can function effectively,and family members can be seen as equal andimportant partners in working with a child withdisability (Antzakli 2003; Tsibidaki 2007).

The present studyOur aim was to examine how families who raise achild with a severe disability function in a special

and different cultural context: the island of Rhodes,which belongs to the periphery of SouthernAegean. Peripheries are administrative subdivisionsof Greece. There are 13 peripheries (9 in the conti-nental region of the country and 4 on the islands).Each periphery has budgetary independence and itsstructure does not depend on the Ministries(Nation Master, 2003). However, in Rhodes (anisland whose financial resources come mainly fromtourism) there is a lack of supporting social struc-tures and the existence of discriminatory practiceshas many negative consequences for the familieswho raise children with disability. One such conse-quence is that the consistency of family life isaffected, because some of the family members (usu-ally one or both parents) have to travel to the capi-tal (Athens) or to another big city to take the childto the doctors or to a specialist. This means that therest of the family stays behind, sometimes for longperiods of time. Another consequence is the finan-cial burden imposed on these families, especiallythe poor ones. The result of such discriminatorypractices for these families is that they can notafford any support. As a result, families turn totheir coping strategies and to their own strengthsaiming to cope with their daily needs.

The following questions were designed tomeet the objectives of the research:• What kind of family functioning and organiza-

tion characterizes Greek families on the islandof Rhodes, who raise a child with a severe dis-ability?

• How do these parents of children describetheir family's cohesion, adaptability and type,and how do they wish their family to be onthese dimensions?

• Are there any differences in cohesion, adapt-ability and family type in families raising achild with disability or a child who does nothave a disability?

The lack of research on families living on theperipheries of Greece, and the existence of con-flicting research findings in general, suggest that itis important to identify differences in the func-



tioning and organization between families with orwithout a child with disability. In addition, weconsider our stated research parameters important,because they have not been sufficiently answeredby existing research on the Greek population. Thehypothesis of the study is the following: given thelack of governmental support networks, especiallyin the periphery of Greece (Tsibidaki & Tsamparli2007), Greek families raising a child with a severedisability turn to their extended family for sup-port. That these families present high levels ofcohesion in their functioning and adapt to thecondition of the child's disability may beexplained by this additional support.

METHOD

Sample

Research participants were 60 nuclear families, 30families with a child with a severe disabilit)^ and 30with children without a disability (control group).The total number of research participants was 120parents. All families were 'nuclear' and intact. Bothresearch groups are matched on the type of family.As we have already mentioned the Greek nuclearfamily (and the families of the study) functions asan 'urban extended family', that is, their function-ing presents characteristics of both nuclear andextended family. It was the first marriage of par-ents, and all families had children of school age.All were of a middle socio-economic class. Thiswas based on information derived from the par-ents' occupation and income. The range of fami-lies' monthly income was: from 1800€-3000€{M= 2430€ and median = 2640€) for familieswith a child with disability and from 1900€ to3000€ {M = 2200€ and median = 2450€) forfamilies of children without a disability. Accordingto the General Secretariat of National StatisticalService of Greece (2009), the middle socioeco-nomic class of Greeks is between 1800€-3000€.All the fathers were employed (100%). Moremothers of a child with disability (63.33%) wereunemployed compared with mothers of childrenwithout a disability (33.33%). It must be under-

lined that most mothers (73.68%) raising a childwith a disability decided to stop working in orderto stay at home and take care of the child with thedisability. Table 1 shows the demographic charac-teristics of parents related to education and occu-pation. The educational characteristics of theparticipants are representative of the Greek popu-lation (according to General Secretariat of Nation-al Statistical Service of Greece, 33.44% havefinished the Lyceum). Moreover, all participantswere permanent residents of the island of Rhodes,Greece. The families reside in 9 municipalities ofRhodes and the frequencies of residence of familiesare the same for both groups. The average age ofthe men was 39 years (SD = 5.91) and of thewomen was 37 years {SD = 6.57).

The total number of children with disabilitywas 30 (15 boys and 15 girls). Age range: 4-12years {M = 8.07, SD = 3.02). The types of disabil-ities were the following: mental retardation(severe) (50%), cerebral palsy (with the coexis-tence of moderate mental retardation) (33%) andmultiple disabilities (motor and language difficul-ties and severe mental disability) (16.5%). Thecommon characteristic for all children was themental retardation (from moderate to severe). Allthe children of the study were officially diagnosedas presenting, according to the official medicaldiagnosis, a disability which was estimated as'severe'. According to the 'New system of classifi-cation and evaluation of individuals with disabili-ties' in Greece (Institute of Social Protection andSolidarity 2005), 'severe disability' applies to indi-viduals who face serious restrictions in the fulfill-ment of their daily activities, and who also needthe support of a third person for certain activities.

The families were randomly selected. The selec-tion took place in two phases: Firsdy, families rais-ing a child with disability were randomly selectedfrom archives, catalogues of the Association ofGhildren with Disabilities of Dodecanese, and sec-ondly, families with children without disabilitieswere randomly selected from the directory of the11 municipalities of Rhodes. Registration of fami-lies on the above mentioned catalogues is compul-



TABLE 1 : PARENTS

Parents' education

ElementaryHigh schoolLyceumCollegeUniversityParents'occupation

DoctorLawyerCivil employeePrivate employeeFree professionalEducatorUnemployed/household work

DEMOGRAPHICS OF EDUCATION AND WORK

Father of a childwith

N=3C

1

13

11

1

4

21

4

12

10

-

-

disability

1 %

3.33%43.33%

36.66%

3.33%

13.33%

6.66%

3.33%

13.33%

40%

33.33%

-

-

Mother of a childwith (

N=30

56

10

2

7

-

-

2

5

3

1

19

disability

%

16.66%

20%

33.33%

6.66%

23.33%

-

-

6.66%

16.66%

9.99%

3.33%

63.33%

Father of childrenwithout

N=30

1

10

12

1

6

21

6

11

10

-

-

disability

%

3.33%33.33%

40%

3.33%

20%

6.66%

3.33%

20%

36.66%

33.33%

-

—

Mother of childrenwithout disability

N=3C

4

7

12

2

5

-

-

3

9

4

4

10

1 %

13.33%

23.33%40%

6.66%

16.66%

-

-

9.99%

30%

13.33%

13.33%

33.33%

sory. The sample of families raising a child with adisability was composed using the following crite-ria: a) all families were intact, b) the age of thechild with disability was between 7 and 12 years,c) the child lived with his/her family, d) all thefamilies of the sample were permanent residents ofthe periphery (island of Rhodes), and e) the childwas the only individual in the family who present-ed with the disability.

The participant families were at first contactedby phone and then visited at their home. Out ofthe 35 initial calls, only 5 families refused to partici-pate to the research. At the initial visit all parentssigned a consent form. At the completion of theresearch, a summary of the study and a thank-younote for their participation were sent to each family.

Measures, procedure and statisticalanalysisData were collected using the Family Adaptabilityand Cohesion Evaluation Scale (FACES—III)(Olson 1986) and semi-structured interviews.

FACES-IIIFACES-III is an assessment instrument based onthe Circumplex Model of Marital and Family Sys-

tems (Olson, Sprenkle & Russell, 1979, cited inGaughan 1995: 9). This model posits two theoret-ical concepts, family cohesion and family adapt-ability, as the salient components in any familysystem. The Gircumplex Model also includes athird dimension, communication, which is seen asa 'facilitating dimension' through which familiesmove on each of the central dimensions of cohe-sion and adaptability. Communication, however,is not measured on the FAGES-III questionnaire.The two dimensions (cohesion and adaptability)are curvilinear. Dysfunctional families are seen toscore either very high or very low on each dimen-sion, while 'healthy' families tend to have morebalanced profiles. According to the GircumplexModel, three ranges of family functioning can beidentified: balanced (moderately balanced/bal-anced), mid-range and extreme. Balanced familiesscore near the center of each continuum, mid-range families score near the centre of one contin-uum and near the end of the other, and extremefamilies score near the ends of both continua(Gaughan 1995). FAGES-III is a self-report meas-ure of functioning within families (with or with-out a child with a severe disability). It is a 20-item,paper-and-pencil scale, which estimates the real


Assimina Tsihidaki and Anastasia Tsamparli

and ideal type of family functioning. Each itemhas a 5-point response option. FACES-III isdesigned to be given twice. One form asks eachmember to describe the family; the other asks howeach member would like the family to be. Thescale is first completed with the instruction tofamily members to 'Describe your family now';then they are asked to respond to: 'Ideally, howwould you like your family to be?'. The scales havebeen standardized. The items which measureadaptation are: 2, 4, 6, 8, 10, 12, 14, 16, 18, 30(e.g. 'In solving problems, the children's sugges-tions are followed', 'Children have a say in theirimmediate family', 'Different persons act as lead-ers in our family'). The items which measurescohesion are: 1, 3, 5, 7, 9, 11, 13, 15, 17, 19 (e.g.'Family members ask each other for help', 'Weapprove of each other's friends', 'We like to dothings with just our immediate family').

Adaptation and cohesion are classified into dif-ferent categories. There are four levels of familycohesion: connected, separated, very connected/enmeshed or disengaged. There are also four lev-els of family adaptation: very flexible, flexible,structured, rigid or chaotic. This creates 16 possi-ble family systems: four balanced on dimensions,four extreme on both dimensions, and eight onmid-range. A family can be described accordingto the combination of two dimensions' categories(e.g. flexible separated or rigidly disengaged).Established norms indicate that high scores onthe two dimensions refer to balanced types offamilies, moderate scores to mid-range types, andlow scores to extreme types of families. TheEACES-III scale has been translated into Creekby Papageorgiou and Simos and it has been stan-dardized and adapted to Creek by Bibou, Stogian-nidou, Papageorgiou and Kioseoglou (2002, citedin Stalikas, Triliva & Roussi 2002: 385) The reli-ability of internal consistency (Cronbach's a) was.97 for cohesion and .96 for adaptability.

Semi-Structured interviewsParents participated in semi-structured interviewsthat addressed the way they describe and repre-

sent their family's functioning. Individual ratherthan conjoint interviews were conducted toensure that all mothers and fathers had ampleopportunity to express their individual perspec-tives. Interviews were conducted using an inter-view guide that contained questions addressinghow parents describe their family functioning(cohesion and adaptability) and organization.Some of the questions were: 'Couldyou describeyour family', 'Are there times you wish to escape fromyour family?', 'Could you tell me how you spend atypical day?', 'Do you change your daily program?','How are tasks assigned?', 'How do you feel aboutthe way tasks are assigned?', 'How do you spend yourfiee time? Alone or with your family?'.

The statistical analysis of the empirical datawas performed by the SPSS for Windows v. 12.(SPSS Inc 2003). An independent samples f-testcriterion for two independent samples was per-formed on the FACES-III data to test the effectof 'a child with and without severe disability in thefamily functioning.

After parental consent was obtained, threehome visits were arranged (at a time indicated bythe family) for the administration of both instru-ments. All visits took place within a week.FACES-III was administered during the first visitand lasted approximately 20 minutes, while theinterviews took place at the second and third vis-its. The instruments were administered by thesame two researchers. The interviews lastedapproximately 2 hours for each parent and wereadministered during the second and third homevisit. All interviews were tape-recorded, tran-scribed verbatim, and analyzed using the methodof analytic inductive approach of content analysis(Berg 1995). The key phrases were first obtainedby frequency counts from the transcribed scripts.Then, these phrases were collected and formulat-ed into several themes such as: a) basic parame-ters of family functioning and organization, b)adaptability, c) cohesion, d) common characteris-tics of family functioning (among researchgroups), and e) distinguishing characteristics offamily functioning, which are presenting only in



families raising a child with disability. For the

analysis, interviews were divided into four groups

as follows: interviews of mothers (with and with-

out a child with disability) and interviews of

fathers (with and without a child with disability).

Reliability was established by having an inde-

pendent researcher (family therapist) who

reviewed the scripts again and re-evaluated the

themes formulated by the two researchers in

order to make sure of coherency with the scripts

and to identify inconsistencies or omissions.

RESULTSAccording to the quantitative analysis (i-test criteri-

on) of the FACES-III (Tables 2 & 3) there was no

statistically significant difference between parents,

as to how they evaluate and wish their families to

be on cohesion, adaptability and family type.

TABLE 2: How PARENTS ESTIMATE THE REAL FAMILY FUNCTIONING

FACES-III: How parentsestimate the real family

Cohesion

Adaptability

Type of family

Father of a child with disabilityFather of children without disability

Mother of a child with disabilityMother of children without disability





N

3030

3030

3030

3030

3030

3030

M

2.233.07

2.703.10

5.335.60

5.506.03

3.784.33

4.104.57

df

1.5911.964

1.6641.845

2.0062.253

2.3301.938

1.2501.269

1.3161.278

f(58)

i(58)

f{58)

i(58)

f{58)

t(58)

t-test

= -4.84, n.s

= -.964, n.s

= -1.806, n.s

= -1.394, n.s

= -1.691, n.s

= -1.394, n.s

TABLE 3: How PARENTS DESIRE IDEAL FAMILY FUNCTIONING

FACES-IIIthe ideal

Cohesion

: How parents desirefamily functioning


N

3030

M

4.974.57

11

df

.650

.675

i-test

t (58) =-4.84, n.s

Adaptability



3030

3030

3030

3030

6.305.97

6.676.93

7.507.40

5.825.75

1.0881.636

1.5611.639

1.0751.221

1.2701.363

f(57)

t(58) =

t(57)

i{58) =

= .737, n

-1.806,

= .928, n

-1.691,

.s

n.s

.s

n.s


Type of family Father of a child with disabilityFather of children without disability

Mother of a child with disability 30 6.90 0.687Mother of children without disability 30 6.67 0.879

t{57) = 1.110, n.s

Volume 15, Issue 3, December 2009 JOURNAL OF FAMILY STUDIES 251


The majority of parents (in both researchgroups) described their immediate family: (a) onthe real cohesion dimension as connected (fathers)and very connected (mothers), (b) on the realadaptability dimension as structured (fathers &mothers), and (c) on the real family type as mod-erately balanced (fathers of children with disabili-ties and mothers in both groups) and balanced(fathers of children without disabilities). Parentsdefined mainly their ideal cohesion as very con-nected {ííúitTS and mothers), adaptability as flexi-ble (fathers) and very flexible (mothers), and typeof family as balanced (mothers) and moderatelybalanced {{athtrs) (Tables 4, 5 & 6).

According to the qualitative findings of thestudy (interviews), families raising children withor without a disability present some commonparameters of family functioning and organiza-tion (Table 7 presents the parameters that had the

TABLE 4 : REAL A N D IDEAL SCORES OF COHESION

highest percentages). In general, families functionin a fairly cohesive way. For example, parents rais-ing a child with a severe disability stated: 'Ourchild has brought us closer and has made us feelunited' (Father), 'My husband understands memore, he supports me. He is a good father and agood partner. He places his family above all' (Moth-er). Parents raising children without disabilitiessaid: 'I feel closer to my wife and my children, thanto people outside my family' (Father), 'We are sup-porters of each other, and we discuss our choices anddreams' (Mother).

Families also presented adaptability in theirdaily life. Parents raising a child with a severe dis-ability reported that, although they have manyproblems and difficulties in their everyday life,they have developed greater resilience in the faceof crises, a greater ability to handle stressful expe-riences, and also adaptability to the condition of

How parents estimateand wish cohesion

Real cohesion Father of a child with disability

Father of children without disability

Mother of a child with disability

Mother of children without disability

Ideal cohesion Father of a child with disability




TABLE 5: REAL A N D IDEAL SCORES OF ADAPTABILITY

How parents estimateand wish adaptability

Real adaptability Father of a child with disability




Ideal adaptability Father of a child with disability




Disengaged

3(10%)3(10%)

6 (20%)

2 (6.66%)

1 (3.33%)

1 (3.33%)

Rigged orchaotic

21 (%)

15(50%)

18(%)

15 (50%)

6 (%)

4(13.33%)

1 (3.33%)

Separated

10(33.33%)

7(23.33%)

7 (23.33%)

9 (20%)

5(16.66%)

2 (6.66%)

1 (3.33%)

Structured

7 (23.33%)

6 (20%)

8 (26.66%)

8 (26.66%)

4(13.33%)

10(33.33%)

3(10%)

4(13.33%)

Very connected/Connected Enmeshed

6 (20%)

6 (20%)

3(10%)

7 (30%)

7 (23.33%)

5(16.66%)

4(13.33%)

4(13.33%)

Flexible

8 (%)

2 (6.66%)

5 (%)

10(33.33%)

12(40%)

9 (30%)

7 (23.33%)

11(36.6%)

14(46.66%)

14(46.66%)

12(43.33%)

18 (60%)

22 (73.33%)

25 (83.33%)

25 (83.33%)

Very flexible

2 (6.66%)

1 (3.33%)

2 (6.66%)

2 (6.66%)

5(16.66%)

4(13.33%)

18(60%)

18(60%)



TABLE 6: REAL AND IDEAL SCORES OF FAMILY TYPE

How parents estimateand wish the family type

ModeratelyExtreme Mid range balanced Balanced

family type family type family type family type

family type Father of a child with disability 3(10%) 12(40%) 15(50%)Father of children without disability 2(6.66%) 9(30%) 15(50%) 4(13.33%)

Mother of a child with disability 3(10%)Mother of children without disability 1 (3.33%)

11(36.6%) 15(50%) 1(3.33%)11 (36.6%) 16 (53.33%) 2 (6.66%)

Ideal family type Father of a child with disabilityFather of children without disability 1 (3.33%)

6(20%) 10(33.33%) 14(46.66%)2(6.66%) 14(46.66%) 14(46.66%)


6 (20%) 24 (80%)8 (26.66%) 22 (73.33%)

TABLE 7: COMMON CHARACTERISTICS OF FAMILY FUNCTIONING AND ORGANIZATION AS REPORTED BYPARENTS

Common Father of a child Mother of a child Father of children Mother of childrencharacteristics with disability with disability without disability without disability

A/=30

Members functionin a cohesive wayParents appearadaptability to theirfamily lifeRole assignmentis agreedThere is complimentarilyof rolesMothers undertake thegreatest burden of res-ponsibilities of the familyMothers overfunction

24

25

26

18

29

30

%

80%

83.33%

86.66%

60%

96.66%

100%

N=30

22

28

25

14

30

30

%

73.33%

93.33%

83.33%

46.66%

100%

100%

N = 3 0

22

20

24

22

19

15

%

73.33%

66.66%

80%

73.33%

63.33%

50%

A/=30

25

21

26

24

21

15

%

83.33%

70%

86.66%

80%

70%

50%

the child's disability. Parents said: At the begin-ning it was very difßcult ... Notu I feel muchstronger and able to give courage to my family andto other women who have the same problems^(Mother of a child with disability), 'I believe thatwe have shared housework in such a way that wehave time' (Father of a child with disability),'Luckily, I have great help from my husband'(Mother of children without a disability).

The majority of parents reported that roleassignment is agreed (in both research groups).For example, parents of a child with a severe dis-ability said: / believe that we have shared tasks insuch a way that we have time for each other'

(Father), In a family, each member must be able toexpress their own opinion, it is wise to respect eachother's opinions and it is only right for every memberto express their own opinion on serious matters(Mother). Parents, also, reported that they try tohave complementarity of roles stating: 7 amalways behind the children to help them. If, for somereason, I cannot be there, my husband is there tohelp' (Mother of a child with disabilities), 'Wehave decided that I will bring the money and so Iwill be at work, and my wife will stay home foreverything {^íú^et of a child with disability).

The mother undertakes the greatest burden ofresponsibilities and obligations concerning the


Assimina Tsibidaki and Anastasia Tsamparii

family across comparison groups. As well, moth-ers (in both research groups) overfunction. Moth-ers stated the following: 'Unfortunately, everythinghas to be done by me, work, housetvork, children.Men are... .you know, rather indifferent, they do notbother very much about the housework' (Mother ofa child with disability), 'My husband works all daylong and he is away; he does not help in any way,and everything has to be done by me' (mother ofchildren without disability). This overfunction ofthe mothers' role is recognized as well by theirhusbands, with fathers stating: 'My wife is the cap-tain of our house, I do not know how she managesall, I admire her' (Father of a child with disabili-ty), 'Because of my demanding work, I cannot takecare of the child' {¥athei of a child with disability),'Of course, my wife gets more tired, I wish I couldhelp her more but I just can't find the time' (Fatherof children without disability).

In families raising a child with a severe disabil-ity there are distinguishing parameters of familyfunctioning and organization (Table 8). Every-thing functions and is organized around the childwith a severe disability. Parents often reported:'All our life is turning around the child'. A Fatherstated: 'Our life and daily schedule depends on ourchild (mentioning the name of the child with dis-ability)'. Parents in families raising a child withdisability tend to be overprotective with numericalsupremacy in mothers. Parents said: 'I am alwaysbehind him to help him. If, for some reason, I can-not be there, my husband is there to help' (Mother),'We are continuously in readiness, to dress him, to

feed him. It is us who are always there to assist himwith everything he needs to do' (Father), 'Although

she is 10 years old, she still sleeps in our bedroom'(Mother), 'We are always with him. Maybe this isnot too good for him' (Father).

Siblings (mainly female ones) are oftenassigned a parental role. Parents reported: 'Helentakes care of the little one (child with disability) alot. When I am out at work she is the one who takescare of all his needs. She is really doing a great job'(Mother), 'The older one (sister) takes care of thelittle one (child with disability). She is like a secondmother to her. Not only taking care of her but alsoprotecting her' (Mother), 7 believe that Peter willtake care of his sister when we pass away. He haspromised it to us' (Father).

Fathers overfunction in their work. Mostfathers are forced to have two different jobs inorder to cover the family's extra expenses. Parentsreported: 'I am in my job on a 20 hour basis. It isvery tiring for w/(Father), 'The problem is that Iam working a lot, in order to afford all the familycosts' (Father), 'He is a good father and places hischildren above all, and he wants to help me as muchas he can, but because of his work he is always tiredand I can understand this' (Mother).

DISCUSSIONThe target of the present research was to depictthe cohesion and the adaptability of 30 Greekfamilies raising a child of school age with a severedisability and then to compare their experiencewith that of families raising children without dis-ability. According to the quantitative fmdings ofthe study, there is no statistically significant dif-ference between the parents (of children with andwithout disability) in relation to the organization

TABLE 8: SPECIAL CHARACTERISTICS OF FAMILY FUNCTIONING AND ORGANIZATION IN FAMILIES RAISING ACHILD WITH A SEVERE DISABILITY

Special characteristicsFather of childwith disability

Mother of childwith disability

A/ = 30 %

30 100%10 63.33%13 43.33%28 93.33%

A/ = 30 %

30 100%29 96.66%14 46.66%27 90%

Everything is organized around the child with disabilityOverprotectiveness towards the childSister's parentificationFathers overfunction mainly in the area of their work

254 JOURNAL OF FAMILY STUDIES Volume 15, Issue 3, December 2009


of family in the following dimensions: cohesion,adaptability, type of family and in how they wishtheir family to be within these categories ofdimensions. Also, parents estimate and wish thecohesion, the adaptation and the type of family tobe in the healthy zone according to the revisededition of Olson Circumplex Model (Olson1991). These findings confirm those of otherstudies which suggest that families raising a childwith disability function effectively although theyexperience exceptionally stressful situations(Antzakli 2003; Beavers & Hampson 1990;Marsh 1993; Seligman & Darling 2007; Tsibida-ki 2007). Studies on non-Greek families (Asia,United States) suggest that parenting of childrenwith disability can be successful (Wai-Ping Li-Tsang et al 2001), while others suggest that thepresence of a family member with a disabilitymay contribute to the cohesion of the familymembers, as well as contribute positively to thequality of life of individual members of the family(e.g. Sammers et al 1989, Taanila et al 1999,Wikler et al 1981 and Winzer 1990, cited inWai-Ping Li-Tsang et al 2001: 62). It should bementioned that, although there was no statisticaldifference in the i-test of real and ideal familytype for both research groups, there was signifi-cant difference between the scores of fathers.Fathers of children with disability scored lower onreal and higher on ideal family type compared tofathers of children without disability. This may bean indication that fathers of children with disabil-ity experience higher levels of frustration com-pared to fathers of children without disabilities.

Additionally, according to the qualitative find-ings, families raising children with or without adisability share some common characteristics intheir functioning. This research finding is consis-tent with those of other studies which have indi-cated that there are no differences in familyfunctioning among families of children with orwithout disability (Dyson 1997; Gul-Fisiloglu ÔCFisiloglou 1996; Lamb & Billings 1997; Luter-man 1991; Magill-Evans et al 2001; Morrison &LZetlin 1992; Tansksley 1993). The following four

common characteristics of family functioningwere found in both research groups: Familymembers in both research groups function in acohesive and adaptive way. Many studies havereported that families raising a child with disabili-ty develop a high degree of cohesion, which func-tions as a decisive adoptive factor and alsocontributes substantially to the family's wellbeing(McCubbin, Thompson & McCubbin 1996;Patterson et al 1993). The adaptability of thefamilies raising a child with a severe disability isimportant. The ability of a family to be fiexibleand adaptable is predictive of overall positivefamily functioning (Lusting & Akey 1999),Moreover, various studies have suggested thatthese families present a high degree of cohesionand adaptability (Lusting & Akey 1999); thesedimensions contribute to the development of thechild with disability (McCubbin & Huang 1989)and function as protective factors for these fami-lies. The existence of a high degree of cohesionand adaptability are regarded as potentialresources available to a family when confrontedwith family Stressors; these resources are associat-ed with family strengths and resilience whichenable families to function effectively when con-fronted with stress (Lusting & Akey 1999).

Secondly, role assignment is agreed upon. Thefindings of the study indicate that parental opin-ions (in both research groups) about tasks thathave to be fulfilled in the family coincide. Assign-ment of roles is not imposed but agreed upon bythe parents. It has been argued that families rais-ing a child with disability do not differ in theirfunction of daily pastimes with their childrencomparative to families of children without dis-ability (Ehrmann et al 1995). An interesting find-ing in families raising a child with a severedisability is the fact that everything functions andseems to be organized around the needs of thechild; this suggests an agreed upon strategy and anecessary function of the family in order to facethe increased demands of care imposed by thecondition of the disability. Thirdly, mothersundertake the greatest burden of responsibilities



and obligations of the family. This fmding sug-gests that mothers perform more family-basedtasks than fathers and undertake mainly roles ofcare in the family. This fmding is consistent withother research fmdings in Greek families (Mara-tou-Alipranti 1995) as well as in families of othernationalities (Lamb 1986; Schilling, Schinke &Kirkham 1985). It is also consistent with fmdingsconcerning Greek families raising children withdisability (Antzakli 2003; Tsibidaki 2007). Abasic fmding of the study is that mothers,although undertaking various roles, can adapteffectively. This is attributed to the fact that, inthe Greek family, women are expected to performmore roles than men in the household (Georgas1999). This fmding is consistent with the fmd-ings of other studies in different cultural contexts(Lusting & Akey 1999).

Finally, mothers of children with disabilityreport that although they fmd their maternalrole tiring, they also state that, when a new needarises (e.g. due to inevitable medical care) and,therefore, more tasks need to be fulfilled, theirhusbands undertake more roles and become 'thereal helpers'. This complementarity of roles(Ackerman 1966) was found to play a decisiverole in the functioning of the families in orderto face the demands of care imposed by the con-dition of disability of their child. Families rais-ing a child with disability change 'in akaleidoscopic way' with the passing of time andespecially when the child presents new medicalneeds and demands. According to Ackerman(1966: 90-91), an important characteristic of afunctional family is its capacity to shift roles, 'tocultivate new levels of complementarity in fami-ly role relationships, to fmd avenues for thesolution of conflict, to build a favorable self-image, to buttress critical forms of defenseagainst anxiety, and to provide support for fur-ther creative development'.

Equally, in the families raising a child with asevere disability we distinguished some specialparameters of family functioning and a particularorganization, which, however, do not render

them dysfunctional. More specifically, familiesare child-centred (100%). The condition of dis-ability seems to function as organizer of the fami-ly system. Families organize their roles around theneeds of the child with disability. This organiza-tion becomes a powerful support network for thechild, but in some cases it causes the 'parentifica-tion' of elder siblings. This parentification maythreaten the hierarchy and therefore the familystructure. Generally, families present an explicithierarchy in which the parents have the leadingrole, but the child with disability determines theroles and the activities of the sub-systems becauseof his/her difficulties.

Another interesting fmding suggests that mostfathers overfunction mainly in the area of theirwork, in order to cover the increased familyexpenses, and that they also have additional rolesin the function of the family. This is a commonpractice in Greece due to the lack of supportinggovernmental networks and discriminatory prac-tices in the periphery, which have resulted in a lotof negative consequences (particularly financialones) on the families (Tsibidaki & Tsamparli2007). On the other hand, as the results of thestudy suggest, the families of the sample raising achild with disability face the lack of governmentalnetworks by turning to their wider family forsupport. That these families present high levels ofcohesion in their functioning and adapt to thecondition of the child's disability may well be dueto additional extended-family support.

LimitationsThere are a number of limitations in the presentresearch. The results portray an overly positiveview of adaptability and cohesion in families whohave a child with a severe disability. This raisesthe question of social desirability responses. Itshould be stated that FAGES-III has a 'low corre-lation with social desirability of at least two fac-tors (adaptability), while a moderate correlationfor cohesion' (Gaughan 1995: 39). The positiveview we found may be due to the following: a)the sample of the study consists exclusively of


Adaprability and cohesion of Greek families: Raising a child with a severe disability on the island of Rhodes

those who responded to our call and were there-fore more open and ready to share their experi-ence (more flexible) than those who refused toparticipate. Therefore, the results do not apply toother families who are likely to function withmore or less closed boundaries; b) the membersof the Greek family support each other a lotbecause their relationships are based on collectivevalues; c) all families of the study were intact andtherefore much more functional than other typesof families (single-parent families).

Other limitations include that the sample issituated in a community in the periphery ofGreece. The differences in culture and valuesystem from those not on the periphery mayinfluence family functioning of families raisinga child with a severe disability. It would, there-fore, be most desirable to carry out a compara-tive study between the sample of the study andothers situated in the capital. Also, it would bemost interesting to carry out a cross-culturalstudy on the same research area. Moreover, thestudy's sample inclusion criteria indicated thatonly one child in the family was diagnosed witha severe disability; results may vary if more thanone member presents with a disability. In addi-tion, the sample inclusion criteria (intact fami-lies) suggests that the families under study aresupported not only by their structure (both par-ents are present) but also by their culture (theyfunction collectively). Therefore, the results ofthe study can not be generalized to apply tofamilies with different structure (single-parentfamilies, stepfamilies, remarried families etc.).Furthermore, a comparison between differentdegrees and categories of disabilities would bemost desirable. Finally, the administration ofadditional instruments to include measuresother than those of self-report for data collec-tion could be used to include other facets ofthese families' functioning. As Ganong (2003)has commented, there is no doubt that familymeasurement is a 'challenge' to the researcher;studying families is likely to be harder thanstudying individuals.

CONCLUSIONS AND IMPLICATIONSFOR PRACTICEIn conclusion, the results of this study suggestthat families raising a child with a severe disabili-ty present certain characteristics in their function-ing that distinguish them from families ofchildren without disability but these differencesdo not render them dysfunctional. The majorityof the families demonstrate regular cohesion andadaptability in their family functioning. Theanalysis of FACES-III showed that parents gradedtheir family functioning in the healthy zone offamily evaluation.

The present study focused on the functioningof a particular family system, that of a child witha severe disability. The intention of the researcherswas to reduce the existing research gap on Greekfamilies with a child with disability and also tocontribute to research on these families which hascome to contradictory deductions at an interna-tional level. According to the results of the pres-ent research these families present their owndistinguishing characteristics, and these charac-teristics do not, necessarily, render them dysfunc-tional. This finding is important, because itconfirms the view that families are complex sys-tems whose functions depend on many factorsand, therefore, when we work with them weshould not adopt a pathological model but weshould equally explore their strengths.

It is recommended that future research shouldfocus on family functioning with particular refer-ence to family practitioners (social workers, clini-cians and educators) and ways to involve thefamily (and its assessment) when treating thechild with disability. It is most important tostudy and understand parental views, roles andtheir impact on the current behaviour of the fam-ily. This will help specialists to work with familiesaiming to find the appropriate strategies that willhelp families to adapt to or cope with the experi-ences of raising a child with disability. Addition-ally, a key principle in the work with childrenwith severe disability is the ability of the specialistto discern the strengths of these families.



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F O R T H C O M I N GCHILD SUPPORT

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