Family functioning and disability: a study on Italian parents with disabled children

Abstract

The family of disabled persons often goes through periods of instability and mismatch; the birth of disabled children may affect communication, problem solving, satisfaction and general family functioning. The present study aims to explore the perception that both parents of disabled children have of their family functioning, measuring: the dynamics of the familiar functioning; the perception that the parental couple has about parenting and family functioning; the similarities between fathers and mothers in the perception of these dimensions. The research involved 50 parent couples (age: M=50.84; S.D=7.23), who have 100 disabled children. They completed: Family Assessment Device ( Epstein, Baldwin, & Bishop, 1983 ) to assess specific aspects of family functioning, such as problem solving, communication, roles, affective response and involvement, behavioral control and general functioning; Family Adaptability and Cohesion Evaluation Scales ( Olson, 2011 ), to measure family adaptability and cohesion. The parents of disabled daughters showed significantly higher on following scales: cohesion, communication and satisfaction. In contrast, the parents who have male sons showed high scores in the scale of flexibility. Parents of children with autism reported higher scores than the parents of children with pervasive developmental disorders in the following scales: cohesion, communication and satisfaction. The results suggest that family functioning when there is a disabled child might be affected by child’s gender and disability. Among the research limits there are the lack of a representative sample and the absence of a longitudinal study. In future studies, it is expected an evaluation of triadic family functioning to examine intergenerational differences in perception of family dynamics.

Keywords: Parentsdisabilityfamily functioningsatisfaction

Introduction

Family is an interpersonal system in balance between tendencies to stability and potential changes

(Malagoli Togliatti, & Catugno, 1996), that goes through a continuous process of identity construction

defined as “the family life cycle", characterized by developmental tasks that different members are

facing, and ending with the end of life (Erikson, 1982; Pellerone, 2013; Pellerone, Passanisi, &

Bellomo, 2015); therefore, the notion of "development stage" is no longer applied to individual

members, but to the family as a whole, highlighting the interdependence between the individual life

cycle and the family life cycle.

The family development model proposed by McGoldrick and Carter (1980) assumes that family

passes through a succession of distinct steps or stages that mark its path: the young adult between two

families, the young couple, the family with young children, the family with teenagers, the

“springboard” family for the children, and the family in old age. Each stage is characterized by specific

development tasks, that involve a renovation of the relations in torque level, of the parent-child

relationships and of the ones with the family of origin, and whose solution allows the passage to the

next stage and the acquisition of a family identity.

Families, therefore, evolve over time according to both the specific trajectories of each single

nucleus, and the phases of the life cycle; the individual evolutionary stages are linked to physical,

social, emotional-affective changes and critical events that the family could go through. According to

Hill (1949) the crisis is the result of multiple factors, namely: the stressful event and the consequent

difficulties; the greater or lesser capacity of the family to find resources; the representation the family

has about the event and its severity.

The overcoming of a critical event is given by several factors (Craparo, et al., 2014; Zani, 1997),

such as: the ability of the family to recognize and organize the available resources; the meaning it

confers to the event and to the family history; the way in which the family has dealt with the

developmental tasks related to the previous phases; and the relations with the external environment

(Magnano, Ramaci, & Platania, 2014; Pace, et al., 2015; Santisi, Magnano, Hichy, et al., 2014).

Therefore, the process of change required by stressful events includes several components, such as: a

new awareness by the family members; the attempts to arrive at a shared definition of the event; and the

search for structural changes in the family system to solve the problem (Pellerone, & Miccichè, 2015).

The more an individual, a couple, a family favor the aspects of emotional closeness and flexibility,

the more the event or the stressful situation has the possibility to be overcome, through coping

strategies that aim to achieve different goals (Patterson, 2002; Pellerone, 2015): reducing the number of

requests; acquiring resources not yet available for the family; reusing the resources already available;

learning to draw and to endure the tensions that go with the adaptation phase; and changing the way to

see the situation. Analyzing the operation of the family (as it is perceived by members of the system),

Olson and his colleagues identified, in 1983, three dimensions, which contribute to the overcoming of a

stressful event: cohesion, adaptability and communicationcommunication (Blandini, Fecarotta,

Buscemi, et al ., 2015).

Cohesion is the size that indicates the distance or proximity from the psychological, cognitive and

affective point of view, and it is pointed out through the emotional connection among the individual

members. Adaptability indicates the ability to change the family structure based on events that occur

during the life cycle. Communication is a mode that family members use to express their needs and/or

feelings. According to the different locations that families can take on within the three dimensions, the

authors identify sixteen types of family functioning that can be summarized in three main models: the

balanced family, the intermediate family and the extreme family.

a)The balanced families are considered the most functional, because they can both maintain an

internal cohesion (ensuring a feeling of safety), and allow the differentiation of the various

members as unique individuals; they show such a flexibility that allows the different members

to adapt themselves and adjust the family structure to changes; furthermore, communication

appears characterized by self-confidence and confidence in the others.

b)The intermediate families can be characterized by the combination of reduced flexibility and

good cohesion, or vice versa; in the first case, the rigid family appears to be characterized by

high levels of emotional closure and inadequate flexibility, rules perceived as inviolable, and

limited communication to structural models that make difficult an exchange based on

reciprocity. Conversely, the chaotic family is characterized by a too high flexibility, difficulties

in organizing themselves adequately when placed in front of negative and para regulatory events

(sudden and unexpected), since incapable of establishing rules, roles and functions. In contrast,

looking at the size of cohesion, the enmeshed families have poor differentiation among the

various members that appear stuck in highly conditioning relations. At the opposite pole, in the

disengaged families there are not authentic emotional connections and you may find difficulties

in the organization of the structure and in the establishment of firm rules; this nucleus appears to

be extremely complex because the families lived do not have a sense of valid belonging.

c)Finally, the extreme families represent the different types of dysfunctional family, being the

most problematic in terms of global functioning. They are the result of the intersection of the

extreme models on the pole of cohesion and flexibility: chaotic disengaged, chaotic enmeshed,

stiff entangled, stiff disengaged.

1.1.Problem statement

During a family life cycle, the critical events are various and can be caused by a variety of factors:

the entrance or leaving of a component in the family, the psychosocial deviances related to the

development of the children, or the birth of a handicapped child. In particular, the presence of a child

with physical and/or psychological disability causes a block in the family life cycle: this tends to inhibit

the conjugal integration between the parents and the general level of the family functioning; the

confusion of roles, the feeling of helplessness and dissatisfaction might induce a growing state of

malaise which, in some cases, can degenerate into psychopathological forms (Larcan, & Cuzzocrea,

2011; Valtolina, 2000; Vianello, 2002).

Having a child with disabilities has a significant impact on parents, particularly in terms of stress,

mental health (DeMeyer, 1979; Olsson, & Hwang, 2001; Yirmiya, Shakes, & Solomonica-Levi, 1998)

and family functioning (Hastings, & Brown, 2002).

Literature suggests a mutual relationship between the problematic behavior of the child, the parents’

stress and their consequent behavior (Pace, Cacioppo, & Schimmenti, 2012; Pace, & Zappulla, 2011;

Schimmenti, et al ., 2014); this ratio appears to be mediated by parents’ negative emotional reactions to

the problematic behavior of the child, and their psychological resources, such as problem solving

(Floyd, Harter, & Costigan, 2004), coping strategies (Opperman, & Alant, 2003; Pellerone, 2013) and

resilience (Herring at al., 2006; Van Riper, 2007).

Another dimension that influences the overall functioning of the family is the type of disability that

affects one of the members; the international literature shows that higher levels of stress are present in

families of children with autism than in those with physical disabilities (Fombonne et al ., 2001;

Holroyd, & McArthur, 1976; Pellerone, & Bellomo, 2015).

Especially the parents of children with pervasive developmental disorders (PDD) seem to show an

impaired level of mental health (Fisman, & Wolf, 1991), greater levels of stress (Dyson, 1997;Wolf,

Noh, Fisman, et al. , 1989), sense of worthlessness and guilt, intense anger, and even impaired physical

functioning, fatigue or exhaustion (Emerson, 2003; Hedov, Anneren, & Wikblad, 2000).

Moreover, comparative studies confirm that parents of children with ASD exhibit higher levels of

stress, depression, anxiety and emotional exhaustion than: parents of children with Down syndrome or

other types of mental retardation (Holroyd, & McArthur, 1976; Olsson, & Hwang, 2001; Wolf, Noah,

Fishman, et al. , 1989), parents of children with behavior disorders (Dumas, Wolf, Fishman, et al. ,

1991), or parents of children with chronic diseases (Bouma, & Schweitzer, 1990).

The presence of a child with disabilities also alters the normal family life cycle, resulting in a minor

sense of parental cohesion, less marital satisfaction, and a more general problematic family functioning

(Hutton, & Caron, 2005; Montes, & Halterman, 2008).

Compared to family cohesion, it appears to be correlated to the type of disability and to the social

competence of children with disabilities; for example, mothers of children with conduct disorders

report lower levels of cohesion than mothers of children with behavior disorders.

In reference to the family functioning, instead, recent literature shows that the majority of primary

caregivers report high levels of personal and marital stress, little time for family activities, lack of

spontaneity in communication and reduced flexibility in the management of professional and daily

activities (Bluth, Roberson, Billen, et al., 2013).

Lewandowski and colleagues also demonstrated that the level of family functioning is related to the

children’s coping strategies and to the negative perception that parents have about the child’s illness. In

particular, the use of coping strategies appears related to problem solving and communication skills,

and to the general family functioning (Lewandowski et al., 2010); in contrast, low levels of negative

thoughts seem to correlate with high scores on the communication domains, the emotional

involvement, the definition of intra-family roles and the behavioral control (Pellerone, Craparo, &

Tornabuoni, 2016).

Therefore, a number of factors appear to influence the overall functioning of a family with a

disabled child, including: the type of disability, the amount and nature of disability-related disorders,

the structural and psychological characteristics of the family and the related emotional, relational and

educational dynamics, the socio - cultural level and the quantity and quality of social supports that the

family has. Unfortunately, though, in literature, from time to time, only one or more of these factors

were examined, highlighting specific effects that cannot explain the process in its entirety, leaving not

clarified many relevant aspects that have not been possible to control, and suggesting, however, always

cautious in the interpretation of the results (Hodapp, Glidden, & Kaiser, 2005; Hodapp, & Urnbano,

2007).

Moreover, in the past, most of the studies examined the patterns of reaction to the stress of disabled

children’s mothers, leaving the perception of the fathers’ family functioning on the side (Keller, &

Honig, 2004; Ricci, & Hodapp, 2003); only recently the literature has emphasized the differential

aspects of the parental couple, and the differences were usually interpreted in relation to the different

involvement of fathers and mothers in care activities towards the child (Crowe, VanLeit, &

Berghmans, 2000; Pelchat, Lefebvre, & Perreault, 2003).

In particular, this comparison showed differences in the levels of perceived stress and the

impairment of health; for example, a Swedish report on parents with Down syndrome children showed

that mothers who spent more time taking care of their children with disabilities had lower scores in the

perception of well-being than fathers. In addition, a recent study about family, reported that mothers

experience more stress and pessimism about the future of the child, and they use antidepressants or

other therapies more frequently than fathers. In the same report, mothers of children with intellectual

disabilities consider the use of specific coping strategies, such as communication and continuous

dialogue with the family, friends, and social-health operators, more effective than fathers do.

The condition of disability of a child requires a family to implement not easy adaptation processes,

since most of the parents expresses feelings of fatigue and suffering regarding the path to take to

understand the situation and to find adequate family functioning modes.

In certain circumstances, the intervention of parent training appears to be a valid instrument to the

support and enhancement of parenting, aimed at restoring a balanced family functioning. It is a

program that aims to stimulate changes in the educational function of the family, reducing stress and

discomfort that the disability situations present. The application of the parent training also involves the

removal, inside the family, of the factors that determine problem behaviors in children with disabilities,

since increasing the autonomy of the child in the home area contributes to improve the quality of the

family life.

2.Purpose of the study

The present study aims to explore the perception that both parents of disabled children have of their

family functioning, measuring: the dynamics of the familiar functioning; the perception that the

parental couple has about parenting and family functioning; the similarities between fathers and

mothers in the perception of these dimensions.

In agreement with the literature we expected that:

a)mothers of children with disability report greater distress than fathers (Gray, 1994; Hastings, 2003; Konstantareas, Homatidis, & Plowright, 1992; Milgram, & Atzil, 1998; Wolf, Noh, Fisman, et al., 1989); b)parents of older children manifest a higher level of family stress than parents of younger children (Donenberg, & Baker, 1993; Bromley et al., 2004; Lecavalieret al., 2006; Tomanik et al, 2004); c)between the predictors of the family functioning there are: the presence of cohesion, adaptability, the small hallway and enmeshment.

3.Research method

3.1.Participants

The research involved 50 parent couples (age: M =50.84; S.D =7.23), who have 100 disabled children

(44 males and 56 females) attending two cooperatives for people with disabilities in the town of

Catania and Enna.

The instruments were administered during working hours in the cooperatives, providing, through an

information letter, a brief description of the investigation carried out, and specifying the scientific

nature and general objectives of the research. Moreover, an informed consent form was signed by the

parties before responding to the anonymous questionnaires.

3.2. Instruments

Participants completed an anamnestic questionnaire, the Family Adaptability and Cohesion

Evaluation Scales IV and the Family Assessment Device.

Anamnestic data were collected through the administration of a questionnaire constructed ad hoc

and divided into two parts: the first to acquire basic information, age and professions of parents; the

second for establishing the type of disability, sex age of child.

Family Adaptability and Cohesion Evaluation Scales IV (FACES IV) is a 20-item self-report

instrument that yields two orthogonal dimensions, cohesion and adaptability (Olson, 2011; Visani et

al ., 2015). The cohesion dimension ranges from extremely low levels of cohesion (disengaged) to

extremely high levels (enmeshed). Adaptability ranges from extremely low (rigid) to extremely high

(chaotic). Scores near the center represent optimum levels of these dimensions. Family mean and

distance from center (DFC) scores were calculated to determine family levels of reported adaptability

and cohesion as well as each family's relative position from the center of the circumplex.

Family function was measured with the Family Assessment Device (FAD) byEpstein, Baldwin, and

Bishop (1983) in Italian version of Grandi et colleagues (2007). Each item consists of a statement and

likert scale with four possible response options (strongly agree, agree, disagree, on strongly disagree).

The scale is applicable to both one- and two-parent families. The Family Assessment Device is based

on a transactional-functional model described by Epstein and colleagues. It contains scales measuring:

problem solving, communication, roles, affective responsiveness, affective involvement, and behavior

control. The General Functioning scale contains two items from each of these six domains and is

highly correlated with the total scone of the Family Assessment Device. The General Functioning scale

has demonstrated internal-consistency reliability and construct validity” and may be scored either as a

continuous scale ranging from 12 to 48, on as a categorical measure with a score of 27 or greater

defined as “dysfunctional.”

4.Data analyses

All analyses were conducted with SPSS software (v 23.0).

In reference to preliminary data the following analyses were performed: descriptive statistics in

order to examine variables involved in the perception of their family functioning; Pearson’s

correlations were determined to measure the relation between scores of Family Adaptability and

Cohesion Evaluation Scales and the Family Assessment Device.

To verify the hypothesis that parents of older children manifest a higher level of family stress than

parents of younger children, a Multivariate analysis of variance (MANOVA) is carried out.

To verify the hypothesis that mothers of children with disability report greater distress than fathers,

Student’s t test for independent samples was used to compare the mean between groups (mothers

versus fathers).

To explore the predictive variables of the family assessment, analyses of hierarchical regression for

separate blocks were used: (a) sex and age of parents in the first block; (b) sex, age and type of

disability of children in the second block; (c) the level of family cohesion and adaptability in the third

block. Each block of independent variables was evaluated in terms of what it added to the explanation

of the variability of the dependent variable at the time of its entry, evaluating the weight of all

predictors.

Findings

Results

In reference to the first research hypothesis, the T-test for independent groups revealed no

significant differences between the father and the mother in dimensions of Faces and Fad ( p = n.s).

So, the hypothesis that mothers of children with disability report greater distress than fathers is not

confirmed.

In reference to the second hypothesis, the Manova emphasizes the influence of independent

variables on Faces and Fad scores of mother; in particular the data show:

a)the main effect of mother’s age on the level of enmeshment (F=5.25; p <0.05) and

affective responsiveness (F=5.28; p <0.05): in particular mothers with older child got

higher scores in the dimensions of enmeshment;

b)the main effect of child’s gender on the level of enmeshment (F=7.65; p <0.05): mothers

of daughters show greater enmeshment;

c)the effect of interaction between mother’s age and child’s gender on the level of cohesion

(F=9.84; p <0.05) and enmeshment (F=19.04; p <0.01): in particular, younger mothers of

male children manifest more cohesion; older mothers of daughters have greater

enmeshment.

The Manova also shows the influence of the type of disability on fad and faces scores of both

parents; the data underline the main effect of the cohesion (F = 2.58; p <0.05) and the hallway (F =

2.74; p <0.05). Tukey’s post hoc emphasize that: parents with children with Asperger exhibit lower

levels of family cohesion (Table 5); parents of children with pervasive developmental disorder

manifest lower levels of disengagement (Table 6).

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To explore the predictive variables of the family assessment, analyses of hierarchical regression for separate blocks were used. The data analysis shows that predictors of the ability of problem solving are (Table 7): child’ sex and family flexibility (24.4% of the general variance).

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Predictive variable of family communication is the level of family disengagement (β=-2.09), accounting for only 8% of the variance. Predictive variable of the affective responsiveness is the mother’s age (β=2.09), accounting for 16.2% of the variance. At the last, predictors of control are (Table 8): sex and age of child (21.7% of the general variance). Therefore, appears confirmed the third research hypothesis

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Discussion and conclusion

In this study, through analysis of the perception of the characteristics of the family system of

parents with disabled children, it has been possible to verify the existence of similarities and

differences in the perception of family ties between fathers and mothers. Specifically, the study

explored: the dynamics of family functioning; the perception that the parental couple has their own

family functioning; and the similarities between fathers and mothers in the perception of their family

functioning and parental.

The analyzes showed that the mothers with high level of satisfaction and communication manifested

high perception of general family functioning, ability of problem solving, effective responsiveness, and

behavior control. Against, the mothers characterized by enmeshment manifested low level of problem

solving, clarity in the definition of roles and general functioning; likewise the mothers with perception

of rigid family adaptability seemed to manifest low level of problem solving, affective responsiveness

and behavior control.

The mothers with a perception of chaotic family adaptability were characterized by poor definition

of roles, reduced involvement and control. At the last, disagreement in the literature, in the mothers

with good level of cohesion were present low level of problem solving and general functioning.

The first hypothesis that mothers of children with disability report greater distress than fathers

appears not to be confirmed, although it appears interesting how: mothers with older child got higher

scores in the dimensions of enmeshment; older mothers of male children are more entangled; younger

mothers of daughters show greater flexibility; and older mothers of daughters have greater cohesion. In

reference to the fathers’ score, the father of a son manifested greater flexibility, the father of a daughter

more affective response; and the fathers of grown children seem to experience greater emotional

response.

Also the type of disability seems to affect the overall family functioning, in fact: while the parents

with children with Asperger syndrome exhibit lower levels of family cohesion, instead the parents of

children with pervasive developmental disorder manifested lower levels of disengagement. It has been

suggested that the presence of behavior and emotional problems contributes significantly to the stress

of parents of children with Asperger syndrome and pervasive developmental disorder.

At the last the third research hypothesis appears confirmed, in fact: sex of child and the family

flexibility seem to be predictive variables of the family ability of problem solving; predictive variable

of family communication is family disengagement; predictive variable of affective responsiveness is

the age of mother; and above all, predictors of behavior control are sex and age of child.

Literature points out how a harmonious family environment, characterized by good functioning, can

lead parents to be more sensitive to the children’s pain, to develop less depression and greater

functional involvement. While these protective effects have been identified, most of the research till

today has focused on the negative outcomes associated with the poor functioning of the family. Future

research should explore the functioning of the family as a possible protective factor.

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