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May 6, 2010 - Geraldo A. Fiamenghi a; Aline G. Vedovato b; Maira C. Meirelles a;Marcia E. Shimoda a a U. Presbiteriana Mackenzie, Pos-Graduacao em ...
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Journal of Reproductive and Infant Psychology

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Mothers' interaction with their disabled infants: two case studies

Geraldo A. Fiamenghi a; Aline G. Vedovato b; Maira C. Meirelles a;Marcia E. Shimoda a a U. Presbiteriana Mackenzie, Pos-Graduacao em Disturbios do Desenvolvimento, São Paulo, Brazil b Fundação Pio XII, Psychology, Barretos, Brazil Online publication date: 06 May 2010

To cite this Article Fiamenghi, Geraldo A. , Vedovato, Aline G. , Meirelles, Maira C. andShimoda, Marcia E.(2010)

'Mothers' interaction with their disabled infants: two case studies', Journal of Reproductive and Infant Psychology, 28: 2, 191 — 199 To link to this Article: DOI: 10.1080/02646830903295042 URL: http://dx.doi.org/10.1080/02646830903295042

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Journal of Reproductive and Infant Psychology Vol. 28, No. 2, May 2010, 191–199

Mothers’ interaction with their disabled infants: two case studies Geraldo A. Fiamenghi*a, Aline G. Vedovatob, Maira C. Meirellesa and Marcia E. Shimodaa a

U. Presbiteriana Mackenzie, Pos-Graduacao em Disturbios do Desenvolvimento, São Paulo, Brazil; bFundação Pio XII, Psychology, Barretos, Brazil (Received 23 April 2009; final version received 2 August 2009)

Taylor and Francis CJRI_A_429678.sgm

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Journal 10.1080/02646830903295042 0264-6838 Original Taylor 02009 00 Dr. [email protected] 000002009 GeraldoFiamenghi & ofArticle Francis Reproductive (print)/1469-672X and Infant (online) Psychology

Interactions between mothers and infants have recently been the object of many studies, which uncover fundamental aspects of attachment and development. For disabled infants, comprehension of those interactions is particularly significant because the mother’s behaviours can offer important clues to professional staff who work with the infant, signalling specific needs that may not be detected with standard tests. The Theory of Innate Intersubjectivity proposes that human beings possess an innate ability to share subjective states. The aim of this research was to analyse in detail the interactions of two mothers and their disabled infants. Footages of two mothers and their infants with different disabilities (a boy with hypotonia and a girl with Down syndrome), in normal daily activities of bathing, feeding and playing with the infants, were studied with microanalysis frame-byframe, employing descriptive categories defined by Fiamenghi to identify intersubjective states. Results showed that intense interactions occurred in both dyads. However, the affective quality of the interactions varied according to the each mother’s ability to share emotions with her child and the infants’ responses to her affectionate states. The findings indicate that a mother of a disabled infant, regardless of the precise nature of the disability, should be aware that their child’s development will benefit from a positive affective interaction with them. Future research should aim to develop programmes of intervention with parents that will equip them with information and procedures to help them cope with their infants’ disability, and to improve their communicative and emotional skills in daily activities, as well as sharing their doubts and feelings regarding the difficult task of raising a disabled child. Keywords: mother–infant interaction; disability; intersubjectivity; development.

Introduction Interactions between mother and infant have been studied to reveal fundamental aspects of affective attachment and stimulation of development and learning of motor skills, cognitive abilities and language. Recognition of the child’s Innate Intersubjectivity presents a new paradigm for understand human interactions and their emotional regulation (Trevarthen, 1984, 1998; Trevarthen & Aitken, 2001). An important concept, when dealing with intersubjectivity is the idea of a system which is the neural basis to social abilities not verbally mediated, called intrinsic motive formation or IMF (Aitken, 2008). We are enabled to perceive the infant as an active, coherent and motivated being, *Corresponding author. Email: [email protected] ISSN 0264-6838 print/ISSN 1469-672X online © 2010 Society for Reproductive and Infant Psychology DOI: 10.1080/02646830903295042 http://www.informaworld.com

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ready to establish relations with the human environment from birth, especially, but not only, with their mother (Brazelton, 1979, 1993; Tronick, 2007). There is an essential bidirectionality in those relations – not only do infants receive information from mothers, but they also provide information for them and offer ways to achieve synchronically attuned interaction (Fiamenghi, 1999). An innate ability to share subjective states has been confirmed in studies of neonates’ stimulation of perinatal care (Brazelton, 1979; Brazelton & Nugent, 1995) and of neonatal imitation (Kugiumutzakis, 1993; Meltzoff, 1985; Meltzoff & Moore, 1989; Nagy, 2008; Nagy & Molnár, 1994). Communication between mother and infant occurs by many means: it employs facial expressions, gazing, whole body movements, gestures, speech, writing, and even crying. The ways parents offer care, talk, guidance and orientation to meet the infant’s interest and affection influences the child’s future life (Devine, 1993). Beebe (1982) emphasises the role of temporal organisation of ‘coaction’ and turn-taking between mother and infant in their non-verbal communication, which has a special emotive quality for the infant, contributing for the self-regulation of the infant’s mind (Schore, 1994). For disabled infants, comprehension of those interactions is important for professional staff who work with the infant because the mother’s behaviour can offer crucial clues, signalling specific needs that may not be detected by standard clinical assessments. Disabled infants’ development is compromised and families need wellinformed guidance as how to behave to meet their children’s special needs. Studies on the daily activities of mothers and disabled infants may give valuable information on alternative forms of communication that disabled infants develop, or, when their actions are similar in form to those of non-disabled infants, on changes in temporal patterns in their behaviour. Studies of the relations between a disabled child and the family have proved that the first experiences of the parents with the child may be seriously affected (Carpenter, 2000). A family faces difficulties from the moment the child’s disability is disclosed, and different kinds of disability and give rise to different ways of coping with and understanding them (Bailey et al., 1999; Darraht, Evans, & Adkins, 2002; Glasscock, 2000; Kerr & Mclntosh, 2000; Marchese, 2002; Ortiz, 2005; Pelchat, Bisson, Ricard, Perreault & Bouchard, 1999; Rodrigues, 2005). Parents generally love their children and try to care for them well. Their fears stem from lack of information, and they turn to professional help for reducing doubts, and decreasing stress (Russell, 2003). Social support from family, friends, neighbours, teachers and peers is fundamental for parents who are trying to cope with developmental delays and stress in engagements with the child (Fiamenghi & Messa, 2006). In general, families with disabled children can be considered an at-risk group, meaning that conflicts may appear or not, due to the possibilities or not of the family to adapt to the new situation (Nuñez, 2003). Actually, in a study with parents of children with chronic disabilities, Schwartz (2003) concluded that parents reported receiving gratification from fulfilling their parental duties and from learning about themselves. This research investigates the ways two mothers interacted with their disabled infants during specific situations of bathing, feeding and playing, analysing in detail their shared emotional experiences to clarify differences in their communication. Method A qualitative case study procedure, using microanalysis of DVD footage, was employed. Microanalysis is an effective and practical technique to investigate

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interactions because frame-by-frame observation favours the perception of key events that are missed with less intensive observation. Ethical procedures were undertaken to avoid risks to participants, assuring their right to leave the research at any time, and full confidentiality regarding personal information with permission to use footage for scientific research only. The research was approved by the institution’s Ethical Committee (CEP/UPM no. 923/05/065 and CAAE, no. 0026.0.272.000-06). Participants A microanalysis was made of a DVD containing the footage of interactive situations of two mothers with their disabled infants. The first mother–infant dyad was a 25year-old woman and her 20-month-old Down syndrome daughter (Dyad 1). The Down syndrome infant was diagnosed at birth, because the mother did not attend antenatal tests. The infant had no other complications that may be usual due to the syndrome, and was a healthy girl by the time the records were conducted. The mother had other four children, all of them older than the Down syndrome infant. This girl had attended a specialised institution for disabled children for some months, but due to the parents’ working schedule, it became impossible for her to stay at the institution. As a result, the grandmother, who lives in another house in the same block, stays with the infant, as well as with the other grandchildren. The family is poor, but the mother tries to be with her children as much as possible and all of them seemed contented with the situation. The second dyad was a 26-year-old woman and her 20month-old hypotonic son (Dyad 2). The infant was diagnosed with hypotonia at the end of the first year, because motor development did not seem normal to the parents. The boy was attending a special institution for disabled children, but even there the only information obtained was that he had hypotonia, without any other specification; it seemed that his only difficulty was to be seated upright for a long time without support; he did not have any trouble when moving his head, sustaining eye contact, and could sit without support on the floor, with his legs crossed. His health was referred to as normal by the mother. This mother had an older daughter and did not have a job. The family is also poor, but their economic status is better than Dyad 1. Procedures The footage was taken during three different daily activities: feeding, bathing, and recreation and each dyad was recorded over a 30-min period (10 min for each activity) in the participants’ homes, using a DVD Sony Handycam 40 video camera. DVDs were extensively watched, frame-by-frame and behaviours were coded by two independent coders according to the procedure of Fiamenghi (1997, 1999, 2007). Intercoders reliability measure was 0.98 (Cronbach’s Alpha). Results and discussion Behaviours of both dyads were categorized in three interactive categories, based upon the definitions of Fiamenghi (1999), as follows. (i)

Interaction: mother and infant are involved in each other’s behaviour, normally starting with a gaze towards the other, followed by vocalizations, smiles, pointing, waving, looking at the other and fixing gaze on the other.

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(ii) Invitation: either the mother or the infant tries to make contact, without success, as the other is not receptive. This may or may not lead to a new interaction, but it has the potential to create a new interaction. (iii) Imitation: either the mother or the infant, (a) reproduces the other’s behaviour; (b) tries to copy the other’s behaviour but has not been successful; or, (c) behave in the same way, at the same time – exhibiting what Stern (1985) calls ‘attunement’. Table I shows interactive behaviours of both dyads. Emotional-affective categories were defined as follows.

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(i)

Care: the mother and the infant seek physical contact, showing interest, touching and talking in a low and slow tone. (ii) Comfort: the mother touches the baby, trying to avoid physical discomfort, or to restore affection when discomfort was inevitable. (iii) Curiosity: the baby gazes towards the mother, observing her behaviours, with eyes wide open. (iv) Happiness: the mother or the infant smile, the infant vocalises, ‘squealing’, showing a relaxed expression. (v) Friendly: mother or infant look at each other, smiling, with or without vocalisations. (vi) Indifference: mother or infant seem to focus attention somewhere else, disregarding the other’s presence. (vii) Irritation: the mother speaks in a rough or loud way or hits the infant; the infant cries or throws tantrums. In order to show a better scenario of mother–infant affective-emotional interactions, the above categories were grouped into two more general ones. (i) Positive emotions: care, comfort, curiosity, happiness, friendly. (ii) Negative emotions: indifference, irritation. Table 2 shows affective-emotional behaviours of both Dyads. Comparing the two dyads, we observe that participants of Dyad 2 engage in more interactions than Dyad 1. Taking account of all three kinds of engagement (interactions, imitations and invitations), Dyad 1 totalled 79, whereas Dyad 2 had 100 interactive situations, most of which were during playing activity. A Fisher exact test was performed to compare the dyads, considering only ‘invitations’ and ‘interactions’, as ‘imitations’ were only displayed by the infants in very few occasions, and results show Table 1.

Iinteractive behaviours (Dyad 1 and 2). B

Interaction Invitation Imitation

B

F

F

P

P

M1

I1

M2

I2

M1

I1

M2

I2

M1

I1

M2

I2

13 2 –

13 5 1

9 – –

9 3 –

5 2 –

5 2 –

5 1 –

5 1 –

12 – –

12 3 4

22 7 –

22 5 11

B: Bathing, F: Feeding, P: Playing, M1: Mother 1, I1: Infant 1, M2: Mother 2, I2: Infant 2.

Journal of Reproductive and Infant Psychology Table 2.

Affective-emotional behaviours (Dyad 1 and 2).

Negative emotions Positive emotions

Mother 1

Infant 1

Mother 2

Infant 2

0 41

0 35

16 13

19 5

that this difference between the dyads is not significant (p-value = 0.576). Figure 1 shows the behaviours in engagements for both dyads. Both mothers develop engagements with their disabled children, in spite of the different disabilities of their infants. However, when we look at the quality of affective or emotional experiences mother and infant are sharing during the observation period, results are quite different, and these differences do not appear to be due to the infants’ disabilities. They are mainly reflections of each mother’s capacity for engagement with her infant. Mother and infant of Dyad 1 are always engaged in positive, affectionate interactions, displaying care, comfort, happiness, and curiosity. Although this mother has four other children and works full time, she is able to be totally involved with her Down syndrome daughter. During the filming, the mother says to the researcher: ‘After she has started special school, I don’t even think she is so much Down anymore!’, which describes the mother’s feelings of acceptance and desire for her daughter’s inclusion in a ‘normal’ world. We could also observe during the recorded footage that the infant’s brothers and sisters were around all the time, playing with her, calling her attention and including her in their activities. Therefore, the infant appears to have an adequate cognitive and emotional development, vocalising, playing and becoming involved in all the interactions. Such sharing of affections and interacting with the world in intersubjective exchanges is surely a benefit for the development of a disabled child (Beebe, 1982; Glasscock, 2000; Schore, 1994; Trevarthen, 1984). Figure 1. Interactive behaviours (Dyads 1 and 2).

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Figure 1.

Interactive behaviours (Dyads 1 and 2).

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When we look at Dyad 2, a totally different scenario appears: 66% of all the interactions have a negative emotional sign, with ‘irritation’ and ‘indifference’, both mother and infant showing those reactions. The mother seems not to be motivated to interact effectively with her son. As a result, she easily loses her patience during feeding, screaming at the infant when he vocalises, and the boy cries in response. When bathing her son, the mother slaps his hand, and as the boy looks at her in surprise, she says: ‘Why are you looking at me this way? I’m not afraid of you!’ The quality of her playing is poor, as she actually mentions her inability to play during the footage. Consequently, the infant, who is hypotonic without any other associated disability, presents a noticeable delay in motor and cognitive development, with few vocalisations and no initiative in starting interactions or playing. This mother appears to need special help to improve her abilities to cope with her disabled child (Carpenter, 2000; Kerr & Mclntosh, 2000; Pelchat et al., 1999; Russell, 2003). A Fisher exact test was performed (p = 0.00), showing a highly significant difference between the affective-emotional behaviours of the two dyads. Figure 2 shows affective-emotional behaviours for both dyads.

Figure 2.

Affective-emotional behaviours (Dyads 1 and 2).

Conclusions News of the birth of a disabled infant must disturb the family system as a whole, making it difficult for the parents to cope with consequences of the experience (Carpenter, 2000). Nevertheless, this disturbance appears to be overcome in the case of the first dyad observed in this research. Although the infant is affected by Down syndrome, the experiences and interactions with the mother occur in such a positive way that the child shows a general development very similar to typical infants of her age. As infants can have a coherent response to others since birth (Brazelton, 1979; Fiamenghi, 1999, 2007), and soon develop communication by many expressive means (Trevarthen, 1979), mother and infant are normally able to share affection and learn Figure 2. Affective-emotional behaviours (Dyads 1 and 2).

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with each other. For disabled infants, this inherent ability to act like a person is fundamental for exploring and supporting their potential for developing cognitive and affective abilities. It has to be met in emotionally appropriate ways, because healthy communication stems from positive emotions (Fiamenghi, 1999). The second dyad showed that, even when there is abundant interaction, its quality may not be sufficient for an adequate development of the infant, when positive emotions are missing, even when the infant’s hypotonicity does not directly affect his cognitive development (Prasad & Prasad, 2003). Specifically referring to muscular hypotonia, Telg (1991) states that there are postures of the child that may help in enhancing muscle tonus, and it is fundamental that the family cooperates to support normalisation of the infant’s physical adjustment. If we consider emotions not only as products of development, but also regulators of the infant’s process of development and learning, the importance of helping parents, mainly mothers, to increase their ability to interact with positive affective tone with their disabled infants is clear. Conclusion The results suggest coherence with studies of mothers interacting with non disabled infants: interactions are a function of mothers and infants abilities of engaging in intersubjective exchanges, sharing emotional states; in fact, studies even point to the difficulties of autistic children to interpret others (Aitken, 2008). As a result, mothers are important actors in presenting their infants with possibilities to start and develop emotional interactive situations. Mothers in this study did not imitate their infants’ behaviours. Imitation seems to be an important part of interaction (Aitken, 2008; Beebe, 1998; Fiamenghi, 2007; Kugiumutzakis, 1993; Nagy, 2008). It would be important to investigate parents’ imitation of their infants’ behaviour in the context of other disabilities, apart from autism, to increase the comprehension of the imitative process in human development. Future research should seek ways of developing programmes of intervention with parents in order to equip them with information and procedures to cope with their infants’ disability, improving their communicative and positive emotional skills in daily activities, while allowing them to share their doubts and feelings regarding the difficult task of raising a disabled child. Acknowledgement The authors wish to thank Prof. Colwyn Trevarthen for his important remarks and comments on the manuscript.

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