Parental Stress and Resilience in Caring for Children with Learning Disability

 

This review returns to the theme of the strains and coping strategies relevant to the parental role in caring for children with significant learning disabilities.

The first study concerns both objective and subjective strains, perceived inadequacies of support, and the strategies used to enhance coping.

The second study is a survey of the emotional dilemmas experienced when a child is identified with a learning disability.

The final study in the review describes the findings of a survey among parents of children with autism attending mainstream schools, highlighting the range of feelings along the satisfied - dissatisfied spectrum, with particular reference to communication and responsibility for fostering social skills and relationships.

 

M.J.Connor                                                                                            February 2008

 

Strains and Coping Strategies

 

Kenny and McGilloway (2007) introduce their survey by noting the commonly-cited profound impact that may be experienced by parents when a neonate (or an older child) is identified with a significant learning disability.

 

They note also that typical research in this domain has highlighted the various sources of stress upon the parents, such as the restrictions imposed upon day to day routines and social life, conflicting attitudes within the family towards issues surrounding impairment, financial burdens, uncertainty over the future, and perceived inadequacies in the formal or informal support available.

 

Reference is made to the work of Brannan et al (1997) who discussed caregiver strain in terms of objective and subjective features. 

Objective strain relates to the observable circumstances and events arising from the child’s needs or behaviours; while subjective strain is a matter of emotional reactions, such as anxiety or sadness, or even anger and resentment. 

These authors suggested that there may well be greater levels of subjective strain and fewer sources of objective strain among families caring for a child with a disability, while the reverse appears to be the case among those caring for an adult.

 

Meanwhile, adaptive coping strategies are the processes and behaviours adopted by the carers to manage stress levels.

As described by White and Hastings (2004), among others, these may include the maintaining of positive perceptions of the child, along with optimistic attitudes, gaining information in order further to understand the nature of the condition,  fostering family cohesion, and identifying, and gaining access to, support services.

 

The survey by Kenny and McGilloway themselves set out to examine both coping strategies and the nature of strains among a sample of parents living in the greater Dublin area and caring for children with a range of intellectual disabilities. 

 

The sample comprised 32 parents, 24 mothers and 8 fathers, with an age range of 28 to 57 (mean age 44) recruited initially from the acquaintances of the first author (herself the parent of a daughter with a moderate learning disability) most of whom were members of one or more parent support groups.  A range of socioeconomic backgrounds were represented.  Half were in employment, while most of the remainder had given up paid employment to become full-time carers.

 

The age range of the children and young people was from 2 to 17 years. 19 of the 32 were male, and all had other siblings.  7 were diagnosed with a mild learning disability (IQ 50-70), 19 with a moderate disability (IQ 35-49), and 4 with a severe disability (IQ 20-34).  In 2 cases, there was no formal diagnosis.

 

The measures included the Caregiver Strain Questionnaire which covers areas reported to be significant in existing research, such as disruptions of family life and relationships or social opportunities, demands upon time, effects upon mental or physical health of family members, financial pressures, worry and feelings of guilt, fatigue, and feelings of embarrassment (as experienced during the preceding 6 months).  

 

The second measure was the Carers Questionnaire which gleans socio-demographic information (such as the parental occupation and the precise nature of the child’s disability), and reports of personal experiences and the practical issues surrounding care (positive and negative elements, coping styles, views on how caring could be aided, and the capacity to manage the child’s social functioning, such as mixing with others, and behavioural difficulties, such as mood swings).  This measure also assesses the level of satisfaction with the support services available. 

 

The results were described as in line with existing trends in that (internalised) subjective strain was the most pervasive ... supporting the view that carers of children with learning disabilities tend to experience less strain from actual (behavioural) problems and more from what they feel about the circumstances. 

The most frequent comments from this sample of parents concerned the emotional aspects of their role while referring, too, to the need for effective support provisions. 

 

Further analysis indicated individual variance in the extent of the strains experienced with some participants “buffered” by the support from partners or other family members. 

The concept of family cohesion as an important element in resilience was reinforced as a means of countering the ongoing sources of stress, such as seeking to balance the caring role with employment outside the home, uncertainty about the future, and a sense of restriction upon day to day lives. 

 

It was also noted that the participants used both emotion-focused and problem-focused strategies by which to manage the demands upon them.  Most appeared to have a realistic perception of the child’s needs and sought information about the condition ... both likely to add to a sense of coping ... but the present authors commented that it was alarming to hear the frequent reports of a lack of appropriate information for parents at the time of the initial identification of the disability and thereafter. 

 

They cite converging evidence that it is important for positive coping among parents to understand the nature of the condition, the prognosis, and the implications, alongside their maintaining positive perceptions of the child and the general family circumstances, and continuing to have access to social and recreational activities.

 

In this regard, there was little evidence to support a view that the caring role involves a burden upon the family or that there is a significant element of pessimism in the way in which parents perceive their situation.  The current results indicate that this is by no means necessarily the case ... even allowing for the reported lack of support services in the region.  Difficulties were balanced by positive aspects of caring such as being able to form a bond with the child, and to develop greater creativity in, and personal fulfilment from, successfully managing the various demands. 

 

The authors conclude by recognising how the Irish culture tends to emphasise strong societal and religious norms which may underlie a kind of stoicism and a lower level of support-seeking; but it was still the case that satisfaction with support services was generally low, with reference to largely absent language therapy, occupational therapy, and physiotherapy, and only limited support from community nurses, psychologists, and respite services. 

 

Their implication highlighted the need for expansion in such provision, to provide the information and practical support necessary to reinforce the parental confidence in their ability to cope and their resilience against stress. 

 

(The present writer – MC – would infer also that, while caution is needed to generalise the above findings to different settings, the general pattern of results highlights the significant difficulties that may be associated with the care of a child with a disability such that a significant role of support professionals is to cooperate in assessments which cover the members of the family as a whole ... their overall needs and what is required in order to minimise stressors and to maintain resilience ... rather than focusing upon the profile of strengths and weaknesses in the child.

The common assessment processes which are being established may well increase the efficiency of deploying services, and of highlighting significant gaps in services, but there may still be relevance in the concept of a named person to act as a coordinator of information and as a first point of contact, particularly in the period immediately after the identification of the disability.)

 

Emotional Dilemmas and Caring for a Child with a Learning Disability

 

The report by Rogers (2007) continues the theme of stress within the family and of the associated significance of ensuring adequate support, formal or informal, for the parents.

Her research concerned the impact upon the parents of the diagnosis of a disability in the child, the process of coming to terms with the situation, including possible denial, and the associated importance of feelings of being supported and socially accepted. 

 

Rogers’ introduction refers to the current atmosphere in which government literature

(and media coverage) highlight “parenting” and provide examples of positive and negative processes as likely to increase pressure on parents or, at least, to direct attention to the challenges involved in being a “ good parent ” or in rearing the ideal child.  

Meanwhile, expectations concerning the birth of a child, and the subsequent parent-child interactions, may have to be modified when the child is identified with a learning disability; and the challenges faced by these parents will be greater still and beyond previous (real or idealised) anticipation or expectation.

 

To explore the emotional dilemmas that parents may face, Rogers carried out a series of interviews, in some cases with more than one session, with a sample of parents (24) in the south of England.

 

All the parents had at least one child with one or more formal diagnoses.

The diagnostic categories included ASD, Asperger syndrome, Down syndrome, cerebral palsy, ADHD, speech/language disability, dyspraxia, and emotional/behavioural difficulty.

The issues included the parental experience of the education process, educational provisions, the assessment of special educational needs, the procedural difficulties encountered, and the general impact of these processes upon the family as a whole.

 

In respect of discovering the difference or disability, the comments here reinforced existing data to the effect that the emotional impact of learning that the infant has a disability is far greater than the upheaval that would ordinarily follow the arrival of a new baby.

 

Where parents already have a child with significant needs, and a second child is identified as beginning to show similar needs, the emotional reaction is likely to be all the stronger (with the need to come to terms with the anticipated demands and the uncertainties or anxieties about the future, as well as the sadness about the non-fulfilment of the aspiration to have a child with no developmental difficulties).

 

These reported feelings were said to reflect the views of Beck and Beck-Gernsheim (1995) who suggested that having a child is linked to feelings of becoming “rooted” and of life becoming more meaningful and satisfying as a result of the close relationship with the child. 

 

Rogers, who has a daughter with learning disability, recognises the process of replacing prior hopes and expectations with modified ones based upon the new experiences of providing for a child with significant needs; and she describes how she pondered over what it would be like to have a child with no disability, and regretted the lack of experience of “typical” issues such as confrontations over homework or about demands for more independence and teenage contrariness. 

In other words, it is the subjective strain which may be most significant ... the realisation that there will not be the opportunity to share an ideally normal parent-child relationship.

 

In respect of any tendency towards denial, reference is made to Cohen (2001) who described the common experience of vacillating between the acceptance of the diagnosis and reluctance to come to terms with it, before eventually accepting the situation and the associated implications (including treatment needs).

 

Rogers cites the initial sense of loss described by two parents following a diagnosis of Down syndrome in their child, and feelings indicative of both shock and denial, not because of any real failure to accept the validity of the diagnosis, but as a means of  filtering and gradually acclimatising to the news. 

 

She argues that these reactions are common when faced with a diagnosis when the child is born, but may also arise when a diagnosis is made at a later stage in the child’s life.  Any denial acts as a kind of emotional buffering as illustrated (Cohen 2001, op cit) by placing the disability into a less severe category on the part of parents who cannot yet face the full meaning and implication of the diagnosis.

It is accepted that the child has a difficulty but not that a learning disability is involved.

 

(Rogers’ own reaction was a relatively long-term denial that her daughter’s learning difficulties were anything more than dyslexia .... not that one would or should underestimate the significance of this problem, but dyslexia was perceived as somehow more acceptable and as having more optimistic outcomes than a global learning disability.)

 

Initial reactions may be emotionally defensive, as in the case of not accepting, or actively denying, the severity of the condition, and could usefully be seen as not simply a matter of sweeping aside the diagnosis (with the implication that the parents cannot manage the circumstances they face) but as a positive response to allow the gradual “filtering” of the information, and working towards an acceptance of the situation. 

 

Mental health issues are said to surround anxieties about the nature of the diagnosed disability, and uncertainty about the future, as illustrated by the frequency of parental questions (reported by Baldwin and Carlisle 1999), about milestones and transitions such as starting school, or moving from one school level to another.

 

Among the participants in this current survey, a consistent theme was the level of expected and actual support available ... and the significance for the parental well-being of being able to call upon support services during stressful periods.

In particular, the support a parent believes to be available form family members and friends can have significant impacts upon their coping strategies, emotional security, and sense of autonomy.

 

However, it is not just a matter of assistance in gradually accepting the implications of the diagnosis, but there may be practical issues as well. 

Reference is made to one parent in the current sample whose child presented with behavioural difficulties of an externalising and aggressive type towards his siblings, and her sense of inability to cope plus growing depression. She was unable to have a normal relationship with the children when this child was present, and respite care was sought to enable her to break into the vicious cycle that was being established

Rogers points out that this action did not reflect any true animosity towards the child himself, but to the behaviour, and the need for respite was a matter of the day to day practical difficulties.

 

In another case, the absence of such support was seen as critical in that the mother described herself at breaking point, was on anti-depressants, and perceived herself as so poor a mother that the children might well be better off without her.  This state had been reached, it appears, because the condition of the child was associated with emotional and behavioural difficulties.  He had been excluded from school, and was in trouble with the law. 

 

The implication drawn from this account, and from the finding that parents who had never sought support or experienced significant stress or depression all had children over the age of 11, was twofold.

 

Firstly, it was suggested that emotional stressors appear to be more marked in the early years of a diagnosis, or that parents develop strategies over time to manage the practical difficulties (which would reinforce the view that a critical period for parents follows the initial diagnosis during which the provision of information and an awareness of how to access support are very important).

 

Secondly, it was noted that those parents who do gain emotional and practical support are more able to deal with the day to day demands and pressures. Conversely, the parents whose emotional responses were most intense were those who felt unsupported, perhaps seeking to manage as a single parent, and whose child had behavioural difficulties in addition to the learning disability. 

 

In her conclusion, Rogers suggests that internalised beliefs about what constitutes normal development and behaviour, plus social pressures about parenting and the means of producing “perfect” children, put parents under great pressure. 

Acceptance of the child’s difficulty is recognised as a process which may take some time, but this is not indicative of some failing ... on the contrary, it is a likely response to the necessary shift in aspirations or expectations, with some initial denial of the existence or level of the disability acting as a mechanism for gradually coming to terms with the situation.

 

It is further recognised that emotional responses indicative of stress or anxiety or conflict may re-occur.  What is important is that professionals recognise the impact upon the parents of a diagnosis of a disability in the child, which can have negative effects for all members of the family and underlie periods of dysfunction during which the parents see themselves as unable to cope.

The implication, again, is for the availability of assistance, in terms of information, advice, practical help and emotional support, to match the overall family circumstances, thus to increase the probability that acute feelings of stress or powerlessness will be short-lived and resilience maintained. 

 

(The present writer – MJC – notes how parents [ such as those participating in Early Bird groups concerned with young children diagnosed with autism ] have frequently described as helpful and reassuring the opportunity to meet similar others and to share experiences and anxieties and ideas.  The implication would be that of devising ways and means of continuing to facilitate parent groups where, whatever the planned agenda, the opportunity is afforded for informal interactions and mutual support among the parents.)

 

Children with ASD in Mainstream Schools : Parental Perceptions

 

In introducing his survey of parental opinions and concerns, Whitaker (2007) refers to the increasing move towards the mainstream inclusion of all children with special educational needs.  This refers equally to children with ASD, although their difficulties in communication and interaction, and idiosyncratic behavioural styles

(as set out by Jordan and Powell 1995) will present significant challenges, including a need for direct teaching of social skills, plus seeking to anticipate and compensate for the range of potentially stressful experiences such as sensory overload, or difficulty in becoming accepted as part of a group.

 

Thus, whatever the ideals of inclusion, there remains some debate about the practicality of inclusion.

Meanwhile, parents have the right to express preferences about the educational provision for their children as part of the planning process shared with teaching staff and other professionals.

 

In respect of parental attitudes, Whitaker cites existing survey findings which demonstrate variance according to the characteristics both of the chid and of the parents.  One variable is the level of the difficulty experienced by the child with some parents favouring inclusion for children with relatively severe disabilities, and others favouring inclusion for children with relatively mild disabilities.  Parents with a higher level of education themselves tended to favour mainstream inclusion.

 

A study by Kasari et al (1999) is cited as highlighting the impact of the nature of the diagnosis, autism or Down syndrome, upon parental perceptions of inclusion.

These authors reported a trend whereby parents of children with Down syndrome were more likely to prefer inclusion of their children in mainstream classes than were parents of children with autism.

 

The only (published) pieces of research in this country concerning children with ASD have been completed by members of parent organisations (see, for example, Batten et al 2006); and Whitaker summarised the findings as indicating serious concerns among parents whose children, identified with ASD, attended mainstream schools.  Satisfaction among parents attending autism-specific schools was much higher than among parents of children in mainstream schools. 

 

Whether or not these findings based upon the views of parents already members of specialist groups/organisations can be generalised across all parents of children with ASD is open to debate since the very action in joining the group may reflect particular needs and experiences; and reference is made to the work of Mandell and Salzer (2007) in the USA who found that parents of children with more complex and challenging difficulties associated with their autism, and not easily accommodated in mainstream schools, were the more likely to join support groups.

 

 The survey completed by Whitaker himself focused less upon what parents perceive as ideal and more upon actual experiences and perspectives concerning the educational provision, with some exploration of the factors underlying varying levels of satisfaction.  The target sample (of whom 172 completed questionnaires ... a return of 49%) was drawn from parents in the author’s county whose children were being educated in regular classes within mainstream settings rather than of those in specialist units attached to mainstream schools.

 

Of the 172 parents, just over 60% described themselves as satisfied or very satisfied with the provision.  This was seen as encouraging, but a number of caveats were set out ...

• The number of parents or carers expressing dissatisfaction (nearly 40%) was a substantial minority with very real concerns about the quality of provision
• Levels of dissatisfaction among the parents of mainstream-placed children were much higher than those of parents whose children were in specialist schools or units
• Even some of the parents who reported satisfaction still identified issues of significant concern
• In itself, a parental expression of satisfaction does not guarantee that the child’s needs are actually being addressed appropriately.

 

It was noted from a further analysis of the responses that parents of children with a Statement of Special Educational Need (through which additional resources may be accessed) tended to be more satisfied that parents of children without a Statement ...

... (and one may ponder whether this is concerned with a feeling of reassurance about agreed provision given the issuing of a formal and binding document).

 

Parents were invited to select, in rank order of perceived significance, the three issues they considered to be priorities for the children or for themselves.

 

The analysis indicated that the following issues were the most frequently cited :

• The young person’s progress in social skills
• The level of understanding among the staff of the individual needs
• The capacity of staff to manage the behaviour
• The level of structure available
• The child’s happiness in the school setting.

 

These priorities were much the same for the two sub-groups of parents (those reporting overall satisfaction or dissatisfaction) although there was observed to be a significant difference in respect of the importance attributed to the child’s happiness in that this was the major concern among parents expressing dissatisfaction, but markedly less so among the other subgroup. 

Whitaker interpreted this as indicating that the latter parents were no less concerned about happiness, but took it as a given and a prerequisite for all else that the child should be happy at school.  Meanwhile, it was suggested that the dissatisfied parents took the apparently lower level of happiness among their children as a marker for a failure to address the needs. 

 

Continuing this theme, Whitaker highlighted a number of shared aspirations and wishes for their children on the part of the parents.

 

The first was that of access to a setting where the needs and characteristics associated with ASD are understood.  The two subgroups of parents could clearly be differentiated in their acceptance or rejection of the statement “ Most staff understand my child ”.  

A large majority of the parents who expressed general dissatisfaction disagreed with this statement, while most of the other sub-group agreed; although, even among this latter group, there were still concerns and criticisms expressed by around half of the participants.  In other words, the matter of a (lack of) understanding by staff was a significant source of anxiety.

 

In response to questions about what the parents would like to happen or about what the staff should do, reference was made by around 25% of the whole group to the use of appropriate teaching and management strategies ... something which was perceived to be linked to the level of staff awareness of the child’s idiosyncratic needs. 

 

However, Whitaker described it as “striking” that the comments in this section indicated very modest expectations from parents in that, for example, it was commonly accepted that mainstream staff would not have expert knowledge of autism-specific approaches; and, apart from direct work designed to enhance social skills, there was no expectation that the curriculum should be modified greatly to take account of the ASD characteristics.  

 

Some of the participants, among those expressing general dissatisfaction, also referred to their anxiety lest positive academic performance would lead to teacher expectations of equally positive performance in other domains.

 

A large number of participants, from both sub-groups, contributed to this general theme in regarding as important that staff should have an awareness of what lies behind the behaviours and styles presented by the children and young people with ASD, and the challenges for both the ASD pupils and the staff.

For example, references were made to a perceived tendency among staff to attribute blame to the child for any challenging behaviours, and to respond with disciplinary measures seeking to foster conformity. 

 

(The implication, one could say, is for a functional assessment of behaviour, but the difficulties of implementing this in a mainstream school setting are recognised.)

 

As implied earlier, a high priority was placed upon the goal of positive peer interactions, and the promotion of relationships and social skills. 

The typical comments from the parents highlighted the limitations in that only half of the children and young people were said to have friends, and only around 20% were even accepted by peers.  In common with other findings, it was noted that the unstructured breaks and lunchtimes were a particular source of problems, including bullying. 

 

The aspiration of parents was often little more than having their children exposed less to these unstructured situations and to receive a higher level of supervision. However, some parents argued that schools should be more proactive in promoting peer awareness of ASD and acceptance of the children so-diagnosed.

 

In respect of home-school relationships, it was noted that the two sub-groups of parents could, again, be clearly differentiated in that the quality of the communication was linked to the overall satisfaction expressed. 

Where satisfaction was high, parents frequently made specific references to good communication with staff, and their willingness to listen to, and to take seriously, parental concerns as a particularly helpful element of the school’s arrangements.  Highly valued was the staff’s willingness to tap the parental knowledge and experience when seeking to deal effectively with issues arising at school. Appreciated, too, were any attempts to meet the specific needs and to be flexible in their management and teaching styles.

Among parents generally dissatisfied, communication was commonly a source of concern.

 

In his summary and conclusion, Whitaker holds that the numbers of children identified with ASD, and the heterogeneity of the individual needs must be recognised when educational provision is planned or reviewed.  A continuing range of provision will be required to match the range of needs.  

 

While it may be the case that children attending mainstream school present with high-functioning autism, or may be seen as only mildly disadvantaged, there is still likely to be a complexity of need, exacerbated by anxiety surrounding their awareness of difference but uncertainty about how to modify the situation which may underlie the development of significant mental health problems. 

 

The implications include the provision of resources and ongoing training to maintain staff knowledge of ASD needs, and their capacity to provide for them. There is also the issue of promoting the inclusive ethos of the schools and full acceptance of responsibility for meeting the needs presented via a flexibility of approaches.

 

The worry is that the latter aspiration may be somewhat at odds with the continuing emphasis on the “ Standards’ Agenda ” linked to market forces and pupil admissions, and  judgements of school success (which emphasise the numbers of pupils achieving a given standard in national tests and examinations). 

The tension between inclusion and market forces is highlighted, although it is Whitaker’s hope that a school’s willingness to provide for the complex and often challenging needs of children with ASD will be an indicator of the school’s sensitivity to, and appropriate management of, the educational experiences of all pupils with special educational needs. 

 

                              *          *          *          *          *          *          *

 

M.J.Connor                                                                                            February 2008

       

 

REFERENCES

 

Baldwin S. and Carlisle J.  1999   Living with disability; the experiences of parents and siblings.   In G. Allen (Ed) The Sociology of the Family   Oxford : Blackwell Press

 

Batten A., Corbett M., Withers L., and Yule R.  2006   Make School Make Sense.  London : National Autistic Society

 

Beck U. and Beck-Gernsheim E.  1995   The Normal Chaos of Love.   Cambridge : Polity Press  

 

Brannan A., Heflinger C., and Bickman L.  1997   The Caregiver Strain Questionnaire.   Journal of Emotional and Behavioural Disorders  5  212-222

 

Cohen S.  2001   States of Denial.   Cambridge : Polity Press

 

Jordan R. and Powell S.  1995   Understanding and Teaching Children with Autism.

Chichester : Wiley

 

Kasari C., Freeman S., Bauminger N., and Alkin M.  1999   Parental perspectives on inclusion.   Journal of Autism and Developmental Disorders  29(4)  297-305        

 

Kenny K. and McGilloway S.  2007   Caring for children with learning disabilities : an exploratory study of parental strain and coping.   British Journal of Learning Disabilities  35  221-228

 

Mandell D. and Salzer M.  2007   Who joins support groups among parents of children with autism ?   Autism  11(2)  111-122

 

Rogers C.  Disabling a family ?  Emotional dilemmas experienced in becoming a parent of a child with learning disabilities.   British Journal of Special Education.   34(3)  136-143

 

Whitaker P.  2007   Provision for youngsters with autistic spectrum disorders in mainstream schools : what parents say, and what parents want.   British Journal of Special Education  34(3)  170-178 

 

White N. and Hastings P.  2004   Social and professional support for parents of adolescents with severe intellectual disabilities.   Journal of Applied Research in Intellectual Disability 17  181-190