Parents do not expect the state or society to take over their responsibilities. They are prepared to make whatever sacrifices are necessary, but with the best will in the world they cannot do it from beyond the grave. (Quote from a carer, Department of Justice, Equality and Law Reform, 1997)
The birth of a child with a learning disability may have a profound effect on the family, often requiring one or both parent(s) to adopt the role of carer. Traditionally, research has focused on assessing the nature and extent of the stresses, or ‘burden’, imposed on parents by the many, and often complex, demands of caregiving (e.g. Shearn and Todd, 2000). More recently, researchers have turned their attention to the coping strategies used by carers (e.g. Hastings and Taunt, 2002). Our study integrates both perspectives by assessing: (1) caregiver strain among parental carers of children who are under 18 with a wide range of learning disabilities; (2) the practical aspects of caring and service supports; and (3) coping strategies including a qualitative assessment of factors influencing coping ability.
Thirty-two parental carers of children with learning disabilities (aged 28 to 57 years) (mn: 44years) were recruited from the friends and acquaintances of the first author (KK) who is also the mother of a 16-year-old girl with a moderate learning disability. All were living in the Greater Dublin area. Each parent completed the Caregiver Strain Questionnaire (CGSQ) (Brannan et al, 1997) which assesses objective and subjective caregiver strain. The former refers to observable events or occurrences that pose difficulties; the latter is sub-divided into internalised subjective strain (eg. worry, sadness) and externalised subjective strain which relates to negative feelings (eg. anger or resentment) experienced by the caregiver toward the child or his/her behaviour. The areas assessed by the CGSQ include: disruption of family life and relationships; time demands; effects on health; financial strain; disruption to social/community life; and worry and guilt.
Participants also completed a Carers Questionnaire adapted from previous work involving the second author (McGilloway et al., 1995). This was used to obtain information on background (e.g. employment); the practical aspects of providing care; service satisfaction; and coping strategies. It also comprised two open-ended sub-sections in which respondents were asked to describe the positive and negative aspects of caring, how they cope and ways in which they think caring could be made easier.
Participants were predominantly female (75%, 24/32) married and from a wide range of socioeconomic backgrounds. Half were in employment outside the home, while most of the remainder had ceased employment in order to care for their child. Their children with learning disabilities were aged between 2 and 17 years (mn: 11 yrs), most were male (19/32) and all had other siblings. Approximately one in five (7/32) had a diagnosis of ‘mild’ learning disability (IQ score 50-70); more than one in ten were (4/32) classified as ‘severe’ (IQ score 20-34). A substantial proportion (44%) had concurrent physical disabilities.
Almost three-quarters of participants (23/32) were worried about their child’s future; almost one-third (10/32) felt tired or strained as a result of their child’s difficulties; whilst more than one in five (7/32) indicated that the child’s difficulties had taken quite a toll on their family. High levels of strain overall were recorded, with participants reporting more internalised (mean score 2.9 out of 5) than externalised strain (mean = 1.6). Thus, their negative feelings about their caring role imposed the greatest strain on their lives. The predominance of females precluded the possibility of examining gender differences, while an analysis by age indicated no differences in total caregiver strain between younger and older participants, nor were there any differences between parents of children with and without physical disabilities.
Practical aspects of caring
Parents reported most difficulty in helping their children to manage money, shopping and interacting with others. Problem behaviours such as poor concentration, restlessness and mood swings were also reported by participants to be the most difficult to manage. On balance, the distribution of scores indicated that participants tended to experience more difficulty dealing with the practical or social care tasks than managing problem behaviour.
All participants derived considerable support from their spouses/partners, their other children, friends and other parents (Table 1). A substantial proportion of them were in contact with a social worker, although only one-third were satisfied with the support received. Similarly, most of the smaller number of people who were seeing a community nurse or psychologist were dissatisfied with the support provided (Table 1). The overall picture emerging from these findings is one of relatively low service provision, compounded by generally low levels of satisfaction with formal support for their child and themselves.
The parents used a range of coping strategies. For example, more than two-thirds (21/32) actively sought professional support when required. Only three of the thirteen parents who were given information at the time of their child’s diagnosis were satisfied with the information provided, while more than half (19/32) also felt that they had insufficient information about their child’s condition as he/she was growing older. Importantly, all but three participants took part in (and valued) regular or occasional family activities and most (26/32) also had hobbies or engaged in activities on their own. More than two-thirds of the parents (22/32) felt that their child would not be able to cope with his/her life and a similar proportion indicated that appropriate support systems would be unavailable for them in the future. Twenty participants expressed concern that there would be no one to look after their child when they were old or had passed on, whilst 13 stated that they tried not to think about the future. Almost half of the participants (14/32) reported that their lives were restricted by their caring role.
The responses to the open-ended questions were examined to identify key themes and messages relating to parental coping. Unsurprisingly, parents spoke about profound changes in their lives as a result of caring for their child. However, the positive changes which caregiving had brought to participants’ lives was a major theme, and this, in turn, had helped them to cope better. For example, many parents expressed a deep personal bond with their child which they felt was unlike any other. They also described the joy which their child had brought to them and to others:
She seems to bring out the very best in people, even the hardest and the ‘coolest’!
(Parent of two-year old without diagnosis)
My daughter is not a burden. She is a positive influence on my life.
(Parent of 15-year-old with moderate learning disability)
The collective findings suggest that parents became less judgmental, materialistic and selfish than before their child was born—more confident, open and honest, and more appreciative of:
‘the little things in life’. For example, four respondents felt that they had become more optimistic and that they smiled and laughed more. Others pointed to their realisation of how much they could do to help their children reach their potential, thereby exploiting their own talents. This is illustrated well by the comments of one father who described caring for his daughter as:
…a true test of my capacity—to refuse to accept any problem without finding a solution.
(Parent of two-year-old with mild learning disability)
However, almost one-third of the participants commented at length on the negative aspects of caring. This is illustrated most poignantly by the following:
While looking out for our son all the time is a constant strain, there is an intangible satisfaction derived from feeling constantly involved in his progress, welfare and prospects. This, however, is clouded by the realisation that we cannot look out for him forever as we get older
(Parent of 17-year-old with moderate learning disability)
Another key theme revolved around societal and governmental attitudes toward young people with learning disabilities. For example, 8 parents expressed disappointment in the manner in which their child was treated by the government and by society in general. Clearly, the lack of tolerance or understanding among the public of children with intellectual disabilities was a source of considerable frustration:
I do not feel that society in general, as personified by government policies, values my son, or can conceive that he could have any valuable part to play in society.
(Parent of 17-year-old with moderate learning disability)
The third theme to emerge from the data related to formal service provision, which was perceived as being generally inadequate. Four parents criticised the lack of partnership between government departments in planning interventions and the concomitant lack of funding to provide appropriate and effective services for their children. One mother summed it up:
Trying to cope with inadequate health care resources is far more stressful and frustrating than trying to cope with any aspect of my son’s special needs.
The hardest thing is having to fight so hard for the resources he needs—the boxing gloves can never come off!
(Parent of 6-year-old with moderate learning disability)
Some parents alluded to the need for special needs teachers and for one-to-one classroom assistance, while almost one-third suggested that well supervised and suitable youth activities were needed as a social outlet for their children. Four parents expressed a need for respite care, while a substantial proportion required access to speech therapy and/or occupational or physiotherapy services. Improved communication with, and empathy from, medical staff was identified as an important way in which parents could be enabled to cope better as well as gaining greater access to essential services and equipment:
…in our experience, the professionals still operate out of a medical model, i.e. they know best and don’t take parents’, and indeed clients’ views into account when planning services and/or interventions.
(Parent of 10-year-old with severe learning disability)
Parents also felt that automatic access to entitlements such as Domiciliary Care Allowance (DCA) and medical cards would be beneficial, while one-quarter reported that access to home support services would also enhance their lives.
A final sub-theme related to the amount and quality of information provided to parents. Almost two-thirds (19/32) of participants felt that more information was essential, not only at initial diagnosis, but also to help them and their children face the challenges presented at different stages throughout their lives. More information from, and better communication with, schools were also identified as a means of enhancing parents’ lives and improving their ability to cope. One mother indicated a need for better:
…education of medical staff and population at large who have preconceived and largely wrong ideas of what my child is capable of. This also includes educators who at times impose limitations on my child’s ability that I would never impose.
(Parent of 9-year-old with mild learning disability)
Some Concluding comments
This study is limited by a relatively small sample size, a predominance of female participants and an incomplete treatment of the full range of coping strategies. Additionally, participants were selected from friends and acquaintances of the first author (KK), although there was no evidence that this had unduly influenced data collection or analysis. The results are consistent with comparable research conducted elsewhere (eg. Beresford, 1994; Redmond and Richardson, 2003), thereby suggesting fairly good generalisability, although the above limitations should nonetheless be kept in mind.
Clearly, the parents in our study were exposed to a range of well known potential stressors, such as difficulties in dealing with social and practical care tasks, uncertainty surrounding the future care of their child and a feeling of restriction on their everyday lives. The higher levels of internalised subjective strain seen in our study indicate that carers of children with learning disabilities—when compared to carers of adult relatives—tend to experience less strain from problem behaviour and more from how they feel about their caring experience. This is supported by our qualitative data in which participants made relatively few allusions to the practical demands of caring, despite the fact that a substantial proportion had difficulties in managing some everyday ‘social’ tasks and, to a lesser extent, problem behaviours. Instead, participants spoke often (and poignantly) about the emotional aspects of parenting a child with a learning disability while acknowledging the need for effective and appropriate service provision.
The parents employed several coping strategies to help them deal with their caring role. Most appeared to have a realistic outlook of their child’s disability and actively sought information about their condition. Further forms of adaptive coping included caregivers’ positive perceptions of their child (and his/her impact on the family), their regular engagement in hobbies/pastimes, and the largely favourable perceptions of their own life situation. Many also appear to have benefited from the ‘buffering’ effect of the emotional and social support received from their spouses/partners and families. This high level of family cohesion and togetherness has been previously identified as an important coping mechanism for all family members (e.g. White and Hastings, 2004). The fact that more than three-quarters of the participants were receiving support from other parents may also have been beneficial as building relationships with others in a similar situation has been found to be a key indicator of coping ability among carers (Solomon et al., 2001).
Most importantly of all, perhaps, is the finding that there can be positive and potentially rewarding aspects of providing care for a child with a learning disability irrespective of class boundaries, age (of parent or child), and the type and degree of the child’s disability. The negative connotations of ‘caregiver burden’ imply that parents view their caring role pessimistically. However, our data show that this is not necessarily the case, despite continuing deficiencies in support services for carers of children with learning disabilities in Ireland. While there was clear evidence of caregiver strain, most participants were satisfied with their lives, many employed effective coping strategies and almost all had realistic expectations for their children and their future. However, this must be balanced by parents’ concerns about their child’s future and the perceived lack of effective services (e.g. psychology and community nursing) and/or inappropriate use of existing services—both of which may have a detrimental impact on overall coping ability and perhaps, ultimately on the quality of life of the child. Furthermore, the lack of appropriate information for parents, from initial diagnosis and beyond, is alarming and something that should be tackled at grassroots level sooner rather than later.
Unfortunately, it would appear that much more is required for carers, despite dramatic improvements in the Irish economy and increased recent investment in daycare and residential services for people with learning disabilities. Arguably, Ireland’s recent hosting of the World Special Olympics has gone some way toward changing societal attitudes and perceptions. However, considerable work is needed to translate this into increased funding and practical ‘on-the-ground’ help and support for parents who must cope with the demands of providing, often fulltime, care for a child with a learning disability.