COMPLETED RESEARCH

Adult sons and daughters with a disability

Invisible Carers: Facing an Uncertain Future (2003)

Llewellyn, G., Gething, L., Kendig, H., & Cant, R. (May 2003). University of Sydney. Report of a study conducted with funding from the National Health and Medical Research Council, 2000 - 2002.

Background

An estimated 3000 older parents in NSW are caring for an adult son or adult daughter with a severe or profound intellectual disability. This number will grow exponentially over the coming decade. The state relies heavily on the care these older parents provide. However these parents cannot continue caring indefinitely. Twenty, thirty or forty decades of care take a toll - physically, financially, socially and emotionally. A crisis looms.

The experiences and insights of these parent-carers have long been ignored. This study sought to understand their perspectives - critically important to any attempt to provide services that older parent-carers will use and find useful. Older parent-carers3 begin caring as new parents and will continue to do so for five or six decades, unless prevented by death or their own disability. Their caregiving is virtually a life-long 'career' and it is a radical departure from the normal experience in which dependent children develop into independent adults. There is a wealth of knowledge in their caring careers that needs to be made publicly available to inform policy, service development and professional practice.

The study was set against the background of a rapidly ageing society. The number of people with a severe or profound handicap is increasing - and for most (82%) the main provider of assistance with self-care activities is an informal carer, usually a resident in the same household4. People with a disability are getting older and so are their primary carers. Around 10% of the primary carers aged 65 and over (approximately 9,700 Australia wide) are older parents caring for their now adult children. Around 40% of all primary carers in Australia have been in their caring role for at least 10 years. Of these, around 13% have been in the caring role for at least 25 years. Most of these long-term carers are parents of adults with intellectual disability. Their time involvement in caring is substantial; for carers caring for 25 years or over, half (50.2%) spend no less than 20 hours a week caring and the majority of these carers (76.2%) spend over 40 hours a week devoted to caring activities. Their caring is a life long experience substantially benefiting society by caring for their family members who in previous times would have been placed in institutions.

Aim

This study aimed to understand the lifetime caring experiences of older parent-carers of adults with intellectual disability and the factors that influence their patterns of service use.

More specifically it sought to:

  • Identify ways in which caring relationships are influenced by personal biographies and adapt or are stressed by health status, support networks, direct care load, perception of caregiving difficulties, coping strategies and attitudes towards and willingness to engage with services.
  • Document reasons why parent caregivers do or do not use services currently, their views on their service needs in the future, and reasons why parent caregiving comes to an end.
  • Identify service providers' perceptions of reasons why older parent-carers do or do not use services and contrast their perspectives with those of the parent caregivers.

Method

A narrative approach that adopted in-depth interviews with 64 older parents drawn from the northern region of Sydney provided the central research strategy of the study.

A parent-caring biography was developed for each participant detailing their broader experience of parent-caring relationships and inter-relationships with family, friends, formal services and the wider community. Close attention was paid to critical events and decision points described by participants over their parent-caring career. Quantitative data on these older carers' health status, support networks, usage of health services, perceptions of the difficulties associated with caregiving and coping strategies was also gathered. A typical parent-caring biography was then subsequently constructed.

Three focus groups were also held with service providers to gauge their perspectives on the issues faced by older parent carers of adult children with intellectual disability.

Findings

A typical older parent-carer biography emerged, showing:

  • Parents who acted strongly against attitudes of rejection, segregation and institutionalisation of their young disabled children and who consequently developed equally strong protective parental responses
  • Parents who, after struggling to get information or to locate somebody who would help their child and provide hope of a more positive future, often managed alone
  • Parents who became experts on their child yet were faced with professionals who were not intimate with the family and who considered parents' expertise to be secondary to their professional wisdom
  • Parents who were faced with particular challenges relative to the life stages of themselves and their child
  • Parents who were operating in a changing (over time) and uncertain policy climate
  • Parents who by and large, were satisfied that they had achieved a job well done
  • Parents whose embedded sense of parental control and as protectors of their children was being destabilised by their own ageing and the ageing of their children. The area of greatest worry for many of the older parent-carers was the safety, health and well-being of their adult children when they would not be directly under their care.

Most Common and Stressful Difficulties

The most common difficulties experienced by these parent-carers and the coping strategies they most frequently used and/or found helpful were as follows:

  • The physical demands of caring (53%)
  • Feeling helpless/not in control (45%)
  • Professional workers seemingly nor appreciating the problems carers face (41%)
  • The problematic behaviour and the excessive demands of their adult child (over 30%)

Interestingly, in spite of these difficulties, participants overwhelmingly expressed positive feelings about their relationships with their adult son or daughter and a high level of satisfaction to be gained from their caring role. Moreover, as age increased study participants were more likely to report better mental health as well as lower levels of stress related to their emotional reactions to caregiving and to the restrictions imposed by caregiving on their social life. The findings overall did not support the common perception that caring for an adult son or daughter with intellectual disability is overwhelmingly burdensome.

Most Common and Helpful Coping Strategies Employed

By far the most common coping strategy was 'relying on your own experience and the expertise you have built up' (97%). In a similar vein, 88% of parent-carers identified 'believing in yourself and your ability to handle the situation' as a helpful coping strategy. Over 80% of participants also demonstrated a heavy reliance on cognitively reframing their life situation to be more 'acceptable' than it might otherwise seem. In contrast, 'getting as much help as you can from professionals and other service providers' and 'getting as much practical help as you can from your family were perceived as helpful by 58% and 48% of parent-carers respectively. Thus self reliance, whether by choice or by necessity, was seen to be the norm for study participants.

Health Status of Older Parent-Carers

The study also examined the health status of these parent-carers, and their use of health care services by comparison with their age-peers. Overall, study participants were shown to have significantly poorer physical and mental health. Specifically, the youngest group of participants, those aged 55 - 64 years, reported significantly worse mental health than the Australian normative population. Lone parent-carers were also seen to experience particularly poor physical health, whilst those 69+ years reported better mental health. Parent-carers with locally integrated support networks experienced better mental health, whilst parent-carers of adult children with higher care needs and/or who spend more time at home suffered poorer mental health.

Engagement with the Service System

Older parent-carers could be grouped into one of four categories, pending their engagement with the service system:

i. Go It Alone (24) - these parents identified strongly as being responsible for determining their adult child's life situation and used health/welfare services as an adjunct to support this responsibility as needed
ii. Reluctant Users (13) - these parents were more intensively involved with the service system, yet dissatisfied with their unwilling dependence on agency support
iii. Tandem Partner (9) - this group of parents negotiated satisfying life situations for themselves and their adult children, based on a shared understanding with service agencies and maintained by trusting and confident relationships with service workers
iv. Services in Charge (17) - these parent-carers have the lowest parental status, being 'divorced' from and outside any sphere of influence over their children's life situation. With all of their adult children living in residential hostels, group homes or semi-independently with agency support, agencies and service systems are in charge and regarded as the decision-makers.

Service Providers' Perspectives

Issues of concern raised by workers included:

  • The declining health and energy levels of older parent-carers raising anxiety and compounding difficulties
  • Parent values, beliefs and past experiences posing as barriers to service access
  • The socio-economic disadvantages faced by older parent-carers, particularly after a lifetime of caring for and supporting their now adult children
  • Older parent-carers having to negotiate a complex and challenging service system primarily designed to suit the needs of younger carers
  • Parents feeling betrayed by the 'system' which does not provide what they need
  • A complex, fragmented and alienating system resulting in late, delayed point of contact
  • Professionals not understanding older parent-carers' issues and concerns

Little consensus was had between the difficulties of caring as identified by workers and those identified by parent-carers. The most common factors identified by workers as causing the most difficulty were parents' feelings of guilt about their situation, professionals seemingly not appreciating the problems carers face, and parents not being able to devote enough time to other family members. Only on the second point was there some agreement with older parent-carers as to what was difficult and stressful.

The top five management items identified by workers showed a reasonable degree of consensus with those strategies identified by older parent-carers. These are included in the table below with the commonly identified strategies noted in italics.

Worker Identified Management Strategies Older Parent-Carer Identified Management Strategies
1. Realizing there's always someone worse off than me 1. Relying on my own experience and the expertise I have built up
2. Taking life one day at a time 2. Seeing the funny side of the situation
3. Remembering all the good times I used to have with the person I cared for 3. Realizing there's always someone worse off than me
4. Realizing that the person I care for is not to blame 4. Maintaining interests outside caring
5. Talking over my problems with someone I trust 5. Realizing the person I care for is not to blame

Table 1: Top five management strategies identified by workers and older parent-carers

Key Emerging Themes

  • Advancing age - physical and emotional tiredness; deteriorating health; anxiety over who will care for their child after they die
  • Duration of care - a lifetime of care by parents leads to financial interdependence and lives that are inextricably linked. Services however continue to identify the individual with the disability as the primary client rather than adopting a family centred approach
  • Lone carers - older parent-carers are more likely to be caring alone either through marriage breakdown or the death of their partner. Additionally, they face loss of support, through death or declining health, from family and friends
  • Distancing from professionals and the service system
  • Strong self reliance and reluctance to seek help
  • Decision-making for the future - for service providers, this entails the desire for older parent-carers to make concrete and detailed plans in the face of an inevitable future.

Recommendations

The interests of older parent-carers in the uncertain future are rooted in their strong parental identities established in response to earlier rejections of their children, their traditions of independence and personal responsibility and their experiences having their parental expertise overlooked or denied. The key factors that distinguish this group of older parent-carers challenge simplistic solutions to engaging these parent-carers in future planning (or at least in ways thought desirable by service agencies). For older parent-carers the question is who will look after my child and in the way that I have done?

The following recommendations are offered in the hope of forging a more positive and trusting environment to develop more certain futures for older parent-carers and their adult sons and daughters with intellectual disability. They are directly targeted to the larger group of older parent-carers continuing to care for their adult sons and daughters in the community. These older parent-carers are vulnerable and at-risk, if not in or approaching crisis situations. It is incumbent on government to ensure that they do not join the ranks of those older parent-carers already in crisis.

Recommendation 1
That the NSW government through the Chief Executive Officers of Human Services require:

  • All government and government funded services to incorporate a personal futures planning program for older parent-carers, their adult sons and daughters with a disability and other family members in their service offerings and,
  • Evaluate these personal futures planning programs against agreed best practice standards.

Recommendation 2
That the NSW government through the Chief Executive Officers of Human Services urgently address:

  • In the first instance the need for careful and empirically based planning to develop, in a timely fashion, the services required to support older parent-carers and,
  • Secondly the funding required to ensure a more certain future (accommodation, day services, health and personal care and someone to 'look out' for them) for the adult sons and daughters of older parent-carers currently living in the community.

Recommendation 3
That the future planning needs of older parent-carers and their families are given higher priority:

  • In the first instance by the Department of Ageing, Disability and Home Care giving equal policy, funding and service attention to older parent-carers currently caring for their adult so or daughter with a disability at home and,
  • Secondly by establishing a consultative process with older parent-carers and organizations which represent their needs to address the consensus finding in this study that professional workers do not seem to appreciate the problems parents face and develop information, training and resource strategies to overcome this.

Recommendation 4
That the health needs of older parent-carers be accorded higher priority

  • By identifying these needs in general medical practice and,
  • By ensuring the necessary community based interventions and supports are in place to reduce unnecessary stress on the physical and mental health status of older parent-carers.
>