The authors describe a context in which people labeled with intellectual disabilities are living longer and, as a result, are experiencing chronic illness. The World Health Organisation defines chronic illness as a disease of long duration, which generally progresses slowly. Studies focused on the psychosocial aspects of living with chronic illness have usually taken particular conditions as the starting point for research so, for example, there are studies that have considered the psychosocial impacts of living with diabetes, with cancer or with chronic pain.
However, the authors point out that little attention has been paid to the psychosocial aspects of chronic illness in the lives of people with intellectual disabilities within these studies.
Barriers to accessible information, alongside a lack of support for people with intellectual disabilities to attend screening tests and to self-manage symptoms suggest that people with intellectual disabilities experience disadvantage in their care compared with other groups.
The authors adopted a systematic review of the literature and after reviewing over 25,000 articles, they were only able to identify 4 articles that met their inclusion criteria. The inclusion/exclusion criteria are set out below:
- all intellectual disabilities and chronic illness diagnoses were included, ensuring searches were comprehensive
- experiences at any time point were considered, including pre-diagnosis (e.g.routine screening), diagnosis, treatment, self-management, illness-free periods, progression, survivorship, palliative care and end of life
- child and adolescent samples were not included
- work could be retrospective or current
- the reporter could be the individual with an intellectual disability or a proxy
- qualitative and quantitative studies were included
- studies were not required to use specific outcome measures or measurement tools.
(Flynn et al., 180).
The results are presented under six themed headings as follows:
- Delayed diagnosis
The authors describe participants’ experiences of delayed diagnosis and false reassurances from medical professionals. The authors suggest that this may be the result of ‘diagnostic overshadowing’ where health professionals assume that symptoms are the result of a person’s ‘intellectual disability’ rather than of a physical complaint.
- Information, Communication and Understanding
The authors found a general lack of accessible communication. The authors suggest that a combination of accessibly written information, pictorial aids and pain scales can help to bridge the information gap.
- Negative Psychological Consequences
Not surprisingly, given the lack of accessible information available, the authors found high levels of anxiety among people with intellectual disabilities living with chronic illness. The authors suggest that people with intellectual disabilities should engage in self-management strategies and express their emotions. However, they also suggest that “this may not always be successful within an intellectual disabilities population, it has been found that those with an intellectual disability may express emotions in an unfamiliar way (Adams and Oliver, 2011)” (Flynn et al, 2015: 185).
- Negative Physical Consequences
The authors found that the participants were also living with the physical consequences of treatment including hair loss and decreased mobility. The authors suggest that people with an intellectual disability might experience greater difficulties than other populations in understanding their symptoms.
- Social Perception
Participants were worried about how they were perceived by others, especially when the side effects of treatment were mistaken for being intoxicated or when they were placed on wards for older people which they felt to be inappropriate. The authors were unable to draw any firm conclusions about whether the stigma experienced by people with intellectual disabilities was greater than that experienced by other groups.
- Social Support
Participants reported mixed experiences of support from family members and carers. The authors also suggest that people with intellectual disabilities may be excluded from other forms of support such as peer and on-line support groups.
The authors suggest that there is a gap in research knowledge in the area of intellectual disability and chronic illness.
They point to the need for practitioners to be aware of the implications of the Mental Capacity Act (2005) in informing their care and practice when working with people with intellectual disabilities. Crucially, they remind us of the requirements enshrined in the Equality Act (2010) for the provision of accessible information. Failure to provide such information has very damaging consequences for people with intellectual disabilities living with chronic illness.
They conclude by stressing that it is important to consult people with learning disabilities themselves as information from caregivers has been found to be inconsistent with information given by participants themselves.
Strengths and limitations
As the authors themselves point out, the systematic review generated a very small number of studies that met the inclusion/exclusion criteria. However, this is a finding in itself suggesting that this is an area in which there is a need for further research. The strength of this study is that it begins to fill that gap in the literature.
Reflecting on this article a number of issues emerge. First, why is it that studies that report on the lives of people with chronic conditions such as cancer and diabetes exclude people with intellectual disabilities from the research? It could be argued that ‘diagnostic overshadowing’results in the exclusion of people with intellectual disabilities from research. On what grounds are people with intellectual disabilities excluded from such studies?
Secondly, the authors suggest that people with intellectual disabilities may have difficulty in engaging in self-management strategies and with expressing their emotions but that this strategy may not always be successful with people with an intellectual disability who “may express emotions in an unfamiliar way” (Adams and Oliver, 2011) (Flynn et al, 2015: 185).
I would suggest that this issue is not limited to the lives of people with intellectual disabilities and that, in fact, most people living with chronic illness might be described as expressing their emotions in unfamiliar ways. The privileging of self-management strategies in relation to chronic conditions raises questions about the extent to which person-centred approaches (Sanderson, 2000) have impacted on services meeting the needs of people living with chronic health conditions.
A lack of accessible information including easy read and pictorial support seem to evidence a lack of engagement with such approaches.
Finally, and here I must declare an interest as the mother of a young person labeled with an intellectual disability, I question the implicit call to disconnect information held by family-carers from that given by the person with an intellectual disability. While it is clearly right to put the views and wishes of the person with an intellectual disability at the centre of the care offered and decisions made, there are dangers in disregarding information given by family members that are judged ‘inconsistent’ with those of the person with an intellectual disability.
As readers of this blog who are also familiar with the #JusticeforLB campaign (justiceforLB.org) will already know, family members already report being ignored by professionals in health care settings, often with tragic results. LB was left alone in a bath and drowned following an seizure, despite his mother having told the staff that she knew that LB was experiencing increased seizure activity as a result in changes to medication given to him while in an assessment and treatment unit.
Moreover, post-Winterbourne View, there was a general consensus that families had not been listened to and a renewed commitment was given that their knowledge and views would be taken into account in the care of people with intellectual disabilities. It is important for the lives of people with intellectual disabilities living with/without chronic conditions that this consensus is not eroded.
Flynn, S., Hulbert- Williams, N., Hulbert-Williams, L. and Bramwell, R. (2015) Psychosocial experiences of chronic illness in individuals with an intellectual disability: A systematic review of the literature, Journal of Applied Research in Intellectual Disabilities, 19(2) 178-194 [abstract]
Adams D & Oliver C (2011) The expression and assessment of emotions and internal states in internal states in individuals with severe or profound intellectual disabilities, Clinical Psychology Review 31: 293-306
Sanderson, H. (2000) Person centred planning: key features and approaches, York: Joseph Rowntree Foundation
@LearningDisElf @k_runswick_cole blog & thought-provoking discussion on living with chronic illness in #LD http://t.co/O4HlCl2xmG
People with learning disabilities have been excluded from studies focused on people living with chronic illness http://t.co/WtNZRc35gs
“@LearningDisElf: Ppl with LD have been excluded from studies focused on ppl living w chronic illness http://t.co/FS2D6y7tzd” @JusticeforLB
@k_runswick_cole @LearningDisElf @JusticeforLB I’ve been banging on about this forever and a day at work. Delighted it’s being looked at.
@sarasiobhan @LearningDisElf @JusticeforLB heard some terrible stats about early deaths & lack of access care @cds_sydney yesterday
@k_runswick_cole @LearningDisElf @JusticeforLB @CDS_Sydney :((((
Living with chronic illness: psychosocial experiences http://t.co/OI3TKqC6K6 via @LearningDisElf http://t.co/PgIbECRcxm
Living with chronic illness: psychosocial experiences https://t.co/HRgaTi3Pbi via @sharethis
Don’t miss: Living with chronic illness: psychosocial experiences http://t.co/WtNZRc35gs #EBP
Our systematic review (#chronicillness #intellectualdisability) has been reviewed by @k_runswick_cole @LearningDisElf http://t.co/aZRJ4tzkt9
Firstly I wish to express thanks, on behalf of myself and my co-authors, for this thoughtful blog of our recent article.
On the final thought from the blog author, it was not intended that the opinions and invaluable expertise of family caregivers should be disregarded, more that the voice of the individual with an intellectual disability is heard primarily and that we must be mindful of potential disparities of perceptions or opinions, such that they are noticed and collaboratively remedied.
@k_runswick_cole, Hi Katherine, there’s a comment by Dr Samantha Flynn on your blog. Interested in replying? http://t.co/mYZxCRTL1Z