p u b l i c h e a l t h 1 2 7 ( 2 0 1 3 ) 1 1 1 1 e1 1 1 6
Available online at www.sciencedirect.com
Public Health journal homepage: www.elsevier.com/puhe
Original Research
Health behaviours and mental health status of parents with intellectual disabilities: cross sectional study E. Emerson a,*, P. Brigham b a b
Centre for Disability Research and Policy, University of Sydney, Sydney, NSW 2141, Australia Public Health Cornwall Council, Saltash PL12 6LE, UK
article info
abstract
Article history:
Objectives: The authors sought to: (1) estimate the prevalence of health behaviours, mental
Received 9 April 2013
health and exposure to social determinants of poorer health among parents with and
Received in revised form
without intellectual disability; and (2) determine the extent to which between-group dif-
2 October 2013
ferences in health behaviours/status may be attributable to differential exposure to social
Accepted 4 October 2013
determinants of poorer health.
Available online 22 November 2013
Study design: Cross sectional survey. Methods: Secondary analysis of confidentialized needs analysis data collected in three
Keywords:
Primary Care Trusts in England on 46,023 households with young children.
Disability
Results: Households containing a parent with intellectual disabilities are at increased risk
Substance abuse
of: (1) poorer parental mental health, parental drug and alcohol abuse and smoking; (2)
Mental health
exposure to a range of environmental adversities. Controlling for the latter eliminated the
Smoking
increased risk of poorer health for single parent households headed by a person with in-
Social determinants
tellectual disabilities. For two parent headed households, risk of poorer parental mental health remained elevated. Conclusions: The poorer health of parents with intellectual disability may be accounted for by their markedly greater risk of exposure to common social determinants of poorer health rather than being directly attributable to their intellectual disability. ª 2013 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
Introduction Intellectual disabilities (referred to in the UK as learning disabilities or learning difficulties) refer to a significant general impairment in intellectual functioning that is acquired during childhood.1 Approximately 900,000 adults in England have intellectual disabilities (2.2% of the adult population).2
People with intellectual disabilities have significantly higher age-adjusted rates of mortality and morbidity than their non-disabled peers.1,3e5 This evidence, when combined with expose´s of failings in healthcare systems5e8 and increased attention to the human rights of disabled people,9,10 has led regulatory bodies and governments to stress the importance of reducing the health inequalities experienced by
* Corresponding author. E-mail address: [email protected] (E. Emerson). 0033-3506/$ e see front matter ª 2013 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.puhe.2013.10.001
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p u b l i c h e a l t h 1 2 7 ( 2 0 1 3 ) 1 1 1 1 e1 1 1 6
people with intellectual disabilities.11e17 Indeed, it is a legal requirement in the UK for public agencies to address the health inequalities experienced by people with disabilities under the Equality Act 2010 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010. The poorer health of people with intellectual disabilities is, in part, related to secondary conditions associated with syndromic causes of intellectual disabilities (e.g., high rates of congenital heart defects in children with Down’s syndrome).18 It is also evident, however, that they are also due to the significantly increased rates of people with intellectual disabilities being exposed to social determinants of poorer health including poverty and disability-related discrimination.1,3,4,19,20 Evidence indicates that increased risk of exposure to socio-economic disadvantage may account for 20e50% of the risk of poorer mental and physical health among children with intellectual disabilities.21e24 To date, no study has estimated the extent to which poorer health among adults with intellectual disabilities may be attributable to increased rates of exposure to these social determinants. Research on the health of adults with intellectual disabilities is impeded by the invisibility of adults with intellectual disabilities in population health surveys. This results from a number of factors including the absence or use of inappropriate methods to record the disability status of participants and the exclusion of potential participants with intellectual disabilities through the use of general household sampling frames (which exclude participants in most residential care settings) and failure to make ‘reasonable accommodations’ to interviewing procedures to enable the participation of people with disabilities.11,25,26 As a result, most research in this area is undertaken on convenience samples drawn from adults using specialist intellectual disability services. This is problematic given the evidence that: (1) the majority of adults with intellectual disabilities do not use specialized intellectual disability services27; and (2) their health needs may be quite different from those who do use such services.28 A limited amount of research has examined the situation of parents (primarily mothers) with (primarily mild) intellectual disabilities. This literature has reported increased rates of exposure to a range of environmental adversities (e.g., poverty, abuse) and poorer parental health including high rates of mental health problems and toxic levels of stress.29e34 The aim of the present paper is to further understand the health status of parents with intellectual disabilities by: (1) describing the prevalence of risky health behaviours, poor mental health and exposure to common social determinants of poorer health among parents with and without intellectual disability; and (2) determining the extent to which any between-group differences in health behaviours and mental health status may be attributable to between-group differences in exposure to common social determinants of poorer health.
Method The research reported in this paper is based on secondary analysis of confidentialized needs analysis data collected in three Primary Care Trusts (PCTs) in England covering a total
population of 1.25 million people. The data were collected between 2008 and 2012 in the context of surveys undertaken to estimate the needs of families with young children. Data were collected in all three areas by Health Visitors.
Sampling The sampling frame was households with children under five years in PCTs A and B and households with children under three years in PCT C. Health visitors were asked to note the presence or absence of 31 need variables for every family on their caseload in PCT A and C. In PCT C three extra variables were added, to gain additional information on service families and gypsy and traveller families.
Data collection Based upon their professional judgement and survey training, a health visitor assessed each family against a set of factors using standardized definitions and a common survey form (available on request from the authors). These factors covered observations of the health, social and lifestyle situation of the family together with details of illnesses and disabilities in the family. The association of a family with a particular health factor was therefore dependent upon the judgement of a heath visitor based upon their observations of the case in question, but the definitions for each variable are common to all the PCTs using the survey. In PCTs A and B the number of parents in the household exhibiting a parental characteristic (e.g., alcohol abuse) was recorded. In PCT C whether any parent in the household exhibited a parental characteristic (e.g., alcohol abuse) was recorded.
Measures Specific items used in the present analyses are presented in Table 1. Five indicators of low socio-economic position (low income, major wage earner unemployed, poor housing, temporary accommodation, three or more changes of address in last year) were combined to produce a single measure of breadth/depth of exposure to low socio-economic position. Intellectual disability was identified by the item ‘parent(s) have learning difficulties’ (recognized learning difficulties that required or still require additional educational support).
Analysis Data was collected at level of households (rather than individuals) in all three areas (e.g., the number of parents with intellectual disabilities in the household, the number of parents with mental health problems in the household). Consequently in two parent headed households it was not possible to link information on parental characteristics for individual parents. For example in a two parent headed household in which only one parent had intellectual disabilities and one parent was reported to abuse alcohol, it was not possible to determine whether it was the parent with intellectual disabilities who abused alcohol or their partner. As a result, analyses were undertaken separately for single parent (for which information on parental characteristic was
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Table 1 e Prevalence of depression or other mental health illness, abuse of alcohol and drugs, smoking status and exposure to indicators of environmental adversity. Variable
Parental health Depression or other mental health illness Abuses alcohol Abuses drugs Smokes Exposure to adversities Low income, dependant on benefits Major wage earner is unemployed Poor housing In temporary accommodation Three or more changes of address in last year Family affected by social isolation Violence within the family Parent(s) ‘in care’ or abused as a child Separation and/or divorce in last year Difficulties with spoken English Parent(s) have literacy problems A bereavement which is significant to the family Previous sudden infant death in the family
Single parent households
Two parent households
Parental ID
No ID
Parental ID
No ID
48%
29%
53%
13%
14% 15% 52%
7% 7% 40%
12% 9% 52%
1% 1% 20%
84%
65%
75%
13%
71%
46%
54%
6%
36% 16%
15% 9%
33% 7%
4% 2%
13%
5%
8%
1%
34%
15%
26%
7%
42% 42%
30% 10%
28% 33%
4% 2%
41%
32%
8%
1%
4%
3%
4%
3%
60%
3%
66%
1%
7%
5%
9%
2%
1%
1%
2%
1%
ID: Intellectual disability.
simultaneously available at both individual and household level) and two parent headed households. For two parent households preliminary analysis on data collected in PCTs A and B was undertaken first by excluding the subgroup in which only one parent had intellectual disabilities, second by including in the analysis a variable based on the number of parents with intellectual disabilities and third by including in the analysis a variable based on whether any parent had intellectual disabilities. The three approaches gave very similar results (available from the corresponding author). As a result the analyses reported in this paper are based on the third approach (including a variable based on whether any parent had intellectual disabilities) thus allowing for use of the data collected in all three PCTs. Multivariate logistic regression was used to determine the unadjusted and adjusted risk for adverse health outcomes and health behaviours among parents with intellectual disabilities. The following variables were added into the model (forced entry) in sequential blocks: (1) presence of intellectual disabilities (unadjusted risk); (2) breadth of exposure to five indicators of socio-economic disadvantage; (3) social
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isolation; (4) exposure to other adversities (violence within the family, separation or divorce, one or more parent was in care or abused as a child, a bereavement which is significant to the family, previous sudden infant death, parents have literacy problems, parents have difficulties with spoken English).
Results Information was collected on 46,023 households, 5256 (11.4%) of which were headed by a single parent. Among two parent headed households, 1.0% were identified as containing one or more parents with intellectual disabilities. Of these households, 57% were reported to be receiving social work or other professional support. In the two PCTs which recorded the number of parents with intellectual disability, in 22% of two parent headed households in which at least one parent has intellectual disability both parents were identified as having intellectual disabilities. Among single parent headed households, 3.2% were identified as containing a parent with intellectual disabilities. Of these, 45% were reported to be receiving social work or other professional support. Prevalence of depression or other mental health illness, abuse of alcohol and drugs and smoking status is presented in Table 1 along with rates of exposure to the indicators of environmental adversities used in the modelling. Families with a parent with intellectual disabilities were significantly (p < 0.05) more likely to be exposed to all adversities with the following exceptions: difficulties with spoken English; a bereavement (single parent headed households only); and previous sudden infant death (single parent headed households only). Unadjusted and sequentially adjusted risk for adverse health outcomes and health behaviours among parents with intellectual disabilities are presented in Table 2. The unadjusted risk for poorer mental health and behavioural health risks for parents with intellectual disabilities was significantly elevated for all indicators across both single and two parent headed households. Adjusting for differential rates of exposure to a range of environmental adversities markedly reduced the risk of poorer outcomes for parents with intellectual disabilities. For single parent headed households there were no statistically significant (p < 0.05) differences in risk for poorer outcomes associated with intellectual disability status after adjustment. For two parent headed households presence of one or more parents with intellectual disability was associated with significantly increased adjusted risk of poorer parental mental health and significantly reduced risk of smoking after adjustment.
Discussion Main finding of this study Households containing a parent with intellectual disabilities are at markedly increased risk of poorer parental mental health, parental drug and alcohol abuse and smoking. They are also at markedly increased risk of exposure to a wide range of environmental adversities (e.g., low income, poor housing,
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1.19 (0.76e1.87) 0.87 (0.54e1.42) 0.65 (0.50e0.85) 2.04 (1.47e2.84) 1.51 (1.04e2.29) 1.18 (0.95e1.46) 1.39 (0.89e2.16) 1.61 (1.05e1.50) 1.12 (0.83e4.52) 2.04 (1.32e3.15) 1.48 (0.95e2.31) 2.50 (1.65e3.79) 1.70 (1.11e2.61) 1.61 (1.20e2.17) 1.13 (0.83e1.53)
0.79 (0.46e1.36) 0.85 (0.50e1.43) 0.75 (0.53e1.08)
10.34 (7.58e14.11) 2.15 (1.54e2.98) 8.60 (6.04e12.27) 1.58 (1.09e2.29) 4.39 (3.60e5.34) 1.16 (0.94e1.44)
2.03 (1.55e2.65) 2.63 (2.12e3.26) 2.79 (2.25e3.44) 7.68 (6.30e9.36) 1.07 (0.74e1.55) 1.50 (1.10e2.04) 2.21 (1.64e2.96) 1.65 (1.22e2.23)
Depression or other mental health illness Abuses alcohol Abuses drugs Smokes
Adjusted SEP Adjusted SEP þ social Adjusted SEP þ social isolation isolation þ other adversities Unadjusted
Adjusted SEP Adjusted SEP þ social Adjusted SEP þ social isolation isolation þ other adversities
Unadjusted
Two parent households Single parent households Variable
Table 2 e Unadjusted and adjusted risk for adverse health outcomes and health behaviours among parents with intellectual disabilities.
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social isolation, parental history of abuse). Controlling for differential rates of between-group exposure to these adversities eliminates the increased risk of poorer health for single parent households headed by a person with intellectual disabilities. For two parent headed households, risk of poorer parental mental health remains significantly elevated, while risk of smoking became significantly lower than in two parent households in which no parent has intellectual disabilities.
What is already known on this topic Little is known about the health of the ‘hidden majority’ of adults with mild intellectual disabilities who do not use specialized intellectual disability services.28 The available literature suggests that this group may engage in more risky health behaviours such as smoking and substance abuse, have poorer psychological health and have reduced access to health promotion and screening interventions.28,32e38 To date, no study has effectively examined the extent to which the poorer health of this population may be attributable to their increased risk of exposure to well established social determinants of health.
What this study adds This study adds significantly to current knowledge about the health and likely determinants of health of a marginalized and vulnerable group of adults; parents who have intellectual disabilities. First, it uses a comprehensive population based sampling frame to identify parents. This is particularly important as most knowledge about the health of adults with intellectual disabilities is based on convenience samples drawn from administrative records of users of specialist intellectual disability services. Approximately 50% of the present sample was not in receipt of social work or other forms of professional support. Of those who were, it is highly likely (given the paucity of specialized support services for parents with intellectual disability in England) that this support was provided from generic health, social care and child protection services rather than from specialist intellectual disability services. Second, this is the first study to effectively examine the extent to which the poorer health of this population may be attributable to their increased risk of exposure to well established social determinants of health. The results presented above suggest that the poorer health of this population may be largely attributable to their marginal social position and exposure to a range of environmental adversities commonly associated with marginality, rather than their intellectual disability per se.
Limitations of this study The two major limitations to the study are: (1) the use of survey questions of unknown psychometric characteristics; and (2) the use of a cross-sectional design. The use of administrative data in public health research typically represents a trade off between sample size/representativeness and data fidelity. In the present study, the use of consistent definitions across areas and the use of training in case note review
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should have improved the reliability and validity of the data collected. The use of a cross-sectional design clearly precludes the drawing of any conclusion regarding the causal relationships between intellectual disability, exposure to common social determinants of poorer health and health status/ behaviour. However, given the extensive background literature suggesting that health effects on social mobility play only a minor part in accounting for social gradients in health,39e41 the present results are certainly consistent with the hypothesis that the poorer health of parents with intellectual disability may be accounted for by their markedly greater risk of exposure to common social determinants of poorer health rather than being directly attributable to their intellectual disability. It would, however, appear quite plausible that greater risk of exposure to common social determinants of poorer health may be a mediating pathway linking intellectual disability to poorer health.1
Author statements Ethical approval The research was undertaken using confidentialized household-level data collected for local administrative purposes.
Funding None declared.
Competing interests None declared.
references
1. Emerson E, Hatton C. Health inequalities and people with intellectual disabilities. Cambridge: Cambridge University Press; 2014. 2. Emerson E, Hatton C, Robertson J, Baines S, Christie A, Glover G. People with learning disabilities in England: 2012. Durham: Improving Health & Lives: Learning Disabilities Observatory; 2013. 3. Emerson E, Baines S, Allerton L, Welch V. Health inequalities & people with learning disabilities in the UK: 2012. Durham: Improving Health & Lives: Learning Disabilities Observatory; 2012. 4. Krahn G, Fox MH. Health disparities of adults with intellectual disabilities: what do we know? What do we do? Journal of Applied Research in Intellectual Disability; 2013 [in press]. 5. Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. Confidential inquiry into premature deaths of people with learning disabilities. Bristol: Norah Fry Research Centre; 2013. 6. Mencap. Death by indifference. London: Mencap; 2007. 7. Mencap. Death by indifference: 74 deaths and counting. A progress report 5 years on. London: Mencap; 2012. 8. Michael J. Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. London: Independent Inquiry into Access to Healthcare for People with Learning Disabilities; 2008.
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9. House of Lords and House of Commons Joint Committee on Human Rights. A life like any other? Human rights of adults with learning disabilities. London: The Stationery Office Limited; 2008. 10. United Nations. Convention on the rights of persons with disabilities. New York: United Nations; 2006. 11. Krahn G, Fox MH, Campbell VA, Ramon I, Jesien G. Developing a health surveillance system for people with intellectual disabilities in the United States. Journal of Policy & Practice in Intellectual Disabilities; 2010::155e66. 12. Disability Rights Commission. Equal treatment e closing the gap. London Disability Rights Commission; 2006. 13. Parliamentary and Health Service Ombudsman and Local Government Ombudsman. Six lives: the provision of public services to people with learning disabilities. London: Parliamentary and Health Service Ombudsman and Local Government Ombudsman; 2009. 14. Department of Health. Promoting equality: response from Department of Health to the disability rights commission report, “Equal treatment: closing the gap”. London: Department of Health; 2007. 15. Department of Health. Valuing people now: a new three-year strategy for people with learning disabilities. London: Department of Health; 2009. 16. Department of Health. ‘Six lives’ progress report. London: Department of Health; 2010. 17. US Department of Health and Human Services. Closing the gap: a national blueprint to improve the health of persons with mental retardation. Rockville, MD: US Department of Health and Human Services; 2002. 18. Akker M, Maaskant MA, Meijden RJM. Cardiac diseases in people with intellectual disability. Journal of Intellectual Disability Research 2006;50:515e22. 19. Ouellette-Kuntz H. Understanding health disparities and inequities faced by individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2005;18:113e21. 20. Emerson E, Vick B, Rechel B, Mun˜oz I, Sørensen J, Fa¨rm I. Health inequalities and people with disabilities in Europe. Copenhagen: European Regional Office of the World Health Organization; 2013 [in press]. 21. Emerson E, Einfeld S. Emotional and behavioural difficulties in young children with and without developmental delay: a bi-national perspective. Journal of Child Psychology and Psychiatry 2010;51:583e93. 22. Emerson E, Hatton C. The contribution of socio-economic position to the health inequalities faced by children and adolescents with intellectual disabilities in Britain. American Journal of Mental Retardation 2007;112:140e50. 23. Emerson E, Hatton C. Poverty, socio-economic position, social capital and the health of children and adolescents with intellectual disabilities in Britain: a replication. Journal of Intellectual Disability Research 2007;51:866e74. 24. Emerson E, Hatton C. The mental health of children and adolescents with intellectual disabilities in Britain. British Journal of Psychiatry 2007;191:493e9. 25. Linehan C, Walsh PN, Van Schrojenstein Lantman-deValk H, Kerr MP, Dawson FPomona-I Group. Are people with intellectual disabilities represented in European public health surveys? Journal of Applied Research in Intellectual Disabilities 2009;22:409e20. 26. Fujiura GT, Rutkowski-Kmitta V, Owen R. Make measurable what is not so: national monitoring of the status of persons with intellectual disability. American Journal of Intellectual and Developmental Disabilities 2010;35:244e58. 27. Emerson E, Glover G. The ‘transition cliff’ in the administrative prevalence of learning disabilities in England. Tizard Learning Disability Review 2012;17:139e43.
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28. Emerson E. Health status and health risks of the ‘hidden majority’ of adults with intellectual disability. Intellectual and Developmental Disabilities 2011;49:155e65. 29. IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disabilities. Parents labelled with intellectual disability: position of the IASSID SIRG on parents and parenting with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2008;21:296e307. 30. Llewellyn G. Mothers with intellectual disability and their babies: a population warranting special consideration. Acta Obstetricia et Gynecologica Scandinavica 2012;91:1353e6. 31. Collings, Llewellyn G. Children of parents with intellectual disability: facing poor outcomes or faring okay? Journal of Intellectual & Developmental Disability 2012;37:65e82. 32. Llewellyn G, McConnell D, Mayes R. Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health 2003;27(1):17e9. 33. Feldman M, McConnell D, Aunos M. Parental cognitive impairment, mental health and child outcomes in a child protection population. Journal of Mental Health Research in Intellectual Disabilities 2012;5:66e90.
34. McConnell D, Mayes R, Llewellyn G. Women with intellectual disability at risk of adverse pregnancy and birth outcomes. Journal of Intellectual Disability Research 2008;52:529e35. 35. Maughan B, Collishaw S, Pickles A. Mild mental retardation: psychosocial functioning in adulthood. Psychological Medicine 1999;29:351e66. 36. Ferrari M. Borderline intellectual functioning and the intellectual disability construct. Intellectual and Developmental Disabilities 2009;47:386e9. 37. Chapman SLC, Wu T. Substance abuse among individuals with intellectual disabilities. Research in Developmental Disabilities 2012;33:1147e56. 38. Snell M, Luckasson R. Characteristics and needs of people with intellectual disability who have higher IQs. Intellectual and Developmental Disabilities 2009;47:220e33. 39. Marmot M, Wilkinson RG, editors. Social determinants of health. 2nd ed. Oxford: Oxford University Press; 2006. 40. Graham H. Unequal lives: health and socioeconomic inequalities. Maidenhead: Open University Press; 2007. 41. Kreiger N. Epidemiology and the people’s health: theory and context. Oxford: Oxford University Press; 2011.
Available online at www.sciencedirect.com
Public Health journal homepage: www.elsevier.com/puhe
Original Research
Health behaviours and mental health status of parents with intellectual disabilities: cross sectional study E. Emerson a,*, P. Brigham b a b
Centre for Disability Research and Policy, University of Sydney, Sydney, NSW 2141, Australia Public Health Cornwall Council, Saltash PL12 6LE, UK
article info
abstract
Article history:
Objectives: The authors sought to: (1) estimate the prevalence of health behaviours, mental
Received 9 April 2013
health and exposure to social determinants of poorer health among parents with and
Received in revised form
without intellectual disability; and (2) determine the extent to which between-group dif-
2 October 2013
ferences in health behaviours/status may be attributable to differential exposure to social
Accepted 4 October 2013
determinants of poorer health.
Available online 22 November 2013
Study design: Cross sectional survey. Methods: Secondary analysis of confidentialized needs analysis data collected in three
Keywords:
Primary Care Trusts in England on 46,023 households with young children.
Disability
Results: Households containing a parent with intellectual disabilities are at increased risk
Substance abuse
of: (1) poorer parental mental health, parental drug and alcohol abuse and smoking; (2)
Mental health
exposure to a range of environmental adversities. Controlling for the latter eliminated the
Smoking
increased risk of poorer health for single parent households headed by a person with in-
Social determinants
tellectual disabilities. For two parent headed households, risk of poorer parental mental health remained elevated. Conclusions: The poorer health of parents with intellectual disability may be accounted for by their markedly greater risk of exposure to common social determinants of poorer health rather than being directly attributable to their intellectual disability. ª 2013 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.
Introduction Intellectual disabilities (referred to in the UK as learning disabilities or learning difficulties) refer to a significant general impairment in intellectual functioning that is acquired during childhood.1 Approximately 900,000 adults in England have intellectual disabilities (2.2% of the adult population).2
People with intellectual disabilities have significantly higher age-adjusted rates of mortality and morbidity than their non-disabled peers.1,3e5 This evidence, when combined with expose´s of failings in healthcare systems5e8 and increased attention to the human rights of disabled people,9,10 has led regulatory bodies and governments to stress the importance of reducing the health inequalities experienced by
* Corresponding author. E-mail address: [email protected] (E. Emerson). 0033-3506/$ e see front matter ª 2013 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.puhe.2013.10.001
1112
p u b l i c h e a l t h 1 2 7 ( 2 0 1 3 ) 1 1 1 1 e1 1 1 6
people with intellectual disabilities.11e17 Indeed, it is a legal requirement in the UK for public agencies to address the health inequalities experienced by people with disabilities under the Equality Act 2010 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010. The poorer health of people with intellectual disabilities is, in part, related to secondary conditions associated with syndromic causes of intellectual disabilities (e.g., high rates of congenital heart defects in children with Down’s syndrome).18 It is also evident, however, that they are also due to the significantly increased rates of people with intellectual disabilities being exposed to social determinants of poorer health including poverty and disability-related discrimination.1,3,4,19,20 Evidence indicates that increased risk of exposure to socio-economic disadvantage may account for 20e50% of the risk of poorer mental and physical health among children with intellectual disabilities.21e24 To date, no study has estimated the extent to which poorer health among adults with intellectual disabilities may be attributable to increased rates of exposure to these social determinants. Research on the health of adults with intellectual disabilities is impeded by the invisibility of adults with intellectual disabilities in population health surveys. This results from a number of factors including the absence or use of inappropriate methods to record the disability status of participants and the exclusion of potential participants with intellectual disabilities through the use of general household sampling frames (which exclude participants in most residential care settings) and failure to make ‘reasonable accommodations’ to interviewing procedures to enable the participation of people with disabilities.11,25,26 As a result, most research in this area is undertaken on convenience samples drawn from adults using specialist intellectual disability services. This is problematic given the evidence that: (1) the majority of adults with intellectual disabilities do not use specialized intellectual disability services27; and (2) their health needs may be quite different from those who do use such services.28 A limited amount of research has examined the situation of parents (primarily mothers) with (primarily mild) intellectual disabilities. This literature has reported increased rates of exposure to a range of environmental adversities (e.g., poverty, abuse) and poorer parental health including high rates of mental health problems and toxic levels of stress.29e34 The aim of the present paper is to further understand the health status of parents with intellectual disabilities by: (1) describing the prevalence of risky health behaviours, poor mental health and exposure to common social determinants of poorer health among parents with and without intellectual disability; and (2) determining the extent to which any between-group differences in health behaviours and mental health status may be attributable to between-group differences in exposure to common social determinants of poorer health.
Method The research reported in this paper is based on secondary analysis of confidentialized needs analysis data collected in three Primary Care Trusts (PCTs) in England covering a total
population of 1.25 million people. The data were collected between 2008 and 2012 in the context of surveys undertaken to estimate the needs of families with young children. Data were collected in all three areas by Health Visitors.
Sampling The sampling frame was households with children under five years in PCTs A and B and households with children under three years in PCT C. Health visitors were asked to note the presence or absence of 31 need variables for every family on their caseload in PCT A and C. In PCT C three extra variables were added, to gain additional information on service families and gypsy and traveller families.
Data collection Based upon their professional judgement and survey training, a health visitor assessed each family against a set of factors using standardized definitions and a common survey form (available on request from the authors). These factors covered observations of the health, social and lifestyle situation of the family together with details of illnesses and disabilities in the family. The association of a family with a particular health factor was therefore dependent upon the judgement of a heath visitor based upon their observations of the case in question, but the definitions for each variable are common to all the PCTs using the survey. In PCTs A and B the number of parents in the household exhibiting a parental characteristic (e.g., alcohol abuse) was recorded. In PCT C whether any parent in the household exhibited a parental characteristic (e.g., alcohol abuse) was recorded.
Measures Specific items used in the present analyses are presented in Table 1. Five indicators of low socio-economic position (low income, major wage earner unemployed, poor housing, temporary accommodation, three or more changes of address in last year) were combined to produce a single measure of breadth/depth of exposure to low socio-economic position. Intellectual disability was identified by the item ‘parent(s) have learning difficulties’ (recognized learning difficulties that required or still require additional educational support).
Analysis Data was collected at level of households (rather than individuals) in all three areas (e.g., the number of parents with intellectual disabilities in the household, the number of parents with mental health problems in the household). Consequently in two parent headed households it was not possible to link information on parental characteristics for individual parents. For example in a two parent headed household in which only one parent had intellectual disabilities and one parent was reported to abuse alcohol, it was not possible to determine whether it was the parent with intellectual disabilities who abused alcohol or their partner. As a result, analyses were undertaken separately for single parent (for which information on parental characteristic was
p u b l i c h e a l t h 1 2 7 ( 2 0 1 3 ) 1 1 1 1 e1 1 1 6
Table 1 e Prevalence of depression or other mental health illness, abuse of alcohol and drugs, smoking status and exposure to indicators of environmental adversity. Variable
Parental health Depression or other mental health illness Abuses alcohol Abuses drugs Smokes Exposure to adversities Low income, dependant on benefits Major wage earner is unemployed Poor housing In temporary accommodation Three or more changes of address in last year Family affected by social isolation Violence within the family Parent(s) ‘in care’ or abused as a child Separation and/or divorce in last year Difficulties with spoken English Parent(s) have literacy problems A bereavement which is significant to the family Previous sudden infant death in the family
Single parent households
Two parent households
Parental ID
No ID
Parental ID
No ID
48%
29%
53%
13%
14% 15% 52%
7% 7% 40%
12% 9% 52%
1% 1% 20%
84%
65%
75%
13%
71%
46%
54%
6%
36% 16%
15% 9%
33% 7%
4% 2%
13%
5%
8%
1%
34%
15%
26%
7%
42% 42%
30% 10%
28% 33%
4% 2%
41%
32%
8%
1%
4%
3%
4%
3%
60%
3%
66%
1%
7%
5%
9%
2%
1%
1%
2%
1%
ID: Intellectual disability.
simultaneously available at both individual and household level) and two parent headed households. For two parent households preliminary analysis on data collected in PCTs A and B was undertaken first by excluding the subgroup in which only one parent had intellectual disabilities, second by including in the analysis a variable based on the number of parents with intellectual disabilities and third by including in the analysis a variable based on whether any parent had intellectual disabilities. The three approaches gave very similar results (available from the corresponding author). As a result the analyses reported in this paper are based on the third approach (including a variable based on whether any parent had intellectual disabilities) thus allowing for use of the data collected in all three PCTs. Multivariate logistic regression was used to determine the unadjusted and adjusted risk for adverse health outcomes and health behaviours among parents with intellectual disabilities. The following variables were added into the model (forced entry) in sequential blocks: (1) presence of intellectual disabilities (unadjusted risk); (2) breadth of exposure to five indicators of socio-economic disadvantage; (3) social
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isolation; (4) exposure to other adversities (violence within the family, separation or divorce, one or more parent was in care or abused as a child, a bereavement which is significant to the family, previous sudden infant death, parents have literacy problems, parents have difficulties with spoken English).
Results Information was collected on 46,023 households, 5256 (11.4%) of which were headed by a single parent. Among two parent headed households, 1.0% were identified as containing one or more parents with intellectual disabilities. Of these households, 57% were reported to be receiving social work or other professional support. In the two PCTs which recorded the number of parents with intellectual disability, in 22% of two parent headed households in which at least one parent has intellectual disability both parents were identified as having intellectual disabilities. Among single parent headed households, 3.2% were identified as containing a parent with intellectual disabilities. Of these, 45% were reported to be receiving social work or other professional support. Prevalence of depression or other mental health illness, abuse of alcohol and drugs and smoking status is presented in Table 1 along with rates of exposure to the indicators of environmental adversities used in the modelling. Families with a parent with intellectual disabilities were significantly (p < 0.05) more likely to be exposed to all adversities with the following exceptions: difficulties with spoken English; a bereavement (single parent headed households only); and previous sudden infant death (single parent headed households only). Unadjusted and sequentially adjusted risk for adverse health outcomes and health behaviours among parents with intellectual disabilities are presented in Table 2. The unadjusted risk for poorer mental health and behavioural health risks for parents with intellectual disabilities was significantly elevated for all indicators across both single and two parent headed households. Adjusting for differential rates of exposure to a range of environmental adversities markedly reduced the risk of poorer outcomes for parents with intellectual disabilities. For single parent headed households there were no statistically significant (p < 0.05) differences in risk for poorer outcomes associated with intellectual disability status after adjustment. For two parent headed households presence of one or more parents with intellectual disability was associated with significantly increased adjusted risk of poorer parental mental health and significantly reduced risk of smoking after adjustment.
Discussion Main finding of this study Households containing a parent with intellectual disabilities are at markedly increased risk of poorer parental mental health, parental drug and alcohol abuse and smoking. They are also at markedly increased risk of exposure to a wide range of environmental adversities (e.g., low income, poor housing,
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1.19 (0.76e1.87) 0.87 (0.54e1.42) 0.65 (0.50e0.85) 2.04 (1.47e2.84) 1.51 (1.04e2.29) 1.18 (0.95e1.46) 1.39 (0.89e2.16) 1.61 (1.05e1.50) 1.12 (0.83e4.52) 2.04 (1.32e3.15) 1.48 (0.95e2.31) 2.50 (1.65e3.79) 1.70 (1.11e2.61) 1.61 (1.20e2.17) 1.13 (0.83e1.53)
0.79 (0.46e1.36) 0.85 (0.50e1.43) 0.75 (0.53e1.08)
10.34 (7.58e14.11) 2.15 (1.54e2.98) 8.60 (6.04e12.27) 1.58 (1.09e2.29) 4.39 (3.60e5.34) 1.16 (0.94e1.44)
2.03 (1.55e2.65) 2.63 (2.12e3.26) 2.79 (2.25e3.44) 7.68 (6.30e9.36) 1.07 (0.74e1.55) 1.50 (1.10e2.04) 2.21 (1.64e2.96) 1.65 (1.22e2.23)
Depression or other mental health illness Abuses alcohol Abuses drugs Smokes
Adjusted SEP Adjusted SEP þ social Adjusted SEP þ social isolation isolation þ other adversities Unadjusted
Adjusted SEP Adjusted SEP þ social Adjusted SEP þ social isolation isolation þ other adversities
Unadjusted
Two parent households Single parent households Variable
Table 2 e Unadjusted and adjusted risk for adverse health outcomes and health behaviours among parents with intellectual disabilities.
p u b l i c h e a l t h 1 2 7 ( 2 0 1 3 ) 1 1 1 1 e1 1 1 6
social isolation, parental history of abuse). Controlling for differential rates of between-group exposure to these adversities eliminates the increased risk of poorer health for single parent households headed by a person with intellectual disabilities. For two parent headed households, risk of poorer parental mental health remains significantly elevated, while risk of smoking became significantly lower than in two parent households in which no parent has intellectual disabilities.
What is already known on this topic Little is known about the health of the ‘hidden majority’ of adults with mild intellectual disabilities who do not use specialized intellectual disability services.28 The available literature suggests that this group may engage in more risky health behaviours such as smoking and substance abuse, have poorer psychological health and have reduced access to health promotion and screening interventions.28,32e38 To date, no study has effectively examined the extent to which the poorer health of this population may be attributable to their increased risk of exposure to well established social determinants of health.
What this study adds This study adds significantly to current knowledge about the health and likely determinants of health of a marginalized and vulnerable group of adults; parents who have intellectual disabilities. First, it uses a comprehensive population based sampling frame to identify parents. This is particularly important as most knowledge about the health of adults with intellectual disabilities is based on convenience samples drawn from administrative records of users of specialist intellectual disability services. Approximately 50% of the present sample was not in receipt of social work or other forms of professional support. Of those who were, it is highly likely (given the paucity of specialized support services for parents with intellectual disability in England) that this support was provided from generic health, social care and child protection services rather than from specialist intellectual disability services. Second, this is the first study to effectively examine the extent to which the poorer health of this population may be attributable to their increased risk of exposure to well established social determinants of health. The results presented above suggest that the poorer health of this population may be largely attributable to their marginal social position and exposure to a range of environmental adversities commonly associated with marginality, rather than their intellectual disability per se.
Limitations of this study The two major limitations to the study are: (1) the use of survey questions of unknown psychometric characteristics; and (2) the use of a cross-sectional design. The use of administrative data in public health research typically represents a trade off between sample size/representativeness and data fidelity. In the present study, the use of consistent definitions across areas and the use of training in case note review
p u b l i c h e a l t h 1 2 7 ( 2 0 1 3 ) 1 1 1 1 e1 1 1 6
should have improved the reliability and validity of the data collected. The use of a cross-sectional design clearly precludes the drawing of any conclusion regarding the causal relationships between intellectual disability, exposure to common social determinants of poorer health and health status/ behaviour. However, given the extensive background literature suggesting that health effects on social mobility play only a minor part in accounting for social gradients in health,39e41 the present results are certainly consistent with the hypothesis that the poorer health of parents with intellectual disability may be accounted for by their markedly greater risk of exposure to common social determinants of poorer health rather than being directly attributable to their intellectual disability. It would, however, appear quite plausible that greater risk of exposure to common social determinants of poorer health may be a mediating pathway linking intellectual disability to poorer health.1
Author statements Ethical approval The research was undertaken using confidentialized household-level data collected for local administrative purposes.
Funding None declared.
Competing interests None declared.
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