Individuals with intellectual disability and their families can encounter various challenges and complexities; from reduced intellectual ability, social loneliness and the difficulty of implementing practical skills for living independently (Lennox et al, 2007). In the contemporary climate of cultural transformation, a rapid ageing population, smaller family structures and women having children later in life, countless caregivers are rearing their children and simultaneously caring for a relative with chronic health needs (Lafferty et al, 2016). These caregivers have come to be known as the ‘sandwich generation’ (Lafferty et al, 2016). Scores of siblings are also assuming the role of caregiver for a brother or sister with an intellectual disability when their parents become ill and subsequently die (Tebes and Irish, 2000). Some caregivers struggle with the role and responsibility of caring for a loved one, while others adapt and adjust to the role of caregiver (Herrman et al, 2011).
Individuals with intellectual disability are at higher risk of experiencing extensive health problems, which are often undiagnosed or even misdiagnosed (Cooper et al, 2004; Herman et al, 2011). Research studies have shown that these individuals experience double the amount of health problems and comorbidities, compared to their peers in the general population (Beange, 2002; Morgan et al, 2003; Cooper et al, 2004). Secondary to intellectual disability, these individuals may experience constipation, visual impairment, epilepsy, urinary incontinence, gastro-oesophageal reflux and dysphagia (Van Timmeren et al, 2016). Naturally, these health conditions negatively affect their quality of life (Petry et al, 2009).
The American Association on Intellectual and Developmental Disabilities (2012) defined intellectual disability as ‘a significant limitation in intellectual functioning and in adaptive behaviour, which covers many everyday social and practical skills and originates before the age of 18 years'. The World Health Organization (2008) further classified intellectual disability as based on the extent of the assistance required and the intelligence quotient (IQ) of the individual when assessed. An IQ of 50–69 is termed as a ‘mild learning disability’, an IQ of 35–49 as a ‘moderate learning disability’, an IQ of 20–34 as a ‘severe learning disability’ and an IQ of less than 20 as a ‘profound learning disability’. In the UK, approximately 1.5 million people have an intellectual disability, equivalent to 905 000 adults and 286 000 children (Emerson et al, 2011). In Ireland, 66 611 people have been recorded as having an intellectual disability, equivalent to 1.4% of the population (Central Statistics Office, 2016). It is estimated that two-thirds of these individuals are cared for at home by families in a community setting (Linehan et al, 2014).
Prevalence of constipation and its impact on quality of life
Constipation is a more common clinical symptom among people with intellectual disabilities compared to other cohorts of the population (Hardy et al, 2013). Research studies have identified that constipation is significantly correlated to intellectual disability, as individuals with the latter often have associated problems, such as reduced mobility, poor nutrition, physical disability, for example, cerebral palsy, neurological diseases and psychological distress (Cooper et al, 2007). In the general population, the prevalence of constipation has been reported to be as low as 12–19%, but this increases in older age groups, and it is estimated that more women than men suffer from symptoms of constipation in old age (Higgins and Johanson, 2004). The digestive system of an individual with intellectual disability is susceptible to gastrointestinal disorders, with an estimated 94% of this cohort of the population suffering from constipation (Van Timmeren et al, 2016). Previously, Petry et al (2009) reported that the incidence of constipation was as low as 44%. In the same year, Van der Heide et al (2009) reported that 60% of individuals with intellectual disability experienced constipation. Such inconsistencies in reporting, under-reporting and poor detection of chronic constipation can lead patients to develop severe gastrointestinal complications, such as ileus (Van Schrojenstein Lantman-de Valk and Walsh, 2008). If individuals are living in a residential setting, lack of privacy when toileting can also contribute to constipation (Linton, 2014).
Constipation not only negatively affects the physical and psychosocial quality of life and wellbeing of individuals, but it also has economic impacts, in relation to medication expenses and nursing time (Emly and Rochester, 2006).
Health considerations for people with intellectual disability
Individuals with an intellectual disability and their families must apprehend, accept and adapt to the consequences of intellectual disability, namely, delayed global developmental, physical and sensory impairment, psychological distress and poly pharmacy (Nakken and Vlaskamp, 2007; Hermans and Evenhuis, 2014). People with intellectual disability may also experience physical pain, psychological problems, and behavioural problems due to their inability to communicate their symptoms to health professionals (Van Schrojenstein Lantman-de Valk and Walsh, 2008).
Nowadays, individuals with intellectual disability are living longer and are presenting in old age with complex physical and psychosocial care needs that require interventions from competent, capable nurses and a multidisciplinary team of health professionals (McCarron et al, 2018). Individuals with intellectual disability may experience complex multifaceted health and wellbeing concerns, including physical conditions, cognitive disabilities and reduced communication skills (Van Timmeren et al, 2016). These factors place these individuals at risk of receiving inadequate healthcare (Van Timmeren et al, 2016). Chronic constipation has been linked with physical and psychological distress, discomfort, pain and behavioural difficulties, which include social isolation, anxiety and, in severe cases, self-harm (Janowsky et al, 2003; Kozma and Mason, 2003; Christensen et al, 2009). These symptoms can be exacerbated if the chronic constipation is prolonged and protracted (Marriott and Emly, 2016). Historically, constipation has been difficult to define, being quantified by impartial and subjective analyses of symptoms (Munch et al, 2016). However, Rome 111 is an international empirical framework for defining chronic constipation (Dal Molin et al, 2012) (Table 1).
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| 2. Loose stools are rarely present without the use of laxatives |
| 3. Insufficient criteria for irritable bowel syndrome |
Some years ago, the European Commission Health Monitoring Body inaugurated the Pomona Project, which involved researchers from 13 European countries, to communicate, consult and collaborate on the health and wellbeing of people with intellectual disability (Walsh, 2005). Nunn et al (2008) identified that the health needs of individuals with intellectual disability are rarely represented in health promotion strategies, plans or programmes. The findings of the Pomona Project revealed the need for assessment, monitoring and evaluation of healthcare provided to individuals with intellectual disability (Walsh, 2005). The United Nations (2006) maintained that individuals with intellectual disability should have equity of access to all healthcare interventions, whereby they might achieve good health outcomes.
Assessment process
Health professionals require education to be knowledgeable about the risk factors of constipation (Chapman and Hungerford, 2015). The rationale for using a constipation assessment process is to ensure the development of planning, implementation and evaluation strategies that will offer quality health outcomes for individuals and their families (Chapman and Hungerford, 2015). Marriott and Emly (2016) robustly claimed that the causative factors of physical pain, psychological concerns and behavioural difficulties need to be thoroughly assessed, as a condition like constipation could trigger deterioration of health and wellbeing.
Systematic continence assessment is the initial process in a proactive treatment plan for constipation (Linton, 2014). Gallegos-Orozco et al (2011) advised that the assessment process should involve recording dietary intake, to include food and fluid. Additionally, bowel pattern should be objectively and quantitatively recorded using the Bristol Stool Scale (Heaton, 1994). If an individual presents with symptoms of straining, distress, pain and urge to defecate, these clinical indications need criteria appraisal (Gallegos-Orozco et al, 2011). If constipation is not resolved proactively, symptoms such as pain, soiling, nausea, vomiting, impaction and obstruction may present (Bromley, 2014). Norton (2004) reported that the complications of constipation can range from conservative to radical, such as abdominal distension, pain, anxiety and depression. These may be exacerbated if individuals are unable or reluctant to communicate about their bowel habits (Norton, 2004). The efficacy of prescribed and over-the-counter medication can be difficult to establish, as individuals with intellectual disability may have reduced expressive and receptive communication ability (De Kuijper et al, 2010). Health professionals need active observation skills to detect the side effects of medications on individuals (De Kuijper et al, 2010). Often, individuals with intellectual disability are prescribed psychotropic and anti-epileptic medications, which may lead to complex side effects with the potential for significant interactions (McGillicuddy, 2006; De Kuijper et al, 2010).
Treatment
Several practical treatment interventions are available for constipation, from lifestyle alterations and alternative therapies to medication; nonetheless, there is a continuous need for person-centred approaches within a framework that abides by the principles of evidence-based practice (Marsh et al, 2010; Charlot et al, 2011; Cockburn-Wells, 2014). Crawley (2007) claimed that constipation is caused by a lack of dietary fiber, dehydration and lack of physical activity and that a holistic approach is essential to treat this condition. Individuals are encouraged to change their daily routine by incorporating the consumption of a hot drink and a cereal high in fibre for breakfast, in addition to increasing the amount of physical activity undertaken during the day (Gallegos-Orozco et al, 2011). These lifestyle changes support the stimulation to defecate by use of the gastro-colic reflex (Rao et al, 2001; Wald, 2006). Heaton's (1994) study identified that most individuals frequently empty their bowels at the same time each day, mostly after waking or eating a meal. It is advantageous to encourage individuals to sit on the toilet 30 minutes after eating food to stimulate the gastro-colic reflex (Hsieh, 2005).
Bromley (2014) reported that abdominal massage reduces the symptom of constipation and found that individuals with intellectual disability have improved sleep patterns, reduced challenging behaviours and better dietary and oral fluid intake after this intervention. Abdominal massage was found to have multiple benefits, from enhanced physical contact, enhanced interaction between individuals and their caregivers and improvements in clinical constipation (Bromley, 2014). Abdominal massage is a gentle intervention with low risk of harm to the individual, it improves quality of life, reduces the need for laxative medication and decreases the discomfort experienced when passing a bowel motion (Moss et al, 2007; Smith and Moss, 2008; Lämås et al, 2010). Probiotics usage for the treatment of constipation has attracted considerable interest in recent years (Gallegos-Orozco et al, 2011). Roach and Christie (2008) research study identified that probiotics assisted by increasing the frequency of bowel motions and reduced discomfort when passing bowel motions. However, Chmielewska and Szajewska (2010) stated that more robust research evidence is needed to universally use probiotics for individuals with constipation symptoms.
Hsieh (2005) recommended the initial use of conservative interventions to improve constipation symptoms. However, the use of a laxative may be deemed necessary if non-pharmacological methods are unsuccessful. Management with medication such as laxatives is beneficial, but the dose may need to be titrated to prevent side-effects (Linton, 2014). The categories of prescribed laxative differ from bulking agents (Fyobel) to stimulant laxatives (Senna) and osmotic laxatives (Movicol) (Linton, 2014). If laxative medication is used over a prolonged period, the financial implications for the individual, families and society can be significant (Sanchez and Bercik, 2011). The Current State of Health Care for People with Disabilities (National Council on Disability, 2009) identified that significant barriers maybe present for individuals with intellectual disability to receive proactive treatment; as health professionals may lack knowledge and have unawareness of onward referral pathways to relevant continence services.
Conclusion
Constipation is a common health condition with clinical symptoms that negatively affect quality of life. Many caregivers and health professionals lack knowledge about holistic assessment and simple treatment interventions to prevent constipation, such as alternation to fluid intake, diet, lifestyle and the need to be educated about the prevalence, incidence, signs and symptoms of constipation. Health promotion approaches and screening need to be proactively implemented for individuals with intellectual disability in order to promote a healthy lifestyle, improve nutritional intake, access to exercise programs, whereby improving general health, wellbeing and quality outcomes can be achieved.