In Ireland the entire population profile is continuously changing, from paradigms of gender, ethnic groups, abilities, race, to specific scenarios and religious creed. A substantial percentage of the population today living in Ireland are non-national in origin, with the Irish Census for 2016 confirming that 17.2% of the population were foreign born (Central Statistics Office (CSO), 2017). The term ‘migrant’ is defined by the International Organization for Migration (IOM) as
‘Any person who is moving or has moved across an international border or within a state away from his or her habitual place of residence, regardless of the person's legal status, whether the movement is voluntary or involuntary, whatever the cause for the movement is or what the length of the stay is.’
This term covers a broad range of people: asylum seekers and refugees, travellers, Roma, documented and undocumented migrants; from individuals who have recently settled in Ireland to people who are resident in a country for years (Health Service Executive (HSE), 2018). Historically, when minority ethnic individuals arrived in a new country, the main focus of concern was on personal protection, shelter and safeguarding (HSE, 2018). Consideration is now given to a balance between addressing individuals' healthcare needs and supporting their social needs (HSE, 2018). Migrant communities who come to reside in another country can consist of dramatically diverse groups of individuals; however, it is commonly found that many are young in age profile and vulnerable in nature (Van Liemt, 2004). Healthcare organisations worldwide must implement strategic, operational change management plans and policies so that quality health outcomes are achievable for all individuals (Marquis and Huston, 2020).
Nationally and even internationally the precise proportion of individuals with intellectual disability is unknown, this is due to the under-representation of people with mild intellectual disabilities in official reports (Keenan and Doody, 2007). In 2016, the Irish Census recorded that 66 611 people had an intellectual disability, representing 1.4% of the population in Ireland, whereas the international prevalence rate for people with intellectual disability has been estimated to be 2% of the population (Department of Health (UK), 2001). Individuals with an intellectual disability are at higher risk of developing health problems and comorbidities such as bladder dysfunction compared with their peers in the general population (Petry et al, 2009; Doyle et al, 2016; Van Timmeren et al, 2016). Although urinary incontinence affects a large proportion of people with an intellectual disability, awareness and actions to address their incontinence needs are minimal (Lucas et al 2012; McCarron et al, 2013).
Article 1 of the United Nations (UN) Universal Declaration of Human Rights states:
‘All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.’
In addition to respecting this, health professionals must also adhere to their own professional code of conduct, which advocates that they adopt a non-judgemental approach, with equal respect for all individuals they engage with (Nursing and Midwifery Board of Ireland (NMBI), 2021). Within their role health professionals must not discriminate against individuals due to age, sex, race, religion, civil and family status, disability or being a member of the traveller community (NMBI, 2021). It is crucial that migrant individuals engage with health services to ensure their specific health needs are addressed and to make sure that a quality service is delivered to them, where attainable positive health outcomes are achieved (HSE, 2018) Strategic health planning in Ireland is based on the principles of accessibility, equality and social inclusion, thus promoting health care for all individuals in the population (HSE, 2015).
The aim of this article is to appraise the available evidence-based literature in relation to what is known about migrant individuals with an intellectual disability who experience a specific health problem: urinary incontinence.
Urinary incontinence
Urinary incontinence is a significant health problem in contemporary society, with 50 million people worldwide estimated to be affected (Kocak et al, 2005). Abrams et al (2017) argued that, globally, urinary incontinence is underreported, undiagnosed and overlooked by individuals, families, professionals, communities, policy makers, and global governments. Urinary incontinence is described as involuntary leakage of urine in an inappropriate place (Abrams et al, 2010). It can have psychological, social, sexual and emotional consequences such as anxiety, depression and social isolation, in addition to physical consequences such as incontinence-associated dermatitis, increased risk of falls and premature admission to residential care (Elstad et al, 2010; Visser et al, 2014; Wagg et al, 2015).
In general, the prevalence rates of urinary incontinence can range from 9% to 34% of the population (Perry et al, 2000; Thakar and Stanton, 2000). Prevalence rates vary depending on the definition used to describe incontinence and also vary by gender, with women reporting prevalence rates ranging from 8% to as high as 58% (Huang et al, 2006), while for men the prevalence rates are approximately half that of women (Buckley and Lapitan, 2010). Incontinence knows no age limits; this is evident with 10% of children aged 7 years experiencing nocturnal enuresis (Buckley and Lapitan, 2010). In a cross-sectional study in Turkey of 2353 primary school children, 8% displayed daytime wetting symptoms (Bolat et al, 2014).
Urinary incontinence is a common condition but many individuals do not seek help (Harris et al, 2007; Terzoni et al, 2011). In some cultures, seeking help for urinary incontinence may be seen as causing shame and embarrassment for their community (Isaksen, 2002; Tunc, 2008). Many individuals from minority ethnic groups do not report, or seek help for, urinary incontinence due to feelings of humiliation and the view that nothing can be done to promote, treat or even manage bladder dysfunction (Doshani et al, 2007). In some cultures, urination is theoretically a strictly secretive act and having an incontinence episode in public would be an outrageous occurrence (Isaksen, 2002). Marginalised minority women are extremely reluctant to request medical intervention for incontinence (Kinchen et al, 2003; Minassian et al, 2003; Horrocks et al, 2004; Elstad et al, 2010).
There are many reasons why migrants do not seek help for health conditions in general—not only cultural challenges but also the inability to speak the language of their new country of residence, financial difficulties, lack of health insurance and unawareness of availability of healthcare services or problems accessing these (Yoo and Kim, 2007; World Health Organization (WHO) Regional Office for Europe, 2010). Citizens of the European Union have advanced healthcare mechanisms and yet migrants face countless complexities in and challenges to accessing care (Doyle et al, 2009).
Positive interventions
Urinary incontinence can impact on an individual's quality of life at any age and indeed across all ethnic groups, thus continence promotion initiatives should be developed and delivered from potty training to pelvic floor exercise programmes (Australian Institute of Health and Welfare, 2013; Harris-Kojetin et al, 2013; Saga et al, 2013; Gorina et al, 2014; Higami et al, 2019). Positive, progressive innovative interventions are available to treat urinary incontinence, which can transform the lives of individuals experiencing bladder and bowel dysfunction. That said, health professionals must be cognisant of a person's cultural views, beliefs, attitudes and their distinctive demands and desires (Oladapo Adedokun and Wilson, 2004). The principles of compassion, care, privacy, partnership approach, respect and sensitivity should be applied to all continence care interventions from toileting, to changing disposable continence wear, to skin care (Health Information and Quality Authority, 2014). Knowledgeable health professionals can promote positive continence promotion interventions, rather than just passively prescribing continence wear products (Ostaszkiewicz, et al, 2020).
Albers-Heitner et al (2008) found 50% of individuals with urinary incontinence were passively prescribed disposable incontinence wear products, rather than proactively receiving assessment and positive continence promotion interventions. Individuals who experience urinary incontinence can introduce lifestyle interventions such as decreasing caffeine intake, consuming a diet high in fibre to prevent constipation as it can exacerbate urinary symptoms, introducing pelvic floor exercises, and bladder-retraining programmes (Du Moulin et al, 2005).
Urinary incontinence and intellectual disabilities
Urinary incontinence can affect all sections of the population; with symptoms having a devastating impact on health for the individual (Terzoni et al, 2011; Keenan et al, 2018). Equality of access and availability of continence promotion service is required regardless of the individual's ability or disability (Rogers and Patricolo, 2014; Keenan et al, 2018). Living with a disability is challenging and complicated, especially if the individual has a chronic medical condition as well, which may have negative impacts on both physical and psychological wellbeing (McGinnity et al, 2014). Urinary incontinence symptoms are multidimensional and can critically impact on an individual's holistic wellbeing, having physical, psychological, and social health consequences (Sinclair and Ramsay, 2011).
For example, for individuals with Down's syndrome, achieving continence control can be complicated, complex and challenging with incontinence episodes occurring regularly (Niemczyk et al, 2017). Urinary incontinence incidence for individuals with Down's syndrome are as high as 64%, in children aged 4-12 years (Niemczyk et al, 2017). Continence promotion interventions and toileting are essential to ensure individuals achieve dryness and cleanliness (Van Nunen et al, 2015)
Unfortunately individuals with intellectual disability are at higher risk of developing urinary incontinence, yet only minimal reference is made in the literature to this section of the population with bladder and bowel dysfunction (Lucas et al, 2012; Keenan et al, 2018). Wilkinson and Cerreto (2008) identified that women with intellectual disability receive inadequate care in relation to specific health issues such as menstruation, cervical and breast cancer screening, contraception and osteoporosis. However, there is a lack of research on urinary incontinence in women with intellectual disability.
Von Gontard (2013) identified that many children with special needs do not receive adequate continence promotion interventions and it is advocated in the literature that a multi-factorial treatment approach is developed, which would begin with a holistic continence assessment. In Ireland, the Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives (NMBI, 2021) outlines that nurses and midwives should respect all individuals irrespective of the person's age, gender, race, religion, family status or disability—this would include delivering quality continence care to migrants with an intellectual disability. More research is needed on the subject of urinary incontinence for all individuals with intellectual disability, so that health professionals can provide proactive incontinence care and achieve improved quality continence promotion outcomes.
Culture
In Europe there are many inequalities affecting individuals and the health of migrants can be threatened by poor living conditions, inability to access health care, or scant communication and language skills (Rechel et al, 2013; Van Loenen et al, 2018) Rightfully it is acknowledged that all individuals residing in European states have the right to health care; however, this can be challenging for many migrants (WHO Regional Office for Europe, 2016). Recently, there has been an increased interest in the health of migrants worldwide (O'Donnell et al, 2016). This may be due to the rise in the need for migrant workers owing to labour shortages and the decrease in birth rates in some nations (O'Donnell et al, 2016).
All individuals have their own specific cultural uniqueness. Culture can be defined as the:
‘Learned and shared knowledge, beliefs and rules that people use to interpret experience and to generate social behaviour, it can permeate multiple domains across society.’
Kleinman et al (1978) outlined that illness can be influenced by the person's cultural circumstances, which echoes a previous definition of illness, which claimed that:
‘Illness represents personal interpersonal and cultural reactions to disease or discomfort.’
Health care should be delivered in a culturally sensitive style that combines compassion, consideration and empathy for the individual's values, aspirations and ambitions (Lindsay et al, 2014). Fortunately some migrants settle and integrate into Irish life effectively; this is enhanced if individuals have equality of access to health services (HSE, 2018). Access to health care for all individuals is enshrined within international legislation, rights and rules such as the European Charter of Fundamental Rights (Rechel et al, 2013). However, although such rights may be set down legally in government documents, practically the picture maybe very different, for culturally vulnerable migrants (Mladovsky et al, 2012).
A family tool such as a culturagram is a mechanism for child health professionals to build up a picture of migrant parents' experiences and understanding of lived experiences, accomplishments, challenges and complexities (Congress, 2008). The culturagram assists in providing individuality and independence concepts for families who have distinctive cultural needs (Congress and Kung, 2020). Health professionals should have enhanced engagement with migrant parents who have a child with additional needs, thus increasing parents' knowledge and understanding about healthcare requirements, to aid in achieving parents' and children's hopes, aspirations and expectations (Calder, 2017). Health professionals need to have cultural competences to increase connection, inclusion and teamwork with families who have a member with a disability (Calder, 2017). Another framework such as Kleinman's Explanatory Model (Kleinman, 1980) gives health professionals structure on parents' beliefs, views and thoughts about their child who has a disability.
It is indisputable that people with intellectual disability experience health inequities (Lennox et al, 2015). Person-centeredness care principles should be established, and embraced to enhance a partnership process between health professionals and the individuals with intellectual disability to provide effective inclusive objectivity to their health (National Disability Authority, 2005; McCarron et al, 2013).
On the wider scale, governments should develop policies, procedures and protocols to ensure equal opportunities are provided to all individuals no matter what their diversities are and regardless of their country of origin (Hegarty, 2017). Policy makers need to cease cutting financial funding to health services and offer financial assistance and support to deliver quality care to the most vulnerable in society, promoting good health outcomes (O'Donnell et al, 2016).
Communication
The health of migrants is a critical concern for each and every citizen within society. However, intersectional, multidisciplinary collaboration is essential with all stakeholders to ensure the evolution of quality health and wellbeing services, thus reducing inequalities for the migrant population (Faculty of Public Health Medicine (FPHM), 2016). Disparities for migrants' health and wellbeing cannot be dealt with in isolation, as inequalities significantly impact on social fairness and cross-sectional factors such as education, housing, employment and childhood development (FPHM, 2016). The Irish Census for 2016 (CSO, 2017) identified that 612 012 residents in Ireland spoke a foreign language at home; not being proficient in the English language deepens difficulties in accessing health services, optimum verbal dialogue is the most instinctive means of communication for all people (McGurk and MacDonald, 1976).
Central to delivering and receiving quality health care is the concept of effective and efficient communication (FPHM, 2016). It is essential that health professionals have the ability to communicate effectively to ensure quality health outcomes for service users (Donnelly and Neville, 2008). Unfortunately, the availability of translation/interpreter services is inconsistent across health services; subsequently this lack of interpretation provision creates communication obstacles, which builds barriers between providers and service users (FPHM, 2016). Communication is a central component of healthcare interactions with migrant parents of children with disability (Calder, 2017). Knowledgeable, accessible translation services are essential and these facilities should be offered and obtainable for all families who need this service (Calder, 2017).
Primary care health services should not only be clinically focused, services must also encapsulate cultural and linguistical competences to facilitate migrants integrating into their new community (FPHM, 2016). Communication between health professionals and users of healthcare services needs to develop into a therapeutic interactive relationship to reduce helplessness and vulnerability for individuals, and facilitate an environment where joint decisions about personal care and proactive treatment occur (Donnelly and Neville, 2008). The use of an interpreter is an essential method for communication for nurses when engaging with migrants who require services; however, it is reported that robust education is necessary for nurses to effectively and efficiently use interpretation services (Salavati et al, 2019). In addition to migrants' needs, health professionals require support and assistance to enhance communication links, to ensure quality health outcomes for individuals, their families and the collective communities (HSE, 2018).
Incontinence symptoms for individuals may cause dejection and depression so it is imperative that all health professionals are aware of the need to communicate compassionately and caringly, to assess, promote and manage incontinence symptoms (Yoo and Spencer, 2018). Effective communication is essential, with the use of user–friendly words and the avoidance of technical terminology (Rantell et al, 2016). For many individuals, urinary incontinence is a discomforting and distressing condition to discuss with health professionals (Wagg, 2015). Clear, concise and confidential communication, collaboration and consultation between health professionals and individuals are required for proactive intervention strategies, rather than passive incontinence management interventions (Stewart, 2018).
Writing this article prompted the development of an ‘easy read’ leaflet, ‘Going To The Toilet’, which will assist individuals with an intellectual disability, and their families, from migrant communities. Irrespective of race, religion, culture, nationality, or ability, all individuals who experience urinary incontinence should have clear, easy-to-understand information to overcome the distressing symptoms of urinary incontinence.
Conclusion
Urinary incontinence can dramatically impact on an individual's physical, psychosocial and emotional wellbeing; resulting in decreased quality of life. However, in addition to the personal cost of incontinence, the financial impact for society is also detrimental. For individuals who migrate to a foreign country there can be a negative impact on their health and wellbeing due to the disparities in health services. Realistic, valid reasons have been reported for why migrants face difficulties accessing healthcare services, from language barriers and lack of knowledge on service availability to cultural challenges. For migrant individuals who have an intellectual disability, the capability to engage with health services can be even more challenging and complex. Nationally and internationally robust evidence-based healthcare interventions should be delivered to all individuals no matter their ability, race, creed or religion, to ensure integration of entire populations into society.
There is a long history of migrants residing in Ireland, however it is important to be aware of their health needs in the area of continence promotion and management of incontinence. Health professionals must openly acknowledge deficiencies and discrepancies in their knowledge of evidence-based continence care to the migrant individual with intellectual disability. Unfortunately promotion of continence and management of incontinence education programmes is scant, sparse and poorly resourced. Further research and educational information is required for health professionals, carers, families and individuals on the subject of urinary incontinence.
KEY POINTS
- Urinary incontinence is a common condition that can impact on individuals' health and wellbeing
- Migrant individuals may not even openly report, discuss or seek help to treat and manage leakage of urine. This is further exacerbated if the individual has an intellectual disability
- Health professionals must have the clinical knowledge, ability, skillfulness and competence to promote and manage urinary incontinence for the migrant population with an intellectual disability to ensure quality health outcomes
CPD reflective questions
- What challenges may individual migrants face when trying to access health care once they arrive in a new country?
- How can nurses acknowledge the cultural needs of individuals with intellectual disability who experience incontinence?
- Drawing on your clinical experience and education, what implications does urinary incontinence have for an individual's health and wellbeing?
- How can communication be enhanced between health professionals and individuals with intellectual disability who experience incontinence?