How nurses can apply spiritual care to improve the daily lives of people with learning disabilities and their families

In medieval Europe, including England and Wales, the role of the nurse was characterised as that of a member of a religious order. It was not until the Crimean War, when Florence Nightingale rose to prominence, that nursing became recognised as a respectable profession for women (Wyatt, 2019). In the 20th century, the nursing profession began to subscribe to post-Enlightenment ideologies. It was considered that religious paradigms were incompatible with health care, and thoughts of the spirit or soul were to be avoided due to their non-empirical nature (Garrett, 2021). Despite this absence of spirituality in nursing and healthcare research, holistic care has grown in influence through the decades. A holistic approach to nursing entails care that recognises the wholeness of a person, addressing their physical, psychological, social and spiritual needs (Thornton, 2019; McCann, 2018).

Research into spirituality and nursing

The increased awareness of the importance of holistic care has generated a new offshoot of research exploring spirituality in nursing (Cockell and McSherry, 2012). Studies by Sango and Forrester-Jones (2014) and Pike (2011) revealed that UK policy and nursing education fail to represent the spiritual needs of people with learning disabilities, which has resulted in daily spiritual care practices being overlooked and people's spiritual needs being ignored. Defining spirituality for empirical study has been found to be difficult due to its fluid and dynamic qualities.

Conceptual clarity in research is fundamental for the rigour of a study and therefore determines the quality of its outcomes. Reinert and Koenig (2013) stated that an effective definition for spirituality should focus on the measurable ritualism of religion, whereas Narayanasamy et al (2002) defined spirituality as an important bridge between the non-empirical factors such as an individual's sense of connectedness and identity. In practice settings, Hawthorne and Gordon (2020) defined spiritual care as an enabler to nursing responsibilities such as building therapeutic relationships and alleviating anxiety. However, few studies have begun to explore how the absence of spiritual care can lead to patient symptoms such as spiritual distress and pain (Smiechowski et al, 2021). To reinforce conceptual consistency, this article provides a working definition informed by the authors' understanding of all the relevant literature, which has guided the literature review:

‘Spirituality is a fundamental human right/need which has an interchangeable and extremely personal meaning to the individual. It possesses religious or non-religious structures and can enable an individual to make sense of the world and their identity within it; alongside connectedness with others, rituals, or a belief in something greater. It concerns itself with the spirit or soul, something neither tangible nor socially constructed. However, it can have significant impacts on the tangible experiences that come with being human, such as mental health and pain. Therefore, spirituality can be a vital condition in the process of receiving and providing care, ultimately improving quality of life.’

Spirituality's common association with existential questions about morality and the meaning of life means the focus of academic literature has been largely consigned to specific nursing settings such as palliative care and oncology. This has occurred to the detriment of other fields such as learning disability nursing. Furthermore, the few studies that consider spirituality in learning disability nursing have primarily focused on topics such as bereavement and death (Draper, 2012; Keenan and Mac Dermott, 2016). However, this focus on end-of-life care ignores the reality that most people with learning disabilities will require some form of professional care throughout their entire lives. A professional caregiver who maintains a focus on the daily spiritual needs of people with learning disabilities may contribute to improving their overall quality of life (Hu et al, 2019).

Ethics

This article focuses on the learning disabilities population, who continue to experience various ethical violations (Doody and Noonan, 2016). It was pertinent to critique the methods used and treatment given by previous researchers. The Critical Appraisal Skills Programme (CASP) Qualitative Checklist was used to assess whether the authors of the final studies had followed ethical guidelines regarding the method of their research, their viewpoint, and treatment of participants (CASP, 2018). To ensure non-maleficence, the final research studies involved reasonable adjustments to ensure their participants understood what they were agreeing to.

Due to this being a small-scale review, it was important to acknowledge the possibility of publication bias and overlooking ‘grey’ literature. This was caused by issues such as having limited access to articles and funding, and time restrictions. It is also imperative to declare any researcher bias, which would have compromised the veracity of the review.

The first author's interest in the research topic was inspired by personal experiences of witnessing the inclusion and exclusion of spiritual needs in learning disabilities settings, as well as their own spiritual affiliation and personal values. The research method also relied on their interpretation of the data. Therefore, to maintain impartiality, this study underwent peer-review from fellow research students and the supervisor, who is the second author.

Method

Research question

The research question (how can nurses apply spiritual care to improve the daily lives of people with learning disabilities and their families?) followed a Population, Exposure, Outcomes (PEO) format which is known to be compatible with qualitative studies (Aveyard et al, 2021). Using this format resulted in the identification of key words and search terms.

Literature review

The review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guideline (Page et al, 2021) and incorporated literature that explored the day-to-day spiritual care experienced by people with learning disabilities and their carers/families. The literature was sourced from credible clinical databases, such as PubMed, Summon, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Medline. To improve the rigour of the study, inclusion and exclusion criteria were established (Table 1).

The inclusion of people with learning disabilities as participants was particularly important to reflect the contribution they can make to their own care (Durell, 2016). Research between 2002 and 2022 in the UK was included because this represented an active period of research into spirituality. It also allowed for a specific focus on the unique cultural characteristics of spirituality in the UK (Pike, 2011). To refine the search for literature, Boolean terms were used that referred to synonyms of the key terms in the research question. These were spiritua* OR faith OR religio* AND ‘learning disability’ OR ‘intellectual disability’ OR ‘mental retardation’ OR ‘developmental delay’ AND nurs* OR healthcare OR support. Online or journal articles published in the English language were included.

During the process of literature screening, a PRISMA flowchart was used to enhance credible and systematic screening and presentation of the review literature. In total, 421 studies were initially identified.

Data extraction and screening

The search focused on qualitative studies as this aligned with the use of a narrative approach to the analysis and synthesis of data. By following the Lincoln and Guba (1985) framework, high-quality articles were guaranteed in the final full-text search in compliance with the criteria (Loh, 2013; Aveyard et al, 2021). For the process of data extraction, Thomas and Harden's (2008) approach to thematic synthesis was used. Once the purposive search was finished, the final 10 full-text research articles were selected through quality assurance and congruence to the criteria and research question (Table 2). These were used to identify the key concepts and data consistencies from which the descriptive and subthemes were developed and tabulated.

Findings and discussion

From the process of thematic synthesis, three key themes were established that provided the basis for the following discussion and presentation of findings (Tables 3, 4and5).

The daily nursing role in spiritual care

See Table 3. There can be a misconception that people with learning disabilities do not require time alone because they are dependent on others to meet their care needs. However, by denying an individual's right to privacy, nurses reduce the individual's opportunities for spiritual development through personal reflection.

In Narayanasamy et al's (2002) study, the nurses' care planning time alone for people with learning disabilities was essential for this development and reflected their understanding that receiving care is not always about an individual having something done to or for them. Further studies suggest adaptations to services, such as installing a sensory room or garden to encourage meeting this care need (Barber, 2011; Ramezani et al, 2014).

Turner et al (2004) reported on nurses using initial holistic assessments to identify home-based activities such as watching religious programmes on television to meet spiritual needs and inform the daily routines of people with learning disabilities. Although television can have antisocial impacts, the research findings suggest some programmes can help the individual to connect and express their religious beliefs through vicarious participation in prayer/worship within their own home. Conversely, overreliance on the role of television as a facilitator will prevent change from occurring within wider areas of society, such as greater acceptance of people with learning disabilities in places of worship (Barlott et al, 2020).

Studies by Hersov (2007) and Turner et al (2004) revealed that people with learning disabilities experiencing exclusion from spiritual settings perpetuates their detachment from religious rituals that are important to them. The Equality Act 2010 mandates services to provide reasonable adjustments based on a person's protected characteristics such as personal beliefs and a diagnosis of learning disabilities. This could also be applied to religious bodies, such as the Church of England, which has expressed a desire to implement reasonable adjustments to make their churches more accessible (Church Buildings Council, 2021). However, when compared with the legislative agenda, the influence of such actions on wider society or even on their own congregations, has not resulted in sustainable improvements for this population (Sango and Forrester-Jones, 2014). Moreover, most changes involve physical adjustments and overlook issues such as communication barriers. Therefore, the findings imply that there is another important responsibility of nurses, which is to advocate for people with learning disabilities in the public and political spheres. This role has been reiterated by organisations such as the Nursing Midwifery Council (NMC), which recognises advocacy among fundamental learning disability nursing competencies (NMC, 2021; 2022).

The role of spiritual care in connectedness and individuality

The findings on this theme are presented in Table 4. Randell and Cumella's (2009) findings suggest that places of worship occupy a principal role in maintaining friendships and providing a sense of belonging to a community for people with learning disabilities. Specifically, religious gatherings instil this by singing hymns and organising creative activities, refreshment breaks and pilgrimages. Sango and Forrester-Jones (2017) explored how an assisted living service with an official statement of faith acknowledged the importance of shared mealtimes. This appeared to promote ‘equal footing’ and ‘spiritual intimacy’ between the support workers and service users. Furthermore, shared mealtimes offer opportunities to socialise, creating a feeling of being at home, as well as having benefits for cognitive functioning (Bates, 2019). Despite these being activities that can be implemented in any learning disabilities service, the findings highlight how an approach to care that prioritises an individual's spiritual needs is more likely to create conditions to sustain these daily rituals. Participants with learning disabilities also expressed desires to receive more education in spirituality (Bates, 2019).

The literature review revealed a lack of research into the inclusion of spirituality in special educational settings. Despite spirituality not being a fundamental value for some, previous studies have explored the need to enable opportunities for people with learning disabilities to determine their own opinions and participate in spiritual expression (Ault, 2010; Baker, 2012). This can be related to the Human Rights Act 1998, which states that everyone holds a fundamental right to exist as an autonomous individual. However, as mentioned previously, this population is more likely to be perceived as having dependent positions, causing carers to overlook their humanity and ability to possess independent experiences of the world.

Pestana's (2015) study revealed how spirituality can also be about connecting with the inner self. The role it takes is important, rooting individuals in their sense of self and self-worth, affirming their identity in society. Furthermore, their findings represent spirituality as a constant force that does not fluctuate as psychological or physical states do, and therefore aids as a powerful coping strategy (Powrie and Swinton, 2016). In this way, participants were motivated to independently find opportunities for spirituality, which subsequently brought a sense of achievement to their week. Turner et al (2004) found spiritual rituals such as prayer merged the element of connectedness and introspection through characteristics such as altruism as they encouraged individuals to consider other people. Previous studies have explored how the provision of opportunities for people with learning disabilities to engage in altruistic activities empowers them to see their ‘disability’ as social capital and a catalyst for virtues such as empathy with others (Yanay-Ventura, 2019). The vital role people with learning disabilities play in volunteering in society is often neglected; however, the findings show how spirituality can inspire them to fulfil this role.

The role of families and carers in spiritual care

See Table 5. Regarding families and carers, spirituality is presented as part of the formation of coping strategies and attaching meaning to life. In Baines and Hatton's (2015) study, lacking control of life circumstances manifested in expressions of anger or fear at something greater than themselves. A transference of responsibility onto something bigger helped people to cope with, and gave a purpose to, adversity. Persistent advocating and caregiving can lead to carer burnout, therefore practising coping mechanisms proved extremely important for quality of life for families and people with learning disabilities. Through spiritual care, nurses can continue these practices by creating space for spiritual expression and understanding the familial impacts on the spiritual wellbeing of the individual with learning disabilities (Nascimento et al, 2016).

The findings reflect how spiritual beliefs have a fundamental role in the parental perspectives of a child with learning disabilities. It was evident that spiritual beliefs aided the process of acceptance in families, although this did not appear to determine understanding of their child's needs. In Durà-Vilà et al's (2010) study, some parents used words such as ‘angel’ and ‘gift’ to describe their child, and claimed they had supernatural gifts. Although the parents considered this to be a root to acceptance, it could be explored more deeply through Wolfensberger's (1996) work on categoric stereotypes, originally published in 1972. This includes labelling people with learning disabilities as ‘holy innocents’, reflecting beliefs of supernaturalism or purity that are infantilising and harmful to the individual (Mathews, 2017).

Sango and Forrester-Jones's (2017) study identified how people with learning disabilities were susceptible to having their carers' spiritual experiences projected onto them. The clients with learning disabilities were reported to be enjoying spiritual activities; however, particularly for non-verbal clients, concerns were raised about the accuracy of these observations. The misinterpretation of non-verbal communication forms a barrier to spiritual care because the individual's needs and autonomous thinking are overlooked. Studies have explored how person-centred practice, when combined with the intuition/‘gut-feeling’ of experienced carers who have developed therapeutic relationships, can be a crucial facilitator in making more accurate interpretations of the wants and needs of individuals who are non-verbal (Phelvin, 2013). This intuitive quality has been described as an attribute to spiritual care whereby characteristics such as self-awareness and empathy play a significant role in skill development (Ramezani et al, 2014).

Conclusion and recommendations

This study has revealed the crucial role nurses play in implementing spiritual care on a daily basis in learning disability settings. Alongside their clinical responsibilities, nurses should include individuals' spiritual activities such as watching televised worship in their care plans, as a means of simulating social connectedness, and time alone to nurture personal reflection. Nurses who build therapeutic relationships are better able to interpret spiritual needs and expressions, particularly for individuals who are non-verbal. Additionally, nurses who practise spiritual care will have the opportunity to promote values such as self-acceptance, altruism, self-awareness, and self-motivation in people with learning disabilities. The authors of this article also recommend that nurses act as key advocates in challenging and changing structural failures, some of which are highlighted in this article, such as the insufficient representation of spiritual needs of people with learning disabilities in legislation and nursing education. The article highlights additional failures and barriers to providing spiritual care such as the negative spiritual imagery sometimes imposed on people with learning disabilities, which can be harmful and, at times, infantilising. Furthermore, the difficulty of standardising definitions of spirituality for further research, perpetuates a lack of awareness of the spiritual needs of people with learning disabilities and leaves a crucial element of holistic care unexplored.

By addressing the barriers and learning from previous mistakes, further research and implementation of research findings can make spiritual care accessible to all by providing deeper insight into the care of people with learning disabilities who are non-verbal and facilitating the development of toolkits to indicate spiritual needs through the exploration of spiritual distress and pain. Moreover, research can influence people with learning disabilities' self-led development by exploring the impact of spiritual education in specialist education settings.

Finally, it is important to emphasise that these recommendations and progressions in research cannot be effectively achieved without an ethos within research that has a genuine passion to cultivate inclusivity by encouraging vital contributions from researchers with learning disabilities.

KEY POINTS

• Nurses can apply spiritual care daily by acknowledging the significance of time alone for people with learning disabilities in nurturing their spiritual development
• Nurses should give priority to the spiritual needs of people with learning disabilities by promoting a sense of belonging through communal meals and in places of worship
• It is important not to impose a nurse's own personal spirituality onto people with learning disabilities and embrace person-centred approaches that incorporate intuition and empathy to grasp their spiritual requirements
• The fundamental role of spiritual beliefs in the lives of families and carers of people with learning disabilities should be recognised, while avoiding harmful stereotypes

CPD reflective questions

• How can spiritual care benefit the quality of life for people with learning disabilities?
• What are the roles of health professionals in promoting spiritual care?
• What are the barriers to applying spiritual care in learning disabilities care settings?
• What are the impacts of spiritual care on health professionals and on family carers?