The purpose of this project is to highlight the often-overlooked issue of intimate and personal care and explore how we can improve it to ensure that individuals with severe and profound intellectual disabilities receive the compassionate, dignified and respectful care they deserve.
In 2009, Julie completed her PhD on ‘Intimate and Personal Care in the Lives of People with Severe and Profound Intellectual Disabilities’. She published papers on her findings (in the maiden name of Clark) in nursing and learning / intellectual disabilities journals and has since then remained interested in this key area of support as an opportunity to enhance the quality of care and quality of life for individuals. At NAC, we believe that further work is needed to improve resources and training for this critical aspect of care and support.
For many of us, intimate and personal care—such as bathing, using the toilet, and getting dressed—is something we do independently and in private. But for individuals with severe and profound intellectual disabilities, these tasks require assistance. While anyone can face the need for intimate and personal care at different times, for some people it becomes a regular, daily experience.
What Is Intimate Care and Personal Care?
Intimate and personal care includes care which requires direct or indirect contact with, or exposure of, private parts of the body.
Though there is some overlap, the terms are generally used as follows:
It can also involve other forms of physical care, sometimes referred to as ‘personal care’, including:
- Intimate care refers to tasks involving direct or indirect contact with areas of the body that are typically considered private. This includes activities such as using the toilet, bathing, showering, washing intimate areas, and changing continence and sanitary products.
- Personal care refers to physical care that may not involve direct contact with intimate body parts such as hand washing, hair care and changing outer layers of clothing.
The Impact of Intimate and Personal Care on Quality of Life
Intimate and personal care can take up a significant portion of a person’s day. The way in which these tasks are carried out can profoundly affect their quality of life. Many people with intellectual disabilities enjoy the physical and sensory benefits of personal care—such as a warm bath—but this can only be enjoyed if the care is delivered thoughtfully and respectfully. On the other hand, poor hygiene or rushed, impersonal care can lead to feelings of discomfort, frustration, and even fear and humiliation.
Despite its importance, intimate and personal care has historically been neglected in both policy and practice. Research is limited, and many care providers lack sufficient training and frameworks for reflective practice in this area.
Why Is Good Intimate and Personal Care So Important?
For people with intellectual disabilities, intimate and personal care is not just about staying clean—it is about comfort, health, and social inclusion. When care is carried out with sensitivity and respect, it can enhance a person’s self-esteem, contribute to well-being, and a sense of belonging and inclusion. However, when care is rushed, impersonal, or done without regard for personal preferences, it can result in feelings of violation, anxiety and loss of dignity.
Key Factors That Affect Intimate and Personal Care
- Biological Factors:Proper hygiene practices are essential for health and well-being, particularly for individuals with incontinence or physical disabilities. Carers must be trained in basic anatomy and hygiene practices to ensure the individual’s skin is protected from infection and irritation.
- Cultural and Social Considerations:People from different cultural backgrounds may have specific practices and preferences when it comes to intimate and personal care. These cultural norms should be respected, and care should be tailored to meet the individual’s personal and cultural needs. This might include practices like showering instead of bathing or using particular products for skin care.
- Psychological Impact:The psychological effects of intimate and personal care are often overlooked. It’s important for carers to be aware of how such tasks may affect a person’s sense of self. Respecting preferences, providing choices, and ensuring that the person feels as in control as possible can make a significant difference in how they experience care.Key Factors That Affect Intimate and Personal Care
What Needs to Change?
Intimate and personal care needs to be recognised as a skilled and valuable part of care and support work. Carers must receive appropriate training to understand the biological, cultural, and psychological aspects of care. This includes learning how to maintain hygiene in a way that preserves dignity, respecting personal preferences, and supporting individuals in having as much autonomy as possible.
Organisations must also implement clear policies and procedures to guide carers in delivering sensitive, personalised care. This involves ensuring that staff are adequately trained, that sufficient time is allocated for care, and that a person-centred approach is maintained at all times.
Looking Forward
Through this project, we aim to create a space for families, carers, and service providers to come together and share their experiences, ideas, and solutions for, where necessary, improving intimate and personal care practice. We want to ensure that everyone involved in providing care has the tools, knowledge, and support to deliver the best possible care.
By developing greater awareness, resources, and training around intimate and personal care, we can foster a more informed and empathetic approach to care. Training carers and support staff to understand the biological, psychological, and cultural factors involved could enhance their ability to provide dignified and respectful care. Furthermore, equipping families and care providers with better resources and guidance will allow them to respond more effectively to the unique needs of individuals who require support to meet their intimate and personal care needs.
The outcomes of such improvements could be far-reaching. As carers become more skilled in offering person-centred care, the individuals they support could experience greater comfort, dignity, and autonomy. This will ultimately contribute to a stronger sense of inclusion and improved quality of life for individuals with intellectual disabilities.
These changes, however, will not be fully realised without the input of those who are directly affected by intimate care practices—family members and carers themselves. One parent’s perspective on the challenges and experiences of intimate care, along with their support for the development of a focused project in this area, highlights the real-world significance of these issues. Here, they share valuable insights and examples from their personal journey, underscoring the need for change and the impact that improvements in care can have on both individuals and their families.
Written by Julie Calveley
A Parent’s Perspective
Introduction
Personal and intimate care is more than just meeting basic hygiene needs; it is about fostering trust, dignity, and emotional well-being. For individuals with profound disabilities, like our son Joel, personal care must be carried out with sensitivity, consistency, and respect. Here we share some of our experiences, insights, and values regarding intimate care, aiming to raise awareness and encourage thoughtful discussion.
Building Trust and Connection
One of the most critical aspects of personal care is ensuring the individual feels safe and secure. For Joel, a trusting relationship with his caregivers is essential. When a new carer joins us through an agency, we arrange an initial meet-and-greet. This allows us, as parents, to assess whether the person is a good fit for Joel’s specific needs and to explain the bespoke nature of his care routine. While this process helps ensure a better match, we have still encountered challenges along the way.
Cultural Differences and Care Practices
Recently, we had a carer from another country who approached intimate care differently to the way Joel is used to. Addressing our concerns respectfully, we explained why we preferred a different approach. Open communication ensured that Joel’s dignity and safety were maintained while fostering mutual understanding with the carer.
Routine and Communication
A predictable routine helps reduce anxiety and provides reassurance. Using visual aids such as picture cards, objects of reference (e.g., a toy duck for bath time), and consistent verbal cues strengthens understanding, his sense of safety and autonomy.
Talking to Joel throughout his care, much like a running commentary, reassures him and encourages interaction. Simple, respectful explanations help him feel engaged and valued.
Hoisting is an integral part of Joel’s care. To help him feel prepared and involved, we use consistent verbal cues, saying “Joel up” when lifting and “Joel down” when lowering. Predictability makes transitions smoother and reduces stress.
Techniques such as Intensive Interaction—tuning-in and joining in with his sounds, facial expressions, or laughter, where appropriate—make personal care a more enjoyable and positive experience.
We also use playful cues to make care moments enjoyable. For example, during bath time, we remove his socks while saying, “Ting!” followed by a light hearted “Phew, smelly socks!” This simple routine makes the process fun and helps Joel anticipate what’s coming next.
Enabling Autonomy
Although Joel requires assistance, we actively seek for ways to involve him in his own care. Using a ‘hand-over-hand’ technique, he can participate in washing himself, which also helps him develop an awareness of his body and the process of personal care. Additionally, by observing and responding to his cues and preferences, we enable him to exert some control over his care routine, fostering a greater sense of agency and autonomy. For example, when given a choice between two toys, Joel selects with eye-pointing—an empowering way to promote decision-making.
Incorporating Physiotherapy into Personal Care
Intimate care routines also provide opportunities for gentle physiotherapy. Stretching or basic yoga movements help relieve discomfort from prolonged sitting. Since childhood, we have incorporated these movements into Joel’s routine, making them a natural and beneficial part of his care.
Body Scanning and Health Monitoring
Personal care provides a valuable opportunity to check for sores, bruises, or redness that may indicate issues with Joel’s posture or equipment. Regular monitoring allows us to identify and address concerns early, ensuring his comfort and well-being.
Adolescence and Changing Needs
As Joel has grown, we have adapted his care routine. At 16, we introduced a morning wash-and-deodorant routine, ensuring his comfort while accommodating his sensory sensitivities. For instance, we use a roll-on deodorant rather than a spray, as sudden noises, such as is made with a spray can, can startle him.
The Power of Positive Touch
From an early age, we have embraced massage, reflexology, and Reiki to promote relaxation and emotional well-being. A professional therapist initially guided us, and now we pass this knowledge on to Joel’s carers. Positive touch—whether through hugs, massages, or gentle reassurance—helps reinforce a sense of comfort and connection. We always look for signs and signals from Joel to inform us that he wants to receive physical contact.
Supporting Individuals with Visual Impairments
For Joel, who has a visual impairment, verbal cues, consistent routines, and sensory associations can help him feel more at ease. A calm and confident approach from caregivers is essential; if a carer is anxious, Joel may sense it, making the experience more stressful for both. Simple strategies such as playing relaxing music or using essential oils during bath time can help to create a soothing atmosphere.
Integrating Personal Care into Training
Our carers are expected to attend manual handling training which often focuses on physical safety. Incorporating training on personal care could enhance the experience for both the carer and the individual receiving care. By including person-centred strategies in training, caregivers can develop a more holistic and respectful approach.
Conclusion
Personal and intimate care is a fundamental part of daily life for individuals like Joel. While it is an essential task, it can also be a meaningful experience when approached with respect, communication, and creativity. By integrating small, thoughtful actions—whether through sensory play, physiotherapy, or positive touch—we can make personal care not just necessary but enriching for the individual’s overall well-being.
Written by Jane Godfrey
Publications
Clark, J. (2006) Providing Intimate Care: The views and values of carers. Learning Disability Practice, 9(3), 10-15.
Clark, J. (2006) Intimate Care: Theory, research and practice. Learning Disability Practice, 9(10), 12-17.
Clark, J and Gates, B. (2006) Care Planning and Delivery for People with Profound Intellectual Disabilities and Complex Needs. In B. Gates (Ed.) Care Planning and Delivery in Intellectual Disability Nursing. Oxford: Blackwell Publishing.
Clark, J. (2007) Intimate Care in the Lives of People with Severe Intellectual Disabilities. Paper Presented at the Dignity Conference, Thames Valley University, London.
Clark, J. (2008) Privacy and Dignity: Research findings from a study of intimate care in the lives of people with severe and profound intellectual disabilities. Paper presented at The Association for Continence Advice Annual Conference, 13-14 May, Glasgow, Scotland.
Clark, J. (2008) Intimate Care in the Lives of People with Severe and Profound Intellectual Disabilities: A qualitative study. Unpublished Thesis: University of West London, formerly Thames Valley University.
Clark, J. (2009) Providing Intimate Continence Care for People with Learning Disabilities. Nursing Times, 105(6), 26-28.
Clark, J. (2010) Defining the Concept of Dignity and Developing a Model to Promote its Use in Practice. Nursing Times, 106(20), 16-19.