Human Dimensions of Illness Experience
Introduction[edit | edit source]
In order to enhance the lives of the people they work with, it is essential physiotherapists consider the 'human' dimensions of illness and (dis)ability. This is perhaps particularly the case when people engaging in physiotherapy care have chronic, progressive conditions. 'Human' dimensions include the emotional[1], phenomenological[2], social, and moral[3] dimensions of illness experiences that combine and interact with the physical/biological dimensions. These aspects of the illness experiences can include factors such as dealing with disability stigma[4], creating meaningful shortened lives, and managing family interactions.[5]
There may often be a discrepancy between the importance clinicians place on these human dimensions and what actually happens in the clinical setting[5]. Focusing on these aspects living with illness and (dis)ability can improve outcomes for both the person with a disability and the clinician. And of course, it is not just the understanding between the clinician and the client that is important, interactions within the multi-disciplinary team also have an impact on care.
Below are some tips to help health professionals think about the human dimensions of living with progressive disability. The tips are based on a set of cards called 'Cards for Humanity' which were an output from a 3-year project[6][7][8] investigating how clinicians did (or did not) attend to the human elements of living with muscular dystrophy. They were designed for clinicians working in children's neuromuscular outpatient settings but have been usefully used in many settings including education and mentorship across disciplines.
The Cards for Humanity are available for download and printing:
For printing on an office printer: Cards for Humanity - Download PDF
For professional printing (indicate that you want them 'tarot card size' and laminated):
The cards are © 2019 Holland Bloorview Kids Rehabilitation Hospital. All rights reserved.
Some of the cards are discussed below:
Improving the Client/Clinician Experience[edit | edit source]
There are some topics that clinicians can find difficult to address, but are an important part of enhancing client's illness experiences. 'Difficult topics' can include discussions about:
- puberty, sex, sexuality, gender identity
- disability stigma, bullying, discrimination
- decline, death, dying
- disease progression, the future
It is important that clinicians find ways to explore these 'difficult topics' with clients in appropriate ways. Consider upskilling in these areas if you think you would find them challenging.
Critical Reflexivity[edit | edit source]
‘Critical reflexivity’ (as used here) refers to processes of examining the assumptions underlying clinical practice including “beliefs, values, social and systemic structures” and “how such dimensions influence our daily professional practice”[9]. There is an emphasis on considering the unintended assumptions and effects of any actions including how power operates through individual health practices, and broader systems of practice[10]. Critical reflexivity promotes change through challenging ingrained practices, roles and beliefs and values.[11][12]
- Reflexivity often requires time, space and facilitation.
- Clinicians need to create time to think about the human aspects of care.
- Both team and individual reflexivity is needed.
- Think about how clinical care can address the emotional, social and personal aspects of clients' lives.
Facilitating Change[edit | edit source]
- The burden of change often falls on clients/families.
- As a clinician, your voice has power.
- Important areas for change include:
- reducing disability stigma
- improved accessibility
- better service availability
Choosing the Right Language[edit | edit source]
Language has power and by acknowledging that you can improve the client’s experience and help to build a stronger connection. Misunderstandings, bias or feelings of not being heard can negatively impact on a client and how they openly and honestly they respond to their clinicians.
Improving the MDT Experience[edit | edit source]
Although each member of the MDT has the Client’s interest at the core of their care each clinician’s perspective will be different but all equally important. Finding ways to see the client from another perspective can help not only unity within the team but also a more client centred approach to management and care. By having an all-round view of a client’s needs from all members of the team can remove unnecessary assumptions which in turn results in clear, appropriate short and long term goals making it easier to streamline services and set effective timelines. Also by working in a more open and receptive environment can benefit the individual’s involved in a client’s care whether that is the clinicians, the family or care givers. It is important to feel part of team and to be able to ask for assistance if you need it. To be an effective care giver you also need to be able to seek support when needed.
Improving the Clinic Experience[edit | edit source]
- Flexibility
- Facilitate input from the clients and families.
- Balance 'best practice' care with individual family priorities.
- Be open to changing clinic routines.
- Foster creative solutions
Learning New Skills – Upskilling[edit | edit source]
Enhance the human aspects of client and family lives by improving understanding of:
- diversity and inclusion
- spirituality, meaning making, religion
- addressing and supporting 'negative' emotions
- self-care for clinicians
- coping with client death and decline
- sexuality and disability
Conclusion[edit | edit source]
In order to ensure that the client's experience meets their needs it is necessary to balance medical and human care. This can be achieved at looking at how we currently deliver healthcare in a different way. Examples of this can mean a totally different approach to our interaction with our clients. Some points to consider:
- Avoid sidelining 'human' aspects such as the emotional, personal, moral.
- Are routine assessments always needed?
- Create procedures to ensure 'human' aspects are considered and addressed.
Resources[edit | edit source]
The Cards for Humanity are available for download and printing here:
For printing on an office printer: Cards for Humanity - Download PDF
For professional printing (indicate that you want them 'tarot card size' and laminated):
The cards are © 2019 Holland Bloorview Kids Rehabilitation Hospital. All rights reserved.
References[edit | edit source]
- ↑ Setchell, J., Abrams, T., McAdam, L., & Gibson, B. E. (2019). Cheer* in healthcare practice: What it excludes and why it matters. Qualitative health research, 29(13), 1890-1903. doi:10.1177/1049732319838235
- ↑ Abrams, T., & Setchell, J. (2018). Living with death in rehabiliation: A phenomenological account. Human Studies, 41(4), 677-695.
- ↑ Abrams, T., Setchell, J., Thille, P., Mistry, B., & Gibson, B. E. (2018). Affect, intensity, and moral assemblage in rehabilitation practice. Biosocieties, Online first. doi:https://doi.org/10.1057/s41292-018-0115-2
- ↑ Setchell, J. (2017). What has stigma got to do with physiotherapy? Physiotherapy Canada, 69(1), 1-4.
- ↑ 5.0 5.1 Setchell, J., Thille, P., Abrams, T., McAdam, L., Mistry, B., & Gibson, B. E. (2018). Enhancing the human aspects of care with young people with Muscular Dystrophy: Results from a participatory qualitative study with clinicians. Child: Health, Care and Development, 44(2), 269-277. doi:doi:10.1111/cch.12526
- ↑ Setchell, J., Thille, P., Abrams, T., McAdam, L., Mistry, B., & Gibson, B. E. (2018). Enhancing the human aspects of care with young people with Muscular Dystrophy: Results from a participatory qualitative study with clinicians. Child: Health, Care and Development, 44(2), 269-277. doi:doi:10.1111/cch.12526
- ↑ Setchell, J., McAdam, L., Abrams, T., Thille, P., Mistry, B., & Gibson, B. E. A realist evaluation of a project to enhance the human aspects of DMD care. Forthcoming.
- ↑ Thille, P., Gibson, B. E., Abrams, T., McAdam, L., Mistry, B., & Setchell, J. (2018). Enhancing the human dimensions of children's neuromuscular care: Piloting a methodology for fostering team reflexivity. Advances in Health Sciences Education, May 26(1-23).
- ↑ Kinsella EA, Caty M, Ng S, Jenkins K. Reflective practice for allied health: Theory and applications. 2012.
- ↑ Setchell, J., & Dalziel, B. (2019). Using critical reflexivity to enhance clinical care: A clinian perspective. Journal of Humanities in Rehabilitation, May, 1-12.
- ↑ Thille, P., Gibson, B. E., Abrams, T., McAdam, L., Mistry, B., & Setchell, J. (2018). Enhancing the human dimensions of children's neuromuscular care: Piloting a methodology for fostering team reflexivity. Advances in Health Sciences Education, May 26(1-23).
- ↑ Tremblay MC, Richard L, Brousselle A, Beaudet N. Learning reflexively from a health promotion professional development program in Canada. Health promotion international. 2014 Sep 1;29(3):538-48.
