Human Dimensions of Illness Experience: Difference between revisions

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== introduction ==
<div class="editorbox"> '''Original Editor '''-  [[User:Rewan Elsayed Elkanafany|Rewan Elsayed Elkanafany]] and [[User:Kim Jackson|Kim Jackson]] '''Top Contributors''' - {{Special:Contributors/{{FULLPAGENAME}}}}</div>
studying human-beings nature  is a complex  thing.It is not a matter of black and white thing , there are too many aspects  to be considered while getting to know the human nature and there are more than just medical problems that people face while having an illness .there are emotional, social, cultural and  even personal dimensions as well.
== Introduction ==
In order to enhance the lives of the people they work with, it is essential for health professionals to consider the "human" dimensions of illness and (dis)ability.  This is perhaps particularly the case when people are consulting healthcare providers for support with chronic and/or progressive conditions.  "Human" dimensions include the emotional<ref>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</ref>, phenomenological<ref>Abrams, T., & Setchell, J. (2018). Living with death in rehabilitation: A phenomenological account. ''Human Studies, 41''(4), 677-695. </ref>, social, existential, and moral<ref>Abrams, T., Setchell, J., Thille, P., Mistry, B., & Gibson, B. E. (2018). Affect, intensity, and moral assemblage in rehabilitation practice. ''Biosocieties, Online first''. [https://doi.org/10.1057/s41292-018-0115-2 doi:https://doi.org/10.1057/s41292-018-0115-2]</ref> dimensions of illness experiences, which combine and interact with the physical/biological dimensions. These aspects of the illness experiences can include factors such as dealing with disability stigma<ref>Setchell, J. (2017). What has stigma got to do with physiotherapy? ''Physiotherapy Canada, 69''(1), 1-4. </ref>, creating meaningful shortened lives, living well with reduced physical function and managing family interactions.<ref name=":0">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 </ref>


=== what is illness experience?<ref name=":0">https://onlinelibrary.wiley.com/doi/abs/10.1002/9781405165518.wbeosi015.pub2</ref> ===
There may often be a discrepancy between the importance clinicians place on these human dimensions and what actually happens in the clinical setting<ref name=":0" />.  Focusing on these aspects of living with illness and (dis)ability, can improve outcomes for both the person experiencing illness/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 the level and quality of care.
The phrase “illness experience” refers to the ways in which people define and adjust to perceived interruptions in their health.


=== is there a difference between illness &disease?<ref name=":0" /> ===
Below are some tips to help health professionals reflect on the human dimensions of living with a chronic or progressive health condition. The tips are based on a set of cards called "Cards for Humanity" (available for printing - see below) which were an output from a 3-year project<ref>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 </ref><ref>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''. </ref><ref>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). </ref> 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 useful in many settings including education and mentorship across various disciplines. We have also provided a poster which encourages physiotherapists to better attend to the human aspects of care (available for printing - see below). This comes from a separate but related project with adults with low back pain and physiotherapists.
“Illness” refers to people's lay or subjective definitions of health problems, while “disease” refers to professional or objective definitions of health problems, which are based on signs and symptoms. The value of this distinction is that it allows us to acknowledge that people can be ill without having a disease and can have a disease without being ill.


=== Human dimensions of illness experience: ===
== Some Examples from the 'Cards for Humanity' ==


==== emotional :<ref>Turner J, Kelly B. Emotional dimensions of chronic disease. Western Journal of Medicine. 2000 Feb;172(2):124.</ref><ref>Dimsdale JE. Psychological stress and cardiovascular disease. Journal of the American College of Cardiology. 2008 Apr 1;51(13):1237-46.</ref> ====
=== Learning to Attend to the "Human" Aspects : Up-skilling ===
The emotional dimensions of chronic conditions are often overlooked when medical care is considered.
[[File:CFH 13 Upskilling Front.png|frameless|229x229px|left]]
Clinicians can enhance the human aspects of client and family lives by improving their 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.


Patients with chronic conditions often have to adjust their aspirations, lifestyle, and employment. Many grieve about their predicament before adjusting to it. But others have protracted distress and may develop psychiatric disorders, most commonly depression or anxiety. & it is also known that Chronic stress puts you at higher risk of heart disease and digestive problems.
=== Critical Reflexivity ===
[[File:CFH 9 Critical Reflexivity Front.png|frameless|229x229px|left]]
"Critical reflexivity" (as understood within this context) 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”<ref>Kinsella EA, Caty M, Ng S, Jenkins K. Reflective practice for allied health: Theory and applications. 2012.    </ref>.  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<ref>Setchell, J., & Dalziel, B. (2019). Using critical reflexivity to enhance clinical care: A clinician perspective. ''Journal of Humanities in Rehabilitation, May'', 1-12. </ref>. Critical reflexivity promotes change through challenging ingrained practices, roles and beliefs and values.<ref>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). </ref><ref>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.
</ref>
* 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 are needed.
* Think about how clinical care can address the emotional, social and personal aspects of clients' lives.


Healthy coping implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful
=== Creating Social Change ===
[[File:CFH 11 Social Change Front.png|frameless|229x229px|left]]The burden of changing systems and structures which disadvantage people with (dis)abilities, often falls on clients and/or families. As a clinician, your voice has power.


==== social:<ref>https://www.sciencedirect.com/topics/medicine-and-dentistry/social-determinants-of-health</ref><ref>https://www.rwjf.org/en/library/research/2010/11/executive-summary/the-social-construction-of-illness.html</ref><ref name=":1">Armenakis A, Kiefer C. Social & cultural factors related to health, part A: recognizing the impact. University of Califormia San Francisco and Child Family Health International San Franciso, CA. 2007.</ref> ====
Important areas for change include:
Social determinants of health drive health differences or inequalities among social groups and include race, ethnicity, gender, socioeconomic status, geographic inequalities, and having a specific health condition. it determine the availability, accessibility, and affordability of services even when they are provided.
* Reducing disability stigma;
* Improved accessibility;
* Better service availability.


==== cultural:<ref name=":1" /> ====
=== Difficult Topics ===
culture is a system of thoughts & behaviors shared by a group of people . Our cultural backgrounds have a great impact on our lives ,Cultures conceptualize health and illness in different ways. Culture influences how health is viewed, how symptoms are expressed and how help is sough
[[File:CFH 5 Difficult Topics Front.png|frameless|230x230px|left]]There are some topics which clinicians can find difficult to address, but are an important part of enhancing the 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 up-skilling in these areas if you think you would find them challenging.
 
=== Assumptions ===
[[File:CFH 8 Assumptions Front.png|frameless|229x229px|left]]
Everyone has their own assumptions about what are the best ways to approach healthcare practice and living well with illness and (dis)ability. This can sometimes mean that we can unintentionally ignore the perspectives and preferences of clients and families.  If clinicians are aware of their assumptions, they can work well with others to decide what is helpful. Assumptions:
* Are reflected in the goals that clinicians think to be important or valuable (e.g. independence, activity, physical safety).
* Might differ between/amongst clinicians and clients and families.
* Assumptions can affect perceptions and impact care. 
* '''They can signal to clients what is expected, accepted and considered 'normal'.'''
 
Sometimes clinicians need to let go of their assumptions to provide good care!
=== Language is Important ===
[[File:CFH 10 Language Front.png|left|frameless|229x229px]]
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 a client and the interactions between clients and clinicians. Where possible:
* Foster an awareness of the unintended effects of what you say.
* Reduce the assumptions and biases underpinning what you say.
'''Words do matter!'''
 
<br>
== Resources ==
The Cards for Humanity are available for download and printing here:
 
'''NB: The cards are © 2019 Holland Bloorview Kids Rehabilitation Hospital. All rights reserved.'''
* '''For printing on an office printer:''' [[:File:MD cards office printing.pdf|Cards for Humanity Office Printing - Download PDF]]
* '''For professional printing (indicate that you want them 'tarot card size' and laminated):''' [[:File:MD cards Professional Printers.pdf|Cards for Humanity Professional Printing - Download PDF]]
The poster 'How Can Physios Enhance Lives' is available for download and printing here in various sizes:
 
'''NB: Use professional printer and have it laminated, but also prints ok on office computers'''
====English====
* '''A1:''' [[:File:How Can Physios Enhance Lives A1 01.pdf|How Can Physios Enhance Lives - Download PDF]]
* '''A2:''' [[:File:How Can Physios Enhance Lives A2 01.pdf|How Can Physios Enhance Lives - Download PDF]]
* '''A3:''' [[:File:How Can Physios Enhance Lives A3 01.pdf|How Can Physios Enhance Lives - Download PDF]]
====Portuguese====
* '''A1:''' [[:File:Enhancing-care-poster-Portuguese A1.pdf|How Can Physios Enhance Lives (Portugese) - Download PDF]]
* '''A2:''' [[:File:Enhancing-care-poster-Portuguese A2.pdf|How Can Physios Enhance Lives (Portugese) - Download PDF]]
* '''A3:''' [[:File:Enhancing-care-poster-Portuguese A3.pdf|How Can Physios Enhance Lives (Portugese) - Download PDF]]
 
====French====
* '''A1:''' [[:File:Enhancing-care-poster-French A1.pdf|How Can Physios Enhance Lives (French) - Download PDF]]
* '''A2:''' [[:File:Enhancing-care-poster-French A2.pdf|How Can Physios Enhance Lives (French) - Download PDF]]
* '''A3:''' [[:File:Enhancing-care-poster-French A3.pdf|How Can Physios Enhance Lives (French) - Download PDF]]
== References ==
<references />
[[Category:Communication]]
[[Category:Projects]]

Latest revision as of 09:13, 14 May 2021

Original Editor - Rewan Elsayed Elkanafany and Kim Jackson Top Contributors - Kim Jackson, Jenny Setchell, Admin, Rewan Elsayed Elkanafany, Simisola Ajeyalemi and Amanda Ager

Introduction[edit | edit source]

In order to enhance the lives of the people they work with, it is essential for health professionals to consider the "human" dimensions of illness and (dis)ability. This is perhaps particularly the case when people are consulting healthcare providers for support with chronic and/or progressive conditions.  "Human" dimensions include the emotional[1], phenomenological[2], social, existential, and moral[3] dimensions of illness experiences, which 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, living well with reduced physical function 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 of living with illness and (dis)ability, can improve outcomes for both the person experiencing illness/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 the level and quality of care.

Below are some tips to help health professionals reflect on the human dimensions of living with a chronic or progressive health condition. The tips are based on a set of cards called "Cards for Humanity" (available for printing - see below) 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 useful in many settings including education and mentorship across various disciplines. We have also provided a poster which encourages physiotherapists to better attend to the human aspects of care (available for printing - see below). This comes from a separate but related project with adults with low back pain and physiotherapists.

Some Examples from the 'Cards for Humanity'[edit | edit source]

Learning to Attend to the "Human" Aspects : Up-skilling[edit | edit source]

CFH 13 Upskilling Front.png

Clinicians can enhance the human aspects of client and family lives by improving their 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.

Critical Reflexivity[edit | edit source]

CFH 9 Critical Reflexivity Front.png

"Critical reflexivity" (as understood within this context) 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 are needed.
  • Think about how clinical care can address the emotional, social and personal aspects of clients' lives.

Creating Social Change[edit | edit source]

CFH 11 Social Change Front.png

The burden of changing systems and structures which disadvantage people with (dis)abilities, often falls on clients and/or families. As a clinician, your voice has power.

Important areas for change include:

  • Reducing disability stigma;
  • Improved accessibility;
  • Better service availability.

Difficult Topics[edit | edit source]

CFH 5 Difficult Topics Front.png

There are some topics which clinicians can find difficult to address, but are an important part of enhancing the 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 up-skilling in these areas if you think you would find them challenging.

Assumptions[edit | edit source]

CFH 8 Assumptions Front.png

Everyone has their own assumptions about what are the best ways to approach healthcare practice and living well with illness and (dis)ability. This can sometimes mean that we can unintentionally ignore the perspectives and preferences of clients and families. If clinicians are aware of their assumptions, they can work well with others to decide what is helpful. Assumptions:

  • Are reflected in the goals that clinicians think to be important or valuable (e.g. independence, activity, physical safety).
  • Might differ between/amongst clinicians and clients and families.
  • Assumptions can affect perceptions and impact care.
  • They can signal to clients what is expected, accepted and considered 'normal'.

Sometimes clinicians need to let go of their assumptions to provide good care!

Language is Important[edit | edit source]

CFH 10 Language Front.png

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 a client and the interactions between clients and clinicians. Where possible:

  • Foster an awareness of the unintended effects of what you say.
  • Reduce the assumptions and biases underpinning what you say.

Words do matter!


Resources[edit | edit source]

The Cards for Humanity are available for download and printing here:

NB: The cards are © 2019 Holland Bloorview Kids Rehabilitation Hospital. All rights reserved.

The poster 'How Can Physios Enhance Lives' is available for download and printing here in various sizes:

NB: Use professional printer and have it laminated, but also prints ok on office computers

English[edit | edit source]

Portuguese[edit | edit source]

French[edit | edit source]

References[edit | edit source]

  1. ↑ 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
  2. ↑ Abrams, T., & Setchell, J. (2018). Living with death in rehabilitation: A phenomenological account. Human Studies, 41(4), 677-695. 
  3. ↑ 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
  4. ↑ Setchell, J. (2017). What has stigma got to do with physiotherapy? Physiotherapy Canada, 69(1), 1-4. 
  5. ↑ 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 
  6. ↑ 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 
  7. ↑ 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. 
  8. ↑ 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). 
  9. ↑ Kinsella EA, Caty M, Ng S, Jenkins K. Reflective practice for allied health: Theory and applications. 2012.    
  10. ↑ Setchell, J., & Dalziel, B. (2019). Using critical reflexivity to enhance clinical care: A clinician perspective. Journal of Humanities in Rehabilitation, May, 1-12. 
  11. ↑ 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). 
  12. ↑ 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.
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