Human Dimensions of Illness Experience: Difference between revisions

(Expanded text Reflexivity)
(Updated categories)
 
(38 intermediate revisions by 4 users not shown)
Line 1: Line 1:
<div class="editorbox"> '''Original Editor '''-  [[User:Rewan Elsayed Elkanafany|Rewan Elsayed Elkanafany]] and [[User:Kim Jackson|Kim Jackson]] '''Top Contributors''' - {{Special:Contributors/{{FULLPAGENAME}}}}</div>
== Introduction ==
== Introduction ==
The term “illness experience” refers to the ways in which people define and adjust to perceived interruptions in their health.<ref name=":0">https://onlinelibrary.wiley.com/doi/abs/10.1002/9781405165518.wbeosi015.pub2</ref> As physiotherapists / physical therapists we are focused on providing good quality clinical care.  However to achieve this we must take into consideration the human element of illness, especially when the person’s in our care have chronic, progressive conditions.  Being able to reflect upon and understand how a person’s emotional, social, cultural and personal dimensions can affect and effect one’s experiences, responses and outcomes is vital to giving the best treatment based on the client’s needs and is the foundation of a good relationship. 
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>
* Emotional:  The emotional dimensions of chronic conditions are often overlooked when medical care is considered.  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.<ref>Turner J, Kelly B. Emotional dimensions of chronic disease. Western Journal of Medicine. 2000 Feb;172(2):124.</ref> 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.<ref>Dimsdale JE. Psychological stress and cardiovascular disease. Journal of the American College of Cardiology. 2008 Apr 1;51(13):1237-46.</ref>
* Social:  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.<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>
* Cultural:  Culture is a system of thoughts & behaviours shared by a group of people . Our cultural backgrounds have a great impact on our lives ,Cultures conceptualise health and illness in different ways. Culture influences how health is viewed, how symptoms are expressed and how help is sought<ref name=":1" />
There is often a discrepancy between the importance placed on human aspects by the clinician to what actually happens in the clinical setting.  Focusing on this aspect of care can improve outcomes for both the person with a disability and the clinician.  It is not just the understanding between the clinician and the client that is important, understanding and communication within the multi-disciplinary team also has an impact on care.


== Improving the Client/Clinician Experience ==
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.
There are often topics that are difficult to address, especially between cultures, genders and social class but they are a necessary part of treatment.  By finding ways to explore these topics and give the client and their families more control over what is discussed and how can improve trust and care creating a more open and honest environment.  People come from all different walks of life and backgrounds and our own assumptions about right and wrong, good and bad can impact our views of those we are caring for.  It is important that we do not force our assumptions, values, actions and beliefs on others.


=== Reflexivity ===
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. 
This requires clinicians to analyse not only their beliefs and past experiences but also those of their clients to develop a strong understanding of a situation that may influence their actions and impact on client care and outcomes. It promotes learning and at times changing their practice through challenging practices, roles and beliefs and values.<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>
 
== Some Examples from the 'Cards for Humanity' ==
 
=== Learning to Attend to the "Human" Aspects : Up-skilling ===
[[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.
 
=== 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.
* Reflexivity often requires time, space and facilitation.
* Create time to think about the human aspects of care.
* Clinicians need to create time to think about the human aspects of care.
* Both team and individual reflexivity is needed.
* Both team and individual reflexivity are needed.
* Think about how clinical care can address the emotional, social and personal aspects of clients' lives.
* Think about how clinical care can address the emotional, social and personal aspects of clients' lives.


=== Facilitating Change ===
=== Creating Social Change ===
* The burden of change often falls on clients/families.
[[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.
* As a clinician, your voice has power.
 
* Important areas for change include:
Important areas for change include:
** reducing disability stigma
* Reducing disability stigma;
** improved accessibility
* Improved accessibility;
** better service availability
* Better service availability.
 
=== Difficult Topics ===
[[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'.'''


=== Choosing the Right Language ===
Sometimes clinicians need to let go of their assumptions to provide good care!
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.
=== 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!'''


== Improving the MDT Experience ==
<br>
Although each member of the MDT has the Client’s interest at the core of their care each cllinician’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.
== Resources ==
The Cards for Humanity are available for download and printing here:


== Improving the Clinic Experience ==
'''NB: The cards are © 2019 Holland Bloorview Kids Rehabilitation Hospital. All rights reserved.'''
* Flexibility
* '''For printing on an office printer:''' [[:File:MD cards office printing.pdf|Cards for Humanity Office Printing - Download PDF]]
* Facilitate input from the clients and families.
* '''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]]
* Balance 'best practice' care with individual family priorities.
The poster 'How Can Physios Enhance Lives' is available for download and printing here in various sizes:
* Be open to changing clinic routines.
* Foster creative solutions


== Learning New Skills – Upskilling ==
'''NB: Use professional printer and have it laminated, but also prints ok on office computers'''
Enhance the human aspects of client and family lives by improving understanding of:
====English====
* diversity and inclusion
* '''A1:''' [[:File:How Can Physios Enhance Lives A1 01.pdf|How Can Physios Enhance Lives - Download PDF]]
* spirituality, meaning making, religion
* '''A2:''' [[:File:How Can Physios Enhance Lives A2 01.pdf|How Can Physios Enhance Lives - Download PDF]]
* addressing and supporting 'negative' emotions
* '''A3:''' [[:File:How Can Physios Enhance Lives A3 01.pdf|How Can Physios Enhance Lives - Download PDF]]
* self-care for clinicians
====Portuguese====
* coping with client death and decline
* '''A1:''' [[:File:Enhancing-care-poster-Portuguese A1.pdf|How Can Physios Enhance Lives (Portugese) - Download PDF]]
* sexuality and disability
* '''A2:''' [[:File:Enhancing-care-poster-Portuguese A2.pdf|How Can Physios Enhance Lives (Portugese) - Download PDF]]
== Conclusion ==
* '''A3:''' [[:File:Enhancing-care-poster-Portuguese A3.pdf|How Can Physios Enhance Lives (Portugese) - Download PDF]]
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.


====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 ==
<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, Rewan Elsayed Elkanafany, Admin, 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.
Retrieved from "https://www.physio-pedia.com/index.php?title=Human_Dimensions_of_Illness_Experience&oldid=273501"