Human dimensions of illness experience

Introduction

The term “illness experience” refers to the ways in which people define and adjust to perceived interruptions in their health.[1] 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. 

  • 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.[2] 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.[3]
  • 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.[4][5][6]
  • 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[6]

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

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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

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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.[7]

  • Reflexivity often requires time, space and facilitation.
  • 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

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    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

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

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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

  • 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

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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

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

Cards for Humanity - Download PDF

References

  1. https://onlinelibrary.wiley.com/doi/abs/10.1002/9781405165518.wbeosi015.pub2
  2. Turner J, Kelly B. Emotional dimensions of chronic disease. Western Journal of Medicine. 2000 Feb;172(2):124.
  3. Dimsdale JE. Psychological stress and cardiovascular disease. Journal of the American College of Cardiology. 2008 Apr 1;51(13):1237-46.
  4. https://www.sciencedirect.com/topics/medicine-and-dentistry/social-determinants-of-health
  5. https://www.rwjf.org/en/library/research/2010/11/executive-summary/the-social-construction-of-illness.html
  6. 6.0 6.1 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.
  7. 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.