| Reflection |
Critically evaluate your:
Knowledge
What sources of knowledge have informed your understanding of persons with disability and are they a limited or full representation? Could there be other resources that could give you a different perspective? Think of the broader social context of caring (attitudes, policies, laws, social representations), and not only caring at the individual level. How does that change what could be done to help improve care?
Attitudes and Beliefs:
How has history played a role in shaping how health care fields and the broader society see persons with disability? How have those historical attitudes and beliefs shaped the experiences and possible meanings of living with an IPHC? Are the experiences and meanings the same for all persons, with all IPHCs, in all countries/cultures? What more should you and others understand about the meaning of living with various IPHCs?
Expectations:
How has and is disability and care of persons with IPHCs represented in the broader society in popular literature, medical literature, art, movies, laws, and policies? How do these social and cultural representations influence the expectations that others have of persons with IPHCs? (think about autonomy, personhood, respect, and opportunities) How does the period of time that you tend to interact with persons with IPHCs affect what you expect their life to be like (i.e., do you only see them in the critical period but have no idea what happens to them later?) Sexuality is an intrinsic part of people’s identity throughout the life cycle, despite IPHCs. Intimacy and childrearing can be strong desires for many people and barriers to parenting can often be overcome.
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| Learn |
Listen, ask and never assume. They are a person first and not their health condition. Learn about them beyond their health condition. Expose yourself to literature on disability topics outside of health care fields, especially on life outside of the health care system (memoirs, disability studies, social science case studies, phenomenology or qualitative studies). Attend patient/family panels to get insight/feedback from another perspective. Look for coursework in programs or at conferences that are outside of health care fields (disability studies or social sciences).
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| Practice and Apply |
Respect their privacy, personal space, and personal dignity. Ask permission before doing anything and explain what you are doing. Monitor their physical and emotional responses and adjust your approach if necessary. Talk directly to the person and not just their caregiver or family. Acknowledge persons with intellectual disability as you would any other person and do not talk over them as if they are not there. Do not expect or assume their caregiver/family will be responsible for their needs when they are in your care. Ask how they would like to be involved and check in on them. Ask for input on their care as appropriate. Make sure they have assistive aids when and where they need them, do not send them home. Communicate their needs when they go to other places or for procedures. Ask the person (or their caregiver) to tell you about their personal life and the things that are important to the individual and the family. Incorporate these things into their care plan. Make sure the information (verbal or written supplementary) and the interventions you develop for patients/family members are relevant to their needs and not generic. Look for cues to how the setting or staff behaviors have affected the person or family member and honestly acknowledge when you have made an assumption or mistake. Challenge your peers on beliefs or behaviors that could create cultural or physical barriers to patients/families.
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| Ask for Feedback |
As you apply new cultural skills, continuously reflect how each patient and family is different, even if they have similarities. Invite patient/family anonymous and open feedback on the care setting, procedures, and the nature of interactions with staff in order to expose perceived power differentials and physical and attitudinal barriers. Allow outsiders (family members, students, community members, or others) to do audits of your setting, ongoing HCP education, and care process in order to expose power differentials and potential physical or attitudinal barriers. Involve persons/family members in the construction of knowledge, in particular research, unit/hospital policies, educational materials, and/or programs of care and support. If you only see patients in the acute phase of their care, invite them at a later point in time to tell you how they are doing. This can be a powerful sharing opportunity for both sides!
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