Health Care Person-Centered Profile

Identity Mark

We know that many people may have to go to the hospital to receive care for symptoms related to COVID-19. A common concern is that we, or that person we care about or care for, may have to go or receive this care alone, without the support of people they know and trust, because of risk or restrictions. NCAPPS subject matter experts have created a tool – the Health Care Person-Centered Profile – to communicate a person’s wants and needs if they are hospitalized without the direct support of their caregivers, family, neighbors, or friends.

The tool has two pages. The first page can be used to capture brief and vital information about the person’s health status. The second page contains the Person-Centered Profile, a one-page brief description of the things that can assist medical staff in providing more tailored and person-centered care. You can use the accompanying instructions to fill out the template for yourself, someone you love, or someone you’re caring for. We have also created examples that show how the tool can be used by people with a range of different backgrounds and concerns

Health Care Person-Centered Profile

Instructions for Developing a Health Care Person-Centered Profile





Resources for Person-Centered Planning during the Pandemic

The resources found here may be useful for people in various scenarios related to the COVID-19 Pandemic. Please check back frequently because we will add resources as they are available. If there is a resource that you believe would be useful to highlight here, please send a message to ncapps@hsri.org.

Person-Centered Thinking Skills in a Time of Crisis

This short video from Michael Smull describes how to apply person-centered thinking skills during the COVID-19 crisis. It includes discussion of balancing what’s “important to” and “important for” a person and the use of tools such as Good Day, Bad Day, One-Page Profiles, and Learning Logs.

Three Buckets and the COVID-19 Pandemic

Jenny Turner from the Charting the LifeCourse Nexus at the University of Missouri Kansas City Institute for Human Development describes how to apply the concept of “3 Buckets” of supporting the needs of people and their families during the COVID-19 pandemic.

Life Domains and the COVID-19 Pandemic

Jenny Turner from the Charting the LifeCourse Nexus at the University of Missouri Kansas City Institute for Human Development describes how to apply the concept of “Life Domains” to supporting the needs of people and their families during the COVID-19 pandemic.




Social Distancing


Changes in routines and schedules that come with social distancing can be disruptive and unsettling. When the structure provided by a schedule is no longer available, learning new routines can be challenging and stressful. Being cut off from family and friends can be particularly stressful for older adults and others living in long-term care settings. Technologies that facilitate people staying connected may not be widely available; if they are available, access may be restricted, or the person may need significant help to use them successfully.


Coming Out of Quarantine Safety Plan

Pat Deegan, PhD

Mental health recovery pioneer, Pat Deegan, created a free worksheet to help develop a unique Coming Out of Quarantine Safety Plan. Visit this link to access a fillable worksheet in English or Spanish and a video tutorial on how to use it.


Life Trajectory Example – Supporting 85-Year Old Margaret while Social Distancing

Charting the LifeCourse Nexus at the University of Missouri Kansas City Institute for Human Development

The trajectory tool provides space to a person’s vision for what they want, what they don’t want, and the strategies that can help to achieve that vision. In this example, Margaret and her daughter Evelyn have used the tool to explore what Margaret wants and doesn’t want as she practices social distancing in her assisted living center during the pandemic. A fillable version of the Trajectory and other person-centered planning tools from Charting the LifeCourse can be downloaded at https://www.lifecoursetools.com/person-centered/.


Life Trajectory Video Example

Derek Smith and Brenda Smith

Derek Smith and Brenda Smith share how to develop a Trajectory about how a person wants their life to be as they cope with life during the coronavirus crisis. A fillable version of the Trajectory and other person-centered planning tools from Charting the LifeCourse can be downloaded at https://www.lifecoursetools.com/person-centered/.

Integrated Support Star Video Example

Derek Smith and Brenda Smith

Derek Smith and Brenda Smith share how to use the Integrated Support Star to map out resources and supports that are available to a person during the coronavirus crisis. A fillable version of the Integrated Support Star and other person-centered planning tools from Charting the LifeCourse can be downloaded at https://www.lifecoursetools.com/person-centered/.

Developing New Routine Video

Derek Smith and Brenda Smith

Derek Smith and Brenda Smith share how they developed a new routine to organize the day when a person’s life has changed because of the coronavirus crisis.


The Wellness Guide to Overcoming Isolation During COVID-19: Being Connected, Staying Connected, and Choosing Connection

Link

To support people who are struggling with isolation and loneliness during this difficult time, Advocates for Human Potential adapted their evidence-based Wellness Recovery Action Plan (WRAP) to produce a special publication that addresses these concerns. The Wellness Guide to Overcoming Isolation During COVID-19 provides practical guidance for overcoming feelings of isolation and loneliness by building connections with oneself and others. It is designed for self-exploration about being connected, staying connected, getting reconnected, and choosing connection even during difficult times.




Change in Caregivers


One particularly challenging disruption is a change in caregivers. If a person receiving support requires help with personal care, having an unfamiliar caregiver can be upsetting. Explaining one’s needs and preferences on how to best to provide support can be overwhelming, especially under these already stressful circumstances. In addition, not knowing why one’s usual caregiver is no longer available can add to a person’s anxiety. People who have limited ability to communicate may be confused or frightened by the presence of someone new.

One-Page Profile Example Video

Derek Smith and Brenda Smith

Derek Smith and Brenda Smith share how to create a one-page profile for someone to use in during the coronavirus crisis.




When a Person Receiving Support Becomes Ill


People who become ill from COVID-19 experience a wide range of symptoms that range from mild to life-threatening. One certainty is the importance of quarantine for people who are infected. Thoughtful planning for potential isolation is critical. People who live independently could require some level of daily assistance to manage their symptoms and monitor their need for hospitalization. Residents of care facilities could face relocation and lose contact with those who know them best. Individuals with cognitive disabilities may not understand why they are now isolated and become more fearful and distressed. Not knowing what to expect may exacerbate the situation. Careful planning ahead of time with the person may mitigate the anxiety and fear that a person would experience if they become ill.

My Coronavirus Emergency Plan

Nobody is Disposable Coalition

This easy-to-use form includes a place to document practical information essential in case of an emergency. Examples include who might look after any pets in case of an emergency, and who has spare keys..

Planning Steps for Patients and Families During the COVID-19 Crisis

Partners Healthcare and Massachusetts General Hospital

This resource includes information on ways to help stop the spread of the coronavirus, developing a medical care plan, preparing for a possible hospitalization, and links to more information and resources..

Sick Bed Visioning Tool

Famous Chrome and Verónica Bayetti Flores

The Sick-bed Visioning Tool is an online resource to support you in developing a proactive and personalized plan to manage the different ways COVID-19 might impact your life. This includes planning ahead around your preferences, needs, and priorities should you become ill with COVID-19. The Tool was first created for the New York City Community but has been used by people throughout the United States. The Sick-bed Visioning tool is an outgrowth of Transformative Mutual Aid Practices (T-MAPs), developed by Jacks McNamara and Sascha DrBrul. T-MAPs is a set of tools for navigating challenging times, figuring out what you care most about, and communicating this with the important people in your life.




When Caregivers Become Ill


When a caregiver becomes ill or is no longer able to provide support due to personal circumstances, people may experience additional stress or anxiety about their own situation. People living with family members may not understand why the family member is not participating in familiar routines, or why they are now living in another area of the home. Residents of care facilities may experience additional fear for their own health knowing that a caregiver is ill and may have infected others in the facility. Preparing people for this possibility can help minimize the negative impact of the disruption.

When Family Members are Hospitalized due to COVID-19

The Center for the Study of Traumatic Stress – Uniformed Services University

Hospitalization or a potential hospitalization of a caregiver or family member can cause significant distress. This resources offers strategies for managing uncertainty and elevated stress, staying connected during family separations, and communicating effectively with children.




Caregiver Support and Self-Care


Caregivers need time to take a break and re-group, but during this time, caregivers may be reluctant to take time for themselves. When caregivers live in the same home as people who receive support, adequate respite may be almost impossible to achieve because of stay-at-home orders. Planning for caregiver respite can help to mitigate these factors and reduce the likelihood of burnout.

10 Tips for Family Caregivers

Caregiver Action Network

This easy-to-read infographic includes common-sense suggestions for self-care.

Taking Care of Yourself During a Public Health Emergency

Northeast and Caribbean (HHS Region 2) Mental Health Technology Transfer Center Network (MHTTC)

Steps for taking care of yourself, ways to stay informed without stressing out, and coping strategies are included in this resource.

Mental Health Resources for Parents and Caregivers during COVID-19

Mountain Plains (HHS Region 8) Mental Health Technology Transfer Center Network (MHTTC)

Links to a variety of resources that could support caregivers are provided in this two-page handout. Examples include “Helping Children Cope with Emergencies” and “Six Ways to Help Your Child Manage Their Anxiety During COVID-19.”

Peer, Friend and Self Support In The COVID-19 Crisis: How To Provide Support For Ourselves And Others Through Times Of Fear And Isolation

Mental Health America

This website provides a link to the slides and recording of a webinar addressing the skills and techniques that can be used to support each other during this difficult time. The webinar was presented by Patrick Hendry, the Vice President of Peer Advocacy, Supports and Services at Mental Health America.




Communication with Healthcare Staff


Restrictions on visitors for people hospitalized with COVID-19 are hard on everyone, but people with disabilities are at risk of additional social and emotional trauma if loved ones are suddenly absent from their lives. People with physical, developmental, psychiatric, or other types of disabilities may have also had traumatic experiences in hospitals, and being hospitalized for COVID-19 could be triggering or retraumatizing for these people. Healthcare staff are very likely to be overworked and under exceptional stress. Providing key information about the person at the time of admission is critical. While the emphasis will be on the person’s current status and medical history, understanding the person’s needs and the most effective way to communicate with and comfort the person is also essential.

Proactive Care Planning for COVID-19

Respecting Choices

This guideline includes questions to ask when making plans in case of a medical or health crisis, including “why is this important to do now? who should be included in the discussion? and what matters most to you?”

Making a Medical Plan During COVID-19

Prepare for Your Care

In an easy-to-read format, this resource details components of a medical plan, including planning for a hospital visit, care of pets, taking care of money and bills, and developing a plan for your medical wishes.




Protecting Your Rights as a Person with a Disability during COVID-19

Safeguard Against Disability Discrimination During COVID-19

    Center for Dignity in Healthcare for People with Disabilities

Know Your Rights during the COVID-19 Pandemic Video Series

    National Disability Rights Network

Know Your Rights

    TASH

Know Your Rights Guide to Surviving COVID-19 Triage Protocols

    Nobody is Disposable Coalition