Elder Care Communications

As Patricia Ness, MA, RN, expresses the concern, individuals involved in parent care have a unified cry – “why hasn’t anyone prepared us for this?”.  Why is there no one to help us through the process? 

There are two major focuses of Positive Lights communications.  One is to lead readers to sources of information, education and support.  The other is to open the line of communication between all those involved with long term care residents – Professional Caregivers, Family Members, Volunteers, and Administrators.

Positive Lights believes that knowing and understanding the roles, limitations, and expectations of each other will lead to better care of our loved ones.

Positive Lights conducted a series of Focus Groups in the Kansas City metro area during October 9-15, 2001.  These meetings were not intended as a scientific analysis – they were characterized as a grass roots organization (Positive Lights), asking people who are in the trenches what it could do to help.

We believe the results of this study strongly indicate a need for more effective communications between the four main groups that affect the care of the elderly. Improved communications can be facilitated by

• having periodic (monthly or quarterly) meetings with family members,

• publishing a newsletter about the activities of the facility,

• providing honest information to each affected group and

• having adequate training for each affected group.

As part of that training, each group involved in the care of the residents should be educated regarding the concerns and expectations of the other three groups.

We welcome suggestions for other methods of improving communications between the administrators, the caregivers, the volunteers and the family members of the patients or residents of an elder care facility.

The following is a summary of the focus group discussions and the opinions expressed by the (1) administrators, (2) caregivers, (3) volunteers and (4) family members.

Positive Lights views residents of long term care as being surrounded by four separate but interrelated circles of care:  Administrators of the facility; professional caregivers who work in the facility; family members of the resident; and volunteers who donate their time and energy to the residents/facility. 

We asked each of the groups the same questions:

• What words would you use to describe your relationship with long term care (word storming);

• What barriers do you perceive that get in the way of you doing the best you can;

• What would you define as the best of all possible worlds in long term care (utopia)

This takes each of the major issues posed by the facilitator, and summarizes the responses of each of the four focus groups. 

Word storming:

        Administrators:  Personal satisfaction (compassion, satisfaction, contribution), but the system stymied their ability to give the best care (lack of control, dependency). As a result, there were personal “downer” words (frustration times 2, under appreciated, drained, unmet expectations). 

        Volunteers: Did not see good relationships with Caregivers (mistrust, suspicion, volunteers were “watchers”).  Volunteers were not comfortable in nursing homes when there was no orientation or direction from nursing home administration.   

        Family members:  recognized positive role of caregiver (caregivers were friendly, interested, caring, warm), but also saw instances of abuse.  Recognized the influence owners had in the way nursing homes are run, particularly absentee owners. 

        Caregivers:  saw their role and relationship with patients in very positive terms (attentive, warm, cordial), but recognized reality that relations with patients were sometimes frustrating and hurtful.  There seemed to be a great demarcation in attitude between long term and short-term caregivers – from the long-term

 Caregiver point of view.

Barriers:

Administrators:

·     Exogenous factors:

• Low reimbursement rates

• Lack of control of external (regulatory) requirements

• Process based regulations instead of outcome based

• Marketing program messages vs. realistic outcomes

·     Communication: 

• Lack of education of family members, legislators regarding long term care

• Lack of skills training for staff (personal and work)

• Complete misunderstanding of expectations by family

• Lack of appreciation / respect for knowledge, job

        Volunteers: 

·     Misunderstanding by staff of role of volunteers

·     Family and staff do not understand expectations

·     No connection or orientation between volunteers and facilities

Family Members:

·     Lack of bonding to facility (distance, desire)

·     Administrators are disinterested toward staff, family

·     Family’s attitude toward caregiver affects caregiver’s communication with family

·     Family not comfortable or fearful of nursing home

·     Family not sure how to act

Caregivers:

·     Family, residents show racial prejudice

·     Family members feel guilty for leaving parent in home

·     High work demands / too busy

·     Family members too demanding – not realistic expectations

Utopia:

        Administrators:

·     Smile on face of resident, families, staff, state agencies

·     Home-like environment, activities

·     Family member who says “I’m glad my parent was here”

·     Positive media coverage

·     “Corporate America needs to take leadership role in making changes to the long term care environment”

·     Education (expectations, realities)

·     Day to day positive culture – not just effective programs

Volunteers:

·     Open line of communication – education

·     Volunteers able to talk to other patients

·     Educate volunteers of reality of nursing home environment

·     Personal connection with patients

·     Having an environment where everyone knows role of volunteer.

·     Volunteers have orientation to patient’s homes, tour other nursing homes.

 Family Members:

·     CNAs who are caring people

·     Friendly support staff

·     Nurses who communicate with family

·     Close relationship between family, staff, administrators

·     Administrators who support quality caregivers (compensation/benefits)

·     Environment comfortable for patients/family friendly

Caregivers:

·     Too much help/staffed to do quality job

·     It is the QUALITY of staff, not QUANTITY that’s important

·     Good working environment (recognize personal needs of staff – smoking area, nap lounge)

·     More personal time with patients

·     Train CNAs with real world expectations, not book world.

The Organizing Committee of Positive Lights would like to thank all those who participated in these focus groups.