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Technical Assistance Report Abstract

Participatory Research at Cooperative Care: Supporting Caregivers and Building a Unified Cooperative, July 2006, by Andrea Robles and Julie Whitaker

Executive Summary

This report is based on a participatory research project conducted between June 2003 and December 2004, and the subsequent actions inspired by it through June 2006. Members of Cooperative Care, a worker-owned home care agency, and two academic researchers conducted the research.

The research objectives were to learn: 1) how the cooperative could better support their members physically and emotionally; and 2) how to improve cooperation and communication among members. With the information obtained with this project, caregivers aimed to build a stronger and more unified cooperative.

Caregiver Background

  • At Cooperative Care, there are two primary distinctions among members: 1) between personal care and supportive home care workers; and 2) between caregivers who care for unrelated clients or family members. Many had worked as caregivers prior to joining the cooperative, either in formalized settings or in the homes of family members.

  • Within our sample, most client visits were of a fixed length and schedule; however, for a few clients, the schedule varied from week to week. The schedules for caregivers who took care of family members were quite different from for those who cared for unrelated clients. Caregiver who cared for family members were frequently responsible for care 24 hours a day, 7 days a week.

  • Caregivers reported that slightly over half (52%) of their clients were located in rural areas; the remainder (48%) were within town limits. The number of miles caregivers traveled to and from clients' homes per week varied from one half mile to more than 300.

Equipment, Emergency Plans and Client Well-Being

Equipment. Clients used a broad array of physical devices and equipment to assist them (39 types were reported). For the majority of clients (68%), caregivers felt that they had adequate equipment. For almost a third of clients (32%), caregivers said that additional physical devices or equipment was needed, for either assisting the client or easing their own physical burden.

  • Suggestions for Equipment. Cooperative Care can assist clients and caregivers to obtain equipment by 1) compiling a list of possible sources of equipment; and 2) starting a "loan closet."

Emergency Plans. Most caregivers believed that their clients' emergency plans needed updating. Since more than half the clients lived in rural areas, some distance from the nearest hospital, caregivers said that a plan to assist their clients at their homes during an emergency was of particular importance.

  • Suggestions for Emergency Plans. To better address emergency situations: 1) update clients' emergency plans for fires, storms, and medical emergencies, 2) include emergency contacts as well as other medical information; 3) depending on clients' needs, make emergency equipment available and accessible; and 4) ensure that emergency plans are easily visible in the clients' homes.

Client Well-Being. Due to their frequent visits, caregivers are regularly able to assess the emotional and physical state of the clients. Caregivers noted a broad range of physical, mental, and/or emotional change in clients, and had suggestions for how to improve the well-being of some clients.

  • Suggestions for Improving Client Well-Being. Caregivers reported that some clients are isolated and could benefit from socializing; thus, the cooperative should consider: 1) providing more opportunities for clients to socialize and have companionship; and 2) assisting clients to form support groups.

Physical and Emotional Issues Faced by Caregivers

Physical Concerns

Physical Injuries. A minority of cooperative members had experienced physical injuries in their current clients' homes; however, caregivers reported that there was the potential for injuries in almost half of their clients' homes.

  • Suggestions for Preventing Physical Injuries. Caregivers suggested that the cooperative might: 1) obtain needed equipment for client (see Suggestions for Equipment above); 2) obtain physical devices that can be used by caregivers, such as a back brace; and 3) provide in-service training on how to use good body mechanics and equipment properly.

Pets. Pets were another potential cause for injury, as well as the cause of general anxiety for some caregivers. About half the clients had pets and about half of those clients had multiple pets.

  • Suggestions for Dealing with Pets. To address caregivers' concerns about pets, the cooperative could: 1) obtain information on clients' pets, by using new client questionnaire; and 2) draft a set of basic pet guidelines.

Emotional Concerns

Emotional Stress. Emotional stress affects caregivers who care for family members differently than those who care for unrelated clients. The major form of stress reported relates to clients' behavior. However, family members were twice as likely to report client behavior as a problem. Cooperative members had their own, individual methods for responding to stress either on or off the job.

  • Suggestions for Dealing with Emotional Stress. To reduce emotional stress caregivers suggested: 1) having better communication with the cooperative office; 2) forming a support group for or assigning a mentor or support person to cooperative members; and 3) offering prizes for stress relief, perhaps at the annual meetings.

Inappropriate Behavior. Slightly over one-third of caregivers described experiences with inappropriate behavior from a client at some point during their career. Inappropriate behaviors included unwanted sexual comments or advances, hair grabbing, scratching, or general "uncomfortable situations."

  • Suggestions for Dealing with Inappropriate Behavior. For caregivers to better respond to inappropriate behavior the cooperative could: 1) offer training on how to deal with this behavior; 2) ensure that staff at the cooperative office are available to discuss it; and 3) have an outside person, such as an office staff member, speak with the client instead of the caregiver to reduce the awkwardness for the caregiver.

Caregivers' Suggestions for Building Communication and Cooperation among Cooperative Members

Cooperative members discussed four ways in which cooperative members, clients, cooperative management and the board of directors could better communicate and cooperate with each other. The suggestions included:

  1. gathering more information about clients to give to caregivers;
  2. establishing communication methods for caregivers who care for the same client;
  3. creating more opportunities for cooperative members to talk with one another; and,
  4. fostering an environment wherein cooperative members can feel more comfortable communicating with cooperative management and board of directors.


The cooperative members and staff initiated several activities after the participatory research project was completed that greatly improved membership communication and involvement, and addressed other problems identified through the research. Many factors affect changes within organizations and individuals, thus it is difficult to discern to what degree the ongoing activities and initiatives were inspired directly by the research process and its findings. However, at the very least the participatory research project "opened doors" to other activities and processes.

The complete report (307k) is available in Adobe's Acrobat format. Acrobat Reader is required to view the file. Use Adobe's web site to download a free copy of Acrobat Reader.

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