Position Statement On Caregiver Language

 

Family Caregivers' Association of Nova Scotia (FCgANS) is a province-wide, non-profit organization dedicated to providing information and practical supports to more than 85,000 caregivers across the province. We promote the valued contributions caregivers make to the health care system and to our society.

 

Family Caregivers' Association of Nova Scotia is concerned that the present use and subsequent misinterpretation of the terms 'caregiver', 'informal caregiver' and 'unpaid caregiver' are reducing the significance and visibility of family caregivers in today's health care system and in society. Family caregivers are the cornerstone of home care. It is estimated that family caregivers save the health care system over $5 billion a year and that the work they provide is equivalent to more than 276,000 full-time employees.¹

 

Family Caregivers' Association of Nova Scotia believes there is a need to establish appropriate caregiver language with terminology acceptable to family caregivers; and that such language be adopted by health professionals, media and the public and private sectors.

 

Family Caregivers' Association of Nova Scotia supports the following definitions of a "caregiver" and/or "family caregiver":

A family, friend or neighbour who provides support and care to family or friends who are physically or mentally challenged, chronically ill or frail and elderly either at home or in a care facility. Family caregivers provide care to all age groups, regardless of the care receiver's disease or disorder as well as palliative situations. Caregivers are spouses, adult children or in-laws, siblings, young children, and other extended family members or friends. Caregivers have a special relationship with their care receivers. (FCgANS working definition)

 

A family member or friend providing unpaid care and/or support for a person requiring care. These individuals are distinguished from volunteers through their personal bond or connection to the care recipient. (Family Caregivers' Network Society of Greater Victoria)

 

Family Caregivers' Association of Nova Scotia further recommends that professionals use their professional designation or the term, "care provider" rather than caregiver. There is a need for accurate, consistent caregiver language and messaging. At present, volunteers and care providers are often referred to as caregivers, causing confusion among all stakeholders.

Family Caregivers' Association of Nova Scotia does not support the term "informal caregiver" when referring to, or addressing caregivers and family caregivers. Caregivers, nationwide, have expressed concern that the term "informal" diminishes the importance of their roles as caregivers in today's society. Caregivers are assuming more responsibilities and providing more complicated care due to de-institutionalization, early discharge, day surgery, cutbacks in public health services and an aging population.

Family Caregivers' Association of Nova Scotia supports the ongoing education of caregiver language with professionals, media and the public and private sectors. If caregivers are to be given the recognition and support they urgently require, they, alone, must be identified as 'caregivers' or 'family caregivers' to ensure their voices are heard.

 

Family Caregivers' Association of Nova Scotia provides the following definitions for further clarification.²

*Health Care Provider:
A practitioner who is authorized by legislation to provide health care. For example doctor, nurse, occupational and physical therapists, social workers, home support worker, care aid, etc. Health professionals are to be referred to by their specific titles and/or positions, or as health care providers. (This language is evolving and could include care providers or service providers also)

*Volunteer:
An unpaid individual delivering service to a client. An organization ensures appropriate recruitment, training and supervision of these support people to help meet a variety of client needs.

 

1. Janet Fast, Jacquie Eales, Norah Keating (2001). The Economic Impact of Health, Income Security and Labour Policies on Informal Caregivers of Frail Seniors. Dept. of Human Ecology, University of Alberta

2.Adapted from the BCHPCA Hospice Palliative Continuum of Care: A Model for British Columbians, Community Care Review Definitions