Bulletin Index/

Health Care Reform

1. What do Women Want?

2. Privatization and Women’s Health in Canada: Tracking the Effects of Health Care Reform

Serving Diversity

3. Marginalized Voices from Vancouver’s Downtown Eastside: Aboriginal Women Speak About Their Health Care Experiences

4. An Exploration of Women-Centred Care in the Context of Cervical Cancer Screening in Ethnocultural Groups

Unpaid Caregiving

5. Caregivers’ Support Needs: Insights from the Experiences of Women Providing Care in Rural Nova Scotia

6. Caregivers and Support Services: Becoming Empowered

Midwifery

7. Challenges of Integration: Perspectives on the Regulation of Midwifery in British Columbia

8. Midwifery Care: Women’s Experiences, Hopes and Reflections

Caregivers and Support Services: Becoming Empowered

Introduction
This study was undertaken to improve our understanding of how to provide support to women who give unpaid care to family members. Specifically, we were interested in learning about the support needs of caregivers, their expectations regarding support services, the adequacy of existing services, and which services, interventions or practitioners facilitate caregiver empowerment, if any. These goals required us to examine how existing services are organized, as well as how they are used by caregivers.

Theory
This study uses an empowerment framework. Empowerment is not something that one provides to another person, but rather something that one enables. The literature suggests that key steps in empowerment include personal development, political action, and participation with peers. Critical reflection of, for example, the sex-based division of labour that leads to caregiving as women’s work, constitutes a step towards feeling empowered. For the purposes of this study, then, we defined empowerment as "a social process through which people increase their power, mastery or control over their own lives and eventually contribute to social changes that improve their quality of life and that of their peers." Group participation is at the heart of empowerment interventions. Antithetical experiences are those that lead to feelings of helplessness, dependency, being trapped, and having no control or choice.

Methods
This study investigated the Caregiver Support Centre (CSC) at CLSC Rene-Cassin in Montreal. The CSC focuses on the caregiver, offering diverse services in a flexible manner that are integrated with other CLSC services and based on user consultation. Twenty-eight study participants were recruited from among women who were using the CSC services. For comparison, four additional caregivers who used other support services were also interviewed. The study was conducted using phenomenological and qualitative methods.

The caregivers were selected on the basis of their relationship to the care receiver (spouse or daughter), the diversity of services they used, and their family circumstances. Study participants were recruited with the assistance of CSC or CLSC staff. Caregivers were initially contacted by practitioners who explained the objectives of the study and obtained the women’s consent to participate. Research team members then contacted the women for interviews.

Study Participants
The study sample included 32 caregivers, 16 of whom were wives and 16 daughters. The mean age of the wives was 73.5 years and the mean age of the daughters was 55.6 years. Wives were providing care to their husbands while the daughters were providing care to their mothers. The mean number of years that the women had been caregivers was 8 years for the wives and 6.25 years for the daughters.

With respect to use of CLSC services, the Drop-in was visited as often by the wives as the daughters. Wives were more likely, however, to use the Foyer to socialize and to attend conferences than were the daughters.

Caregivers also used other home care services from both the private and public sectors. One wife and six daughters received respite through in-home help from the CLSC. Six wives and seven daughters used private in-home help for their family member. Five wives and 14 daughters had assistance with bathing provided by the CLSC. Seven wives and nine daughters received private home help with housework.

Caregivers’ Needs and Expectations
The first objective of this research was to understand the needs of caregivers and their expectations of service delivery. Caregivers reported that they needed: more respite time; moral support (often undervalued in favour of practical or material support); information about the care receiver’s illness, especially at the beginning of the caregiving process; help with housework, transportation, accompanying the care receiver, care receiver’s personal hygiene and activities of daily living; financial assistance in order to hire home care help to spend time with the care receiver, do domestic work, pay for medications, provide transportation and accompany the care receiver; and recognition and support for their legal rights (some caregivers have to fight to obtain services or oppose legal decisions that concern them or their family).

Caregivers’ expectations were found to vary according to the care receiver’s needs and the urgency to meet those needs. Caregivers’ expectations also evolved over time as they used services and came to depend on the services’ minimum threshold of response to their needs or questions. Caregivers were also concerned about their own social integration, their perceived social value, and their ability to maximize their own potential. They wanted to be able to anticipate the future and tried to prepare for it by gathering information through research on what to expect and what measures should be taken.

Empowering Caregivers
In order to improve support to caregivers, another objective of this study was to understand the way available services are organized and used. Having a range of different services to choose from and having the option of combining them allowed caretakers to meet a variety of their needs. But combining services is only an option when services are available from different sources, as is more likely the case in respite care, and proposed or available services are not always suitable for a particular caregiver. Coordination of services can become another activity in itself. Nevertheless, flexibility in organizing services leads to greater caregiver control over the planning of daily activities and makes it easier for caregivers to meet their individual needs.

A third objective of this study was to identify which services, interventions or practitioners contribute to caregiver empowerment. We found many things enhanced caregivers’ feelings of empowerment, including respite care, having someone to count on, feeling able to freely express ideas and concerns, and understanding the family member’s illness. Respite or free time, for example, contributed to empowerment for some caregivers because it provided a few hours a week for the caregiver to relax or do essential errands. Knowing that they could count on someone for support was also key to a sense of empowerment. Being able to express themselves freely, knowing that there was someone to confide in who would legitimate their feelings, also freed caregivers from the burden of the perceived judgement of social norms. It was also important to caregivers to understand the care receiver’s illness: this entailed access to information, whether for dissemination or for their own understanding. Improved understanding of the illness enabled the caregiver to respond more appropriately to the course of the illness and to experience an improved quality of life.

Caregivers are vulnerable to feeling that there are no acceptable limits to their caregiving. Actively deconstructing the social norms of caregiving and their relationship to gender roles contributes to the development of an alternative perspective, which can legitimate women’s efforts to meet some of their own needs as well as those of the care receiver. To feel appreciated by others and to appreciate themselves is an empowering experience for caregivers.

We found that caregivers appreciate being guided and directed. Assistance with finding their way through the health care system is an important act of support and reduces worry and workload. Obtaining suitable, flexible services enhances empowerment because such services enable caregivers to individualize care according to their needs.

Ties of solidarity, reciprocity and friendship through support groups, especially long-term groups, encouraged empowerment because caregivers could provide each other with information and practical knowledge. Mutual aid and feelings of solidarity were mentioned as factors that improve self-image and feelings of competency. Taking social action to change conditions for all caregivers and to gain greater control over resources also resulted in feelings of empowerment.

Factors that hinder empowerment included a lack of recognition of caregivers’ needs, whether this arose from a lack of understanding about caregiving or a conflict of opinions and values. The health care system, for example, does not recognize caregiving as an alternative to placement. Another factor that discouraged empowerment was the devaluing of caregivers’ skills in situations where caregivers needed to provide information about the care receiver and couldn’t make themselves understood. Confrontations with technocratic services also tended to lessen caregivers’ participation and power in choosing which services would be most useful. Difficulty in obtaining adequate services may also lead to feelings of helplessness. In particular, caregivers were discouraged by services that were only intermittent, often withdrawn, or had waiting lists.

Recommendations
On the basis of our study we recommend that:

1. There should be on-going training programs for practitioners and decision-makers on issues related to caregiving.
   
   
2. At the university level, students who will work with caregivers and care receivers as helping professionals in the future should receive appropriate training and education.
   
   
3. Practitioners should act as contact persons as well as organizers of services for caregivers.
   
   
4. Files should be kept on caregivers as distinct from care receivers. Caregivers should participate in the identification of their needs.
   
   
5. Service delivery should take gender into account, as well as age, socio-economic status, cultural expectations, and the relationship between the care receiver and caregiver.
   
   
6. A variety of support groups (combining information, therapy, leisure, self-help and mutual aid) should be available to meet variations among caregiver needs.
   
   
7. A minimum level of services should be available in all community and social service centres and integrated in such a way that caregivers would have access in their relative’s area, even if the caregiver lives elsewhere.
   
   
8. A comparative study of public and private home care service provision is needed.
   
   
9. If possible, the same public support personnel should remain involved with a case to maximize continuity.

For a full copy of the report contact:
Centre d’excellence pour la santé des femmes Centre d’excellence pour la santé des femmes – Consortium Université de Montréal
To obtain copies of CESAF publications, contact:
Canadian Women’s Health Network
Suite 203, 419 Graham Avenue, Winnipeg, MB Canada R3C 0M3
Tel: (204) 942-5500, Fax. (204) 989-2355,
Information Line (toll free): 1-888-818-9172, TTY (toll free): 1-866-694-6367
Web site: www.cwhn.ca   E-mail: cwhn@cwhn.ca

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