Anne Neufeld

Caregiving In Transnational Context “My Wings Have Been Cut; Where Can I Fly?”

Migration often requires the renegotiation of familial and gender roles as immigrants encounter potentially competing values and demands. Employing ethnographic methods and including in-depth interviewing and participant observation, the authors explore the experiences of 29 South Asian and Chinese Canadian female family caregivers. Caregiving was central to their role as women and members of their ethnocultural community. The women were often engaged in paid labor that compressed the time available to fulfill their duties as caregivers. Women’s role in the transmission of cultural values that serve to shore up the boundaries of their ethnic community did not allow for significant renegotiation of their caregiving responsibilities despite disrupted family networks and increased demands. These caregiving arrangements are more costly to women in Canada than in their countries of origin.

Immigrant Women: Making Connections to Community Resources for Support in Family Caregiving

The purpose of this ethnographic study was to understand how immigrant women caregivers accessed support from community resources and identify the barriers to this support. The study included 29 Chinese and South Asian women caring for an ill or disabled child or adult relative. All experienced barriers to accessing community services. Some possessed personal resources and strategies to overcome them; others remained isolated and unconnected. Family and friends facilitated connections, and a connection with one community service was often linked to several resources. Caregivers who failed to establish essential ties could not initiate access to resources, and community services lacked outreach mechanisms to identify them. These findings contribute new understanding of how immigrant women caregivers connect with community resources and confirm the impact of immigration on social networks and access to support.

Male Caregivers’ Use of Formal Support

The purpose of this study was to explore male caregivers’perceptions of formal support. The men were caregivers of adults with cognitive impairment. The study involved secondary analysis of interview data on perceptions of support that had not been previously analyzed from the perspective of formal support. Techniques of data analysis used in grounded theory were applied to 62 guided interactive interviews conducted with 24 male caregivers during a period of 18 months. The men experienced a process of making concessions for care in the following four sequential stages: resisting, giving in, opening the door, and making the match. Personal barriers deterred the caregivers from seeking help, and once the caregivers engaged formal help the influence of characteristics of the health care system and individual staff members had both enabling and disabling effects. For caregivers whose use of formal support involved admitting their relative to a long-term care facility, the phase of making the match was followed by redesigning their caregiver role.

Reciprocity and Social Support in Caregivers' Relationships: Variations and Consequences

Support from family and friends is important in caregiving and has been associated with positive health of the caregiver. Reciprocity is a dimension of support that may be restricted in the relationships of caregivers. The purpose of this study was to examine whether reciprocity exists in relationships with friends and family as well as with the care recipient. Two groups of women were included: 20 mothers of premature infants and 20 women caring for older persons with cognitive impairment. Perceptions of reciprocity were explored in in-depth interactive interviews with the caregivers over 18 months. This article describes the four variations in reciprocity and the process of monitoring that were identified from content analysis: reciprocity, generalized reciprocity, waived reciprocity, and constructed reciprocity. Constructed reciprocity was used only with the care recipient. Some caregivers provided care by obligation with no reciprocity. The article concludes with a discussion of implications for research and practice.

Interactive Use of Genograms and Ecomaps in Family Caregiving Research

This article argues for the concurrent and comparative use of genograms and ecomaps in family caregiving research. A genogram is a graphic portrayal of the composition and structure of ones family and an ecomap is a graphic portrayal of personal and family social relationships. Although development and utilization of genograms and ecomaps is rooted in clinical practice with families, as research tools they provide data that can enhance the researchers understanding of family member experiences. In qualitative research of the supportive and nonsupportive interactions experienced by male family caregivers, the interactive use of genograms and ecomaps (a) facilitated increased understanding of social networks as a context for caregiving, (b) promoted a relational process between researcher and participant, and (c) uncovered findings such as unrealized potential in the participants social network that may not be revealed with the use of the genogram or ecomap alone, or the noncomparative use of both.

The Significance of Social Engagement in Relocated Older Adults

Social networks and social support are recognized as important determinants of health. Relocation is a common transition in older adults’ lives that can disrupt existing social networks and challenge seniors to reconstitute these networks. Social engagement is a required component of the process of reconstituting social relationships and of feeling connected. The purpose of this focused ethnographic study was to develop an understanding of the experience of social engagement in relocated residents of a senior-designated apartment building. Data generation included interviews with 19 older adults. Transcribed interviews were analyzed using thematic analysis. Seniors developed four types of relationships for provision of feelings of security, casual interactions, opportunity to be supportive, and friendship. The findings of this research provide a better understanding of the relationships seniors developed in a new community as a result of the process of social engagement.

Participation of Immigrant Women Family Caregivers in Qualitative Research

The recruitment of articulate, expressive participants is an essential part of methodology in qualitative research. This article presents the authors’ experience in the recruitment of immigrant women of Chinese and South Asian origin in an ethnographic study. The study included women caring for an adult or child family member who had a chronic health problem. Knowledge of women family caregivers’ health is restricted by the failure to include diverse groups of women in research. In this article, the authors discuss issues related to recruitment and participation of immigrant women in research, including establishing access to diverse groups of women, benefits for immigrant women, and placing the researcher and research process on the same level. Practical research strategies to address these issues and engage the women in research that portrays their perspectives are presented. The authors’ discussion concludes with reflection on their experience and that of other researchers.

Women's experiences of barriers to support while caregiving

This qualitative study explored womens perceptions of barriers to support during family caregiving in a Canadian setting. Twenty mothers of premature infants and twenty women caring for an older person who is cognitively impaired were interviewed in-depth over 18 months. Both groups of women preferred that support be offered to them and identified numerous barriers to requesting support. Perceived barriers included an obligation to provide care, loss of independence and self-esteem, concern for burden on others, the desire to excuse others from providing support, the inability to reciprocate support, fear of refusal or exposure, nonsupportive actions, the time and effort needed to coach others to provide effective support, and the lack of available, competent help. Some of these barriers reflect personal costs to the woman caregiver. Other barriers reflect societal norms that family caregiving is the responsibility of women.

Practical Issues in Using a Card Sort in a Study of Nonsupport and Family Caregiving

The authors successfully used the card sort data collection technique with 17 female family caregivers in a large ethnographic study of nonsupport. In this article, they describe the practical issues they addressed. Initially, they developed strategies to construct meaningful statements that reflected key themes and were manageable in an interview. Later, to address challenges for participants, they developed approaches to assist women in moving beyond their own experience, dealing with test anxiety, and anticipating an emotional response. To facilitate effective data collection, they made detailed arrangements in advance, collected “talk aloud” data that captured women’s decisions, and maintained accurate records. The women felt validated in their caregiving roles, as the card statements reflected their experience and rich data was elicited. The card sort exercise contributed information about variability in the meaning of similar interactions for different women and a beginning understanding of the criteria women used to make decisions.

Advocacy of Women Family Caregivers: Response to Nonsupportive Interactions With Professionals

Support from health and social service professionals assists women in caring for a relative with a chronic condition. However, nonsupportive interactions coexist with supportive interactions and might have unanticipated consequences. The purpose of this ethnographic study was to examine advocacy as a proactive response to nonsupportive interactions with professionals among women family caregivers in four caregiving situations. Data generation included in-depth interviews with 34 women. Interviews were tape-recorded, transcribed verbatim, and analyzed using thematic and constant comparative analysis techniques. As a consequence of nonsupportive interactions women experienced negative feelings, a lack of trust, powerlessness, and challenges in their caregiving situations that were catalysts for advocacy involving assertively taking charge in a relationship with a health professional. As advocates women employed strategies of monitoring their relatives condition, educating themselves or others, negotiating or fighting for resources, or campaigning for change. There were stress and fatigue involved in becoming an advocate, but the women also described the experience as one of personal growth. This research provided insight into the role of nonsupportive interactions with professionals as a catalyst for the development of individual-level advocacy initiatives.