Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Abstract

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews (n = 25), observations of agency home care visits (n = 9) and analyses of policy and home care agency documents (n = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences.

Disrupting gender norms in health systems: making the case for change

“…7,[118][119][120][121][122] Social harassment, alienation, and even violence can arise from women failing to adhere to the expected gender norm as a caregiver. 123,124 Nurses and midwives constitute about half of the health-care workforce globally. 125 However, there is a shortage of nursing staff, 125 with fewer women entering nursing in part due to its low status and pay and disrespectful treatment, despite the requisite training and credentials.…”

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

“…In cases of cancer in the palliative phase, it is most often the patient's spouse or daughters who have the responsibility for caregiving at home, but sons, other family members and friends also contribute (Funk et al, 2010;T. Morgan, Williams, Trussardi, & Gott, 2016;Sutherland, Ward-Griffin, McWilliam, & Stajduhar, 2017). When the patient is elderly, the availability of family members can be a challenge (Higginson, Sarmento, Calanzani, Benalia, & Gomes, 2013;.…”

What’s in a Word? Naming Obligations

“…For instance, had we asked about helping cousins, aunts and uncles, or even grandparents, the results would have surprised us less. The fact that our sample, consisting largely of the types of individuals known to support family obligation norms—women (Sutherland, Ward-Griffin, McWilliam, & Stajduhar, 2016), young people (Shahly et al, 2013), and individuals who identify as highly religious (Myers, 2004)—responded more favorably to helping children as an option rather than as an imperative, suggests that negative reactions to these words may be widespread.…”

“…We remain intrigued by the differences found in this study compared with previous “family obligation” scholarship, because the characteristics of the sample likely represented individuals who might be more favorable to notions about family obligations than a general sample would. For instance, younger individuals have reported greater inclination to feel obligated (or responsible, or dutiful) to kin (Ganong & Coleman, 1999; Shahly et al, 2013), as have women (Sutherland et al, 2016), and individuals who consider themselves to be religious (Yoon, Shin, Nian, & Curlin, 2015). As such, one might expect our sample to have been more favorable to words like obligation, responsibility, or duty to kin and less favorable to sentiments of choice when making decisions about aid for children.…”