Setting and sample

caregivers’ homes. Entry into homes started with contacting two local government

agencies that contract home health care services: the Waterloo Wellington Community Care Access Centre [CCAC], and the South West CCAC. Following ethics approval from the Research Ethics Boards of Western University and one agency (see Appendix A), I arranged appointments with the Client Services Managers of each CCAC to explain the purpose and process of the study. I was provided with contact information of hospice palliative home care case managers, as they assess palliative home care clients for eligibility and needs (CCAC, 2011) and could identify potential participants. Case managers gave client-family caregiver participants a notice of recruitment (see Appendix

B) describing the purpose of the study, and the number of visits and personal interviews involved. Clients and family caregivers were informed that the study was voluntary and that they could withdraw from the study at any time. Potential participants were also informed in the notice that all information would be kept confidential and that all reports would be coded with pseudonyms and would therefore be anonymous. To maintain confidentiality with respect to the decision to participate in the study and comply with the Privacy Health Information Protection Act (2004), the case manager asked potential participants for permission for the researcher to call them. I called potential participants to further explain the study and expectations and to arrange a meeting time for the

interviews in their homes where they gave and received care. Prior to the first interview, I reviewed with the client and family caregiver the letters of information (see Appendices C-1 and C-2), and obtained written consents (see Appendix D). All clients and caregivers consented to continue with face-to-face interviews.

Primary nurses assigned to care for the client and family caregiver were contacted by the case manager to ask if they would participate in the study and if the researcher may contact them. I called potential nurse participants involved in the care of the consenting client/caregiver and arranged to meet them at a time and place that was convenient to them. I explained the study with the letter of information (see Appendix C-3) and

obtained consent (See Appendix D) prior to the face-to-face interview. Following the first interviews, I made arrangements to observe agency home visits in which the primary nurse provided care to the client and family caregiver in their home.

In order to address recruitment issues for individuals experiencing a vulnerable time such as end-of-life, I spent time with case managers (Atkinson & Hammersley,

2007; Mulhall, 2003) so they could become more familiar with the study and with me personally. This enabled case managers to better describe the study and my general attitude and mannerisms to potential participants. However, family members experience the strains of caregiving and emotional distress when their relatives are dying (Funk et al., 2010; Ward-Griffin, McWilliam, & Oudshoorn, 2012a, 2012b). Family caregivers and nurses also often feel the need to protect dying clients. Both of these experiences made recruitment and retention of clients and caregivers in hospice palliative home care challenging (Jo, Brazil, Lohfeld, & Willison, 2007; Morse & Fife, 1998).

To facilitate recruitment of clients with cancer in hospice palliative home care, I emphasized my role as a student and showed genuine curiosity by asking questions and listening attentively. An attempt was made to be non-threatening to assure nurses that my role was not to evaluate their knowledge and skills, but rather to understand how gender may influence everyday hospice palliative home care. I also shared my personal

experiences as a nurse and a family member of a relative dying at home receiving home care (Atkinson & Hammersley, 2007; Harrington, 2003; Lofland, Snow, Anderson, & Lofland, 2006). At the same time, to demonstrate competence and mutual interests, I made it known that I have some knowledge and experience of palliative care. These recruiting strategies were in keeping with critical feminist approaches that strive for the building of relationships and flattening of hierarchies, particularly in light of the inherent power of the researcher in the researcher-participant relationship (Olesen, 2005).

Additionally, I attempted to invite clients and family caregivers to participate in the study close to the time of their admission to hospice palliative home care. As advised by case managers, the Palliative Performance Scale (PSS), a validated tool used to

measure progressive decline of dying patients, was used to guide recruitment. The case managers and I agreed that the tool could provide a guide to determine the patient’s proximity to end-of-life. By assessing ambulation, disease progress, activity, intake, level of consciousness, and ability to care for self, the nurse provided a score indicating

proximity to death. We determined that a score of 60 to 70% on the PPS would be an ideal time to recruit clients, as the patient would be conscious, able to care for her or himself, and make decisions. This would allow time to complete interviews and home visits while the client was still able.

Purposeful sampling was employed to gather information-rich data and allow for an in-depth understanding of gender relations in hospice palliative home care (Patton, 2003). According to Smith (1987, 2005), starting with the men and women in the

everyday world is starting with the knowledge experts of their experiences. This point of entry into the inquiry then makes visible the invisible practices and regulations that permeate down to, and shape, the everyday experiences of those who are not part of the “ruling apparatus” (Smith, 1987, 2003).

As the goals of treatment for hospice palliative care are focused on care, rather than cure (Canadian Hospice Palliative Care Association [CHPCA], 2006; Ross, McLean, & Fisher, 2002), the primary criterion for inclusion in this study was being a senior client (over the age of 60 years) diagnosed with terminal cancer who was receiving hospice palliative home care to enhance quality of life. As well, the client had to be alert and orientated to person, time, and place at the initiation of the study. The family caregiver was a family member or friend who identified him or herself as a caregiver. Nurses were registered nurses, since they provide the complex care frequently required in hospice

palliative home care (S. Smith, personal communication, August 31, 2011). All

participants were over the age of 18 and able to speak English. However, consistent with ethnographic research, the unit of analysis was the culture of hospice palliative home care, rather than a focus on individuals (Atkinson & Hammersley, 2007; Thomas, 1993). As gender is relational, involving enactment of gendered expressions and responses between and among men and women and social institutions (Botoroff, Oliffe, Robinson, & Carey, 2011; Charlebois, 2011; Connell, 2012; West & Zimmerman, 1987, 2009), the sampling unit was comprised of the triad which included a client, her or his family caregiver, and the primary nurse involved with that particular client and caregiver. Data consisting of individual and conjoint interviews, observations of home visits, and documents were thus gathered from the “natural setting” during 16 months in the field (Allen, Chapman, Francis, & O’Connor, 2008).

In the midst of the study, the criterion for entry into the hospice palliative home care program had changed from a prognosis of one year to one of six months to live. This change in entry to the program made it difficult to recruit patients with higher PPS scores, and necessitated a longer time in the field than originally planned. Consequently, I was in the field from April 2012 to August 2013, achieving the successful recruitment of six client-family caregiver-nurse triads (See Appendix E).

A sample size of six clients, six family caregivers and four nurses (two clients had the same nurse) elicited 25 formal interviews, focused on predetermined semi-structured interview questions, in addition to nine informal interviews, comprised of questions and interactions that arose during field observations, written in the form of field notes for analysis (Roper & Shapira, 2000). As completion of thirty to fifty interviews is deemed to

be adequate for ethnographic research (Morse, 1994, 2000; Sandelowski, 1995), this study was considered to be satisfactory with a total of 34 interviews in addition to observations of home visits and review of documents. These methods generated copious data with a total of 39 hours of observation and 852 pages consisting of typed transcripts and fieldnotes. Furthermore, rather than aiming for a large number of participants, the focus of the study was on the unit of analysis of the triad consisting of the client, family caregiver, and nurse, which permitted examination of the dynamic and interactional quality of gender relations. More significantly, data were sufficient to fully develop concepts and themes and relationships among concepts and themes (Brod, Tesler, & Christensen, 2009) in order to understand and challenge gendered attitudes, beliefs, and practices that inform the culture of everyday hospice palliative home care. In addition to interviewing and observing the triad within the setting of hospice palliative home care, documents were also included (Thomas, 1993) and are discussed under data collection.

2.5.2 Data collection methods. One of the primary features of ethnography is