Browsing by Author "O’Rourke, Hannah M."
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- ItemOpen AccessBuilding a new life: a qualitative study of how family carers deal with significant changes(2022-07-01) Duggleby, Wendy; O’Rourke, Hannah M.; Baxter, Pamela; Nekolaichuk, Cheryl; Thompson, Genevieve; Peacock, Shelley; Ghosh, Sunita; Holroyd-Leduc, Jayna; McAiney, Carrie; Dubé, Véronique; Swindle, Jennifer; Pagnucco-Renaud, Madeleine; Sana, SaminaAbstract Background Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers’ experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers. Methods Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data. Findings/results Carers dealt with the significant changes they experienced through the process of “building a new life” consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life. Conclusion The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.
- ItemOpen AccessIncreasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol(2023-12-20) Santos Salas, Anna; Watanabe, Sharon M.; Sinnarajah, Aynharan; Bassah, Nahyeni; Huang, Fleur; Turner, Jill; Alcalde Castro, Jacqueline; O’Rourke, Hannah M.; Camargo-Plazas, Pilar; Salami, Bukola; Santana, María; Campbell, Katy; Abdel-Rahman, Omar; Wildeman, Tracy; Vaughn, Lisa; Judge, Harkeert; Ahmed, Sadia; Adewale, Bisi; Iyiola, IqmatAbstract Background Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. Methods This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants’ experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. Discussion This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.