Talking About Death: Exploration of the Impact of Death Communication Norms on End-of-Life Caregivers

This study seeks to understand the experience of end-of-life caregivers and how their subscribed communication norms regarding death impacted their caregiving experience and preparedness to make decisions on their person’s behalf. Eight participants were recruited from a Midwestern support group facility with a population of nearly 8,000 members that include cancer and grief support members. Criteria required adult participants that were less than 10 years out from their caregiving experience. Phenomenological research methods were used capturing eight opened ended interviews about participants death communication history, caregiving experience, and reflection on current death communication norms. Thematic analysis was utilized to assess common themes amongst the participants. Themes included patterns of communication norms, previous caregiving experience and longer term caregiving as protective factors, and collaborative communication about caregiving was a protective factor for reassurance in decision making. The themes support further research and implications for future practice for earlier interventions to establish end-of-life care directives, education about end-of-life and care needs, and postventions for caregivers

Gender Relations in Hospice Palliative Home Care for Clients with Cancer and Their Family Caregivers: A Critical Analysis

The purpose of this study was to critically examine gender relations in the sociopolitical context of hospice palliative home care for clients with cancer and their family caregivers. Using a critical feminist lens, I employed critical ethnography as a methodology to uncover taken-for-granted attitudes, beliefs, and practices that shape health and health care experiences within the culture of end-of-life at home. The study addressed the following research questions: (a) How do gender relations shape health and health care experiences within the socio-political context of hospice palliative home care for clients with cancer and their caregivers?; (b) How do gendered processes operate to produce gender relations and potential gender inequities in this context?; and (c) What are the social mechanisms and consequences that (re)produce gender (in)equities in hospice palliative home care? Purposeful sampling was used to gather information-rich data from six triads consisting of a client with cancer, his/her family caregiver and primary nurse. I employed ethnographic methods of interview, observation, and document review to gain in-depth knowledge of the patterns and dynamics of gender relations. Twenty-five semi-structured interviews were conducted with clients, family caregivers, and nurses. Observations of nine home visits by the nurse contextualized gender social relations in this setting. Program, professional, and public communication documents were analyzed to understand how institutional discourses shaped gendered attitudes, beliefs, and practices and everyday health and health care experiences in hospice palliative home care. A gender-based analysis revealed that institutional discourses influenced Gendered Expectations and Exemptions, disadvantaging both men and women in this context. Ideological gendered processes of Normalizing Gender Relations and Equalizing Gender Relations supported the everyday practices of Regulating Gender Relations. Finally, socially constructed mechanisms of Preservation/Destruction of Gender Stereotypes and Imbalance/Balance of Power (re)produced gender (in)equities. Overall, gender relations and gender inequities were considered low in priority and status within the culture of hospice palliative home care. Recommendations have been made related to policy, practice, education, and research

Exploring the Iranian-Canadian Family Experience of Dementia Caregiving: A Phenomenological Study

Presently in Canada, there are approximately 500,000 individuals living with dementia, which is expected to increase to over one million by 2038. With Canada’s minority elderly population growing, the number of Iranian-Canadian older adults living with dementia is expected to rise as well. Family caregivers are a significant source of help among Iranian-Canadians and the provision of informal care by adult children for parents with dementia in the Iranian culture is an expression of love and dedication. This study explored the meaning of the experience of Iranian adult children in Canada caring for a parent with Alzheimer’s disease, the values and attitudes they held in regards to their utilization and expectation from formal and informal care services, and the role of culture in shaping these experiences. A phenomenological study was used to investigate this phenomenon. In-depth, semi-structured interviews were held with four adult child caregivers and rich data were obtained. The research findings focused on the dual reality of dementia caregiving, the importance of fulfilling filial obligations, and the expression of preferences in formal dementia care. Key words: dementia, minority, Iranian-Canadian, family caregiver, informal care, culture, phenomenolog

Self-care Barriers Reported by Emergency Department Patients With Acute Heart Failure: A Sociotechnical Systems-based Approach

Study objective We pilot tested a sociotechnical systems-based instrument that assesses the prevalence and nature of self-care barriers among patients presenting to the emergency department (ED) with acute heart failure. Methods A semistructured instrument for measuring self-reported self-care barriers was developed and administered by ED clinicians and nonclinician researchers to 31 ED patients receiving a diagnosis of acute heart failure. Responses were analyzed with descriptive statistics and qualitative content analysis. Feasibility was assessed by examining participant cooperation rates, instrument completion times, item nonresponse, and data yield. Results Of 47 distinct self-care barriers assessed, a median of 15 per patient were indicated as “sometimes” or “often” present. Thirty-four specific barriers were reported by more than 25% of patients and 9 were reported by more than 50%. The sources of barriers included the person, self-care tasks, tools and technologies, and organizational, social, and physical contexts. Seven of the top 10 most prevalent barriers were related to patient characteristics; the next 3, to the organizational context (eg, life disruptions). A preliminary feasibility assessment found few item nonresponses or comprehension difficulties, good cooperation, and high data yield from both closed- and open-ended items, but also found opportunities to reduce median administration time and variability. Conclusion An instrument assessing self-care barriers from multiple system sources can be feasibly implemented in the ED. Further research is required to modify the instrument for widespread use and evaluate its implementation across institutions and cultural contexts. Self-care barriers measurement can be one component of broader inquiry into the distributed health-related “work” activity of patients, caregivers, and clinicians

The Lived Experiences of Sandwich Generation Women and Their Health Behaviours

Sandwich generation caregivers simultaneously provide care to their aging parents/in-laws and at least one child under 18 years living in the home (Sinha, 2013). In 2012, 2.23 million Canadians were considered sandwiched caregivers. This group is expected to grow as individuals are delaying marriage, resulting in delayed childrearing (Robinson, Barbee, Martin, Singer, Yegidis, 2003). Further, the government has been advocating for caregiving to move from formal to informal caregiving. Although this would help the government immensely, this creates challenges for middle-aged adults occupying multiple roles. The purpose of this study was to explore the lived experiences of sandwich generation women and the influence caregiving had on their health behaviours. This study used phenomenology as its theoretical orientation. One- on-one semi-structured interviews were the main form of data collection for nine sandwich generation women. The following themes emerged: (1) The role of the caregiver; (2) Caregiving: It is a balancing act; (3) Stormy seas: It is not always sunshine and rainbows; and (4) Silver linings amidst the turmoil. By reflecting on their past and current experiences, the sandwich generation women described the perceived challenges and benefits associated with their complex caregiving roles. Further, the mothers’ health (e.g. physical activity, nutrition, sleep and mental health) was compromised due to time constraints placed on their lives as a result of caregiving. This study provides sandwich generation caregivers with insights into the challenges and/or silver linings they may experience while caregiving. Additionally, this research provides important implications for government legislation and healthcare providers

How do informal caregivers of a person with dementia experience stress and which supports help mitigate the effect of these stressors?

Background: Alzheimer\u27s disease or related dementias (ADRD) are one of the most rapidly growing epidemics that the world is facing. Caring for a person with ADRD is challenging and often causes informal caregivers stress, loneliness, and social isolation. Purpose: The aim of this qualitative instrumental case study was to obtain a better understanding of how informal caregivers of persons with ADRD experience stress and which supports helped mitigate the effect of these stressors in their role as a caregiver. Theoretical Framework: The Model of Human Occupation focuses on therapy helping persons to engage in occupational behaviors that maintain, restore, reorganize, or develop their capacity, motive, or lifestyle. Methods: Semi-structured interview was used as the data collection tool to gain knowledge from the caregiver on how they experienced stress and what supports help to mitigate the effect of these stressors, as this was an effective way to gain the thoughts and concerns from this population. Results: There were three participants that were interviewed for the study. Fourteen categories were identified by grouping the codes together and three themes developed from those categories. The three themes were Bad days are rough, little damper on everybody, and we try to keep normal. Conclusions: The participants’ stressors were consistent with other studies that stated behaviors cause increased burden on caregivers. Although there are programs and assistance for caregivers, there is a deficit in caregivers’ referrals to resources and occupational therapy

Process Evaluation of Internet-Based Cognitive Behavioral Therapy Intervention for Informal Caregivers

Background: Informal caregivers are individuals who provide care for ill, frail, or otherwise dependent family members, siblings, or friends. Due to the caregiving demands, informal caregivers are known to experience negative mental health symptoms, such as stress or anxiety. Interventions based on Internet-based Cognitive Behavioral Therapy (ICBT) principles have been previously found to be effective for different populations and could also be considered as a plausible support option for informal caregivers. However, findings regarding effectiveness alone might not be sufficient for informing about the overall feasibility of the intervention.Objective: The aim of this process evaluation study was to evaluate the feasibility of a previously developed ICBT intervention for informal caregivers in Lithuania. More specifically, we evaluated the suitability of the intervention in relation to its content and delivery mode.Methods: Two studies were conducted. Study 1 consisted of participant evaluations of an 8-week, 8-module long therapist supported ICBT intervention. Evaluations for the Study 1 were retrieved from previously unused data, obtained from pilot testing of the intervention in which 63 informal caregivers took part. The evaluations contained of qualitative data (participant comments), as well as quantitative data (evaluations of each of the sessions). The Study 2 was an online stakeholder focus-group discussion conducted via Zoom. Eight stakeholders took part in the discussion, among whom there were social workers, medical professionals as well as individuals with caregiving experience themselves. Data were analyzed using descriptive statistics, thematic analysis, and data coding.Results: Results of the Study 1 showed that most of the pilot randomized controlled trial participants evaluated content and format of the intervention positively. These results were complemented by the findings in the Study 2, in which stakeholders evaluated the intervention as suitable and promising. In addition, stakeholders made certain suggestions for improving the intervention's usability for the informal caregivers. This included improving the instructions, providing with more guidance, and considering personalization options.Conclusion: The process evaluation helped to evaluate the feasibility of the ICBT intervention for informal caregivers in Lithuania from the two perspectives: users and stakeholders. Our findings suggest that the intervention is suitable for the target population.</p

Homes for Life & Other Stories The Use and Evaluation of Design Fiction as a Means to Understand Sensitive Settings: a Case Study of Exploring Technologies for Dementia Care

Design fictions are used in HCI to position emerging technologies in fictional future worlds, through which the complexities of our relationships with technologies can be represented, explored and experienced. They promise to stimulate discussions about sensitive topics, such as the future of technology-enabled care, a complex area with contrasting emotional, social and practical views and wishes. However, the term design fiction is currently associated with a wide range of uses, and artefacts. It is also linked to contrasting philosophies and frameworks, which are often not made explicit, as I show in an initial survey with practitioners. This makes it difficult to identify what makes a design fiction good or effective for different purposes. This thesis aims to answer the research question: How can design fiction be used and evaluated in understanding sensitive settings? I turn to the Constructive Design Research framework and adapt it to classify how design fiction is used in HCI. I outline how design fiction can be used in the showroom approach, where it is most commonly placed, but also how it can be used as a lab and field approach to gather insights into the responses to design fictions. I developed design fictions and explored how they can be used to further discussions around the use of monitoring technologies in dementia care: an area challenging to research because of ethical issues associated with deployment studies of prototype technologies. The contribution of this thesis is threefold: first, a methodological contribution into the use of design fiction in HCI and an evaluation of the Constructive Design Research framework as a means to classify research through design fiction. Second, insights into participants’ views and wishes about technology-led care in regards to dementia. Third, a design contribution of artefacts that can be used to stimulate further debate around the topic

Living in the Margins: The ICE (Intersectional-Intergenerational Cultural and Ecological) theory of EM of Pakistanis living in the UK.

Elder mistreatment (hereafter EM) is a complex, diverse and universal health and social problem (Burnes et al., 2015b) which has hitherto been predominately researched in the indigenous (white) populations of western countries. As a result, the predominant explanations are considered to be universal, potentially masking important cultural and ethnic differences. There is, however, a growing body of literature suggesting that variations exist in the perception, understanding and reporting of EM among different ethnicities of majority populations in western countries. The United Kingdom (UK), like other ethnically diverse western countries, has a heterogeneous population which includes sizeable numbers of Pakistani older people. At present, however, no comprehensive theoretical framework exists which explains the diverse and multi-etiological nature of EM among Pakistani communities; this thesis addresses this knowledge gap. A qualitative approach was used for this study underpinned by the philosophical basis of constructivist grounded theory (CGT) to explore the understanding of EM among Pakistanis living in Sheffield, UK. Two focus groups (male = 1; female = 1) and 22 in-depth individual interviews were conducted with a diverse range of participants: older people, young family members and community stakeholders. The data were analysed using the CGT principles of analytic coding, memo writing, constant comparison, theoretical sampling and theoretical saturation. The findings suggest that if EM among Pakistanis is to be better understood, then consideration has to be given to older peoples’ lifetime migratory advantages and disadvantages, their current social, economic and health status, and the existing and past relationships and interactions with their family members and with the wider society. Based on the results, a cultural and ecological theory of EM was constructed. This theory argues that intersectional and intergenerational (hereafter IG) factors help to explain who is at risk of EM in four different ecological systems: the individual, relational or family, the community and wider society. The power and privileges and consequently the marginalization of others are central arguments of the theory. It was also found that Pakistanis follow a complex but prescriptive process in addressing the issues around EM in the community. Finally, the thesis concludes with the implications and recommendations for practice, future research and policies. Widening IG relationships, changing caregiving trends and the mistreatment of older people in the target society are three examples of these implications