Living on a low income during the cost-of-living crisis: Exploring experiences and perceptions

Background Despite recognition that social determinants are critical to health outcomes, many groups, including those with lower incomes, racial/ethnic minorities, and other historically marginalized populations, continue to experience significant social and structural barriers to care. There is need for research that incorporates patient and stakeholder engagement in developing, testing, and disseminating interventions to improve outcomes for patient populations that have been marginalized in the health system. Patients who use a language(s) other than English (LOE) for healthcare communication are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in paediatric hospitals. Canadian census data indicates 12.7% of Canadians predominantly speak a language other than French or English. This work aims to generate knowledge to improve health outcomes for children and families who speak LOE. Objectives (1) To understand the lived experience of families who speak LOE around the hospitalization of their child and (2) To understand the perspectives of patients and families who speak LOE on how the healthcare system can improve care during hospitalization. Design/Methods The premise of this study is participatory research. We designed a qualitative study involving children hospitalized in the General Paediatric Inpatient Unit at the Hospital for Sick Children. The study includes family caregivers of children age 0 to 18 years who identify as speaking LOE. Children and families could speak any language that we were able to obtain interpreter support for. We excluded patients that spoke a traditional Indigenous language as we noted this work required a separate study in partnership with the Indigenous community. We conducted semi-structured virtual individual interviews with children and families post-discharge with a medical interpreter. An interview guide was developed and transcripts were analyzed using thematic analysis. We took several steps to ensure an effective study design given our goals of participatory research including ensuring patient and family engagement throughout the design process. Results 19 families participated in the interviews and 16 different languages were represented amongst our participant groups. Our study is unique in especially unique in it's ability to recruit and interview individuals with so many different primary languages. Our study provides rich insight into opportunities within the paediatric inpatient setting for quality improvement to address the health disparities experienced by patients and families who use LOE for healthcare communication. Our analysis of the interviews identify several themes that provide insight into the lived experience of patients and families who use LOE for healthcare communication. 1) Inconsistent interpreter use affects communication “in the moment” and the ability to develop an “overall understanding” of the current clinical situation and broader healthcare context. Our participants note a "snowball effect" when interpreters are not consistently utilized. 2) In addition to language, multiple additional social factors contribute to an increased sense of vulnerability and modulates how families “trust” the healthcare system. 3) Despite families expressing positive experiences, they noted that they did not, nor expect to feel like they “belonged” within the healthcare system. It is critical to recognize the complex interplay between many factors surrounding our participants’ identities. Though they use a LOE for healthcare, the intersectional marginalization they experience was thoroughly represented during our conversations Conclusion Our research aimed to take a participatory approach to consider the lived experience of patients and families who use LOE for healthcare communication. This work builds on the current literature on patient and family centered care, experiences of families who speak LOE and participatory community-based research in the paediatric hospital settings. Our study's findings support the development of a research and intervention agenda in Canada to improve health outcomes for patients and families with LOE.

A roadmap toward equitable, coordinated, quality reproductive care for women with chronic conditions.

The study investigated lived experiences of single parent families of a high density suburb in Masvingo province, Zimbabwe. The qualitative approach utilising a descriptive survey was employed to study the phenomena. The population of the study comprised of female headed households. Households and respondents were sampled using convenience and purposive sampling. Data was collected through questionnaires, semi structured interviews and non participant observation. The data was presented and analysed in narrative form basing on the research questions and the themes which emerged. The findings from the study revealed that the extended family was an important factor in single parent families. The findings also revealed that fulfilment of family functions; physical, emotional, and psychological is sometimes a challenge in single parent families. The study established that to a greater extent the absence of one parent may contribute towards poor emotional and social development of the children. The study also established that the population studied experienced work overload, economic hardships and loneliness, especially the parents. The study recommends that single parents should form support groups where they share ideas on addressing challenges they face. The study also recommends community and extended family involvement in child rearing to provide role models in the place of the absent parent. Replica studies be conducted on single parents in other contexts to provide a holistic picture of single parenting and measures to minimise negative effects on children and parents.

Individuals with impairments involved in disability research have historically been treated as passive subjects; their ‘condition’ the only focus of interest for researchers. Such research remains almost invariably driven by professionals who have no lived experience of disability, but who evolve from a different framework of knowledge. They must constantly be aware of their own position of power within the research enterprise and take account of the relative vulnerability of those taking part in studies. There have been useful ethical developments to clarify assent and consent as a relational process in order to ensure meaningful involvement in research, even of children with complex communication needs.1 Methodological advances (e.g. integrating ethnographic approaches) have facilitated and enhanced inclusion of these children in research.2 In recent years, the individuals who are being studied have increasingly been described as ‘participants’. However, their participation is most often restricted to volunteering to a research project, personally or through a caregiver's consent. In the field of developmental disability, we have learned to value and optimize participation. In research, participation should mean much more than enrolment as members of study samples. At a minimum, it could imply that participants are given the opportunity to provide input. Paraphrasing hackneyed slogans, is clinical science ‘too important’ to be left to professionals? Rather, such research misses its crucial target if professionals do not take account of lived experience of what they are studying. Individuals with personal experience of disability, or lived experience as close relatives or caregivers, might function as stakeholders, advisors, consultants, helping to set research agendas, and in some situations as researchers themselves. DMCN’s author guidelines stress that individuals with lived experience of disability and their families should be included (as appropriate) in all stages of study development, in some instances as authors. We regularly invite them to review or write critical commentaries on related papers. This is done in order to protect against gaps and biases, promote innovation and development, and improve the quality of research by ensuring the most pertinent issues faced by disabled people are addressed appropriately. This resonates with the motto, ‘Nothing About Us Without Us’ (NAUWU), which has been adopted by disability rights advocates.3 The call originally referred to resistance to perceived societal oppression, and it can positively address empowerment in a wide array of areas, including research and scientific publishing.4 It may be unclear, however, who the ‘Us’ refers to. In other words, how well would affected persons thus participating be representative of all affected persons? Arguably, it might not be expected that these persons are representative when the focus is on exploring rather than representing multiple realities informed by individual experience. Of course, this might comply with neither the NAUWU principle nor the rigour of scientific endeavours. Also, how can we acknowledge the risk of cognitive and selection bias when anticipating overrepresentation of participants with lived experience with relatively high levels of literacy, and those who want and can be involved? This can be addressed to some extent when individuals with lived experience are organized within relevant, structured communities, assuming that such communities are the subjects of the research. They can then be integrally involved based on collective as much as personal experience. Unfortunately, the isolation of many disabled individuals that lies at the base of the NAUWU claim3 often results in effective exclusion even from such communities. We are currently working to address those issues constructively in dialogue with both individuals and groups with lived experience of developmental disability worldwide. This dialogue will always be guided by the spirit of diversity and inclusion which has been proposed to make complex social systems work better.5 Not required.

The incorporation of lived experience in mental health research has been a challenge for decades, pushing the boundaries of research to focus on the priorities of those most impacted. The people who should be the ultimate beneficiaries of research and its translation hold significant knowledge about both the topics of research and the way it should be respectfully conducted. However, despite policy, funding and most recently publishing directives that purport to support genuine lived experience-focused and -led research, progress remains slow, and debates are frequently still dominated by non-lived experience researchers in positions of power. In this paper, we explore some of the factors we need to consider to genuinely progress in mental health lived experience research, including restrictive and exclusionary thinking on authenticity, the ability to speak from multiple perspectives and the deeply personal intersections of experience in lived experience researcher identities. We then describe the ALIVE National Centre Embedded Lived Experience Research Model and an associated National Strategy for Lived Experience in Mental Health Research as responses to these pervasive issues.

The growth of online communities and social media has led to a growing need for methods, concepts, and tools for researching online cultures. Particular attention should be paid to polarizing online discussion cultures and dynamics that increase inequality in online environments. Social media has enormous potential to create good, but in order to unlock its full potential, we also need to examine the mechanisms keeping these spaces monotonous, homogenous, and even hostile toward some groups. With this need in mind, I have developed the concept and theory of othering online discourse (OOD). This chapter introduces and defines the concept of OOD and explains the key characteristics and different attributes of OOD in relation to other concepts that deal with disruptive and discriminatory behavior in online spaces. The attributes of OOD are demonstrated drawing on examples gathered from the Finnish Suomi24 (Finland24) forum.

Phenomenological analysis was used to understand how rural low-income families accessed and used child-care resources to meet the needs of their families using data from Wave 1 of the Rural Families Speak Project. In the aftermath of welfare reform, results highlight the continuing need for policy aimed at building stronger supports for families with inadequate access to child care. Key Words: child care, low-income, phenomenology, policy, rural families, welfare reform. (Family Relations, 2004, 53, 201-209) The passage of the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) of 1996, commonly known as welfare reform, changed how the government supports low-income families. This legislation changed 61 years of guaranteed benefits to eligible mothers and children, along with many services and programs for low-income families. The safety nets that once existed for these families have been removed and replaced with work-focused programs. In the aftermath of welfare reform, low-income families, perhaps more than ever before, must rely upon many sources within their environments in order to access the resources they need. With the implementation of welfare reform came many policy changes for those families receiving cash assistance and for families relying on other programs and services that changed, such as the Supplemental Security Income (SSI) program for children, Food Stamps, child support enforcement, childcare systems, and child nutrition programs. Recent studies have analyzed the impacts of welfare reform by looking at program outcomes using quantitative analysis, econometric methods, and secondary analyses of administrative data to investigate caseload decline, employment status, employment and earnings, welfare spells (Bell, 2001; Loprest, 1999; Weber, Duncan, & Whitener, 2001), and economic well-being (Porterfield, 2001; Weber et al). Although these macro-level studies give insight to general patterns and trends, the family perspective is missing-that is, the voices of families affected by policies often are muted in statistical reports. Instead of allowing families to talk about the triumphs and tribulations of their lives within a changing policy environment, previous studies have offered a generalized picture of their experiences. We argue that to understand the everyday unique experiences of families, policy researchers must begin with the family's perspective. As a decade review of literature on family policy research highlighted, the family's perspective has been virtually ignored (Bogenschneider, 2000). Moreover, few studies have taken the needed qualitative approach to understand the experiences from the perspectives of low-income families, with a few exceptions. Stack (1970) began from the family perspective by describing the survival strategies of a Black community through an ethnographic lens. Edin and Lein (1997) investigated the lived experiences of 379 urban low-income single mothers in four urban cities across the United States to understand how they pieced together the resources needed to meet the needs of their families. Newman (1999) offered an ethnographic view of inner-city poverty by letting families talk about their struggles to survive within their communities. Seccombe (1999) interviewed 47 women from small- and medium-sized communities in Florida to see their perspectives on welfare reform. Monroe and Tiller (2001) described the work of welfare-reliant women and their experiences with participants in the labor force, the rural job market, their use of support networks, and the stigma of welfare. Although these studies provide insight into the everyday experiences of low-income families, missing are those from rural low-income families. Previous studies have focused on urban low-income families or combined all families together, so the impact of one's location as low income was ignored. Rural low-income families face unique challenges due to the variability in availability and affordability of resources to help them get what they need (Lewis, 2000). …

Professional computing organisations, including the ACM, IEEE and INFORMS published statements supporting Black Lives Matter during the 2020 racial unrest in the United States. While the voices of these professional organisations are echoed from positions of power, the concerns of Black IS professors are silenced. In this opinion piece, we centre on the voices of Black professors who seek to thrive in an IS field where they are woefully underrepresented, tokenized, isolated, marginalised and excluded from positions of power. Building on the Black Lives Matter movement's momentum, we offer critical insights about our lived experiences and examine pertinent issues. These issues include systemic racism in the ivory tower and the performative nature of diversity work in the academy. In direct response to the Help the Association of Information Systems (AIS) Build a System that Provides Equality for All, we offer an inclusive framework for promoting transparency, justification, compliance and enforcement of the AIS's action plan for widening participation in IS.

Roman elegy is well known for its reversal of traditional Roman gender roles: women are presented in positions of power, chiefly but not exclusively erotic, that bear little or no relation to women's lived experience in the first centuryb.c.e. Yet the way elegy presents the beloved in a position of power over her lover, as Sharon James has observed, ‘retains standard Roman social and power structures, thus suggesting an inescapable inequity even within a private love affair: rather than sharing goals and desires, lover and beloved are placed in a gendered opposition … Hence resistant reading by thedominais an anticipated and integral part of the genre’. James's remark is indeed correct for each of the instances in which thedomina, or female beloved, speaks directly. When she does so, as James also shows, she speaks at cross-purposes with her lover, following a script that is designed ‘to destabilize him’ in an attempt to keep his interest. Yet what has not been noticed is that when the beloved is instead male, the situation is quite different. Tibullus' Marathus in poem 1.8, our sole example of a male elegiac beloved-turned-speaker, is the exception that proves the fundamental rule of gender inequity. Marathus, that is, when given the opportunity to speak, does in fact share the aims of a male lover, albeit in pursuit of his ownpuella. When the gendered opposition so integral to elegy is erased, the beloved no longer protests against the strictures of the genre; when both are male, lover and beloved alike are entitled to speak as elegiac lovers.

Stay Mad: A Love Letter to QTBIPOC Psychiatric Survivors

Understanding body image perceptions of former female athletes: A qualitative analysis

A Reflection on Joseph Smith's Restorationist Vision of Truth

Bisexuality has long been considered the “invisible sexuality”. Its unseen nature ranges from general public discourse, to academic under-representation, and even inner-community politics. While bisexuality remains the unaddressed letter within the LGBT acronym, I argue that to be rendered invisible does not negate suffering from a simultaneous – and potentially far more deliberate – rejection of bisexuality as a legitimate sexual identity. To fully explore the parameters of systemic wrongdoing to the concept of the bisexuality, this chapter focuses on the theoretical aspects of the injustice done to bisexuality via several frameworks. First, I draw upon the epistemic injustice faced by bisexual individuals regarding how their lived experiences – and therefore their knowledge about their own marginalisation – are reduced by those in the hegemonic positions, hereby diminishing the bisexual’s power as a legitimate “knower”. Second, I discuss how the bisexual (dis)position of power is further challenged by structurally addressing bisexuals as the non-dichotomous “other” in a binary structure of sexual identities, and examine how this leads to a struggle of identity negotiation.

Background:The greater proportion of children with a life-limiting condition (LLC) and their families want to remain at home as much as possible. Building capability in paediatric palliative care (PPC) for generalist health and social care professionals in nonmetropolitan regions through the Quality of Care Collaborative Australia (QuoCCA) has improved access to palliative care for families, regardless of where they live.Aim:To understand the experience of families whose child has received specialist PPC, to ensure future service capability development is informed by lived experience.Design:A retrospective, descriptive study in which parents participated in a semi-structured telephone interview guided by Discovery Interview methodology. Inductive thematic analysis identified the major learnings from participants.Participants:Parents caring for a child referred to the specialist PPC service, who received a pop-up visit and whose child is stable or who are more than 6 months bereaved.Results:Eleven parents (n = 9 mothers; n = 2 fathers) of children with an LLC (n = 5) or whose child had died (n = 6) participated in an interview. The overarching themes and subthemes were as follows: (1) burden of suffering, in which parents described grieving for the life once anticipated, confronting many life transitions and seeking quality of life for their child and (2) umbrella of support, in which parents built partnerships with professional support, activated a network of care around their family and sought responses to their whole family’s needs.Conclusion:Parents caring for a child with an LLC described significant personal, familial, social and existential adjustments. This study integrates a relational learning approach with QuoCCA education grounded in the relationships between children, families and professionals. Learning from lived experience in PPC education enhances the preparedness of generalist health and social care professionals to join a child and their family throughout their various life transitions and facilitates the goal to remain at home within their community for as long as possible. Education in PPC is an imperative component of service models, enabling regional services to gain confidence and capability in the context of a dying child and their family, empowered and informed through the voice of the family.Plain Language Summary Enhancing palliative care for children through education informed by the experience of families It is often the wish of many children/young people with a life-limiting condition to stay at home with their families as much as possible. It is important that specialist palliative care services provide training and mentoring to the family’s local care professionals to support the delivery of good care, particularly those in rural and remote areas.This article aims to integrate the lived experience of families with palliative care education, so that the education reflects and addresses the needs that they express.Parents were interviewed by telephone using a method called Discovery Interviews. This is an open interview process, guided by a spine that describes the main points of palliative care. Parents can openly talk about their experience, focusing on the areas that are important to them. Interviews were studied by four researchers, and emerging themes were discussed and summarised.The study included parents whose child/young person was receiving support from specialist palliative care and bereaved parents whose child had died more than 6 months ago. In total, eleven parents (nine mothers and two fathers) were interviewed, five participants had children currently receiving palliative care and six were bereaved.The overarching themes were as follows:Burden of suffering, in which parents described grieving for the life they had expected, confronting transitions and seeking good quality of life for their child.Umbrella of support, in which parents built partnerships with care teams and activated a network of care to address the needs of their whole family.This study allowed the families’ perspectives to be integrated into the palliative care education of care professionals in the family’s local area. The lived experience of families prepared care professionals to support families with the care of their child/young person, allowing them to remain at home as long as possible.

The challenges experienced by families in western countries, where a parent has a mental illness, are well established. However, research documenting the experiences of Chinese families with parental mental illness appears limited. This study aimed to systematically review qualitative research about the experiences of families, living in mainland China, Hong Kong, Macao, and Taiwan, where parents have a mental illness. Eight databases were comprehensively searched, along with manual search of reference lists. The identified studies were critically appraised and analysed using a thematic synthesis approach. Ten papers were identified, with nine investigating mothers' experiences, one focusing on children's experiences, and none reporting on fathers' experiences. Subsequently, only papers presenting mothers' experiences were included for thematic synthesis. Five primary themes were identified including managing parenting in the context of mental illness; failure to meet one's expectations of motherhood; being burdened by others' expectations; stigma from self, others and service providers; and support obtained and needed. Similar to western mothers, Chinese mothers struggled to balance the demands of parenting and their illness, and experienced stigma associated with being a parent with a mental illness. Western and Chinese mothers' experiences differ in regard to the influence of parents-in-law and the division of domestic labour. Future research might investigate Chinese mothers with various mental health diagnoses, the perspectives of Chinese fathers with a mental illness, and the children in these families.