Caught Between Love and Money: The Experiences of Paid Family Caregivers

This paper considers the experiences of family home care providers, paid an hourly wage by California’s In Home Supportive Services program to care for disabled or elderly relatives. These caregivers are unique in that they provide care in what Arlie Hochschild calls the “third sector” of social life, where norms and responsibilities tied to work and family intersect. Drawing on in-depth interviews and ethnographic observations of family home care providers, we find that providers perceive their paid caregiving as deviant behavior that violates social norms surrounding family care, i.e. that people should not be paid for the care of kin. Family caregivers manage the norm violation associated with their carework by offering “accounts” that 1) emphasize the tasks and skill associated with caregiving and 2) by framing their carework as a public good that benefits the larger community. These accounts allow family providers to distance themselves from the norm violation of receiving a wage for care and to reconstruct their actions in a positive light.     

Perceptions of transition-related health and mental health services among transgender adults

The opportunity to live authentically is critical for the well-being of transgender individuals. For many this requires accessing transition-related services. Current knowledge of transition-related care is limited. This study aims to elucidate experiences and needs of transgender individuals (N = 65) related to (a) therapeutic support, (b) medical care, and (c) aspects of living authentically in order to inform the development and delivery of trans-affirmative services. Findings reveal challenges accessing health care providers with trans-specific competency; gaps between critical aspects of transition-related care and receipt of services; and heterogeneity of experiences and needs. Recommendations for improving transgender-affirmative services are provided.     

Working mothers,injury and embodied care work

In this article, we examine how mothers respond when injury interrupts maternal care, using the lens of embodied care, which we conceptualize as a form of ‘body work’. We draw on findings from a qualitative research project with two organizations in Australia that help people with injuries to return to work, examining the experiences of workers who are also mothers of dependent children. Mothers' inability to care for children during periods of injury was a significant concern for our interviewees; constraints on physical labour and physical affection were particularly troubling, indicating the importance of embodied maternal caregiving to maternal roles. Yet, while these mothers inhabited the spheres of paid work and unpaid care work simultaneously, service providers did not consider embodied care work or its relevance to injured women's ongoing needs for support. While our findings reflect the experiences of injured women, they also suggest the need for a materialist analysis of the ways that both paid work and care activities are deeply enmeshed in and through the bodies of those doing the work. Employers and service organizations still fail to recognize maternal ‘body work’, and this may be typical of social attitudes more widely.     

Lesbian,Gay, Bisexual,Transgender, Queer/Questioning (LGBTQ) Perceptions and Health Care Experiences

The goal of this study was to explore attitudes, health knowledge, and experiences with health care setting and providers among lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) individuals and to identify areas for improvement. Members of Equality Florida? residing in the five counties of the Tampa Bay region were recruited through e-mail invitation to complete a 60-item questionnaire assessing demographics, attitudes, and experiences with health care providers (HCPs). Additional open-ended questions focused on experiences with HCPs and suggestions for ways to improve HCPs' cultural competency. A total of 632 respondents completed the survey of which 41% were gay men and 29% were lesbian. The majority of participants were White, non-Hispanic (93%), married/partnered (78%), and had health insurance (88%). The majority (67%) reported they always or often disclosed their sexual orientation/identity to an HCP and few had negative reactions in the health care setting (<10%). Health care settings with equality signs and gender-neutral language were perceived as safer. Participants' responses suggested need for policy changes and improved cultural competence among HCPs. Results show high rates of sexual orientation disclosure, greater acceptance from providers of LGBTQ status, and the need for examination of hospital policies and improved cultural competency.     

“They Treat us Like Pests:” Undocumented Immigrant Experiences Obtaining Health Care in the Wake of a “Crackdown” Ordinance

This article presents findings from a qualitative study of Latino immigrant experiences seeking health care services in the wake of an anti-immigrant “crackdown” ordinance similar to Arizona's SB 1070. Prince William County, Virginia's 2007 “Rule of Law” ordinance escalated law enforcement efforts that targeted this population for deportation and ordered staff to ensure that no one receive social services other than those required by federal law. This article sought to answer the questions: (1) Were undocumented immigrants able to obtain health care? (2) How do immigrants characterize their experiences with health providers? Data were gathered via semi-structured interviews (n = 57) with Latinos in a low-income neighborhood. Analysis of Spanish-language narratives found that many were dissuaded from seeking care because of high costs as well as lack of familiarity with the health care system. Others perceived that they were treated with insensitivity or outright hostility—and believed this treatment was a deliberate effort to discourage them from seeking help.     

Experience,Knowledge, and Concerns About Long-Term Services and Supports: Implications for Financing Reform

Using the 2014 Survey of Long-Term Care Awareness and Planning, this article examines Americans’ experiences, knowledge, and concerns about long-term services and supports (LTSS) and actions they are willing to take if they become disabled. The survey included 15,298 non-institutionalized respondents aged 40 to 70 years drawn from a nationally representative sample. Although many reported some experience with LTSS, knowledge of how LTSS worked was low. Respondents reported widespread concerns about becoming disabled. They preferred informal care over paid care, with a strong desire to remain in their homes. These results can be used to design reform initiatives and to motivate political support.     

The need for empathy in the hospital experience of older adults

As health care has become increasingly sophisticated, health care providers struggle to ensure that patients do not become isolated and overwhelmed with the many specialists, support personnel, and technology they encounter in their hospital experiences. Hospitalized older patients often have complex diagnoses and pain issues and may have fewer external supports than younger patients. Nurses may find a renewed focus on empathy valuable in enriching health care experiences for hospitalized older adults.     

‘It's afforded us a huge flexibility’: the impact of ‘Disabled Children's Access to Childcare Pilots’ on families with a disabled child in England

For many parents of disabled children, finding affordable and suitable childcare that meets their needs is very challenging. Research in the UK has shown that parents with disabled children experience barriers not just with cost, but also accessibility, the attitudes of childcare providers and in getting good information about sources of childcare. The Disabled Children's Access to Childcare (DCATCH) pilots was an initiative designed to improve access to childcare for disabled children in England. As part of an evaluation of DCATCH, qualitative interviews were carried out with 38 members of 22 families who had received support from the initiative. All of the families reported positive outcomes and highlighted: a beneficial impact on the parents' capacity to work; enjoyable experiences for the disabled child; increased confidence and independence for both parents and children; and the creation of time for parents to pursue other activities. The results of the DCATCH initiative support other research which argues that whilst cost is a significant factor around childcare choices for families with a disabled child, having confidence in the childcare provider's ability to meet specific needs (including complex health care needs) and providing positive experiences for the disabled child are also key, determining factors.     

The experience of Jordanian care leavers making the transition from residential care to adulthood: The influence of a patriarchal and collectivist culture

The problems faced by young people leaving care to join the adult world are well-known. The present study adds to the current body of research on the subject by exploring the post-care experiences of young Jordanian care leavers. Forty two care leavers were interviewed, thirteen of whom also took part in a focus group. The interview data were analysed qualitatively. Jordanian care leavers described many experiences similar to those reported by young people leaving care in other countries including struggles to continue education, find accommodation, secure employment, and cope financially. Of particular interest was the more specific finding that the cultural values of patriarchy, family life, and collectivism characteristic of all Arab countries had a deeply pervasive impact on many of the care leavers' post-care experiences. The reasons that brought the young people into care, and the lack of family that most experienced upon leaving care, increased the risk of them being stigmatised. For many, managing their post-care identity in a patriarchal, family-based culture proved difficult and stressful. Although some care-leavers did receive exceptional, albeit informal support from friends and employers, the challenges faced by the care leavers were often exacerbated by the cultural values explicit in a society that is patriarchal, family-based and honour-bound. The policy and practise implications of these findings are briefly acknowledged.     

The Lived Experiences of Transgender Persons: A Meta-Synthesis

This article synthesises findings from qualitative studies which have explored the lived experiences of transgender persons, using Noblit and Hare's (1998) meta-ethnography method. Thirty-one qualitative studies related to the lived experiences of transgender individuals, published between 1998 and 2013, met the inclusion criteria. A literature search was conducted between November 2012 and September 2013 using computerized searches from nine databases as well as online manual searches of key journals. Results from these individual studies revealed five major themes: (a) crossing gender and physical problems in life, (b) experiencing psychological distress, (c) encountering discrimination and social exclusion, (d) having relationships does matter, and (e) dealing with difficulties in life. Yet, despite these negative experiences, transgender people have tried to find ways to help them deal with their difficulties. We conclude that there is a need for health care providers, social workers, and health promoters to support transgender individuals, for their health and well-being. This meta-synthesis provides a clear account of what transgender individuals experience in their lives, to support the development of sympathetic health and social care services to assist them with their difficulties, and enhance their health and well-being.     

Variations in provider capacity to offer accessible health care for people with disabilities

Since social workers are likely to practice in a range of health care settings, their training focusing on human behavior in the social environment could help providers develop strategies to improve access to care for people with disabilities. In this article, results from a comprehensive survey of providers about access to health care for people with a broad range of disabilities are reported. Results suggest that a minority of providers report difficulty serving people with disabilities. However, dentists and mental health/substance abuse providers are significantly less likely than other providers to report that they provide accessible services to individuals with disabilities. These providers are less likely to report having had training related to mobility impairments, providing mirrors at their facility, having an accessible door, or providing assistance with personal care needs, and are more likely to report that their building poses a barrier for people with disabilities. Social workers are well positioned to take a leadership role in working with providers and patients to improve access to health care for people with disabilities. A social work framework of understanding the individual in a social environment may be the most appropriate perspective for creating innovative strategies for addressing the complex, multidimensional needs of people with disabilities who experience limited access to care.     

Variations in Provider Capacity to Offer Accessible Health Care for People with Disabilities

Abstract

Since social workers are likely to practice in a range of health care settings, their training focusing on human behavior in the social environment could help providers develop strategies to improve access to care for people with disabilities. In this article, results from a comprehensive survey of providers about access to health care for people with a broad range of disabilities are reported. Results suggest that a minority of providers report difficulty serving people with disabilities. However, dentists and mental health/substance abuse providers are significantly less likely than other providers to report that they provide accessible services to individuals with disabilities. These providers are less likely to report having had training related to mobility impairments, providing mirrors at their facility, having an accessible door, or providing assistance with personal care needs, and are more likely to report that their building poses a barrier for people with disabilities. Social workers are well positioned to take a leadership role in working with providers and patients to improve access to health care for people with disabilities. A social work framework of understanding the individual in a social environment may be the most appropriate perspective for creating innovative strategies for addressing the complex, multidimensional needs of people with disabilities who experience limited access to care.     

Rolling forward: addressing needs in the homeless community

ABSTRACT

The purpose of this pilot study was to use a bottom up, or grounded, approach to understand, from the perspective of the individuals living in the homeless community, what they feel would enable them to become housed and stay permanently housed. Organizations which serve homeless individuals often use a top down approach and implement programs without asking the homeless what they most need to find permanent housing. This project used intensive interviews to determine the needs of unhoused individuals in a mid-sized city with a tourist-centered economy in the south eastern United States. Working local homeless shelters, and various other intermediaries we collected data from 102 homeless individuals and 11 service providers. The major theme that emerged in our research is that the homeless individuals we interviewed were, for the most part, they were able to meet many of their basic needs, such as securing food, clothing, a place to bathe and wash their clothes, as well as obtain physical and mental care. However, they perceived lack of reliable and affordable transportation to be a significant barrier to obtaining and maintaining employment, making and keeping appointments, and maintaining their social support network.     

Personal and Professional Knowledge of and Experience With Suicide and Suicide Prevention Among Stakeholders in Clinical and Community Practice

Community-dwelling veterans at risk for suicide may be in contact with a variety of providers in agency-based settings that offer health and human services. The study aim is to describe the perspective of agency-based clinical and community providers who may come into contact with veterans in need of suicide prevention services and to examine the nature of their personal and professional relationships to individuals at risk for suicide among this sample.

This study reports on qualitative data from a sample of Veterans’ Affairs (VA) and community providers serving veterans and military families in one Midwestern state (N = 70). Providers completed a survey assessing exposure to suicide, including contact with and relationship to someone suicidal, and organizational characteristics of the providers’ employing agencies. Semi-structured interview questions probed for the nature of how they would react with suicidal individuals. Most providers (94%) had some prior contact with someone who was suicidal, and nearly three quarters (77%) knew someone who had died by suicide. Providers reported powerful emotional responses of sadness and remorse to suicidal experiences. While these providers interact with veterans and military families as part of their jobs, they may have their own history of being exposed to suicide, both professionally and personally.     

Expectations and realisations: the employment story of a young man with cerebral palsy

Britain has laws and a range of policies which promote the employment of disabled people. The lack of progress to get disabled people into paid work has resulted in huge dissatisfaction for some. Evidence of disability and employment problems is often expressed as hard data, but what of the personal experiences of trying to find employment? This article is based on interviews with ‘Nick’, a young man with cerebral palsy who wanted to recount his preparation for work, including work experience, through school, the Connexions service and the local Employment Office. He explained how he felt his voluntary work and work experiences were not fully planned and ultimately unsatisfactory. Nick found paid employment, but soon discovered that there were too many problems for him to continue. He reflected on his experiences, including his own initial confidence, his despair at the ending of his paid employment and the realities of what employment means for him.     

A qualitative look at child care selection among rural welfare-to-work participants

The welfare reforms of 1996 changed the administration of public assistance to children and families. One of the key provisions, requiring parents to join the workforce, resulted in an expanded need for child care. Prior research demonstrates that welfare recipients, particularly in rural areas, utilize informal child care arrangements. Further, recipients in rural communities face greater challenges due to a lack of transportation, geographic spread, and less access to services. This qualitative study examined the child care selection experiences of 33 welfare recipients in six rural Northern California counties. More families selected home-based than center-based child care. During their search processes, welfare recipients utilized both formal and informal routes to locate child care providers. Parents took advantage of their connections with the social service system, but also accessed their social networks for recommendations. Rural families also reported that their choices were constrained by the available programs, transportation, and by the quality of the programs they were able to access. Given the high rate of utilization of home-based arrangements among families in welfare-to-work programs, quality of care in such programs should be improved. Recommendations for increasing quality and access, as well as supports for welfare to work participants, are discussed.     

Provider and care workforce influences on quality of home-care services in England

A key trend in home care in recent years in England has been movement away from "in-house" service provision by local government authorities (e.g., counties) towards models of service commissioning from independent providers. A national survey in 2003 identified that there were lower levels of satisfaction and perceptions of quality of care among older users of independent providers compared with in-house providers. This paper reports the results of a study that related service users' views of 121 providers with the characteristics of these providers. For the most part, characteristics associated with positive perceptions of quality were more prevalent among in-house providers. Multivariate analyses of independent providers suggested that aspects of the workforce itself, in terms of age and experience, provider perceptions of staff turnover, and allowance of travel time, were the most critical influences on service user experiences of service quality.     

From “nobody's clapping for us” to “bad moms”: COVID-19 and the circle of childcare in Canada

The COVID-19 pandemic has highlighted the importance of childcare to national economies in general and women's economic participation in particular, spurring renewed interest in childcare policy in many countries that have implemented lockdowns. This paper adopts a circle of care framework to analyzes how COVID-19 has affected paid childcare, unpaid childcare and other paid work, and the relationship between these sectors. Analysis is grounded in the lived experiences of parents and childcare educators, documented through 16 semi-structured interviews during the initial lockdown (March–June 2020) in British Columbia, Canada. Experiences from educators suggest their safety was not prioritized, and that their contributions were undervalued and went unrecognized. Mothers, who provided the majority of unpaid care, not only lost income due to care demands, but struggled to access necessities, with some reporting increased personal insecurity. Those attempting to work from home also experienced feelings of guilt and distress as they tried to manage the triple burden. Similarities of experiences across the circle of care suggest the COVID-19 childcare policy response in BC Canada downloaded care responsibilities on to women without corresponding recognition or support, causing women to absorb the costs of care work, with potential long-term negative effects on women's careers and well-being, as well as on the resilience of the circle of care. Pandemic recovery and preparedness policies that aim to promote gender equality must consider all sectors of the circle of care and the relationships between them.     

Provider and Care Workforce Influences on Quality of Home-Care Services in England

Abstract

A key trend in home care in recent years in England has been movement away from “in-house” service provision by local government authorities (e.g., counties) towards models of service commissioning from independent providers. A national survey in 2003 identified that there were lower levels of satisfaction and perceptions of quality of care among older users of independent providers compared with in-house providers. This paper reports the results of a study that related service users views of 121 providers with the characteristics of these providers. For the most part, characteristics associated with positive perceptions of quality were more prevalent among in-house providers. Multivariate analyses of independent providers suggested that aspects of the workforce itself, in terms of age and experience, provider perceptions of staff turnover, and allowance of travel time, were the most critical influences on service user experiences of service quality.