Choice and caring: The experiences of parents supporting young people with Autistic Spectrum Conditions as they move into adulthood

This paper reports findings about parents' experiences of caring for young people with Autistic Spectrum Conditions (ASCs) moving into adulthood. In‐depth interviews were conducted with 38 parents of young people (15–21 years) with ASCs. Data were analysed thematically. In the perceived absence of service support, parents' acted as ‘care‐coordinators’ and ‘life‐supporters’ for their child as they moved into adulthood. These roles came with little choice, emotional demands and personal restrictions. Being supported was important for parents, but preferences differed regarding what this should look like. Implications for policy are discussed.     

Financial insecurity and risk experiences of justice involved persons with severe mental illness

More information is needed about the financial experiences of justice-involved persons with severe mental illness. Qualitative and quantitative methods were used to examine the financial resources, financial risk experiences, and financial literacy of a random sample of 12 mental health court participants. Mental health court participants had limited financial resources, frequently ran out of money, and had engaged very few financial tools to manage their money. Justice-involved persons with severe mental illness need financial management interventions to help develop strategies for managing depleted resources and to develop the financial resources needed to live in community settings.     

Motives for sharing illness experiences on Twitter: conversations of parents with children diagnosed with cancer

A patient- and family-centred approach in paediatric health care is important because parents are involved in making key decisions about their child’s health care and advocating for the best interest of the child. Parents and family members are increasingly turning to the internet to find and actively share information about their child’s health care. Twitter is one of many online platforms used by parents of children diagnosed with cancer to share information related to their child’s cancer experience. Existing research suggests that there is a need to better understand the motives for using Twitter for sharing content about a child’s cancer experience. Furthermore, there is a lack of theoretical frameworks for characterizing those motives. In this paper, we identify key themes of tweets posted by parents of children diagnosed with cancer and align those themes with motives inspired by the well-studied Everyday Life Information Seeking framework. We propose a new motive in addition to those associated with the framework and suggest that information can be shared for endogenous reasons as well as to meet the needs of others. This paper contributes an increased understanding of motives for sharing information about a child’s cancer journey and extends a theoretical framework for building further knowledge in this area.     

The accommodation and support needs of people with a mental illness: A process and framework for action

Abstract

This paper reports the results of a consumer-focused assessment of the accommodation and support needs of people with a mental illness living in a regional city. The study utilises a 'pathway to stability' approach to assess the phase-contingent accommodation and support needs of mental health consumers through interviews and focus groups with consumers, carers and service providers. The study identifies five broad phases of the life course impacted by mental illness—beginnings, long-term needs become clearer, instability as needs evolve, finding stability and ongoing. Five key issues—information, self-competence, comorbidity, coordination and flexibility were expanded upon in focus groups. Principles for planning future service delivery are identified. The implications of the findings and research methodology for social work practice and research are discussed.     

Mental illness etiology beliefs among African American men with serious mental illness and their social support networks

Semi-structured qualitative interviews were conducted with 26 African American men with serious mental illness who were consumers of community mental health services and 26 members of their social support networks. All participants were asked what they believed had caused the consumers’ mental illness. Consumer participants most commonly identified chronic life stressors as a causal factor, while social supports most often identified intrinsic factors such as genetics or biology as causes of mental illness. Some support participants believed that unintentional drug use had precipitated the onset of mental illness or had no causal theories. The fact that some support participants could not identify a causal explanation may indicate failure on the part of mental health care systems to engage with consumers’ social support networks and provide education about mental illness and its causes. The implications of etiology beliefs on mental health service utilization are discussed.     

The experiences of “aging” among formerly homeless adults with chronic mental illness: A qualitative study

Little is known about the life course of older adults with serious mental illness who have also been homeless. Using 44 life history interviews with 25 study participants ages 40 to 62, this study used case study and thematic analysis to examine the lived experience of such individuals as they enter their mid- and later-life years. Participants, whose lives were marred by early-onset substance abuse, symptoms of mental illness and a descent into homelessness, spoke of an awareness of aging and premature mortality. Major themes that emerged were: (1) reflecting on losses, (2) growing older and wiser, (3) struggling with normality, (4) having space and time to reevaluate, and (5) awareness of the future and “time left.” Life histories which focus on the person-in-context and their subjective experiences provide a viable research method to further the understanding of one of the most underserved and hardest-to-reach populations.     

Children of adult consumers of mental health services: Towards principles of practice

Abstract

This paper discusses the development of a peer support and advocacy Network, Young Mothers for Young Women. The Network evolved through a participatory action research project into young mothers experiences of violence. Through the Network, young women participate in a community development approach to violence reduction. As part of the Network, young women offer peer support to other young women. Network members also engage in ongoing community education and advocacy about issues, such as poverty, isolation and sexism which increase young womens vulnerability to violence. An important aim of this paper is to make visible the dialogue between social workers and young women on which the Network relies. This paper is motivated by the concern that as social work enters an era of increasing accountability it is critical that workers articulate the often invisible role they play in facilitating participatory processes.     

Making connections: Severe mental illness and closeness with other people

Much has been written about social lives of people with severe mental illness (SMI). Before social lives can flourish, however, people with SMI must first get close to other people. We studied this closeness by holding three hour-long focus groups at Fountain House, a community mental health agency in New York City. We found that closeness between two people with SMI is challenging because someone with depression, for example, may have trouble understanding someone with a different disorder (e.g., schizophrenia). Romantically, closeness is also challenging—SMI is hard to explain to partners. In the workplace, closeness is difficult because SMI can alienate co-workers. It could push them away. In mental health programs, we found that closeness has more of a chance to develop (1) during evening and weekend activities; (2) when activities are planned often enough to prevent isolation; and (3) when staff reach out to people before extended absence causes distance.     

Heterosexism,racism, and mental illness discrimination: Experiences of people with mental health conditions and their families

Experiencing discrimination related to race/ethnicity, sexual orientation, or having a mental health condition is associated with negative outcomes. Research comparing types of discrimination or considering intersectionalities is lacking. This study reports findings from interviews with people with mental illnesses (PWMI) or family members of PWMI; all study participants also are of color and/or lesbian, gay, or bisexual. Findings include the following: participants experienced multiple forms of discrimination, mental illness discrimination shares characteristics with racism and heterosexism, and heterosexuals and people of color reported more mental illness discrimination than their counterparts. Implications for change advocates, mental health providers, and researchers are offered.     

Subjective distress from trauma in older clients with severe mental illness

There is little research on older persons with severe mental illness (SMI) who have experienced trauma. We conducted an exploratory study with 174 community mental health clients with SMI who were 50 years of age or older (range 50–87; mean age 58) to examine the relationship between subjective distress related to six common traumas and post-traumatic stress symptoms while controlling for gender and other key psychiatric symptoms. With regression analysis, we found that of the six common traumas, only distress from unexpected loss of a loved one was significant. That factor accounted for the most variance in post-traumatic stress symptoms than all other factors in the model including gender, psychiatric symptoms of SMI, and other trauma. Gender and symptoms of psychosis were also significant in the model. Unexpected losses, particularly in older persons with SMI, can cause considerable emotional distress and could be related to post-traumatic stress symptoms. Practitioners should be vigilant in regularly screening older people with SMI for recent loss of loved ones and be prepared to address their distress with grief/bereavement counseling.     

Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities

This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities. The financial costs of raising a child with disabilities and their caring obligations informed many of the decisions fathers made in relation to employment. Fixed hours of work, lack of understanding from their employer, an income tied to hours worked and staff resources were cited as reasons why almost half of the fathers felt they were unable to access flexible working conditions to assist with their child’s care. Self-employment was seen by many fathers as desirable, but the perceived increase in flexibility may be accompanied by an increase in work hours. Implications for paternal well-being are discussed, along with the lifelong implications of caring on employment and financial security for families in the Australian context.     

The journey effect: how travel affects the experiences of mental health in-patient service-users and their families

The qualitative study presented in this paper explored the perspectives of service-users, family members and staff about the impact of travel issues on the lives of mental health in-patients and carers. This topic was chosen because it was prioritised by members of Xplore, a service-user and carer research group, and has received little research attention. Travel problems were a significant issue for many service-users and carers, bound-up with mental health issues and the recovery experience. Travel facilitation through the funding of taxis and the provision of guides was appreciated. A few service-users and carers positively valued distancing from their previous home environment. The meaning of travel issues could only be understood in the context of individuals’ wider lives and relationships. The significance of the findings is discussed in relation to the social model of disability.     

Outcomes of a model care coordination program for adults with mental illness under guardianship/conservatorship

Adults with serious and persistent mental illnesses, such as schizophrenia, schizoaffective disorder, and bipolar disorder, who are under guardianship/conservatorship, may experience health care, social, financial, and housing concerns, which can be addressed by care coordination programs. In such programs, providers assist with communication across service sectors, assistance with monitoring of psychiatric care, and support with practical needs. Such programs are understudied in the context of guardianship/conservatorship. Through a review of electronic records for 217 consumers who were enrolled in a model program continuously for 3 years or more, we examined trends before and after enrollment in a model care coordination program for adults with serious and persistent mental illnesses under guardianship/conservatorship. We sought to describe the number of days and rates of hospitalization, emergency room visits, and arrests before and after receiving program services. Comparing utilization among consumers three years pre- to three years post-enrollment, we identified statistically significant reductions in hospitalizations and imprisonment, but no change in state hospitalizations. We also saw some (non-significant) reduction in emergency room visits. Findings provide preliminary evidence of effectiveness of the model program; future efforts could expand its reach to more adults with serious and persistent mental illnesses.     

Trauma and health risk behaviors in people with severe mental illness

The current study tests the association between a composite measure of unsafe sex and sharing syringes for drug use with six of the more common lifetime traumatic/stressful events in 421 community mental health clients with severe mental illness (SMI) while controlling for psychiatric symptoms and related problems. A small but significant proportion of respondents said they had injected drugs with a shared needle in their lifetime (30, 7.2%), and a much larger proportion of respondents had engaged in unprotected sex (165, 39.2%). Unprotected sex and needle sharing were significantly correlated (Spearman’s rho = .20, p < .01). Frequency of lifetime traumatic events that occurred at least once was reported by one third to three quarters of clients depending on type of trauma. Regression analysis revealed that substance abuse and lifetime homelessness were significantly correlated with health risk behaviors. Practitioners need to be continuously vigilant to comorbid substance use and the housing needs of people with SMI. Limitations of the study include its cross-sectional design.     

Student perspectives on disclosure of mental illness in post-compulsory education: displacing doxa

This paper reports findings from a 12-month Australian study exploring beliefs and experiences of disclosure and course success in post-compulsory education for 20 students with mental illness. Enrolled students with disclosed or non-disclosed mental illness, teaching and support staff, and institutional practices across four sites providing vocational education and training were the three cases selected for this collective case study. Students participated in two semi-structured interviews over the course of one academic year. Disclosure was not preferred by students, most fearing that it would negatively impact upon their capacity to obtain employment in the occupation for which they were training. Further research exploring the processes, timing and outcomes of disclosure, in a wide range of post-secondary settings and with larger numbers of students, would allow for a deeper exploration of issues raised by this small study.     

The pen,the receiver and the pump: Exploring young children's experiences of having a parent with type 1 diabetes

In this article, we explore young children's experiences of having a parent with type 1 diabetes (T1D). In our research we found that the children's knowledge about T1D was not age related, and that some had more in-depth knowledge than others. This seemed related to how and what the parents taught them about diabetes, the individual child's curiosity and interest, and the parent's history with fluctuating blood sugar levels. Several children were affected by their parents' diabetes in their daily life. Our research contributes to knowledge about how children's lives can be affected by having a parent with chronic illness.     

Sense of community through supportive housing among formerly homeless individuals with serious mental illness

Much research documents the correlation between homelessness and mental illness. Often, existing research focuses on deficits that live at the intersection of these phenomena. The present study utilizes a sense of community (SOC) framework to interrogate the ways in which formerly homeless individuals with serious mental illness perceive and experience community in supportive housing. Through focus groups with 18 consumers, this study contextualizes dimensions of SOC (membership, emotional connection, needs fulfillment, and influence) for the aforementioned population. Analysis of focus group data produced 16 themes and subthemes that support and extend our understanding of SOC for a population often conceptualized as isolated and alone. Implications for policy and practice emphasize: (1) the importance of supportive housing communities and the call for policymakers to increase funding for such programing; and, (2) that practitioners facilitate housing members’ voices to effectuate change in supportive housing and increase SOC.     

Physical health decision making and decision aid preferences of individuals with severe mental illness

Individuals with severe mental illness (SMI) often suffer from comorbid physical health conditions that reduce quality of life and longevity. The integrated care movement has improved access to primary care services, but system change does not necessarily impact health behaviors. In an effort to better understand health behaviors of persons with SMI in integrated care, we explored physical health decision making and decision aid preferences. We conducted three focus groups, including two consumer groups and one mental health staff group. Data were analyzed using a grounded theory approach, employing independent coding, thematic analysis, and meaning-making processes. Data suggest that overall, the consumer groups preferred a shared decision making process, with the doctor making the final treatment decision. Staff indicated that decision making depended on a consumer’s functioning level. Consumers liked the idea of using a decision aid, and reported preferring the computerized aid. Staff felt that decision aids were dependent on consumer level of functioning. Consumers generally view primary care doctors as experts, but like the idea of using decision aids to assist in making medical decisions. Staff feel that consumers may need help in both decision making and decision aid use in primary care.     

Revitalizing sociology: urban life and mental illness between history and the present

This paper proposes a re‐thinking of the relationship between sociology and the biological sciences. Tracing lines of connection between the history of sociology and the contemporary landscape of biology, the paper argues for a reconfiguration of this relationship beyond popular rhetorics of ‘biologization' or ‘medicalization'. At the heart of the paper is a claim that, today, there are some potent new frames for re‐imagining the traffic between sociological and biological research – even for ‘revitalizing’ the sociological enterprise as such. The paper threads this argument through one empirical case: the relationship between urban life and mental illness. In its first section, it shows how this relationship enlivened both early psychiatric epidemiology, and some forms of the new discipline of sociology; it then traces the historical division of these sciences, as the sociological investment in psychiatric questions waned, and ‘the social' become marginalized within an increasingly ‘biological' psychiatry. In its third section, however, the paper shows how this relationship has lately been revivified, but now by a nuanced epigenetic and neurobiological attention to the links between mental health and urban life. What role can sociology play here? In its final section, the paper shows how this older sociology, with its lively interest in the psychiatric and neurobiological vicissitudes of urban social life, can be our guide in helping to identify intersections between sociological and biological attention. With a new century now underway, the paper concludes by suggesting that the relationship between urban life and mental illness may prove a core testing‐ground for a ‘revitalized' sociology.