Parents as Advocates for Pediatric Palliative Care.

Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.

Recommendations for Preventing Child Sexual Abuse in Youth-Serving Organizations: Implications From an Australian Royal Commission Review of the Literature.

Evidence suggests that tens of millions of children and adolescents are involved in youth-serving organizations (YSOs) outside of their homes on a daily basis. Children's involvement with YSOs clearly offers a broad array of emotional, social, and personal development benefits. This involvement can, however, also be associated with a variety of safety risks, including the potential for child sexual abuse (CSA) victimization and the myriad short- and long-term consequences to its victims and their families. Recognizing the significance of CSA within YSOs, the Australian Royal Commission into Institutional Responses to Child Sexual Abuse funded a comprehensive review of the literature on risk and protective factors related to CSA in institutions. This yielded more than 400 primarily research articles from the United States, United Kingdom, and Australia, examining institutional CSA victims, perpetrators, and settings. Findings were provided regarding six specific types of institutional settings, including faith-based, early childhood education, childcare and schools, health care, out-of-home/foster care, and sport. This article is based on the findings of Kaufman and Erooga's comprehensive literature review and Royal Commission findings. It provides a brief review of critical risks associated with CSA victims, perpetrators, and organizational settings, as well as highlights risks particular to specific types of YSOs and risks that are present across these organizations. Optimal prevention directions and strategies are outlined in response to identified patterns of organizational risk. Recommendations for YSO policy enhancements are also provided to complement the article's prevention focus. Finally, suggestions are offered for future research directions to foster the development of an evidence-based foundation for work in this area.

Web-based Survey Data Collection With Peer Support and Advocacy Organizations: Implications of Participatory Methods.

BACKGROUND: The 2012 National Survey of Peer-Run Organizations is one of the first to survey a nationally representative sample of mental health peer-run organizations, nonprofit venues for support and advocacy which are defined by people with psychiatric histories being in positions of authority and control. OBJECTIVES: This paper describes data collection methods and demonstrates how participatory strategies to involve people with psychiatric histories intersected with Internet research to achieve study aims. METHODS: People with psychiatric histories were involved in designing and implementing a web-based survey to collect data on peer-run organizations' operations and views on national policy. Participatory approaches were used throughout design, data collection analysis, and dissemination. CONCLUSIONS: The extensive involvement of people with psychiatric histories in project design and implementation were important strategies that contributed to this study's success.

Junkies in the House of the Lord.

The self-organization and mobilization of active drugs users is historically four decades old, but is rarely noted in the addiction, or drug policy literature. This piece looks closely at three European countries that have had varying degrees of success in organizing injection drugs users as key stakeholders in the development of non-criminalizing drug and reintegrating social policies. Indeed, the core questions here are about whether drugs users organizations can, or do have any impact in the improvement of drug treatment as well as the policies, which ultimately govern their lives. It should be noted that all of the groups studied included a few ex-users and/or non-user allies.

Leadership and characteristics of nonprofit mental health peer-run organizations nationwide.

OBJECTIVE: Mental health peer-run organizations are nonprofits providing venues for support and advocacy among people diagnosed as having mental disorders. It has been proposed that consumer involvement is essential to their operations. This study reported organizational characteristics of peer-run organizations nationwide and how these organizations differ by degree of consumer control. METHODS: Data were from the 2012 National Survey of Peer-Run Organizations. The analyses described the characteristics of the organizations (N=380) on five domains of nonprofit research, comparing results for organizations grouped by degree of involvement by consumers in the board of directors. RESULTS: Peer-run organizations provided a range of supports and educational and advocacy activities and varied in their capacity and resources. Some variation was explained by the degree of consumer control. CONCLUSIONS: These organizations seemed to be operating consistently with evidence on peer-run models. The reach of peer-run organizations, and the need for in-depth research, continues to grow.

Determinants of engagement in mental health consumer-run organizations.

OBJECTIVE: Mental health consumer-run organizations (CROs) are a low-cost, evidence-based strategy for promoting recovery. To increase CRO utilization, characteristics that promote engagement need to be identified and encouraged. The study examined individual and organizational characteristics that predict three types of engagement in CROs-attendance, leadership involvement, and socially supportive involvement. METHODS: Surveys were administered to 250 CRO members attending 20 CROs. Leaders of each CRO reported organizational characteristics through a separate questionnaire. Multilevel regression models examined relationships between predictors and indicators of CRO engagement. RESULTS: Perceived sense of community was the only characteristic that predicted attendance, leadership involvement, and socially supportive involvement (p<.001). Perceived organizational empowerment, shared leadership, peer counseling, and several demographic characteristics also predicted some measures of engagement. CONCLUSIONS: CROs that can effectively promote sense of community, organizational empowerment, shared leadership, and peer counseling may be better able to engage participants. The discussion considers several strategies to enhance these characteristics, such as collectively establishing values and practicing shared decision making.

Priorities of legislatively active veteran services organizations: a content analysis and review for health promotion initiatives.

Military and Veterans Service Organizations (MVSOs) have a unique opportunity to influence legislation and advocate for the interests of their members. However, little is known about what legislative priorities MVSOs see as important. Understanding the legislative priorities of MVSOs can inform efforts by health scientists to promote policy and laws designed to improve the health of our nation's veterans. Using a mixed methods approach, we conducted a thematic analysis of legislative priorities MVSOs promote with their legislative agendas. Most commonly, MVSOs addressed issues related to disability evaluations and ratings with the Veterans Administration and access to Veterans Administration services. Other common themes identified as priorities include benefits such as retirement, education, housing assistance for veterans, and TRICARE benefits. Findings highlight the broad range of topics MVSOs identify as legislative priorities as well as some health issues that receive relatively limited attention.

Consumer-operated service program members' explanatory models of mental illness and recovery.

Incorporating individuals' understandings and explanations of mental illness into service delivery offers benefits relating to increased service relevance and meaning. Existing research delineates explanatory models of mental illness held by individuals in home, outpatient, and hospital-based contexts; research on models held by those in peer-support contexts is notably absent. In this article, I describe themes identified within and across explanatory models of mental illness and recovery held by mental health consumers (N = 24) at one peer center, referred to as a consumer-operated service center (COSP). Participants held explanatory models inclusive of both developmental stressors and biomedical causes, consistent with a stress-diathesis model (although no participant explicitly referenced such). Explicit incorporation of stress-diathesis constructs into programming at this COSP offers the potential of increasing service meaning and relevance. Identifying and incorporating shared meanings across individuals' understandings of mental illness likewise can increase relevance and meaning for particular subgroups of service users.

Spatialising the contentious politics of ADHD: networks and scalar strategies in health social movement activism.

This paper explores the spatial dynamics of health social movement activism in the context of a specific condition, Attention Deficit Hyperactivity Disorder (ADHD). Deploying qualitative research conducted with Irish ADHD organisations, it examines how place and space affect activist networks and the dilemmas that emerge when local 'mobilisations' converge at national and transnational levels. ADHD activism in Ireland has been predominantly localist in orientation, but certain organisations have shifted their activism to the European scale as a means of gaining further political and epistemic recognition for the condition. The paper suggests that health social movement studies would benefit from an engagement with the geographies of inter-scalar relations in analysing organisations׳ action repertoires.

Consumer-operated service organizations: organizational characteristics, community relationships, and the potential for citizenship.

Consumer-operated service organizations (COSOs) are independent organizations whose administrative and financial control resides with consumers. Based on a 2008 mail survey and followup interviews conducted in 2009, this study depicts the internal characteristics and external relationships, as well as some relationships between the two, of COSOs in one state. Profiles include on the one hand, governance structures, services provided, sources and levels of funding, etc. and on the other, relationships between COSOs and other actors in the mental health system and the local community. COSOs emerge as more self-governing and community-based than required by certification requirements and as developing internally and externally in tandem. COSOs are not only adjunct or alternative service providers, but also civic associations and loci for the expression of citizenship by mentally ill people.

Customer-organization relationships: development and test of a theory of extended identities.

We develop a theory of personal, relational, and collective identities that links organizations and consumers. Four targets of identity are studied: small friendship groups of aficionados of Ducati motorcycles, virtual communities centered on Ducatis, the Ducati brand, and Ducati the company. The interplay amongst the identities is shown to order affective, cognitive, and evaluative reactions toward each target. Hypotheses are tested on a sample of 210 Ducati aficionados, and implications of these multiple, extended identities for organizations are examined.

Consumer-Operated Service Programs: monetary and donated costs and cost-effectiveness.

OBJECTIVE: Examine cost differences between Consumer Operated Service Programs (COSPs) as possibly determined by a) size of program, b) use of volunteers and other donated resources, c) cost-of-living differences between program locales, d) COSP model applied, and e) delivery system used to implement the COSP model. METHODS: As part of a larger evaluation of COSP, data on operating costs, enrollments, and mobilization of donated resources were collected for eight programs representing three COSP models (drop-in centers, mutual support, and education/advocacy training). Because the 8 programs were operated in geographically diverse areas of the US, costs were examined with and without adjustment for differences in local cost of living. Because some COSPs use volunteers and other donated resources, costs were measured with and without these resources being monetized. Scale of operation also was considered as a mediating variable for differences in program costs. RESULTS: Cost per visit, cost per consumer per quarter, and total program cost were calculated separately for funds spent and for resources donated for each COSP. Differences between COSPs in cost per consumer and cost per visit seem better explained by economies of scale and delivery system used than by cost-of-living differences between program locations or COSP model. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Given others' findings that different COSP models produce little variation in service effectiveness, minimize service costs by maximizing scale of operation while using a delivery system that allows staff and facilities resources to be increased or decreased quickly to match number of consumers seeking services.

Outcomes from consumer-operated and community mental health services: a randomized controlled trial.

OBJECTIVE: Hierarchically organized board-and-staff-run consumer-operated service programs (COSPs) are viewed as organizations that promote recovery while working in concert with community mental health agencies (CMHAs). This study's objective was to determine the effectiveness of such combined services for people with serious mental illness. METHODS: A board-and-staff-run consumer-operated drop-in center and colocated CMHA provided the context for the randomized clinical trial. In a weighted sample, 139 new clients seeking help from the CMHA were randomly assigned to agency-only service or to a combination of COSP and CMHA services. Client-members were assessed at baseline and eight months on a measure of symptom severity and on four recovery-focused outcome measures: personal empowerment, self-efficacy, independent social integration, and hopelessness. All scales used have high reliability and well-established validity. Differences in outcome by service condition were evaluated with multivariate analysis of covariance via dummy variable regression. Change scores on the five outcomes were the dependent variables. The covariates for the multivariate analysis included baseline status on each outcome measure and service condition between-group demographic differences. RESULTS: Results indicated that significant changes in three recovery-focused outcomes were associated with service condition across time: social integration (p<.001), personal empowerment (p<.006), and self-efficacy (p<.001). All changes favored the CMHA-only condition. Neither symptomology nor hopelessness differed by service condition across time. CONCLUSIONS: Hierarchically organized board-and-staff-run COSPs combined with CMHA service may be less helpful than CMHA service alone.

Consumer participation and organizational development in health care: a systematic review.

OBJECTIVE: To provide an overview of published data on user participation in Health Care. BACKGROUND: Active and passive involvement of consumers into agendas associated with Health Care is still an exception. Data on the success of user participation projects in various areas of Health Care are lacking. DESIGN: Systematic literature review using public databases. RESULTS: We identified 467 studies including five systematic reviews describing various participation projects, among them workshops, citizens' panels, focus groups, citizens' juries, and consultation meetings. A general trend favoring a specific method was not observed. The categorization of evaluable studies according to Health Care area (n = 331) yielded the following results: general medicine/preventive medicine (n = 5), internal medicine/oncology (n = 132), obstetrics and gynecology (n = 2), surgery (n = 1), neurology/psychiatry (n = 2), social medicine (n = 16), health worker training (n = 38), and research agenda setting (n = 135). Predefined qualitative parameters were extracted from 69/467 (15%) studies. Sixty one of 69 studies (88%) were retrospective analyses without control groups and without outcome assessment. Six studies had outcome assessment, three judged the outcome as successful, two as negative, and one multi-project study reported 'very successful' project assessments in 24% of the projects. In 18 studies, the level of consumer participation was described as 'informed' in 2/18, 'advisory' in 14/18, and 'decision-making' in 2/18. The following factors associated with project success were identified: adequate financing, partnerships with well institutionalized consumer organizations, advanced project logistics, small-scale projects, and adequate internal and external communication. CONCLUSIONS: Most consumer participation projects were performed in research agenda setting, internal medicine/oncology, and health worker training. Various methods have been used in the projects, the level of consumer participation was low, and the success rate of the investigated projects was moderate. Potential factors associated with project success and future areas of research are discussed.