Journey as destination: a recovery model for families affected by concurrent disorders.

We conducted a study offering peer support and education to members of families affected by concurrent disorders (CD). This article is an analysis of the qualitative data from a mixed methods study. Using constructivist grounded theory, we analyzed semistructured interviews with participants, with half attending a 12-week support group and reading weekly workbook assignments, and the others receiving the workbook only and being interviewed 3 months later. We developed a model that describes family journeys into, through, and beyond CD, involving three phases connected by two transitional constructs. Preoccupation with the unresolved CD of an ill family member characterized the journey into and through illness, the first two phases, whereas renewal characterized the passage from illness to journeying on toward recovery. Participants had strong comments about health care providers and the service system, and spoke of the need for self-care, empowerment, support, and inclusion.

Adequacy of peritoneal dialysis in children following cardiopulmonary bypass surgery.

Acute renal failure requiring renal replacement therapy can complicate cardiopulmonary bypass in children. Peritoneal dialysis has been shown to stabilize electrolytes and improve fluid status in these patients. To assess dialysis adequacy in this setting, we prospectively measured Kt/V and creatinine clearance in five patients (6-839 days of age) requiring renal replacement therapy at our institution. Median dialysis creatinine clearance was 74.25 L/week/1.73m(2) (range 28.28-96.63 L/week/1.73m(2)). Residual renal function provided additional solute clearance as total creatinine clearance was 215.97 L/week/1.73m(2) (range 108.04-323.25 L/week/1.73m(2)). Dialysis Kt/V of >2.1 (median 4.84 [range 2.12-5.59]) was achieved in all patients. No dialysis-associated complications were observed. We conclude that peritoneal dialysis is a safe, simple method of providing adequate clearance in children who develop acute renal failure following exposure to cardiopulmonary bypass.

Hereditary and acquired angioedema: problems and progress: proceedings of the third C1 esterase inhibitor deficiency workshop and beyond.

Hereditary angioedema (HAE), a rare but life-threatening condition, manifests as acute attacks of facial, laryngeal, genital, or peripheral swelling or abdominal pain secondary to intra-abdominal edema. Resulting from mutations affecting C1 esterase inhibitor (C1-INH), inhibitor of the first complement system component, attacks are not histamine-mediated and do not respond to antihistamines or corticosteroids. Low awareness and resemblance to other disorders often delay diagnosis; despite availability of C1-INH replacement in some countries, no approved, safe acute attack therapy exists in the United States. The biennial C1 Esterase Inhibitor Deficiency Workshops resulted from a European initiative for better knowledge and treatment of HAE and related diseases. This supplement contains work presented at the third workshop and expanded content toward a definitive picture of angioedema in the absence of allergy. Most notably, it includes cumulative genetic investigations; multinational laboratory diagnosis recommendations; current pathogenesis hypotheses; suggested prophylaxis and acute attack treatment, including home treatment; future treatment options; and analysis of patient subpopulations, including pediatric patients and patients whose angioedema worsened during pregnancy or hormone administration. Causes and management of acquired angioedema and a new type of angioedema with normal C1-INH are also discussed. Collaborative patient and physician efforts, crucial in rare diseases, are emphasized. This supplement seeks to raise awareness and aid diagnosis of HAE, optimize treatment for all patients, and provide a platform for further research in this rare, partially understood disorder.

Pushing the boundaries of outreach work: the case of needle exchange outreach programs in Canada.

In this paper, we examine the challenges of defining the boundaries of outreach work using the example of needle exchange programs. In particular, we examine the multiple and inter-related factors that extend needle exchange outreach work beyond its official mandate. Using semi-structured interviews, 59 workers at 15 programs in Ontario, Canada were asked questions about operational policies and routines. An iterative and inductive analytic process was used. Over time, most outreach workers develop a well-defined sense of the activities they consider to be consistent with a harm reduction approach and the types of conduct that are considered to be acceptable and professional. Workers conceptualize their roles to encompass education and support but are reluctant to impose a rigid definition of their roles. A pragmatic and humble stance combined with strong beliefs in social justice encourages workers to find informal solutions to meet client needs that extend beyond the program mandate. As a result, doing 'extra' is the norm. These extra efforts are informal, but often regular, expansions of the service complement. Construction of flexible boundaries provides opportunities to meet many client needs and unexpected situations; however, going the extra-mile strains resources. A minority of workers blur the boundaries between private and professional lives. Further, a variety of personal, social and socio-political forces encourage outreach workers to continually redefine the boundaries of their roles and service complements.