Parents' Experiences with Genetic Counseling After the Birth of a Baby with a Genetic Disorder: An Exploratory Study

Little is known about factors determining which families utilize genetic counseling services. We conducted semistructured interviews with parents of four children born with cystic fibrosis (CF) and ten with Down's syndrome (DS) to ascertain reasons for using, or not using, genetic counseling services in the state of Victoria, Australia. We also explored the usefulness of genetic counseling for the families who had experienced it, and the perceived role of genetic counseling. All mothers of children with CF see a genetic counselor as part of a structured education program following diagnosis through newborn screening. Information overload was identified by them as an important problem. There is no specific program for families of children with DS. Six of them had received genetic counseling and four had not, either because it was not specifically offered to them or because they did not pursue it in the context of misconceptions about its purpose. The timing of the offer of genetic counseling is important and needs to take into account parents' coping strategies after diagnosis. Several parents commented on the favorable aspects of counseling, including getting information they needed to deal with the diagnosis and relief of guilt. Better awareness of genetic counseling by referring physicians, and providing counseling at more than one visit, may contribute to a more effective service.     

Confirming satisfaction as an attitude within the service‐buying process

This paper presents research that uses cognitive and affective semantic differential scales to construct an attitude measuring instrument to be used in the services domain in the context of long applications to buy a service. The scales measure ‘Attitude to the Application Process’ (AAP) which represents satisfaction, as an internal ‘buying process’ attitude, which moderates the buying intention. Data collected over a three‐year period between 1996‐9, was analysed using exploratory and confirmatory factor analyses. The results provide evidence of a robust and useful cognitive scale. Although there were anomalies in the exploratory and confirmatory analysis of the affective scale, a robust scale is presented which represents either one or two factors. The whole measuring instrument of 14 items was developed as a means to access applicant attitudes during the application process to university — an extended and extreme application situation for first‐time consumers. The results identify that the instrument is sound and can be used in its original or modified form, depending on the context of the service‐process monitoring situation. The scales represent aspects of attitude not dealt with extensively in the literature and measure the perception of the application process as simple, open, friendly and helpful. These aspects of satisfaction mirror three attributes of service quality: assurance, responsiveness and empathy identified in previous research. Copyright © 2001 Henry Stewart Publications.     

Systems change as an outcome and a process in the work of community collaboratives for health

The widespread development of comprehensive community initiatives that aim to improve community health is driven by the need to change the systems charged with delivering the services and creating the policies related to a variety of health outcomes. Georgia's Family Connection initiative is the nation's largest statewide network of community collaboratives for health, with collaboratives operating in 159 counties. Data on community context, collaborative processes, engagement in systems change, and changes in programs and activities implemented, gathered consistently at the collaborative level over 3 years, will be used to answer the following questions. How do community contexts and the structure and processes of collaboratives affect implementation of systems change? How do systems changes affect intermediate outcomes such as the type of programs offered in a community? Longitudinal change in systems change and program implementation is described and significant predictors of between‐collaborative variation in longitudinal change for each outcome are identified.     

Validity of Treatment Target Progress Ratings as Indicators of Youth Improvement

We examined whether clinical progress ratings on the Monthly Treatment and Progress Summary form (MTPS), an idiographic treatment progress measure, were meaningfully related to changes measured by two separate standardized instruments; the Child and Adolescent Functional Assessment Scale (CAFAS) and the Child and Adolescent Level of Care Utilization System (CALOCUS). Validity coefficients were examined at intake and three-, six-, and nine-month follow-up periods. Samples were selected for each measure and follow-up period from the population of youth receiving services through the Hawaii Child and Adolescent Mental Health Division’s (CAMHD) system of care. Significant youth improvement was evident on all three measures across all follow-up intervals. The type of changes measured by the MTPS and CAFAS were more alike over longer follow-up intervals than changes measured by the CALOCUS. The MTPS captures distinct aspects of client change that overlaps somewhat with CAFAS and CALOCUS measures. The MTPS is a brief client-tailored measure that seems to provide valid, sensitive, and nonredundant client specific treatment outcome information that can be collected on a frequent basis within a complex system of care.     

A transactional systems model of autism services

There has been an escalation in the number of children identified with autism spectrum disorders in recent years. To increase the likelihood that treatments for these children are effective, interventions should be derived from sound theory and research evidence. Absent this supportive foundation, intervention programs could be inconsequential if not harmful. Although atypical, the development of children with autism should be considered initially from the perspective of the same variables that affect the development of typical children. In addition, the developmental deviations that characterize autism must be considered when developing intervention programs. Behavioral systems models describe both typical and atypical development and emphasize dynamic multidirectional person-environment transactions. The environment is viewed as having multiple levels, from the individuals with autism themselves, to larger societal and cultural levels. Behavioral systems models of human development can be generalized to a transactional systems model of services for children with autism. This model is the foundational theoretical position of the Southern Illinois University Center for Autism Spectrum Disorders. The center's programs are described to illustrate the application of the model to multiple levels of the social ecology.     

Psychological Distress in Australian Clients Seeking Family and Relationship Counselling and Mediation Services

There is little published data on the prevalence of psychological distress among individuals and couples seeking counselling and mediation services from non‐government organisations (NGOs). This national cross‐sectional study establishes the prevalence of psychological distress among clients seeking family and relationship counselling and mediation services from Relationships Australia. A national sample of 1,365 clients attending services in April to May 2012 completed the 10‐item Kessler Psychological Distress Scale (K10) after their first counselling or mediation session. Individual counselling (M = 23.01, SD = 8.97, 95% CI [22.05–23.97]) and couple counselling (M = 21.63, SD = 8.10, [20.86–22.41]) clients reported a mean K10 score comparable to those reported by clinical studies of clients with anxiety or affective disorders. One quarter to one fifth of these clients reported very high psychological distress. Clients accessing mediation services had a mean score of 18.13 (SD = 7.76; [17.51–18.75]), and one tenth of clients reported very high distress. These elevated rates of very high psychological distress suggest that mental health issues may be a significant problem for a large proportion of clients accessing counselling and mediation NGO services provided under Family Support Programs (FSP) funding. Implications for screening for mental health and appropriate treatment planning are discussed.     

Quality assurance in university guidance services

In Europe there is no common quality assurance framework for the delivery of guidance in higher education. Using a case study approach in four university career guidance services in England, France and Spain, this article aims to study how quality is implemented in university career guidance services in terms of strategy, standards and models, relationship with main stakeholders and quality assessment. The case study findings reveal that the services articulate their strategy and mission as dedication to providing a quality service. However, little objective assessment of programmes and procedures is actually being conducted.     

Understanding the Relationships Among HIV/AIDS-Related Stigma,Health Service Utilization,and HIV Prevalence and Incidence in Sub-Saharan Africa: A Multi-level Theoretical Perspective

HIV-positive individuals often face community-wide discrimination or public shame and humiliation as a result of their HIV-status. In Sub-Saharan Africa, high HIV incidence coupled with unique cultural contexts make HIV-positive individuals particularly likely to experience this kind of HIV/AIDS-related (HAR) stigma. To date, there is a relatively small amount of high-quality empirical literature specific to HAR stigma in this context, supporting the notion that a better understanding of this phenomenon is needed to inform potential interventions. This paper provides a thorough review of the literature specific to HAR stigma in Sub-Saharan Africa, finding (a) qualitative support for the existence of important relationships between HAR stigma and health service utilization and barriers; (b) a need for more quantitative study of stigma and its relationships both to health service utilization and to HIV outcomes directly; and (c) a disconnect between methodological techniques used in this context-specific literature and well-known theories about stigma as a general phenomenon. This paper then draws from its empirical literature review, as well as from well-known theoretical frameworks from multiple disciplines, to propose a theoretical framework for the ecological and multilevel relationships among HAR stigma, health service utilization, and HIV outcomes in this context.     

Emotions of austerity: Care and commitment in public service delivery in the North East of England

In the context of an austerity agenda, constructed through the deployment of aversive emotions, we offer a more-than-rational understanding of uneven austerity politics for organisations providing public services with marginalised groups. The article highlights how emotions are at the heart of the experiences of those delivering services in the North East of England. It considers the emotional toll of changes under austerity on the professional lives of participants, but also those impacts which relate to wider interpretations of loyalty and care beyond individual participants. Due to the nature of occupational roles which involve an ethos and practice of commitment, and through relations with decision makers, colleagues, service users and community over time, participants are engaged in a range of emotional work. We explore how recent experiences have highlighted a continued and in some cases accelerated undermining of their work and communities of which they are, in different ways, a part. However, they are also seen as generative of a set of significant emotionally charged responses to such challenges, which variously challenge and conform to the dominant discourse of austerity.