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Scaling and attainment of goals in family-focused intervention

Simeonsson, Rune J, Bailey, Donald B, Huntington, Gail S, Brandon, Lori l (1991)

Evaluating the impact of early intervention as a means to prevent or ameliorate developmental disabilities has been a long standing problem and the issue of effectiveness continues to be debated. This study explored the utility of Goal Attainment Scaling as a planning and evaluation tool whereby intervention outcomes for infants and families could be documented. The 23 families in this study were participants in a larger research effort evaluating the implementation of community based, family-focused intervention. An average of 5.9 goals were written for each family, with approximately 60% of goals written for infants and 40% for families. Attainment of goals was evident in a mean T-score of 51.9 for post-test values and in documentation that approximately two-thirds of all goals were attained at least at the expected level. The practical features of Goal Attainment Scaling and the correspondence of goal attainment scores with other measures of change suggest that it may be a valuable approach to complement traditional evaluation strategies.

School performance in primary school and psychosocial problems in young adulthood among care leavers from long term foster care

Berlin M, Vinnerljung B & Hjern A (2011)

We used data from Swedish national registers for ten entire birth year cohorts (1972–1981) to examine psychosocial outcomes in young adulthood for youth that left long term foster care after age 17, comparing them with majority population peers, national adoptees and peers who had received in-home interventions before age 13. The population was followed in the registers from age 16 to 2005. Data were analyzed in Cox regression models.

Youth who left long term foster care had six-to eleven fold sex and birth year adjusted excess risks for suicide attempts, substance abuse and serious criminality from age 20, and for public welfare dependency at age 25. Overrisks were considerably lower for the in-home intervention group and the national adoptees. Adjusting results for poor school performance in the final year in primary school (ages 15–16) reduced overrisks by 38–52% for care leavers from long term foster care.

Irrespective of issues of causality, poor school performance seems to be a major risk factor for future psychosocial problems among youth who age out of long term foster care. The results suggest that promoting foster children's school performance should be given high priority by agencies.

School-based support groups for adolescents with a substance-abusing parent.

Gance-Cleveland B, Mays MZ. (2008)

BACKGROUND Adolescents with substance-abusing parents need interventions to reduce their risk for a variety of problems. School-based support groups (SBSGs) have been proposed to increase resilience in this population. OBJECTIVE The purpose of this study was to evaluate a SBSG for adolescents with substance-abusing parents. STUDY DESIGN The randomized, controlled study was conducted with high-school students (n = 109) to evaluate the impact of SBSGs on resiliency. Resiliency was operationalized as positive physical health, mental health, and risk behaviors in the presence of adverse life events. Data were collected pre- and postintervention. RESULTS Significant improvements in knowledge of substance abuse were noted. Findings suggested gender differences in coping and health outcomes and positive trends in substance use. CONCLUSIONS SBSGs may increase resilience in this at-risk population. However, there were gender differences in response to the intervention, and group facilitators should be aware that participants' gender may influence response to the groups. J Am Psychiatr Nurses Assoc, 2008; 14(4), 297-309. DOI: 10.1177/1078390308321223.

Patient/relative power in home-care nursing: a study of involvement and influence from the district nurses' point of view

Rydeman I, Törnkvist L, Gustafsson B. (2005)

The aim of the study was to describe district nurses 'views and experiences of patients ' and relatives ' involvement and influence in home-care nursing. Data were collected by means of semi-structured interviews with ten district nurses. The data analysis was interpreted by a hermeneutic method, and the SAUC model for confirming nursing was used as a theoretical framework. The findings revealed that the district nurses' views of human being, and their need to control the home-care situation as experts, were decisive factors for patient/relative power and non power in home-care nursing. The preconditions for patient/relative power, according to the district nurses, were related to whether patients/relatives felt motivated to co-operate, expressed their own wishes, and had competence. Some significant preconditions were required for the district nurses to support patient/relative power i.e., that the district nurses had patient/relative involvement and influence as an explicit nursing goal and believed that it improved home care nursing. Conclusion, this study indicates the importance of the district nurses ' awareness about their own view of human being, their attitudes on patient/relative power and their individual strategies and competence to support the patients/relatives involvement and influence in home- care nursing.

Screening family burden in clinical practice : the development of a new instrument and investigation of its correlates to psychotic disorders

Hjärthag, F. (2011)

The primary purpose of this thesis is to develop a short and user-friendly instrument for the assessment of family burden caused by psychotic disorders. A secondary purpose is to further investigate variables that might be linked to an increased burden. Of these variables, patients' reduced functioning will be addressed in more detail. As a final purpose, ratings of disorder-related variables carried out by staff will be compared to similar ratings carried out by relatives. These different purposes are investigated in five studies.In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) is created. This new screening instrument contains ten statements and shows good psychometrical properties for those dimensions that are investigated. In the second study (Paper II) results show that increased family burden can be tied to patients' impaired functioning as well as to patients' higher self ratings regarding distress. In the third study (Paper III) different parts of patients' observable behavioral functioning are investigated and results show that most functional dimensions correlate with family burden. Also staff ratings of function are compared with relatives' ratings and despite similar patterns in ratings there are differences. In the fourth study (Paper IV) demographic variables are studied and results show that only higher age and fewer contact hours correlate significantly with lower burden. Also, the BIRP instrument shows good stability. In the fifth study (Paper V) correlations with family burden are generally stronger for relatives' own ratings of illness activity as compared to symptom ratings made by staff. Relatives' ratings of illness activity do not correlate significantly with staff symptom ratings on all instruments used.The conclusions of this thesis are that the new screening instrument BIRP can be considered a good instrument to use in regular clinical practice in order to measure relatives' burden in connection to psychotic disorders. Also, the thesis contributes with knowledge about what in the psychotic disorder and which demographic factors might be linked to an increase of family burden. Findings also indicate that it matters who does the rating of a disorder-related variable. Furthermore, in this thesis a theoretical framework for family burden is presented.

Screening family burden in clinical practice : the development of a new instrument and investigation of its correlates to psychotic disorders.

Hjärthag, F. (2011)

The primary purpose of this thesis is to develop a short and user-friendly instrument for the assessment of family burden caused by psychotic disorders. A secondary purpose is to further investigate variables that might be linked to an increased burden. Of these variables, patients' reduced functioning will be addressed in more detail. As a final purpose, ratings of disorder-related variables carried out by staff will be compared to similar ratings carried out by relatives. These different purposes are investigated in five studies.In the first study (Paper I) the instrument Burden Inventory for Relatives to persons with Psychotic disturbances (BIRP) is created. This new screening instrument contains ten statements and shows good psychometrical properties for those dimensions that are investigated. In the second study (Paper II) results show that increased family burden can be tied to patients' impaired functioning as well as to patients' higher self ratings regarding distress. In the third study (Paper III) different parts of patients' observable behavioral functioning are investigated and results show that most functional dimensions correlate with family burden. Also staff ratings of function are compared with relatives' ratings and despite similar patterns in ratings there are differences. In the fourth study (Paper IV) demographic variables are studied and results show that only higher age and fewer contact hours correlate significantly with lower burden. Also, the BIRP instrument shows good stability. In the fifth study (Paper V) correlations with family burden are generally stronger for relatives' own ratings of illness activity as compared to symptom ratings made by staff. Relatives' ratings of illness activity do not correlate significantly with staff symptom ratings on all instruments used.The conclusions of this thesis are that the new screening instrument BIRP can be considered a good instrument to use in regular clinical practice in order to measure relatives' burden in connection to psychotic disorders. Also, the thesis contributes with knowledge about what in the psychotic disorder and which demographic factors might be linked to an increase of family burden. Findings also indicate that it matters who does the rating of a disorder-related variable. Furthermore, in this thesis a theoretical framework for family burden is presented.

Screening for depressive disorder in children and adolescents: validating the Center for Epidemiologic Studies Depression Scale for Children

Fendrich, M., Weissman, MM., & Warner. V. (1990)

The utility of the Center for Epidemiologic Studies Depression Scale for Children (CES-DC), a modified version of the Center for Epidemiologic Studies Depression Scale, was explored in a sample of children, adolescents, and young adults at high or low risk for depression according to their parents' diagnosis. Proband parents were participants in the Yale Family Study of Major Depression who had children between the ages of 6 and 23 years. Diagnostic and self-report information on offspring was collected over two waves, spaced 2 years apart, from 1982 to 1986. Support was obtained for the reliability and validity of the CES-DC as a measure of depressive symptoms, especially for girls and for children and adolescents aged 12-18 years. Children with major depressive disorder or dysthymia, as defined by the Diagnostic and Statistical Manual of Mental Disorders, Third Edition (DSM-III), had elevated scores in comparison with all other respondents. The CES-DC lacked diagnostic specificity; children with a range of current DSM-III diagnoses had elevated scores on the measure. A cutoff point of 15 and above for screening children and adolescents for current major depressive disorder or dysthymia may be optimal. Depressed respondents scoring below this cutoff point (false negatives) showed better social adjustment than true positives; nondepressed respondents scoring above this cutoff point (false positives) showed worse adjustment than true negatives. Factor analysis was used to construct an abbreviated, four-item version of the scale. The abbreviated scale was shown to be useful as a screen.

Screening for DSM-IV externalizing disorders with the Child Behavior Checklist: A receiver-operating characteristic analysis

Hudziak JJ, Copeland W, Stanger C, Wadsworth M. (2004)

Background:  This study examines the diagnostic accuracy of the CBCL syndrome AS scales for predicting DSM-IV Attention Deficit-Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder with or without Conduct Disorder (ODD/CD).

Methods:  The sample included 370 children (187 probands and 183 siblings) participating in a family genetic study of attention and aggressive behavior problems. Univariate and stepwise logistic regression analyses were used to derive models for predicting two diagnostic conditions: ADHD and ODD/CD.

Results:  The Attention Problems syndrome significantly predicted ADHD, and ODD/CD was significantly predicted by the Aggressive Behavior syndrome. Both scales demonstrated good diagnostic accuracy, as assessed through receiver operating characteristics analyses. Cut-point analyses confirmed the utility of low T-scores, 55 on the respective syndromes, for efficiently discriminating cases from noncases.

Conclusions:  CBCL syndromes display good diagnostic efficiency for assessing common externalizing disorders in children.

Screening for DSM-IV externalizing disorders with the Child Behavior Checklist: A receiver-operating characteristic analysis

Hudziak JJ, Copeland W, Stanger C, Wadsworth M. (2004)

BACKGROUND:
This study examines the diagnostic accuracy of the CBCL syndrome AS scales for predicting DSM-IV Attention Deficit-Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder with or without Conduct Disorder (ODD/CD).
METHODS:
The sample included 370 children (187 probands and 183 siblings) participating in a family genetic study of attention and aggressive behavior problems. Univariate and stepwise logistic regression analyses were used to derive models for predicting two diagnostic conditions: ADHD and ODD/CD.
RESULTS:
The Attention Problems syndrome significantly predicted ADHD, and ODD/CD was significantly predicted by the Aggressive Behavior syndrome. Both scales demonstrated good diagnostic accuracy, as assessed through receiver operating characteristics analyses. Cut-point analyses confirmed the utility of low T-scores, 55 on the respective syndromes, for efficiently discriminating cases from noncases.
CONCLUSIONS:
CBCL syndromes display good diagnostic efficiency for assessing common externalizing disorders in children.

Patterns of informal help- and caregiving in Sweden: a 13-year perspective

Jegermalm, M., & Jeppsson Grassman, E. (2009)

This article analyses informal help and caregiving in Sweden with a focus on the scope and trends of change over time. The discussion is based on the results of three national surveys and of one surveyconducted in the county of Stockholm. The results indicated that informal help and caregiving was common throughout the period under study. In the

s, the figures were fairly stable, while fromthe late
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s to
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there seems to have been a dramatic increase in the prevalence of such support. Two interpretative perspectives are used to discuss this pattern. One locates its point of departure in recent welfare state changes and in the substitution argument, according to which cuts in welfare services put more pressure on people to provide informal help and care. The second perspective relates to the present debate on civil society and to its possible role in contemporarysociety. According to the civil society perspective, an increase in the prevalence of informal help and caregiving might be interpreted as an expression of growing civic involvement 'in its own right',without a straightforward and simple relationship to changes in the welfare state. It is argued in the article that the two frames of interpretation should not be viewed as mutually exclusive, but rather that they represent two partly complementary approaches to the understanding of the complex dynamics of unpaid work in contemporary Swedish society.

Patterns of interaction between children with physical disabilities using augmentative and alternative communication systems and their peers

Clarke, M., & Kirton, A. (2003)

Developing peer relationships in school is an essential part of growing up. Many children who have little or no functional speech are provided with augmentative and alternative communication (AAC) systems such as speech synthesizers and books and charts of symbols/pictures/words. Such children face many barriers to communication and to developing peer relationships. To date there exists little understanding of the characteristics of interaction between children using AAC and their speaking peers. This paper reports findings from an analysis of interactions between 12 children with physical disabilities using AAC systems and their speaking peers in school. Analysis identifies the primary structures, functions, and modes of communication used by both partners in one-to-one conversation.

Se mig! Hör mig! Förstå mig

Gunnel Winlund, Susanne Rosenström Bennhagen (2004)

Kunskapen och engagemanget hos omgivningen är livsviktiga för personer med grav utvecklingsstörning. De är helt beroende av andra. Fram tills nu har det saknats ett grundläggande, samlat kunskaps- och
arbetsmaterial om vuxna personer med grav utvecklingsstörning. Boken bygger på kunskaper som utvecklats inom olika forsknings-och utvecklingsprojekt. Teori omvandlas till praktik genom talrika
vardagsexempel. Några områden som boken tar upp: Helhetssyn, normalisering, miljöns betydelse, problembeteende, begåvning, kommunikation, självständighet och lärande.

Se mig! Hör mig! Förstå mig!

Gunnel Winlund (2004)

För personer med grav utvecklingsstörning är kunskapen och engagemanget hos omgivningen livsviktig. De är beroende av att andra ser dem, hör dem och förstår dem. Filmen bygger på kunskap från olika forsknings- och utvecklingsprojekt och den visar teori omvandlat till praktik i många vardagsexempel.

Till denna film finns även en bok med samma namn.

Peer-group support for bereaved children: a qualitative interview study

Metel, M., & Barnes, J. (2011)

Keywords:
Bereavement;social isolation;support groups;well-being;peers
Background:  While it has been shown that bereaved children can experience emotional or behavioural problems, the evidence is inconclusive regarding which children would benefit from support and the kind of support to offer. This study aimed to obtain children's and parents' views on their experiences following bereavement and the usefulness of a peer-group support programme.

Method:  Thirty-nine families who had attended a community-based peer-group bereavement support programme within the previous 4 years were approached. Of the 23 with confirmed contact details, 17 agreed to participate. Qualitative interviews were conducted with 23 children (range 8 to 17 years) and 17 parents.

Results:  Children were concerned about isolation from peers and emphasized the value of meeting other children with experiences of bereavement in the group. Parents were concerned about lack of communication within the home about the bereavement, which continued after the group. Most children and parents would have liked more support, either more groups or an ongoing link.

Conclusions:  Referral to peer-group support may have the potential to improve bereaved children experiencing feelings of social isolation and help them develop coping strategies. Other family-focused support may also be needed for some children.

Pegasus: kurs för vuxna med adhd och deras närstående. Arbetsbok för kursansvariga

Hirvikoski, T., Waaler, E., Carlsson, J., Helldén, G., & Lindström, T. (2013)

Den andra upplagan av PEGASUS - kurs för vuxna med ADHD och deras närstående är en revidering och uppdatering av det kompletta psykoedukativa kursmaterialet från 2013. Inom många verksamheter har PEGASUS redan hunnit bli ett självklart första steg att erbjuda till vuxna med diagnosen ADHD.

PEGASUS har utvecklats för att bemöta behoven av information, erfarenhetsutbyte och utbildning i funktionsnedsättningen ADHD. Den andra upplagan av PEGASUS har reviderats för att på ett bättre sätt möta de varierande behoven i olika grupper och har uppdaterats med aktuell information bland annat om läkemedelsbehandling.

PEGASUS genomförs i grupp och ger ökad kunskap om ADHD, behandlingar, strategier och vad det finns för stöd att tillgå. Dessutom får deltagarna möjlighet att lära sig mer om sig själva och nå större förståelse för andras situation och på det sättet förbättra relationskvalitén. Gruppformatet ger många tillfällen för erfarenhetsutbyte med andra i liknande situation. PEGASUS är ett bra alternativ som en första psykologisk behandling efter diagnos.

Arbetsgruppen bakom PEGASUS har en lång samlad erfarenhet av arbete med personer med diagnosen ADHD. I Arbetsboken beskrivs och refereras till ett flertal studier där PEGASUS har prövats ut med goda preliminära resultat.

Searching for a Balance of Responsibilities: OECD Countries' Changing Elderly Assistance Policies

Swartz, K. (2013)

The rapid aging of OECD country populations and the now five-year-long financial crisis in Europe are causing many OECD countries to reconfigure their assistance programs for the elderly, particularly their long-term care (LTC) policies. Debates about intergenerational responsibilities are evident in recently published research papers that examine how countries are revising programs for the elderly. Building financial sustainability into program reforms has suddenly become a priority. Until just recently, reform efforts focused on creating efficiencies and better quality of services. What emerges from the recent literature is a strong sense that the OECD countries are responding to the financial crisis and the rapid aging of populations in very similar ways. Given the countries' different histories of how they provide assistance to their elderly citizens, the convergence of policy responses is not something we might have foreseen. The United States could learn much from the OECD countries' choices.

Secondary losses in bereaved children when both parents have died: a case study

Mahon, M. (1999)

The death of a child's parent engenders many primary and secondary losses. In this article, a case study is used to examine secondary losses for two children following the sudden deaths of their parents. Childhood bereavement is described as comprised of prolonged pain, gradual acclimation, and tainted experiences. The framework is used to understand primary and secondary losses, as well as the effects of secondary losses and lack of control on the process of childhood bereavement. In this case, secondary losses, especially isolation, exacerbated the bereavement processes of these children. It is proposed that anticipating secondary losses, and minimizing them when possible, perhaps by providing bereaved children more control, is an appropriate framework for intervening with parentally bereaved children.

See What I Mean: Interpreting the Meaning of Communication by People with Severe and Profound Intellectual Disabilities

Grove N, Bunning K, Porter J, Olsson C. (1999)

In a social and political climate which encourages active participation in decision-making by people who have severe and profound intellectual disabilities, the onus is often on practitioners, carers and advocates to represent the wishes and interests of individuals. The issue of the validity of their interpretations is then foregrounded. This paper discusses theoretical issues associated with the development of guidelines to support a process of validation. It is argued that meaning should be viewed as the negotiated outcome of interactions, always involving inference. Validity of interpretation is thus a continuous rather than a categorical variable, and needs to be supported by the systematic collection of evidence from a range of sources. This framework is compatible with a social constructivist view of communicative development, and allows for information derived from subjective, intuitive insights to be combined with information obtained through observation and testing.

Perceptions of psychiatric care among foreign- and Swedish-born people with psychotic disorders

Hultsjö, S., Berterö, C., & Hjelm, K. (2007)

Aim.  This paper is a report of a study to explore different perceptions of psychiatric care among foreign- and Swedish-born people with psychotic disorders.

Background.  Research from different countries reports a high-incidence of psychosis among migrants. The risk-factors discussed are social disadvantages in the new country. To understand and meet the needs of people from different countries, their perspective of psychiatric care must be illuminated and taken into consideration.

Method.  A phenomenographic study was conducted in 2005–2006 using semi-structured interviews with a convenience sample of 12 foreign-born people and 10 Swedish-born people with psychosis.

Findings.  Three categories were identified: personal and family involvement in care; relating to healthcare staff; and managing illness and everyday life. Foreign-born people differed from Swedish-born people in that they struggled to attain an everyday life in Sweden, relied on healthcare staff as experts in making decisions, and had religious beliefs about mental illness. Among Swedish-born people, the need for more support to relatives and help to perform recreational activities was important.

Conclusion.  It is important to identify individual perceptions and needs, which may be influenced by cultural origins, when caring for patients with psychosis. Previous experience of care, different ways of relating to staff, and individual needs should be identified and met with respect. Social needs should not be medicalized but taken into consideration when planning care, which illustrates the importance of multi-professional co-operation.

Selecting Graphic Symbols for an Initial Request Lexicon

Schlosser, R. W., & Sigafoos, J. (2002)

The establishment of an initial request lexicon is often targeted when introducing augmentative and alternative communication systems to beginning communicators. For many of these individuals, graphic symbols provide an effective way to communicate requests to others. Because there are literally dozens of graphic symbol sets and systems to choose from, interventionists face the dilemma of selecting those that are deemed appropriate. This article integrates theory and research concerning the selection of graphic symbols for an initial request lexicon. Directions for further research are articulated, and, when the evidence permits, suggestions for clinical practice are offered.

Selecting Graphic Symbols for an Initial Request Lexicon

Schlosser, R. W., & Sigafoos, J. (2002)

The establishment of an initial request lexicon is often targeted when introducing augmentative and alternative communication systems to beginning communicators. For many of these individuals, graphic symbols provide an effective way to communicate requests to others. Because there are literally dozens of graphic symbol sets and systems to choose from, interventionists face the dilemma of selecting those that are deemed appropriate. This article integrates theory and research concerning the selection of graphic symbols for an initial request lexicon. Directions for further research are articulated, and, when the evidence permits, suggestions for clinical practice are offered.

Self-care (D510-D572).

Snider LM, Darsaklis V. (2012)

Presents and reviews outcome measures across a wide range of attributes that are applicable to children and youth with developmental disabilities. The book uses the International Classification of Functioning, Disability and Health (ICF-CY) as a framework for organizing the various measures into sections and chapters. Each chapter co-incides with domains within Body Functions, Activities and Participation, and Personal and Environmental Factors. Advances in measurement using neuroimaging technologies and genetic testing are also included, as are chapters addressing broad measures of health and quality of life.

Each chapter provides a representative sample of useful measures, with more detailed descriptions of those with the best properties and potential utility. Most chapters follow a prescribed format: what is the construct, general factors to consider when measuring this domain; and overview of recommended measures.

This book will be invaluable for clinicians and educators seeking an appropriate, psychometrically sound measure in a particular domain of functioning that can be used with an individual child or target population. The book will also be a useful resource for researchers in the field of childhood disability.

Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations

Wehmeyer, M. L. (2005)

Although some progress has been made, the belief that students with severe cognitive and multiple disabilities will not or cannot become self-determined remains a barrier for many such students. This article revisits topics that were identified in Wehmeyer (1998) as contributing to this problem, with a particular focus on definitional issues pertaining to self-determination and control. In light of this discussion, a modified definition of self-determination is proposed and the importance for moving in this direction is discussed.

Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations

Wehmeyer, M. L. (2005)

Although some progress has been made, the belief that students with severe cognitive and multiple disabilities will not or cannot become self-determined remains a barrier for many such students. This article revisits topics that were identified in Wehmeyer (1998) as contributing to this problem, with a particular focus on definitional issues pertaining to self-determination and control. In light of this discussion, a modified definition of self-determination is proposed and the importance for moving in this direction is discussed.

Self-determination and quality of life: Implications for special education services and supports

Wehmeyer ML, Schalock RL. (2001)

The United States is engaged in a debate concerning the efficacy of the public school system
and about reforms to address the perceived inadequacies of the current system. This is not a new
debate or a unique time in the history of education, for such debates ebb and flow as
society's understanding of and emphasis on the purposes of education change. We say "purposes"
in plural form intentionally, for despite overheated rhetoric to the opposite, the educational system
has always had multiple purposes, from learning for the sake of knowledge itself to preparation
for employment and citizenship (Pulliam & Van Patten, 1995).
Currently, the debate revolves around the importance of school accountability through,
primarily, standards-based reform (Sykes & Plastrik, 1993). Although the intent of this article
is not to critique this particular type of reform, there has been concern over the possible
conflict between long-held beliefs about the education of students with dis abilities and
standards-based reform, with special attention to the extent to which testing based on state
content and performance standards narrows the curriculum to only core academic content areas
and limits the functionality of the curriculum for students with dis abilities (Committee on
Goals 2000, 1997; Committee on Appropriate Test Use, 1999; Wehmeyer, Lattin, & Agran, in
press).
Individualization is a hallmark of the federal legislation mandating the education of students
with disabilities and best practice in the field. Consequently, there is considerable concern about the
impact of mandates to provide access to the general curriculum on the education of these
students.
We begin this article, which focuses on self-determination and quality of life in special
education services and supports, with reference to these concerns for two reasons. First, we
recognize that educators working with students with disabilities can no longer consider'
curricular and instructional content as separate from the general curriculum, whether it is the
provision of transition services, the delivery of functional or occupational curriculum, or promoting
self-determination to achieve a higher quality of life. Second, we want to examine the issue of
promoting self-determination to enhance quality of life within the context of and as representing
excellent education for all students. Our contention is that a focus on self-determination
provides a means to achieve both objectives.1

Self-Efficacy: The exercise of control

Bandura, A. (1997)

Ideal for advanced undergraduate or graduate courses, or for professional use, the book is based on Bandura's theory that those with high self-efficacy expectancies - the belief that one can achieve what one sets out to do - are healthier, more effective, and generally more successful than those with low self-efficacy expectancies. He begins with a discussion of theory and method: what self-efficacy is and how it can be developed. Bandura then demonstrates how belief in one's capabilities affects development and psychosocial functioning during the course of life, underscoring provocative applications of this work to issues in education, health, psychopathology, athletics, business, and international affairs

Self-management education programmes by lay leaders for people with chronic conditions

Foster G, Taylor SJ, Eldridge SE, Ramsay J, Griffiths CJ. (2007)

BACKGROUND:
Lay-led self-management programmes are becoming widespread in the attempt to promote self-care for people with chronic conditions.
OBJECTIVES:
To assess systematically the effectiveness of lay-led self-management programmes for people with chronic conditions.
SEARCH STRATEGY:
We searched: the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library 2005, Issue 1), MEDLINE (January 1986 to May 2006), EMBASE (January 1986 to June 2006), AMED (January 1986 to June 2006), CINAHL (January 1986 to June 2006), DARE (1994 to July 2006, National Research Register (2000 to July 2006), NHS Economic Evaluations Database (1994 to July 2006), PsycINFO (January 1986 to June 2006), Science Citation Index (January 1986 to July 2006), reference lists and forward citation tracking of included studies. We contacted principal investigators and experts in the field. There were no language restrictions.
SELECTION CRITERIA:
Randomised controlled trials (RCTs) comparing structured lay-led self-management education programmes for chronic conditions against no intervention or clinician-led programmes.
DATA COLLECTION AND ANALYSIS:
Two authors independently assessed trial quality and extracted data. We contacted study authors for additional information. Results of RCTs were pooled using a random-effects model with standardised mean differences (SMDs) or weighted mean differences (WMDs) for continuous outcomes.
MAIN RESULTS:
We included seventeen trials involving 7442 participants. The interventions shared similar structures and components but studies showed heterogeneity in conditions studied, outcomes collected and effects. There were no studies of children and adolescents, only one study provided data on outcomes beyond six months, and only two studies reported clinical outcomes.
PRIMARY OUTCOMES:
Health status: There was a small, statistically-significant reduction in: pain (11 studies, SMD -0.10 (95% confidence interval (CI) -0.17 to -0.04)); disability (8 studies, SMD -0.15 (95% CI -0.25 to -0.05); and fatigue (7 studies, SMD -0.16 (95% CI -0.23 to -0.09); and small, statistically-significant improvement in depression (6 studies, SMD -0.16 95% CI -0.24 to -0.07). There was a small (but not statistically- or clinically-significant) improvement in psychological well-being (5 studies; SMD -0.12 (95% CI -0.33 to 0.09)); but no difference between groups for health-related quality of life (3 studies; WMD -0.03 (95% CI -0.09 to 0.02). Six studies showed a statistically-significant improvement in self-rated general health (WMD -0.20 (95% CI -0.31 to -0.10). Health behaviours: 7 studies showed a small, statistically-significant increase in self-reported aerobic exercise (SMD -0.20 (95% CI -0.27 to -0.12)) and a moderate increase in cognitive symptom management (4 studies, WMD -0.55 ( 95% CI -0.85 to -0.26)). Healthcare use: There were no statistically-significant differences between groups in physician or general practitioner attendance (9 studies; SMD -0.03 (95% CI -0.09 to 0.04)). There were also no statistically-significant differences between groups for days/nights spent in hospital (6 studies; WMD -0.32 (95% CI -0.71 to 0.07)). Self-efficacy: (confidence to manage condition) showed a small statistically-significant improvement (10 studies): SMD -0.30, 95% CI -0.41 to -0.19. No adverse events were reported in any of the studies.
AUTHORS' CONCLUSIONS:
Lay-led self-management education programmes may lead to small, short-term improvements in participants' self-efficacy, self-rated health, cognitive symptom management, and frequency of aerobic exercise. There is currently no evidence to suggest that such programmes improve psychological health, symptoms or health-related quality of life, or that they significantly alter healthcare use. Future research on such interventions should explore longer term outcomes, their effect on clinical measures of disease and their potential role in children and adolescents.

Self-report measures of family functioning: extensions of a factorial analysis

Bloom, B. L. and S. Naar (1994)

A factor analysis of four commonly used self-report measures of family functioning (Bloom, 1985) yielded 15 5-item factors. Five of these item sets have now been revised and strengthened. These modifications were undertaken because a review of the literature has revealed that the results of the factor analysis are being increasingly used in family studies. The rationale and description of the revisions of the factor item sets are presented. Psychometric analysis of the revised factors suggests that factor scores are highly reliable as well as stable over time. In addition to presenting comprehensive reliability data, this article provides information regarding factor score intercorrelations and structure, as well as a commentary on the factors themselves.

Self-reported coping behavior of wives of alcoholics and its association with drinking outcome

Orford, J., Guthrie, S., Nicholls, P., Oppenheimer, E., Egert, S. & Hensman, C. (1975)

The frequency of the use of coping behavior by wives of alcoholics was found to be related to their husband's drinking outcome. In general, a high frequency of coping behavior was associated with a poor outcome, but some components of coping behavior were more likely than others to be linked with a poor prognosis.

Sensation seeking: A comparative approach to a human trait

Zuckerman M. (1984)

A comparative method of studying the biological bases of personality compares human trait dimensions with likely animal models in terms of genetic determination and common biological correlates. The approach is applied to the trait of sensation seeking, which is defined on the human level by a questionnaire, reports of experience, and observations of behavior, and on the animal level by general activity, behavior in novel situations, and certain types of naturalistic behavior in animal colonies. Moderately high genetic determination has been found for human sensation seeking, and marked strain differences in rodents have been found in open-field behavior that may be related to basic differences in brain neurochemistry. Agonistic and sociable behaviors in both animals and humans and the trait measure of sensation seeking in humans have been related to certain common biological correlates such as gonadal hormones, monoamine oxidase (MAO), and augmenting of the cortical evoked potential.

The monoamine systems in the rodent brain are involved in general activity, exploratory behavior, emotionality, socialization, dominance, sexual and consummately behaviors, and intracranial self-stimulation. Preliminary studies have related norepinephrine and enzymes involved in its production and degradation to human sensation seeking. A model is suggested that relates mood, behavioral activity, sociability, and clinical states to activity of the central catecholamine neurotransmitters and to neuroregulators and other transmitters that act in opposite ways on behavior or stabilize activity in the arousal systems. Stimulation and behavioral activity act on the catecholamine systems in a brain–behavior feedback loop. At optimal levels of catecholamine systems activity (CSA) mood is positive and activity and sociability are adaptive. At very low or very high levels of CSA mood is dysphoric, activity is restricted or stereotyped, and the organism is unsocial or aggressively antisocial. Novelty, in the absence of threat, may be rewarding through activation of noradrenergic neurons.

Sense of coherence, burden and mental health in caregiving: A systematic review and meta-analysis.

Del-Pino-Casado R., Espinosa-Medina A., López-Martínez C., Orgeta V. (2019)

BACKGROUND: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers.
METHOD: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence an subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings.
RESULTS: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiverburden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higherlevels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect.LIMITATIONS: Most of the studies included in this review were cross-sectional.
CONCLUSIONS: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.

Separation–individuation conflicts in children of Holocaust survivors

Barocas, H. A., & Barocas, C. B. (1980)

This article examines the developmental conflicts of children of Holocaust Survivors with specific emphasis on psychic trauma and second-generation Survivor effects. Issues related to depression, guilt, and aggression are discussed in relation to Mahler's separation-individuation process. Developmental failures at early phases may predispose these children toward low self-esteem, narcissistic vulnerability, identity problems, and impairments in interpersonal relations. The need for further research and clinical investigation is emphasized to help develop preventive measures and attenuate the effects of the Holocaust on future generations.

Sex differences in aggression between heterosexual partners: A meta-analytic review

Archer, J. (2000)

Meta-analyses of sex differences in physical aggression to heterosexual partners and in its physical consequences are reported. Women were slightly more likely (d = -.05) than men to use one or more act of physical aggression and to use such acts more frequently. Men were more likely (d = .15) to inflict an injury, and overall, 62% of those injured by a partner were women. The findings partially support previous claims that different methods of measurement produce conflicting results, but there was also evidence that the sample was an important moderator of effect size. Continuous models showed that younger aged dating samples and a lower proportion of physically aggressive males predicted effect sizes in the female direction. Analyses were limited by the available database, which is biased toward young dating samples in the United States. Wider variations are discussed in terms of two conflicting norms about physical aggression to partners that operate to different degrees in different cultures.

Sharing experiences of care giving: A qualitative study on caregivers of patients with severe mental disorders

Joshi HL, Yadav A, Bangia H. Sharing (2008)

The present study was conducted on the primary caregivers of the patients with schizophrenia and bipolar affective disorder These patients are a major source of burden to their care givers and families. The family members, also called primary care givers, report high level of burden related to caring for their family member suffering from one of these disorders The study was conducted on 60 care givers using Focus Group Discussion as the method This method was used to get the in depth understanding of the burden and utilization of coping strategies by the caregivers. The themes that were the most resonant within the groups of care givers were social stigma of mental illness, coping strategies, patient's problems, and financial problems, effect on caregiver's health, social isolation, and thoughts regarding leaving the patient. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Shit, den här människan bryr sig om mig!: Om skolans förmåga att upptäcka och ge stöd till elever som växer upp med föräldrar som har missbruksproblem

Alexanderson Karin, Hamerin Agnetha, Lind Sofia, Malmberg Karin, Näsman Elisabet, Stenhammar Christina (2017)

Den här rapporten handlar om hur skolan kan utveckla sin förmåga att upptäcka och ge stöd till elever,
om lever i familjer med missbruk. Underlaget är ett projekt Skol-BIM (Barn i missbruksmiljö i skolan)
som har det övergripande syftet att bidra till att dessa elever ska klara sin skolgång utifrån skolans mål och därmed förbättra sina möjligheter till ett gott liv, här och nu och som vuxna. Rapportens syfte är förutom redovisning av projektet, att inspirera fler skolor att öka sin förmåga att upptäcka och ge relevant stöd till barn vars föräldrar har problem med missbruk.

Short form 36 (SF36) health survey questionnaire: normative data for adults of working age

Jenkinson C, Coulter A, Wright L. (1993)

OBJECTIVES--To gain population norms for the short form 36 health survey questionnaire (SF36) in a large community sample and to explore the questionnaire's internal consistency and validity. DESIGN--Postal survey by using a booklet containing the SF36 and several other items concerned with lifestyles and illness. SETTING--The sample was drawn from computerised registers of the family health services authorities for Berkshire, Buckinghamshire, Northamptonshire, and Oxfordshire. SAMPLE--13,042 randomly selected subjects aged 18-64 years. MAIN OUTCOME MEASURES--Scores for the eight health dimensions of the SF36. RESULTS--The survey achieved a response rate of 72% (n = 9332). Internal consistency of the different dimensions of the questionnaire was high. Normative data broken down by age, sex, and social class were consistent with those from previous studies. CONCLUSIONS--The SF36 is a potentially valuable tool in medical research. The normative data provided here may further facilitate its validation and use.

Should the government pay? Caregivers views of government responsibility and feelings of stigma about financial support.

Adamek ME (1992)

Financial support strategies to assist informal caregivers of the elderly have been implemented and/or experimented with in several states. Little is known about how receptive caregiving families are to receiving financial support from the government to assist with in-home care, particularly whether they feel stigmatized. Few existing programs have assessed caregivers' views. In examining caregivers' reactions to receiving means-tested financial assistance, it is important to assess whether they consider support of the disabled a government responsibility as well as a possible stigma. Caregivers (N = 155) of disabled veterans aged 65 and older who receive Veterans' Administration disability allowances (Aid and Attendance) were surveyed. Results indicate that caregivers feel the government is primarily responsible for supporting the long-term disabled who are cared for at home. For the most part, these caregivers did not feel stigmatized or uncomfortable receiving means-tested government assistance to support in-home care. An important implication of this study is that financial support can be a workable component of an integrated service delivery system to support informal caregiving.

Sibling Outcomes from a Randomized Trial of Evidence-Based Treatments with Substance Abusing Juvenile Offenders

Rowland, MD., Chapman, JE., & Henggeler, SW. (2008)

This study examined the substance use and delinquency outcomes for the nearest age siblings of substance abusing and delinquent adolescents that participated in a randomized clinical trial evaluating the effectiveness of integrating evidence-based practices into juvenile drug court. The sample of 70 siblings averaged 14.4 years of age, 50% were male, 71% were African-American, and 27% were white. Measures of sibling substance use and delinquency were collected at four points in time (i.e., pretreatment, 4 months, 12 months, 18 months). Multilevel Longitudinal Models were used to evaluate whether changes in sibling substance use and delinquency paralleled the treatment effects observed for their substance abusing delinquent brothers and sisters in the juvenile drug court study. Parallel sibling outcomes were obtained for substance use but not for criminal behavior, and possible reasons for the divergence in these results were discussed. The findings add meaningfully to the literature on the effects of evidence- and family-based treatments on siblings.

Sibling Outcomes from a Randomized Trial of Evidence-Based Treatments with Substance Abusing Juvenile Offenders. Available from: http://www.researchgate.net/publication/233374807_Sibling_Outcomes_from_a_Randomized_Trial_of_Evidence-Based_Treatments_with_Substance_Abusing_Juvenile_Offenders [accessed Oct 26, 2015].

Sibling Relation Across the Life Span

Cicirelli, V. (1995)

When one begins to examine the existing literature dealing with siblings, one soon becomes aware that many separate domains of sibling research exist and that there is little connection between them; for example, sibling relationships in early childhood, genetic and environmental influences on individual differences between siblings, dysfunctional sibling relation ships, adult sibling helping relationships, sibling violence and abuse, and so on. The author's aim in writing this book was to attempt to bring together for the first time studies from diverse areas of sibling research into a single volume. The book is a summary and integration of the various domains of sibling studies, extending across the life span where studies exist to make this possible. Although many gaps in the sibling research literature within and between domains of study and over the life span still exist, it is hoped that this book will motivate others to help fill in the gaps by suggesting direc tions where further research is needed.

Siblings coping strategies and mental health services: A national study of siblings of persons with schizophrenia

Friedrich RM, Lively S, Rubenstein LM. (2008)

OBJECTIVE:
This study examined the helpfulness of coping strategies and the relative importance of mental health services in coping with schizophrenia from the perspective of siblings.
METHODS:
This article presents selected survey data from a national study of 746 respondents that investigated the impact of schizophrenia on siblings' lives. The authors developed the Friedrich-Lively Instrument to Assess the Impact of Schizophrenia on Siblings (FLIISS), a closed-ended questionnaire that included questions about coping strategies and mental health services.
RESULTS:
Respondents identified services for the ill sibling, including symptom control, adequate housing, and long-term planning, as more important than direct services for themselves. The top-ranked coping strategies were education about schizophrenia, a supportive family, and seeing the ill sibling suffer less because symptoms were controlled. Understanding that families were not to blame for schizophrenia was the most helpful coping strategy for nearly three-fourths of siblings. Siblings had little contact with providers in the past; yet the majority of siblings wanted providers to be available to answer questions and clarify their role in future care. At the time of the study, respondents provided social support and helped with crises, but few coordinated the total care.
CONCLUSIONS:
Siblings identified multiple ways that providers can support and assist them in coping with the impact of schizophrenia. Education and support for siblings without schizophrenia and services for their ill siblings will become increasingly important for the well-being of siblings as they are faced with the responsibility of being the primary caregivers in the future.

Siblings experiences of having a brother or sister with autism and mental retardation: a case study of 14 siblings from 5 families

Benderix Y, Sivberg B. (2007)

The aim of this study was to describe the present and past experiences of 14 siblings from five families in terms of having a brother or sister with autism and mental retardation. Personal interviews were conducted with the siblings before their brothers or sisters were moved to a newly opened group home. Qualitative content analysis was used for the analysis of the transcribed texts. The analysis resulted in seven content categories: precocious responsibility, feeling sorry, exposed to frightening behavior, empathetic feelings, hoping that a group home will be a relief, physical violence made siblings feel unsafe and anxious, and relations with friends were affected negatively. The conclusion is that these siblings' experiences revealed stressful life conditions. Counseling for the family and for siblings is recommended to help them deal with their feelings and problems. For the siblings in these five families, a group home was a relevant alternative as a temporary or permanent placement for the child with autism and mental retardation.

Siblings of children with cancer – their experiences of participating in a person-centered support intervention combining education, learning and reflection: Pre- and post-intervention interviews

Jenholt Nolbris, M. & Hedman Ahlström, B. (2014)

Abstract
PURPOSE:
To evaluate a person-centered intervention, directed to siblings with a brother or sister newly diagnosed with cancer that combines education, learning and reflection about cancer.
METHOD:
Qualitative methods with pre- and post-intervention semi-structured interviews were conducted. Fourteen siblings aged 9-22 years participated. A qualitative content analysis was carried out.
RESULTS:
The result comprises of five themes: 'grasping for knowledge about cancer, 'thinking for hours and having nightmares', 'experiencing physical pain', 'being emotional in several ways', 'waiting for a normal, good life despite the uncertain future". Pre-intervention; a low level of knowledge of cancer treatments and its side effects was revealed; siblings slept poorly, lay awake thinking and had nightmares about cancer; they felt pain in different parts of their body; they felt emotional and angry and were anxious as cancer is life-threatening; in the future the sick child will finished treatment and recovered. Post-intervention; siblings described having specific knowledge, felt more informed, and that it was easier to understand the sick child's situation; they slept better, but still had a lot on their minds regarding the sick child; most siblings said they no longer experienced pain, felt better and were happier but could still get sad; in the future the sick child would be healthy, not exactly as before, but almost.
CONCLUSION:
Person-centered intervention helps siblings to be more knowledgeable about the sick child's cancer, leading to a more realistic view about treatments and consequences. Further studies of person-centered interventions for siblings are important.
Copyright © 2014 Elsevier Ltd. All rights reserved.

Siblings of Children With Disabilities: Research Themes

Stoneman Z. (2005)

Until the early 1980s, most researchers paid little attention to sibling relationships. Studies of mothers dominated the research agenda, to the almost total exclusion of fathers, extended families, and siblings. Although in early classic studies of families of children with disabilities, investigators embraced a family systems approach that included siblings (i.e., Farber & Jenne, 1963), this emphasis did not take root until recently. There has been an impressive growth in the number of published studies focusing on siblings of children with disabilities. In this paper, my goal is to examine themes in this research and reflect on our state of knowledge

Siblings Relationships of Children with Autism

Kaminsky, Laura & Dewey, Deborah (2001)

This study investigated sibling relationships of children with autism compared to children with Down syndrome and siblings of normally developing children. Ninety siblings (30 per group) between the ages of 8 and 18 participated in this study. Results indicated that sibling relationships in families of children with autism were characterized by less intimacy, prosocial behavior, and nurturance than those of the two comparison groups. Both siblings of children with autism and siblings of children with Down syndrome reported greater admiration of their sibling and less quarreling and competition in their relationships relative to normally developing comparison children

Siblings’ needs and issues when a brother or sister dies of cancer

Nolbris, M., & Hellstrom, A-L. (2005)

Abstract
To explore siblings'needs and issues when a brother or sister dies of cancer, interviews were conducted with 10 surviving children and young adults. The siblings expressed dissatisfaction with the information they had received and said that they had not felt involved in the dying process with the exception of the terminal period. The siblings stated that their dissatisfaction would have been reduced if doctors and nurses had provided continuous information and support. Loneliness, anxiety, anger, and jealousy were common feelings that they expressed. Friends and school were important to the siblings, representing a normal environment free from the domination of sickness. The siblings also expressed that they needed to mourn in their own way including periods of time when they did not mourn. The absence of the dead sibling was felt particularly during family celebrations. The siblings continued to have special memories and objects, and all still included the dead sibling as a member in the family.

Significant others of suicide attempter’s – their view at the time of the acute psychiatric consultation

Magne-Ingvar, Ulla & Öjehagen, Agneta (1999)

As part of the psychiatric assessment after a suicide attempt contact with a significant other could be of importance in order to obtain an additional view of the patient's situation, and thereby possibly broadening the basis of the assessment. The aims of this study were to investigate whether information from a significant other would be helpful in the psychiatric assessment of the patient, and also in assessing the well-being of significant others and their need for support. For the purposes of the study, the significant other (SO) who had been recommended by the patient was contacted directly after the suicide attempt. Almost all the patients (95%) agreed to a social worker contacting an SO, and all the contacted SOs (n = 81) agreed to take part in the study. A semi-structured interview was performed by telephone or in person on the same occasion as we interviewed the patient or as soon as possible afterwards. The study found that the SOs provided valuable additional information regarding the patient's situation. When comparing the outcomes of the interviews with the SOs and those of the patients, problem areas such as loneliness and lack of self-confidence were mentioned more often by SOs. Also, more patients were reported to be repeaters by SOs, and suicidal signals from the patient had been apprehended by 41% of them. Fifty-seven percent of the SOs who had given psychological and/or practical support to the patient stated it was a burden to them, particularly if the patient had psychiatric disorders other than adjustment disorders. It was also found that more than half of the SOs wanted individual counselling and/or counselling together with the patient. This study stresses the value of co-operation with the SOs after a suicide attempt, both in the immediate assessment of the patient and in the planning of treatment strategies.

Siri går på kalas

Annette Segerberg (2009)

Boken "Siri går på kalas" är skriven av en mamma Annette, bildkonstnär som har epilepsi. Idén till boken fick hon när hennes dotter ställde frågan vad som händer när Annette får anfall. Anette skriver "Som förälder behöver man ibland hjälp att förklara sin och även andras epilepsi för barnen". Boken är en bliderbok och passar barn från ca 3 år till 12 år.

Six years after the wave. Trajectories of posttraumatic stress following a natural disaster

Johannesson, B. J., Arinell, H., & Arnberg, F. K. (2015)

Background
The characteristics of long-term trajectories of distress after disasters are unclear, since few studies include a comparison group. This study examines trajectories of recovery among survivors in comparison to individuals with indirect exposure.

Methods
Postal surveys were sent to Swedish tourists, repatriated from the 2004 Indian Ocean tsunami (n = 2268), at 1, 3, and 6 years after the tsunami to assess posttraumatic stress (PTS) and poor mental health. Items were used to ascertain high and moderate disaster exposure groups and an indirect exposure comparison group.

Results
Long-term PTS trajectories were best characterized by a resilient (72.3%), a severe chronic (4.6%), a moderate chronic (11.2%) and a recovering (11.9%) trajectory. Trajectories reported higher levels of PTS than the comparison group. Exposure severity and bereavement were highly influential risk factors.

Conclusions
These findings have implications regarding anticipation of long-term psychological adjustment after natural disasters and need for interventions after a single traumatic event with few secondary stressors.

Personlig assistans för barn. Tillsyn av enskilda assistansanordnare

Inspektionen för vård och omsorg. (2014)

Under 2011 infördes förändringar i lagstiftningen för personer med
funktionsnedsättning i syfte att förbättra förutsättningarna för kvalitet och trygghet för de som har personlig assistans.

Denna rapport är en redovisning av resultatet från inspektioner genomförda
våren 2013 av 50 enskilda assistansanordnare som hade tillstånd att bedriva
assistans för barn. Syftet med tillsynen var att granska om insatserna för barnen var av god kvalitet och rättssäkra samt om barnperspektivet beaktades i verksamheterna. Fokus under inspektionerna låg på ledningssystemet för det systematiska kvalitetsarbetet, den sociala dokumentationen, möjligheterna till kompetensutveckling för assistenterna, samt barnens möjligheter till delaktighet, att komma till tals och att få sina behov av fysisk och psykisk utveckling tillgodosedda. Redovisningen baseras på intervjuer med verksamhetsansvariga, dokumentationsgranskning och samtal med barn.

Slutsatser och bedömningar
Det stora flertalet assistansanordnare hade ett ledningssystem, men det fanns behov av förbättringar.
Nästan samtliga anordnare hade kompetensutveckling för sina assistenter, men den varierade stort i omfattning. Eftersom det saknas formella kompetenskrav för assistenter ställer det speciella krav på anordnaren att säkerställa att barnet genom sina assistenter får insatser av god kvalitet.
Stora brister i dokumentationen uppmärksammades när det gällde såväl hantering av handlingar som innehåll - brister som kan äventyra barnens rättssäkerhet. Brister i dokumentationen gällde också barnens genomförandeplaner, vilket påverkar barnens möjligheter till delaktighet.
Drygt hälften av anordnarna uppgav att de på olika sätt och i olika omfattning beaktade barnperspektivet, barns behov och/eller barns bästa. Det var bara hos en mindre andel av anordnarna som barnperspektivet uttalat ingick i ledningssystemet. Detta försvårar samtidigt för anordnare att på ett systematiskt sätt säkra att barnperspektivet genomsyrar hela verksamheten.
Möjligheten till frigörelse och utveckling för barn med egna föräldrar eller närstående som personliga assistenter bör uppmärksammas i tillsynen.
Samtal har förts med för få barn för att kunna säga något ur barnens perspektiv om hur personlig assistans för barn fungerar generellt eller hos enskilda assistansanordnare. Men i de samtal som genomförts framkommer en positiv bild av barnens upplevelse av sin assistans.
För att förbättra möjligheterna att ta del av synpunkter från barn med personlig assistans behöver tillsynen utveckla metoder för samtal med barn, men också avseende alternativa sätt att inhämta information om barnen.

Skolans metoder för att förebygga psykisk ohälsa hos barn – en nationell inventering i grundskolor och gymnasieskolor

Socialstyrelsen (2009)

Skolan kan ha en viktig roll för att främja psykisk hälsa bland barn och unga och för att tecken på psykisk ohälsa bland eleverna upptäcks tidigt. Hur dessa möjligheter ska tas till vara är en viktig fråga i det fortsatta preventiva arbetet. Ytterst handlar det om skolans förutsättningar att förmedla kunskap. En hälsofrämjande och förebyggande verksamhet som är väl utformad kan förändra hela skolans klimat och förbättra skolans möjligheter att klara sitt kärnuppdrag

UPP-centrum genomförde i början av år 2008 en enkätundersökning i ett urval grund- och gymnasieskolor för att få en uppfattning om vilka program och strukturerade arbetssätt som dessa använder för att upptäcka och åtgärda tidiga tecken på psykisk ohälsa. Undersökningen ingick i ett större uppdrag från regeringen att inventera metoder som används för att förebygga psykisk ohälsa hos barn.

Enkäten bestod i huvudsak av frågor inom följande områden:

Vilka program/strukturerade arbetssätt man använder i skolan för tidig upptäckt av barn som riskerar att utveckla psykisk ohälsa?
Vilka metoder/strukturerade arbetssätt man använder i skolan för att åtgärda/stödja barn som riskerar att utveckla psykisk ohälsa?
Deltar skolan i någon form av samverkan och i så fall med vem/vilka?
Vilka behov finns det av kunskapsstöd och rekommendationer?
Resultaten måste tolkas med försiktighet eftersom svarsfrekvensen bara uppgick till 58 procent, men de tyder ändå på att skolorna använder en relativt stor mängd program och strukturerade arbetssätt med ett universellt preventivt syfte i sitt arbete med att motverka mobbning och normbrytande beteende. Inte minst har många skolor utarbetat egna sådana program och strukturerade arbetssätt. Drygt hälften av skolorna hade utvärderat de program och arbetssätt som de använder. Även när det gäller föräldrastöd och föräldrasamverkan har många skolor utarbetat egna program och strukturerade arbetssätt, men många använder också etablerade program och arbetssätt. En tredjedel av de svarande skolorna använde inget program eller strukturerat arbetssätt för föräldrastöd och föräldrasamverkan. Bland dem som använde sådana program och arbetssätt hade omkring hälften utvärderat det.

En stor majoritet av skolorna uppgav att det finns nedskrivna rutiner eller handlingsplaner för hur man ska gå till väga när någon ur personalen tidigt upptäcker elever som visar tecken på psykisk ohälsa. Det var också en tydlig majoritet av de svarande skolorna som sade att de samverkar med andra verksamheter utanför skolan i syfte att upptäcka, förebygga eller åtgärda psykisk eller psykosocial ohälsa. Vanligast var samverkan med socialtjänsten och barn- och ungdomspsykiatrin, men även polisen var en vanlig samverkanspart. Färre skolor sade att de har samverkansavtal med andra verksamheter, och ännu färre att de hade dokumenterat och utvärderat samverkan.

Områden som skolorna nämnde som viktiga för kunskapsstöd var om barn och unga i olika riskmiljöer, funktionsnedsättning/diagnoser samt olika program för tidig upptäckt samt för stöd och behandling. Skolorna tillfrågades också om behovet av allmänna råd eller rekommendationer för att välja program eller arbetssätt i arbetet att upptäcka, åtgärda och förebygga psykisk ohälsa och i så fall inom vilka områden. Även om de flesta efterfrågar allmänna råd och rekommendationer i allmänhet pekar en del av svaren på att vissa områden är mer angelägna än andra. Det gäller bl.a. depressioner, självskadebeteende, ätstörningar, mobbning samt föräldrastöd och föräldrasamverkan.

Sammanfattningsvis leder resultaten till tre centrala slutsatser inför det fortsatta arbetet med skolans roll och insatser för elever med psykisk ohälsa:

Skolans uppdrag och roll behöver förtydligas i förhållande till arbetet med att förebygga psykisk ohälsa hos barn och unga. Ingen annan verksamhet har så breda och långvariga kontakter med barn och unga som skolan. Skolans arbete för elevernas personliga utveckling kan, direkt och indirekt, påverka deras psykiska hälsa. Det kan öka möjligheterna att tidigt upptäcka tecken på psykisk ohälsa och att ge rätt stöd åt barn och unga med tecken på psykisk ohälsa. Det finns också ett tydligt samband mellan skolans kunskapsmål och psykisk hälsa.
Det behövs fortsatta studier av de program och strukturerade arbetssätt som skolan använder för att tidigt upptäcka tecken på ohälsa bland elever och om de program och arbetssätt som används för att ge elever med tecken på psykisk ohälsa stöd. Dessutom behövs fördjupade analyser av vad andra program och arbetssätt, som används i t.ex. arbetet mot mobbning, kan betyda för möjligheterna att förebygga psykisk ohälsa hos barn.
Skolan behöver bättre tillgång till kunskaper om barns psykiska hälsa och om hur de kan arbeta med att upptäcka tidiga tecken på psykisk ohälsa och själva eller i samverkan med andra ge elever med tecken på psykisk ohälsa rätt stöd.

Skolverkets Allmänna råd

Skolverket (2008)

Skolverkets allmänna råd för att stödja vid bedömning och betygsättning för kommunal vuxenutbildning, särskild utbildning för vuxna och utbildning i svenska för invandrare.

Perspektiv på en skola för alla.

Brodin J, Lindstrand P. (2010)

Perspektiv på en skola för alla
Frågan om en skola för alla eller inkluderande undervisning väcker många känslor och tankar. Vad betyder egentligen en skola för alla och hur förhåller vi oss till den? Är inklusion bara ett politiskt, socialt och ideologiskt mål eller betyder det någonting mer? I denna reviderade upplaga presenterar författarna nya forskningsrön om inkludering.

Pharmacotherapy for parents with attention-deficit hyperactivity disorder (ADHD): Impact on maternal ADHD and parenting

Chronis-Tuscano, A., & Stein, M. A. (2012)

Given the high heritability of the disorder, attention-deficit hyperactivity disorder (ADHD) is common among parents of children with ADHD. Parental ADHD is associated with maladaptive parenting, negative parent-child interaction patterns and a diminished response to behavioural parent training. We describe our previous research demonstrating that stimulant medications for mothers with ADHD are associated with reductions in maternal ADHD symptoms. Although limited beneficial effects on self-reported parenting were also found in our study, the impact of ADHD medications on functional outcomes related to parenting and family interactions may not be sufficient for many families. Many questions remain with regard to how best to treat multiplex ADHD families in which a parent and child have ADHD. In particular, future studies are needed: (1) to evaluate how best to sequence pharmacotherapy, psychosocial treatment for adult ADHD and behavioural parenting interventions; (2) to determine the best approach to maintaining treatment effects over the long term for both parents and children; and (3) to identify individual predictors of treatment response.

Phase I evaluation of the television assisted prompting system to increase completion of home exercises among stroke survivors

Lemoncello R, Sohlberg MM, Fickas S, Albin R, Harn BE. (2011)

PURPOSE. Effective delivery of dysphagia exercises requires intensive repetition, yet many brain injury survivors demonstrate difficulty adhering to home programmes. The Television Assisted Prompting (TAP) system provides a novel method to deliver intensive in-home therapy prompts. Specific research questions compared the effectiveness of the TAP system to typical practice on programme adherence, satisfaction and caregiver burden. METHOD. A within-participant alternating treatment design with random assignment of treatment condition compared exercise programme adherence across TAP and typical practice delivery conditions, replicated across three participants. Data included quantitative programme completion rates, satisfaction survey reports and caregiver burden questionnaire results, as well as qualitative interview findings. RESULTS. A large treatment effect was demonstrated for two participants; exercise programme completion rates increased by 6-17 times typical practice levels with the TAP system. TAP supported sustained practice over the course of the experiment for the third participant despite minimal differences between conditions. Participants reported high satisfaction and endorsed the TAP system. There was no significant change in caregiver burden. CONCLUSION. The TAP system provided a novel assistive tool to support home programme completion of intensive exercise regimens for clients with cognitive impairment and care providers with significant burden. Future research must ensure continued development of a reliable and intuitive system.

Physiology and neurobiology of stress and adaptation: central role of the brain

McEwan, B.S. (2007)

The brain is the key organ of the response to stress because it determines what is threatening and, therefore, potentially stressful, as well as the physiological and behavioral responses which can be either adaptive or damaging. Stress involves two-way communication between the brain and the cardiovascular, immune, and other systems via neural and endocrine mechanisms. Beyond the "flight-or-fight" response to acute stress, there are events in daily life that produce a type of chronic stress and lead over time to wear and tear on the body ("allostatic load"). Yet, hormones associated with stress protect the body in the short-run and promote adaptation ("allostasis"). The brain is a target of stress, and the hippocampus was the first brain region, besides the hypothalamus, to be recognized as a target of glucocorticoids. Stress and stress hormones produce both adaptive and maladaptive effects on this brain region throughout the life course. Early life events influence life-long patterns of emotionality and stress responsiveness and alter the rate of brain and body aging. The hippocampus, amygdala, and prefrontal cortex undergo stress-induced structural remodeling, which alters behavioral and physiological responses. As an adjunct to pharmaceutical therapy, social and behavioral interventions such as regular physical activity and social support reduce the chronic stress burden and benefit brain and body health and resilience.

Pictures as Communication Symbols for Students with Severe Intellectual Disability

Stephenson, J. och Linfoot, K. (1996)

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Pictures as Communication Symbols for Students with Severe Intellectual Disability

Stephenson, J. och Linfoot, K. (1996)

The use of pictographic symbols for expressive or receptive communication can be a valuable skill for persons with severe intellectual disability. This article reviews knowledge about picture recognition and use derived from cross-cultural studies, studies with young children, and studies with persons with intellectual disability in an attempt to clarify how picture skills emerge and how pictures come to be used as symbols for the objects they depict.

Pilot evaluation of a group therapy program for children bereaved by suicide

Daigle, M.S., & Labelle, R. J. (2012)

Abstract
BACKGROUND:
Thousands of children are bereaved each year by suicide, yet there exists very little literature specifically on the psychological care, programs, and interventions available to help them.
AIMS:
(1) To build and validate theoretical models for the Group Therapy Program for Children Bereaved by Suicide (PCBS); (2) to test these models in a preliminary evaluation.
METHODS:
In the first part, we built theoretical models, which were then validated by scientists and clinicians. In the second part, the sessions of the PCBS were observed and rated. The participating children were tested pre- and postprogram.
RESULTS:
Positive changes were observed in the participating children in terms of basic safety, realistic understanding and useful knowledge, inappropriate behaviors, physical and psychological symptoms, child-parent and child-child communication, capacity for social and affective reinvestment, actualization of new models of self and the world, self-esteem, awareness and use of tools, cognitive, verbal, written and drawing abilities, cognitive dissonance, ambivalence, antagonism, and isolation.
CONCLUSIONS:
The changes reported in the bereaved children show that the PCBS has some efficacy.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson