Bibliotek

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.

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.

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.

Disorganized/controlling attachment in preschool has been found to be associated with maternal and child maladjustment, making it of keen interest in the study of psychopathology. Additional work is needed, however, to better understand disorganized/controlling attachment occurring as early as age three. The primary aims of this study were to evaluate risk factors and outcomes associated with disorganized/controlling behavior at age three and to evaluate the risk factors and outcomes differentiating the four subtypes of disorganized/controlling attachment. Analyses were conducted with the first two phases of the NICHD Study of Early Child Care and Youth Development, a prospective study of 1,364 children from birth. At 36 months of age, across the attachment-relevant domains of maternal well-being, mother-child interactions, and child social adaptation, the disorganized/controlling group evidenced the most maladaptive patterns in comparison to both secure and insecure-organized groups. At 54 months of age, the disorganized/controlling group displayed the highest levels of internalizing and externalizing behavior problems, as rated by mothers and teachers, and the lowest quality relationships with teachers. Significant differences found among the disorganized/controlling subtypes indicated that the behaviorally disorganized and controlling-punitive subtypes had more maladaptive patterns across variables than did the controlling-caregiving and controlling-mixed subtypes.

Autism, a chronic condition that develops in early childhood, is characterized by a marked impairment in the ability to relate to others, delayed language, and restricted patterns of behavior. The disorder affects as many as 20 children per 10,000.1
In addition to core symptoms, children with autism frequently have serious behavioral disturbances, such as self-injurious behavior, aggression, and tantrums in response to routine environmental demands.2 These behavioral problems interfere with rehabilitative efforts and pose enormous challenges to parents and educators. Although behavior therapy may reduce aggression and self-injury, it tends to be highly individualized and has not been evaluated in randomized clinical trials.3 Attempts to treat autism with several medications in various chemical classes have had limited success.4 To date, only haloperidol, a potent postsynaptic dopamine-receptor antagonist, has been shown in more than one study to be superior to placebo for the treatment of serious behavioral problems.5,6 However, many clinicians avoid using haloperidol in children because of concern about its short- and long-term side effects.7
Unlike haloperidol, atypical antipsychotic agents block postsynaptic serotonin receptors. The affinity of these agents for serotonin receptors may enhance their efficacy and provide protection against extrapyramidal symptoms.8 Alternatively, atypical antipsychotic agents may be more easily displaced by endogenous dopamine, which reduces the risk of neurologic side effects.9 Given the lower frequency of extrapyramidal symptoms with atypical antipsychotic agents and their reported efficacy for treating both positive and negative symptoms in adults with schizophrenia, there is great interest in the question of whether these agents are beneficial in children with developmental disorders.10 To date, only one placebo-controlled study of risperidone in adults with autism and a handful of open-label studies in children with pervasive developmental disorders have been reported.11-13 We conducted a multisite study to evaluate the efficacy and safety of risperidone in children with autism accompanied by serious behavioral disturbances.
METHODS
Subjects
The first phase of the study was an eight-week, double-blind, randomized, placebo-controlled trial of risperidone (Risperdal, Janssen) conducted by the Autism Network of the Research Units on Pediatric Psychopharmacology between June 1999 and April 2001. At the end of the double-blind phase, children in the placebo group who had had no improvement in their behavior were offered open-label treatment with risperidone, as were children in the risperidone group who met the predetermined criteria for a positive response. Open-label treatment was given for four months, followed by a two-month, placebo-controlled discontinuation phase, as described elsewhere.14 The study sites included the University of California at Los Angeles, Ohio State University, Indiana University, Yale University, and the Kennedy Krieger Institute at Johns Hopkins University. The protocol was approved by the institutional review board at each site, and written informed consent was obtained from a parent or guardian before enrollment. Safety and adherence to the protocol were monitored through weekly conference calls, annual site visits by investigators at the coordinating center (Yale University), and quarterly reviews by the data and safety monitoring board convened by the National Institute of Mental Health.
All children met the criteria for autistic disorder described in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition,15 with tantrums, aggression, self-injurious behavior, or a combination of these problems. Other enrollment criteria included an age of 5 to 17 years, a weight of at least 15 kg, and a mental age of at least 18 months. The children had to be free of serious medical disorders and of other psychiatric disorders requiring medication. We reviewed each child's past and current treatments for autism. In consultation with parents, children receiving a psychotropic drug that was deemed effective for the treatment of aggression, tantrums, or self-injurious behavior were excluded. Ineffective medications were gradually withdrawn, and a drug-free interval of 7 to 28 days, depending on the drug, was required before enrollment. Treatment with an anticonvulsant agent for seizure control was allowed if the dose had been unchanged for at least four weeks and if there had been no seizures for at least six months.
Base-Line Assessment and Outcome Measures
The diagnosis of autistic disorder was corroborated by the Autism Diagnostic Interview — Revised. This semistructured interview was administered by a clinician with special training and systematic review to ensure reliability.16 Screening also included intelligence testing; administration of the Vineland Adaptive Behavior Scales (the population mean [±SD] for each scale is 100±15; higher scores indicate more adaptive behavior)17; routine laboratory tests; electrocardiography; measurement of height, weight, and vital signs; medical history taking; and physical examination. The child's race was reported by the parent or primary caretaker. Clinically significant behavioral problems were defined by a rating of moderate or higher on the Clinical Global Impressions — Severity (CGI-S) scale, as determined by a clinician,18 and by a score of 18 or higher on the Irritability subscale of the Aberrant Behavior Checklist, as rated by the parent (or primary caretaker) and confirmed by a clinician. The 15-item Irritability subscale includes questions about aggression, self-injury, tantrums, agitation, and unstable mood on a scale of 0 to 45, with higher scores indicating greater severity. Data from studies of developmentally disabled children indicate that a score of 18 is 1.3 to 1.5 SD above the population mean, depending on the age and sex of the child.19,20 To exclude children whose symptoms might improve in response to nonspecific clinical contact, the children were reassessed at base line, 7 to 14 days after the initial assessment. Only children who met the inclusion criteria for the CGI-S scale (according to an experienced clinician) and the score on the Irritability subscale (based on the parent's or primary caretaker's rating) at base line as well as at the time of screening were eligible for randomization. The Irritability scores obtained at this second evaluation were used as base-line values.
Each child was seen weekly by two clinicians who were unaware of the treatment assignment: a primary clinician, who reviewed side effects and adjusted the dose of medication, and a clinical evaluator, who assessed the response to treatment. The primary outcome measures were the score at eight weeks on the Irritability subscale of the Aberrant Behavior Checklist, based on the parent's or primary caretaker's rating, and the rating on the Clinical Global Impressions — Improvement (CGI-I) scale, as determined by the clinical evaluator. Children who had at least a 25 percent reduction in the Irritability score and a rating of much improved or very much improved on the CGI-I scale were considered to have a positive response.
Other outcomes were scores on the other subscales of the Aberrant Behavior Checklist (Social Withdrawal, Stereotypy, Hyperactivity, and Inappropriate Speech), based on ratings by the parent or primary caretaker. At base line, the parent or primary caretaker was interviewed to identify the target symptoms and to rate compulsive behavior according to the Children's Yale–Brown Obsessive Compulsive Scale. These semistructured interviews were used in determining the score on the CGI-I scale at subsequent visits, as described in detail elsewhere.21
Medication Schedule
For children who weighed 20 to 45 kg, risperidone was given at an initial dose of 0.5 mg at bedtime and was increased to 0.5 mg twice daily on day 4. The dose was gradually increased in 0.5-mg increments to a maximum of 2.5 mg per day (1.0 mg in the morning and 1.5 mg at bedtime) by day 29. A slightly accelerated dose schedule was used for children who weighed more than 45 kg, with a maximal dose of 1.5 mg in the morning and 2.0 mg at bedtime. For children who weighed less than 20 kg, the initial dose was 0.25 mg per day. Scheduled dose increases could be delayed because of adverse effects or because of marked improvement at a lower dose. Dose reductions to manage side effects were allowed at any time, but there were no dose increases after day 29.
Monitoring for Safety
Laboratory tests, electrocardiographic studies, and physical examination were repeated at eight weeks; weight and vital signs were assessed weekly. At each visit, the primary clinician inquired about health problems, intercurrent illness, and concomitant medications and administered a 32-item questionnaire concerning energy level, muscle stiffness, motor restlessness, bowel and bladder habits, sleep, and appetite. Neurologic side effects were assessed weekly with the use of the Simpson–Angus scale22 and the Abnormal Involuntary Movement Scale.18 Adverse events noted as a result of any of these methods were documented with respect to severity, duration, management, and outcome.
Statistical Analysis
Data were analyzed according to the intention-to-treat principle. Statistical tests were two-tailed. P values of 0.05 or less were considered to indicate statistical significance, except for the analysis of adverse events (P<0.10) and analyses adjusted for multiple comparisons (the Bonferroni method). The biweekly scores on the Irritability subscale were analyzed with the use of mixed-effects linear models in which the study group and site were the fixed effects and the outcome and time were the random effects.23 The mixed-effects approach makes full use of available data and allowed us to combine subject-specific scores on the Irritability subscale in order to estimate the slope of the regression line for each group over time. A strong downward trend in Irritability scores in the risperidone group, as compared with the placebo group, would indicate a statistically significant interaction between treatment and time. Interactions with the site that were not significant were removed from the final model. The parameters of the mixed-effects model were estimated with the use of SAS Proc Mixed software.24
To compare our results with those of other trials and to estimate the likelihood of a response to risperidone in other patients with similar problems, we conducted two additional analyses. First, using our previously stated definition of a treatment response, we compared the rate of positive responses in each study group with the use of the chi-square test. Second, we calculated the size of the effect (the change from base line at eight weeks) for each scale of the Aberrant Behavior Checklist.
Differences in adverse events were tested by the chi-square test or Fisher's exact test when subgroups contained fewer than five children. Continuous variables were assessed with the use of the regression model described above.
RESULTS
Base-Line Characteristics
Of the 270 children who were screened for the study, 112 did not meet the criteria for enrollment, the parents or guardians of 57 children declined participation. The remaining 101 children (82 boys and 19 girls) were enrolled and randomly assigned to receive risperidone (49 children) or placebo (52). We subsequently identified four children who did not meet the entry criteria because their Irritability subscale had fallen below the threshold of 18 at base line. An analysis of the Irritability data that excluded these four children had results that were virtually identical to those with the full sample. Thus, the intention-to-treat analysis included all 101 children.
The children ranged in age from 5 to 17 years (mean [±SD], 8.8±2.7); 87 percent (88 children) were prepubertal; 66 percent (67) were white, 11 percent (11) were black, 7 percent (7) were Hispanic, 8 percent (8) were Asian, and 8 percent (8) were members of other racial or ethnic groups; and 91 percent (92) lived at home with at least one parent. The two groups were similar at base line with respect to a range of demographic, developmental, and clinical characteristics, including mean scores on the Aberrant Behavior Checklist subscales, with the exception of the score on the Inappropriate-Speech subscale, which was higher in the placebo group than in the risperidone group

Primary Outcome
Analysis of the scores on the Irritability subscale revealed a significant interaction between the study group and time (P<0.001) (Figure 1FIGURE 1
Mean Scores for Irritability in the Risperidone and Placebo Groups during the Eight-Week Trial.
). After eight weeks of treatment, the risperidone group had a 56.9 percent decrease in the mean Irritability score (from 26.2±7.9 at base line to 11.3±7.4 at eight weeks), as compared with a 14.1 percent decrease in the placebo group (from 25.5±6.6 to 21.9±9.5, P<0.001) (Table 2TABLE 2
Scores on the Aberrant Behavior Checklist at Base Line and Eight Weeks.
). The rate of a positive response (at least a 25 percent improvement in the score on the Irritability subscale and a rating of much improved or very much improved on the CGI-I scale) was 69 percent in the risperidone group (34 of the 49 children had a positive response) and 12 percent in the placebo group (6 of 52, P<0.001).
These gains in the risperidone group were maintained for six months in 23 of the 34 children (68 percent) who had had positive responses in the double-blind phase of the study. Of the other 11 children who had positive responses with risperidone, 2 did not enter the extension phase of the study because the family moved and 2 because the parents decided to evaluate the children's behavior in the absence of medication. During the extension phase, the parents of two children decided to seek other treatment in addition to risperidone; four children were withdrawn because the treatment was no longer effective, and one child was withdrawn because of an unrelated medical problem.
Secondary Outcomes
Table 2 shows the mean base-line and end-point scores, as well as the effect size, for all the subscales of the Aberrant Behavior Checklist in each study group. After correction for multiple comparisons, there was a significant interaction between the study group and time for scores on the Stereotypy and Hyperactivity subscales, suggesting that risperidone improved behavior in these areas as well. Scores for Social Withdrawal and Inappropriate Speech did not differ significantly between the two groups (after Bonferroni correction).
The rate of improvement over time is shown in Figure 2FIGURE 2
Percentage of Children with a Rating of Much Improved or Very Much Improved on the Clinical Global Impressions — Improvement Scale during the Eight-Week Trial.
. The proportion of children whose behavior was rated as much improved or very much improved on the CGI-I scale differed by 44 percent between the study groups at week 4 (P<0.001) and by 64 percent at week 8 (P<0.001).
Medication Dose
The mean daily dose of risperidone during the final week of the study was 1.8±0.7 mg (range, 0.5 to 3.5). The mean dose of placebo dispensed was equivalent to 2.4±0.6 mg per day (range, 1.0 to 3.5; P<0.001).
Adverse Events
There was a significantly greater mean increase in weight in the risperidone group (2.7±2.9 kg) than in the placebo group (0.8±2.2 kg, P<0.001) (Table 3TABLE 3
Adverse Events Reported during the Eight-Week Trial.
). The weight gain in the risperidone group was associated with a mild increase in appetite (in 49 percent of children) or a moderate increase in appetite (in 24 percent), as reported by the parent or primary caretaker (P=0.03 and P=0.01, respectively, for the comparison with the placebo group).
Sixty different adverse events were recorded during the trial, 29 of which occurred in 5 percent or more of the children (Table 3). There were no serious adverse events in the risperidone group, and no children were withdrawn from the study because of an adverse event. Most adverse events were mild and self-limited. For example, 23 children (47 percent) in the risperidone group had mild fatigue, but only 6 (12 percent) had moderate fatigue. In most cases, the fatigue had subsided by week 6. Similarly, of the 24 children in the risperidone group described as drowsy by their parents or primary caretakers, 16 were considered to be mildly drowsy, and they were no longer drowsy by week 4.
Weekly assessment with the Abnormal Involuntary Movement Scale and the Simpson–Angus scale showed no extrapyramidal symptoms in either group. Parents or caretakers reported five neurologic side effects: tremor, dyskinesia, rigidity, akathisia, and difficulty swallowing. Of these, tremor was significantly more common in the risperidone group (P=0.06). One child in each group had a value for serum glutamic-oxaloacetic transaminase that was more than twice the upper limit of the normal range at eight weeks, and one child in the placebo group had an elevated serum glutamic-pyruvic transaminase level. One child in the placebo group had a nonspecific, clinically insignificant change in cardiac conduction. The pulse, blood pressure, and results of routine laboratory tests did not differ significantly between the two groups. Eighteen children (8 in the risperidone group and 10 in the placebo group) had fever in association with a documented, time-limited illness.
Withdrawal from the Study
Three children in the risperidone group were withdrawn from the study because the treatment was not effective. One child in the placebo group was withdrawn because of a severe headache and a seizure attributed to the failure of a ventriculoatrial shunt. An additional 17 children in the placebo group did not complete the study for the following reasons: withdrawal of consent (1 child), nonadherence (1), loss to follow-up (3), and lack of efficacy (12). The rate of withdrawal was 35 percent (18 of 52 children) in the placebo group, as compared with 6 percent (3 of 49) in the risperidone group (P=0.001).
DISCUSSION
In this trial, risperidone was safe and effective for the short-term treatment of tantrums, aggression, and self-injurious behavior in children with autistic disorder. Improvements were also observed in stereotypic behavior and hyperactivity. Scores on the Social Withdrawal subscale, which rates social isolation and interest in communicating with others, did not differ significantly between the risperidone and placebo groups. Adverse effects such as weight gain, increased appetite, fatigue, drowsiness, dizziness, drooling, tremor, and constipation were more common in the risperidone group. Most of these adverse effects were mild and resolved within a few weeks. Thus, the risk–benefit ratio for risperidone therapy appears to be favorable.
Our findings confirm the results of small, open-label trials of risperidone in children with autism or another pervasive developmental disorder.4 The benefits of risperidone in our study exceeded the improvements observed in a recent controlled study involving 38 adolescents with mental retardation and explosive behavior.25 In our study, there was a difference of 43 percentage points between the risperidone and placebo groups in the change from the base-line score on the Irritability subscale, whereas studies of haloperidol for the treatment of autism showed a difference of 15 to 20 percent between the placebo and active-treatment groups, depending on the measure.5 Our findings with respect to the rate and severity of adverse effects also differ from previous findings. Excessive sedation was reported in 78 percent of children who received haloperidol,6 as compared with generally mild sedation in 59 percent of the children in our study who received risperidone. An acute dystonic reaction occurred in 25 percent of haloperidol-treated patients6 but in none of the children in our trial who received risperidone. Although parents or primary caretakers reported tremor in a few of the children treated with risperidone, weekly neurologic assessments showed no abnormalities. The low risk of extrapyramidal symptoms in our study is consistent with the results of studies in adults.8 Nonetheless, the adverse events observed in our study and the lack of a clear benefit with regard to core symptoms of autism indicate that risperidone should be reserved for treatment of moderate-to-severe behavioral problems associated with autism.
There are several limitations to this study. First, the observation period was only eight weeks long. However, a majority of the children who were classified as having a positive response during the double-blind phase of the study (23 of 34) continued to show benefit at six months. Second, the study included only children with autistic disorder. It is not clear whether our findings can be generalized to children with other forms of pervasive developmental disorder. Third, although the mean doses of risperidone used in this study were not high, the study could not identify the minimal effective dose. Finally, we focused on specific behavioral problems rather than on the core symptoms of autism. Indeed, when designing the study, we were unable to identify a validated measure for the core symptoms of autism that was suitable for repeated administration. Our focus on severe behavioral problems leaves unanswered the question of whether pharmacologic therapy and behavioral treatment could have additive effects.

Samma dag som hon skulle fira sin 50-årsdag fick TV-journalisten Ulla-Carin Lindquist sin diagnos. De problem hon haft med först sin högra hand, sen sitt ben och sen med allt fler muskler berodde på att hon drabbats av amyotrofisk lateralskleros, ALS. Det är den värsta av alla neurologiska sjukdomar. Den saknar bot och leder snabbt till döden. Den här boken är skriven under den korta sjukdomstiden.

Ulla-Carin Lindquist skildrar sina upplevelser ställd ansikte mot ansikte med döden. Men det är också en bok om kärlek och en djup förbundenhet med allt levande.

Som förälder till barn med funktionsnedsättning har man laglig rätt till stöd från samhället. De flesta insatser måste man söka själv och därför är det bra att känna till vilken typ av hjälp man har rätt till.

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.

OBJECTIVE: The Teaching, Raising, And Communicating with Kids (TRACK) program was a longitudinal pilot-trial intervention designed to assist mothers living with HIV (MLHs) to disclose their serostatus to their young children (age 6-12 years). METHOD: MLH and child dyads (N = 80 dyads) were recruited and randomized to intervention or control; the intervention group had 3 individual sessions and 1 follow-up phone call. The sessions focused on preparing MLHs for disclosure through behavioral exercises using Derlega's model (V. J. Derlega, B. A. Winstead, K. Greene, J. Serovich, & W. N. Elwood, 2004) of HIV disclosure. Both MLHs and their child were assessed across multiple time points (baseline, 3, 6, and 9 months) regarding disclosure of HIV status, and specific outcome variables (i.e., relationship context, mother's health, child's mental health, and family outcomes). RESULTS: MLHs in the intervention group were 6 times more likely to disclose their HIV status than those in the control group (OR = 6.33, 95% CI [1.64, 24.45]), with 33% disclosing in the intervention group compared with 7.3% in the control group. MLHs in the intervention group showed increases in disclosure self-efficacy across time, increased communication with their child, and improvement in emotional functioning. Children of MLHs in the intervention group exhibited reductions in depression and anxiety, and increases in happiness. CONCLUSIONS: TRACK was found to be successful in helping MLHs disclose their HIV status to their children, with positive outcomes noted for both MLHs and their children.

Abstract
OBJECTIVE:
The Teaching, Raising, And Communicating with Kids (TRACK) program was a longitudinal pilot-trial intervention designed to assist mothers living with HIV (MLHs) to disclose their serostatus to their young children (age 6-12 years).
METHOD:
MLH and child dyads (N = 80 dyads) were recruited and randomized to intervention or control; the intervention group had 3 individual sessions and 1 follow-up phone call. The sessions focused on preparing MLHs for disclosure through behavioral exercises using Derlega's model (V. J. Derlega, B. A. Winstead, K. Greene, J. Serovich, & W. N. Elwood, 2004) of HIV disclosure. Both MLHs and their child were assessed across multiple time points (baseline, 3, 6, and 9 months) regarding disclosure of HIV status, and specific outcome variables (i.e., relationship context, mother's health, child's mental health, and family outcomes).
RESULTS:
MLHs in the intervention group were 6 times more likely to disclose their HIV status than those in the control group (OR = 6.33, 95% CI [1.64, 24.45]), with 33% disclosing in the intervention group compared with 7.3% in the control group. MLHs in the intervention group showed increases in disclosure self-efficacy across time, increased communication with their child, and improvement in emotional functioning. Children of MLHs in the intervention group exhibited reductions in depression and anxiety, and increases in happiness.
CONCLUSIONS:
TRACK was found to be successful in helping MLHs disclose their HIV status to their children, with positive outcomes noted for both MLHs and their children.

This thesis explores the process of placing a spouse in a care home for older people from the perspectives of the key actors involved. Due to the lack of previous studies in this area in Sweden and the desire to generate new insights that have the potential to inform practice developments a grounded theory methodology was adopted.Data were collected using semi-structured interviews (70 in total) with spouses, adult children, community based staff and staff in care homes. Analyses of these data suggested that placement is best interpreted as a temporal experience comprising four stages: making the decision, making the move, adjusting to the move and reorientation. Each of the key actors offered differing insights into the way that the process as a whole was experienced with it emerging that in the initial two phases the primacy focus was on the practical and instrumental aspects of the move, with the emotional consequences being largely overlooked. This is a key issue as spouses were usually unprepared for the sense of separation and loss that the placement caused. Subsequently, spouses placed particular importance on maintaining their sense of involvement with their partner by a variety of 'keeping' activities. However, children and staff in care homes shared varying degrees of 'awareness' which influenced the way that relationships were forged.Based on a synthesis of the data the core category and basic social process that emerged was termed '(re)-constructing roles and relationships'. This highlights the subtle and dynamic way that placement unfolds and reinforces the importance of understanding the process from multiple perspectives. In addition to providing new theoretical insights the thesis identifies a number of ways in which the placement process could be improved and suggests the need for more open and explicit discussion of a number of aspects, particularly the ways in which expectations of roles and relationships change over time. Thls is essential if spouses are to be better prepared and supported both for the sense of separation from their partner and for the need to integrate into the care home setting.

Detta arbete har syftat till att utveckla och pröva ett instrument för planering, uppföljning och utvärdering av stöd till anhörigvårdare. Arbetet har genomförts i Sverige och England och bygger på tidigare forskning avseende anhörigstöd, brukarmedverkan och partnerskap vid ÄldreVäst Sjuhärad, Högskolan i Borås och Universitetet i Sheffield. Instrumentet benämns COAT (Carers´ Outcome Agreement Tool).

Det färdiga instrumentet består av fyra frågeformulär och baseras på områden identifierade som viktiga av anhöriga som vårdar en närstående. Varje formulär innehåller ett antal påståenden som den anhöriga i diskussion med den som svarar för planeringen får möjlighet att värdera. Till varje område hör en stödplan för planering av åtgärder, uppföljning och utvärdering av den överenskomna hjälpen. En användarguide som vänder sig till de anhöriga och en manual som vänder sig till vård- och omsorgspersonalen har utarbetats.

Omfattande konsultationer i form av fokusgrupper med anhöriga och vård- och omsorgspersonal har använts för att arbeta fram instrumentet. Instrumentet har prövats i tre svenska kommuner, Göteborg, Ulricehamn och Härnösand, av vård- och omsorgspersonal med erfarenhet av anhörigstöd. Efter varje samtal med anhöriga dokumenterades hur instrumentet hade fungerat och hur anhöriga och de själva upplevt samtalet samt förslag på förbättringar. Uppföljande telefonintervjuer genomfördes med de anhöriga och fokusgruppsintervjuer genomfördes med vård- och omsorgspersonalen.

Testarbetet visade att majoriteten av anhörigvårdarna upplevde hembesöket och möjligheten att få tala om sin situation som mycket positivt. De kände sig involverade och lyssnade till. Personalen uppgav att de fick ny kunskap och nya insikter även om det var anhörigvårdare som de känt länge. De synpunkter som framkom har åtgärdats i det instrument som medföljer denna rapport. Anhörigvårdarna och personalen som deltagit i utvecklingsarbetet bedömer nu att instrumentet är färdigt att användas.

Det stora intresse och positiva gensvar som framkommit från alla berörda grupper under projektets gång talar för att det finns en ökande vilja att möta anhörigvårdare där de är och att arbeta tillsammans med dem. Planeringsinstrumentet för anhörigstöd, COAT, kan vara till stor nytta i ett sådant arbete.

COAT-materialet är fritt att använda efter registrering på www.aldrevast.hb.se

Different types of expressive therapies permit bereaved children to express and process their feelings through a variety of child‐friendly non‐verbal methods such as art, creative writing, and music. The selection of a particular method depends on considerations related to the particular needs of each child, the circumstances of the death, and the family/community narrative about it. This article demonstrates how expressive therapies may be used in individual, family, or group sessions which, through play and other modes of expression, provide children with an opportunity to communicate feelings about and reactions to their bereavement experiences in symbolic form.

Play therapy is a highly adaptable treatment method that can be modified according to children's ages, circumstances, and settings in which counseling occurs. Play therapy may be used in schools, community settings, and homes to help children following the death of a significant other. After reviewing basic developmental factors that affect children's ability to comprehend the meaning of death, the article discusses the special circumstances of grief in different situations, including community-based counseling after Hurricane Katrina, school-based group play therapy following a teacher's death, and conjoint parent-child play therapy after a father's death in a terrorist attack. Increasing the acceptability and effectiveness of play therapy, professionals must consider and incorporate family and community traditions and beliefs. Additionally, professionals are encouraged to support teachers and parents in utilizing play-based activities to facilitate children's expressions of grief.

Abstract
BACKGROUND:
Most studies of children's exposure to violence focus on separate, relatively narrow categories of victimization (such as sexual abuse, physical maltreatment, or bullying), paying less attention to exposure to multiple forms of victimization.
PURPOSE:
This study documents children's lifetime exposure to multiple victimization types (i.e., "poly-victimization") and examines the association between poly-victimization and extent of trauma symptomatology.
METHODS:
Analyses were based on telephone interviews conducted between January 2008 and May 2008 with a nationally representative sample of 4053 children aged 2-17 years and their caregivers.
RESULTS:
Exposure to multiple forms of victimization was common. Almost 66% of the sample was exposed to more than one type of victimization, 30% experienced five or more types, and 10% experienced 11 or more different forms of victimization in their lifetimes. Poly-victims comprise a substantial portion of the children who would be identified by screening for an individual victimization type, such as sexual assault or witnessing parental violence. Poly-victimization is more highly related to trauma symptoms than experiencing repeated victimizations of a single type and explains a large part of the associations between individual forms of victimization and symptom levels.
CONCLUSIONS:
Studies focusing on single forms of victimization are likely to underestimate the full burden of victimization that children experience and to incorrectly specify the risk profiles of victims. Research, clinical practice, and intervention strategies are likely to improve with more comprehensive assessments of victimization exposure.

Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N = 206) report high positive evaluation and high burden, adult children (N = 1,093) report low positive evaluation, and other caregivers (N = 386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among 'other' caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15–17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

Objective: The relationships of perceived severity and responsibility attribution for positive and negative symptom behaviors to caregiver burden were investigated. Two types of burden were studied: objective burden (i.e., negative consequences such as physical problems, financial difficulties, and household tension), and subjective burden (i.e., emotional distress about disturbing behaviors). Method: Self-report measures were completed by 70 primary caregivers of persons with schizophrenia. Results: Subjective burden was related to both the severity of positive and negative symptom behaviors, whereas objective burden was related only to the severity of negative symptom behaviors. Responsibility attribution for negative symptom behaviors was related only to objective burden. Caregivers who perceived patients as being less responsible for their negative symptom behaviors reported higher levels of objective burden. The relationship between responsibility attribution for negative symptom behaviors and objective burden remained significant, even after controlling for the severity of negative symptom behaviors. Caregivers' perceptions of patients' responsibility for positive symptom behaviors were not related to objective burden. Conclusions: As expected, perceived severity of negative symptom behaviors was related to objective caregiver burden, whereas severity of positive symptom behaviors was not. These findings suggest that negative symptoms may have a greater impact on role functioning that positive symptoms, leading to greater burden. However, contrary to expectations, less responsibility attribution for negative symptom behaviors was related to higher levels of objective caregiver burden. Caregivers who perceive patients as incapable of altering their negative symptom behaviors and meeting certain role obligations may assume extra responsibilities, leading to higher levels of objective burden. The results indicate that there may be disadvantages for caregivers associated with assuming that patients have no control over their negative symptom behaviors.

This study investigated whether family factors, such as criticism, emotional over-involvement (EOI), warmth, and positive remarks, as measured by the Camberwell Family Interview (CFI), predict symptom change and social outcome for individuals identified as at imminent risk for conversion to psychosis. Twenty-six adolescent patients were administered the Structured Interview for Prodromal Syndromes and the Strauss-Carpenter Outcome Scale at baseline and follow-up assessment approximately three months later. Patients' primary caregivers were administered the CFI at baseline. After controlling for symptom severity at baseline, there were significant associations between caregivers' EOI at baseline and improvement in high-risk youths' negative symptoms and social functioning at follow-up. Similarly, caregivers' positive remarks at baseline were associated with improvement in negative and disorganized symptoms at follow-up, and warmth expressed by caregivers was associated with improved social functioning at follow-up. Although family members' critical comments were not related to patients' symptoms, the majority of critical remarks were focused on patients' negative symptoms and irritability/aggression, which may be important targets for early intervention. These preliminary results provide a first glimpse into the relationship between family factors and symptom development during the prodrome and suggest that positive family involvement predicts decreased symptoms and enhanced social functioning at this early stage. The finding that four-fifths of the youth enrolled in this early intervention clinical research program have shown symptomatic improvement by the three-month assessment point is very encouraging from an early detection/early intervention standpoint.

Känslan av total isolering i en krissituation kan ibland vara lika förödande som själva orsaken till krisen. Den som själv är drabbad eller har varit i samma situation kan bättre förstå hur det känns- det är grundtanken bakom fenomenet självhjälpsgrupper.
Journalisten Charlotte Essén har i sin bok samlat en mängd fakta kring självhjälpsgrupper: varför de behövs, hur de har utvecklats, hur de fungerar etc. Hon har även sammanställt en utförlig lista- den första i sitt slag- över alla de grupper som finns i Sverige idag, sorterade under ämnesrubriker, vilket gör boken till en användbar handbok för den som söker hjälp eller vill starta en ny grupp.

En bok om samtalsmetodik för dig som möter barn och ungdomar i sammanhang där man pratar om viktiga saker i livet. Erfarenheter från arbetet på BRIS är utgångspunkt för boken men innehållet kan generaliseras till samtal inom nästan vilket sammanhang som helst.

Som läsare får man konkreta verktyg, ett förhållningssätt, för samtal med barn och ungdomar. Boken ger också reflektioner och en fördjupad insikt om vad samtal med barn är och gör med oss själva. En röd tråd i boken är hur vi kan omsätta de salutogena begreppen begriplighet, hanterbarhet och meningsfullhet i samtal med barn.

En bok om samtalsmetodik för dig som möter barn och ungdomar i sammanhang där man pratar om viktiga saker i livet. Författaren lyfter fram teman i samtalet som kan hjälpa barn att skapa begriplighet, hanterbarhet och meningsfullhet i sin vardag. Som läsare får du konkreta verktyg för samtalet och ett användbart förhållningssätt. Boken ger också en fördjupad insikt om vad samtal med barn är och gör med oss själva. Innehållet är allmängiltigt och går att använda i alla sammanhang där man möter barn och ungdomar.

Den här boken är skriven för att uppmuntra till flera samtal med barn som har det svårt, och är därför till nytta för alla som arbetar med barn. Genom fler och bättre samtal med barn kommer barnets perspektiv och behov fram. På så sätt kan deras vård och rättigheter förbättras. Boken är värdefull i all relevant yrkesutbildning. Speciellt lämpad är boken för dem som ska möta barn och deras vårdnadshavare i olika beslutssituationer: i hemmet, i skolan, i fosterhem och på institutioner.
Författaren inför ett kommunikationsteoretiskt perspektiv på barns upplevelse, självinsikt och utveckling. Det öppnar för en ny och fördjupad insikt om barnets sociala position i vårdnadsfrågor och för ett samtalsmetodiskt och utvecklingsstödjande sätt att närma sig barnet.
Förutom att författaren bygger upp en teori som generellt kan vara användbar i arbetet med barn, utlöser denna teori konkreta anvisningar om hur vi kan bygga upp kontakt och dialog med barnet utifrån våra egna roller och uppdrag. Boken innehåller rikligt med exempel från olika samtalssituationer med barn.

Rapporten redovisar resultatet av en forskningsstudie om familjestödjande samtal med barn och föräldrar i familjer där mamma och/eller pappa har psykiska problem som föranleder kontakt med vuxenpsykiatrin. Det studerade familjestödet bygger på ett utvecklat samarbete mellan en landstingsdriven vuxenpsykiatrisk mottagning och en familjeenhet inom socialtjänsten i en medelstor kommun i Mellansverige. Den del av familjestödet som har studerats är den serie samtal som erbjuds genom familjeenheten och som genomförs där.

Studiens övergripande syfte var att undersöka hur familjestödjande samtal fungerar och organiseras i samspel mellan barn, föräldrar och professionella. Mer specifikt avsåg studien belysa om och hur barn genom dessa samtal får stöd att prata om föräldrars psykiska problem samt huruvida och på vilket sätt familjestödet kan bistå föräldrarna i deras föräldraskap.

Inom ramen för forskningsstudien samlades data in från 21 familjestödssamtal samt intervjuer med sju föräldrar och fyra barn efter avslutat familjestöd. Dessutom genomfördes sju intervjuer med samtalsledarna som medverkat vid de studerade familjestödssamtalen. Tre familjer följdes genom hela samtalsserien som för dessa familjer omfattade mellan sex och åtta samtal. Samtliga familjestödssamtal spelades in med ljud och bild medan enbart ljud gällde för intervjuerna.

Familjestödssamtalen analyserades med samtalsanalytiska och narrativa metoder. Viktiga teoretiska utgångspunkter var det som brukar kallas institutionella samtal och teorier om socialt samspel i interaktion. Av betydelse var också tidigare forskning om barnsamtal och familje-samtal som kommunikativ praktik och i institutionella kontexter t.ex. familjeterapi, samt internationella och nationella studier om familjestödjande interventioner av typen Beardslees preventiva familjeinterventionoch den finska kortversionen Föra barnen på tal

Att berätta för ditt barn om autism Att berätta för ditt barn om autismdiagnosen kan kännas skrämmande. Är det bra för barnet att veta? Hur berättar man det? Bör man informera andra? Boken Att berätta för ditt barn om autism ger dig råd, tips, exempel och material för att kunna ha bra samtal om ditt barns autism.

Abstract [en]

Longitudinal studies of caregiver burden when caring for persons with dementia living at home are sparse. The aim of the study was to identify factors associated with caregiver burden and predicting increased burden related to caregivers, persons with dementia and formal care. Data were collected through interviews with 1223 caregivers in eight European countries. Bivariate and multivariate regression analyses were performed. Factors associated with caregiver burden included extensive informal care provision, decreased well-being and reduced quality of life for the caregiver and reduced cognition, decreased quality of life, severe neuropsychiatric symptoms and depression in the person with dementia and caregivers' negative experience of quality of care. Factors predicting an increased burden were diminished caregiver well-being, severe neuropsychiatric symptoms of the person with dementia and caregivers' negative perception of quality of care. The knowledge gained in this study may be useful in developing more adequate service systems and interventions to improve dementia care.

PurposeTo investigate a model of language development for nonverbal preschool-age children learning to communicate with augmentative or alternative communication.

MethodNinety-three preschool children with intellectual disabilities were assessed at Time 1, and 82 of these children were assessed 1 year later, at Time 2. The outcome variable was the number of different words the children produced (with speech, sign, or speech-generating devices). Children's intrinsic predictor for language was modeled as a latent variable consisting of cognitive development, comprehension, play, and nonverbal communication complexity. Adult input at school and home, and amount of augmentative or alternative communication instruction, were proposed mediators of vocabulary acquisition.

ResultsA confirmatory factor analysis revealed that measures converged as a coherent construct, and a structural equation model indicated that the intrinsic child predictor construct predicted different words children produced. The amount of input received at home, but not at school, was a significant mediator.

ConclusionsThe hypothesized model accurately reflects a latent construct of Intrinsic Symbolic Factor (ISF). Children who evidenced higher initial levels of ISF and more adult input at home produced more words 1 year later. The findings support the need to assess multiple child variables and suggest interventions directed to the indicators of ISF and input.

Research exhibits a robust relation between child hurricane exposure, parent distress, and child posttraumatic stress disorder (PTSD). This study explored parenting practices that could further explicate this association. Participants were 381 mothers and their children exposed to Hurricane Katrina. It was hypothesized that 3–7 months (T1) and 14–17 months (T2) post-Katrina: (a) hurricane exposure would predict child PTSD symptoms after controlling for history of violence exposure and (b) hurricane exposure would predict parent distress and negative parenting practices, which, in turn, would predict increased child PTSD symptoms. Hypotheses were partially supported. Hurricane exposure directly predicted child PTSD at T1 and indirectly at T2. Additionally, several significant paths emerged from hurricane exposure to parent distress and parenting practices, which were predictive of child PTSD.

Studie med syfte att belysa arbetet vid Mödra- och barnhälsovårdsteamet i Haga, som är en vårdenhet specialiserad på gravida kvinnor och nyblivna föräldrar med missbruksproblem samt deras barn. Intresset riktades mot hur arbetet på mottagningen var upplagt, kännetecken hos patientgruppen samt hur och i vilken mån samverkan med andra verksamheters bedrevs. De huvudsakliga resultaten visade att det i patientgruppen fanns en relativt stor variation med avseende på sådant som boendesituation, civilstånd och sysselsättning. Denna rapport kommer endast att vara tillgänglig som pdf.