Bibliotek

En rapport från NSPH om livsvillkoren för personer med psykisk ohälsa och deras anhöriga och om brukarinflytande

NSPH Har tagit fram den här rapporten för att lyfta två viktiga områden för oss och våra medlemsorganisationer – om livsvillkoren för personer med psykisk ohälsa och deras anhöriga, samt arbetet med brukarinflytande.
För att få en överblick över dessa två områden har NSPH under 2024 genomfört två större undersökningar. Resultaten från undersökningarna presenteras i varsin del i denna rapport. En del med fokus på livsvillkor för personer med psykisk ohälsa och en del med fokus på arbetet med brukarinflytande. Målsättningen med undersökningarna har varit att kartlägga hur det ser ut idag inom dessa två områden och peka på utvecklingsområden framåt.

Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs.

Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337).

Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39).

Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.

Aim: The aim of the study was to qualitatively investigate the adolescents’ need for professional support when a parenthas amyotrophic lateral sclerosis (ALS) – from the adolescents’ and the parents’ perspectives. Methods: A total of 37 indi-vidual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis. Results: Both adolescentsand parents described the adolescents as needing professional support but found it difficult to articulate this need.However, the results indicate that the adolescents needed help in bringing manageability into their lives due to theuncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not for-gotten in the disease context and that their needs for being involved as well as for obtaining information and understand-ing, was addressed. The importance of offering the adolescents support early was emphasized, but also of activelyhelping the families to master challenges in their everyday life. Support adapted to each family’s unique situation andpreferences was desired, as the adolescents’ need for support seemed to be individual, disease-dependent and varied dur-ing different phases. Conclusion: Given the adolescents’ need for information and understanding, healthcare professionalsmust actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given theopportunity to be involved based on their own conditions, as well as to support the families to strengthen theircommunication.

Not only people suffering from severe mental illness (SMI) but also their family members experience stigma. Relatives are met with negative attitudes from healthcare professionals, which adds to the problem. This Swedish study employed a qualitative inductive explorative design in the analysis of written free-text responses from 65 persons who completed a questionnaire for relatives of persons with SMI. The overarching theme, “A vicious circle of hope and despair”, was elaborated by four categories which formed a vicious circle: “Wanting openness, understanding and acknowledgement”; “Facing a lack of understanding from others”; “Seeking understanding from mental healthcare professionals but experiencing the opposite”; and “Keeping family experiences private.” If this vicious circle of family stigma is to be broken, measures are needed for both relatives and health care professionals.

While welfare states and work organisations often provide policies to facilitate a reconciliation of paid work and informal care, the literature pays little attention to employees’ actual capabilities to engage with such policies. In this article, we apply the capabilities approach to interview data from managers and employees in the Netherlands to understand employees’ use or non-use of the policies. We found that job flexibility may help workers reconcile work and care in the short run but that respondents with greater job flexibility reported more health problems than respondents with less flexibility, which calls into question the sustainability of these policies.

Many family carers of older people living with dementia report reduced quality of life, but limited research has investigated what they believe could improve it. Our thematic analysis of in-depth interviews with 23 family carers questions the standardisation of carer support and the appropriateness of the current scope of services, and suggests strengthening carers’ independent right to support. We propose the notion of a ‘care–life balance’, which also draws attention to the different logics inherent in informal and formal care that future service development should seek to reconcile to better support families affected by dementia.

For caregivers of deeply forgetful people: a book that combines new ethics guidelines with an innovative program on how to communicate and connect with people with Alzheimer's.

How do we approach a "deeply forgetful" loved one so as to notice and affirm their continuing self-identity? For three decades, Stephen G. Post has worked around the world encouraging caregivers to become more aware of―and find renewed hope in―surprising expressions of selfhood despite the challenges of cognitive decline.

In this book, Post offers new perspectives on the worth and dignity of people with Alzheimer's and related disorders despite the negative influence of "hypercognitive" values that place an ethically unacceptable emphasis on human dignity as based on linear rationality and strength of memory. This bias, Post argues, is responsible for the abusive exclusion of this population from our shared humanity. With vignettes and narratives, he argues for a deeper dignity grounded in consciousness, emotional presence, creativity, interdependence, music, and a self that is not "gone" but "differently abled." Post covers key practical topics such as:

• understanding the experience of dementia
• noticing subtle expressions of continuing selfhood, including "paradoxical lucidity"
• perspectives on ethical quandaries from diagnosis to terminal care and everything in between, as gleaned from the voices of caregivers
• how to communicate optimally and use language effectively
• the value of art, poetry, symbols, personalized music, and nature in revealing self-identity
• the value of trained "dementia companion" dogs

At a time when medical advances to cure these conditions are still out of reach and the most recent drugs have shown limited effectiveness, Post argues that focusing discussion and resources on the relational dignity of these individuals and the respite needs of their caregivers is vital. Grounding ethics on the equal worth of all conscious human beings, he provides a cautionary perspective on preemptive assisted suicide based on cases that he has witnessed. He affirms vulnerability and interdependence as the core of the human condition and celebrates caregivers as advocates seeking social and economic justice in an American system where they and their loved ones receive only leftover scraps. Racially inclusive and grounded in diversity, Dignity for Deeply Forgetful People also includes a workshop appendix focused on communication and connection, "A Caregiver Resilience Program," by Rev. Dr. Jade C. Angelica.

Background There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse’s experiences working with children who are next of kin. Methods Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ’s checklist. Results The analysis resulted in one main theme: ‘Lack of guidelines and routines among public health nurses working with children who are next of kin’. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. Conclusion The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children’s best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.

Hospital social workers (HSW) play an important role in health care, providing psychosocial support to families affected by severe illness, and having palliative care needs involving dependent children. However, there are few evidence-based family interventions for HSWs to apply when supporting these families. The Family Talk intervention (FTI), a psychosocial family-based intervention, was therefore evaluated in an effectiveness-implementation study. Within the study, HSWs were educated and trained in the use of FTI in clinical practice. This study examined HSWs’ experiences of barriers and facilitating factors during their initial use of FTI in clinical practice. Altogether, 10 semi-structured focus groups were held with HSWs (n = 38) employed in cancer care and specialized palliative home care for adults, pediatric hospital care, and a children’s hospice. Data were analyzed using content analysis. HSWs considered FTI to be a suitable psychosocial intervention for families affected by severe illness with dependent children. However, the way in which the care was organized acted either as a barrier or facilitator to the use of FTI, such as the HSWs’ integration in the team and their possibility to organize their own work. The HSWs’ work environment also impacted the use of FTI, where time and support from managers was seen as a significant facilitating factor, but which varied between the healthcare contexts. In conclusion, HSWs believed that FTI was a suitable family intervention for families involving dependent children where one family member had a severe illness. For successful initial implementation, strategies should be multi-functional, targeting the care organization and the work environment.

Background: Children whose parents have alcohol use problems are at an increased risk of several negative consequences, such as poor school performance, an earlier onset of substance use, and poor mental health. Many would benefit from support programs, but the figures reveal that only a small proportion is reached by existing support. Digital interventions can provide readily accessible support and potentially reach a large number of children. Research on digital interventions aimed at this target group is scarce. We have developed a novel digital therapist-assisted self-management intervention targeting adolescents whose parents had alcohol use problems. This program aims to strengthen coping behaviors, improve mental health, and decrease alcohol consumption in adolescents.

Objective: This study aims to examine the effectiveness of a novel web-based therapist-assisted self-management intervention for adolescents whose parents have alcohol use problems.

Methods: Participants were recruited on the internet from social media and websites containing health-related information about adolescents. Possible participants were screened using the short version of the Children of Alcoholics Screening Test-6. Eligible participants were randomly allocated to either the intervention group (n=101) or the waitlist control group (n=103), and they were unblinded to the condition. The assessments, all self-assessed, consisted of a baseline and 2 follow-ups after 2 and 6 months. The primary outcome was the Coping With Parents Abuse Questionnaire (CPAQ), and secondary outcomes were the Center for Epidemiological Studies Depression Scale, Alcohol Use Disorders Identification Test (AUDIT-C), and Ladder of Life (LoL).

Results: For the primary outcome, CPAQ, a small but inconclusive treatment effect was observed (Cohen d=-0.05 at both follow-up time points). The intervention group scored 38% and 46% lower than the control group on the continuous part of the AUDIT-C at the 2- and 6-month follow-up, respectively. All other between-group comparisons were inconclusive at either follow-up time point. Adherence was low, as only 24% (24/101) of the participants in the intervention group completed the intervention.

Conclusions: The findings were inconclusive for the primary outcome but demonstrate that a digital therapist-assisted self-management intervention may contribute to a reduction in alcohol consumption. These results highlight the potential for digital interventions to reach a vulnerable, hard-to-reach group of adolescents but underscore the need to develop more engaging support interventions to increase adherence.

Aim: To investigate children's experiences of the intervention Me and my Family. Me and my Family is an intervention, for families with parental substance use problems (SUP) provided by Swedish social services outpatient care, includes eight weekly sessions where family members communicate how the SUP affects the family. Method: Data consists of 17 qualitative interviews with children, 7 to 19 years old. The qualitative data were analysed using a thematic approach, initially inductively and then discussed by adding salutogenic perspective. Results: The results are presented in three themes. Regardless of the children's varying ages, the results indicate that participating in the intervention has helped the family break the taboo surrounding parental substance use and enabled the young participants to communicate with their family members differently. The intervention also contributed to stronger bonds between children and their parents.

Parental suicide in childhood increases the risk of mental ill-health, substance use andpremature mortality, particularly through suicide. Postvention supports tailored to thewell-being and functioning of suicide-bereaved children and their remaining parents are thusof critical importance to counteract negative development. This explorative cross-sectionalstudy seeks clinically relevant knowledge by investigating posttraumatic stress (PTS), sense ofcoherence (SOC) and family functioning among children (n = 22), adolescents (n = 18) andparents (n = 40) before their attendance at a family-based grief support program. The resultsdemonstrate critical health outcomes for children and parents, and in particular for adolescents.Clinically relevant symptoms of PTS were found in 36% of children, 65% of adolescents, and37% of parents. All groups showed lower SOC than the norm. Adolescents reporteddysfunctional family functioning for the dimensions Communication and AffectiveResponsiveness. Psychoeducational and trauma-informed support is recommended wherefamily communication and meaning construction of suicide is given special attention

ABSTRACTSocial service provision in Europe has increasingly incorporated informalcarers. Consequently, these carers are now included within the scope ofall social workers, including care managers. Most support for carers isindirect support, where opportunities for respite are channelledthrough the care receiver’s needs assessment. This approach highlightsthe unique role of care managers providing carer support as theybalance their public task directed towards clients with the concurrentpolicy-driven expectation to support carers. The aim of this article is toexplore how care managers, as street-level bureaucrats, ‘make’ carersupport policy on the ground. Using systematic text condensation of 10qualitative interviews with care managers in Sweden, we present threethemes to understand care managers’ experiences. Care managers work‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outsideone’s scope of work, and there are possibilities and practices towards acarer perspective. Following Lipsky’s dictum that street-level bureaucrats’actions effectively ‘become’ the public policy they carry out, our resultshighlight care managers’ possibilities and challenges in shaping whatdirect and indirect carer support looks like on the ground.

Background: Having an infant requiring care in a Neonatal Intensive Care Unit (NICU) is challenging for parents, often the beginning of a journey of stress and worry for parents. Such situations could cause difficulties in problem solving and communication within the family and result in decreased family functioning.
Aim: The overall aim of the thesis was to investigate parents' experiences when their children have needed NICU in the newborn period, and to investigate parents' experiences and effects of a family-centred intervention.
Method: Data was collected through interviews with parents of infants requiring NICU care (I) and six months after the intervention with Family Health Conversations (IV), analysed using thematic analysis (I) and qualitative content analysis (IV). Questionnaire data was collected in conjunction with inclusion (n=147) (II, III), and five (n=113) and eight (n=92) months after inclusion (III). The questionnaire included measures to assess mental health symptoms, bonding, family wellbeing, and family functioning. Quantitative data was analysed with descriptive and inferential statistics (II, III).
Results: The results of study I were presented as two themes: interactions within the family, and interactions between parents and staff. Interpersonal interactions could both facilitate and hinder in the sense of becoming a parent and a family. In study II nearly 40% of the parents reported anxiety symptoms. Mothers reported more mental health issues than non-birthing parents. Depression was associated with bonding difficulties and family wellbeing. In the longitudinally study (III) the intervention trended toward positive effects on mental health, family well-being, and family functioning. However, the estimated effects were not statistically significant. Regardless of the intervention, mental health symptoms decreased over time, whereas family well-being and functioning remained stable. Parents experienced the Family Health Conversations (IV) as an opportunity to co-create a comprehensive picture of what had happened after their child was born.

Föräldrar med intellektuell funktionsnedsättning (IF) kan behöva stöd i sitt föräldraskap för att barnet ska få en bra uppväxt. Socialtjänsten behöver kunskap för att kunna göra välgrundade överväganden och för att kunna ge barn och föräldrar adekvata stödinsatser. Barn riskerar att fara illa om de inte uppmärksammas eller om deras föräldrar får för lite stöd för att kunna utveckla sin föräldraförmåga. Barriskerar också att fara illa om de blir placerade och tappar kontakt med sitt ursprung och nätverk. FN:s konvention om barnets rättigheter anger att samhället behöver ge lämpligt stöd till föräldrar som ansvarar för barnets uppfostran och omvårdnad för att garantera och främja de rättigheter som barnet har. Barnet kan inte ses isolerat från sin familj. Ofta är det dock olika delar av kommunen som utreder och ansvarar för stöd i vardagen till vuxna som har en funktionsnedsättning respektive stöd och skydd för barn. Runt dessa familjer behöver kommunens olika förvaltningar arbeta tillsammans för att en helhetssyn ska vara möjlig. Det gäller både i utredningsförfarandet och vid utformning och utförande av stöd.
Syftet med kunskapsstödet är att öka socialtjänstens kunskap och kompetens för att kunna möta familjerna och tillsammans med dem utforma ett stöd.

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care

Informal carers are an integral part of care provision in Sweden, with approximately one in five people providing regular help to a family member or friend. Indeed, carers provide most of the care for people with health and/or care needs living at home. However, they are also relatively neglected in policy terms, with large variation in the type and extent of support offered across the country. This chapter outlines the carer leave policies available, highlighting that the current policy landscape does not sufficiently address the needs and preferences of working carers. Nevertheless, there is a growing political will to recognise the situation of carers in Sweden, marked by the launch of the first national carers strategy by the previous government in April 2022.

Purpose: We aim to investigate systematic differences in reporting spousal care between caregivers and cared-for persons and their possible effects for the analysis of care regimes and correlation of care with health.

Materials and methods: Using information on care provided/received from the Survey on Health, Ageing and Retirement in Europe (SHARE), we estimate the prevalence of spousal care and discordance between caregivers and cared-for persons in the reporting of care among caregiving dyads. Multinomial regressions are used to estimate systematic differences in reporting spousal care. We then use multivariable logistic regressions to assess the association between discordance in reporting informal care and carer's self-rated health (SRH) and depression using the EURO-D scale.

Results: Only 53.9 % of dyads report care that is confirmed by both spouses. Multinomial regressions show that agreement on care being provided/received is more common when women are caregivers, while men are likely to underreport when providing or receiving personal care. Prevalence of spousal care across care regimes is sensitive to who reports care. There is no effect on the association of care with SRH regardless of who identifies the carer, while the magnitude and statistical significance of the association between depression symptoms and care varies according to the choice of respondent.

Conclusions: Informal care may be understated across Europe when relying solely on carer self-identification through description of tasks in surveys. From a policy standpoint, relying on self-identification of carers to access support or social benefits may potentially reduce the take-up of such benefits or support.

Keywords: Dementia; costs; health-economic evaluation; informal care; resource use.

Amyotrophic Lateral Sclerosis (ALS) presents significant challenges for affected families. The aim for this study was to assess the feasibility of using the Strengths and Difficulties Questionnaire (SDQ) with adolescents and parents with and without ALS. The method involved repeatedly distributing the questionnaire to evaluate its content and structure within this group. The SDQ Prosocial Behaviour subscale and total difficulties score was calculated, along with median values and standard deviations. Parent-adolescent agreement was assessed using intraclass correlations. Data were collected from 11 Swedish families, including 14 adolescents (aged 8–25), 9 parents with ALS, and 8 co-parents. The findings revealed differences between parent and adolescent SDQ scores, emphasizing the need for adolescents’ self-assessments. Their SDQ scores did not indicate significant difficulties, suggesting that most were coping well with everyday life. However, there is significant heterogeneity in the experiences and needs of adolescents. A larger study is needed to confirm its usability

Keywords: Cancer specialist nurse; Colorectal cancer; Family members; Needs assessment; Nursing; Oncology; Qualitative research; Supportive care; Thematic analysis.

Aim: To describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory.

Design: A descriptive qualitative study with a phenomenographic approach.

Method: Individual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist.

Results: The phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support.

Conclusion: Supportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed.

Impact: There is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory.

Implications for the profession and/or patient care: Findings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging.

One older patient out of ten develops an acute confusional state (ACS) during their stay at an emergency care hospital, but there is little knowledge about encountering patients in an ACS. The overall aim of this thesis was to describe the complexity within the encounter between older patients in an ACS and relatives or professional carers, to gain a deeper understanding and increased knowledge about what takes place in the encounter and how this is experienced. The thesis is grounded in a qualitative research approach and a lifeworld perspective. Four empirical studies have been conducted at two geriatric wards at an emergency care hospital. The studies have been examined and approved by the Regional Board of Research Ethics. The aim of study I, II and III was to increase knowledge about how the encounter is experienced in retrospect, by interviewing professional carers (I), relatives (II) and patients who had suffered an ACS (III) about their experiences of encounters during the period of the patient being in an ACS. The fourth study (IV) aimed at increasing knowledge about the encounter from the viewpoint of the patient by focusing on dialogue and actions in the framework of the encounter with professional carers and relatives using a case study. A phenomenological approach was used for gathering and analysing data in studies I and II. In studies III and IV a latent content analysis was used for data analysis.
The results from study I show that professional carers experience the encounter with the patient as an encounter with a person, whose actions and words are unfamiliar and give rise to a lack of immediate trust. The encounter is experienced as unpredictable and the professional carers experience a need to always be on guard and use themselves as tools to reach out to, understand and create contact with the patient in the encounter. Relatives (II) experience the encounter with the patient as encountering a familiar person who has rapidly become unfamiliar, experiencing insecurity in how the patient in turn experiences the encounter and will react to the relative s words and actions. The relatives have to face this new situation with feelings of insecurity and sadness, find themselves exposed and the whole situation laborious. The patients (III) experience the encounter with professional carers and relatives as representing difficulties in connecting with and understanding the other. The patients experience difficulties in understanding what is happening and search for answers within themselves and from others. But the patients also experience a mutual understanding and trust between themselves and the other participants. The patients in the fourth study (IV) rely on professional carers and relatives to understand what is happening and why, to receive help in the encounter and are acknowledged with both understanding and suspicion. In the encounter each tries to convince the other about what is right, which reality is the true one, and there are often misunderstandings in time, place and foci.
The conclusion of the studies (I-IV) is that the professional carers, relatives and patients experience the encounter as something that places them in a vulnerable and arduous situation. In the encounter the feelings of lack of understanding, lack of trust and insecurity are mutual, but there is also a mutual wish to reach out to and understand the other. The character of the encounter changes frequently and rapidly and it is as if it takes place a split second at a time.

Background Affective and reciprocal interactions with others are essential for persons with profound intellectual and multiple disabilities (PIMD), but it is a challenge to assess their quality. This study aimed to investigate the usefulness of instruments from parent-infant research to evaluate these interactions. Method Eighteen videotaped staff-client interactions were coded with the Emotional Availability Scales, the Maternal/Child Behavior Rating Scales, and the Revised Erickson Scales. Results The scales could generally be applied to persons with PIMD and substantial interobserver agreement was found. The tools' subscales appeared to be distinct but there was also evidence that they measure an overarching construct. Client and staff interactive behaviours were highly related. Convergent validity was demonstrated by strong correlations between theoretically related dimensions. An acceptable range in scores, a ceiling-effect, and relative high mean scores occurred. Conclusions The instruments' applicability and usefulness was demonstrated in this study, which offers directions for future research and intervention. © 2011 Blackwell Publishing Ltd.

Background According to new Norwegian laws, mental healthcare for adults are obligated to assess all patients who are parents and to act on their children's needs. This article describes the study protocol of implementing the interventions Family Assessment and Child Talks for children of patients in the adult psychiatry of the University Hospital of Northern Norway. The project is designed to evaluate the process of changes in clinical practice due to the implementation of two interventions. The interventions to be implemented are a standardised Family Assessment Form and the intervention called Child Talks. The family assessment form is an intervention to identify children of mentally ill parents and their needs. The intervention Child Talks is a health-promoting and preventive intervention where the mental health workers talk with the family about the situation of the children and their needs.

Methods/design There are two groups of participants in this study: (1) mental health workers in the clinic (N=220) and (2) patients who are parents (N=200) receiving treatment in the clinic. (1) In the evaluation of clinical practice, the authors use a pre-test, post-test and 1-year follow-up design. At pre-test, the authors evaluate status quo among mental health workers in the clinic regarding knowledge, attitudes, collaborative routines and clinical practice related to families with parental mental illness. After the pre-test is finished, the project move on to implement the interventions Family Assessment Form and Child Talks in the clinic. At post-test and 1-year follow-up, the authors evaluate the impact of implementing the Family Assessment Form in terms of how many children were identified and offered Child Talks in the clinic or referred to other services for additional support. (2) In the evaluation of parents/patients experience with the interventions, the authors use a pre-test post-test design. To identify children of mentally ill patients, the authors collect data on demographical variables for the patient and the child at pre-measures, as well as data on parental competence (PSOC) and parental concerns (PEDS) about their children. At post-measures, the authors evaluate the impact of the intervention in terms of user satisfaction, as well as changes between pre- and post-measures on parental competence (PSOC) and parental concerns (PEDS) about their children.

Discussion The implication of implementing new interventions to safeguard children of mentally ill patients and the limitation of not measuring child development directly are discussed.

This study investigated the effectiveness of a cognitive behavioral group program for spouses of stroke patients. The program consists of 15 bi-monthly 112h sessions. The goal of the intervention is to reduce the prevalence of mental disorders and burnout among care-giving spouses of stroke patients. The sample (stroke patients and their spouses) consisted of one intervention group (n=38 couples) and two different control conditions, those receiving informational support (n=35 couples) and those receiving standard care (n=51 couples). We used the following instruments to measure spouses' mental health and quality of life: Beck Anxiety Inventory (BAI), Beck Depression Inventory (BDI), WHO Quality of Life Questionnaire. Measurements were taken before the intervention (Time 1), directly following the intervention (Time 2) and 6 months after Time 2 (Time 3). Several regression analyses allowed for examination of the short-term and long-term effects of the intervention. The spouses' participation in the intervention program was associated with significant short-term changes in care-giving spouses' quality of life and with long-term changes in their quality of life and depression. The presented multi-component intervention appears to have an immediate effect on care-giving spouses' quality of life. In contrast, the intervention-related changes in more resistant mental-health-related variables did not appear until after a latent stage in the later post-intervention phase.

Detta är en guide för föräldrar om kommunikation och kommunikationshjälpmedel för barn och
ungdomar med flerfunktionsnedsättning, baserad på aktuell forskning och praktik. Eftersom kommunikationshjälpmedel alltid används tillsammans med andra kommunikationssätt, aldrig helt ensamma,handlar boken också om kommunikation i allmänhet. Kunskapsöversikten inleds med en genomgång av vad det innebär att ha en flerfunktionsnedsättning och vad som menas med Alternativ och Kompletterande Kommunikation (AKK). Därefter går författaren igenom de tidiga stegen i kommunikationsutvecklingen och olika sätt att kartlägga kommunikation. Läsaren får bekanta sig med olika kommunikationssätt (manuella tecken, bilder, symbolsystem och konkreta föremål) och olika typer av samtalshjälpmedel och styrsätt. Stor vikt läggs vid pedagogiska råd kring att lära sig använda AKK och boken innehåller många exempel och beskrivningar av olika strategier och hur de kan tillämpas vid användning av olika hjälpmedel. Avslutningsvis finns det referenser och länkar till olika resurser som kan vara till nytta både för föräldrar och yrkesverksamma inom området

Evaluated an experimental preventive intervention developed for children who perceived their parents as problem drinkers. The 8-session program was designed to improve children's coping, self-esteem, and social competence, and modify alcohol expectancies which were specified as mediators of the effects of parental alcohol abuse on child mental health. Participants were 271 self-selected 4th-, 5th-, and 6th-grade students in 13 schools. The children were randomly assigned to treatment or delayed treatment conditions and the program was given to three successive cohorts of students. A meta-analysis across three different cohorts indicated significant program effects to improve knowledge of the program content and the use of support- and emotion-focused coping behaviors for the full sample. A slightly stronger range of effects was found for a high-risk subsample.

One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent's terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent's competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental interventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not adequately capture changes in non-psychopathological but bereaved distressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be insufficient to allow measurement of meaningful differences between interventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the specifically targeted intervention area that differences can be expected to be significant in adequately resourced families.

Background and Purpose— There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service.

Methods— Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services.

Results— There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information.

Conclusions— The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers.

BACKGROUND:
Adolescents' alcohol consumption is a public health concern in Sweden as well as in many other countries. Underage drinking is associated with increased risks of alcohol-related injuries, risky sexual behaviours and dependence later in life. Different strategies have been used in the effort to prevent this behaviour, and to postpone the onset of alcohol. The Strengthening Families Programme 10-14 (SFP 10-14) from the USA has been highlighted as one of the more effective prevention programmes. The aim of the present article was to evaluate the effectiveness of a culturally adapted Swedish version of the SFP 10-14.
METHODS:
This was a cluster randomized controlled trial including 587 sixth-grade students (age 12) and their parents in 19 elementary schools in Stockholm. Schools were randomly assigned to either control (9 schools, 216 students) or to the family skills training intervention (10 schools, 371 students). The SFP Swedish version consisted of two parts with seven and five sessions, respectively, held separately for youths and parents except two joint family sessions. Measures of students' self-reported episodes of drunkenness, smoking, illicit drug use and other norm-breaking behaviours were collected at baseline (March 2003) and at three subsequent yearly surveys. Data were analysed using multilevel models with an intention-to-treat approach.
RESULTS:
No preventive effects were found for smoking, alcohol and illicit drug use and other norm-breaking behaviours, nor did moderators affect the outcome.
CONCLUSION:
The Swedish version of the SFP 10-14 was not effective in preventing youths' substance use in a Swedish context.