Although the literature has provided a large body of evidence about the impact of having a child with Autism Spectrum Disorder (ASD), studies on how this influences typically-developing (TD) siblings are scarcer and less consistent in their findings. Moreover, fewer studies have included TD siblings from non-English speaking countries as informants from a qualitative perspective. Semi-structured interviews were conducted to explore the experiences of adolescents and adults with a sibling with ASD. The sample comprised 14 TD people from Spain aged between 12 and 29, currently living with a sibling with ASD. The thematic analysis revealed that participants identified seven domains of impact, grouped into three different levels: personal, dyadic, and family. The findings of the present study highlight the complexity and heterogeneity of TD sibling experiences and relationships among family members. This study presents topics that are of particular relevance to the Spanish context while identifying commonalities with other studies. These results highlight the importance of cultural factors in some family processes. In addition, results shed light on how TD siblings appraise differential parental treatment and potential protective factors for adjustment, incorporating the relevance of the individual parent-child relationship and certain parenting components as potential protective factors for TD siblings. Such information is important to develop more accurate and effective interventions and adjust the necessary resources to assist TD siblings.
Aim Collaboration between speech and language therapists and parents to help children with language disorders has always been important. The majority of published work is from the perspective of the therapist and what they think and feel parents need to help their children. However, less is known about (1) the processes parents try to access and receive services; (2) how they perceive the journey; and (3) what they think about the service provided to their child. This paper describes an exploration of how parents experience identification and access of services for their children living with language disorders. Subjects and methods Parents from ten countries, with a child who had received services for speech language disorder participated in semi-structured qualitative interviews. Thematic analysis was used to interpret the data. Results Two main themes were constructed: (1) Parental recognition of the need for services; and (2) difficulties accessing services. Parents detailed how they recognised that their children needed services and how they went about securing them. Parents recounted the process they undertook; from their initial concerns about their child’s development, the feelings this engendered, and how they tried to get support and treatment. Parents talked about the factors that made them decide they had to fight to gain access to services for their children. Conclusions Across countries, parents encounter similar experiences. The major obstacles identified by parents lead to the perception of delay in obtaining access to services. Identifying the services that children required was the first hurdle, even before getting a referral to them.
Research has proven that family is the context for the development and well-being of the new generation, and parents need support in order to fulfill children and young people’s physical, cognitive, emotional, and social needs. Most EU policy relating to children and young people is mediated through family even if this is not explicitly named. At a national level, European countries have been encouraged to offer family support initiatives through local authorities that promote positive parenting and guarantee children’s rights. The current challenge in the family support landscape consists of engaging the European level with the local and national structures, in order to support the delivery of quality family support systems and services across Europe. This article reports on the progress in this area by the European Family Support Network (EurofamNet). EurofamNet was created with the purpose of establishing a pan-European family support network to inform family support policies and practices in order to contribute with global actions to face current challenges in family support agenda at European level. This paper introduces the mapping exercise performed by the network to identify key family support actors for research, policy, and practice at the European, local and national level. For this purpose, an expert-targeted approach was followed. Two experts identified 83 key family support actors at the European level, and a panel of 22 experts jointly identified 326 key actors and organizations in 17 European countries. The analysis of this mapping exercise offers an interesting mosaic of family support provision in different European countries that reflect both intra- and inter-network diversity in nature, scope, and sectors of family support actors and organizations. At the same time, this mapping exercise contributes to creating social fabric with the potential to facilitate knowledge mobilization of quality standards to be implemented for the guarantee of quality provision in family support in Europe. Practical implications for the development of the family support and wider services fields of this novel initiative of connecting the efforts of key actors in family support throughout Europe are discussed.
Background: In families of individuals with autism spectrum disorder (ASD), the added difficulties they face may influence their perception of family quality of life (FQoL). It is important to identify factors which foster their perceived wellbeing and are susceptible to intervention. Our aim was to explore the association between mindful attention and FQoL in these families controlling their perceived social support. Method: Ninety-six parents of people with ASD were evaluated using the Mindful Attention and Awareness Scale (MAAS), the Support Questionnaire for Parents with Children with Disability, and the Spanish Family Quality of Life Scale for families with underage members with intellectual and developmental disabilities. Results: Multiple regression analyses revealed that high levels of mindful attention positively predicted FQoL after controlling the influence of social support. Conclusions: Practical implications are discussed in terms of family support interventions. We conclude that mindful attention interventions may be useful for families with children and adolescents with ASD to improve their FQoL.
Grandparents play different roles in families of children and adolescents on the autism spectrum. They are frequently engaged in caregiving tasks with the person on the autism spectrum, providing emotional and instrumental support to the family. However, despite their frequent involvement and the importance of their role in the family, there are few studies that address the experiences of these grandparents, particularly in the Spanish and southern Europe context. This study explores the impact and needs of having a grandchild on the autism spectrum and the resources that grandparents have and use to face the difficulties that arise. A semi-structured interview was carried out with 17 grandparents of children and adolescents on the autism spectrum. We conducted a coding reliability thematic analysis of the impact and used a quantitative content analysis of grandparents’ needs and resources. Results indicated three main aspects related to the impact: personal growth, wanting to help and not being able to, and suffering at three levels: for themselves, their sons and daughters, and grandchildren. Grandparents perceived needs in four contexts: their own needs, the needs of the nuclear family, the needs of the person on the autism spectrum, and the needs of society. The most frequent needs were informational and management of behavioral difficulties. In the resources, the most frequently used strategies were religious beliefs and informal support seeking. It is essential to address the quality of parents-grandparents’ relationships, and include grandparents in intervention programmes, as a way of addressing grandparents’ needs.
A description is made of the quality of Spanish family support programmes, based on their impact, dissemination, scaling up in communities, and sustainability; 57 implemented programmes with informed evidence were selected by EurofamNet. Most of the programmes were shown to make a positive impact, using quantitative methodologies, and they were manualized, while about half of them defined the core contents and included professional training. From a cluster analysis of programmes with scaling up, those with a high and moderate level of systematization were identified, based on the existence of defined core contents, implementation conditions, institutional support, professional training, and reports of findings. The highly systematized programmes were characterized by a greater use of mixed methodologies, their scientific dissemination through different means, and their inclusion in services. A programme quality analysis is proposed, taking an integrated approach that relates the programme’s impact with its design, implementation, and evaluation of sustainability.
Se presenta el Protocolo de investigación del proyecto “Violencia filioparental (VFP) en la adolescencia: detección, perfiles psicosociales y estrategias de actuación” (Plan Estatal 2021-2023). El primer objetivo general del proyecto es estudiar las características psicosociales que contribuyen a la aparición de conductas de VFP en la adolescencia. Se plantea un estudio empírico transversal de metodología mixta y multiinformante en el que colaborarán distintos centros educativos nacionales para la selección aleatorizada de las familias. Con el segundo objetivo se pretende contribuir a la optimización de la práctica profesional en el trabajo con familias en situación de VFP. Se planea la identificación y caracterización de intervenciones familiares que abordan la VFP en España. Se constituirá un panel de expertos/as para el trabajo de mejora de las prácticas profesionales con estas familias. Este proyecto espera que sus conclusiones permitan comprender aún mejor la VFP, así como mejore las políticas de apoyo familiar existentes.
This study primarily examined the predictive role of emotional and behavioral disorders in family cohesion and the moderating role of parenting alliance. Adolescents' mental health issues are a major concern, with important implications for individuals and their families. However, the impact of mental disorders on family processes has been less widely studied. Participants in this study were 72 parents of adolescent beneficiaries of mental health services. Questionnaires assessed family cohesion, parenting alliance, and sociodemographic factors. Results indicated that emotional and behavioral disorders did not have an influence on family cohesion. They also suggested that parenting alliance may be a protective factor for family cohesion. This paper highlights the role of parenting alliance as a potential protective factor in positive family processes. These findings support the importance of focusing on the parental subsystem in therapy, and the need to incorporate a positive parenting perspective when working with these families.
PURPOSE:Although researchers have explored parental perspectives on childhood speech and language disorders, this work has mostly been conducted in English-speaking countries. Little is known about parental experiences across countries. Participation in the COST Action IS1406 'Enhancing children's oral language skills across Europe and beyond' provided an opportunity to conduct cross-cultural qualitative interviews. The aims were to explore how parents construe inclusion and/or exclusion of their child and how parents involve themselves in order to facilitate inclusion.METHOD:Parents from nine countries and with a child who had received services for speech-language disorder participated in semi-structured qualitative interviews. We used thematic analysis to analyze the data.RESULTS:Two overarching themes were identified: 'Language disabilities led to social exclusion' and 'Promoting pathways to social inclusion'. Two subthemes were identified Interpersonal relationships are important and Deliberate proactiveness as stepping stones for social inclusion.CONCLUSIONS:Across countries, parents report that their children's hidden disability causes misunderstandings that can lead to social exclusion and that they are important advocates for their children. It is important that the voices and experiences of parents of children with developmental disabilities are understood and acknowledged. Parents' recommendations about how to support social inclusion need to be addressed at all levels of society.
Being a parent is complicated in typical circumstances, with a great psychological impact as well as feelings and experiences of great intensity. This impact is greater in families in vulnerable situations, such as those with children with mental health problems, receiving treatment in a clinical setting. Due to these challenges, parenting in these circumstances is often accompanied by experiences of stress. An approach that has shown evidence of effectiveness in mitigating the negative impact of stress is mindfulness-based interventions, including the Mindfulness-Based Stress Reduction intervention program. The Mindfulness-Based Stress Reduction intervention program is designed as a psychoeducational, instructional, multimodal, and structured program whose main objective is to provide strategies for the management, coping, and awareness of stress in order to reduce it. In this paper, a protocol for the implementation and evaluation of the original Mindfulness-Based Stress Reduction intervention program with the added positive parenting component is presented, in order to systematize the incorporation of a parenting component in the Mindfulness-Based Stress Reduction intervention program, analyze its effectiveness for parents whose children have mental health problems (in terms of stress, mindfulness, emotional intelligence, general health, and parental role), explore the mechanisms of change operating in this intervention as perceived by the participants, and examine the application of acquired strategies to daily life.
Purpose: Although researchers have explored parental perspectives of childhood speech and language disorders, most studies have been conducted in English-speaking countries. Little is known about parental experiences across countries, where procedures of language screening and services for language disorders differ. The authors participated in the COST Action IS1406 “Enhancing Children’s Oral Language Skills Across Europe and Beyond,” which provided an opportunity to conduct cross-country qualitative interviews with parents. The aim of this pilot study was to explore ways in which parents construed and described speech and language disorders across countries.Method: Semistructured qualitative interviews were conducted with parents from 10 families in 10 different countries. The data were analyzed using thematic analysis.Findings: The overall theme was “acknowledging parental expertise.” The parents described in detail ways how their children’s speech and language (dis)abilities had an impact on the children’s everyday life. Three subthemes were identified: impairment, disability, and changes over time.Conclusions: The findings suggest that, across a range of countries, parents construe contextualized understandings of their children’s speech and language (dis)abilities, along with the everyday functional implications of the disorders. Hence, despite not holding professional knowledge about language disorders, the voices, views, understandings, and personal experiences of parents in relation to their child’s disorder should be listened to when planning therapy services.Supplemental Material S1. Ethical approval. Supplemental Material S2. Interview details.Supplemental Material S3. Examples of visual materials developed in identifying patterns of meanings, themes and sub-themes across the data sets. Jensen de Lopez, K. M., Lyons, R., Novogrodsky, R., Baena, S., Feilberg, J., Harding, S., Kelic, M., Klatte, I. S., Mantel, J. C., Tomazin, M. O., Ulfsdottir, T. S., Zajdo, K., & Rodriguez-Ortiz, I. R. (2021). Exploring parental perspectives of childhood speech and language disorders across 10 countries: A pilot qualitative study. Journal of Speech, Language, and Hearing Research. Advance online publication. https://doi.org/10.1044/2020_JSLHR-20-00415
Purpose Although researchers have explored parental perspectives of childhood speech and language disorders, most studies have been conducted in English-speaking countries. Little is known about parental experiences across countries, where procedures of language screening and services for language disorders differ. The authors participated in the COST 1 Action network IS1406, “Enhancing Children's Oral Language Skills Across Europe and Beyond,” which provided an opportunity to conduct cross-country qualitative interviews with parents. The aim of this pilot study was to explore ways in which parents construed and described speech and language disorders across countries. Method Semistructured qualitative interviews were conducted with parents from 10 families in 10 different countries. The data were analyzed using thematic analysis. Findings The overall theme was “acknowledging parental expertise.” The parents described, in detail, ways in which their children's speech and language (dis)abilities had an impact on the children's everyday life. Three subthemes were identified: impairment, disability, and changes over time. Conclusions The findings suggest that, across a range of countries, parents demonstrated contextualized understandings of their children's speech and language (dis)abilities, along with the everyday functional implications of the disorders. Hence, despite not holding professional knowledge about language disorders, the voices, views, understandings, and personal experiences of parents in relation to their child's disorder should be listened to when planning therapy services. Supplemental Material https://doi.org/10.23641/asha.14109881
A major aspect of contemporary European family policies has been substantial developments in ‘family and parenting support services’ albeit under challenging conditions of austerity in recent years. This article compares and reviews national reforms in family support, child welfare and positive parenting services in England, Ireland and Spain. The analysis critically compares national ‘system-wide’ reforms and frontline service-based innovations; and situates these within broader national and European policy contexts. The article examines the degrees and ways in which children’s and family services reforms across all three countries have been shaped by family support, children’s rights and social investment policy orientations; and deliberates national differences in the scope, timing and longevity of reforms. It raises critical issues from rights-based perspectives and reflects on cross-national insights.
Mental health problems during adolescence constitute a major public health concern today for both families and stakeholders. Accordingly, different family-based interventions have emerged as an effective treatment for adolescents with certain disorders. Specifically, there is evidence of the effectiveness of concrete approaches of systemic family therapy on the symptoms of adolescents and family functioning in general. However, few studies have examined the effectiveness of other relevant approaches, such as structural and strategic family therapy, incorporating parent–child or parental dyadic measurement. The purpose of this study was to test the effectiveness of a structural–strategic family therapy with adolescents involved in mental health services and their families. For this purpose, 41 parents and adolescents who participated in this treatment were interviewed at pre-test and post-test, providing information on adolescent behavior problems, parental sense of competence, parental practices, parenting alliance, and family functioning. Regardless of participants’ gender, adolescents exhibited fewer internalizing and externalizing problems after the treatment. Parents reported higher family cohesion, higher satisfaction and perceived efficacy as a parent, and healthier parental practices (less authoritarian and permissive practices, as well as more authoritative ones). An interaction effect between parenting alliance and gender was found, with more favorable results for the mothers. In conclusion, this paper provides evidence of the usefulness of structural–strategic family therapy for improving family, dyadic, and individual facets in families with adolescents exhibiting mental health problems.