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. 2025 Oct 20;38(5):e70136. doi: 10.1111/jar.70136

Adapted Support to Families Headed by Parents With Intellectual Disability Through Support to Practitioners: SUF Resource Centre and Examples From Uppsala, Sweden

Tommie Forslund 1,2,✉, Sandra Melander 1, Lydia Springer 1, Laila Dahlström Stolpe 1, Karin Jöreskog 1
PMCID: PMC12536331

ABSTRACT

Background

Parents with intellectual disability and their children are entitled to adapted support, but practitioners lack knowledge, have scarce access to adapted methods, and work in siloed organisations with limited resources. SUF resource centre was therefore formed, in Region Uppsala, Sweden, to support families headed by parents with intellectual disability through support to the practitioners who support the families.

Method

SUF has now existed for 20 years and, in this brief report, we describe SUF's organisation and methods: knowledge dissemination, consultations, development and implementation of adapted methods, research, and support of inter‐agency cooperation.

Results

We describe selected results, including research, development projects, and an external review of SUFs' work.

Conclusions

We reflect on factors that have been important in developing and maintaining adapted support. We emphasise working together with practitioners—grounded in their needs, opportunities and constraints—and to simultaneously address both parents' and children's rights and needs.

Keywords: child development, intellectual disability, parenting, rights, support

Summary.

  • Parents with intellectual disability are entitled to adapted parenting support. Unfortunately, the practitioners who provide support often lack knowledge about parents with intellectual disability, and lack access to suitable methods of support adapted to the parents' cognitive needs. Different agencies that provide support also have difficulties cooperating and coordinating support.

  • SUF resource centre was therefore formed, in Uppsala, Sweden, to support practitioners in providing suitable, adapted support to parents with intellectual disability and their children. SUF does this through increasing practitioners' knowledge, helping them develop adapted methods of support, and helping agencies cooperate and coordinate support.

  • SUF has now existed for 20 years, and we describe our work, to inspire others who seek long‐term solutions to improve support to parents with intellectual disability and their children.

  • We believe that it is important to work together with the practitioners who support parents, based on what they need to support parents in a better way. We also describe research on adapted methods, which have been appreciated by both parents with intellectual disability and by practitioners. We also describe different projects to improve cooperation between agencies that support parents with intellectual disability and their children.

1. Introduction

Parents with intellectual disability and their children have rights, as defined by the United Nations (1989, 2006). This includes adapted parenting support for family maintenance. Sweden also has a national strategy for strengthened parenting support that emphasises that all parents are entitled to support adapted to their needs, to be able to support their children's best interests (Ministry of Health and Social Affairs [Socialdepartementet] 2008, 2018). It is consequently a societal responsibility to provide adapted parenting support, and family perspectives are crucial, rather than pitting parents' and children's needs against one another.

Families headed by parents with intellectual disability, like other families, have both strengths and vulnerabilities and, while some families struggle, others thrive (Collings and Llewellyn 2012). Yet, intellectual disability can present challenges, perhaps particularly in societies that place high demands on cognitive functioning while being insufficiently adapted to neurodiverse parents (Forslund, Fernqvist, et al. 2022). Families headed by parents with intellectual disability are also, on the group level, at increased risk: the parents for insufficient knowledge about parenting, and for difficulties with child care and parent–child interactions (Feldman 1994; Hodes et al. 2018; Lindberg et al. 2017); their children for suboptimal developmental outcomes (Forslund, Lindberg, et al. 2022; Granqvist et al. 2014; Wickström et al. 2017); and the families for child out‐of‐home placements (LaLiberte et al. 2017; McConnell et al. 2021). The families are also overrepresented in receiving professional support from the social services and other agencies (Wade et al. 2008). At the same time, concerns are recurrently raised that parents with intellectual disability are not given enough support, and that available support is insufficiently adapted, which may contribute to undue pessimism about the parents' prospects and negative stereotypes (Booth et al. 2005; Pacheco et al. 2022; Stefánsdóttir et al. 2024).

Parenting difficulties—when present—cannot be simplistically attributed to the parents' cognitive functioning per se. The families are, for instance, markedly overexposed to poverty, stigmatisation, and limited social support (Fernqvist 2015; McConnell and Phelan 2022). Moreover, the parents are overexposed to adverse childhood experiences, a lack of positive role models for parenting, traumatisation, and physical and mental health problems (Hammarlund et al. 2023; McGaw et al. 2010). Finally, the children have an increased, heritable likelihood for neurodiversity, which tends to require adaptations and increase caregiving‐related demands and parenting stress (Aunos et al. 2008; Meppelder et al. 2015). Such findings do not only corroborate contextual models of parenting (Feldman and Aunos 2020; Schuengel et al. 2017): they also emphasise the need to avoid essentialising tendencies, to provide proactive and holistic support, and to build on parental strengths and contextual factors that convey resiliency (Llewellyn et al. 2003; Tarleton and Ward 2007).

The families often need support from different agencies, and support must hence be coordinated. Yet, pertinent practitioners face various challenges, including high workloads and pressure to stay up‐to‐date in multiple areas. Their generalist training also means that they rarely acquire specialist knowledge about families headed by parents with intellectual disabilities (Van Nieuwenhuijzen et al. 2025; Tarleton and Turney 2020). There is also scarce access to adapted, evidence‐based methods of support for parents with intellectual disability and their children. Indeed, a recent evaluation of Sweden's national strategy for strengthened parenting support highlighted the need for better support for families headed by parents with intellectual and developmental disabilities (Family Law and Parental Support Authority 2023). Pertinent agencies also tend to be siloed and have limited time and resources, contributing to under‐developed inter‐agency cooperation (MacIntyre et al. 2019). Developing and maintaining adapted support for families headed by parents with intellectual disability is consequently difficult, and promising initiatives in various countries have seen withdrawn funding and been cancelled (Spencer et al. 2024).

1.1. SUF Resource Centre and the Aim of the Current Brief Report

SUF resource centre began as a development project in 2005, in Region Uppsala, Sweden, with external funding, to map and meet practitioners' needs concerning adapted support to families headed by parents with intellectual disability. The project was successful, and SUF was made permanent through a collaboration agreement between Region Uppsala and its eight municipalities. Translated to English, the Swedish acronym SUF stands for Cooperation, Development, Parenting. While originally focused on support to parents with intellectual disability, the resource centre has come to focus more broadly on support to neurodiverse parents, including autistic parents and parents with ADHD. A key reason for this is that adapted support to parents with intellectual disability was soon perceived as beneficial for a wider group of parents. SUF supports the practitioners who, in turn, support families in need of adapted support, whether or not the parents have a diagnosis.

SUFs work has continuously been perceived as valuable for providing effective support to the families, and SUF has now existed for 20 years. The aim of the present report is, therefore, to describe SUFs organisation and methods. While we realise that there are differences between countries, and that SUF also has limitations, we hope that our approach may inspire others who seek a long‐term approach to the development and maintenance of support to families headed by parents with intellectual disability.

After a description of SUFs organisation and methods, we present results from research associated with the implementation of adapted methods, and results from selected development projects. Finally, we present results from a recent external review of SUFs work, associated with the most recent renewal of the collaboration agreement between Region Uppsala and its municipalities that underpins SUFs work. Finally, we discuss some factors that we believe have been important in order to maintain adapted support over time.

2. SUF Resource Centre's Organisation and Methods

In the following, we describe SUFs organisation and methods, including knowledge dissemination, consultations, and development and implementation of adapted methods of support.

2.1. Organisational Structure

SUF resource centre is financed by the Region's eight municipalities, who each contribute through a small sum per inhabitant, and by the Region. The continuous work depends on multiple cogwheels working together. SUF has five employees, with different roles: a head of operations, a psychologist specialised in clinical psychology, a method developer with a background in social work, an information officer, and a researcher.

All municipalities also have local SUF‐groups, based on their respective conditions, with practitioners from different agencies, with different professional backgrounds, who meet and work with the parents and their children. Examples include, but are not limited to, social services, habilitation, psychiatry, maternal and child health care, and (pre)school. These practitioners meet regularly, together with a representative from SUF, and keep an eye on their respective organisations' needs concerning knowledge, adapted methods, and inter‐agency cooperation. The employees at SUF then support the local SUF‐groups and their agencies, grounded in their current needs, and with consideration for the agencies' resources and constrains. SUF presents ideas, and potential solutions to perceived needs, and support development projects, based on in‐depth knowledge about the families and about adapted support. SUF also supports constructive initiatives that originate in the local SUF‐groups, which include experienced practitioners with a keen interest in support to neurodiverse parents and their children. This structure means that there tends to be different projects and processes in the different municipalities. At the same time, certain projects are of interest to multiple municipalities, and successful approaches and methods are often disseminated between the municipalities. The structure and stability mean that SUF and the local SUF groups can work together on development projects and inter‐agency cooperation long‐term.

SUF also has a regional management team, with representatives from Region Uppsala, the municipalities, and Sweden's largest interest organisation for people with intellectual disabilities. The management team meets regularly with SUF to provide a creative arena and to ensure joint responsibility for the development of knowledge, adapted support, and inter‐agency cooperation.

Last but not least, SUF also has a network of parents with lived experience to ensure that perspectives from the parents inform SUF's work. The parents discuss needs concerning adapted support, hold presentations, and co‐present with employees from SUF to disseminate knowledge. The parents are also consulted on new projects and materials to ensure that important perspectives are not missed and to gauge acceptability and accessibility.

2.2. Dissemination of Knowledge, Resources, and Material

Dissemination of knowledge and resources is continuously done in multiple ways. For instance, SUF holds lectures about important and timely matters. Often, these lectures are based on the separate municipalities' needs and wishes, but SUF also organises lectures and seminars to which all practitioners in the Region are invited. Introductory lectures are also held for new employees. When time permits, SUF also accepts invited presentations for agencies in other regions. SUF also organises a practically oriented, yearly national conference, with presentations by neurodiverse parents and their children, practitioners, researchers, and governmental agencies. SUF also organises a Nordic researcher‐practitioner network, as an arena for exchanging thoughts and ideas, and for initiating collaborations. SUF also has a web page that is continually updated. The webpage includes research‐based knowledge about families headed by neurodiverse parents, and information about adapted methods for support. The webpage also includes various types of materials and resources that can be freely downloaded and used for parenting support, to facilitate meetings, and to support good care (e.g., during pregnancy and child birth). The webpage had more than 20,000 visits in 2024, and the number of visits has increased steadily every year.

Employees at SUF also hold consultations, so that practitioners can ask questions about (anonymised) families they work with and receive guidance in how to understand challenges and best support them, building on the parents' strengths. During 2024, SUF had 92 consultations, with 181 practitioners. SUF is also consulted by other regions for help with increasing practitioners' knowledge, for implementing adapted methods, and for developing inter‐agency cooperation. Governmental agencies also consult SUF recurrently, for instance regarding the development of guidelines and knowledge supports to practitioners. Currently, SUF is supporting a governmental agency that examines if neurodiverse parents want support in particular parenting domains, their experiences of parenting support, and whether certain types of support should be developed and improved. The goal is to inform work related to Sweden's national strategy for strengthened parenting support, to improve the availability of adapted support to neurodiverse parents. SUF has supported the development of a questionnaire to parents and the recruitment of respondents.

2.3. Development and Implementation of Adapted Methods for Support

Development and implementation of adapted methods include methods for making informed decisions about future parenting, preparation for parenting during pregnancy, assessment of support needs, home‐based parenting support, and support to parents whose children are placed in out‐of‐home care. SUF is indebted to researchers from around the world, and to IASSIDD's special interest research group (SIRG) on parents and parenting with intellectual disability, since the methods have typically been developed in other countries before implementation in Sweden. One such example is “Children, do I know what it means?” from the Toolkit (ASVZ 2022), developed in the Netherlands. The aim of this pedagogical material is to increase knowledge about parenting and different domains relevant to parenting (skills, time, relationships, costs, housing), through conversations with a professional. The material can be used either with individual adults or with couples. The material can also be used both with adults who are considering parenthood and with parents who are expecting a child and want to prepare. Another example pertains to Real Care Baby simulators (RCB: Janeslätt, Larsson, et al. 2019). The aim of the simulators is to provide experience of what it is like to continuously tend to a baby's needs for a few days. Yet another example is Parenting Young Children (Mildon et al. 2008), a home‐based parenting support program developed in Australia, inspired by Feldman's Step‐by‐Step and research that emphasises the importance of family‐centred support. PYC's aim is to support the development of parenting skills through concrete practice, modelling, and coaching, supplemented by cognitive aids (Feldman 1994). A final example is Parents on the outside (Mayes et al. 2011), developed in Australia. Parents on the outside is a group‐based intervention for parents whose children have been placed in out‐of‐home care, to support the parents in processing the crisis that child out‐of‐home placements tend to entail and, if the children remain in family home care, how to remain a parent “on the outside”. The implementation of these methods in Sweden has been done in collaboration with the originators and has included cultural adjustments. Work with implementation and maintenance of the methods includes recurrent organisation of training institutes to train new practitioners and continuous method support to the practitioners who have already been trained.

SUF also initiates, contributes to and supports research concerning families headed by parents with intellectual disability and their children. This research is practically oriented, and tends to concern the families' perspectives, needs and wishes, and adapted methods for support. SUF is the main applicant for funding in smaller projects, a co‐applicant in larger projects, and an external collaborator or consultant in yet other projects. As a regional resource centre, SUF can apply for regional grants, and for funding from smaller foundations that support research about parents with intellectual disability. However, large, multi‐year research grants from major research funders in Sweden are typically directed towards the universities. For large projects, SUF therefore collaborates with researchers who have similar interests, and who can be the main applicants. To facilitate collaborations and applications, SUF tries to make sure that its researcher also has a part‐time position at a university. Still, SUF only has one researcher, and research is one of several aspects of SUFs work. Hence, SUF also tries to inspire others to conduct relevant research, and supports their research, for instance through advice and input on study designs, and through support in recruiting participants. Consequently, SUF is an external collaborator or consultant in some projects. Ultimately, we believe that this helps our ability to disseminate up‐to‐date knowledge and adapted methods of support, and to provide high‐quality consultations, to the benefit of families headed by parents with intellectual disability.

3. Selected Results of SUF Resource Centre's Work

The work described above, including continuous dissemination of knowledge, material and resources, consultations, and implementation of adapted methods, represents results of SUF's body of work in itself. For instance, during 2024, SUF had 419 different activities, including presentations, consultations, training institutes, and method support, for 6395 practitioners within and outside of Region Uppsala. In the following, we present selected results from development‐ and research projects, and a summary of an external review of SUF's work that was recently conducted.

3.1. Empirical Research on Adapted Methods for Support

The Toolkit and RCB simulators were examined together in studies with adolescent students in special education. The research was initiated by SUF and done in collaboration with researchers at universities. Interview‐based studies with students found that the Toolkit was perceived as providing important knowledge, that the RCB provided useful experience, and that the combination of the two methods was appreciated (Janeslätt, Jöreskog, et al. 2019; Randell et al. 2021). A subsequent RCT study also found that the methods decreased uncertainty about future parenting, suggesting an improved ability to make informed decisions about future parenthood (Höglund et al. 2023). Further, an interview‐based study with teachers found that they also perceived the methods as helpful (Randell et al. 2023). Yet, the teachers also emphasised the importance of supportive principals, colleagues, and parents.

PYC was first examined in a project associated with the parenting support program's implementation in Sweden. SUF was a key part of the group that brought PYC to Sweden, and supported the realisation of the research project (recruitment, data collection). Interview‐based studies with practitioners found that PYC was perceived as providing increased skills and tools to work more effectively with parents with cognitive challenges (Mc Hugh and Starke 2015; Starke et al. 2013). SUF is currently supporting a new five‐year, mixed‐methods project. The project uses quantitative measures to examine the development of parenting skills from before to after PYC, and at a six‐month follow‐up, together with interviews with both parents and children (Holmefur et al. 2025). SUF initiated the research, constructed the research group, and contributed to the work on the funding application. SUF is part of the extended project group and supports the realisation of the project, for instance through input at various stages of the project and through support in recruiting participants.

Parents on the outside was examined through interview‐based studies with parents who took part in separate groups for mothers and fathers whose children had been placed in out‐of‐home care. Before the intervention, the mothers felt frustrated, dependent on a system they did not understand, and struggled with the social services (Janeslätt, Jöreskog, et al. 2019). The fathers also felt frustrated with the system, but also conveyed a degree of acceptance, grounded in an appreciation of what they regarded as an improved situation for their children (Adolfsson et al. 2025). After participating in parents on the outside, the mothers' responses suggested reconciliation, fewer feelings of guilt, and increased self‐confidence (Adolfsson et al. 2021). Their responses also suggested increased inclusion in their children's lives, potentially mediated by improved cooperation with the social services and the family homes. The mothers also expressed strong appreciation for the solidarity with the other mothers in the group, being able to both receive and give advice. Finally, a multiple case study that explored longitudinal changes corroborated these findings and emphasised that the mothers seemed to reclaim a stronger mothering role (Melander et al. 2025). SUF initiated the research on parents on the outside and conducted it in collaboration with researchers at universities.

Beyond research on particular methods for adapted support, a further example, concerning parents' perceptions, includes a study that SUF conducted on how parents with intellectual disability experienced the Covid‐19 pandemic, with a focus on support needs (Forslund, Fernqvist, et al. 2022). Moreover, SUF has initiated and is conducting an interview‐based study concerning fathers with intellectual disability, focusing on their perceptions of their parenting role, factors that they feel are influencing their ability to be the parent they want to be, their experiences of parenting support, and whether they want certain types of support.

3.2. Development Projects Concerning Adapted Support and Inter‐Agency Cooperation

SUF continually supports regional and municipal development projects, focused on adapted support and inter‐agency cooperation. In the following, we describe some recent projects. In all instances, SUF has been a continuous collaborator and has supported the pertinent agencies, through knowledge about the families, about adapted support, and about inter‐agency cooperation. The continuous work has typically involved recurrent meetings and discussions with the pertinent agencies to develop and refine the new approaches to providing support, based on key knowledge, and through support in grounding the approaches on relevant organisational levels, for approval and support by key stakeholders.

A recent project had the aim of increasing the cooperation between maternal health care and the social services concerning pregnant neurodiverse mothers. Previously, when there were concerns about future parenting, it was common to wait until the child was born to involve the social services. This often resulted in lengthy (6–8 weeks) stays in unfamiliar assessment and treatment units, with high levels of stress and constantly feeling scrutinised and having to prove oneself. In this inter‐agency cooperation, maternal health care involves the social services already during pregnancy. Practitioners introduce themselves, build trust, and, if the parents accept continued contact, assess strengths and potential support needs. If support is needed, the social services begin providing support before the child is born. The practitioners work intensely with the families in the beginning after the child is born, through home‐based and proactive parenting support (e.g., PYC), to minimise the risk of a crisis, and gradually decrease the amount of support. While not yet evaluated scientifically, internal evaluations suggest that both practitioners and parents perceive the approach as beneficial.

Another recent project involves cooperation between a preschool, the social services, and SUF. The preschool recurrently felt frustration with families headed by neurodiverse parents, who had difficulties with scheduling, packing for the child, and being on time. SUF increased the staff's knowledge about neurodiversity, and the principal worked on adapted written information from the school and ensured that all children received the same new backpacks with laminated cognitive aids that clarified what should be packed (universal design). The social services also supported the families who needed it, for instance with scheduling and the use of the school's digital tools and logins. While not scientifically evaluated, the teachers felt that the approach reduced frustration and facilitated cooperation with the families. SUF is currently supporting the dissemination of the approach to additional municipalities that have shown an interest in developing similar approaches.

Another development project pertains to (bi)weekly café‐meetings for neurodiverse parents and their children. Experienced staff is always present, and the practitioners in the municipality motivate parents whom they believe would benefit from the café‐meetings to attend with their children. The families eat together, and the children meet other children and have lots of toys to play with. The parents also get to meet other neurodiverse parents, and can ask the staff and each other questions about parenting and child development, and give and receive advice. The approach hence enables the practitioners to work proactively to strengthen the parents and increase the families' coping resources. The café‐meetings also form the basis for recurrent groups for parents and children, respectively. These groups have certain themes focused on strengthening parenting, parent–child relationships, and child development. However, new themes can also be included, based on what each specific group wants and needs. For instance, meetings can be tailored to give guidance concerning contextual factors such as economic matters, inter‐parental cooperation, and mental health issues, and where the families can turn for additional support. Internal evaluations suggest that the approach helps families break social isolation, develop friendships, and increase social support. The evaluations also suggest that it helps the parents build trust in governmental agencies and professionals and that it increases the likelihood of—when needed—seeking and accepting parenting support. An external evaluation where children were interviewed also found that the children appreciated the children's groups and that it benefited their wellbeing (Jöreskog 2009). This approach was initially developed primarily by one of the municipalities in Region Uppsala, in continuous contact with SUF. Currently, SUF supports dissemination of the support model to additional municipalities in the region.

A final example pertains to a new approach to housing support. Some Swedish municipalities have developed and implemented an approach called ‘Family‐oriented housing support’, as an extension to regular housing support provided under the Social Services Act. Regular housing support offers practical and social assistance in daily life, but does not tend to include parenting support. Family‐oriented housing support therefore provides practical and educational support tailored to both the individual's and the family's needs. This includes compensatory support for parenting difficulties, and cognitive aids, adjustments, and strategies to support cognitive functioning and strengthen parenting capacity. Municipal evaluations indicate that the approach has benefits and facilitates parenting support by the social services for those who need long‐term support. SUF currently supports the implementation of the approach in Region Uppsala and has formed a national network around the approach to stimulate knowledge exchange and support implementation.

3.3. External Review of SUFs Work

The external review of SUFs' work was done by an external agency, through interviews with practitioners and analyses of different types of data, including annual reports and other documentation. The review predominantly identified strengths. SUFs was perceived as offering relevant and practically useful support, based on the practitioners' actual needs. The parent network and the perspectives that the parents added were also perceived as a notable strength. Moreover, the organisational structure was perceived as a strength, since it was perceived as facilitating inter‐agency cooperation. Finally, the evidence‐based work with research on the adapted methods that are being implemented was seen as a strength.

4. Discussion

We conclude that SUFs structure and methods have contributed to the development and dissemination of knowledge and adapted methods of support to families headed by parents with intellectual disability in Region Uppsala and its municipalities. The 20 years of work also offers opportunities to reflect on factors that are important to consider in order to disseminate knowledge, develop and implement adapted methods for support, and support inter‐agency cooperation over time. In so doing, and while being mindful of limitations and vulnerabilities, we hope to inspire others who seek long‐term solutions to the development and maintenance of support to families headed by parents with intellectual disability.

When SUF began, it was not uncommon to see parents' and children's rights pitted against one another, sometimes with heated discussions inflated by scarce knowledge and unrepresentative cases that received attention in the media. This has changed over time, and family perspectives are now much more common. Still, it has likely helped that SUF has continually emphasised the rights of both the parents and the children, and that SUF's work and the adapted methods of support are meant to benefit both the parents and the children. Of course, children's and parents' rights tend to align, and support to children typically goes through effective, adapted, and accessible support to their parents.

The organisational structure has likely been beneficial as well, as suggested by the recent review. As described, SUF largely works bottom‐up, together with the practitioners and their agencies, based on their needs, and with consideration for their organisational realities. This has likely ensured that suggested solutions, development projects, and adapted methods of support have been relevant and feasible to implement. Of course, being in continuous contact with the practitioners and agencies, and providing relevant support, has likely contributed to increased trust over time and being able to introduce new perspectives and open doors. The organisational structure, which includes a management group, local SUF groups, and SUF, has also likely contributed to buy‐in on multiple levels, and mandates for practitioners to invest time and resources in development projects. Further, the parent network and SUF's contacts with interest organisations have also been important and contributed to an increased sense of legitimacy and facilitated contacts with governmental agencies. The parent network has been paramount. For instance, practitioners recurrently emphasise the value and power of the presentations that the parents hold.

Finally, focusing on adapted support to both parents with intellectual disability and other groups of neurodiverse parents (e.g., parents with ADHD, autistic parents) has likely been beneficial. While parents with intellectual disability, including marginal intellectual disability, are a large group and at the heart of SUFs work, being able to provide support to other groups of neurodiverse parents has likely increased SUFs outreach and relevance.

4.1. Limitations and a Look Ahead

SUFs organisation and work certainly has limitations and vulnerabilities. One thing that was emphasised in the recent external review is a need to balance SUFs role nationally. Specifically, SUF is financed by Region Uppsala and its municipalities, and regional work is hence always front and centre. At the same time, SUF is increasingly asked for help by other regions and governmental agencies. While SUF charges modestly for work outside of Region Uppsala, every assignment takes time, and SUF only has five employees. A related question that we are sometimes asked is whether SUF should transform into a national resource centre. Alas, we believe that would be unfeasible, as it would be much more difficult to work closely with the practitioners in Region Uppsala in a bottom‐up manner. A couple of other regions are, however, developing centres similar to SUF, and perhaps, if a sufficient number of regions do so, a future development may see a national resource centre supporting the regional ones.

Another limitation pertains to resources and staff turnover. It is essential for SUFs' work that the local SUF groups have sufficient time and resources for development projects. With fluctuations in the municipalities' and Region Uppsala's economy, and changes of managers, the local SUF groups' mandate and opportunities can fluctuate over time. When key members of the local SUF groups switch jobs or retire, it can also have a negative impact, necessitating transfer of tacit knowledge and introducing new members. Relatedly, implementing and maintaining adapted methods of support requires resources. As discussed above, this work necessitates recurrent training institutes and method support. Naturally, the more methods that are implemented, the more resources are needed to maintain their use. At the same time, SUF must have a sufficient capacity to discover, develop, and implement new methods. Finally, looking ahead, it may be good to extend the current knowledge base about the adapted methods. Specifically, most research to date has been qualitative, and it may be good to complement this with quantitative studies as well.

4.2. Conclusion

In this report, we have described SUF resource centre's organisation and methods, and certain results of the continuous work. We have emphasised the importance of working together with the practitioners who support families headed by parents with intellectual disability, in a bottom‐up manner grounded in their needs, and to facilitate inter‐agency cooperation. Indeed, practitioners typically work in siloed organisations with limited resources, have generalist training, and difficulties staying up‐to‐date in multiple areas. Practitioners hence tend to value knowledge experts within or associated with their organisations, who can provide support and be consulted (Brown et al. 2022; Tarleton and Turney 2020). While there are differences between countries, we hope that SUF's organisation and methods may inspire others who seek long‐term solutions to dissemination of knowledge, implementation of adapted methods, and development of inter‐agency cooperation, to better support families headed by parents with intellectual disability.

Author Contributions

Tommie Forslund: drafted the manuscript. He is also responsible for the work reported herein, most notably through empirical research and knowledge dissemination. Sandra Melander: contributed to the final manuscript through comments on earlier drafts and revisions. She is also responsible for the work reported herein, most notably through the development and implementation of adapted methods, consultations, knowledge dissemination, and support of inter‐agency cooperation. Lydia Springer: contributed to the final manuscript through comments on earlier drafts and revisions. She is also responsible for the work reported herein, most notably through the development and implementation of adapted methods, consultations, knowledge dissemination, and support of inter‐agency cooperation. Karin Jöreskog: contributed to the final manuscript through comments on earlier drafts and revisions. She is also responsible for the work reported herein, most notably through the development and implementation of adapted methods, knowledge dissemination, research, and support of inter‐agency cooperation. Laila Dahlström Stolpe: contributed to the final manuscript through comments on earlier drafts and revisions. She is also responsible for the work reported herein, most notably through knowledge dissemination and visual design related to adapted methods. All authors approve of the final version and agree to be accountable for all aspects of the work.

Disclosure

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Acknowledgements

We would like to thank the parents with lived experience in our parent network—your perspectives are irreplaceable. We also want to thank all the practitioners who have worked so tirelessly in the local SUF groups over the years—without your work, there would be no development in adapted support. We would also like to thank the management group for your continuous support and dedication. We would also like to thank Gunnel Janeslätt, who previously held the position as researcher at SUF, and who has overseen the work on many of the empirical studies described. Relatedly, we want to thank all the researchers we have collaborated with on the studies concerning the adapted methods of support. Finally, we would like to thank Region Uppsala and its municipalities for continued support through the collaboration agreement.

Forslund, T. , Melander S., Springer L., Stolpe L. D., and Jöreskog K.. 2025. “Adapted Support to Families Headed by Parents With Intellectual Disability Through Support to Practitioners: SUF Resource Centre and Examples From Uppsala, Sweden.” Journal of Applied Research in Intellectual Disabilities 38, no. 5: e70136. 10.1111/jar.70136.

Funding: The authors received no specific funding for this work.

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.

References

  1. Adolfsson, P. , Janeslätt G., Lindstedt H., and Jöreskog K.. 2021. “Mothers With Cognitive Limitations Who Have Children in Placement Benefit From Intervention.” Child & Family Social Work 26, no. 1: 79–88. 10.1111/cfs.12791. [DOI] [Google Scholar]
  2. Adolfsson, P. , Lindstedt H., Janeslätt G., and Jöreskog K.. 2025. “A Father Nevertheless: Self‐Confident but Resigned Fathers With Children in Foster Care.” Journal of Intellectual Disabilities 29, no. 2: 271–288. 10.1177/17446295231225525. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. ASVZ . 2022. “Toolkit. Children, What Does That Involve?” http://www.asvz.nl/kinderwensenouderschap/en/toolkit/.
  4. Aunos, M. , Feldman M., and Goupil G.. 2008. “Mothering With Intellectual Disabili‐ Ties: Relationship Between Social Support, Health and Well‐Being, Parenting and Child Behaviour Outcomes.” Journal of Applied Research in Intellectual Disabilities 21: 320–330. 10.1111/j.1468-3148.2008.00447.x. [DOI] [Google Scholar]
  5. Booth, T. , Booth W., and McConnell D.. 2005. “The Prevalence and Outcomes of Care Proceedings Involving Parents With Learning Difficulties in the Family Courts.” Journal of Allied Research in Intellectual Disabilities 18: 7–17. 10.1111/j.1468-3148.2004.00204.x. [DOI] [Google Scholar]
  6. Brown, H. K. , Tint A., Heifetz M., et al. 2022. “Barriers and Requirements for Parenting Supports and Mental Health Care Among Mothers With Intellectual Disabilities: Health and Social Service‐Provider Perspectives.” Research in Developmental Disabilities 126: 104237. 10.1016/j.ridd.2022.104237. [DOI] [PubMed] [Google Scholar]
  7. Collings, S. , and Llewellyn G.. 2012. “Children of Parents With Intellectual Disability: Facing Poor Outcomes or Faring Okay?” Journal of Intellectual and Developmental Disability 37, no. 1: 65–82. 10.3109/13668250.2011.648610. [DOI] [PubMed] [Google Scholar]
  8. Family Law and Parental Support Authority [Myndigheten för Familjerätt och Föräldraskapsstöd] . 2023. “Final Report: Continued Support in the Implementation of a National Strategy for Strengthened Parenting Support [Slutrapport: Fortsatt Stöd I Genomförande Av En Nationell Strategi För Ett Stärkt Föräldraskapsstöd].” https://mfof.se/foraldraskapsstod/nationell‐strategi‐for‐ett‐starkt‐foraldraskapsstod.html.
  9. Feldman, M. A. 1994. “Parenting Education for Parents With Intellectual Disabilities: A Review of Outcome Studies.” Research in Developmental Disabilities 15, no. 4: 299–332. 10.1016/0891-4222(94)90009-4. [DOI] [PubMed] [Google Scholar]
  10. Feldman, M. A. , and Aunos M.. 2020. “Recent Trends and Future Directions in Research Regarding Parents With Intellectual and Developmental Disabilities.” Current Developmental Disorders Reports 7, no. 3: 173–181. 10.1007/s40474-020-00204-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. Fernqvist, S. 2015. “Negotiating Parenthood: Experiences of Economic Hardship Among Parents With Cognitive Difficulties.” Journal of Intellectual Disabilities 19, no. 3: 215–229. 10.1177/1744629515571379. [DOI] [PubMed] [Google Scholar]
  12. Forslund, T. , Fernqvist S., and Tegler H.. 2022. “Parents With Intellectual Disability Reporting on Factors Affecting Their Caregiving in the Wake of the COVID‐19 Pandemic: A Qualitative Study.” Journal of Applied Research in Intellectual Disabilities 35, no. 6: 1380–1389. 10.1111/jar.13026. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Forslund, T. , Lindberg L., and Granqvist P.. 2022. “Behavior Problems Among Children of Mothers With Mild Intellectual Disability: The Role of Maternal Sensitivity, Trauma History, and Intelligence.” Disabilities 2, no. 3: 488–500. 10.3390/disabilities2030035. [DOI] [Google Scholar]
  14. Granqvist, P. , Forslund T., Fransson M., Springer L., and Lindberg L.. 2014. “Mothers With Intellectual Disability, Their Experiences of Maltreatment, and Their Children's Attachment Representations: A Small‐Group Matched Comparison Study.” Attachment & Human Development 16, no. 5: 417–436. 10.1080/14616734.2014.926946. [DOI] [PubMed] [Google Scholar]
  15. Hammarlund, M. , Granqvist P., and Forslund T.. 2023. “Experiences of Interpersonal Trauma Among Parents With Intellectual Disabilities: A Systematic Review.” Trauma, Violence & Abuse 24, no. 4: 2843–2862. 10.1177/15248380221119237. [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Hodes, M. W. , Meppelder M., De Moor M., Kef S., and Schuengel C.. 2018. “Effects of Video‐Feedback Intervention on Harmonious Parent–Child Interaction and Sensitive Discipline of Parents With Intellectual Disabilities: A Randomized Controlled Trial.” Child: Care, Health and Development 44, no. 2: 304–311. 10.1111/cch.12506. [DOI] [PubMed] [Google Scholar]
  17. Höglund, B. , Janeslätt G., Arvidsson P., and Randell E.. 2023. “Efficacy of a School‐Based Intervention to Influence Attitudes About Future Parenting Among Swedish Youth With Intellectual Disability: An RCT Study.” Journal of Applied Research in Intellectual Disabilities 36, no. 5: 1000–1012. 10.1111/jar.13109. [DOI] [PubMed] [Google Scholar]
  18. Holmefur, M. , Forslund T., Randell E., et al. 2025. “Evaluation of a Home‐Based Parenting Support Programme—Parenting Young Children—For Parents With Intellectual and Developmental Disabilities When There Is a Risk for Neglect: Study Protocol for a Multi‐Centre Study.” PLoS One 20, no. 2: e0318447. 10.1371/journal.pone.0318447. [DOI] [PMC free article] [PubMed] [Google Scholar]
  19. Janeslätt, G. , Jöreskog K., Lindstedt H., and Adolfsson P.. 2019. “Experiences of the Maternal Role and Support in Mothers With Cognitive Limitations Who Have Children in Placement.” Child & Family Social Work 24, no. 4: 494–502. 10.1111/cfs.12629. [DOI] [Google Scholar]
  20. Janeslätt, G. , Larsson M., Wickström M., Springer L., and Höglund B.. 2019. “An Intervention Using the Parenting Toolkit “Children—What Does It Involve?” And the Real‐Care‐Baby Simulator Among Students With Intellectual Disability—A Feasibility Study.” Journal of Applied Research in Intellectual Disabilities 32, no. 2: 380–389. 10.1111/jar.12535. [DOI] [PubMed] [Google Scholar]
  21. Jöreskog, K. 2009. “Checklists, Patience and Solidarity—Support to Parents With Intellectual Limitations [Checklistor, Tålamod Och Gemenskap—Stöd Till Föräldrar Med Intellektuella Begränsningar]. Experiences From FIB‐Project [Erfarenheter från FIB‐Projekt 2005–2008], Uppsala Universitet.” https://www.arvsfonden.se/download/18.5eb95a9b1722c1f9610f5a1/1590416106468/utvarderingsrapport_‐_checklistor_talamod_och_gemenskap.pdf.
  22. LaLiberte, T. , Piescher K., Mickelson N., and Lee M. H.. 2017. “Child Protection Services and Parents With Intellectual and Developmental Disabilities.” Journal of Applied Research in Intellectual Disabilities 30, no. 3: 521–532. 10.1111/jar.12323. [DOI] [PubMed] [Google Scholar]
  23. Lindberg, L. , Fransson M., Forslund T., Springer L., and Granqvist P.. 2017. “Maternal Sensitivity in Mothers With Mild Intellectual Disabilities Is Related to Experiences of Maltreatment and Predictive of Child Attachment: A Matched‐Comparison Study.” Journal of Applied Research in Intellectual Disabilities 30, no. 3: 445–455. 10.1111/jar.12300. [DOI] [PubMed] [Google Scholar]
  24. Llewellyn, G. , McConnell D., and Ferronato L.. 2003. “Prevalence and Outcomes for Parents With Disabilities and Their Children in an Australian Court Sample.” Child Abuse and Neglect 27: 235–251. 10.1016/S0145-2134(03)00004-8. [DOI] [PubMed] [Google Scholar]
  25. MacIntyre, G. , Stewart A., and McGregor S.. 2019. “The Double‐Edged Sword of Vulnerability: Explaining the Persistent Challenges for Practitioners in Supporting Parents With Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 32, no. 6: 1523–1534. 10.1111/jar.12647. [DOI] [PubMed] [Google Scholar]
  26. Mayes, R. , Tozer R., and Elder M.. 2011. “An Innovative Support Group for Parents With Intellectual Disabilities Whose Children Have Been Removed.” Developing Practice: The Child, Youth and Family Work Journal 29: 58–67. [Google Scholar]
  27. Mc Hugh, E. , and Starke M.. 2015. “Understanding Support Workers' Competence Development in Working With Parents With Intellectual Disability.” Journal of Intellectual Disabilities 19, no. 4: 326–341. 10.1177/174462951557604. [DOI] [PubMed] [Google Scholar]
  28. McConnell, D. , Aunos M., Pacheco L., and Feldman M.. 2021. “Child Maltreatment Investigations in Canada: Main and Moderating Effects of Primary Caregiver Cognitive Impairment.” Child Maltreatment 26, no. 1: 115–125. 10.1177/1077559520910806. [DOI] [PubMed] [Google Scholar]
  29. McConnell, D. , and Phelan S.. 2022. “The Devolution of Eugenic Practices: Sexual and Reproductive Health and Oppression of People With Intellectual Disability.” Social Science & Medicine 298: 114877. 10.1016/j.socscimed.2022.114877. [DOI] [PubMed] [Google Scholar]
  30. McGaw, S. , Scully T., and Pritchard C.. 2010. “Predicting the Unpredictable? Identifying High‐Risk Versus Low‐Risk Parents With Intellectual Disabilities.” Child Abuse & Neglect 34, no. 9: 699–710. 10.1016/j.chiabu.2010.02.006. [DOI] [PubMed] [Google Scholar]
  31. Melander, S. , Janeslätt G., Adolfsson P., and Jöreskog K.. 2025. “Group Intervention for Parents With Intellectual and Developmental Disabilities With Children in Placement: A Case Study Exploring the Long‐Term Process and Outcomes.” Adoption and Fostering 49, no. 1: 52–74. 10.1177/03085759241312686. [DOI] [Google Scholar]
  32. Meppelder, M. , Hodes M., Kef S., and Schuengel C.. 2015. “Parenting Stress and Child Behaviour Problems Among Parents With Intellectual Disabilities: The Buffering Role of Resources.” Journal of Intellectual Disability Research 59, no. 7: 664–677. [DOI] [PubMed] [Google Scholar]
  33. Mildon, R. , Wade C., and Matthews J.. 2008. “Considering the Contextual Fit of an Intervention for Families Headed by Parents With an Intellectual Disability: An Exploratory Study.” Journal of Applied Research in Intellectual Disabilities 21, no. 4: 377–387. 10.1111/j.1468-3148.2008.00451.x. [DOI] [Google Scholar]
  34. Ministry of Health and Social Affairs [Socialdepartementet] . 2008. A National Strategy for Improved Parenting Support—A Win for Everybody [Nationell Strategi för ett utvecklat föräldrastöd—En vinst för alla], SOU, 131. Swedish Government Offices. [Google Scholar]
  35. Ministry of Health and Social Affairs [Socialdepartementet] . 2018. A National Strategy for Strengthened Parenting Support. [En Nationell Strategi För Ett Stärkt Föräldraskapsstöd]. Swedish Government Offices. [Google Scholar]
  36. Pacheco, L. , Aunos M., Feldman M., and McConnell D.. 2022. “Improving Services for Parents With Intellectual Disability and Their Families: Views of Canadian Social Service Workers.” Health & Social Care in the Community 30, no. 6: e5570–e5578. 10.1111/hsc.13982. [DOI] [PubMed] [Google Scholar]
  37. Randell, E. , Janeslätt G., and Höglund B.. 2021. “A School‐Based Intervention Can Promote Insights Into Future Parenting in Students With Intellectual Disabilities—A Swedish Interview Study.” Journal of Applied Research in Intellectual Disabilities 34, no. 2: 471–479. 10.1111/jar.12810. [DOI] [PubMed] [Google Scholar]
  38. Randell, E. , Janeslätt G., and Höglund B.. 2023. “The Toolkit and Real‐Care‐Baby Intervention–Experiences of Teachers and School Staff in Conducting an Intervention About Future Parenting.” Cogent Education 10, no. 1: 2219166. 10.1080/2331186X.2023.2219166. [DOI] [Google Scholar]
  39. Schuengel, C. , Kef S., Hodes M. W., and Meppelder M.. 2017. “Parents With Intellectual Disability.” Current Opinion in Psychology 15: 50–54. 10.1016/j.copsyc.2017.02.022. [DOI] [PubMed] [Google Scholar]
  40. Spencer, M. , Tarleton B., Collings S., McIntyre G., and Turney D.. 2024. “If We Know What Works, Why Aren't We Doing It?” British Journal of Social Work 54, no. 6: 2808–2825. 10.1093/bjsw/bcae080. [DOI] [Google Scholar]
  41. Starke, M. , Wade C., Feldman M. A., and Mildon R.. 2013. “Parenting With Disabilities: Experiences From Implementing a Parenting Support Programme in Sweden.” Journal of Intellectual Disabilities 17, no. 2: 145–156. 10.1177/1744629513483523. [DOI] [PubMed] [Google Scholar]
  42. Stefánsdóttir, S. , Rice J. G., and Sigurjónsdóttir H. B.. 2024. “Safeguarding Families and Rights of Parents With Intellectual Disability Involved in Child Protection.” International Journal of Disability and Social Justice 4, no. 2: 91–110. 10.13169/intljofdissocjus.4.2.0091. [DOI] [Google Scholar]
  43. Tarleton, B. , and Turney D.. 2020. “Understanding ‘Successful Practice/s’ With Parents With Learning Difficulties When There Are Concerns About Child Neglect: The Contribution of Social Practice Theory.” Child Indicators Research 13, no. 2: 387–409. 10.1007/s12187-019-09682-y. [DOI] [Google Scholar]
  44. Tarleton, B. , and Ward L.. 2007. ““Parenting With Support”: The Views and Experiences of Parents With Intellectual Disabilities.” Journal of Policy and Practice in Intellectual Disabilities 4, no. 3: 194–202. 10.1111/j.1741-1130.2007.00118.x. [DOI] [Google Scholar]
  45. United Nations . 1989. “Convention on the Rights of the Child (UNCRC).” https://www.ohchr.org/en/instruments‐mechanisms/instruments/convention‐rights‐child.
  46. United Nations . 2006. “Convention on the Rights of Persons With Disabilities (UNCRPD).” https://social.desa.un.org/issues/disability/crpd/convention‐on‐the‐rights‐of‐persons‐with‐disabilities‐crpd. [DOI] [PubMed]
  47. Van Nieuwenhuijzen, M. , Koet S., and Lever M.. 2025. “Barriers and Facilitators in Reaching and Supporting Parents With Intellectual Disabilities.” Disability and Rehabilitation 5, no. 2: 35. 10.3390/disabilities5020035. [DOI] [PMC free article] [PubMed] [Google Scholar]
  48. Wade, C. , Llewellyn G., and Matthews J.. 2008. “Review of Parent Training Interventions for Parents With Intellectual Disability.” Journal of Applied Research in Intellectual Disabilities 21, no. 4: 351–366. 10.1111/j.1468-3148.2008.00449.x. [DOI] [Google Scholar]
  49. Wickström, M. , Höglund B., Larsson M., and Lundgren M.. 2017. “Increased Risk for Mental Illness, Injuries, and Violence in Children Born to Mothers With Intellectual Disability: A Register Study in Sweden During 1999–2012.” Child Abuse & Neglect 65: 124–131. 10.1016/j.chiabu.2017.01.003. [DOI] [PubMed] [Google Scholar]

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