Design and settings of The PLUSS-model
Since 2015, the CHC in Jönköping has developed its routines for early identification of communication and interaction difficulties (suspected autism spectrum disorders) in young children. The identified children were then first assessed by a CHP before referral to specialist level for in-depth assessment. The inflow of children from CHC/CHP was greater than foreseen. As a result, CHC identified more children with these difficulties than before. The increase of inflow caused queues to build up for the Habilitation Center and raised questions on priority considerations towards other groups of children with disabilities. Although the children of the PLUSS target group have an important need of support and interventions as early as possible during their development - not all these children correspond to the group of patients managed by the Habilitation Center in the longer perspective (i.e., not all of them will be found to have an intellectual disability).
The CHC also recognized the need to clarify, and further collaborate with, the specialist level best suited to provide support and treatment for children younger than 6 years with complex attachment problems, trauma, and selective mutism. The Child and Adolescent Psychiatry (CAP) in Region Jönköping County has historically been meeting few children younger than 6 years. The age group is included in CAP's interface, but currently, there is no established team for pre-school age children at the CAP.
As the CHC developed its method of identifying children with neurodevelopmental difficulties early in life, the need for early interventions also increased. There was no arena for interventions for families and children under the age of six with neurodevelopmental or mental/psychological difficulties, without a requirement for a present diagnosis.
All above mentioned obstacles in the service system identified by The Jönköping Health Care Managers for CHC, Habilitation Center, Child and Adolescent Psychiatry (CAP) and Rehabilitation Center (Speech Therapist) formed the idea of a collaborative development team to coordinate and provide available interventions to a child's closest network; parents, preschool and, if necessary, involve the social services before the specialist level was reached. In 2018 multi-agency managers requested and obtained government funding for a collaborative project that was named PLUSS. In 2019, a steering group and an operative multi-professional and multi-agency working group were established. The local managers at preschools and social services were informed and invited to collaborate within the project.
Before PLUSS-project started, three semi-structured focus group interviews were completed, including 13 parents of children with behaviour and/or ESSENCE difficulties. Parents' experiences of assessment and interventions from Child Health Care, Child and Adolescent Psychiatry and Child and Youth Habilitation were studied. The analysis led to four main categories that should be considered in design of the working model: confidence, information, competence, and collaboration. Participants described a long wait for their child to be assessed and a lack of information that caused feelings of doubt. Furthermore, a lack of competence among health care professionals and a lack of cooperation with the family was described. Parents requested support to help their child whilst waiting for the assessment process. Increased competence for professionals was also asked for in areas of children's mental health and development. The need for improvements could be detected by taking part in parents' experiences with health care and health care professionals.
The model aims to accomplish a holistic perspective on children's daily life, preschool, family, and organizational aspects and to enable early intervention before any diagnosis. New initiatives are built upon already existing structures provided by the CHC, family centers, preschools, social services and within the specialist level. Interventions in PLUSS are mostly provided in group forms, with groups matching the needs of the child and parents.
The PLUSS-model involves parents/appointed guardians, child health care, child and adolescent psychiatry, child and youth habilitation, rehabilitation center (speech therapists), preschools and social well-fare services as well as researchers from the Linköping University. The multi-professional competencies include pediatrics, child and adolescent psychiatry and habilitation, pre-school pedagogy and sociology.
A project leader heads the project and is assisted by an operative inter-professional working group consisting of local, experienced professionals. The group is created both for the continuous clinical work and for the development of the model. A steering group, involving representatives from different partners, gives advice, ensures delivery of the project outputs and the achievement of project outcomes. This management structure did not exist before the start of the project. The project leader is responsible for conveying information, if necessary, in between meetings. Meetings take place twice per semester. The professionals of the different departments and activities receive continuous information about the ongoing PLUSS-work.
The PLUSS-model is built upon existing processes for patient flow, from early detection to assessment and interventions (Fig. 1). No delay of routine practices such as primary assessment nor referral will be caused to patients in the PLUSS-flow. The waiting time for assessment by a CHP is approximately 6 months.
Information about PLUSS is given from a CHC-nurse to parents. Parents are then, before the visit to the CHP, asked to fill out questionnaires and sign a consent form for participation in PLUSS. Before the Corona pandemic, if participation was accepted, the forms were brought to the CHP's first assessment of the child. With digital assessment forms are sent in by post. During the first assessment, the CHP interviews the parents and obtains consent for contacting the preschool. The parents are then offered participation in parental training and educational activities (PRIMUS), see below. Data is then collected from the preschool and preschool teachers are offered a training program together with the parents.
The multidisciplinary PLUSS-team act as consultants to the child health care psychologist to assess the need for further examination within specialist care. This can be done after the completion of interventions or early in the process. After the PLUSS-team conference, parents are offered interventions recommended by the team. The menu of available interventions (Table 1) is a joint living document in which existing, and newly created initiatives, are gathered. The purpose of this list is to make all parties involved in the interventions available, through a clear and structured tool. The intervention list also clarifies the need for coordination between several actors and activities, such as between home and preschool.
Table 1
Interventions provided by PLUSS
Type of need | Type of intervention | Provider | Receiver (C = child, P = parents, G = group, S = staff) |
Regulation of emotions and behaviour | -Parental support | CHC | P |
Problems in social interaction and play with peers | -Special pedagogical support supervision and efforts based on organization, group and individual. | CHC, Preschool, Habilitation | C,G,S |
Problems in everyday functioning. | -Function support – time aids etc. | CHC, Habilitation | C,P, S |
Speech and language related problems | • -Parental Education: Series Talks and Social Stories • -The Swedish National Agency for Education's reading lift, module several languages in the preschool. • -Material that speech therapist/special education teacher will share with preschool staff who work with it from a group perspective | Habilitation, Rehabilitation Center (speech therapist) | P |
Late motor development | -Physiotherapist assessment | Habilitation | C |
Anxiety | - Parental support - Support and treatment - Preschool: special pedagogical supervision and interventions based on organization, group and individual. | CHC, CAP | P, S |
Early life adversity | - Parental support - Support and treatment - TMO (trauma-conscious care) -CPP | CHC, CAP, pre-schools, social services | C, P, S |
Attachment problems | - WWW - Parental support - COS-P - Attachment trauma – differential diagnosis autism - COS-P as individual support - Parental support/Family Treatment | CHC, CAP, social services | C,P,G |
Suspected or confirmed disability of a child's parent | Following aid decisions: - Parental support/Family Treatment - Collaboration with other actors (disability services etc) - Network Meetings - Contact family - Family home placement/network placement | Social services | P |
Suspected or confirmed mental illness in the child's family or immediate family | - Adult psychiatry -Parental support/Family Treatment - Collaboration with e.g. LSS or other actors - Network Meetings - Contact family - Family home placement/network placement | Social services | C,P |
Parental abuse | - Parental support/Family Treatment - External outpatient care for children and/or adults. - Network Meetings - Contact family - Family home placement/network placement - Treatment via placement or outpatient care for adult drug users - CPP | Social services, CAP | P |
The participants of the PLUSS-team are required to have a mandate to accept recommended referrals to their departments, to reduce the risk that some children "fall between chairs". The time required for each child included in PLUSS is estimated to be 5.5 hours, from the CHC nurse information to the PLUSS-team case discussion
Parental training PRIMUS
The PRIMUS intervention comprises a total of five lessons, three hours each. It is a manual-based group program for parents with children between the ages of 3–6 years. The lessons are suitable for both small groups (8–12 participants) and large groups (15–30 participants). Lessons are held recurrently at the same time once a week. The topics that are covered in the program include child development, difficulties in concentration, motor skills, perception, tics and compulsions, difficulties in speech and language, social interaction, theoretical thinking as well as daily routines. This intervention aims to increase understanding of the child's difficulties; tools to help the child develop and increase functioning; more harmonious interaction between child and parents; reduced stress and frustration due to conflicts in the family and others around the child, as well as information to parents on where to turn for professional help.
Preschool teacher training
Apart from PRIMUS, an intervention for preschool teachers is offered, and Internet-based teacher training which parents also are encouraged to take part of. This intervention aims to facilitate cooperation between parents and preschool, to create a common ground for information sharing and reflection upon different perspectives, in the best interest of the child. The teacher training consists of seven film modules about normal development and common neurodevelopmental difficulties including self-regulation. In addition; communication, structure of everyday life and the role of clarifying methods in pedagogy are included. This is further deepened in a workshop, to which parents and preschool teachers are invited. During this workshop, the parents and preschool teachers jointly acquire practical approaches in areas included in the education/training; clarifying methods in pedagogy, communication, and support in everyday life. With the child in mind, the parents and preschool teachers discuss and try different relevant exercises. The participants collect their thoughts in an "action list" in which common strategies and approaches are planned to stimulate the child's development both at home and in the educational environment.
Other interventions
The available interventions can be individual assessments and/or interventions for the child, family, and preschool (Table 1). These can be offered by a special educator, speech therapist or occupational therapist; targeted parent groups in the form of "Emotional children"; targeted parent groups in the form of "toilet school"; support in basic interaction; parental support and treatment; recommendations regarding the social services' general and targeted efforts - in consultation with the social secretary on-site; recommendations regarding the preschool's general and targeted efforts - in consultation with the special educator's competence in the area.
Study population of the pilot study
The PLUSS-model targets children who are referred to a CHP due to problems related to neurodevelopment. These difficulties are most often detected at a routine visit to the CHC when the child is 2.5 years old. During this routine visit, a nurse assesses development and screens for developmental difficulties. The most common causes for a psychologist consultation (and criteria for inclusion the PLUSS-model) are developmental delay, impairment in social interaction or motor skills, language and communication difficulties, hyperactivity, difficulties with concentration, self-regulation and behavioural problems, fear, anxiety, or other difficulties in everyday life. Feedback from the child's preschool is collected as a part of routine visits to CHC. No exclusion criteria are applied, except for parents only requesting support in their parental role. Furthermore, there is no eligibility requirement regarding a set diagnosis.
The model is currently employed in three out of 13 municipalities in Jönköping County and involves 18 professionals. The child population (0–18 years) is 76 394 in the whole of Jönköping County with 18 060 children between ages 1.5-5 years. Based on local statistics approximately 1806 children (10%) per year are expected to require assessment for neurodevelopmental difficulties in Jönköping County. Approximately 24% are born abroad or to immigrant parents, compared to a national number of 25%. 95 % of children in the target group participate in preschool activities. Close to 100% of children aged between 0–5 years attend the CHC routine checkups in Region Jönköping County. These routine check-ups are offered free of charge.
By now, approximately 130 children between ages 27–72 months have been assessed through the PLUSS approach. In the three municipalities employing the model so far, the child population within target ages is 8858. In 2020, 63 referrals for children aged 1–5 years were made to the CAP of Region Jönköping County. During the same year, 158 referrals were made to the Habilitation Center, out of which 127 came from CHC. At the Habilitation Center, many 1–5 years old children wait 12–18 months for further assessment and interventions. The CAP, who in comparison receive fewer referrals for children aged 1–5 years, choose to prioritize this age group to minimize waiting time, which other age groups within CAP have.
Data collection
The PLUSS-project is studied within a research project that was retrospectively registered in Clinical Trials 2021, PLUSS identifier, NCT04815889. Child data is collected using the following instruments: Strength and Difficulties Questionnaire (SDQ) [32, 33] rated by preschool teachers and parents, Child Engagement Questionnaire (CEQ) [34] rated by preschool teachers, LAPS [35] rated by child health care psychologists at baseline and CHC nurses at follow-up and JA-OBS [36] rated by CHC nurses. Data will be collected at baseline, after any PLUSS intervention and at the regular 5-year old visit to the CHC.
Parent data will be collected through a separate questionnaire that covers different background factors such as profession, educational level, mother tongue or any earlier or present diagnoses. In addition, data on parental stress, satisfaction of interventions etc. will be collected. Qualitative data will be collected through focus group interviews with parents of children participating in PLUSS.
Structured follow-up research on collaboration between different PLUSS activities will be collected with a method called the Spider [37]. This is done before the PLUSS-model and then again every 6 months with professionals in the organization working with children/families in the target group.
Register data will be used for waiting time follow-up, number of visits and involved professionals, offered and completed interventions as well as other process-related outcomes. Data collection is managed by researchers and people in the operative working group with a special assignment for follow-up and organization of submitted forms. Data is obtained from parents, preschool teachers, CHC nurses and CHC psychologists.
A control group (n = 160) is recruited from municipalities that have not yet been included in the PLUSS clinical trial. Through this, children/families are not withheld from treatment that they would otherwise have received.