Towards a definition of multiple and complex needs in children and youth: Delphi study in Flanders and international survey

The study reported in this paper is presented in two parts:

Part 1:in a three round online Delphi survey (13), a consensus-based definition of MCN in children and youth was systematically constructed and assessed for agreement.

To achieve an agreed-upon definition of MCN in children and youth and given the fact that this population meets a wide variety of professionals in different fields, a cross-sector and multidisciplinary expert panel was recruited for this Delphi study, following sampling guidelines (13). The purposive sampling (14) was done via an initial email invitation sent to 53 experts. Experts were selected based on their expertise in and experience with MCN in children and youth and were working in the following fields:

1) youth mental health services; 2) youth care; 3) welfare; 4) juvenile justice; 5) services for disabled persons; and 6) education counseling.

In all, 47 (89%) of invited experts agreed to participate. Geographical spread was ensured as experts from every province in the Dutch speaking part of Belgium (Flanders) were included in the sample.

Table1details some of the sample characteristics.

In each round, all participants received a unique link to an online questionnaire in Qualtrics (Provo, Utah, version 3.8.0). Deadline for responding was set three to four weeks after the questionnaire was distributed and non-responders were sent reminder emails and contacted by phone. After each round, all participants received personalized feedback on their own answers and the panel’s answers in the previous round.

Round 1:Following the recommendations for classical Delphi studies (14,15) the first round consisted of an open question. The question was:How would you, based on your vision and expertise, describe the population of children and youth with MCN?

Qualtrics (Provo, Utah) and Excel (Microsoft) assisted in data analysis.

Round 1:The answers to the first round open question were analyzed following the sequence described for systematic text condensation (16). Three researchers followed the steps described in this approach of qualitative analysis:

In a subsequent survey, an international perspective was sought on the definition that was constructed in the Delphi study. A total of 25 experts (response rate 33%) originating from 11 different countries (UK, France, the Netherlands, Austria, Spain, Switzerland, USA, Canada, Australia, India, and Ecuador) rated and commented their individual agreement with the definition. Experts in MCN were sourced from their scientific publications and via professional societies: child and adolescent psychiatry (36%), child psychology (28%), social work (20%), forensic psychiatry (8%), children’s nursing (4%), and public policy (4%). Moreover, all participants in the survey had a longstanding experience (M = 25.72 years of professional experience in participating sample) with specific academic and practical expertise regarding MCN (56% professor or associate professor, 16% director/manager in youth care, 16% counselor/therapist, and 8% researcher).

Participants were asked to rate their agreement with the definition constructed in the Flemish Delphi study on a six-point Likert scale (ranging from strongly disagree to strongly agree) and were given the opportunity to comment on the definition.

In analogy with the Delphi study, score of 4, 5 or 6 on the Likert scale were quantified as agreement.

Response rates were as follows: 73.5% for the first round, 85.4% for the second round, and 91.7% for the third round. In each round, each of the professional fields and every Flemish province were represented. Table1illustrates the number of participant responses in each round.

The main themes in the answers to the open question in round 1 were identified using systematic text condensation (16) and related to:

1) the issues pertaining to the children and youth themselves (the degree and the different affected life domains);

After sorting the so-called ‘meaning units’ (text fragment containing relevant information) in the process of getting from themes to codes, definition possibilities were built in the condensation and synthetization steps of the process of systematic text condensation (16). Whereas these main themes suggested by all participants were very similar, differences emerged with regard to two aspects: first, the extent to which they viewed ‘family context’ problems as a separate and essential aspect of MCN; and second, the (casual) role that is attributed to (inadequate) services with regard to complexity. Inserting the two possibilities for each of these two aspects of the definition, four different definition options were built.

The results from the analysis of round 1 are summarized in table2.

In the second round, participants ranked the four definition possibilities. The definition that was selected, received 20% more points (based on the ranking by participants) compared to the definition with the second highest amount of points.

The final definition of MCN in children and youth was:

Children and adolescents with profound and interacting needs in the context of issues on several life domains (family context, functioning and integration in society) as well as psychiatric problems. The extent of their needs exceeds the capacity (expertise and resources) of existing services and sequential interventions lead to discontinuous care delivery. As such, existing services do not adequately meet the needs of these youths and their families. Cross-sector, integrated and assertive care delivery is necessary for safeguarding the wellbeing, development and societal integration of these young people.

There was a high consensus rate for this final definition, as 93.2% of the participants agreed it. Approximately 35% of the participants made an additional comment in round 2, regarding the definition ranked highest. However, each of these ideas was mentioned by less than 10% of the experts and consequently the definition was kept as formulated in the second round.

Participants suggested: 1) that physical problems/biological/medical domain should be emphasized specifically in the definition (n= 4); 2) to specify certain aspects (‘school problems’ (n= 1), at risk of unemployment’(n= 1), ‘parents with psychiatric illness’ (n= 1), ‘parents in a (temporary) difficult psychosocial situation (n= 1)) ‘behavior’ (n= 1) as suggestions to be mentioned separately in the definition; 3) to add ‘[…]’ between brackets after ‘integration in society’ to show that list is not limited to this suggested replacing ‘safeguarding’ with ‘stimulating’ (n= 1); 4) to complete the last sentence (regarding services) with: ‘as to prevent discontinuity’ (n= 1), ‘starting from a shared vision with youths and parents’ (n= 1), high intensity of treatment needed (n= 1), ‘multidisciplinary’ (n= 1); and 5) that the definition is complete and/or should not be longer (n= 4).

A total of 25 international experts (response rate 33%) rated their agreement with the definition that was developed during the Delphi study. In total, 88 percent of these international experts agreed with the definition and gave scores 4 and above on a six-point Likert scale (M = 4.6, SD = 1.2; Mdn = 5). A total of 60 percent of the international experts made an additional comment. These revolved around: 1) the inclusion of the aspect of problems of the child/adolescent as well as the shortcomings of services. This was viewed by some as very positive, as they highlighted how a mismatch between services or needs/failing services are part of the cumulative harm (n= 4). Others indicated they would not include this in the definition (n= 4); 2) the terminology ‘psychiatric problems’ was criticized/replaced by ‘mental health’ (n= 3), or too much emphasis was placed on the psychiatric aspect in the definition (n= 2); 3) suggestions to specify some aspects: ‘detail psychiatric problems: behavior, attachment, […]’ (n= 1), ‘frequent history of trauma’(n= 1), ‘family problems’ (n= 1) ‘high-risk or criminal behavior’ (n= 2),’ financial problems’ (n= 1), ‘difficulties in access services due to remoteness’ (n= 1), ‘school problems’ (n= 2) and ‘work problems’ (n= 1); 4) suggested to specify ‘existing services working alone’ rather than ‘existing services’ (n= 1); 5) to replace ‘profound’ by ‘severe’ (n= 1); and 6) the definition is too long and/or complex (n= 2).

The definition of MCN in children and youth that was constructed in this Delphi study is largely in line with the concepts scattered in social and health literature describing MCN. Elements of the definition that are similar to the literature are: 1) the dimensions of severity (‘depth’) as well as interrelatedness (‘breadth’) of issues are important in determining the complexity; and 2) the role of services in complexity, and the need for services to collaborate (2,18). However, the physical conditions that are often mentioned in the literature about vulnerable children and youth with multiple needs were not included as an element of the definition in this Delphi study.

The needs of children and youth with MCN are characterized by the participating experts as being profound as well as interacting on several life domains. The fact that complexity in needs revolves around severity, as well as the interrelatedness of issues is described in terms of ‘depth’ (severity) and ‘breadth’ (affecting several domains) in earlier reports (18). The degree of severity of one issue can create a considerable challenge for the service system, but the fact that a multitude of issues exists is even more daunting, as it is the interaction of risks that produces the most harmful effects (4,19). Considering the breadth of issues, it is important to look beyond a narrow definitional vision limited to each sector’s specific expertise, and to have sufficient attention for aspects relating to functioning and participating in society and ordinary life (2,20). In line with this idea is the recommendation to use a definition for MCN is non-categorical in that it does not assign the responsibility to one single sector or discipline but rather acknowledges the fact that needs may arise from a number of different conditions and that focuses on the interrelatedness of issues (20).

Besides pointing out the difficulties of these young people and their relatives, the definition developed in this study also highlights the mismatch between the needs of these families, and the fragmented care delivery they may experience. The perspective that the needs of these populations at the extreme of a spectrum of case complexity overwhelm the resources, mandate or possibilities of individual professionals or agencies is also endorsed in the literature (1,4). Even when individual services are providing high-quality care, the varied, specialized and changing needs of children and youth with MCN, ask for cross-sector resources and expertise, with a focus on continuity of care.

Some authors define the population of youths as high risk due to the fact that their individual characteristics (e.g. behavioral issues) conflict with the system characteristic such as high caseloads and reactive casework. That conflict results in care delivery that does not meet the needs of these complex cases, and professionals who are overwhelmed and feeling helpless (21). Others take this idea one step further and take the shortcomings of care delivery, rather than the individual problems, as a starting point and argue that complexity arises due to the failure of services to meet needs adequately (22). In that prospect, the person’s needs are not necessarily complex, but it is the challenge in coordinating all different services that people with MCN need across the various sectors that creates complexity (23). As such, complexity is by some authors considered to originate in the eye of the beholder, referring to the fact that skills and resources of professionals affect how ‘complex’ a child’s issues and circumstances are considered to be (22).

The definition constructed in this Delphi study highlights the importance of an integrated care delivery approach and as such is in line with literature recommendations pointing out the importance of intensive interagency and cross-sector collaboration including shared goals, accountability strategies, and outcome evaluation. Indeed, adequately meeting the needs of this population requires all professionals to work collaboratively and join resources to achieve common goals: ensuring a safe and caring environment with consistent structure and routine, emotional containment and support, and planned specialized responses to behaviors and emotions (22). Several authors point out that limited communication and coordination of services across sectors is not sufficient to ensure that the needs of youth with MCN are adequately addressed, arguing the critical importance of integrated care; particularly mental health, justice, and child welfare. They argue that it is critical to fully integrate services such as mental health, juvenile justice, child welfare, and substance abuse as a means of improving measurable outcomes for the most vulnerable children (24). The idea that more complex cases require stepping up on the collaboration spectrum is widely endorsed in the broader literature on interagency collaboration (25,26).

A divergence when comparing the definition in this Delphi study with the available literature is the fact that physical problems or risks were not explicated in the definition constructed by the expert panel in this study. However, numerous accounts in the literature highlight how in vulnerable populations of children and youth, physical and psychosocial difficulties are strongly related and reinforce each other (27). Possibly, these experts do not view the physical problems as condition sine qua non (absolutely necessary) in order to classify a case as MCN. Alternatively, this could be related to the fact that most of the expert panel did not work in a medical setting. Either way, considering the frequency of physical problems in vulnerable youths (28), it is important to be attentive to them when evaluating children and youth with MCN.

None of the suggested changes or additions that experts made after the second Delphi round exceeded the a priori threshold to be presented to all participants.

Regarding the survey, following the suggestions of the international experts could lead us to a further adaptation of the definition:

1) replacing psychiatric problems by mental health issues, due to the fact that psychiatric problems is too narrow as a term, or too definitive of psychiatric pathology and can have different significance in different countries;

Other issues were more contested. While some international participants stressed the importance of having both the child issues and the failure of services or the failure to access services in the definition, others indicated they would not include any information on services or their capacity to cope in a definition. As described above, this disparity also exists in the literature.

In our opinion, while neither generalization nor determination of a causal link is possible, fragmented care delivery and many referrals could be important in the cumulative harm experienced by these children and youth and warrants attention when evaluating their needs and planning services.