Participants
In total, 43 interviews were conducted with parents (N = 18), youth (N = 3) and professionals (N = 22). Four parent couples wished to be interviewed together and two parents requested to be interviewed in the presence of a professional for support. Demographics of the parents, youth and professionals can be found in Tables 1 and 2.
The participating youth were all adolescent-aged yet varied in gender, educational level, and family structure. Parents varied in age, educational level, family structure, although not in cultural background (mainly European) nor gender (majority of mothers). The group of professionals showed variation in age, work experience, educational level, expertise, and occupation; but not in gender (mainly women).
Table 1
Demographic Characteristics of Parents and Youth
Parents (N = 18) | | Youth (N = 3) | | |
Gender | | Gender | | |
Female | 14 (77,8%) | Female | 1 (33,3%) | |
Male | 4 (22,2%) | Male | 2 (66,7%) | |
Non-binary | 0 (0%) | Non-binary | 0 (0%) | |
Age | | Age | | |
30–39 years | 2 (11,1%) | 15 years | 1 (33,3%) | |
40–49 years | 8 (44,5%) | 16 years | 1 (33,3%) | |
50–59 years | 6 (33,3%) | 17 years | 1 (33,3%) | |
Unknown | 2 (11,1%) | Unknown | 0 (0%) | |
Cultural background | | Cultural background | | |
European | 17 (94,5%) | European | 2 (66,7%) | |
Non-European | 1 (5,5%) | Non-European | 1 (33,3%) | |
Highest educational level | | Highest educational level | | |
Secondary Vocational Education | 9 (50,1%) | High School | 1 (33,3%) | |
University of Applied Sciences | 6 (33,3%) | Secondary Vocational Education | 1 (33,3%) | |
University | 1 (5,5%) | University of Applied Sciences | 1 (33,3%) | |
Unknown | 2 (11,1%) | Unknown | 0 (0%) | |
Family structure | | Family structure | | |
Two-parent household | 12 (66,7%) | Two-parent household | 1 (33,3%) |
Single-parent household | 6 (33,3%) | Single-parent household | 2 (66,7%) |
Number of children One child Two children Three or more children | 2 (11,1%) | Number of children One child | 0 (0%) |
9 (50,1%) | Two children | 0 (0%) |
7 (38,8%) | Three or more children | 3 (100%) |
Table 2
Demographic and Personal Characteristics of Professionals
Professionals (N = 20) | |
Gender | |
Female | 19 (95%) |
Male | 1 (5%) |
Non-binary | 0 (0%) |
Age | |
30–39 years | 8 (40%) |
40–49 years | 7 (35%) |
50–59 years | 4 (20%) |
60–69 years | 1 (5%) |
Work experience in years | |
0–9 years | 5 (25%) |
10–19 years | 7 (35%) |
20–29 years | 5 (25%) |
30–39 years | 1 (5%) |
40–49 years | 2 (10%) |
Highest educational level | |
Secondary Vocational Education | 1 (5%) |
University of Applied Sciences | 13 (65%) |
University | 6 (30%) |
Occupation | |
Child and parent social worker | 13 (65%) |
Child psychiatrist/youth physician | 1 (5%) |
Psychologist/other therapist | 4 (20%) |
Pediatric nurse | 1 (5%) |
Systemic therapist | 1 (5%) |
Expertise | |
Intellectual disabilities | 5 (25%) |
Youth and parenting support | 9 (45%) |
Youth health service | 2 (10%) |
Youth mental health | 4 (20%) |
Findings
In our framework analysis, the elements parents, youth and professionals described as important predominantly fit within Makoul and Claymans’ SDM model of nine essential elements. However, these elements require a specific interpretation in the context of integrated youth care, regarding the diversity of participants in decision-making, the complexity of the problems and SDM as a continuous process of multiple decisions. In addition, parents, youth and professionals mentioned three elements complementary to the original model: (1) build collaborative relationships, (2) prioritize problems, goals and actions, and (3) interprofessional consultation.
In the following section, the nine existing and three complementary elements of SDM in the context of integrated youth care are presented. First, Table 3 summarizes the specific interpretation of Makoul and Claymans’ nine essential elements in integrated youth care. Then, the three complementary elements are presented in Table 4. Finally, based on our framework analysis, for each element the key points of its implementation in the context of integrated youth care, according to parents, youth and professionals, are described. We highlight roles of professionals and families in decision-making and differences in perspectives between parents, youth or professionals, if mentioned by participants. A perspective referred to as a families’ implies that it was described by both parents and youth.
Table 3
Interpretation of Makoul & Claymans (2006) Essential Elements of SDM in the Context of Integrated Y Care
Essential Elements of SDM a | Essential Elements of SDM in the Context of Integrated Youth Care | Summative Content Analysis | Quotes of Parents (Par), Youth (Y) and Professionals (Prof) Illustrating the Element |
Define or explain problem | Clarify multiple problems of the different family members and on various life domains. Also define the family’s goals and what is needed to achieve them. Explore the context and interrelatedness of the multiple problems, through diagnostic assessment. | Prof Par Y Total | n = 16 n = 18 n = 3 n = 37 | “In any case, you have to start with the goals of which families themselves say: this is what bothers us. And along the way, maybe there will be room for the goals we see.” (Prof1) |
Present options | Present options of care and brainstorm on solutions to the problems with the family. In addition to formal care options, consider which support can be provided by others, for example the informal network. | Prof Par Y Total | n = 12 n = 15 n = 3 n = 30 | “My needs she translates, she can identify what I am missing and with her knowledge find it for me.” (Par4) |
Discuss pros and cons (benefits/risks/costs) | Discuss pros and cons of the options in terms of benefits and costs for the whole family, e.g., regarding the required effort and time. | Prof Par Y Total | n = 2 n = 7 n = 0 n = 9 | “Everything is discussed. They do indicate clearly: from our point of view this seems like the better choice or this may seem wiser. But maybe this might appeal more to you.” (Par5) |
Assess clients’ values or preferences | Assess preferences of the various family members regarding the type and form of support (e.g., place, intensity, frequency) and the collaborative relationship between family and professional. Take into account their experiential knowledge. | Prof Par Y Total | n = 17 n = 18 n = 3 n = 38 | “That really serious listening is done, what you as a parent think it has to do with, or what makes things the way they are. And also what works and what won't work.” (Par13) |
Discuss client ability or self-efficacy to follow through with a plan | Consider whether a care plan is feasible for the whole family, regarding the required effort in time and focus, the achievability of the intended behavioral change. Note the required skills and motivation of a youth or parent to participate in a specific treatment. | Prof Par Y Total | n = 6 n = 9 n = 0 n = 15 | “It would be nice if you ask all three parties, child, parent and professional: is it feasible for you, what do you think? It is easily forgotten that parents are the ones who have to implement it.” (Par6) |
Provide professional knowledge or recommendations | Provide professional knowledge and advice on the problems and the care plan. Share professional reflections and concerns on the interaction of problems, the family dynamics, and the collaborative relationship. | Prof Par Y Total | n = 13 n = 18 n = 3 n = 34 | “I like that they let me talk out first and take my view, but give feedback and show a second side. I can sometimes think pretty black and white.” (Y1) |
Check or clarify understanding of facts and perspectives | Throughout the care process verify the family’s understanding of the problems and goals of care. Provide additional explanation or recapitulation, particularly to family members with intellectual disabilities. | Prof Par Y Total | n = 1 n = 6 n = 0 n = 7 | “A youth needs to understand it, because that's the way they know whether they can go along with it or not. I also need to understand what you (professional) want to do. If I think, ‘Okay, that's what you want to achieve and that seems beneficial to me’, then that's fine by me.” (Par6) |
Make or explicitly defer decision for a later time | Make a joint decision on the support to be provided and its implementation. | Prof Par Y Total | n = 14 n = 8 n = 2 n = 24 | “It's just both. I get to decide what I want, but then again I don't. Because he (professional) decides about it with me. Because if I get to decide 100% what I want to do myself, then what is he really there for?” (Y2) |
Arrange follow-up to evaluate the effectiveness of decisions, make deferred decisions or revise the treatment plan. | Continuously evaluate and adjust the care plan through evaluation meetings. Ensure that goals and support remain in line with the changing needs and preferences of the family over time. Evaluate both formally at set times, and informally throughout the support. | Prof Par Y Total | n = 11 n = 12 n = 1 n = 24 | “We also have regular evaluations to look back and see what we will focus on in the coming weeks. In that way, the approach is also very flexible and we can adjust things as needed at that moment.” (Par1) |
Note. n = number of participants quoting this element. Total number of participants N = 43, professionals N = 22, parents N = 18, youth N = 3.
a according to Makoul & Clayman, 2006
Table 4
Complementary Elements in the Context of Integrated Youth Care
Complementary Element | Description of the Element | Summative Content Analysis | Quotes of Parents (Par), Youth (Y) and Professionals (Prof) Illustrating the Element |
Build collaborative relationships | Build collaborative relationships between the various family members and professionals. Learn to know the family, their needs and preferences and take time to make a connection. | Prof Par Y Total | n = 17 n = 18 n = 3 n = 38 | “I always start by connecting with parents. That parents understand why you are there, what you are doing, what your approach is, by being understanding, apologizing, all those kinds of things.” (Prof18) |
Prioritize problems, goals and actions | Prioritize the order in which problems and goals should be addressed. Assign actions and responsibilities to the different professionals and family members. | Prof Par Y Total | n = 7 n = 7 n = 0 n = 14 | “And you try to figure out with the youth: what needs to be done and what to do first... Yes, sometimes a youth has to go to school because we have compulsory education. But if a youth has so much trauma, for example, you can put a youth in class very nicely but it's no use. Then something else will have to happen first.” (Prof10) |
Interprofessional consultation | Consult other professionals on problems, goals and options of support of the family, for example in multidisciplinary meetings. Strive for joint decisions on the support to be provided and its implementation. | Prof Par Y Total | n = 12 n = 2 n = 0 n = 14 | “We often start looking first to see if the care professionals agree with the plan and only then present it to the family. Because otherwise you end up with a kind of loose plan that only makes these families even more unstable. Because they are already so vulnerable.” (Prof8) |
Note. n = number of participants quoting this element. Total number of participants N = 43, professionals N = 22, parents N = 18, youth N = 3.
Framework Analysis
Nine Essential Elements
1 Define or Explain Problem. To align to the multitude and complexity of families’ problems, participants described four key points regarding this element. First, in defining problems and determining goals a broad view is essential according to families and professionals. What do different family members need in various life domains? This implies both the short term (e.g. urgent needs and crisis intervention) and the long term (e.g. changing family patterns and increasing self-reliance). Second, problem definition and goal setting was described as a process: family and professionals figure out what the family wants and needs as they talk and work together. Third, due to the complexity of the problems, throughout the care process new problems or needs arise that require decisions to be made. As a result, professionals and families regularly return to this element to redefine problems and goals. Finally, families and professionals alike reported professionals have an active role in identifying needs and increasing families’ awareness of significant problems and goals. However, the goals determined must be families’ own and not enforced by professionals.
2 Present Options. In the context of families facing multiple and enduring problems, presenting options of care to implement the determined goals was described by four key points. First, options of care are suggested for different family members and in various life domains. The options should take into account both the various family members and life domains, as well as the time dimension: options of care for both the short and long term. Second, because of the complexity of the problems, families viewed professionals as primarily skilled in and responsible for considering care options. However, families mentioned professionals should be receptive to ideas from the family and consider them seriously. Third, a number of professionals noted they first discuss and pre-select options with other professionals before presenting (a selection of) options to the family. Finally, due to the complexity of the problems and waiting lists in (youth) services, professionals mentioned that limited availability of options must be taken into account.
3 Discuss Pros and Cons (benefits/risks/costs). Discussing pros and cons of the presented care options with families was scarcely mentioned by participants. Some parents described discussing pros and cons of options in terms of feasibility of the care plan, considering families’ current capabilities and strengths. Few professionals reported discussing pros and cons of options, but mainly with other professionals.
4 Assess Families’ Values or Preferences. Because of the long-term nature of problems, families built up considerable experience with care, what needs to be considered in this element. First, parents and professionals emphasized the value of including parental experiential knowledge about their child, family dynamics and previous support in decision-making. Second, professionals as well as families reported family members may be unaware of their needs and values or may not express them adequately. This requires professionals to identify and describe families’ unspoken needs for them. Finally, professionals valued the belief jointly exploring families’ values and preferences is key in finding support that suits families. Even more important, families highlighted the importance of professionals expressing and embodying this belief.
5 Discuss Client Ability or Self-efficacy to Follow Through with a Plan. Instead of focusing on the ability of one individual client, a broad view is essential in this element. First, professionals and parents described this broad view in assessing the ability of different family members as well as the feasibility for the family as a whole. Second, parents emphasized the importance of verifying that advice given to youth is also manageable for the parents. After all, parents are responsible for their child. Moreover, parents may be needed in the implementation of a youth’s care plan or experience the consequences of advice given to youth in their family life.
6 Provide Professional Knowledge or Recommendations. Because of the complexity of families’ problems and of the care system involved, families and professionals emphasized the importance of providing professional knowledge in SDM, though four key points. First, professionals contribute essential expertise in defining and clarifying the interaction of problems. Second, their professional knowledge and experience is needed in suggesting options of support for families’ problems. Third, parents mentioned professionals provide advice on care options in both the short term and the long term. In the short term parents gain concrete advice on current problems. In the long term, parents benefit from professional's helicopter view of possible barriers and necessary support in new stages of life. Fourth, both parents and youth emphasized professionals should not enforce their own views in the decision-making process. Thus, a balance must be found between professional knowledge on the one hand and families’ values, preferences and experiential knowledge on the other.
7 Check or Clarify Understanding of Facts and Perspectives. Both professionals and parents mentioned the importance of checking understanding of facts and perspectives through the decision-making process. This element is of specific concern, considering the prevalent intellectual disabilities among both parents and youth from families with multiple and enduring problems. Consequently, parents or youth may require more frequent recapitulation or additional explanation of problems, goals and options of care. Furthermore, both professionals and parents noted that limited motivation for support may also be related to insufficient understanding. Therefore, they described motivational issues as a cue for professionals to check families’ understanding.
8 Make or Explicitly Defer Decision to a Later Time. In the integrated context of care for families with multiple problems, making a decision involves various stakeholders (e.g. family members and professionals from different organizations). These stakeholders can hold varying opinions, and have different authorities and roles. We identified three different forms of decision-making, mentioned by participants, in which professionals and families have differing roles. In the first form, professionals make a decision in interprofessional consultation, before presenting it to the family for approval. In the second form of decision-making, professionals and family jointly reach a decision in consultation. In the third form professionals decide for the family, to protect or compensate parents or youth in case of safety issues. Moreover, due to the multitude of problems and decisions to make, both parents and professionals recommended to prioritize which decisions are made with and without the family. In this way, overwhelming families with information and consultations is prevented.
9 Arrange Follow-up to Evaluate the Effectiveness of Decisions, Make Deferred Decisions or Revise the Treatment Plan. In the multitude and variability of problems, regular evaluations may bring structure to the decision-making process and support professionals adhering to goals. According to professionals, evaluations initiate a cycle of decision-making, trying out, evaluating and adjusting the care plan. Moreover, both parents and professionals emphasized joint evaluations can enhance families’ involvement and motivation in care.
Three Complementary Elements
In addition to the nine essential elements, we found three complementary elements families and professionals considered valuable in SDM.
1 Build Collaborative Relationships. A strong focus on building collaborative relationships is needed since many families have negative and often disappointing experiences with support. Learning to know families, their needs and preferences, making a connection and building trust were all described as needed to eventually make decisions together. Moreover, families and professionals mentioned that making shared decisions from partnership also contributes to building mutual trust.
2 Prioritize Problems, Goals and Actions. In the multitude of problems and goals, prioritization was described as a complementary element for SDM. As first key point in this element, professionals and parents reported prioritization is often based on professionals’ expertise on logical sequences in addressing problems. For example, by tackling financial problems first to create room for counseling or treatment. Second, priority can also be given to which problem weighs most heavily on families or to which intervention families are most motivated for. Third, parents and professionals emphasized families need professionals' support to gain overview on the various problems and, actually, be able to prioritize.
3 Interprofessional Consultation. Since there are often various professionals involved, interprofessional consultation takes place in various stages of decision-making and parallel to the decision-making process with families. This element was mainly mentioned by professionals. As first key point, they described to benefit from different perspectives and expertise when dealing with complex problems in families and making delicate, challenging decisions. Second, professionals reported mutual coordination between colleagues and with other care providers ensures an integrated care plan matching families’ needs. Third, professionals described different perspectives on interprofessional consultation. Some professionals deliberately pre-discuss decisions with other professionals to avoid unnecessary burden on families and present families a sorted-out care plan. They inform families in advance and afterwards of the issues discussed. For other professionals, interprofessional consultation in absence of families seemed to be a standard and unconscious practice in decision-making, after which the decision is presented to families for approval.
Summative Content Analysis
In a summative content analysis (see Tables 3 and 4), we found patterns regarding the numbers of participants of each group quoting the element concerned. Overall, most elements were mentioned by parents, youth and professionals. However, there were differences between the elements in the number of participants who quoted the element. For example, the elements Define or explain problem, Present options and Assess clients values and preferences were quoted by considerably more participants than the elements Discuss pros and cons and Check or clarify understanding. Moreover, there were differences between the groups in some elements. To illustrate, the complementary element Interprofessional consultation was quoted considerably more often by professionals than by parents and youth. However, we found participants within a group hold varying preferences regarding the implementation of the element, as described in the framework analysis. In addition, we found parents differed in the importance they attribute to an element. For example, one parent emphasized regular follow-ups as crucial in SDM, while another parent valued the inclusion of families’ experiential knowledge during SDM.