Eight dyads (N = 16) residing in Western Canada participated in this investigation of how young adults with intellectual and developmental disabilities (IDD) and their parents jointly construct, articulate, and act on goals pertinent to the young adults' transition to adulthood. Using the action-project method to collect and analyze conversations and video recall data, cases were grouped representing the ways goal-directed projects brought relationship (n = 4), planning (n = 3) or both (n = 1) to the foreground as joint projects. Resources internal to the dyad such as emotional resources, and external to the dyad, facilitated formulation and pursuit of projects. Lack of external supports and limited parental knowledge about IDD hindered joint project formulation.
The transition to adulthood is a meaningful process for typically developing individuals (Young et al., 2008; Young et al., 2015) and youth with intellectual and developmental disabilities (IDD) (Cooney, 2002; Murphy, Clegg, & Almack, 2011). Youth with IDD report similar aspirations as typically developing individuals (Stewart et al., 2010). They express excitement and apprehension about becoming an adult, and their major goals include getting a paid job, having a place of their own, as well as building and maintaining social relationships (Cooney, 2002; Cooney, Jahoda, Gumley, & Knott, 2006). But these aspirations are often met with significant barriers due to limited access to opportunities for meaningful engagement in economic and social activities (MacIntyre, 2014; Osgood, Foster, Flanagan, & Ruth, 2005) and the rapid disappearance of supports provided during the school years (Bouck & Joshi, 2016; Caton & Kagan, 2006; Schneider, Wedgewood, Llewelyn, & McConnell, 2006).
Aspirations, goals, and meanings attributed to becoming an adult differ significantly between some youth and their parents (Young et al., 2007; Young et al., 2008). The differences ascribed to what it means to become an adult extend to discrepancies between youth and parents in their estimates of feeling ready for changes to take place. Parents of youth with IDD have reported feeling ambivalent about viewing their children as independent adults (Isaacson, Cocks, & Netto, 2014), and doubtful about leaving decisions completely with the youth (Pilnick, Clegg, Murphy, & Almack, 2011). Parents also tend to underestimate their children's competencies (Dixon & Reddacliff, 2001; Jahoda, Wilson, Stalker, & Cairney, 2010). In essence, many parents perceive their youth with IDD as occupying a space between childhood and adulthood (Murphy et al., 2011). Conversely, although parental emotional and physical support is desirable (Cooney, 2002), youth expressed frustration and hurt in response to frequent parental supervision or overprotection (Isaacson et al., 2014; Jahoda & Markova, 2004; Mill, Mayes, & McConnell, 2010) and described desires for parental recognition of the ability to be more independent (Jahoda & Markova, 2004). These contrasting views of youths' abilities and needs for supports suggest it is crucial to learn about how youth and their parents jointly communicate and negotiate the construction of what it means to become an adult. The purpose of this study is to describe the joint processes of youth with IDD and their parents as they construct and organize various aspects of the youths' transition to adulthood, including education, career, and long-term relationships.
Very few studies have directly focused on the interactions between young adults with IDD and their parents. An early ethnographic study of adolescents and parents categorized the relationship as dependent, independent, and interdependent based on the level and manner of youths' dependence on their parents' guidance (Zetlin & Turner, 1985). For the dependent group, parents' management of youths' daily life was viewed as necessary and desirable by both of parents and youth. On the other hand, youth in the independent group were able to handle most of their lives by themselves. Different from the other two groups, the families in the interdependent category often had conflictual parent-child relationships, where the youth seemed to have inconsistent attitudes towards their parents' assistance. More recently, Keogh, Berneimer, and Guthrie (2004) interviewed young adults and their parents separately. The categories developed by Zetlin and Turner (1985) were used to group families. Keogh et al. (2004) suggested that young adults' cognitive level as well as their personality characteristics might contribute to their relationship with their families. A third study (Mill et al., 2010) used interviews with young adults with IDD to examine how they negotiate autonomy with their families. Three approaches were identified: passive, proactive, and defiant. These approaches, which parallel the dependent, independent, and interdependent relationships respectively, also showed a higher level of parent-child conflict in the defiant approach.
Greater understanding of the joint actions between the young adults with IDD and their parents is needed for two reasons. First, although young adults are the center of this transition process, their voice is still underrepresented in the literature. More attention has been directed to the family members (Chambers, Hughes, & Carter, 2004; Davies & Beamish, 2009) who are supporting youth. Youth with IDD may be reticent to criticize their parents' views and actions (Jahoda & Markova, 2004), which may inhibit the representation of their voices in research. Also, while parents' involvement in the transition to adulthood has been extensively addressed, it is unclear how parents and their children with IDD actively work together during the transition to adulthood. The existing knowledge seems to be informative in terms of the parents' hopes, concerns, and needs in providing support for their son or daughter, but little is known about the day-to-day goal-directed actions in which parents and youth engage.
Studies of interactions between parents and youth with IDD have used methods that gather information from one or both parties separately. This leaves the potential for missing information about how they engage together in constructing the transition to adulthood. In this investigation, we approach the transition to adulthood as a process involving the joint actions of young adults and their parents (Young et al., 2011). The framework we use for exploring how joint transition processes are enacted in parents and young adults' conversations is contextual action theory (Valach, Young, & Lynam, 2002; von Cranach & Valach, 1983; Young, Valach, & Domene, 2005).
Contextual action theory (Young, Valach, & Collin, 1996, 2002) has been used to study career development and other transition issues in families and other contexts (Young et al., 2006; Young et al., 2015). This theory is based on the notion that people understand their own and others' human behavior as goal-directed in the form of actions people engage in. This framework looks to the goals of actions rather than their causes for explanations. Contextual action theory identifies a relationship between action, project, and career. Action refers to people's intentional, goal-directed behavior that is occurring in the moment. Project refers to the series of actions that are constructed by individuals or socially to have a common goal over a mid-term length of time. For example, a person may engage in a series of actions to earn and save enough money to make a down payment on a home. Finally, when projects are engaged in, or anticipated being engaged in, over a long period of time and have a significant place in one's life, contextual action theory uses the term career. Clearly occupational projects are constructed as career for many people, but parenting is another long-term series of projects that many people construe as having meaning over the long term. Joint action and joint project are terms that reflect the social nature of goal-directed actions. When people engage in actions together there are often common goals as well as individual goals. For the purposes of this study, our focus is on the joint actions and joint projects of young adults with IDD and their parents.
Central to this approach is the view that actions are goal-directed phenomena that can be seen from the following three perspectives: (1) manifest behavior; (2) internal cognitive and affective processing for individuals and communication for joint actions, and, (3) the social constructions of the meaning of behavior. Thus, research using this approach gathers data that includes all three perspectives.
This study aims to describe the joint actions of young adults with IDD and their parents in the form of conversations they have together about the young person's transition to adulthood. In this study, we view the transition to adulthood as a joint, goal-directed project between parents and youth that is comprised of several joint actions over time. The following research questions are addressed: How do young adults with IDD and their parents jointly construct, articulate, and act on goals pertinent to the young adults' transition to adulthood? Can these joint actions be identified and described as joint projects?
The qualitative action-project method (Marshall, Zaidman-Zait, Domene, & Young, 2012; Young et al., 2005) was used to identify and describe the naturally occurring joint actions of parents and youth during the transition to adulthood. Informed by contextual action theory (Valach, Young, & Lynam, 2002; Young et al., 2005), the general procedure of action-project method consists of gathering data on three perspectives of action-manifest behavior, internal processes, and social meaning. Data collection and analysis occurred concurrently and involved identifying the parent-youth joint action from a video-recorded of their conversations as well as individual video-recall interviews (see Table 1).
Eight parent-youth dyads (N = 16) were recruited for this study from an urban area in western Canada. Participants were recruited through in-person presentations at parent groups and advertisements distributed through electronic mailing lists of local and regional organizations associated with families and young persons with IDD. A telephone screening interview was conducted with the parent and young adult separately to determine if they met the inclusion criteria, which included: (1) young adult age 18–35 years old who was diagnosed with an intellectual disability, (2) parent or primary caregiver in a parenting role residing in the home with the youth, (3) both participants able to converse in English, and (4) both interested in participating in the study. Additional demographic details included date of birth, number of years living in Canada, the language(s) spoken in their family home, employment and education situation, services received, and the extent to which the young adult needed help with activities of daily living.
Participants included two mother-daughter, three father-daughter, and three mother-son dyads. Six were biological parents, one adoptive parent, and one foster parent. Three parents were retired, three employed full-time, one “homemaker,” and one unemployed. Five of the parent participants were married, two were separated or divorced, and one did not specify marital status. The young adults ranged in age from 18-31 years (M = 24 years). All but one participant were born in Canada. English was the primary language spoken in all homes.
Parents reported on the status of their adult sons or daughters who were diagnosed with IDD. Diagnoses included mild and moderate intellectual disability, autism spectrum disorder, Asperger's syndrome, 22q deletion syndrome, fetal alcohol spectrum disorder, and Down syndrome. Two participants reported diagnoses related to their mental health, that is, mood disorders, schizophrenia, and obsessive-compulsive disorder, in addition to IDD. All young adults required little to no assistance with activities of daily living. Four young adults were employed part-time (two were in supported employment programs), three were unemployed, and one was in a day program. Two young adults had a high school education, two had some college courses, three were finishing high school, and one completed up to grade eight. Six participants lived at home with their parent(s) and two lived in attached suites semi-independently.
The research team was comprised of four university professors (two men and two women) who had expertise in counseling psychology, family studies, and IDD. In addition, a post-doctoral fellow who is a counseling psychologist assisted with the study along with seven graduate student research assistants. Two of the research assistants were doctoral students in counseling psychology, one was a doctoral student in special education, two were master's students in counseling psychology, and one was a master's student in human development, learning, and culture. Members of the research team had a range of experiences relevant to the topic of this study, including three who had professional experience working with individuals with IDD and several who had experience counseling typically developing individuals who were transitioning to adulthood.
The research assistants who conducted the interviews and did the initial data analysis received training from the co-investigators in contextual action theory and action-project method. Pairs of researchers met multiple times during data collection and analysis, and the research team met on a monthly, and at times, bi-monthly, schedule to analyze data and to discuss study procedures.
The procedures and analysis used in this study worked in tandem. However, for purposes of clarity of presentation, procedures are described here and analysis in a subsequent section. Table 2 provides an overview of how the data collection and analysis proceed.
The behavioral research ethics board of the university provided approval of the protocol before recruitment of participants began. A telephone intake interview was then conducted with prospective participants to (1) verify that they met the recruitment criteria and (2) collect relevant demographic information. Subsequent to the intake interview, a five-step process of data collection and analysis took place over a period of 3-10 months. This included two face-to-face meetings with seven of the eight participating dyads. One of the dyads did not return for the final face-to-face meeting, but participated in a telephone feedback interview instead. Each participant was provided with a $25.00 (CDN) honorarium for each meeting ($50.00 per dyad).
vData gathering session 1
After completing the informed consent, the meeting between the participants and two researchers was comprised of three video-recorded parts: the semi-structured introductory conversation, the conversation, and the video-recall interview.
The first part of Session 1 involved a semi-structured (warm-up) conversation between the participants and the research assistants. With one research assistant taking the lead, questions were asked of both the parent and the young adult. Questions posed to the young adult included, “How do you know when you are an adult?”, and, “What do you like about being an adult?” Questions posed to the parent included asking about their experience of the transition to adulthood process for their young adult child with IDD. Both participants were then asked about typical conversations they had together about the transition to adulthood for the young person. Once topics had been uncovered, participants were asked if they had an idea about what they would like to talk about between themselves in the next part of the interview. They were also informed that they did not have to choose any of the topics covered during the warm-up conversation and that they were free to change topics during the conversation. This process lasted from between 10.0 and 38.4 minutes with a mean length of 22.6 minutes.
The parent and youth dyad then had a joint conversation without the researchers present. The conversations (range = 9.4 to 17.5 minutes; M = 14.1 minutes), were audio and video recorded. Following the conversation, each participant separately engaged in a review of the video of the conversation with one of the researchers. Identified as the video-recall interview, the video of the conversation was played back and stopped approximately every minute, with participants being asked to describe what they were thinking and feeling during the section of the conversation just viewed. The mean length of the video-recall interviews was 46.4 minutes for parents (range = 25.2 to 75.5 minutes) and 35.8 minutes for young adults (range = 23.3 to 49.5 minutes). Finally, participants were reminded of subsequent steps in the research process and provided an honorarium. The audio recordings of all parts of the interview were then transcribed verbatim by a professional transcriptionist. Subsequently this part of the data was analyzed to produce a narrative summary for the clients. The analysis is described in a subsequent section.
Narrative feedback session
The purpose of the second data collection session was to share the narratives with the participants, to offer the opportunity to clarify or change any part of them, and to seek their agreement following any changes. Initially participants met separately with the same researcher who had conducted the video-recall portion of the first interview, and the individual narratives were read aloud. Participants were asked if they agreed with the narratives as presented and invited to provide feedback. Once both individual sessions were completed, the participants and researchers met together to review the joint narrative. Similarly, the joint narrative was read and the participants were asked whether they agreed with the narrative and the identification of the tentative joint project. All but one participant agreed with the narratives and the joint project. One participant expressed a semantic disagreement with the use of the word “goal” to identify what was being done during the conversation, though ultimately agreed once the function of the action-project method was explained in greater detail.
The analysis of the data followed the prescriptions laid out for the action-project method (Young et al., 2005). Contextual action theory provided a framework for the analysis of the data collected from three perspectives (manifest behavior, internal processes, and social meaning) following the procedures identified above.
Analysis of the first data collection session
Transcripts of the interviews were cleaned and analyzed by the pair of researchers who had collected the data. This systematic and iterative analysis process involved going between the transcript, the audio and video recording of the conversation and the video-recall interview, as well as discussion between the researchers themselves. Analysis involved the same one-minute segments that had been used during the video-recall portion of the interview. The researchers then began a line-by-line analysis of the conversation, coding “elements” of the conversation, or verbal behaviors, from a pre-established list of codes, such as “laughs,” “asks for clarification,” “states a plan,” and “expresses doubt”. The researchers then used these elements to identify each participant's functional steps, which included analysis from the video-recall interview when corresponding thoughts and feelings relevant to the conversation could be identified. These elements and functional steps were used to identify each participant's individual goal(s) during that minute of conversation and to identify the joint goal of the participants during that minute of conversation. In this way, the analysis accounted for both the manifest behavior and the internal cognitive and affective processes involved in the joint action. The third perspective was accounted for in the meaning attributed to the conversation by the participants during the conversation itself and the video-recall as well as the meaning they, the researchers, attributed to the conversation by being part of the same communication community.
The researchers used the data analysis to create two individual narratives, that is, one for the parent and another for the youth, and one joint written narrative for each dyad. Written in plain language and format, these narratives described what the participants were doing together during the conversation, that is, they identified and described their joint action. A “joint project”, or what the dyad appeared to be working on together in relation to the transition to adulthood for the young person, was inferred from the analysis of the conversation and video-recall interviews and the identification of the joint action. A tentative statement of the joint project was included in the dyad's narrative. The narratives were then discussed by the research team to ensure clarity and consistency with the data.
Individual case analysis
The final individual case analysis included describing the participants' demographic information, all elements from the analysis of the interview, requested changes from participants, and participants' comments and reflections made during the narrative feedback session. This individual case analysis was presented to the research team to generate constructs pertinent to the case. These constructs were then used for cross-case analyses.
The eight cases were randomly grouped into sets of three and one grouping of four cases such that all cases were included in two groupings. These groupings were then provided to all members of the research team for individual review before being analysed by the research team at team meetings. Similarities and differences in interpretations of the data between team members were discussed and noted. This procedure allowed for the identification of common themes and noteworthy differences across all cases through the cross-case analysis process.
A number of criteria ensures the credibility and trustworthiness of qualitative research (Lincoln & Guba, 1985; Guba & Lincoln, 1994). We collected data on three perspectives of action: manifest behavior, internal processes, and social meaning. An audit trail was kept to track information from all sources. Data were scrutinized and coding was discussed by all members of the team. Participants helped to confirm our interpretations of the observed conversations through their video-recall interviews.
Additionally, participant checks of the narratives helped confirm that the interpretation of the findings fit with their experiences. For some participants, the narratives were received as affirming and supportive. One mother responded to the narrative feedback with appreciation:
That's very good, very insightful. I like it. I really appreciate it. That's very affirming. Lots of things I'm trying to do, but I never feel I'm accomplishing it. So your observations are a confirmation or affirmation that I am accomplishing something.
Another mother found the joint narrative to be reassuring for her as a parent:
Well, I guess I have to say… that it's very nice to read the perceptions that you have of us because it makes me feel good, that maybe we are doing some things together well.
Her daughter said about her individual narrative: “it brings up lights again” and that it was “very cool.” In response to the joint narrative she said, “It is nice to see what other people see.”
This research described the joint goal-directed actions and projects of parents and their son or daughter with IDD during the youths' transition to adulthood. We were able to identify a project for each parent-youth dyad. The projects were inferred from the joint actions of each parent-youth dyad and are based on the meaning they attributed to the action, the internal and communicative processes used, and the specific behavior in which they engaged.
The researchers' iterative interactions with the data resulted in identifying two primary clusters for these dyads' projects: relationship and planning. In four dyads (three mother-son dyads and one mother-daughter dyad), the joint goal-directed actions specific to the relationship were more prominent than their conversation topics about the youths' self-sufficiency. In essence, the relationship was in the foreground of these joint projects. This relationship cluster was identified as having two sub-clusters, one in which the dyads were maintaining or strengthening their supportive relationship, and one in which the dyads were negotiating changes to the way they related to one another. Planning next steps was in the foreground of the joint actions of the second primary dyad cluster (two father-daughter dyads and one mother-daughter dyad). These dyads were engaged in discussing and acting on plans intended to help the youth become less reliant on parents and gain greater independence. In these dyads, the relationship was used to formulate and act on planning for the future. One father-daughter dyad focused on both their relationship and planning for the future.
Relationship in the Foreground
The topics of conversations between parents and youth engaged in relationship projects were about the young adults' plans for the future, or how to better prepare them to enter adulthood. However, parents and youths' actions in the conversations were oriented to their relationship with each other. Through their discussions of the young adults' transition to adulthood, the parents and youth connected with each other or addressed their disconnection with each other.
Three dyads maintained or strengthened a supportive parent-youth relationship in the context of discussions about the young adults' transition to adulthood. One mother-son dyad talked about the son's future together using the supportive relationship they had with each other. The other mother-son dyad engaged in a conversation which was motivated by the desire to communicate and connect with each other. Lastly, a mother-daughter dyad worked together to shape the daughter's future as a social person.
These three mothers displayed awareness of and accommodation to the youth's limitations. Although they were conscious of the research setting and occasionally re-directed the conversations to stay on the research topic, these mothers mostly sat back and allowed their youth to talk about what they wanted to express or were interested in working on, and responded by active listening and providing emotional support. Even in the dyad in which the youth had difficulties vocalizing clearly, his mother patiently let him finish his sentences and tried her best to communicate with him. During her video-recall interview this mother viewed her son enjoying the conversation and reflected, “I'm just happy because he is happy.” Later, she expressed her joy talking with her son about his favorite sport. She said, “I thought that was kind of interesting that we connected over that… They (sic) felt like a real conversation to me, like I felt like we were interacting in a new dimension, in a new realm, yeah, it felt good actually.”
When the youth took initiative to assert their autonomy or decide the direction of the conversations, the parents' reactions, as well as their reports in the video-recall interviews, reflected their efforts to empower the young adults and their willingness to facilitate and embrace the changes happening during their son or daughter's transition to adulthood. On some occasions, they spoke about their son or daughter's progress affectively, and seemed to reinforce the youth's positive perceptions of themselves. One mother asked her son where in the city he would want to live in the future, and her son surprised her by saying he might want to live abroad. She replied encouragingly and invited him to talk more about it. Later in the video-recall interview, the mother told the researcher, “He wants to work and travel. Everything is moving on to his goals.” Another mother said to her daughter, “I actually think that you have grown so much more after high school, learned so much more. It's amazing. I would just applaud you for that. I think you've become much more comfortable with yourself out of high school.”
The youth actively participated in the conversations with their mothers by sharing their desires for the future which included living by themselves, traveling overseas, improving their social lives, or better communicating with others. In the two mother-son dyads, the young adults expressed humor or reacted to the parents' humor. They seemed to enjoy laughing together with their mothers. Two young adults openly shared with their mothers how they viewed themselves, or their self-definitions. At the same time, they were aware of their mothers' possible reactions and consciously chose what to disclose. When a mother suggested an alumni group to her daughter who wants to socialize more, the daughter acknowledged the benefit of that group and other activities such as the Special Olympic, and said, “I also don't want to be part of that group, you know? I'm already categorized as a person with disabilities. I know that distinction that everyone puts me in. I want to move away from that, too.” She shared in her individual interview that she also had negative experience with two people in the group, but that was a personal matter and “I don't like to bring up everything that happens during my life.” The other youth told the researcher about his thoughts and feeling when his mother asked whether he liked to party, “I'm afraid if I say ‘yeah I like to party' she'd be like ‘Oh I didn't know you like to party!' Then I will have to say, ‘Oh I only like to party with my friends, not like with you there ‘cause it's embarrassing seeing you.'”
The interactions in these three parent-youth dyads, while parent-led, were more complementary and equitable compared to the other cases in the sample. The parents and the young adults demonstrated mutual respect and seemed to hold a shared view of what greater independence would look like for the young adults.
Two parent-youth dyads negotiated their relationship in the context of discussing the young adults' transition to adulthood. The mother-son dyad talked about the ways that the son was becoming an adult, including reaching a shared understanding of what it meant to be an adult. The father-daughter dyad discussed how the daughter could become more comfortable living separately from the family in order to be less reliant on her parent in the future.
In both cases, the parents expressed clear ideas about what was important for the young persons' adulthood or independence, such as receiving postsecondary education, finding employment, and/or independent living. They disclosed expectations about some degree of separateness from the young adults after they reached adulthood. The parents revealed or explicitly discussed how this process would impact the agenda for their own lives, including moving and retirement. Their strong opinions were also reflected in their efforts in leading the conversations in ways that were consistent with their focus on the transition. Although both parents broke down the issues for their son or daughter and helped them to think through issues by asking questions, they used leading questions, interrupted from time to time, and pointed out how the young adults' descriptions might not be accurate. For example, the father and daughter were discussing why the daughter could not stay in her basement suite instead of frequently going upstairs to her parents' home. The father wanted her to learn to live on her own.
Daughter: Because it's so like… I hear voices and then I think you know what…
Father: Because you are listening for voices.
Daughter: I hear my family upstairs talking…
Father: No, but you are listening, I know that, but you are like, you are listening in.
Daughter: No, no.
The parents' views of adulthood, as well as their plans for the youth, were not shared by the youth in these two families. The youth voiced their own experiences or opinions in the conversations, but these expressions were not fully acknowledged by the parents. One youth seemed to have a different priority than his mother, valuing his job more than the opportunity of completing a postsecondary program. He told the researcher during a video-recall interview, “Me and my mother have different eyes, different views into the future.” For the other youth, her fear of separation conflicted with her father's intention to set more individualized interpersonal boundaries. She reported to the researcher her feelings of being misunderstood. She described in her video-recall interview that, “He [father] keeps thinking that it's just a way for me to come upstairs. But it's really not what I am trying to do… I just want him to understand that. And I keep trying to tell him that it's not like I'm trying to get upstairs, but he doesn't like to listen to that sometimes.” Furthermore, although the issue of independent living focused more on emotions than life skills in this father-daughter dyad, they also engaged in explicit planning that made this dyad the only one that was engaged in both a relational and planning joint project (neither more prominent than the other).
Planning in the Foreground
Four parent-youth dyads engaged in projects that foregrounded planning, wherein the dyads directed the majority of their efforts toward thinking about and designing tangible steps toward increased self-sufficiency for the youth. These four projects include two other father-daughter dyads, one mother-daughter dyad, and one father-daughter dyad that included both relationship and planning themes. One father-daughter dyad explored different ways to help the daughter anticipate and prepare for her upcoming post-high school transition, the other father-daughter dyad identified caretaking challenges so that the daughter would be able to live safely in her own apartment during weekend stays. The mother-daughter dyad planned how to help the daughter get ready to move out on her own and rely less on her parents.
Jointly, these dyads used the relationship itself as a way to work on their planning agenda together. One relationship appeared more contentious as the parent and young adult expressed explicitly different desires around the youth's future level of independence, whereas the other dyads engaged in more exploration of the young adults' expectations of independence and then adopted a shared view around this perspective.
Parents in all four dyads worked with the youth to help them identify what needed to be the anticipated and planned next steps in practical and proactive ways. Each youth participated in the project formulation, even though they took initiative less frequently than their parents, and their responses were often brief. Two parents engaged in crafting roadmaps around the joint planning projects through the use of open-ended and clarifying questions. The youth would directly answer these questions in a succinct manner and appeared to freely provide responses that were in line with their desires. For example, a mother guided her daughter to think through how she manages her life when she lives on her own.
Mother: So let's say for example you're living on your own, completely. How will you, like right now the freezer is full of things that I've put in there. How would you handle that?
Daughter: See how many minutes to put it in for.
Mother: But how does the food get in the freezer? Like how, like how would that work out?
Daughter: (Shakes head)
Mother: Like... so do you think that that, so that's a bit of a concern then?
Daughter: A little bit.
Mother: How, like, how do we do it, you and I at home? Like, making sure there's food in the house. How do we it, how do we do it?
Daughter: Check the freezers and check the fridge, how much we have.
Mother: And what happens when there's something we don't have?
Daughter: We go shopping.
Mother: Do we make a list first?
Daughter: Yes, Yes.
Mother: So that's something that you could do, right? Having a list.
The parents took the lead in all the conversations. Nevertheless, the ways the dyads engaged with each other varied. In two dyads, the parents (both fathers) attempted to challenge or press the youth to establish concrete plans for the future. These plans ranged from general and long-term to anticipating and resolving potential roadblocks:
Father: Okay, so you're packing for your apartment, they don't know about the fact that you're planning to spend this weekend in your apartment so explain how that works.
Daughter: So I (unclear).
Daughter: And go there for a weekend.
Father: Uhuh, and have you ever done that before?
Father: And how did that go?
Daughter: Good, I didn't forget anything.
Father: That's good, you didn't forget anything, and suppose you had forgotten something?
Daughter: Then I just come back home.
Both youth in these dyads were hesitant to acquiesce to their father's pressure. One felt that she was misunderstood while the other took steps to assert her agency, explicitly through stopping topics of conversation she did not want the researchers hearing about further. One example was when the father asked his daughter how she would feel after leaving high school.
Daughter: It'll be kind of weird.
Father: What do you mean by weird?
Daughter: Like, it's going to be weird not seeing my friends every single day.
Father: Hmm. But there's some drama too, right? I mean, I know that there's, you won't see them…
Daughter: (Cross-talking): I don't think the college people [referring to the researchers] want to know about that.
Although all of these planning projects were guided by goals for some level of greater self-sufficiency, three dyads did not press for the establishment of separate residences with the youth living a life independent of their parents. These three dyads focused on constructing a level of independent living congruent with the youths' capabilities and the parents' desire to remain supportive and connected. The parents hoped the youths would freely make requests for help and assistance as part of the transition to increased self-sufficiency. One dyad appeared focused on the establishment of separate residences.
One aspect of family life that shaped two planning projects was the parallel transition that the parents were experiencing at the time of data collection. One parent was retiring and the other, remarrying. These parallel transitions infused the joint conversations about the youths' transitions with considerations of how the family was changing with respect to the parents' life changes.
In summary, these planning projects used a parent-led communication style to identify and proactively solve what to do next. The young adults directly answered their parents' questions although sometimes not fully agreeing with their parents' understanding of what the next steps in self-sufficiency might look like.
Resources Facilitating or Hindering Pursuit of the Projects
A number of resources that affected how parents participated with the young adult in project formulation emerged. These included (1) emotional resources (2) knowledge or expertise about IDD, and (3) ability to advocate for their youth. The emotional resources affected how parents cope with the changes and adjust their expectations. Being highly involved in planning their son or daughter's future, some parents seemed to experience worries or frustrations about lack of progress in fostering the young adult's independence. A mother expressed to the researcher one of her greatest concerns, “I want to stay connected to her [daughter], and it's important for her to stay connected with her family. We've experienced what it was like to be disconnected from her and it was disastrous. So, and I swore that I would never do that again.” Another father described to the researcher, “It's alternating frustration and hope that maybe we can build to something better and every time there is a glimmer of initiative or original communication or saying something new [from the daughter], uh, that's a joyful experience. But then that's laced with frustration of recycling old conversations.” These expressed emotions seemed to shape the emphases in their communication with their youth.
Also, lack of knowledge about IDD seemed to account for some challenges the parents experienced in understanding the young adults' limitations or setting suitable goals for the young adults. However, some parents seemed to be especially resourceful in seeking information and opportunities for the youth regarding education, employment, social services, and events. This additional information brought more possibilities in the parents' ability to advocate for the young adults moving towards their goals, and sometimes facilitated the young adults to voice their visions for the future.
For the young adults, resources external to the dyad contributed to their participation with their parents in the joint projects. These included (1) romantic partners and (2) governmental agencies, school, and workplace help. In two conversations parents explicitly investigated the perceived ability and willingness of the young adults' romantic partners to help with their independent-living projects. In this way, these romantic partners were resources that facilitated the young adults' ability to explore their independence.
The assistance, consideration, and support that the young adults received from institutional resources, that is, government, school, and work, also aided in their engagement in these projects. Young adults who received support from government workers, such as social workers were able to identify this support as a resource for their project. Young adults also received help from specific school programs that facilitated their postsecondary studies. Lastly, a mother–youth dyad expressed what having a supportive employer was like for the young adult, highlighting the employer's consideration for the young adult's limitations and through juxtaposing the current supportive workplace with previous employers who were less supportive.
There were also financial resources that helped both parents and young adults plan for the future. The families who participated in this research study did not report substantial barriers in terms of finances. When some degree of independent living was involved in the discussion, parents seemed to be in charge of making necessary arrangements for the young adults to have their own living space while staying close to the family.
The purpose of this study was to investigate how youth with IDD and their parents act jointly in their construction of the youths' transition to adulthood. The data revealed joint projects that focused on two related goals, namely relationships and planning for the future. In one set of dyads, the relationship was in the foreground of the joint project, while planning for the future was in the background as it formed the topic of conversations. In the other set of dyads, planning projects were in the foreground with participants using their relationship to work on their agenda together. One dyad worked simultaneously on their relationship and plans for the future. The findings extend research on the transition to adulthood by underscoring how parents and youth engage together to maintain or alter aspects of their relationship, convey their differences and similarities in views about the transition to adulthood, and manage the complexities of negotiating youths' self-sufficiency.
Extant research using typologies to conceptualized parent-youth relationships (Keogh et al., 2004; Mill et al., 2010; Zetlin & Turner, 1985) convey the idea that relationships are static. Additionally, the typological approach also tends to employ a deficit-based model, contrasting positive and negative qualities such as dependent upon or defiant with parents. We did not find the relationships of participants in this study were static or unchanging. This is likely because we used a methodology that permitted the observation of joint actions of young adults and parents and closely attending to their understandings of their relationships. Indeed, participants were aware of, and acted on their relationship, to either maintain or change the quality of the way they engaged with each other. The findings helped reveal the dynamics of relating that were unique to each dyad.
Although parents often took the lead in conversations and sometimes were directive in their agenda for the future, both parents and youth contributed to the joint project. This is an important feature of this study given young adults' views of their transition to adulthood are under-represented in the research literature. Young adults revealed how they maintained a sense of some control over the joint project by disclosing their desires or withholding information about themselves during video-recall interviews. An example of how young adults shaped their parents' relational actions is the way one participant suggested to her parent that the researchers did not want to hear about certain topics. Her suggestion altered the course of her father's questioning about plans for future education opportunities. These interpersonal strategies and self-descriptions during video-recall interviews represent volitional actions that signal self-determination (Wehmeyer, 2005). However, we observed the young adults' actions within their relationship with a parent. The actions and influence of both young adult and parent are considered, taking a slightly different approach from self-determination. Taking both into account simultaneously yields a transactional viewpoint (Kuczynski & De Mol, 2015; Sameroff, 2009) which is a unique feature of this investigation. A transactional view permits understanding of how the young adults' volitional actions shaped their parents' relational actions and vice versa. Both are shaping each other and their relationship with each other.
Joint planning projects varied in the length of the time perspective considered. Some plans were more immediate while others were associated with a more distant future. More immediate plans were related to upcoming concrete events such as leaving school. Extended futures were more general with the joint projects focused on the development of the steps to be learned in the more immediate future. These planning projects with extended futures were centered on the development of the young adults' procedural knowledge such as how to make grocery shopping lists. These planning projects, although shaped by both partners were clearly steered by the parents' efforts to help the young adults learn life skills.
The joint planning and relationship negotiation projects were oriented towards the young adults reducing their reliance on parents rather than gaining full self-sufficiency. The parents wanted to remain involved in their young adults' lives but not in overly protective ways as has been found in some investigations of the transition to adulthood (Bianco, Garrison-Wade, Tobin, & Lehmann, 2009; Docherty & Reid, 2009; Isaacson et al., 2014). These families were working towards ways to remain engaged with each other even in the relationships that were less harmonious.
The dyads in the sample were self-selected and participants received a small honorarium which may have been an incentive for their participation. The type of recruitment is not intended to generate a sample that is representative of a population. Further, we did not restrict the sample to ensure strict homogeneity of young adults' IDD. Although this sample was quite varied with regard to the young adults' severity of IDD and co-morbidity with mental illness, we found most of the families were fairly financially stable. Indeed, plans for young adults to live in a residence away from their parents were not reported to be inhibited by financial resources. The joint projects of families with fewer financial resources would probably unfold in different ways than those reported here.
We were not able to assess the joint projects over an extended period of time as in other studies with typically developing young adults (e.g., Young et al., 2008). It might be helpful to follow families over a longer period to fully understand the relational dynamics associated with the transition to adulthood.
Although the sample is small, the methodology extends the current literature on parent-young adult relationships by observing conversations rather than relying on self-reported information. The accompanying video-recall interviews ensured that participants' personal concerns and meanings of actions were not overlooked. Revealed are relationship dynamics focused on what the families are trying to do rather than explaining problems within relationships. The participants' positive responses to narrative feedback confirm the utility of the approach.
With regards to contributions to practice, this work points to the utility of practitioners focusing on supporting and reinforcing the relationship between transitioning youth and their parents or guardians. It identifies that they are engaged in joint, goal-directed actions together and describes what those actions involve. While it is clear that parents and youth engage in goal-directed projects vis-à-vis the transition to adulthood, practitioners can provide support by helping parents and youth identify their joint projects and facilitate them if conditions for successful projects are not present. The findings also suggest that professionals may find working as facilitators who can support the relationship and joint project of the youth and their parent is a useful strategy, particularly in conditions of scarce resources and limited formal support and service options.
The perspective illustrated in this research has important implications for parents and youth. The identification of joint projects recognizes that their actions together are not random or meaningless. They have goals, are engaged in certain ways, and depend on a variety of resources. This focus on goal-directed action aligns well with current practice approaches which emphasize self-determination and empowering individuals to make and act on choices rather than a service led, outcomes approach (Stainton, 2005). This study suggests that extending this approach beyond the individual to the broader personal network by supporting these relationships can be an effective means of facilitating the transition process. It is likely the quality of these relationships that will contribute to youths' ongoing success in transitioning to adulthood and establishing as independent and self-determined life as possible.
This study was supported by the Social Sciences and Humanities Research Council of Canada Insight Grant 435-2013-0158.