Abstract
Introduction
A recently developed service delivery model, called Partnering for Change, encourages collaboration between occupational therapists, educators and families, and aims to improve children’s participation across school, home and community settings. Partnering for Change has been successful in facilitating equitable access to services and eliminating wait lists; however, it could have a more significant impact through improved capacity-building with families. The purpose of this study is to describe the factors that therapists view as influencing the development of family–therapist relationships in Partnering for Change, and to explore their ideas to improve relationship-building.
Methods
Focus groups were completed with 15 occupational therapists who provided Partnering for Change school-based services. Qualitative description methodology and directed content analysis were utilized.
Results
Several factors were identified that influenced the development of family–therapist relationships including competing demands; consistency and availability; awareness, readiness and commitment; relationships with schools and educators; and sociodemographic characteristics. Increasing in-person interactions and awareness of occupational therapy services were suggested to improve relationship-building.
Conclusions
Therapists should consider innovative ways of overcoming competing demands, utilizing relationships with schools and educators, and participating in mentorship and communities of practice to address the current barriers of family–therapist relationships, and create better opportunities for collaboration.
Keywords
Introduction
Over the past decade, researchers at McMaster University in Ontario, Canada have developed, implemented and evaluated a school-based occupational therapy service delivery model called Partnering for Change (P4C), which aims to improve children’s general participation at school, home and in the community. P4C is a tiered service delivery model that emphasizes relationship-building and knowledge-translation as pillars for building the capacity of the individuals who interact with children every day (Missiuna et al., 2012). Rather than removing children from the classroom to provide “therapy,” occupational therapists collaborate with educators to support children who are experiencing difficulties participating at school. The principles of this service delivery model are to “Build
The success of this model depends on collaboration between occupational therapists, educators and families across three tiers of service. In the first tier, therapists collaborate with educators to establish classroom needs and develop universal strategies that promote the growth, development and participation of all children. Although therapists might provide general education to families at this tier (for example child development or self-regulation), individual families become involved only when the therapist has determined with the educator that more targeted or individualized approaches are required for specific children. At this point consent is obtained for services, which is the beginning of the family engagement process.
Family engagement is essential when working with children on an individualized basis. Not only are families the experts on their children, they also are the bridge between home and school. Families contribute insight and expertise about their child’s strengths and challenges. P4C depicts families as equal partners in this model, and in an ideal scenario occupational therapists implementing P4C build trusting and collaborative relationships with families to ensure children receive the support they require across home and school environments. However, therapists have previously noted that this is challenging (Missiuna et al., 2015). This study explored therapists’ perspectives on the factors that influence family–therapist relationship-building in P4C.
Literature review
In pediatric rehabilitation, family engagement is considered essential to the child generalizing learned skills to other contexts and maximally participating in daily life (King et al., 2017). Since the 1990s, family-centered services, family engagement and family–provider relationships have been discussed as foundational components of health service delivery (Bamm and Rosenbaum, 2008; Kalmanson and Seligman, 1992; Rosenbaum et al., 1998). There are many frameworks and definitions of family-centered service; CanChild, Centre for Childhood Disability Research, at McMaster University describes family-centered service as a philosophy and method of service delivery that recognizes families as the experts on their child’s needs, and promotes partnerships between families and clinicians (Bamm and Rosenbaum, 2008). Although most literature on family-centered service is not specific to the school setting, P4C highlights the importance of involving families to help translate knowledge across contexts and includes families as equal partners in the model (Missiuna et al., 2012). Despite this aim, occupational therapists who have delivered P4C in schools have not felt they have been able to build relationships with families the way they have with educators, limiting their ability to be truly family-centered (Missiuna et al., 2015).
This study is one component of a two-year implementation and evaluation study of P4C (Missiuna et al., 2015). After the first year of the study, occupational therapists reported experiencing challenges building relationships with families, which resulted in knowledge-translation being focused mainly on educators and reduced capacity-building with families (Missiuna et al., 2015). Additionally, some families receiving the P4C service reported that, although the services were helpful, they wanted to be more involved (Missiuna et al., 2015). It became apparent that therapists might have to work differently to reach families more effectively and to increase the benefits of these services. Thus, in year two of the implementation and evaluation study, the therapists were asked to engage in focus groups to explore these difficulties in further depth, and discuss what might improve the connections and relationships with families. Therefore, the present study explored the factors that therapists believed influenced their ability to build relationships with families when delivering P4C by asking:
What do occupational therapists delivering the P4C model perceive influences their ability to develop relationships and collaborate with families? What suggestions do occupational therapists have for improving relationships with families in the P4C model of service delivery?
Method
Study design
This study used qualitative description methodology, which allows for a comprehensive summary of the phenomenon under study from the perspectives of the participants (Sandelowski, 2000). This method suggests presenting the findings in language that is closely linked to the language used by the participants, discouraging high levels of inference and interpretation (Sandelowski, 2000). As such, the findings yield a rich description of the occupational therapists’ perspectives of challenges and successes when building relationships with families. Ethics approval for this study was received from the McMaster University Hamilton Integrated Research Ethics Board. Only data collected in the second year of the study was used for this inquiry because the questions specifically pertained to building relationships with families.
Participants
All participants in this study were registered occupational therapists trained to deliver P4C as part of the two-year implementation and evaluation study (Missiuna et al., 2015). Sampling was purposeful as all of the participants who participated in year two of the implementation and evaluation study were asked to participate in the year two focus groups. All occupational therapists engaged in the second year of the study chose to participate; however, one therapist became ill and was unable to participate in the focus group, resulting in 15 total participants.
The participants were trained in the P4C service delivery model and received ongoing mentoring and support throughout the two-year project (Pollock et al., 2017). Each occupational therapist provided P4C services 1 day per week in 2–4 schools, resulting in 40 schools receiving P4C in two health care regions in Ontario, Canada. The participants had practiced occupational therapy for between 1 and 41 years (median = 9 years) and had delivered school-based services for between 1 and 30 years (median = 7 years). Written informed consent was obtained from all participants.
Data collection
Focus groups were completed with occupational therapists who took part in the two-year P4C study toward the end of each school year. Therapists were grouped into each focus group based on the geographical region in which they delivered services. Two focus groups were completed, one with seven participants and another with eight participants. The focus groups were conducted by an individual who was not part of the research team at the time of data collection in an attempt to reduce social desirability bias. The focus groups were completed with a semi-structured interview guide, using open-ended questions such as: What has your experience been in terms of reaching parents and helping to build their capacity? and What might you suggest would make the connection with families easier? Focus groups were audio recorded and transcribed verbatim.
Data analysis
Data analysis was completed using directed content analysis (Hsieh and Shannon, 2005) and a template analysis style (Crabtree and Miller, 1992). This type of analysis combines use of a pre-existing coding system with inductive modifications to the system throughout the analysis process (Crabtree and Miller, 1992; Sandelowski, 2000). Content analysis using a directed approach is more structured than a conventional content analysis approach; however, its key tenets remain in the naturalistic paradigm (Hsieh and Shannon, 2005).
As an initial step, the first author read the focus group transcripts multiple times to become familiar with the nature of the data. The first author wrote memos in the margins of the transcripts to highlight important points and initial thoughts. The transcripts were then analyzed using pre-existing codes aimed at answering the research questions, for example barriers to family–therapist relationships. The pre-existing coding system aimed at discerning factors that influenced the family–therapist relationship, and what could be done in the future to strengthen these relationships in the P4C service delivery model. Additional data-derived codes were developed through immersion in the data and were more inductive in nature. This approach to analysis is reflective of “template analysis style” (Crabtree and Miller, 1992) and aligns with qualitative description methodology (Sandelowski, 2000). The pre-existing coding scheme and additional data-derived codes were applied to the focus group data by the primary author using QSR International’s NVivo 11 (2015) software. Preliminary findings were discussed with the research team through a peer review process, which resulted in some coding categories being combined and codes redefined. The transcripts were then re-coded based on the second coding scheme.
Findings were once again presented to the research team, which consisted of expert colleagues who designed the P4C model and colleagues who served as mentors to the occupational therapists throughout the two-year implementation and evaluation study, to ensure congruency and transparency, and to enhance overall credibility. Using a research team rather than an individual researcher also strengthened the dependability and confirmability of the findings (Letts et al., 2007). Additionally, the first author engaged in reflexivity through the use of reflexive journaling in an effort to enhance credibility and trustworthiness.
Findings
Analysis of the focus group data revealed several insights into the factors that influenced family–therapist relationships (see Table 1). These insights were organized into two descriptive categories: factors that influence the development of family–therapist relationships, and suggestions for improving these relationships.
Overview of findings.
Factors that influence the development of family–therapist relationships
Within this broader category, therapists discussed five main factors that influenced the development of family–therapist relationships in the P4C model: competing demands; consistency and availability; awareness, readiness and commitment; relationship with schools and educators; and sociodemographic factors.
Competing demands
The occupational therapists discussed many competing demands that influenced their ability to build relationships with the families of the children they were servicing. Some therapists found that they were more focused on building partnerships with schools and educators, instead of parents. “I … needed to be a bit more creative as to how to incorporate the parents because I think … they are a valuable piece of all of this” (OT10).
Others described lacking time to build relationships due to the many other demands of the job, which is further complicated by the time constraints that families face. “I find a lot around time is an issue, time on our part because we have so many kids to see but also time on [the families’] part” (OT2). In particular, the occupational therapists acknowledged it is especially difficult to connect with families who work in the daytime. One participant stated, “There are also a lot of issues with them being at work while we are in the school, so we don’t have that ability to actually connect with them like on the phone all the time (OT4).” Prioritizing relationships with educators, lack of time, and parents’ competing demands all influenced the occupational therapists’ efforts to connect with families and build relationships.
Consistency and availability
The occupational therapists reported they felt it was easier to connect and collaborate with families when services were provided consistently and predictably. Having a consistent day of the week that families could expect them to be at the school allowed therapists to build relationships more easily. One occupational therapist stated, “Being … there every Wednesday … then families know … you can call me at 8 o’clock in the morning I’ll be at the school, so the consistency is very helpful for connecting and collaborating with families” (OT1).
The occupational therapists also spoke about the benefit of being available to families throughout the school year, compared to other models of service in which the therapist is only available for the timeframe that the child is receiving services. The occupational therapists indicated that the P4C model allowed for increased availability, which led to ongoing and increased communication with families. In the old model you only have how many visits and we only … meet with the parents once and I don’t think that the communication is that open in the old model ‘cause you are there for such a short time. So with this model … it’s kind of nice ‘cause you are there with open communication for the year (OT7). Again I don’t know why I feel so strongly about this but I do feel if it had been kind of a narrower focus we would have been more visible … ‘cause week to week you’d be floating from one class to the next and to try to cover all your bases and see everybody and had it been a narrower population maybe that we were seeing I think we would have been a little bit more visible (OT15). I will say that at a smaller school where I felt the parents were more accessible in terms of drop off or pick up I did have a few more relationships with parents. At my larger school almost none other than the odd phone call I would have made with, you know, respect to something we were working on or the contact I made with all the parents in the beginning of the year as the new OT [occupational therapist] in that school, but even with that, many parents didn’t call me back (OT9).
Awareness, readiness and commitment
To build relationships, occupational therapists suggested families needed to be aware of the occupational therapy services that are offered, feel a sense of readiness to engage with these services and be committed to working collaboratively with the therapist. Additionally, occupational therapists indicated that they themselves needed to be committed to working with families, and believe that their efforts were worth the time required to engage with families.
Regarding awareness, one occupational therapist stated, “I don’t think that parents have been as involved as they possibly could have been and I don’t know if that’s because they just didn’t know” (OT11). In addition to awareness, families also need to have a certain level of readiness to engage in occupational therapy services. Many of the occupational therapists discussed how the change in the service delivery model led to earlier identification, which influenced the dynamic between therapists and families. Families were no longer put on wait lists for services and this may have had an influence on their readiness for services. I think that part of that is related to the fact that we are doing things a lot earlier now so the kids that go on a wait list for two years, [the families] have had two years to process that this student is having difficulties … whereas now we are … sometimes the first point of contact so the parents haven’t either processed it or they haven’t had time to accept it because a lot of the times [the students] are in kindergarten or … the issues are starting to kind of come into play and the parents aren’t either … ready to accept it or they haven’t really seen it or had an opportunity to understand that piece of it (OT2).
Not only do families need to have a certain level of readiness, but occupational therapists do as well. In P4C therapists now have the responsibility of identifying children who are experiencing challenges in school, and delivering this message to the family. This is a major role shift because previously other individuals, such as a teacher, first noted the child’s difficulties and then referred the child to occupational therapy. Even though parents are informed at the beginning of the school year that an occupational therapist will be present in their child’s classroom, and might notify parents if there are additional concerns based on their observations, families are sometimes still unprepared to process this information. With the old model the parents are already very much aware that their child is on the wait list and they are very anxious for their child to receive service. I find I’m having to do a sales pitch more with children that I am identifying and that tends to require more of the art of communication and the art of diplomacy and how you are communicating your observations and the school to be on board with … it certainly did add an element of stress to the position (OT5). Either they want to connect with you or … they don’t. I find there’s not really a middle ground …And the parents who do want to connect with you the knowledge-translation is wonderful … most of the time [parents] aren’t making contact even if we try to call them and leave a voicemail, but it’s nice to focus on the parents who do … [be]cause you know you have more of a lasting impact on the client (OT7).
Relationship with schools and educators
Therapists reported that their relationships with the schools they work in and the educators they work with helped to facilitate connections with families. Specifically, when there was a team approach to connecting with parents, the outcome was positive. I felt that my most effective way of connecting with families was through staff. That was always my best way of connecting because they had already discussed things or they went back to parents. It always seemed to work best when it was part of a team effort versus my trying to call people (OT15).
Despite instances where the school could have done more to support their efforts, most occupational therapists indicated that, when relationships with families were successful, educators played a major part facilitating the connections and ensuring collaboration.
Sociodemographic factors
Family- and school-specific sociodemographic factors reportedly had an influence on occupational therapists’ ability to connect and build relationships with parents. For example, when therapists do not speak the same first language as parents, it can be difficult to translate knowledge in ways that are useful for families: “a lot of times we actually have a language barrier that … creates a bit of an issue obviously for them understanding what we are actually doing with their child” (OT4).
Therapists indicated that the sociodemographic identity of the school has a significant influence on how the information is received and prioritized by families. At one of my schools, the families are quite transient, and again I think the school has issues with communications with parents, so I see that being reflected in how I am portraying or trying to implement P4C. And as well, I have another school that culturally things are very, very different so again the concerns of some of the students, the motor piece of it might not necessarily be the biggest issue. So not that the school or the families aren’t welcoming but it changes the level of understanding and it changes I guess the priority … there is definitely very, very different cultures economically, socially … culturally with the different schools that I’m working in (OT8).
Suggestions for improving family–therapist relationships
Therapists providing P4C services had many suggestions for improving relationships with families. Therapists spoke about organizing summer camps or groups specific to children with certain types of challenges, and hosting events when families were already coming to the school, such as during parent-interview nights. They indicated that these activities would allow for greater face-to-face interactions with families, which may lead to increased opportunities for family engagement. For example, one occupational therapist suggested a way to build connections with families prior to students starting their first year of school: One of my schools has … an early years program. It’s a culturally diverse area so moms or parents of pre-schoolers … have a room in the school so they get introduced to English and different fine motor activities, scissors, arts and crafts. So one of the teachers suggested that I touch base with the lady that runs the program and start to build a relationship there … they thought that that would be a really great opportunity to sort of bridge that early intervention piece (OT8).
Additionally, the occupational therapists discussed ways to increase families’ awareness of their services, through newsletters or attendance at information nights. At the start of the school year I made sure I had something in the newsletter, please contact me if you have questions, and I had a couple of parents who did call and because it was parent-initiated I have been able to have a bit more communication back and forth (OT13).
Discussion and implications
This study described what occupational therapists delivering the P4C model perceived to influence collaboration and relationship-building with families. Participants discussed five main factors: competing demands; consistency and availability; awareness, readiness and commitment; relationship with schools and educators; and sociodemographic factors. Additionally, the participants had suggestions for improving these relationships; specifically, increasing parents’ awareness of their presence in the school, and building on existing school events to meet with families in person. This discussion explores some of the factors noted to influence family–therapist relationships, builds on the suggestions made by the therapists in this study, and provides considerations for occupational therapists implementing P4C or similar models of service delivery.
Overcoming therapist and family demands
Many occupational therapists highlighted competing demands, their own or families’, as being a major barrier to connecting and collaborating with families. Therapists practicing in this model perceived other priorities or areas of focus, such as connecting with teachers, limited time available to connect with parents. They also acknowledged the demands of working families and the impact on parents’ ability to be present in the school environment. However, when asked what could be done to improve relationship-building, no suggestions were offered to manage these competing demands. Instead, therapists expressed that they valued face-to-face interactions with families and suggested ways to increase opportunities to connect in-person. It should be noted though that increasing expectations for in-person interactions might actually increase the demands placed on families.
A grounded theory study exploring parents’ attendance, participation and engagement in services delivered at a children’s treatment center found that families face many competing demands that influence their ability to attend and participate in services (Phoenix et al., 2019a, 2019b). The Phoenix Theory of Attendance, Participation and Engagement (Phoenix et al., 2019a, 2019b) demonstrates how factors such as the number of adults contributing to the child’s therapy, the number of children living in the home, access to transportation, full-time work and challenges finding child care for other children lead to difficulties attending and participating in therapy services. Although not directly generalizable to the school environment, it is plausible that similar demands also would apply to families who are asked to attend meetings with school-based therapists.
There may be other ways to connect with families. Educators have suggested strategies for improving parent involvement in general education that may be relevant to school-based occupational therapy services. For example, educators are using technology to improve communication and connection with families (Blau and Hameiri, 2012; Muir, 2012; Olmstead, 2013; Ozcinar and Ekizoglu, 2013; Snell et al., 2018; Tobolka, 2006). These types of interventions allow families to communicate with teachers and learn about their children’s school progress remotely (Tobolka, 2006), and are considered especially useful for families who find it difficult to connect with teachers during typical working hours (Snell et al., 2018). Currently, there is no evidence available to determine whether technology-based communication strategies would be effective at enhancing collaboration between occupational therapists and parents in the school setting; however, it is an idea worthy of exploration.
Utilizing relationships with schools and educators
Relationship-building with educators has been established as an essential ingredient of the P4C model (Missiuna et al., 2012). According to school-based occupational therapy literature, it is critical for therapists to spend time developing strong relationships with educators and to become a part of the school community to establish trust and clarify expectations (Case-Smith and Holland, 2009; Hasselbusch and Penman, 2008; Rens and Joosten, 2014; Swinth et al., 2007; Villeneuve, 2009). Therapists in this study acknowledged the importance of establishing relationships with the school and educators and spoke about how influential these relationships can be when working with families. Despite this, when asked how they might improve connections with families, therapists did not discuss utilizing these relationships to build trust with families.
The revised Theoretical Model of Parental Involvement outlines what influences parents’ decisions to become involved in their children’s education, and the types of parental involvement (Walker et al., 2005). Although this model is specific to parents’ involvement in general education, it may be relevant to consider for occupational therapy services that occur in the school setting. One component of this model that seems particularly relevant is parents’ perceptions of invitations for involvement from others. This factor refers to parents’ views regarding how the school, teacher and child feel about involving them in the education process. The model suggests that families who feel welcomed by the school, teacher and their child are more likely to become involved than families who do not feel welcomed (Walker et al., 2005). Occupational therapists should focus on ensuring that the invitation to be involved in general education is extended to involvement in occupational therapy services. This begins with ensuring a trusting relationship with the educators and becoming a part of the school community (Campbell et al., 2012).
Utilizing relationships with schools and educators may also serve well in circumstances where therapists’ consistency and availability is not sufficient for building relationships with families. Therapists in this study noted that their consistent weekly presence in the school allowed for greater availability and more opportunities to connect with families most of the time; however, there were certain circumstances where consistency and availability were ineffective at providing opportunities to connect with families, such as when the school was large and had a high volume of students. In these large schools the therapist’s availability is thinly spread, making them less consistently available. In these circumstances, it is even more important to utilize relationships with schools and educators to discuss appropriate plans of action for service delivery that best meet the needs of individual schools. By developing a more individualized action plan, the therapists could also begin to better understand the school’s sociodemographic culture and overall needs.
Training and mentorship to support the shift in the occupational therapist’s role
P4C involves a new role where therapists are typically the first to inform families about challenges a child may be experiencing. The occupational therapists in this study indicated that this is a change for both therapists and families. In more traditional models, the teacher typically refers children for occupational therapy services and families have time to process information about their child while waiting for services to begin. In the P4C model, therapists require a novel set of skills to initiate these difficult conversations with families, which reportedly induces feelings of stress for therapists.
The occupational therapists in this study historically worked in traditional models of school-based services (providing one-to-one support to children). As such, the research team developed a comprehensive, multifaceted training program (Pollock et al., 2017) to ensure therapists felt comfortable implementing P4C; however, the occupational therapists still reported stress with this shift in service delivery. Stress related to self-efficacy can be a barrier for practitioners who are experiencing changes in practice (Straus et al., 2009). Despite the multifaceted training program, therapists continued to require time to practice these skills and adapt to new roles. Ongoing mentorship and an established community of practice were vital for therapists to manage the significant changes in practice that occurred in this study (Pollock et al., 2017) and are recommended for clinicians adopting the P4C model of practice.
Not only is this model a shift for occupational therapists, but for families as well; this might be why therapists in this study spoke to a lack of family readiness and commitment related to these services. It is likely that families are also still learning and adapting to this new model of service delivery and perhaps needed more time to feel open to and comfortable with the substantial changes.
Future directions
Professional and societal demands on therapists and families are increasing (Luxton, 2011). Although face-to-face communication is still highly valued by therapists, unique methods are needed for therapists and families to connect. Qualitative research with therapists and families is required to explore ways these stakeholders can connect and collaborate despite competing demands. Additionally, future research might explore how occupational therapists can capitalize on their relationships with educators to create a system that is more inviting for families. Therapists and educators should be included as participants in these studies. It also is recommended that future studies involve interviews with families to discuss how readiness for service provision differs in a model where the occupational therapist is the first to identify when a child is experiencing challenges in development or participation in school.
Limitations
Focus groups do not always allow for all participants to have an active voice. Although the interviewer attempted to ensure all therapists participated, some did not contribute to the discussion and their voices may not be represented in the findings. The descriptive nature of this study provided important preliminary information; however, other methods such as individual interviews could provide a more nuanced and richer understanding. Member checking was not completed with participants to verify the data. Instead, the first author debriefed with expert colleagues who designed the P4C model and served as mentors throughout the two-year study. Finally, this study would have benefited from families’ perspectives. The family voice would have provided a richer understanding of the factors that influence the family–therapist relationship.
Conclusion
This study aimed to understand the factors that influence the development of family–therapist relationships and to explore suggestions for improving collaboration among families and occupational therapists in the P4C model. Competing demands; consistency and availability; awareness, readiness and commitment; relationship with schools and educators; and sociodemographic factors all reportedly influenced the development of family–therapist relationships in P4C. The participants made suggestions to enhance interactions with families; however, further research is required that explores the family voice regarding ways to build strong family–therapist relationships. Ultimately, these relationships will improve knowledge transfer efforts in P4C and support children’s participation at home, school and in the community.
Key findings
Many factors influence therapists’ ability to collaborate with families, including competing demands; consistency and availability; awareness, readiness and commitment; relationship with schools and educators; and sociodemographic factors. Innovative ideas are required for therapists and families to connect and build relationships, without increasing demands. Partnering for Change is a paradigm shift and parents, educators and therapists may need time and support to adjust to this new model.
What the study has added
This study has provided a greater understanding of the factors that influence family–therapist relationships in Partnering for Change from the perspectives of occupational therapists, and explores ways therapists can improve their relationships with families to support children’s participation in both home and community settings.
Footnotes
Acknowledgments
The authors are grateful to the Ontario Ministries of Health and Long-Term Care and Education for funding this study and to the partners and stakeholders who provided leadership and funding for the health services and contributed to the research activities, in particular the Central West and Hamilton Niagara Haldimand Brant Community Care Access Centres. The authors would also like to thank the health care decision-makers, educators and school communities, children and families, occupational therapists and team members who contributed to this study.
Research ethics
Ethical approval was obtained in a letter dated April 25, 2013. REB #: 13-022
Consent
All participants provided written informed consent to participate in focus groups for the study.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the Ontario Ministry of Health and Long-Term Care and the Ministry of Education (No. HLTC2972FL-2012-324).
Contributorship
Cheryl Missiuna, Nancy Pollock, Wenonah Campbell, Sandra Sahagian Whalen and Leah Dix conceptualized and ran the research project of which this study was a part, developed the research protocol, applied for ethical approval and organized data collection. Wenonah Campbell facilitated the focus groups. All authors contributed to the methodology of the project, and the analysis plan. Jennifer Kennedy completed the analysis, interpreted the findings and consulted the other authors throughout this process. Jennifer Kennedy wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved the final version.
