2017 Isabel Richard Student Paper Award Winner (Doctoral)
Establishing partnerships with parents in the provisions of children’s speech-language therapy services
By Michelle Phoenix, recipient of the 2017 Isabel Richard Student Paper Award (Doctoral Category)
Please note that this paper appears in its original form, in the language in which it was submitted; we have not edited it for style or grammar.
Introduction
Parent-clinician partnership and collaboration form the foundation of family-centred service (FCS) in children’s rehabilitation therapy. There is strong evidence to support the fact that implementation of FCS shows positive associations with access to care, child outcomes, family functioning and parent satisfaction with service (Bamm & Rosenbaum, 2008; Cunningham & Rosenbaum, 2014; Kuhlthau et al., 2011). FCS has been widely adopted across the world, illustrated within Canada by Accreditation Canada’s (2013) use of client and family-centred care as an integral component of evaluation , the College of Audiologists and Speech-Language Pathologists of Ontario’s (2014) identification of child and family-centred approach as a necessary element of children’s assessment, and the Ontario Association of Children’s Rehabilitation Services’ ([OACRS], 2010) key values that include engaging families and collaboration with partners. Even with strong evidence and endorsement, implementation of FCS has been challenging in the children’s therapy environment (Bamm & Rosenbaum, 2008; Phoenix & Vanderkaay, 2015), specifically with clinicians struggling to work collaboratively with parents (An & Palisano, 2014). Speech-language pathologists (SLP) and researchers are left asking an important question: “How can we make parents essential partners and collaborators in their children’s therapy?” The answer to this question will be presented using the three central tenants of FCS, which together support parent partnerships and collaboration: (i) parents are the experts on their child; (ii) each family is unique; and (iii) children develop best in a supportive family and community context (Rosenbaum, King, Law, King & Evans, 1998). Challenges to implementing these tenants are presented alongside opportunities to promote partnership with families that move beyond the direct therapist-parent interaction.
FCS Tenant 1. “Parents know their children best and want the best for their children” (Rosenbaum et al., 1998, p. 9)
The medical model of service views the professional as the expert on identifying and addressing the needs of the child, whereas the social model of disability views the child within their broader context and requires the expertise of parents (McLeod & Bleile, 2004). Parent involvement in goal setting is a key element in the provision of FCS and one way parents can share their expertise and collaborate with professionals in the therapy process (Brewer, Pollock, & Wright, 2014). Goal-setting is a common part of rehabilitation, thought to promote behavior change and improve communication between the client and the practitioner (Wade, 2009). Parent engagement in goal-setting increases collaboration between the parent and clinician based on shared observation of the child, and increased communication about priorities and achievable targets (Oein, Fallang, & Østensjø, 2010). Parents can identify goals that are meaningful to them and their family and important in the everyday life of the child (Oein et al., 2010). This is reflective of a social model of disability in which goals are more likely to target participation and social relationships than change at the body structure or function level (Mcleod & Bleile, 2004). Recognizing parent expertise and including parents in goal setting is one way SLPs can foster parent collaboration.
There are of course challenges to including parents in the goal-setting process. Clinicians can require time, training and organizational support to develop and use the skills needed to engage parents in collaborative goal-setting (Brewer et al, 2014; Kolehmainen et al., 2012). Parents can be overwhelmed and unprepared to set goals if they are given too much responsibility with inadequate support (Oien et al., 2010; Phoenix & Vanderkaay, 2015). A major tenant in FCS is allowing parents to determine how they want to be involved in therapy; therefore SLPs can still promote collaboration with parents by taking the lead in goal-setting if that is the parent’s desire. The key message is that SLPs should talk with families about their preferred roles in goal setting and the therapy process, and make every effort to engage families, being mindful of the ways in which parents wish to collaborate.
FCS tenant 2. “Families are different and unique” (Rosenbaum et al., 1998, p.9)
In order to provide FCS, and thereby develop partnerships with parents, SLPs must respect individual family members and form trusting relationships that are inclusive of diversity (Rosenbaum et al., 1998). Families are dissatisfied with their professional partnerships when they feel that professionals blame them for their child’s difficulties, or do not consult with them or believe them (Wodehouse & McGill, 2009). Families most frequently identified “partnerships” as being important in FCS and valued “the human qualities of professionals, such as kindness, concern, compassion, sensitivity, and approachability” over clinicians’ technical competence (Bamm & Rosenbaum, 2008, p. 1621). In comparison, professionals did not identify ‘partnerships’ as a main component of FCS and were primarily focused on education and counselling (Bamm & Rosenbaum, 2008). SLPs need to focus on their relationship with families because families prioritize this aspect of FCS and the therapist-family relationship is a key element to achieving client goals (King, 2009; King 2016).
It can be difficult for SLPs to develop a strong relationship with families when the family is not seen to be participating in the therapy process (Littell, Alexander, & Reynolds, 2001). It may appear that parents are not participating or engaged if they disagree with the therapy approach or do not attend regularly, and in some cases families may be discharged due to non-attendance (Arrigo, Ziviani, Poulsen, Copely, & King, 2016; Littell et al., 2001; Littell et al., 2001; Phoenix, 2016). Families who have difficulty with attendance and engagement have been labelled ‘hard-to-reach’ (Boag-Munroe & Evangelou, 2012). Researchers and service providers have viewed these families with blame and judgment, which compromises the trusting and respectful relationship required to build collaboration (Barrett; 2008). When SLPs and families have a relationship that empowers families to express differences of opinions and describe their challenges with attendance, these ‘barriers to collaboration’ may be used as discussion points in the formation of a therapy approach that fits the family’s unique goals, desires, and life context. Two models of pediatric service delivery that are flexible and responsive to families’ differences can be used by SLPs to promote collaborative work with families: the “Model of family-professional collaboration: a four step model of service delivery” (An & Palisano, 2014) and “Making Alternative Therapy Choices Happen (MATCH): a care path to promote engagement with hard-to-reach families” (Phoenix & Rosenbaum, 2015). Although these models of service delivery were developed using evidence, neither has been evaluated rigorously enough to determine effectiveness. What can be stated with confidence is that SLPs can establish a partnership with families when they are respectful, develop trust and are responsive to the uniqueness of each child and family.
FCS Tenant 3. “Optimal child functioning occurs within a supportive family and community context: The child is affected by the stress and coping of other family members” (Rosenbaum et al., 1998, p.9)
The World Health Organization’s (2002) International Classification of Functioning, Disability and Health draws attention to the personal and environmental factors that are important in understanding an individuals’ health and participation. The family is recognized as children’s natural environment, and the health and wellbeing of parents are tied to the development of their child (Rosenbaum & Gorter, 2012). Within FCS the psychosocial needs of all family members must be considered (Rosenbaum et al., 1998), especially as we place expectations on parents to partner and collaborate in the therapy process. Parents raising children with disabilities are at increased risk for experiencing long-term physical and mental health challenges (e.g., depression), which increase the likelihood that children with chronic physical illness will experience anxiety or depression (Brehaut et al., 2011; Ferro & Boyle, 2015; Lach et al., 2009). The following ethical questions are raised by Reddihough and Davis (2016) regarding whether child health clinicians have an ethical responsibility to identify the mental health and support needs of parents. Do professionals have the expertise to identify mental health concerns and appropriate recommendations or resources? Which professional on a team is required to ask the parents about their needs? What about parent privacy and their potential unwillingness to disclose mental health issues? On the surface, it appears obvious that partnering with families includes recognizing parents’ challenges related to physical and mental health, given that these are likely to impact parents’ involvement in therapy and the child’s development. However, there are many ethical and pragmatic complexities for SLPs to consider when engaging in this area of practice.
Although there is strong evidence to indicate that the parents with whom SLPs work are likely to experience physical and mental health issues McConnell et al. (2013) remind researchers and practitioners that parents of children with disabilities can also exhibit resilience and positive experiences of raising their children. Strengths-based approaches to intervention can help SLPs to identify the strengths within the family and community context, and use those to promote child development. The Solution-Focused Coaching model for pediatric rehabilitation practice was developed to help practitioners implement FCS by developing a relationship with parents oriented around their child and family strengths and hopes for the future (Baldwin et al. 2013). Although there is low to moderate evidence for the use of coaching in pediatric occupational therapy practice the generalizability to SLP practice is unknown (Kessler & Graham, 2015) and the transdisciplinary Solution-Focused Coaching model has yet to be evaluated (Baldwin et al., 2013).
Organizational partnerships with families to promote collaboration in therapy services
So far this paper has focused on ways SLPs can promote partnership and collaboration in the individual work they do with families by implementing the central components of FCS. The organizational context has been considered only to the degree that it supports or restricts SLPs’ attempts to implement FCS, e.g., by providing time and training to learn about and implement goal setting with families or implement models of service that support FCS. However, SLPs may also support parent collaboration at the organizational level by advocating for parent involvement in strategic planning processes or on advisory boards. Parents can be encouraged to partner in the therapy process by sharing their stories, concerns and ideas with provincial initiatives such as the OACRS (2010) Family Advisory Council or the Ministry of Health and Long-Term Care (2016) Patient and Family Advisory Council, or national initiatives such as Patients Canada (2014) that encourage patients to share information with the Ministers of Health to champion change in health care. When SLPs are informed about these avenues for parent partnership they can share information with families in order to support family empowerment and advocacy.
Research to promote partnership and collaboration with families
Finally, parent partnerships and collaboration can be strengthened by the research that SLPs do and the engagement of families as part of the research team. As one personal example, my doctoral research is a qualitative grounded theory study that aims to answer the question: “How do parents of children with disabilities participate and engage in their child’s therapy?”. Approximately half of the sample is comprised of families who are labelled as ‘hard-to-reach’ as indicated by missed appointments, frequent cancellations or declining services that are offered to them. Although this work is in progress, families have consistently said they are engaged in the therapy process when (i) they are working on skills and issues that matter to them, (ii) they trust and have a relationship with the therapist, and (iii) they feel good about the therapy. Families also report feeling overwhelmed and sometimes unable to attend given the pragmatic life barriers (e.g., travel and childcare) that can impact service use. This work will help to disentangle attendance, participation and engagement and can hopefully be used by SLPs to strengthen partnerships with families and advocate with them for services that best meet their needs.
In Canada and across the world patient and family engagement in research is gaining momentum (INVOLVE, 2015; Patient Centered Outcomes Research Institute, 2016). The Canadian Institutes of Health Research (2016) funds the Strategy for Patient-Oriented Research and states “Patient-oriented research refers to a continuum of research that engages patients as partners, focusses on patient-identified priorities and improves patient outcomes”. SLP researchers can partner with parents to develop meaningful research questions, tailor research processes or interventions, meaningfully interpret results and move these into use (Brett et al., 2014). Engaging parents in the research process has been referred to as Family-Centred Research because of the parallels with FCS that include recognizing parent expertise and collaborating with parents as equal partners (Rosenbaum 2011). Philosophical, pragmatic and regulatory arguments have been used to support the position that family involvement, and to a lesser extent service provider involvement, are crucial in all stages of childhood disability research (Morris et al., 2011). Unfortunately, Family-Centred Research has not yet been evaluated to the same extent as FCS and this has been raised more generally as a criticism of patient and public involvement in research (Brett et al., 2014; Staniszewska et al., 2008). Given the increased cost and time needed to engage families, and the threat that families may be involved in a tokenistic manner, or that a biased sample of families may be involved, there is certainly a need for more research to inform how families are engaged and whether engagement is associated with positive outcomes.
In summary, SLPs can promote partnership with parents by applying the principles of FCS in therapy provision and by encouraging parents to collaborate with organizations, policy makers and researchers to develop services that best meet their unique child and family needs. SLPs should provide opportunities for parent involvement in goal setting and therapy planning, build trusting and respectful relationships with families, and recognize parents’ own physical and mental health concerns. This can be a difficult task given organizational constraints and lack of evidence-based models to support these practices. There are also ethical considerations related to service provision for hard-to-reach families and parents with mental health concerns. Therefore, SLPs may face pragmatic and ethical challenges when trying to engage parents as partners. True partnership will require that SLPs implement the principles of FCS in their work with families and broadly encourage parents to partner with organizations and researchers to create evidence-based children’s therapy programs that value and support parental-SLP collaboration.
References
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Michelle Phoenix completed her master of health science in speech-language pathology at the University of Toronto and is currently pursuing a PhD in rehabilitation science at McMaster University. She practices clinically at KidsAbility, a children’s treatment centre in the Waterloo Region. Through clinical work and research Michelle has developed a passion for understanding how parents of children with disabilities engage in their child’s therapy services. In particular, her work focuses on parents who have a history of missed or cancelled appointments. This includes consideration of barriers to access at the system level, in addition to the family barriers related to parents’ physical and mental health, family composition, and logistic barriers. The concepts of family-centred service, resilience and ethics are woven throughout Michelle’s work. This research has been done with CanChild Centre for Childhood Disability Research and is funded by the Canadian Institute of Health Research and the Canadian Child Health Clinician Scientist Program.
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