Child: care, health and development

bs_bs_banner Child: care, health and development Case Report doi:10.1111/cch.12194 Development and implementation of a paediatric rehabilitation care path for hard-to-reach families: a case report M. Phoenix* and P. Rosenbaum* *CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada KidsAbility Centre for Child Development, Waterloo, ON, Canada, and Department of Pediatrics, McMaster University, Hamilton, ON, Canada Accepted for publication 21 August 2014 Keywords childhood disability, engagement, hard-to-reach, parents, paediatric rehabilitation knowledge brokering Correspondence: Michelle Phoenix, Institute for Applied Health Sciences, McMaster University, Faculty of Health Sciences, 1400 Main St. West, Room 403, Hamilton, ON, Canada L8S 1C7 E-mail: phoenimp@mcmaster.ca Abstract Service providers, policy makers and researchers are increasingly concerned with service provisions for hard-to-reach families. These are defined as families who are eligible for a service, but are difficult for service providers to identify or engage. In our setting, hard-to-reach families were those who missed appointments without prior notice, a problem that was inefficient for the organization, frustrating for clinicians and did not meet child or family needs. This case report describes the development of a care path to promote engagement with hard-to-reach families (MATCH: Making Alternative Therapy Choices Happen) and its adoption among clinicians within a community-based paediatric rehabilitation centre in Ontario, Canada. The care path was developed and implemented at a pilot site at KidsAbility Centre for Child Development (KidsAbility), which allowed us to tailor the care path using clinician input via questionnaires, and to monitor use of the care path. Following pilot implementation clinicians reported being satisfied with the approach and perceived improved child and family outcomes. The care path was expanded to four service sites using a Knowledge Brokering model. After training, clinicians reported a good understanding of the care path: 87% felt that they would have an opportunity to use it within six months, however only 68% felt ready to use it. Challenges to offering MATCH and continuing training preferences were investigated. The MATCH care path illustrates a practical application of the principles of best-practice for engaging hard-to-reach families, tailored for a specific paediatric rehabilitation setting. Continued research is planned to further define the hard-to-reach families within paediatric rehabilitation, determine how hard-to-reach families view engagement in services, and evaluate the effectiveness of MATCH implementation in reducing missed appointments and promoting family engagement in paediatric rehabilitation services. Background Hard-to-reach families are defined as people who are eligible for assistance, but who do not usually take up the help available, or are difficult for service providers to identify and engage (Cortis 2012, p. 1, 1). Conversely, services may be hard-toaccess, indicating that characteristics of families or individuals are not the only factors that determine service use (Barrett 2008; Coe et al. 2008; Winkworth et al. 2010; Boag-Munroe & Evangelou 2012). There are often diverse and complex reasons why a family may not access or engage in education, health or social services 2014 John Wiley & Sons Ltd 1

2 M. Phoenix and P. Rosenbaum (Boag-Munroe & Evangelou 2012; Arai et al. 2013); and families are less likely to use services when faced with an increased number of barriers (Maharaj et al. 2014). Parents of children with disabilities are at increased risk of facing barriers that could limit their use of paediatric rehabilitation services. For example, parents of children with disabilities are more likely to have impaired physical and mental health (Brehaut et al. 2004; Brehaut et al. 2011), live in poverty (Emerson & Hatton 2007; Petrenchik 2008) and face social exclusion (Valentine 2001; Cushing 2003). Inequality of access to services can compromise their health and well-being (Galabuzi 2004). Paediatric rehabilitation services aim to improve the health and well-being of children and families. Outcomes following developmental rehabilitation therapies may include: improved self-care and mobility (Chen et al. 2004), development of functional skills (Darrah et al. 2011), improved communication (Pennington et al. 2005), and increased participation (Law 2002). Increased participation, improved quality of life and parental support have been identified as paediatric therapy goals (King et al. 2002; Bamm & Rosenbaum 2008). Yet hardto-reach families may not access these services and miss these potential benefits. The purpose of this case report is to describe the processes of development of a care path for hard-to-reach families (MATCH: Making Alternative Therapy Choices Happen) and its adoption among clinicians within a paediatric rehabilitation centre. Case description The setting and challenge of engaging hard-to-reach families KidsAbility is a regional children s treatment centre in Ontario, Canada with five satellite programs providing early intervention services (e.g. physical therapy, occupational therapy, speechlanguage pathology) to approximately 5000 children and families per year. Often these services are offered through in-centre appointments, with children (aged birth to 18) and their parents coming to the centre. Between April 2009 and March 2010 clients missed 4143 appointments, 1367 of which were missed without prior notification (Watson, 2011, unpublished report). Therapy appointments were missed more often than assessments and families involved in more than one service were more likely to miss appointments than clients involved with a single discipline. This information was drawn from centrebased statistics, and not individual client records, and it is therefore not possible to determine details regarding the make-up of the families who missed appointments (e.g. marital status, child diagnosis, or family language). Assuming that 30 minutes were spent planning and then documenting each missed appointment, 0.5 1 FTE would have been used each year to manage these missed appointments. This practice was inefficient, frustrating for clinicians and failed to meet child or family needs. The opportunity to develop a care path to engage hard-to-reach families In September 2010, KidsAbility granted the lead author (MP) time to review the literature on service provision for hard-toreach families and develop a proposed evidence-based care path that could be used within KidsAbility to promote engagement with hard-to-reach families. The following types of evidence were reviewed: peer-reviewed published papers (e.g. a systematic review of the strategies to assist hard-to-reach families; Boag-Munroe & Evangelou 2012) and grey literature (e.g. policy documents; Barrett 2008). MP used these resources to develop the proposed care path titled MATCH: Making Alternative Therapy Choices Happen (Fig. 1) and to summarize the barriers to participation and key elements of best practice for engaging hard-to-reach families (Table 1). When the recommended practices for engaging hard-to-reach families were compared to current KidsAbility practices, differences became apparent, indicating the need for both the care path and clinician training to promote adoption (Appendix). Ethics The Hamilton Integrated Research Ethics Board determined this work was program evaluation and REB submission was not required. The MATCH pilot phase MATCH was piloted at one KidsAbility site between January and December, 2012. Fifteen pilot site clinicians received information about the proposed MATCH care-path during a program meeting, after which 14 clinicians completed a questionnaire to identify hard-to-reach family factors and engagement strategies. Clinicians identified a variety of reasons a family might be hard to reach (Table 2) and described 25 strategies they had used to promote the engagement of hard-toreach families (Table 3). Pilot results were used to tailor the MATCH care path for a rehabilitation context using local clinician knowledge.

Reaching hard-to-reach families 3 Figure 1. MATCH care path. Table 1. Barriers to participation and key elements of best-practice to engaging hard to reach families Barriers to participation may include but are not limited to: High parental stress, anxiety, depression Families in poverty Family composition; e.g. young parents, single parents, lack of childcare for siblings Transportation challenges Culture, language or literacy barriers Family is not yet ready to change (e.g. adjusting to child s delay or diagnosis) Lack of trust between family and service provider Elements of best-practice (MATCH principles) include: Begin where the family is comfortable Follow the family s lead and be persistent The primary service provider should have the closest relationship with the client Partner with other involved agencies Initially, avoid groups Avoid written communication Recognize that motivation fluctuates All pilot site clinicians could offer the MATCH care-path, but participation was not mandated. Five clinicians and 10 clients participated in the MATCH pilot phase and the care path was used in a variety of ways. These included collaborating with Family and Children s Services for scheduling and transportation, seeing a child at daycare, and decreasing the frequency of appointments. Two clinicians wrote reports of their experiences using MATCH that demonstrated the diversity across families that could use the program and how MATCH could be applied. The expanded program phase In May 2013, the MATCH care path was expanded so that clinicians at four (of five) KidsAbility sites could offer this service. To support the expanded use of this care path a knowledge broker (KB) model was used (Russell et al. 2010; Conklin et al. 2013; Waring et al. 2013). In this model, a volunteer clinician from each site served as a KB, someone who received information about the MATCH care path and then trained all clinicians at their site, offered ongoing monitoring and support of the program. An electronic questionnaire, developed by MP and PR and piloted by 2 clinicians, was completed by 42 of 61 clinicians Table 2. Reasons a family might be hard to reach identified by clinicians at the pilot site Child Specific Parent specific Family specific Organizational lack of change in the child significant child needs (e.g. require 1:1 support, medically fragile) language barriers parents have different views about child needs parents are emotionally overwhelmed lack trust in professionals previous bad experience with another caregiver cognitive level of parent (e.g. memory difficulties) parental mental health social anxiety (e.g. limit group participation) motivational factors/readiness to make therapy a priority difficulties getting organized substance abuse no care for other children single parent homelessness (or living in a shelter) difficult to contact because phone number is often changing limited outside family support financial barriers for private assessments (e.g. psychological assessment) waitlists transportation hours of operation (family work schedules)

4 M. Phoenix and P. Rosenbaum Table 3. Strategies for engagement previously used by clinicians at the pilot site Specific tangible clinician supports Recommended therapy models Principles of practice provide bus tickets flexible scheduling (e.g. early morning, evening appointments) consistent timing of appointments all disciplines see the child at the same time reminder phone calls on the day of the appointments provide copy of scheduled appointments to childcare allow siblings to participate and view therapy written reminders/ parent recorded recommendations in mobile device offer ongoing social work service recommending community based weekend programs Family and Children s services mandated program consult to childcare decrease frequency of appointments referral to other models of therapy that required less direct parental support (e.g. KidsAbility school or day care consultations) time to listen to the family meet the family where they are comfortable (e.g. Ontario Early Years Centre) child makes progress that parent notices clarity in communication take increased time to explain strategies build rapport and trusting relationship first use written goals choose fewer goals ask directly about anticipated participation and barriers polled at three KidsAbility sites. Responses indicated that 92% of the respondents had received training about MATCH at a program meeting. Overall, clinicians highly rated their understanding of MATCH eligibility, purpose, and how to use MATCH (Fig. 2); 87% felt they would have an opportunity to use MATCH within 6 months; however only 68% felt ready to use MATCH. The implementation barrier identified most often (35%) was difficulty contacting their client. Clinicians (68%) most commonly identified how others have used MATCH as the area of education needed to promote MATCH implementation. The majority of clinicians (56% and 45%) preferred to receive MATCH information through open discussion at a staff meeting or going to ask their KB, respectively. These results were used to identify continuing challenges to implementation, kinds of support that clinicians wanted, and how they wanted to receive this support. Case discussion: implications for clinical work and research This project was initiated based on the high number of missed therapy appointments and a desire to increase engagement with hard-to-reach families. In concordance with the literature (e.g. Barrett 2008; Boag-Munroe & Evangelou 2012), clinicians identified a diverse set of reasons that families may be hard to reach. Alarmingly, it is most often families facing multiple challenges those most in need of a service that are the least likely to be able to use it (Cortis 2012; Maharaj et al. 2014). When families do not use paediatric rehabilitation services they miss opportunities to develop the skills, receive information and support that ultimately promote social participation and quality of life (King Figure 2. Clinician questionnaire results re: (i) understanding of MATCH; (ii) opportunity to use MATCH; and (iii) readiness to use MATCH (n = 42). In all graphs the y-axis represents the number of clinicians and the x-axis represents clinicians ratings on a 5-point scale from 1 = Do not agree at all to 5 = Completely agree.

Reaching hard-to-reach families 5 et al. 2002). This case report describes the development and adoption of a care path to promote engagement of hard-toreach families in paediatric rehabilitation services using KBs. KBs have been used to share information, change clinician understanding and behaviour within paediatric rehabilitation and hospital settings (Russell et al. 2010; Conklin et al. 2013; Waring et al. 2013). The KBs at KidsAbility were instrumental in providing training and support to clinicians at their service site, after which clinicians reported a good understanding of the MATCH care path. It was critical also to evaluate the barriers to care path use, clinician training needs and preferences. Further research in this area is essential to determine systematically: (i) which families are most likely to miss paediatric rehabilitation appointments, (ii) the hard-to-reach families perspectives of engagement in paediatric rehabilitation, and (iii) the effectiveness of the MATCH care path implementation in reducing missed appointments and promoting engagement with hard-to-reach families. Such studies are being planned at present. Key messages There is significant need to investigate the best practices for engaging hard-to-reach families within paediatric rehabilitation, given that families of children with disabilities likely face multiple challenges that increase their chances of missing appointments. Using KBs, clinicians could understand the MATCH care path, but requested information about how others had used it before feeling ready to use it themselves. Implementation takes time and can be supported by the use of knowledge translation theory and interventions. Funding The pilot funding was provided by the Bridgeway Foundation of Cambridge, Ontario. MP is supported by a Canadian Institutes of Health Research doctoral award and by a Canadian Child Health Clinician Scientist Program award. PR holds a CIHR Tier I Canada Research Chair in Childhood Disability, Mentoring and Dissemination. Acknowledgements MP and PR wish to thank clients, clinicians, and leadership within KidsAbility for participating in this work. References Arai, L., Stapley, S. & Roberts, H. (2013) Did not attends in children 0 10: a scoping review. Child: Care, Health and Development. doi: 10.1111/cch.12111. [Epub ahead of print] Bamm, E. L. & Rosenbaum, P. (2008) Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation, 89, 1618 1624. Barrett, H. (2008) Hard to Reach Families Engagement in the Voluntary and Community Sector. Family and Parenting Institute, London. Boag-Munroe, G. & Evangelou, M. (2012) From hard to reach to how to reach: a systematic review of the literature on hard-to-reach families. Research Papers in Education, 27, 209 239. doi: 10.1080/ 02671522.2010.509515. Brehaut, J. C., Garner, R. E., Miller, A. R., Lach, L. M., Klassen, A. F., Rosenbaum, P. L. & Kohen, D. E. (2011) Changes over time in the health of caregivers of children with health problems: growth-curve findings from a 10-year Canadian population-based study. American Journal of Public Health, 101, 2308 2316. doi: 10.2105/AJPH.2011.300298. Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., O Donnell, M. & Rosenbaum, P. (2004) The health of primary caregivers of children with cerebral palsy: how does it compare with that of other canadian caregivers? Pediatrics, 114, e182 e191. Chen, C. C., Heinemann, A. W., Bode, R. K., Granger, C. V. & Mallinson, T. (2004) Impact of pediatric rehabilitation services on children s functional outcomes. American Journal of Occupational Therapy, 58, 44 53. Coe, C., Gibson, A., Spencer, N. & Stuttaford, M. (2008) Sure start: voices of the hard-to-reach. Child: Care, Health and Development, 34, 447 453. doi: 10.1111/j.1365-2214.2008.00816.x. Conklin, J., Lusk, E., Harris, M. & Stolee, P. (2013) Knowledge brokers in a knowledge network: the case of Seniors Health Research Transfer Network knowledge brokers. Implementation Science, 8, 7 (9 January 2013). doi: 10.1186/1748-5908-8-7. Cortis, N. (2012) Overlooked and under-served? Promoting service use and engagement among hard-to-reach populations. International Journal of Social Welfare, 21, 351 360. doi: 10.1111/ j.1468-2397.2011.00825.x. Cushing, P. (2003) Policy approaches to framing social inclusion and social exclusion: an overview. L Institut Roeher Institute. Darrah, J., Law, M. C., Pollock, N., Wilson, B., Russell, D. J., Walter, S. D., Rosenbaum, P. & Galuppi, B. (2011) Context therapy: a new intervention approach for children with cerebral palsy. Developmental Medicine and Child Neurology, 53, 615 620. Emerson, E. & Hatton, C. (2007) The socio-economic circumstances of children at risk of disability in Britain. Disability & Society, 22, 563 580. doi: 10.1080/09687590701560154. Galabuzi, G. E. (2004) Chapter 16: Social Exclusion. In: Social Determinants of health, Canadian perspectives (ed. D. Raphael), pp.233 252. Canadian Scholars Press Inc., Toronto, ON, USA.

6 M. Phoenix and P. Rosenbaum Jack, S., Dicenso, A. & Lonfeld, L. (2002) Opening doors: factors influencing the establishment of a working relationship between paraprofessional home visitors and at risk families. Canadian Journal of Nursing Research, 34, 59 69. King, G., Tucker, M. A., Baldwin, P., Lowry, K., LaPorta, J. & Martens, L. (2002) A life needs model of pediatric service delivery: services to support community participation and quality of life for children and youth with disabilities. Physical & Occupational Therapy in Pediatrics, 22, 53 77. Law, M. (2002) Participation in the occupations of everyday life. American Journal of Occupational Therapy, 56, 640 649. Maharaj, V., Rahman, F. & Adamson, L. (2014) Tackling child health inequalities due to deprivation: using health equity audit to improve and monitor access to a community paediatric service. Child: Care, Health and Development, 40, 223 230. doi: 10.1111/ cch.12011. Pennington, L., Goldbart, J. & Marshall, J. (2005) Direct speech and language therapy for children with cerebral palsy: findings from a systematic review. Developmental Medicine and Child Neurology, 47, 57 63. Petrenchik, M. T. (2008) Childhood Disability in the Context of Poverty. CanChild Centre for Childhood Disability Research, Hamilton, ON. Russell, D. J., Rivard, L. M., Walter, S. D., Rosenbaum, P. L., Roxborough, L., Cameron, D., Darrah, J., Bartlett, D. J., Hanna, S. E. & Avery, L. M. (2010) Using knowledge brokers to facilitate the uptake of pediatric measurement tools into clinical practice: a before-after intervention study. Implementation Science, 5, 92. doi: 10.1186/1748-5908-5-92. Valentine, F. (2001) Enabling citizenship: full inclusion of children with disabilities and their parents. Canadian Policy Research Network Discussion Paper No. F 13. http://www.cprn.org/ documents/3594_en.pdf Waring, J., Currie, G., Crompton, A. & Bishop, S. (2013) An exploratory study of knowledge brokering in hospital settings: facilitating knowledge sharing and learning for patient safety? Social Science & Medicine, 98, 79 86. doi: 10.1016/ j.socscimed.2013.08.037. Winkworth, G., McArthur, M., Layton, M., Thomson, L. & Wilson, F. (2010) Opportunities lost why some parents of young children are not well-connected to the service systems designed to assist them. Australian Social Work, 63, 431 444. doi: 10.1080/ 0312407X.2010.508170. Appendix Evidence to practice gap Evidence based recommendation Current practice MATCH recommendation Listen to parents and allow them to identify their needs Take time to build relationships Collaborate with community partners Sustain intervention over time Assessment is focussed on child s skills/needs as determined through parent report and direct assessment. Care path recommendations are based on child s age, diagnosis or type of delay, and severity (e.g. motor speech care path, birth to 30 month care path). Personal and environmental information is not routinely collected (e.g. parent health issues, transportation information). Primarily goals are client focussed (e.g. increase vocabulary) parent s goals are specific to therapy skills (e.g. learn language facilitation techniques). A train the trainer approach is not a part of any formal care path. Goals and information are shared, but there are no shared scripts as recommended in the literature. Current policies state that a client be discharged due to truancy if two appointments are missed without prior notification. A client will also be discharged if they do not respond to two phone calls and a letter inviting them to therapy within a prespecified period of time. 1 primary goal is targeted and it must be chosen by the parent when they are ready to do so. Building a relationship with the parent is the first goal of the program. Beginning where the family is comfortable, may be day care, Early Years centre, in their home with someone they know (e.g. family visitor through Healthy Babies Healthy Children). This requires collaboration. The program aims to continue service for clients by decreasing number of missed appointments and discharges due to truancy. KT theory was used to promote the sustained use of the MATCH care path. Jack, Dicenso, & Lonfeld, 2002; Barrett 2008; Boag-Munroe & Evangelou 2012; Cortis 2012.