Trust Testing in Care Pathways for Neurodevelopmental Disorders A Grounded Theory Study
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Abstract
Building care pathways for the expansive, heterogeneous, and complex field of neurodevelopmental disorders (ND) is challenging. This classic grounded theory study conceptualizes problems encountered and resolved by professionals in the unpacking— diagnosis and work up—of ND. A care pathway for ND in children and adolescents was observed for six years. Data include interviews, documentation of a dialogue-conference devoted to the ND care pathway, 100+ hours of participant observations, and coding of stakeholder actions. Trust testing explores whether professional unpacking collaboration can occur without being “stuck with the buck” and if other professionals can be approached to solve own unpacking priorities. ND complexity, scarce resources, and diverging stakeholder interests undermine the ability to make selfless collaborative professional choices in the care pathway. ND professionals and managers should pay as much attention to trust issues as they do to structures and patient flows. The trust testing theory may improve the understanding of ND care pathways further as a modified social dilemma framework.
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References
Agle, B. R., Donaldson, T., Freeman, R. E., Jensen, M. C., Mitchell, R. K., & Wood, D. J. (2008). Dialogue: Toward superior stakeholder theory. Business Ethics Quarterly, 18(2), 153-190.
Ahgren, B. (2010). Mutualism and antagonism within organisations of integrated health care. Journal of Health, Organisation and Management, 24(4), 396-411.
Barkley, R. A. (2002). Major life activity and health outcomes associated with attention-deficit/hyperactivity disorder. Journal of Clinical Psychiatry, 63(SUPPL. 12), 10-15.
Barkley, R. A., Fischer, M., Smallish, L., & Fletcher, K. (2002). The persistence of attention-deficit/hyperactivity disorder into young adulthood as a function of reporting source and definition of disorder. Journal of Abnormal Psychology, 111,279-289. doi:10.1037/0021-843x.111.2.279
Baron-Cohen, S., Scott, F. J., Allison, C., Williams, J., Bolton, P., Matthews, F. E., & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population study. British Journal of Psychiatry, 194, 500-509. doi:10.1192/bjp.bp.108.059345
Blew, H., & Kenny, G. (2006). Attention deficit hyperactivity disorder: The current debate and neglected dimensions. Journal of Child Health Care, 10, 251-263. doi:10.1177/1367493506066485
Bornstein, G. (2008). A classification of games by player type. In A. Biel, D. Eek, T. Gärling, & M. Gustafsson (Eds.), New issues and paradigms in research on social dilemmas (pp. 27-42). New York, NY: Springer.
Brown, C. A. (2006). The application of complex adaptive systems theory to clinical practice in rehabilitation. Disability and Rehabilitation, 28, 587-593.doi:10.1080/00222930500219175
Burgess, I. C. (2002). Service innovations: Attention-deficit hyperactivity disorder - development of a multi-professional integrated care pathway. Psychiatric Bulletin, 26, 148-151. doi:10.1192/pb.26.4.148
Campbell, H., Hotchkiss, R., Bradshaw, N., & Porteous, M. (1998). Integrated carepathways. British Medical Journal, 316(7125), 133-137. Cox, D. J. (2012). From interdisciplinary to integrated care of the child with autism: The essential role for a code of ethics. Journal of Autism and Developmental Disorders, 42, 2729-2738. doi:10.1007/s10803-012-1530-z
Daniels, A. M., Halladay, A. K., Shih, A., Elder, L. M., & Dawson, G. (2014). Approaches to enhancing the early detection of autism spectrum disorders: A systematic review of the literature. Journal of the American Academy of Child and Adolescent Psychiatry, 53, 141-152. doi:10.1016/j.jaac.2013.11.002
Dawes, R. M., & Messick, D. M. (2000). Social dilemmas. International Journal of Psychology, 35(2), 111-116. de Heus, P., Hoogervorst, N., & Dijk, E. V. (2010). Framing prisoners and chickens: Valence effects in the prisoner's dilemma and the chicken game. Journal of
Experimental Social Psychology, 46, 736-742. doi:10.1016/j.jesp.2010.04.013
Dodek, P., Cahill, N. E., & Heyland, D. K. (2010). The relationship between organizational culture and implementation of clinical practice guidelines: A narrative review. Journal of Parenteral and Enteral Nutrition, 34, 669-674. doi:10.1177/0148607110361905
Evans, J. M., & Baker, G. R. (2012). Shared mental models of integrated care: Aligningnmultiple stakeholder perspectives. Journal of Health, Organisation and Management, 26, 713-736. doi:10.1108/14777261211276989
Gillberg, C. (2010). The ESSENCE in child psychiatry: Early symptomatic syndromes eliciting neurodevelopmental clinical examinations. Research in Developmental Disabilities, 31, 1543-1551. doi:10.1016/j.ridd.2010.06.002
Gillberg, C., Cederlund, M., Lamberg, K., & Zeijlon, L. (2006). Brief report: "The autism epidemic". The registered prevalence of autism in a Swedish urban area. Journal of Autism and Developmental Disorders, 36, 429-435. doi:10.1007/s10803-006-0081-6
Gillberg, C., Gillberg, I. C., Rasmussen, P., Kadesjö, B., Söderström, H., Råstam, . . . , &
Niklasson, L. (2004). Co-existing disorders in ADHD - Implications for diagnosis and intervention. European Child and Adolescent Psychiatry, Supplement, 13,I/80-I/92. doi:10.1007/s00787-004-1008-4
Glaser, B. G. (1978). Theoretical sensitivity: Advances in the methodology of grounded theory. Mill Valley, CA: Sociology Press.
Glaser, B. G. (1998). Doing grounded theory: Issues and discussions. Mill Valley, CA: Sociology Press.
Guo, C., & Acar, M. (2005). Understanding collaboration among nonprofit organizations: Combining resource dependency, institutional, and network perspectives. Nonprofit and Voluntary Sector Quarterly, 34, 340-361. doi:10.1177/0899764005275411
Halperin, J. M., Bédard, A. C. V., & Curchack-Lichtin, J. T. (2012). Preventive interventions for ADHD: A neurodevelopmental perspective. Neurotherapeutics, 9,531-541. doi:10.1007/s13311-012-0123-z
Kildea, S., Wright, J., & Davies, J. (2011). Making sense of ADHD in practice: A stakeholder review. Clinical Child Psychology and Psychiatry, 16, 599-619. doi:10.1177/1359104510390428
King, G., Cathers, T., King, S., & Rosenbaum, P. (2001). Major elements of parents' satisfaction and dissatisfaction with pediatric rehabilitation services. Children's Health Care, 30(2), 111-134.
Kirby, A., & Thomas, M. (2011). The whole child with developmental disorders. British Journal of Hospital Medicine, 72(3), 161-167.
Kollock, P. (1998). Social dilemmas: The anatomy of cooperation. Annual Review of Sociology, 24, 183-214. doi:10.1146/annurev.soc.24.1.183
Leyfer, O. T., Folstein, S. E., Bacalman, S., Davis, N. O., Dinh, E., Morgan, J., . . . , & Lainhart, J. E. (2006). Comorbid psychiatric disorders in children with autism: Interview development and rates of disorders. Journal of Autism and Developmental Disorders, 36, 849-861. doi:10.1007/s10803-006-0123-0
McDaniel Jr, R. R., Lanham, H. J., & Anderson, R. A. (2009). Implications of complex adaptive systems theory for the design of research on health care organizations. Health Care Management Review, 34, 191-199.doi:10.1097/HMR.0b013e31819c8b38
Miller, A. R., Condin, C. J., McKellin, W. H., Shaw, N., Klassen, A. F., & Sheps, S. (2009).Continuity of care for children with complex chronic health conditions: Parents' perspectives. BMC Health Serv Res, 9, 242. doi:10.1186/1472-6963-9-242
Mur-Veeman, I., Hardy, B., Steenbergen, M., & Wistow, G. (2003). Development of
integrated care in England and the Netherlands: Managing across public-private boundaries. Health Policy, 65, 227-241. doi:10.1016/s0168-8510(02)00215-4
Phillips, R., Freeman, R. E., & Wicks, A. C. (2003). What stakeholder theory is not. Business Ethics Quarterly, 13(4), 479-502+596+597+598.
Polanczyk, G., De Lima, M. S., Horta, B. L., Biederman, J., & Rohde, L. A. (2007). The worldwide prevalence of ADHD: A systematic review and metaregression analysis. American Journal of Psychiatry, 164, 942- 948.doi:10.1176/appi.ajp.164.6.942
Posthuma, D., & Polderman, T. J. C. (2013). What have we learned from recent twin studies about the etiology of neurodevelopmental disorders? Current Opinion in Neurology, 26, 111-121. doi:10.1097/WCO.0b013e32835f19c3
Rommelse, N. N. J., Altink, M. E., Fliers, E. A., Martin, N. C., Buschgens, C. J. M., Hartman, C. A., . . . , & Oosterlaan, J. (2009). Comorbid problems in ADHD: Degree of association, shared endophenotypes, and formation of distinct subtypes. Implications for a future DSM. Journal of Abnormal Child Psychology, 37, 793-804. doi:10.1007/s10802-009-9312-6
Rommelse, N. N. J., Franke, B., Geurts, H. M., Hartman, C. A., & Buitelaar, J. K. (2010)Shared heritability of attention-deficit/hyperactivity disorder and autism spectrum disorder. European Child and Adolescent Psychiatry, 19, 281-295.doi:10.1007/s00787-010-0092-x
Ronald, A., Larsson, H., Anckarsäter, H., & Lichtenstein, P. (2014). Symptoms of autism and ADHD: A Swedish twin study examining their overlap. Journal of Abnormal Psycholoy. doi:10.1037/a0036088
Ronald, A., Simonoff, E., Kuntsi, J., Asherson, P., & Plomin, R. (2008). Evidence for overlapping genetic influences on autistic and ADHD behaviours in a community twin sample. Journal of Child Psychology and Psychiatry and Allied Disciplines, 49, 535-542. doi:10.1111/j.1469-7610.2007.01857.x
Rothstein, B. (2001). The universal welfare state as a social dilemma. Rationality and Society, 13(2), 213-233.
Rutter, M. (2013a). Changing concepts and findings on autism. Journal of Autism and Developmental Disorders, 43(8), 1749-1757. doi:10.1007/s10803-012-1713-7
Rutter, M. (2013c). Developmental psychopathology: A paradigm shift or just a relabeling? Dev Psychopathol, 25, 1201-1213. doi:10.1017/S0954579413000564
Salmon, G., & Kirby, A. (2008). Schools: Central to providing comprehensive CAMHservices in the future? Child and Adolescent Mental Health, 13, 107-114. doi:10.1111/j.1475-3588.2007.00468.x
Schein, E. H. (2006). From brainwashing to organizational therapy: A conceptual and
empirical journey in search of 'systemic' health and a general model of change
dynamics. A drama in five acts. Organization Studies, 27, 287-301. doi:10.1177/0170840606061831
Schmidt, S., & Petermann, F. (2009). Developmental psychopathology: Attention Deficit Hyperactivity Disorder (ADHD). BMC Psychiatry, 9, 58. doi:10.1186/1471-244X-9-58
Scott, C., & Hofmeyer, A. (2007). Networks and social capital: A relational approach to primary healthcare reform. Health Research Policy and Systems, 5. doi:10.1186/1478-4505-5-9
Singh, S. P., Paul, M., Ford, T., Kramer, T., Weaver, T., McLaren, S., . . . , & White, S. (2010). Process, outcome and experience of transition from child to adult mental healthcare: Multiperspective study. British Journal of Psychiatry, 197, 305-312. doi:10.1192/bjp.bp.109.075135
Tarrant, C., Stokes, T., & Colman, A. M. (2004). Models of the medical consultation:
Opportunities and limitations of a game theory perspective. Quality and Safety in Health Care, 13, 461-466. doi:10.1136/qshc.2003.008417
Turgay, A., Goodman, D. W., Asherson, P., Lasser, R. A., Babcock, T. F., Pucci, M. L., &Barkley, R. (2012). Lifespan persistence of ADHD: The life transition model and its application. Journal of Clinical Psychiatry, 73, 192-201. doi:10.4088/JCP.10m06628
Van Dijk, E., De Cremer, D., Mulder, L. B., & Stouten, J. (2008). How do we react to feedback in social dilemmas? In A. Biel, D. Eek, T. Gärling, & M. Gustafsson (Eds.), New issues and paradigms in research on social dilemmas (pp. 43-56). New York, NY: Springer.
Van Raak, A., Paulus, A., & Mur-Veeman, I. (2005). Why do health and social care providers co-operate? Health Policy, 74, 13-23. doi:10.1016/j.healthpol.2004.12.006
Willcutt, E. G. (2012). The prevalence of DSM-IV Aattention-deficit/hyperactivity disorder: A meta-Analytic review. Neurotherapeutics, 9, 490-499. doi:10.1007/s13311-012-0135-8
Wiltsey Stirman, S., Kimberly, J., Cook, N., Calloway, A., Castro, F., & Charns, M. (2012). The sustainability of new programs and innovations: A review of the empirical literature and recommendations for future research. Implementation Science, 7. doi:10.1186/1748-5908-7-17
Wolraich, M. L., Wibbelsman, C. J., Brown, T. E., Evans, S. W., Gotlieb, E. M., Knight, J. R., . . . , & Wilens, T. (2005). Attention-deficit/hyperactivity disorder among adolescents: A review of the diagnosis, treatment, and clinical implications. Pediatrics, 115, 1734-1746. doi:10.1542/peds.2004-1959
Yoshida, Y., & Uchiyama, T. (2004). The clinical necessity for assessing attention deficit/hyperactivity disorder (AD/HD) symptoms in children with high-functioning pervasive developmental disorder (PDD). European Child and Adolescent Psychiatry, 13, 307-314. doi:10.1007/s00787-004-0391-1