Successful Transitions Towards Adulthood and Self-Management for Young People with Physical Disabilities

Last modified by Ann Watkins on 2016/04/07 17:46

Children's Rehab Research Network

Project Outline - 2004

"Transitions are a part of normal, healthy development…a dynamic, life-long process that seeks to meet [people’s] individual needs as they move from childhood to adulthood (p. 1304).1

For more information on this topic also see, “The Best Journey to Adult Life” For Youth with Disabilities An Evidence‐based Model and Best Practice Guidelines for the Transition to Adulthood for Youth with Disabilities.

The Transitions Initiative represents an interdisciplinary group of stakeholders and is addressing two primary objectives:

  1. completion of a literature review (both published and grey literature) on the topic transition into adulthood for youth with disabilities. Findings will be critically analyzed so that we can summarize current information about the transition process, factors that help or hinder transition and studies of transitions services/programs.
  2. development of a consensus on comprehensive outcomes for transition, as well as measures for those outcomes that can be utilized by rehabilitation practitioners.

Over one-half million Canadian children and youth have a disability (e.g., cerebral palsy, syndrome, intellectual handicap, acquired brain injury, autism, specific language disorder) that compromises their physical, social and/or emotional health and developmental capacities, and presents special challenges to parents, health, social and education systems, future employers and Canadian communities. These disabilities are rarely cured, so remain an important factor as youth move into adulthood. Research indicates that transition periods such as moving into adulthood are critical times. It is at transition points that youth develop readiness skills for the next developmental life phase. These transitions present significantly more challenges for youth with disabilities, their families and the health and other systems (e.g., work, education).

Transition preparation is as an essential dimension of quality health care for youth with physical disabilities. Greater attention to preparation is needed because transitions occur at times when systems and services tend to be uncoordinated or fragmented and when people lack the information they need to navigate a transition successfully. The significance of transition preparation was recently underscored by the joint consensus statement on health care transitions released by three American professional bodies representing pediatricians, family physicians and internists1. Whereas earlier consensus statements focused on transition from pediatric to adult health care institutions2, this statement reflected a more holistic set of goals highlighting the services needed to maximize lifelong functioning not just preparation for a new health care environment1. A more holistic approach to transition preparation is significant because research reflects that youth with chronic health conditions have the same future aspirations as their peers such as independence, friendships, intimate relationships, and employment3.

A comprehensive, interdisciplinary model of transitions, informed by a critical appraisal of the literature, and building on existing models (e.g. Bloorview MacMillan Children’s Centre, British Columbia Children’s Hospital and CanChild), will clarify desired outcomes. These outcomes may include cultivation of the following abilities/domains (See Figure 1):

1) Community life functioning: skills needed to direct one’s life on a daily basis in the following areas:

1.2 physical and functional adaptation;
1.3 relationships intimacy and support;
1.4 general health and lifestyle;
1.5 independent and/or self-directed health care behaviours;

2) Educational opportunities: including access to assessment of abilities and support for special learning needs and equitable access to higher education as desired.

3) Living situation: access to a range of living options depending on developmental readiness and needs.

Preliminary Model of Transition Domains

Figure 1: Preliminary Model of Transition Domains [Antle 2004 preliminary adaptation of TIP model by Clark4, University of South Florida, p.16]

In this initiative an interdisciplinary team is collaborating to conduct five tasks:

  1. Conduct a critical appraisal of the literature;
  2. Prepare an annotated bibliography of the literature on transitions;
  3. Develop consensus about domains for outcome measurement;
  4. Develop assessment of whether valid, reliable and sensitive measures exist for such domains using existing review mechanisms (e.g. CanChild All About Outcomes; HSC Psychosocial Outcomes database);
  5. Determine need for qualitative measures;
  6. Develop a revised environmental scan identifying domains for which outcome measures exist and those that require further investigation and or development.

Following completion of this initative the collective will examine the potential for future externally-funded research.

Team Members:

Investigator

  • Debra Stewart, CanChild Centre for Childhood Disability Research, McMaster University

Co-Investigators (In alphabetical order)

  • Patricia Baldwin, Thames Valley Children’s Centre
  • Jan Burke-Gaffney, Hamilton Family Network
  • Teresa Carter, Hamilton Health Sciences
  • Laura Forma, Occupational Therapy Supervisor, West Park Health Care Centre, Manager, Gage Transition to Independent Living
  • Mary Law, CanChild Centre for Childhood Disability Research, McMaster University
  • Yani Hamdani, Bloorview MacMillan Children’s Centre and door2adulthood website
  • Helen Healey, Bloorview MacMillan Children’s Centre
  • Gillian King, Thames Valley Children’s Centre, London
  • Karen Margello, Hamilton Health Sciences, Children’s Developmental Rehabilitation Program
  • Shubhra (Sue) Mukherjee, Rehabilitation Institute of Chicago
  • Reena Nikou, Consumer and Advocate
  • Susanne Palmiere, Parent of children with disabilities and OCARS Board Member.

References

  1. Blum RW, Hirsch D, Kastner TA, Quint RD, et al. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110(6):1304-1306.
  2. Blum RW. Transition to adult health care: setting the stage. Journal of Adolescent Health 1995;17(1):3-5.
  3. Court J. Outpatient-based transition services for youth. Pediatrician 1991;18(2):150-156.
  4. Clark HBR. Transitions to independence (TIP) system: TIP system development and operations manual. Tampa, Florida: University of South Florida; 2003.
Tags: transition
Created by CRRN CRRN on 2010/03/09 20:46