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Table 3 Key findings from reviewed sources

From: Transitions in mental health and addiction care for youth and their families: a scoping review of needs, barriers, and facilitators

Source

Key Findings

Needs | Barriers | Facilitators

Family Needs | Roles when Involved

Abidi 2017

â–  No coordination between child and adult MH systems

â–  Arbitrary age threshold

â–  Adolescent feel unprepared for transition

â–  Siloing between CAMHS & AMHS

â–  Youth prefer structure, active involvement

â–  Families feel isolated, helpless in AMHS

Appleton 2011

â–  TRACK study highlights poor transitions, awareness of transition barriers

â–  No support for continuity of care

â–  Arbitrary age threshold

â–  Different approaches in CAMHS vs. AMHS

â–  No consistent transition protocols

N/A

Arcelus 2008

â–  Lack of continuity/coordination of care between child and adult services

â–  Problematic age boundaries

â–  Insufficient training for AMHS providers

â–  Family involvement is part of the gold standard care pathway

Belling 2014

â–  Unclear eligibility criteria, inconsistent thresholds

â–  High caseloads in AMHS

â–  Limited services provided by AMHS

N/A

Birleson 2001

â–  Need for link between CAMHS & AMHS to overcome differences

â–  CAMHS experience working with families should be shared with AMHS

Bruce 2008

■ Differences, rigid boundaries between CAMHS & AMHS – contributing to traumatizing transitions for youth

â–  Limiting eligibility criteria for adult services

â–  Insufficient availability of adult services

â–  Families feel excluded due to confidentiality concerns in adult services

Butterly 2015

â–  Need for youth-centred model, consideration of other transitions

■ Families are given insufficient information regarding youth’s care

Cappelli 2014

â–  Transitioned youth have greater ED visits, more unmet needs

â–  Varying transition times across AMHS providers

N/A

Children’s Mental Health Ontario 2013

â–  Youth fall through the cracks when their illness is deemed not severe enough for service

â–  Providers have limited resources to deal with extensive waitlists

â–  Barriers present in differences between child and adult care systems, funding structures

N/A

Cleverley 2018

â–  Developmental readiness for transition should be considered instead of chronological age

â–  Transitions should be formally tracked and managed

â–  Transition planning should occur early

â–  Family should be involved in entire transition process, from planning to handover of care

Davidson 2011

â–  Mismatch between developmental readiness for transition and age cut-offs

â–  Need for a youth-centred, inclusive, proactive, collaborative model of care

â–  Many youth continue to need family support after transitioning to adult care

■ Families play an important role and should be actively included in youth’s transition care

â–  Youth and families should be educated on confidentiality changes during transitions

Davis 2002

â–  Parent financial support for services points to severe lack of funding

â–  Stigma rated as most common barrier

â–  Services deemed often inappropriate for youth age group

■ Many parents expressed frustration at lack of information and feeling excluded from their youth’s care

Davis 2009

â–  Variations present in eligibility criteria and age thresholds

â–  Differences between child and adult systems further exacerbating transition experiences

â–  Fragmentation of funding for MHA care

â–  Need for developmentally appropriate services

â–  Families often shut out of care after transition into adult system

■ Appropriate level of family involvement can facilitate youth’s treatment progress

Dimitropoulos 2012

â–  Denial regarding illness and mixed feelings about recovery posed as significant barriers to active participation in care

■ Parents need to be involved in care regardless of youth’s age

â–  Confidentiality is a significant barrier for parent involvement during transition

Dimitropoulos 2013

â–  Need for greater flexibility in transition time and consideration for developmental readiness

â–  Parent involvement should be gradually decreased and parents should be educated on changing roles

Dimitropoulos 2015 (1)

N/A

■ Need for clarity of family’s role during and after transition

Dimitropoulos 2015 (2)

â–  Abrupt loss of support experienced when child MHA care is discontinued

â–  Need for conversations about transition well ahead of discharge

■ Conflicts often arise after transitions due to family’s changing role

Dowdney 2014

â–  Different eligibility criteria between child and adult systems

â–  Poorly coordinated transition protocols

N/A

Dunn 2017

â–  Both care systems reported as being not youth-friendly

â–  Divide between child and adult care systems

â–  Need for joint working between CAMHS and AMHS, especially for transitions

N/A

Embrett 2016

â–  Inadequate support available for transitioning youth

â–  Siloing of care approaches, funding structures

N/A

Evidence Exchange Network for Mental Health and Addictions 2016

â–  Need for reorganization of service delivery, consideration of developmental appropriateness, holistic supports

â–  Need for partnerships across services

N/A

Garland 2019

â–  Several challenges regarding autonomy pose as barriers to care

â–  Many logistical barriers impede transition e.g. transportation, financial costs

â–  Facilitated communication between family and youth can strengthen transition and care

â–  Need to educate family on how to prepare youth for independence

Gilmer 2012

â–  Significant concerns included: long wait times, weak patient-provider relationships, inappropriate level of treatments, inconvenient scheduling

â–  Need for more community-based supports and peer mentorship

N/A

Health Outcomes International 2017

■ Youth don’t feel prepared or supported during transitions

â–  Divide between CAMHS and AMHS, including funding structures, lack of communication/collaboration

â–  Need for self-management skills, active participation of youth in care, joint working between systems

N/A

Hovish 2012

â–  Youth felt more prepared and supported when relationship with key worker continued through transition

â–  Transition planning meetings considered an important aspect of successful transition

â–  Youth experience transitions in other parts of their lives in parallel with transitioning in MHA care

â–  Parents experience difficulty adjusting to decrease in involvement after transition

â–  Parents preferred greater involvement in care and flexibility in transition time

Jivanjee 2011

â–  Youth and parents reported positive experiences when providers were responsive to needs

â–  Youth reported ineffective communication with service providers

â–  Support groups viewed positively when consisting of participants of the same age

â–  Families appreciated wraparound services

â–  Families were unhappy with restrictive eligibility criteria, ineffective communication with providers, inaccessible treatment options

â–  Youth appreciated parent support post-transition

â–  Families appreciated supports from peers in similar situations

Joint Commissioning Panel for Mental Health 2013

â–  Divide between CAMHS and AMHS

â–  Many youth get lost during transition

â–  Absence of good transition protocols

N/A

Koroloff 1990

â–  Need for joint planning, early preparation for transition, key transition worker

■ Transition should include planning for other aspects of youth’s life

â–  Families should be involved in transition planning

Lamb 2013

â–  Training differences between CAMHS and AMHS

â–  Youth often have no corresponding AMHS service to transition into

â–  Many youth discharged from AMHS without being seen

â–  Need for improvement in policy implementation for transitions

â–  Need for youth model of transition

â–  Need for consideration of developmental age

â–  Youth and families want to be actively involved in care

â–  Youth and families expressed confusion regarding changes between CAMHS and AMHS

Lambert 2014

â–  PSWs facilitate CAMHS-AMHS transitions

â–  Families had positive experiences with PSW involvement in transition

Leavey 2019

â–  None of the transfers met the criteria for optimal transitions

â–  Inconsistent transition protocols

N/A

Lindgren 2013

â–  Providers in both systems highlight transition as a time of uncertainty, fear for youth

â–  Need for consideration of developmental age

â–  Different care approaches in CAMHS vs. AMHS

â–  Gaps in service identified by providers in both systems

â–  Need for continuation of therapeutic relationship, cooperation between systems, flexibility in transition time

â–  Need for good relationship between youth and families

Lindgren 2014

â–  Need for consideration of maturity level

â–  Transition considered a period of uncertainty, having to start over, loss of secure supports

â–  Youth feel left out of care, disruption to care

â–  Families understood having to let go, but expressed frustration over not being able to support youth adequately

â–  Need for family supports

Loos 2018 (1)

■ Dehumanized care – youth felt unheard and uncared for

â–  Need for individualized care, close provider relationships

â–  Stigma and passivity as factors influencing health behaviours

■ Desire for ‘parental-like’ support

Loos 2018 (2)

â–  Lack of patient-centred care, active participation in care

â–  Need for networking between CAMHS & AMHS

â–  Need for flexible age boundary

N/A

Mandarino 2014

â–  Fragmentation caused by differences between systems results in confusion and disengagement

â–  Long wait time for free services

â–  Need for both formal and informal support

â–  Need for youth involvement in developing programs

â–  Support for parental involvement in child system not present in adult system

■ After transition, youth may no longer be considered dependents on parents’ health care plans

Manuel 2018

â–  Need for meaningful relationships, support from alumni of treatment, transition worker, proactive planning, active participation in care

â–  Conflict between providers and youth on youth wants/needs

â–  Family is primary source of motivation, confidence

â–  Caregivers experience burnout, exhaustion

â–  Level of family engagement depends on quality of family-youth relationship

â–  Families also need support through transitions

â–  Families responsible for lack of transition readiness

McDougall 2014

â–  Need for transition planning recognized previously but still no protocols in place

â–  Need for youth voice in transition planning

â–  No agreement on age thresholds

â–  Transition difficulties impede recovery

■ Desire for family’s active participation in care

McGorry 2007

â–  Key barrier: cutting off care at age 18

â–  AMHS insensitive to developmental needs, family needs

â–  Need for youth-focused approach

â–  Need to increase transition age threshold

N/A

McGrandles 2012

â–  Need for agreement on defining transition, consideration of development

â–  Differences in CAMHS vs. AMHS in care structures, culture, policies

â–  Need for flexible, holistic approach to transition

â–  Rigid age thresholds contribute to discontinuous care

â–  Cooperation between CAMHS and AMHs facilitates smooth transitions

â–  Need for early planning, incorporation of youth voice

■ Strong family ties associated with better MH outcomes – providers can facilitate this by promoting communication between youth and families

McLaren 2013

â–  AMHS individual vs. CAMHS family approaches

â–  Need for joint working and early communication between systems

â–  Need for preparation for transition

â–  Transition is difficult for families too

■ Family participation in AMHS care is subject to youth’s wishes

McNamara 2014

â–  No proper transition agreements between CAMHS and AMHS, results in unstructured transitions

â–  Half of AMHS teams never have a single provider to coordinate transitions

■ Meetings regarding transitions often don’t occur

â–  Need for both systems to work together to prepare youth for transition

â–  Level of parental involvement varies in AMHS

Mental Health Commission of Canada 2017

■ No coordination between child and adult MH services, differences in cultures, long wait time – barriers to continuity

â–  Need for access to equitable care regardless of personal circumstances

â–  Need for youth voice in creating solutions

â–  Need for flexible, youth-driven, holistic, culturally relevant, empowering, responsive approaches

â–  Need for universal training competencies for providers working with youth

■ Need for family-informed approaches, consideration of youth’s circle of care

Mulvale 2015

â–  Differences in care approaches, expectations lead to difficult transitions

â–  Narrower range of services in AMHS than CAMHS

â–  Less follow-up and greater disengagement in AMHS due to emphasis on greater autonomy

â–  Decreased family involvement in AMHS, need for youth consent

â–  Youth accustomed to family support have greater difficulty transitioning to AMHS

Muñoz-Solomando 2010

â–  Need to involve youth and families in planning

â–  Differences in care approaches are obstacles during transitions

â–  Transitions succeed when providers in child and adults services have good relationships with each other

â–  Unique youth needs often not met, greater variation in quality of care within adult system

â–  Need for protocols based on best practice, clarity on age thresholds

N/A

Paul 2014

â–  Stigma is a barrier to access and engagement

â–  Differences between systems disrupt continuity of care

â–  Varied transition policies, no specific transition protocols

â–  Optimal transition often not experienced

â–  Parents desire youth integration into community, preparation for adulthood, solutions for dealing with stigma, peer support, early transition planning, meaningful communication with providers

Plaistow 2014

â–  Youth desire information about services: visibility of services, ability to make choices about services

â–  Youth desire accessible services: flexible, understandable language, geographically convenient, relaxed atmosphere

â–  Desired traits in providers: approachable, genuine, positive, skilled, ability to maintain confidentiality

â–  Youth find unhelpful: stigma, lack of information/access, being sent away with medication

N/A

Rayar 2015

â–  Mismatch between systems

â–  Need for continuity of care

â–  Transition viewed as overwhelming, frustrating

■ Having to start over after transition because the systems don’t communicate

â–  Not receiving same level of service in the adult system

â–  Families less involved in adult systems, increasing risk of youth disengagement from care

Richards 2004

■ Need for consideration of development, personal history, other aspects of youth’s life

â–  Need for holistic, flexible approach, greater collaboration between system, key transition worker

â–  Insufficient resources lead to long wait lists, inadequate staff

â–  Youth considered a minority within both systems

â–  Need for youth-friendly, age-appropriate services

â–  Difficulties engaging youth due to stigma, reluctance

â–  Some youth fall through gaps in care e.g. homeless

â–  Need for provider training to meet youth needs

â–  Need for consistency in age cut-offs

N/A

Riosa 2015

â–  Fear, confusion, ambivalence about transition

â–  Desire for right fit with providers, active participation in care

â–  Negative experiences with family, communication issues

â–  Variability in family involvement, relationships

Sainsbury 2011

â–  Youth MH needs are different from children and adults

â–  Inconsistent age cut-offs, referral criteria

■ Need for youth’s active participation in care, service planning

â–  Need for early transition planning, alternative supports to AMHS, consideration of other life needs, provider collaboration, flexibility, timely provision of information

â–  Involve family early

Salaheddin 2016

â–  Main stigma barrier: feelings of embarrassment, shame

â–  Main attitude barrier: dislike discussing feelings/thoughts

â–  Main instrumental barrier: financial costs

â–  Misconception about available help as a barrier

â–  Fear of speaking up to ask help from family, not wanting to feel like a burden or worry/upset family

Schandrin 2016

â–  Youth and families often not included in transition planning

â–  Difficulty in collaborating between CAMHS & AMHS due to differences in language, care, structure

N/A

Scholz 2019

â–  Successful transitions uncommon

â–  Unclear transition pathways

â–  Consistent key worker facilitates transition

â–  Desire for active participation in care, meaningful patient-provider relationships

â–  Insufficient communication between CAMHS & AMHS

â–  Decreased parental involvement, decreased access to information

â–  Parents reported absence of communication/coordination between providers

Signorini 2018

â–  Differences, lack of connection between CAMHS & AMHS

â–  Transition planning, teams not common

■ CAMHS case managers not often available; and when they are, they’re often shut out of post-transition care

â–  Family involvement dictated by agreement established with youth

â–  Family involvement considered part of good transition planning

Singh 2005

â–  Child vs. adult psychiatry have different focuses e.g. sociological vs. biological contexts

â–  Different perspectives, languages between the systems dictate who can be involved in the care

â–  Adolescent developmental aspects overlap with experiences of MHA concerns

â–  Rigid age cut-offs

â–  More services available in child than adult system

â–  Need for training of specialized worker who can facilitate joint working, liaison between systems

â–  Need for written transition protocols

â–  Families feel excluded from decision-making in adult system

Singh 2010

â–  Those with severe illnesses, on medication were more likely to be transitioned

â–  Need for transition planning, joint working

â–  Parents less involved in AMHS

â–  Some youth may not want parents involved in care anymore

Singh 2015

â–  Those with less severe concerns are less likely to transition successfully

â–  Youth feel unprepared, unsupported

â–  Differences between systems weaken transition pathway e.g. culture, organization, funding structure

â–  Youth and families feel unheard during transition process

â–  Stigma and misperceptions contribute to declining of services

Skehan 2017

â–  Developmental phase of rejecting authority may contribute to youth disengaging from care

â–  Need for clarity around decision making

â–  Need for provider training relevant to youth development

â–  Confusion when navigating adult services, need for knowledge/understanding of services

â–  Need for age-appropriate services

â–  Need for youth voice in program development

â–  Need for treatment to focus on transitioning to adulthood rather than adult services

N/A

Stagi 2015

â–  Transition more likely for those with more severe concerns

â–  Need for collaboration among services

N/A

TAYMHA Advisory Committee 2015

■ Need for consideration of other developmental transitions that complicate youth’s MHA concerns

â–  Differences between child and adult systems

â–  Need for youth-friendly services, provider training, collaboration across organizations

N/A

Ubido 2015

â–  Lack of information available to youth, families, providers

â–  Need for transition team to mitigate waitlist issues

â–  Need for joint working to overcome differences between systems

â–  Families continue to play important roles during transition e.g. advocate, coordinator, nurturer

van der Kamp 2018

â–  Inconsistent, short transition periods and outdated protocols

â–  Differences between services leave youth unprepared

â–  Need for better communication between services

â–  Flexible transition age and preparation facilitate transition

â–  Youth differ in preference for level of family involvement

Vloet 2011

â–  Lack of communication, role confusion at CAMHS-AMHS interface

â–  Inflexible funding structures, age thresholds

â–  Need for consideration of unique developmental needs, proactive planning

N/A

Whitney 2012

â–  Youth experience other life transitions at the same time

â–  Age-appropriate supports facilitate transition

N/A

Winston 2012

■ Several differences between CAMHS & AMHS – emphasis on independence, responsibility, level of inpatient treatment

â–  Unclear transition procedures, ineffective relationships with providers

â–  Need for purposeful transition planning, joint training, proactive approach, consideration of developmental needs

■ Abrupt change in parental involvement – need for gradual transfer of care