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Article ; Online: Exploring the transition experiences of young adults with cerebral palsy.

Clough, Isabelle / Culnane, Evelyn / Loftus, Hayley

2023 Volume 50, Issue 1, Page(s) e13186

Abstract: Background: It is important that young adults with a chronic health condition or developmental disability, such as cerebral palsy, receive adequate healthcare transition preparation and support to optimise the transition period and transfer from ... ...

Abstract	Background: It is important that young adults with a chronic health condition or developmental disability, such as cerebral palsy, receive adequate healthcare transition preparation and support to optimise the transition period and transfer from paediatric to adult health services. Understanding the healthcare experiences of young adults during and after the transition period will provide valuable insights into what enables a positive healthcare experience for young adults in the adult health setting. Methods: Eleven young adults with cerebral palsy who had their last appointment at the Royal Children's Hospital between 2016 and 2018 were purposively recruited for this study. Ten participants completed one-on-one telephone interviews, and one participant provided written responses to interview questions. Five participated via parent proxy. Interviews were recorded, transcribed verbatim, and analysed using the Braun and Clarke six-step thematic analysis to create an interpretive description of participants' transition experiences. Results: Three themes were generated: (1) "preparedness of the young adult and parent," which discussed the preparation for adult healthcare, with subthemes (a) expectations of adult care and (b) development of self-management skills during transition; (2) "coordination of transfer process and continuity of care," which illustrated the impact of transfer coordination on continuity of care; and (3) "adjusting to adult services," which highlighted experiences of care in the adult setting, with subthemes (a) differences between paediatric and adult services, (b) availability and accessibility of adult and community services to meet needs, and (c) autonomy and agency. Conclusion: Dedicated transition support for young adults and their parents during transition from paediatric to adult healthcare plays an important role in ensuring a supportive and well-coordinated transition and transfer of care. Experience of care in the adult setting is influenced by a combination of both transition experience and the capacity of adult services to cater for young adults' needs.
MeSH term(s)	Humans ; Young Adult ; Child ; Qualitative Research ; Cerebral Palsy ; Transition to Adult Care ; Delivery of Health Care ; Parents
Language	English
Publishing date	2023-10-24
Publishing country	England
Document type	Journal Article
ZDB-ID	223039-2
ISSN	1365-2214 ; 0305-1862
ISSN (online)	1365-2214
ISSN	0305-1862
DOI	10.1111/cch.13186
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Article ; Online: Health-related quality of life and self-reported health status in adolescents with chronic health conditions before transfer of care to adult health care: an international cohort study.

Kallio, Mira / Tornivuori, Anna / Miettinen, Päivi J / Kolho, Kaija-Leena / Relas, Heikki / Culnane, Evelyn / Loftus, Hayley / Sawyer, Susan M / Kosola, Silja

BMC pediatrics

2024 Volume 24, Issue 1, Page(s) 163

Abstract: Background: Heath-related quality of life (HRQoL) is lower in adolescents with chronic health conditions compared to healthy peers. While there is evidence of some differences according to the underlying condition and gender, differences by measure and ... ...

Abstract	Background: Heath-related quality of life (HRQoL) is lower in adolescents with chronic health conditions compared to healthy peers. While there is evidence of some differences according to the underlying condition and gender, differences by measure and country are poorly understood. In this study we focus on the differences in HRQoL in adolescents with various chronic medical conditions in the year before transfer of care to adult health services. We also study the associations of two different HRQoL measurements to each other and to self-reported health. Methods: We recruited 538 adolescents from New Children`s Hospital, Helsinki, Finland, and the Royal Children`s Hospital, Melbourne, Australia in 2017-2020. We used two validated HRQoL measurement instruments, Pediatric Quality of Life Inventory (PedsQL) and 16D, and a visual analog scale (VAS) for self-reported health status. Results: In total, 512 adolescents (50.4% female, mean age 17.8 [SD 1.2] years), completed the survey measures. Higher HRQoL was reported in males than females in both countries (PedsQL 79.4 vs. 74.1; 16D 0.888 vs. 0.846), and in adolescents from Finland than Australia (80.6 vs. 72.2 and 0.905 vs. 0.825, p < 0.001 for all). Adolescents with diabetes, rheumatological, nephrological conditions and/or organ transplants had higher HRQoL than adolescents with neurological conditions or other disease syndromes (p < 0.001). PedsQL and 16D scores showed a strong correlation to each other (Spearman correlation coefficient r = 0.81). Using the 7-point VAS (1-7), 52% (248 of 479) considered their health status to be good (6-7) and 10% (48 of 479) rated it poor (1-2). Better self-reported health was associated with higher HRQoL. Conclusions: The HRQoL of transition aged adolescents varies between genders, diagnostic groups, and countries of residence. The association between self-reported health and HRQoL suggests that brief assessment using the VAS could identify adolescents who may benefit from in-depth HRQoL evaluation. Trial registration: Trial registration name The Bridge and registration number NCT04631965 ( https://clinicaltrials.gov/ct2/show/NCT04631965 ).
MeSH term(s)	Adolescent ; Adult ; Aged ; Child ; Female ; Humans ; Male ; Chronic Disease ; Cohort Studies ; Delivery of Health Care ; Health Status ; Quality of Life ; Self Report ; Surveys and Questionnaires
Language	English
Publishing date	2024-03-08
Publishing country	England
Document type	Clinical Trial ; Journal Article
ZDB-ID	2041342-7
ISSN	1471-2431 ; 1471-2431
ISSN (online)	1471-2431
ISSN	1471-2431
DOI	10.1186/s12887-024-04629-x
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Article: Co-designing an Integrated Health and Social Care Hub With and for Families Experiencing Adversity.

Hall, Teresa / Loveday, Sarah / Pullen, Sandie / Loftus, Hayley / Constable, Leanne / Paton, Kate / Hiscock, Harriet

International journal of integrated care

2023 Volume 23, Issue 2, Page(s) 3

Abstract: Introduction: Integrated care research often fails to adequately describe co-design methods. This article outlines the process, principles and tools to co-design an integrated health and social care Hub for families experiencing adversity.: Research ... ...

Abstract	Introduction: Integrated care research often fails to adequately describe co-design methods. This article outlines the process, principles and tools to co-design an integrated health and social care Hub for families experiencing adversity. Research methods: The Child and Family Hub was co-designed in four stages: (1) partnership building and stakeholder engagement, (2) formative research, (3) persona development and (4) co-design workshops and consultations. Local families, community members and intersectoral practitioners were engaged at each stage. The co-design workshops employed a human-centred design process and were evaluated using the Public and Patient Engagement Evaluation Tool (PEET). Results: 121 family participants and 80 practitioners were engaged in the Hub's co-design. The PEET highlighted the co-design team's satisfaction achieved by community members working alongside practitioners to generate mutual learning. Resourcing was a key challenge. Discussion: Human-centred design offered a systematic process and tools for integrating formative evidence with lived and professional experience in the Hub's co-design. Applying community engagement principles meant that a diverse range of stakeholders were engaged across all stages of the project which built trust in and local ownership of the Hub model. Conclusion: Co-design research with families experiencing adversity should attend to language, engagement methods, team composition and resourcing decisions.
Language	English
Publishing date	2023-04-05
Publishing country	England
Document type	Journal Article
ZDB-ID	2119289-3
ISSN	1568-4156
ISSN	1568-4156
DOI	10.5334/ijic.6975
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Article: Do Integrated Hub Models of Care Improve Mental Health Outcomes for Children Experiencing Adversity? A Systematic Review.

Honisett, Suzy / Loftus, Hayley / Hall, Teresa / Sahle, Berhe / Hiscock, Harriet / Goldfeld, Sharon

International journal of integrated care

2022 Volume 22, Issue 2, Page(s) 24

Abstract: This review assesses the effectiveness of integrated primary health and social care hubs on mental health outcomes for children experiencing adversity and describes common integration dimensions of effective hubs. PubMed, OVID Medline and PyschINFO ... ...

Abstract	This review assesses the effectiveness of integrated primary health and social care hubs on mental health outcomes for children experiencing adversity and describes common integration dimensions of effective hubs. PubMed, OVID Medline and PyschINFO databases were systematically searched for relevant articles between 2006-2020 that met the inclusion criteria: (i) interventional studies, (ii) an integrated approach to mental health within a primary health care setting, (iii) validated measures of child mental health outcomes, and (iv) in English language. Of 5961 retrieved references, four studies involving children aged 0-12 years experiencing one or more adversities were included. Most children were male (mean: 60.5%), and Hispanic or African American (82.5%). Three studies with low-moderate risk of bias reported improvements in mental health outcomes for children experiencing adversity receiving integrated care. The only RCT in this review did not show significant improvements. The most common dimensions of effective integrated hubs based on the Rainbow Model of Integrated Care were clinical integration (including case management, patient-centred care, patient education, and continuity of care), professional integration, and organisational integration including co-location. These results suggest hubs incorporating effective integration dimensions could improve mental health outcomes for children experiencing adversity; however, further robust studies are required.
Language	English
Publishing date	2022-06-17
Publishing country	England
Document type	Journal Article
ZDB-ID	2119289-3
ISSN	1568-4156
ISSN	1568-4156
DOI	10.5334/ijic.6425
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Article ; Online: Carer perspectives of a transition to adult care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities.

Culnane, Evelyn / Efron, Daryl / Williams, Katrina / Marraffa, Catherine / Antolovich, Giuliana / Prakash, Chidambaram / Loftus, Hayley

Child: care, health and development

2022 Volume 49, Issue 2, Page(s) 281–291

Abstract: Background: Transition to adult care for adolescents with an intellectual disability and/or autism spectrum disorder with coexisting mental health disorders, often termed 'dual disability', is complex. It requires a family-centred approach, with ... ...

Abstract	Background: Transition to adult care for adolescents with an intellectual disability and/or autism spectrum disorder with coexisting mental health disorders, often termed 'dual disability', is complex. It requires a family-centred approach, with collaboration among health, disability and social services and early planning. Aim: To describe carer perspectives of transition to adult care and the outcomes of a transition support intervention, Fearless, Tearless Transition, for adolescents with dual disabilities piloted at a tertiary children's hospital. Methods: Carers of adolescents with a dual disability were invited to complete a survey at the commencement of their participation in the Fearless, Tearless Transition model, and again at the conclusion of the project. Within this intervention, carers and adolescents were encouraged to attend dedicated transition clinics and participate in a shared care general practitioner (GP) and paediatrician process. Results: One hundred and fifty-one carers of adolescents with dual disabilities were included in Fearless, Tearless Transition. Of this cohort, 138 adolescents and their carers received support in a dedicated transition clinic with 99 carers completing the initial survey at the commencement of the model. Eighty-two per cent of carers reported moderate to high levels of anxiety about transitioning from paediatric to adult care with 39% feeling 'unprepared' about transition. Eighty-one per cent reported having inadequate access to respite care with 47% reporting a lack of access to services in the community and 56% expressing dissatisfaction with their GPs. One hundred and two families participated in the shared care process with 80 GPs and 33 paediatricians. Twenty-two carers completed the second survey reporting a modest but significant improvement in preparedness for transition to adult care. Conclusion: This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early, centralized transition planning, consistent methods of assessing adolescent and carer needs and shared care.
MeSH term(s)	Adult ; Humans ; Adolescent ; Child ; Mental Health ; Caregivers/psychology ; Transition to Adult Care ; Intellectual Disability/therapy ; Autism Spectrum Disorder/therapy
Language	English
Publishing date	2022-08-18
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	223039-2
ISSN	1365-2214 ; 0305-1862
ISSN (online)	1365-2214
ISSN	0305-1862
DOI	10.1111/cch.13040
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Article ; Online: Survival of individuals with cerebral palsy in Victoria, Australia: A longitudinal cohort study spanning four decades.

Hinwood, Gina L / Loftus, Hayley / Shepherd, Daisy A / Guzys, Angela / Reddihough, Dinah S / Reid, Susan M

Developmental medicine and child neurology

2022 Volume 65, Issue 4, Page(s) 580–587

Abstract: Aim: To provide an updated description of the rates, trends, and predictors of mortality of individuals with cerebral palsy (CP), born in the Australian state of Victoria between 1970 and 2012.: Method: Data were extracted for 4807 individuals (2091 ... ...

Abstract	Aim: To provide an updated description of the rates, trends, and predictors of mortality of individuals with cerebral palsy (CP), born in the Australian state of Victoria between 1970 and 2012. Method: Data were extracted for 4807 individuals (2091 females; 2716 males). The probability of survival to 30th June 2017 was calculated using the Kaplan-Meier method. Mortality rates were calculated per 1000 person-years using age strata and compared with population mortality rates to produce mortality ratios. Cox proportional hazards regression was used to calculate hazard ratios for selected demographic and clinical characteristics and to estimate the effect of birth epoch on 15-year survival. Results: There were 666 recorded deaths. Compared to the general population, mortality was higher for all persons with CP and highest for children aged 1 to 15 years (45-62 times). We observed 35% improvement in the probability of survival to 15 years for births in the 2000s relative to the 1970s (hazard ratio 0.65, 95% confidence interval [CI] 0.49, 0.86), but only 4% improvement for the subgroup with complex CP (hazard ratio 0.96, 95% CI 0.69, 1.33). Interpretation: The observed improvements in survival for those born in the 2000s is likely related predominantly to a proportional reduction in complex CP within the cohort. What this paper adds: Length of survival improved for Australians with cerebral palsy (CP) born this millennium. Improved survival was mainly because of a proportional reduction in complex CP. A small improvement in length of survival was seen for children with complex CP.
MeSH term(s)	Child ; Male ; Female ; Humans ; Victoria ; Longitudinal Studies ; Cerebral Palsy/epidemiology ; Proportional Hazards Models
Language	English
Publishing date	2022-09-26
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	80369-8
ISSN	1469-8749 ; 0012-1622
ISSN (online)	1469-8749
ISSN	0012-1622
DOI	10.1111/dmcn.15420
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Article ; Online: Prioritising interventions for preventing mental health problems for children experiencing adversity: a modified nominal group technique Australian consensus study.

Hall, Teresa / Honisett, Suzy / Paton, Kate / Loftus, Hayley / Constable, Leanne / Hiscock, Harriet

BMC psychology

2021 Volume 9, Issue 1, Page(s) 165

Abstract: Background: Despite the well-established link between childhood adversity and mental health problems, there is a dearth of evidence to inform decision making about the most acceptable and feasible interventions for preventing mental health problems for ... ...

Abstract	Background: Despite the well-established link between childhood adversity and mental health problems, there is a dearth of evidence to inform decision making about the most acceptable and feasible interventions for preventing mental health problems for children experiencing adversity. Expert consensus is an important input into evidence-informed policy and practice but is often employed at the national level which misses important local contextual factors shaping decision making. This study aimed to: (1) reach consensus on local priority interventions for preventing mental health problems for children living with adversity in Wyndham, Victoria; and (2) understand the enabling factors and barriers to implementing these interventions. Methods: This study employed six online modified nominal group technique (NGT) workshops with 19 stakeholders; intersectoral service providers from health, social and education sectors and caregivers of children aged 0-8 years. Results: Three interventions reached consensus among the mixed stakeholder groups as being a high or very high priority for implementation in Wyndham: nurse home visiting, parenting programs and community-wide programs. Key rationales were the ability for these interventions to act as a gateway for families to increase their knowledge about topics immediately relevant to them (i.e. parenting), increase their knowledge about available supports and build relationships with service providers. Conclusions: Local priorities for preventing mental health problems for children living with adversity emphasized relational approaches to service provision and were shaped by the availability of existing interventions and supports in the locality. The NGT was found to be an effective method for prioritising evidence-based practice interventions in health settings, engaging local stakeholders, and identifying enablers and barriers to implementation.
MeSH term(s)	Australia ; Caregivers ; Child ; Consensus ; Humans ; Mental Health ; Parenting
Language	English
Publishing date	2021-10-24
Publishing country	England
Document type	Journal Article
ZDB-ID	2705921-2
ISSN	2050-7283 ; 2050-7283
ISSN (online)	2050-7283
ISSN	2050-7283
DOI	10.1186/s40359-021-00652-0
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Article ; Online: Enabling successful transition-Evaluation of a transition to adult care program for pediatric liver transplant recipients.

Culnane, Evelyn / Loftus, Hayley / Peters, Rebecca / Haydar, Madeleine / Hodgson, Alexandra / Herd, Lauren / Hardikar, Winita

Pediatric transplantation

2021 Volume 26, Issue 3, Page(s) e14213

Abstract: Background: This study aimed to evaluate the transition to adult care program instituted for liver transplant recipients (LTRs) at a large tertiary pediatric hospital in Melbourne, Australia. Evaluation included the change in a Global Assessment Measure ...

Abstract	Background: This study aimed to evaluate the transition to adult care program instituted for liver transplant recipients (LTRs) at a large tertiary pediatric hospital in Melbourne, Australia. Evaluation included the change in a Global Assessment Measure (GAM) before and after the transition program, satisfaction with the program, and measures of transition success including rejection rates and attendance at appointments post-transfer. We hypothesized that the introduction of our structured transition program would improve disease understanding, health system understanding, and self-care. We also hypothesized that those who had undergone the transition program would have lower failure to attend rates and lower rates of rejection than historical controls. Methods: A LTR transition program was instituted at our service from 2013 to 2015. The program involved initial assessment of competencies with a Global Assessment Measure (GAM), followed by the introduction of a personalized goal setting program addressing issues identified in dedicated transition clinics. Assessment of competencies was compared between the commencement of the program and immediately prior to transfer. Patient satisfaction with the transition process was assessed at an interview 6-12 months after transfer to the adult service. Rejection rates and failure to attend rates were compared between the intervention group and a group of LTRs who did not receive the intervention. Results: Twenty-eight LTRs participated in the study; 20 received the transition intervention and 8 served as controls. Within the intervention group, all domains of transition competency and reported anxiety regarding transferring had significantly improved at the conclusion of the intervention and all reported satisfaction with the transition program with most (81%) reporting readiness to transfer. There were no significant differences in rejection rates or failure to attend rates between those who did and did not receive the transition intervention. Conclusion: A longitudinal holistic transition program has the potential to positively impact the competencies and readiness of LTRs to successful transition and transfer to adult care.
MeSH term(s)	Adult ; Australia ; Child ; Humans ; Liver Transplantation ; Self Care ; Transition to Adult Care ; Transplant Recipients
Language	English
Publishing date	2021-12-30
Publishing country	Denmark
Document type	Journal Article
ZDB-ID	1390284-2
ISSN	1399-3046 ; 1397-3142
ISSN (online)	1399-3046
ISSN	1397-3142
DOI	10.1111/petr.14213
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Article: Do Australian policies enable a primary health care system to identify family adversity and subsequently support these families-A scoping study.

Honisett, Suzy / Loftus, Hayley / Liu, HueiMing / Montgomery, Alicia / De Souza, Denise / Hall, Teresa / Eastwood, John / Hiscock, Harriet / Goldfeld, Sharon

Health promotion journal of Australia : official journal of Australian Association of Health Promotion Professionals

2022 Volume 34, Issue 1, Page(s) 211–221

Abstract: Issue addressed: To determine if Australian policies support a primary health care system to identify family adversity and subsequently support these families.: Methods: Two methodological approaches were used: (i) a scoping review of Australian ... ...

Abstract	Issue addressed: To determine if Australian policies support a primary health care system to identify family adversity and subsequently support these families. Methods: Two methodological approaches were used: (i) a scoping review of Australian federal and two states (Victoria and New South Wales) policies related to family adversity (e.g., childhood maltreatment or household dysfunction, such as parental mental illness); (ii) thirteen semi-structured interviews with Victorian Community Health Service (CHS) staff and government policy makers, recruited via snowball sampling to understand the context of policy making and service implementation. Data collected were subsequently discussed in relation to the Stages Model of policy analysis. Results: One hundred and eighty-eight policies referenced family adversity. Of these, 37 policies met all eligibility criteria including a focus on early intervention within primary care and were included in the review. Most policies were developed within health departments (78%) and included a wide range of adversities, with the majority based within maternal and child health and CHS platforms. Most policy development included consultation with stakeholders. Although most policies received some level of funding, few included funding details and only a third included evaluation. Conclusions: There are many policies related to family adversity in Australia, with most focused within existing primary care platforms. Given these policies, Australia should be well positioned to identify and respond to family adversity. So what: More work needs to be done to ensure policies are adequately implemented, evaluated and transparently and appropriately funded. The co-occurrence of adversity should focus policy action; and potentially lead to more effective and efficient outcomes.
MeSH term(s)	Child ; Humans ; Delivery of Health Care ; New South Wales ; Community Health Services ; Policy ; Victoria
Language	English
Publishing date	2022-12-12
Publishing country	Australia
Document type	Review ; Journal Article
ZDB-ID	2250864-8
ISSN	2201-1617 ; 1036-1073
ISSN (online)	2201-1617
ISSN	1036-1073
DOI	10.1002/hpja.684
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Article ; Online: Bridge study protocol: an international, observational cohort study on the transition of healthcare for adolescents with chronic conditions.

Kosola, Silja / Culnane, Evelyn / Loftus, Hayley / Tornivuori, Anna / Kallio, Mira / Telfer, Michelle / Miettinen, Päivi J / Kolho, Kaija-Leena / Aalto, Kristiina / Raivio, Taneli / Sawyer, Susan

BMJ open

2021 Volume 11, Issue 6, Page(s) e048340

Abstract: Introduction: More than 10% of adolescents live with a chronic disease or disability that requires regular medical follow-up as they mature into adulthood. During the first 2 years after adolescents with chronic conditions are transferred to adult ... ...

Abstract	Introduction: More than 10% of adolescents live with a chronic disease or disability that requires regular medical follow-up as they mature into adulthood. During the first 2 years after adolescents with chronic conditions are transferred to adult hospitals, non-adherence rates approach 70% and emergency visits and hospitalisation rates significantly increase. The purpose of the Bridge study is to prospectively examine associations of transition readiness and care experiences with transition success: young patients' health, health-related quality of life (HRQoL) and adherence to medical appointments as well as costs of care. In addition, we will track patients' growing independence and educational and employment pathways during the transition process. Methods and analysis: Bridge is an international, prospective, observational cohort study. Study participants are adolescents with a chronic health condition or disability and their parents/guardians who attended the New Children's Hospital in Helsinki, Finland, or the Royal Children's Hospital (RCH) in Melbourne, Australia. Baseline assessment took place approximately 6 months prior to the transfer of care and follow-up data will be collected 1 year and 2 years after the transfer of care. Data will be collected from patients' hospital records and from questionnaires completed by the patient and their parent/guardian at each time point. The primary outcomes of this study are adherence to medical appointments, clinical health status and HRQoL and costs of care. Secondary outcome measures are educational and employment outcomes. Ethics and dissemination: The Ethics Committee for Women's and Children's Health and Psychiatry at the Helsinki University Hospital (HUS/1547/2017) and the RCH Human Research Ethics Committee (38035) have approved the Bridge study protocol. Results will be published in international peer-reviewed journals and summaries will be provided to the funders of the study as well as patients and their parents/guardians. Trial registration number: NCT04631965.
MeSH term(s)	Adolescent ; Adult ; Humans ; Young Adult ; Australia ; Child Health ; Chronic Disease ; Delivery of Health Care ; Finland ; Observational Studies as Topic ; Prospective Studies ; Quality of Life ; Women's Health
Language	English
Publishing date	2021-06-21
Publishing country	England
Document type	Clinical Trial Protocol ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2599832-8
ISSN	2044-6055 ; 2044-6055
ISSN (online)	2044-6055
ISSN	2044-6055
DOI	10.1136/bmjopen-2020-048340
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