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2. Exploring grandparenthood in the context of grandchild disability : intergenerational perspectives

Author

Merrick, Hannah Marie

Abstract

Available evidence indicates that grandparents can play a crucial role in the support of their grandchildren with a disability, their adult children and the entire family unit. Shifts in family relationships and roles, demographics and broader contexts are placing greater importance on the role of grandparents. The lived experience of grandparenting in the context of grandchild disability has received scant attention in research, policy or practice, particularly in the UK, yet advances in neonatal and paediatric care have resulted in more children surviving with disabling conditions. This qualitative study aimed to explore the role of grandparents in the lives of children with a disability from their perspective and that of the parents, and to understand the impact of ageing on the dynamics of intergenerational support. In-depth interviews were conducted with grandparents (n=21) and parents (n=11) of children aged 4-19 years with disabilities including autism spectrum disorder, cerebral palsy, and congenital disorders. Three overarching themes were identified: experiences of diagnosis and family adaptation, maintaining intergenerational harmony, and changes in the dynamics of care with age. Grandparents were a vital source of support, aiding families to adapt and continually adjust to the needs of the grandchild. Grandparents, however, also recounted their own hardships, which included financial challenges, long hours of care, and lack of engagement in third age activities. Capturing both parent and grandparent perspectives demonstrated extensive intergenerational negotiation, and at times conflict, around employment, role boundaries, types of support, and the emotional work in maintaining intergenerational harmony. Intergenerational support shifted and was continually renegotiated across the lifecourse trajectory. As well as giving voice to a previously under-researched group, these findings inform key debates, such as how extending working life policies can impact on families with disabled children.

Published
2020

3. Policy and practice recommendations for services for disabled children during emergencies: Learning from COVID‐19.

Author

Merrick, Hannah, Morris, Christopher, Allard, Amanda, Parr, Jeremy R., and Pennington, Lindsay

Subjects
*YOUNG adults, *CHILDREN with disabilities, *CHILD services, *QUALITATIVE research, *FAMILIES, *CHILD caregivers
Abstract

Aim Method Results Interpretation To seek consensus on recommendations for the delivery of services to disabled children in England during future emergencies.Candidate recommendations were drafted based on our related mapping review and qualitative research related to experiences during the COVID‐19 pandemic. Iterative workshops with professionals and parent carers helped to refine the recommendations. A Delphi survey, rating the importance of each recommendation, was conducted with (1) parent carers of disabled children, (2) disabled young people aged 8 to 19 years, and (3) health, education, and social care professionals. A consensus meeting was convened online to discuss the findings and ratify the recommendations.Twenty‐eight recommendations were included in the Delphi survey. There were 141 participants in round 1 and 91 in round 2. Seven recommendations reached the agreed consensus criteria for being critical across all stakeholder groups, while 21 recommendations did not reach consensus across all groups. Fourteen participants ratified 23 recommendations, which when aggregated and refined further produced our final 19 recommendations.Reductions in services for disabled children and their families during the COVID‐19 pandemic had serious and lasting consequences. This study enabled parent carers, disabled young people, and health, education, and social care professionals to agree recommendations on services for disabled children during future emergencies. [ABSTRACT FROM AUTHOR]

Published
2024
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9. Impacts of health care service changes implemented due to COVID‐19 on children and young people with long‐term disability: A mapping review.

Author

Merrick, Hannah, Driver, Helen, Main, Chloe, Kenny, Ryan P. W., Richmond, Catherine, Allard, Amanda, Bola, Kulwinder, Morris, Christopher, Parr, Jeremy R., Pearson, Fiona, Pennington, Lindsay, Exley, Cath, Teare, Dawn, Yu, Ge, Carr, Sara, Haining, Shona, Platts, Lesley, Gray, Laura, and Heslop, Philip

Subjects
*CHILDREN with disabilities, *YOUNG adults, *MEDICAL care, *MENTAL health services, *PEOPLE with disabilities, *COVID-19 pandemic
Abstract

Aim: To identify the research on childhood disability service adaptations and their impact on children and young people with long‐term disability during the COVID‐19 pandemic. Method: A mapping review was undertaken. We searched the World Health Organization Global COVID‐19 database using the search terms 'children', 'chronic/disabling conditions', and 'services/therapies'. Eligible papers reported service changes for children (0–19 years) with long‐term disability in any geographical or clinical setting between 1st January 2020 and 26th January 2022. Papers were charted across the effective practice and organization of care taxonomy of health system interventions and were narratively synthesized; an interactive map was produced. Results: Reduction of face‐to‐face care and usual provision had a huge impact on children and families. Adoption of telehealth provided continuity for the care and management of some conditions. There was limited evidence of changes to mental health services, transitions of care, social care, or child‐reported satisfaction or acceptability of service changes. Interpretation: The long‐term impacts of service change during the pandemic need full evaluation. However, widespread disruption seems to have had a profound impact on child and carer health and well‐being. Service recovery needs to be specific to the individual needs of children with a disability and their families. This should be done through coproduction to ensure that service changes meet needs and are accessible and equitable. [ABSTRACT FROM AUTHOR]

Published
2023
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10. Assessment of the impact of changes to health care services for children with chronic disability that have been implemented in response to COVID-19: A scoping review protocol

Author

Driver, Helen, Merrick, Hannah, 1, Catherine, 1, Ryan, and Pearson, Fiona

Subjects
Scoping review, nervous system, genetic structures, musculoskeletal, neural, and ocular physiology, Service change, Covid-19, psychological phenomena and processes, disabled children
Abstract

Recovery, Renewal and Reset of Services to Disabled Children

Published
2022
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16. Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme

Author

Colver, Allan, primary, Rapley, Tim, additional, Parr, Jeremy R, additional, McConachie, Helen, additional, Dovey-Pearce, Gail, additional, Couteur, Ann Le, additional, McDonagh, Janet E, additional, Bennett, Caroline, additional, Hislop, Jennifer, additional, Maniatopoulos, Gregory, additional, Mann, Kay D, additional, Merrick, Hannah, additional, Pearce, Mark S, additional, Reape, Debbie, additional, and Vale, Luke, additional

Published
2019
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18. Characteristics of young people with long term conditions close to transfer to adult health services

Author

Merrick, Hannah, McConachie, Helen, Le Couteur, Ann, Mann, Kay, Parr, Jeremy R, Pearce, Mark S, Colver, Allan, Transition Collaborative Group, Owens, Julie-Anne, Merrick, Hannah, McConachie, Helen, Le Couteur, Ann, Mann, Kay, Parr, Jeremy R, Pearce, Mark S, Colver, Allan, Transition Collaborative Group, and Owens, Julie-Anne

Abstract

BACKGROUND: For many young people with long term conditions (LTC), transferring from paediatric to adult health services can be difficult and outcomes are often reported to be poor. We report the characteristics and representativeness of three groups of young people with LTCs as they approach transfer to adult services: those with autism spectrum disorder with additional mental health problems (ASD); cerebral palsy (CP); or diabetes. METHODS: Young people aged 14 years-18 years 11 months with ASD, or those with diabetes were identified from children's services and those with CP from population databases. Questionnaires, completed by the young person and a parent, included the 'Mind the Gap' Scale, the Rotterdam Transition Profile, and the Warwick and Edinburgh Mental Wellbeing Scale. RESULTS: Three hundred seventy four young people joined the study; 118 with ASD, 106 with CP, and 150 with diabetes. Participants had a significant (p < 0.001) but not substantial difference in socio-economic status (less deprived) compared to those who declined to take part or did not respond. Condition-specific severity of participants was similar to that of population data. Satisfaction with services was good as the 'gap' scores (the difference between their ideal and current care) reported by parents and young people were small. Parents' satisfaction was significantly lower than their children's (p < 0.001). On every domain of the Rotterdam Transition Profile, except for education and employment, significant differences were found between the three groups. A larger proportion of young people with diabetes were in a more independent phase of participation than those with ASD or CP. The wellbeing scores of those with diabetes (median = 53, IQR: 47-58) and CP (median = 53, IQR: 48-60) were similar, and significantly higher than for those with ASD (median = 47, IQR: 41-52; p < 0.001). CONCLUSION

Published
2015

19. The Hospital Anxiety and Depression scale: Factor structure and psychometric properties in older adolescents and young adults with autism spectrum disorder.

Author

Uljarević, Mirko, Richdale, Amanda L., McConachie, Helen, Hedley, Darren, Cai, Ru Ying, Merrick, Hannah, Parr, Jeremy R., and Le Couteur, Ann

Abstract

Despite the high frequency of anxiety and depression symptoms in individuals with Autism Spectrum Disorder (ASD) and a significant impact of these comorbidities on both individuals with ASD and their families, research on the validity of anxiety and depression measures in the ASD population is currently lacking. The aim of this study was to explore the psychometric properties of the Hospital Anxiety and Depression Scale [HADS; Zigmond & Snaith, ] in a sample of older adolescents and young adults with ASD. One hundred and fifty one participants (UK Transition longitudinal study: N = 106; 75 males, Mage = 16.04 years, SD = 1.28; Longitudinal Study of Australian Schools Leavers with ASD: N = 45, 30 males; Mage = 18.35 years, SD = 2.55) completed the HADS and a range of mental health and well‐being measures. Combination of the Principal Component Analysis and Parallel Analysis indicated two factors as an optimal solution in our sample, accounting for 43.77% of variance with factors being identical in terms of content with the structure found in the general population. Internal consistency was good for the HADS anxiety scale (HADS‐A; .82–.84) and acceptable for the HADS depression scale (HADS‐D; .60–.72). Convergent validity of both HADS‐A and HADS‐D scales was excellent and divergent validity was acceptable. Our study represents a significant contribution to the literature by providing an initial validation of the HADS in older adolescents and younger adults with ASD. Autism Res2018, 11: 258–269. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. Lay Summary: Research on the validity of measurement of anxiety and depression in ASD is currently lacking. The aim of this study was to explore the properties of the Hospital Anxiety and Depression Scale (HADS) in a sample of 151 young people with ASD. Participants completed HADS and a range of mental health and well‐being measures. Encouragingly, our findings suggest that HADS provides a reliable and valid assessment of anxiety and depression in ASD. [ABSTRACT FROM AUTHOR]

Published
2018
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23. Professional perspectives on facilitators and barriers for high quality provision of health, education and social care services to disabled children in England during the COVID-19 pandemic: a qualitative study.

Author

Merrick H, Driver H, Main C, Potts L, Russell S, Exley C, Allard A, Morris C, Parr JR, and Pennington L

Subjects
Humans, England epidemiology, Child, SARS-CoV-2, Male, Female, Pandemics, Child Health Services organization & administration, Child Health Services standards, Focus Groups, Interviews as Topic, Attitude of Health Personnel, Health Personnel psychology, COVID-19 epidemiology, Disabled Children, Qualitative Research, Social Work organization & administration
Abstract

Objectives: To understand how health, education and social care services for disabled children changed during the COVID-19 pandemic, what did or did not work well and what the impacts of service changes were on both professionals and families., Design: Qualitative study using semistructured interviews., Setting: Telephone and video call interviews and focus groups with professionals working in one of five local authority areas in England., Participants: 78 health, education and social care professionals working with children in one of five local authority areas in England., Results: There was a significant disruption to services and reduced contact with families during the early stages of the pandemic; nevertheless, professionals were able to reflect on innovative ways they interacted with and sought to support and maintain health, education and social care provision to disabled children and their families. As waitlists have substantially increased, this and the longevity of the pandemic were perceived to have had negative consequences for staff health and well-being, the health and psychosocial outcomes of children and young people, and their parent carers., Conclusions: Key learning from this study for service recovery and planning for future emergencies is the need to be able to identify disabled children, classify their level of need and risk, assess the impact of loss of services and maintain clear communication across services to meet the needs of disabled children. Finally, services need to work collaboratively with families to develop child-centred care to strengthen resilience during service disruption., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Published
2024
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24. Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme

Author

Colver A, Rapley T, Parr JR, McConachie H, Dovey-Pearce G, Le Couteur A, McDonagh JE, Bennett C, Hislop J, Maniatopoulos G, Mann KD, Merrick H, Pearce MS, Reape D, and Vale L

Abstract

Background: As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700., Objectives: Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition. Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effective and efficient features of transitional health care and (3) to determine how transitional health care should be commissioned and provided., Design, Settings and Participants: Three work packages addressed each objective. Objective 1. (i) A young people’s advisory group met monthly throughout the programme. (ii) It explored the usefulness of patient-held health information. (iii) A ‘Q-sort’ study examined how young people approached transitional health care. Objective 2. (i) We followed, for 3 years, 374 young people with type 1 diabetes mellitus (150 from five sites in England), autism spectrum disorder (118 from four sites in England) or cerebral palsy (106 from 18 sites in England and Northern Ireland). We assessed whether or not nine proposed beneficial features (PBFs) of transitional health care predicted better outcomes. (ii) We interviewed a subset of 13 young people about their transition. (iii) We undertook a discrete choice experiment and examined the efficiency of illustrative models of transition. Objective 3. (i) We interviewed staff and observed meetings in three trusts to identify the facilitators of and barriers to introducing developmentally appropriate health care (DAH). We developed a toolkit to assist the introduction of DAH. (ii) We undertook a literature review, interviews and site visits to identify the facilitators of and barriers to commissioning transitional health care. (iii) We synthesised learning on ‘what’ and ‘how’ to commission, drawing on meetings with commissioners., Main Outcome Measures: Participation in life situations, mental well-being, satisfaction with services and condition-specific outcomes., Strengths: This was a longitudinal study with a large sample; the conditions chosen were representative; non-participation and attrition appeared unlikely to introduce bias; the research on commissioning was novel; and a young person’s group was involved., Limitations: There is uncertainty about whether or not the regions and trusts in the longitudinal study were representative; however, we recruited from 27 trusts widely spread over England and Northern Ireland, which varied greatly in the number and variety of the PBFs they offered. The quality of delivery of each PBF was not assessed. Owing to the nature of the data, only exploratory rather than strict economic modelling was undertaken., Results and Conclusions: (1) Commissioners and providers regarded transition as the responsibility of children’s services. This is inappropriate, given that transition extends to approximately the age of 24 years. Our findings indicate an important role for commissioners of adults’ services to commission transitional health care, in addition to commissioners of children’s services with whom responsibility for transitional health care currently lies. (2) DAH is a crucial aspect of transitional health care. Our findings indicate the importance of health services being commissioned to ensure that providers deliver DAH across all health-care services, and that this will be facilitated by commitment from senior provider and commissioner leaders. (3) Good practice led by enthusiasts rarely generalised to other specialties or to adults’ services. This indicates the importance of NHS Trusts adopting a trust-wide approach to implementation of transitional health care. (4) Adults’ and children’s services were often not joined up. This indicates the importance of adults’ clinicians, children’s clinicians and general practitioners planning transition procedures together. (5) Young people adopted one of four broad interaction styles during transition: ‘laid back’, ‘anxious’, ‘wanting autonomy’ or ‘socially oriented’. Identifying a young person’s style would help personalise communication with them. (6) Three PBFs of transitional health care were significantly associated with better outcomes: ‘parental involvement, suiting parent and young person’, ‘promotion of a young person’s confidence in managing their health’ and ‘meeting the adult team before transfer’. (7) Maximal service uptake would be achieved by services encouraging appropriate parental involvement with young people to make decisions about their care. A service involving ‘appropriate parental involvement’ and ‘promotion of confidence in managing one’s health’ may offer good value for money., Future Work: How might the programme’s findings be implemented by commissioners and health-care providers? What are the most effective ways for primary health care to assist transition and support young people after transfer?, Study Registration: This study is registered as UKCRN 12201, UKCRN 12980, UKCRN 12731 and UKCRN 15160., Funding: The National Institute for Health Research Programme Grants for Applied Research programme., (Copyright © Queen’s Printer and Controller of HMSO 2019. This work was produced by Colver et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.)

Published
2019
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25. The Hospital Anxiety and Depression scale: Factor structure and psychometric properties in older adolescents and young adults with autism spectrum disorder.

Author

Uljarević M, Richdale AL, McConachie H, Hedley D, Cai RY, Merrick H, Parr JR, and Le Couteur A

Subjects
Adolescent, Anxiety Disorders psychology, Attention Deficit Disorder with Hyperactivity diagnosis, Attention Deficit Disorder with Hyperactivity psychology, Australia, Autism Spectrum Disorder psychology, Comorbidity, Depressive Disorder psychology, Female, Humans, Longitudinal Studies, Male, Principal Component Analysis, United Kingdom, Young Adult, Anxiety Disorders diagnosis, Autism Spectrum Disorder diagnosis, Depressive Disorder diagnosis, Psychometrics statistics & numerical data, Surveys and Questionnaires
Abstract

Despite the high frequency of anxiety and depression symptoms in individuals with Autism Spectrum Disorder (ASD) and a significant impact of these comorbidities on both individuals with ASD and their families, research on the validity of anxiety and depression measures in the ASD population is currently lacking. The aim of this study was to explore the psychometric properties of the Hospital Anxiety and Depression Scale [HADS; Zigmond & Snaith, ] in a sample of older adolescents and young adults with ASD. One hundred and fifty one participants (UK Transition longitudinal study: N = 106; 75 males, M age  = 16.04 years, SD = 1.28; Longitudinal Study of Australian Schools Leavers with ASD: N = 45, 30 males; M age  = 18.35 years, SD = 2.55) completed the HADS and a range of mental health and well-being measures. Combination of the Principal Component Analysis and Parallel Analysis indicated two factors as an optimal solution in our sample, accounting for 43.77% of variance with factors being identical in terms of content with the structure found in the general population. Internal consistency was good for the HADS anxiety scale (HADS-A; .82-.84) and acceptable for the HADS depression scale (HADS-D; .60-.72). Convergent validity of both HADS-A and HADS-D scales was excellent and divergent validity was acceptable. Our study represents a significant contribution to the literature by providing an initial validation of the HADS in older adolescents and younger adults with ASD. Autism Res 2018, 11: 258-269. © 2017 International Society for Autism Research, Wiley Periodicals, Inc., Lay Summary: Research on the validity of measurement of anxiety and depression in ASD is currently lacking. The aim of this study was to explore the properties of the Hospital Anxiety and Depression Scale (HADS) in a sample of 151 young people with ASD. Participants completed HADS and a range of mental health and well-being measures. Encouragingly, our findings suggest that HADS provides a reliable and valid assessment of anxiety and depression in ASD., (© 2017 International Society for Autism Research, Wiley Periodicals, Inc.)

Published
2018
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26. Characteristics of young people with long term conditions close to transfer to adult health services.

Author

Merrick H, McConachie H, Le Couteur A, Mann K, Parr JR, Pearce MS, and Colver A

Subjects
Adolescent, Educational Status, Employment statistics & numerical data, Female, Health Services statistics & numerical data, Health Status, Humans, Long-Term Care, Male, Mental Disorders therapy, Mental Health, Patient Satisfaction, Surveys and Questionnaires, Autism Spectrum Disorder therapy, Cerebral Palsy therapy, Diabetes Mellitus therapy, Transition to Adult Care
Abstract

Background: For many young people with long term conditions (LTC), transferring from paediatric to adult health services can be difficult and outcomes are often reported to be poor. We report the characteristics and representativeness of three groups of young people with LTCs as they approach transfer to adult services: those with autism spectrum disorder with additional mental health problems (ASD); cerebral palsy (CP); or diabetes., Methods: Young people aged 14 years-18 years 11 months with ASD, or those with diabetes were identified from children's services and those with CP from population databases. Questionnaires, completed by the young person and a parent, included the 'Mind the Gap' Scale, the Rotterdam Transition Profile, and the Warwick and Edinburgh Mental Wellbeing Scale., Results: Three hundred seventy four young people joined the study; 118 with ASD, 106 with CP, and 150 with diabetes. Participants had a significant (p < 0.001) but not substantial difference in socio-economic status (less deprived) compared to those who declined to take part or did not respond. Condition-specific severity of participants was similar to that of population data. Satisfaction with services was good as the 'gap' scores (the difference between their ideal and current care) reported by parents and young people were small. Parents' satisfaction was significantly lower than their children's (p < 0.001). On every domain of the Rotterdam Transition Profile, except for education and employment, significant differences were found between the three groups. A larger proportion of young people with diabetes were in a more independent phase of participation than those with ASD or CP. The wellbeing scores of those with diabetes (median = 53, IQR: 47-58) and CP (median = 53, IQR: 48-60) were similar, and significantly higher than for those with ASD (median = 47, IQR: 41-52; p < 0.001)., Conclusions: Having established that our sample of young people with one of three LTCs recruited close to transfer to adult services was representative, we have described aspects of their satisfaction with services, participation and wellbeing, noting similarities and differences by LTC. This information about levels of current functioning is important for subsequent evaluation of the impact of service features on the health and wellbeing of young people with LTCs following transfer from child services to adult services.

Published
2015
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