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Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term...
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Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions

A special issue of Children (ISSN 2227-9067).

Deadline for manuscript submissions: closed (20 October 2021) | Viewed by 21589

Special Issue Editors

Prof. Dr. Veronica Lambert

E-Mail Website
Guest Editor
School of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City University, Dublin 9, Ireland
Interests: children- and family-focused research; child and family communication; shared self-management of long-term/chronic conditions; psychosocial wellbeing
Prof. Dr. Veronica Swallow

E-Mail Website
Guest Editor
Department of Nursing & Midwifery, College of Health, Wellbeing & Life Sciences, Sheffield Hallam University, City Campus, Howard Street, Sheffield, S1 1WB, UK
Interests: co-production and evaluation of user-led interventions to promote optimum psychosocial outcomes for children and families living with long-term/chronic conditions

Special Issue Information

Dear Colleagues,

Over the last decade, the number of children and adolescents living with chronic (or long-term) health conditions has risen worldwide. Living with a chronic health condition in childhood can be a cause for significant burden and persistent stress for children, adolescents and their families, and can result in lasting emotional and social consequences that impact daily life, functioning and wellbeing. For instance, many children and adolescents with chronic health conditions struggle with self-esteem, body image, social role definitions, peer-related issues, and can experience difficulty in coping emotionally with their condition, thus placing them at an increased risk of suffering from psychological disorders. Because the successful management of chronic health conditions in childhood and adolescence can significantly impact condition outcomes in adulthood, focusing on psychosocial interventions in childhood and adolescence is of increasing importance.

The goal of this Special Issue in Children is to highlight the recent advances in psychosocial interventions for children and adolescents living with a range of chronic health conditions. We welcome original research considering novel approaches, including user-centred design and technology-based interventions, in which the primary target is the child and/or adolescent, with a focus on improving their clinical and psychosocial functioning outcomes. Recognising the impact childhood chronic illness can have on the entire family system, we welcome intervention approaches that also include parents and/or other extended family members, and/or peer involvement. We also invite submissions that report on the intervention development and mapping process and/or methodological papers that report on process evaluations, for example. Additionally, we welcome original systematic reviews of psychosocial interventions for childhood chronic health conditions that identify gaps in the knowledge and/or review the scientific development of interventions for children and adolescents with chronic health conditions.

We look forward to receiving your contributions.

Prof. Dr. Veronica Lambert
Prof. Dr. Veronica Swallow
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • psychosocial
  • intervention
  • child/children
  • adolescent
  • young people
  • chronic/long-term condition
  • health
  • wellbeing

Published Papers (7 papers)

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Research

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12 pages, 645 KiB  
Article
Utilization of Psychotherapeutic Interventions by Pediatric Psychosocial Providers
by Cynthia Fair, Amanda Thompson, Marie Barnett, Stacy Flowers, June Burke and Lori Wiener
Children 2021, 8(11), 1045; https://0-doi-org.brum.beds.ac.uk/10.3390/children8111045 - 12 Nov 2021
Cited by 4 | Viewed by 2037
Abstract
One of the Standards of Psychosocial Care for Children with Cancer and their Families recommends that all youth with cancer and their family members have access to psychotherapeutic interventions and support throughout the cancer trajectory. This study was created to identify the psychosocial [...] Read more.
One of the Standards of Psychosocial Care for Children with Cancer and their Families recommends that all youth with cancer and their family members have access to psychotherapeutic interventions and support throughout the cancer trajectory. This study was created to identify the psychosocial interventions and services provided to children with cancer and their family members, to ascertain whether there are differences in interventions provided by age of the patient and stage of treatment, and to learn about barriers to psychosocial service provision. An online survey was disseminated to psychosocial providers through the listservs of national and international professional organizations. The majority of the 242 respondents were either psychologists (39.3%) or social workers (26.9%) and 79.7% worked in the United States. The intervention offered most often to pediatric patients, caregivers, and siblings, at every stage of treatment, was psychoeducation (41.7–48.8%). Evidence-based interventions, including cognitive behavioral therapy (56.6%) and mindfulness-based interventions (57.9%) were reported to be frequently used with patients. Interventions designed specifically for the pediatric oncology population were not commonly endorsed. Psychosocial providers reported quality of care would be improved by additional staff, better communication/collaboration with medical team members and increased community-based resources. Future research should focus on improving accessibility to population-specific evidenced-based interventions and translating science to practice. Full article
(This article belongs to the Special Issue Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions)
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12 pages, 1055 KiB  
Article
Getting to Hope: Perspectives from Patients and Caregivers Living with Chronic Childhood Illness
by Emily von Scheven, Bhupinder K. Nahal, Rosa Kelekian, Christina Frenzel, Victoria Vanderpoel and Linda S. Franck
Children 2021, 8(6), 525; https://0-doi-org.brum.beds.ac.uk/10.3390/children8060525 - 19 Jun 2021
Cited by 3 | Viewed by 2717
Abstract
Promoting hope was identified in our prior work as the top priority research question among patients and caregivers with diverse childhood-onset chronic conditions. Here, we aimed to construct a conceptual model to guide future research studies of interventions to improve hope. We conducted [...] Read more.
Promoting hope was identified in our prior work as the top priority research question among patients and caregivers with diverse childhood-onset chronic conditions. Here, we aimed to construct a conceptual model to guide future research studies of interventions to improve hope. We conducted eight monthly virtual focus groups and one virtual workshop with patients, caregivers, and researchers to explore key constructs to inform the model. Discussions were facilitated by Patient Co-Investigators. Participants developed a definition of hope and identified promotors and inhibitors that influence the experience of hope. We utilized qualitative methods to analyze findings and organize the promotors and inhibitors of hope within three strata of the socio-ecologic framework: structural, interpersonal, and intrapersonal. Participants identified three types of interventions to promote hope: resources, navigation, and activities to promote social connection. The hope conceptual model can be used to inform the selection of interventions to assess in future research studies aimed at improving hope and the specification of outcome measures to include in hope research studies. Inclusion of the health care system in the model provides direction for identifying strategies for improving the system and places responsibility on the system to do better to promote hope among young patients with chronic illness and their caregivers. Full article
(This article belongs to the Special Issue Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions)
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19 pages, 532 KiB  
Article
Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses
by Jill M. G. Bally, Meridith Burles, Shelley Spurr, Lorraine Holtslander, Heather Hodgson-Viden, Roona Sinha and Marcelline Zimmer
Children 2021, 8(3), 218; https://0-doi-org.brum.beds.ac.uk/10.3390/children8030218 - 12 Mar 2021
Cited by 4 | Viewed by 2782
Abstract
Background: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children’s care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child’s [...] Read more.
Background: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children’s care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child’s care and support needs. Methods: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit. Fifty-nine participants were randomly assigned to one of two sequence groups, with measures of hope, feelings of control, distress, and uncertainty completed pre- and post-intervention, and at a three-month follow-up. Qualitative interviews sought to assess participant experiences with the intervention, along with acceptability and feasibility. Results: Significant influence on parental distress was found, and the qualitative findings reveal benefits of the intervention for parental wellbeing. The intervention effectively offered practical and emotional support to diverse family caregivers. Conclusions: The evidence-informed KHP intervention can be used by healthcare providers to intervene with family caregivers to support their dynamic emotions including hope, need to live in the moment and remember self, and social preferences. In doing so, parents’ critical caregiving activities can be sustained and their child’s health and wellbeing optimized. Full article
(This article belongs to the Special Issue Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions)
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Review

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21 pages, 433 KiB  
Review
Digital Technologies for Children and Parents Sharing Self-Management in Childhood Chronic or Long-Term Conditions: A Scoping Review
by Jill Edwards, Jenny Waite-Jones, Toni Schwarz and Veronica Swallow
Children 2021, 8(12), 1203; https://0-doi-org.brum.beds.ac.uk/10.3390/children8121203 - 18 Dec 2021
Cited by 6 | Viewed by 3285
Abstract
Worldwide, the prevalence of chronic (or long-term) conditions in children and young people from birth to 18 years (children) is increasing. Promoting competent and effective self-management skills early in the trajectory is important to improve adherence to treatment and optimise quality of [...] Read more.
Worldwide, the prevalence of chronic (or long-term) conditions in children and young people from birth to 18 years (children) is increasing. Promoting competent and effective self-management skills early in the trajectory is important to improve adherence to treatment and optimise quality of life. Successful self-management, therefore, requires parents and children who are developmentally able to develop a range of complex skills, including the use of digital technologies. This scoping review aimed to identify primary research investigating digital technologies for children and parents sharing self-management in childhood chronic illnesses. A comprehensive search of electronic databases was conducted. Nineteen papers were included, assessed for quality and methodological rigour using the Hawker tool and thematically analysed. Three themes were identified: (i) the feasibility and acceptability of using technology, (ii) the usability of technologies and (iii) the effect of technologies on adherence and self-management skills. The results indicate that technologies such as mobile apps and websites can assist the management of long-term conditions, are an acceptable method of delivering information and can promote the development of effective self-management skills by parents and children. However, future technology design must include children and parents in all stages of development. Full article
(This article belongs to the Special Issue Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions)
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22 pages, 484 KiB  
Review
What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice
by Éidín Ní Shé, Fiona E. J. McDonald, Laurel Mimmo, Xiomara Skrabal Ross, Bronwyn Newman, Pandora Patterson and Reema Harrison
Children 2021, 8(12), 1118; https://0-doi-org.brum.beds.ac.uk/10.3390/children8121118 - 02 Dec 2021
Cited by 1 | Viewed by 2705
Abstract
People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify [...] Read more.
People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools. Full article
(This article belongs to the Special Issue Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions)
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24 pages, 870 KiB  
Review
Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families
by Beth Skelton, Kathleen Knafl, Marcia Van Riper, Louise Fleming and Veronica Swallow
Children 2021, 8(7), 558; https://0-doi-org.brum.beds.ac.uk/10.3390/children8070558 - 29 Jun 2021
Cited by 6 | Viewed by 3525
Abstract
Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used [...] Read more.
Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families’ care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families’ recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS. Full article
(This article belongs to the Special Issue Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions)
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11 pages, 336 KiB  
Review
An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne’s Muscular Dystrophy
by Debra Porteous, Barbara Davies, Christine English and Joanne Atkinson
Children 2021, 8(3), 212; https://0-doi-org.brum.beds.ac.uk/10.3390/children8030212 - 11 Mar 2021
Cited by 6 | Viewed by 2784
Abstract
The purpose of this integrative review was to explore psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne’s Muscular Dystrophy (DMD). Electronic databases were searched for research publications between 2010 and 2020. This included Medline, CINAHL, PsycINFO, ERIC, [...] Read more.
The purpose of this integrative review was to explore psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne’s Muscular Dystrophy (DMD). Electronic databases were searched for research publications between 2010 and 2020. This included Medline, CINAHL, PsycINFO, ERIC, ERC, and AMED. Four central themes emerged: Living with DMD; Knowing and telling; Transitioning; and Building resilience. The impact on parents caring for a child with DMD affected all aspects of their lives, changed over time, and had identifiable peak stress points. Unmet parental information and support needs left parents struggling in their role. Transition required changes to parenting behaviors and required adaptation and resilience. It is proposed that future investment should focus on anticipating family need, targeting intervention cognizant of predictable stress points and building resilience through social community. Parents may then be better positioned to support their child in looking forward. Full article
(This article belongs to the Special Issue Psychosocial Interventions for Children and Adolescents with Chronic or Long-Term Health Conditions)
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