"A Really Really Almost Impossible Journey" Perceived Needs and Challenges of Families Impacted by Pediatric Cancer: A Qualitative Analysis.

Caring for a child with cancer can place a number of burdens on families, however it is unclear the extent to which health-care professionals (HCPs) and other personnel supporting families are aware of these burdens. This study sought to explore the needs and challenges encountered by families impacted by pediatric cancer in Ireland from the perspectives of both parents and the personnel who support them. Twenty-one participants, comprising seven parents (one male, six females), and 14 supportive personnel (nine hospital-based volunteers and five HCPs) took part in in-depth semi-structured interviews via Microsoft Teams (December 2020 to April 2021) to obtain a perspective of the needs, challenges, and currently available support for families. A reflexive thematic approach to analysis was employed. The need to navigate a new normal, a sense of riding the wave and reliance on others were perceived to be the primary challenges encountered by families. Participants reported a need for community service provision, connectivity across the health-care system and more accessible psychological support. High levels of overlap across themes were found for parents and supportive personnel, particularly HCPs. Results highlight the significant challenges encountered by families impacted by pediatric cancer. Themes voiced by parents were frequently echoed by HCPs, suggesting this group is attuned to broader family needs. As such, they may be capable of providing insight where parent perspectives are unavailable. While further analysis including children's voices is needed, findings highlight key areas toward which support for families should be directed.

Caregivers of children feel confident about using the Internet for health information.

BACKGROUND: Caregivers of children may rely on internet sources, health care providers, peers or family for health information. OBJECTIVE: To examine the impact of sociodemographic factors on the use of the internet for health information by caregivers of children, and the impact on self-efficacy, effort and frustration. METHODS: Using data from the 2019 Health Information National Trends Survey, the effects of information source on self-efficacy, effort and frustration was examined using the complex samples module of SPSS. RESULTS: The internet was the most common source of health information for caregivers of children (n = 247), with high confidence, low frustration and effort reported. Younger, higher educated and higher income caregivers were significantly more likely to use the internet for health information. Information from Health Care Providers (HCPs) was associated with greater confidence, and information from peers associated with lesser effort and frustration. No significant effects on self-efficacy, effort or frustration for online health information was noted compared to other sources. CONCLUSIONS: Efforts to reduce barriers to online health information may be required for some groups of caregivers, and health care providers may have a role to play in this.

Perceived impacts of a therapeutic recreation based hospital outreach programme (HOP) for children with chronic or severe illness: Qualitative analysis.

BACKGROUND: While Therapeutic Recreation (TR) camp programmes have been extensively analysed, less is known about hospital outreach programmes (HOPs). This study examined parent, volunteer and health care provider (HCP) perceived core features and outcomes of a hospital-based TR programme for children with serious illness. METHODS: Participants were either 1) a HCP within a hospital setting, 2) a volunteer with HOP, or 3) the parent of a child with serious illness. Semi-structured interviews were completed remotely and analysed using a reflexive thematic approach. RESULTS: Nineteen participants (5 parents, 5 HCPs, 9 volunteers) were interviewed. Core features of the HOP included the importance of playas an anchor to the present moment and as a vehicle to challenge and grow, creation of a safe space allowing child and family needs to be met, and meeting families where they are. Perceived outcomes of attending the HOP included changing the focus from being sick to being a child, and developing a sense of solidarity amongst peers for both children and parents. CONCLUSIONS: These results highlight the important contribution of the HOP in supporting children regain a sense of self that is greater than illness, allowing them to reconnect with their values and express themselves, while supporting growth and self-esteem.

Utility, barriers and facilitators to the use of connected health to support families impacted by paediatric cancer: a qualitative analysis.

AIM: As healthcare systems are increasingly burdened, the efficiencies and cost savings offered by connected health (CH, i.e. two-way communicative healthcare technologies such as eHealth or mHealth) present an attractive solution for supporting families impacted by cancer. More research is required, however, to examine attitudes towards CH to better facilitate its use in practice. This study seeks to examine the utility, barriers and facilitators of CH use for families affected by paediatric cancer living in Ireland. METHODS: Healthcare professionals (n = 5) and parents of children with cancer (n = 7) completed semi-structured interviews on their experiences of and attitudes to CH via Microsoft Teams. A reflexive thematic approach to analysis was employed. RESULTS: CH was perceived to provide support for a number of current needs with themes of 'shifting responsibilities', 'individualisation of care' and 'knowledge as power'. Through facilitating communication, information sharing and monitoring of child health, CH was perceived to support decreased parental burden and increased parental control, with positive child outcomes thought likely. Perceived barriers and facilitators to the use of CH included the 'importance of trust', 'pace of change' and 'access'. CONCLUSION: While results suggest an acceptance of CH across key stakeholders, barriers and facilitators should be considered to support effective implementation. While further analysis of the efficacy of CH to support families impacted by paediatric cancer is needed, these findings highlight key areas where CH may be effectively employed.

The role of Connected Health technologies in supporting families affected by paediatric cancer: A systematic review.

OBJECTIVES: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer. METHODS: Using search terms relating to: (1) paediatric cancer, (2) family/caregivers and (3) CH, the databases of PsycINFO, Pubmed, EMBASE and Web of Science were searched. Inclusion criteria included an evaluation of CH technologies for supportive care for families/caregivers affected by paediatric cancer at any stage of treatment or survivorship. RESULTS: Sixteen studies met inclusion criteria. CH was primarily web-based (n = 6), however smartphone applications (n = 5), telehealth (n = 2) and online groups (n = 3) were utilised. Intervention areas included psycho-social (n = 6), health and information provision (n = 8) and palliative care (n = 2). CONCLUSIONS: While limited studies have evaluated the impact of CH on families living with paediatric cancer, emerging evidence suggests potential benefits. More evidenced-based interventions are required.

Parent-Implemented Bedtime Fading and Positive Routines for Children with Autism Spectrum Disorders.

Sleep disorders affect a large portion of those with autism spectrum disorder. Behavioural interventions have been found to increase appropriate sleep behaviours. This study sought to examine the efficacy of two stimulus control interventions (bedtime fading and positive routines) on total sleep duration, sleep onset latency and frequency and duration of night wakings for children with autism using two multiple baseline designs. Secondary dependent variables, namely, educational opportunities, challenging behaviours, parent acceptance and social validity were also analysed. Results suggest some efficacy for both interventions. Increased total sleep duration and decreased sleep onset latency were achieved with bedtime fading. Positive routines showed mixed results with decreased sleep onset latency and increased total sleep duration for two of three participants.