Psychological Distress Among Parents of Children With Chronic Health Conditions and Its Association With Unmet Supportive Care Needs and Children's Quality of Life.

OBJECTIVE: To assess parent psychological distress in families of children with common chronic health conditions (CHC) and to explore relationships between parent psychological distress, unmet supportive care needs and children's quality of life (QoL). METHOD: Cross-sectional study involving parents of children diagnosed with a common CHC between 0 and 12 years of age and who had received treatment within the last 5 years. Eligible parents completed an online survey, that included the Depression Anxiety Stress Scale (DASS-21) assessing distress in parents and a 34-item assessment of unmet supportive care needs across 6 domains. Parents completed ratings of their child's current functioning (QoL) using the 23-item PedsQL. Multivariable regression models examined the relative association between unmet needs, children's QoL and parents' depression, anxiety, and stress. RESULTS: The sample consisted of 194 parents of children with congenital heart disease (n=97; 50%), diabetes (n=50; 26%), cancer (n=39; 20%), and asthma (n=8; 4%). A significant proportion of parents had moderate-severe symptoms of depression (26%), anxiety (38%), and stress (40%). Of the PedsQL scales, the poorest outcomes were found for emotional and school functioning. Multivariable analyses showed that both higher unmet needs and poorer child emotional functioning were associated with parent depression, anxiety, and stress symptoms. CONCLUSION: Evidence linking parent distress symptoms to higher unmet needs and poorer child emotional functioning suggests these factors may be targets for interventions to alleviate parent distress. Longitudinal research using larger samples is required to replicate findings, and clarify the magnitude and direction of associations.

Quality of Life in Children With Chronic Health Conditions and Its Contribution to Unmet Supportive Care Needs of Families.

BACKGROUND: While theoretical models have established the bidirectional relationship between health and wellbeing of parents and children with chronic health conditions (CHCs), previous work has predominantly emphasised the impact of parent functioning on child outcomes. This study examines how quality of life (QoL) domains in children with CHCs are associated with unmet supportive care needs (SCN) of their parents and explores whether these associations vary by health condition. METHOD: Parents of children with congenital heart disease (CHD), type 1 diabetes (T1D) and cancer diagnosed before the age of 12 years and receiving treatment within the last 5 years were eligible. Parents recruited through charity organisations and social media platforms completed a secure, online survey via Qualtrics. The PedsQL examined child QoL across four dimensions: physical, emotional, social and school functioning. A 34-item survey assessed parents' unmet SCN in the previous month across six need domains (e.g., care and informational). Linear regressions examined associations between child QoL and unmet SCN domains and moderation analyses determined whether associations varied as a function of CHC. RESULTS: The study included 186 parents (age range 25-56 years) of children diagnosed with various CHCs (52% CHD; 27% T1D, 21% cancer). The child's emotional functioning was inversely related to all unmet SCN domains, social functioning was inversely related to three domains (physical and social; support; financial), school functioning was inversely related to two domains (physical and social; care), and child's physical functioning was not associated with any SCN domains. Only the association between child school functioning and unmet care needs was significantly moderated by CHC type (p < 0.05). CONCLUSION: Poorer emotional functioning in children with a CHC is a key factor in determining parents unmet SCN. Larger studies are required to replicate these findings and inform design of interventions addressing QoL and unmet SCN in families of children with common CHCs.

Unmet supportive care needs of families of children with chronic illness: A systematic review.

BACKGROUND AND AIMS: Unmet supportive care needs (SCN) refer to perceived gaps in the support parents want to manage caregiving activities for children with chronic health conditions (CHC) and the support received. This review aims to systematically identify the unmet SCN of families with children living with five common paediatric CHC and characterise the assessment tools used to measure SCN. DESIGN: Systematic review methodology with narrative synthesis of data. Reporting followed the PRISMA statement guidelines. METHOD: Literature searches were conducted in electronic databases Medline complete, PsycINFO, CINHAL and EMBASE to retrieve relevant articles published between 1990 and July 2022. Eligible studies involved (i) children aged 0-18 years diagnosed with either of cancer, congenital heart disease (CHD), diabetes, asthma, renal disease and (ii) assessment of unmet SCN. Studies involving children with genetic or developmental conditions were excluded. The methodological quality of studies was assessed using JBI assessment tool. RESULTS: Of 6223 articles screened, 34 papers were included (25 quantitative, 5 qualitative and 4 mixed design). Most papers explored unmet needs of families with cancer (n = 26). The remaining articles concerned CHD (n = 5), asthma (n = 2) and mixed CHC (n = 1, renal failure, and diabetes). Information (e.g. treatment, lifestyle, etc.) and health care (e.g. emotional support, practical services, etc.) were the most common unmet need domains across health conditions. A variety of methods and need assessments hampered comparisons between studies both across and within CHC. CONCLUSION: Irrespective of illness, addressing unmet informational or health care needs may help to optimise outcomes and care for children and families living with common CHC. There was considerable variation in reporting styles, study design and need assessments both within and across conditions. RELEVANCE TO CLINICAL PRACTICE: Health care professionals must routinely evaluate the type, quality and quantity of psychoeducation and support that families of children with CHC want and receive. Providing nurses with more effective strategies to assess child and family needs across a broad range of domains may help to increase understanding of where further support for families is required. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution to this study as it involved a systematic review of existing literature.

Telehealth cancer care consultations during the COVID-19 pandemic: a qualitative study of the experiences of Australians affected by cancer.

BACKGROUND: In response to the onset of the COVID-19 pandemic, telehealth was rapidly rolled out in health services across Australia including those delivering cancer care. This study aimed to understand people with cancer and carers' experiences with telehealth for cancer care during the COVID-19 pandemic and associated restrictions. METHOD: Semi-structured interviews conducted with people with cancer and carers via telephone or online video link between December 2020 and May 2021. Participants were recruited through cancer networks and social media. Interviews were transcribed and thematic analysis undertaken. RESULTS: Twenty-three patients and 5 carers were interviewed. Telephone-based appointments were most common. Responses to telehealth were influenced by existing relationships with doctors, treatment/cancer stage and type of appointment. Four themes were derived: (i) benefits, (ii) quality of care concerns, (iii) involving carers, and (iv) optimising use of telehealth. Benefits included efficiency and reduced travel. Quality of care concerns identified subthemes: transactional feel to appointments; difficulties for rapport; suitability for appointment type and adequacy for monitoring. Both patients and carers noted a lack of opportunity for carers to participate in telephone-based appointments. Aligning appointment mode (i.e. telehealth or in person) with appointment purpose and ensuring telehealth was the patient's choice were seen as essential for its ongoing use. DISCUSSION AND CONCLUSIONS: While telehealth has benefits, its potential to reduce the quality of interactions with clinicians made it less attractive for cancer patients. Patient-centred guidelines that ensure patient choice, quality communication, and alignment with appointment purpose may help to increase telehealth's utility for people affected by cancer.

Effectiveness of play therapy in enhancing psychosocial outcomes in children with chronic illness: A systematic review.

PROBLEM: To examine the nature, quality, and effectiveness of Play Therapy (PT) interventions in children with chronic health conditions (CHC) and to identify the measures used to evaluate psychosocial outcomes. ELIGIBILITY CRITERIA: Systematic searches of the databases: Medline complete, PsycINFO, CINHAL, Embase and Sport Discuss were conducted to identify peer reviewed papers reporting original studies published in English between January1990 - April 2020. Studies testing any type of PT or Filial Therapy (FT) with children with CHC aged between 3 and 11 years, or their parents if FT, where outcomes were primarily psychosocial were eligible. SAMPLE AND RESULTS: The title and abstract search identified 6742 papers and six studies (three each for PT and FT) including two randomized control trials were identified as eligible for review. All FT interventions involved group-based training, while only one PT study used a group format. Outcomes for children included emotional and behavioural issues including anxiety, depression, and self-concept and while constructs were broadly comparable across studies, the measures used differed. Sample size ranged between 4 and 58. Two studies suggested positive impact of PT on depression, with one finding improvements in self-concept. Three studies with sample sizes less than 30 found no effect. CONCLUSION: With varied study designs, and small sample sizes, current evidence regarding the effectiveness of PT in improving psychosocial outcomes for children with chronic illnesses is inconclusive. IMPLICATIONS: The field should move from small underpowered studies to randomized trials with comprehensive protocols and larger sample sizes.

Unmet supportive care needs in families of children with chronic health conditions: an Australian cross-sectional study.

BACKGROUND: The aim of this study was to identify similarities and differences in the unmet supportive care needs (USCN) of families of children with major chronic health conditions (CHCs) using a universal need assessment tool. METHODS: A cross-sectional online survey involving parents of children with congenital heart disease (CHD), type 1 diabetes mellitus (T1D), cancer, and asthma diagnosed within the last 5 years recruited via social media and support organizations. Thirty-four items assessing the USCN across six domains (care needs, physical and social needs, informational needs, support needs, financial needs, child-related emotional needs) were responded to on a 4-point Likert scale [no need (1) to high need (4)]. Descriptive statistics identified the level of need, and linear regressions identified factors associated with higher need domain scores. Due to small numbers, the asthma group was excluded from comparisons across CHCs. RESULTS: One hundred and ninety-four parents completed the survey (CHD: n = 97, T1D: n = 50, cancer: n = 39, and asthma: n = 8). Parents of children with cancer were most likely to report at least one USCN (92%), followed by parents of children with T1D (62%). The five most commonly reported USCN across CHCs were drawn from four domains: child-related emotional, support, care, and financial. Three need items were included in the top five needs for all conditions. A higher USCN was associated with a greater frequency of hospital visits and the absence of parental support. CONCLUSIONS: Using a universal need assessment tool, this is one of the first studies to characterize USCN in families of children diagnosed with common CHCs. While proportions endorsing different needs varied across conditions, the most endorsed needs were similar across the illness groups. This suggests that support programs or services could be shared across different CHCs. Video Abstract.

The 50 Most Cited Papers in Craniofacial Anomalies and Craniofacial Surgery.

BACKGROUND: Citation analysis is a recognized scientometric method of classifying cited articles according to the frequency of which they have been referenced. The total number of citations an article receives is considered to reflect it's significance among it's peers. METHODS: Until now, a bibliometric analysis has never been performed in the specialty of craniofacial anomalies and craniofacial surgery. This citation analysis generates an extensive list of the 50 most influential papers in this developing field. Journals specializing in craniofacial surgery, maxillofacial surgery, plastic surgery, neurosurgery, genetics and pediatrics were searched to demonstrate which articles have cultivated the specialty within the past 55 years. RESULTS: The results show an intriguing compilation of papers which outline the fundamental knowledge of craniofacial anomalies and the developments of surgical techniques to manage these patients. CONCLUSIONS: This citation analysis provides a summation of the current most popular trends in craniofacial literature. These esteemed papers aid to direct our decision making today within this specialty.

Current status of temporomandibular joint arthroscopy in the United Kingdom.

In an era during which minimally invasive procedures are increasingly becoming the norm, arthroscopy of the temporomandibular joint (TMJ) seems to be infrequently used for diagnosis and treatment of disorders of the TMJ. The reasons for this are not clear. The purpose of this study was to find out the current state of arthroscopy of the TMJ in the UK and, more specifically, how often it is used, the indications for its use, the level of experience of practising surgeons, and the reasons for not using it. Information was gathered between 2009 and 2010 from a postal and e-mail questionnaire to all oral and maxillofacial consultants in the UK. Of the 346 consultants, 215 (60%) responded to the questionnaire. Forty-two said that they currently used arthroscopy of the TMJ, and 33 of those (81%) have more than 5 years' experience. During the past year, a total of 8 consultants nationally have done 20 arthroscopies or more. Thirty-three of the procedures (81%) were done for both diagnosis and treatment. Lack of perceived need of patients and lack of interest in this specialty were the main reasons given for not doing arthroscopy, lack of training being a key secondary reason. The Storz and Olympus systems were the most commonly used within the UK. Results seem to support the opinion that arthroscopy of the TMJ is under-used, and consideration should be given to ensuring that trainees are instructed in its use, which is important in the diagnosis and treatment of disorders of the TMJ.