Perceptions of the support that mothers and fathers of children with cochlear implants receive in South Australia: A qualitative study.

OBJECTIVE: The study explored the perceptions of parents of children with cochlear implants regarding the support they have received. DESIGN: Semi-structured interviews were conducted and the resultant data was subjected to thematic analysis. STUDY SAMPLE: Participants were 12 mothers and four fathers from South Australia with a child with cochlear implants. RESULTS: Three major themes emerged: (1) a journey into a new world for parents, (2) services meet many but not all needs, and (3) parent connections and relationships. Most parents were satisfied with surgical, audiology, and early intervention services as well as specialist hearing-impairment schools, and perceived this support as helpful and adequate. However, some parents were critical of non-specialized teaching staff, and technical support for hearing devices. Parent recommendations for improved service provision included increased support, improved information, and additional professional services. CONCLUSIONS: Parent contributions suggest a need for service providers to develop support that is not only child-need oriented, but parent-need oriented, to better address service gaps. With a deeper understanding of parents' experiences and needs, service providers will have a greater capacity to develop a broader model of service that enhances parental engagement and coping.

Survivors of childhood cancer in South Australia attending a late-effects clinic: a descriptive report of psychological, cognitive, and academic late-effects.

This study provides a description of psychological late effects among a heterogeneous cohort of pediatric cancer survivors (N = 70) attending the South Australian Late-effects Clinic. Survivors reported more problems on the Strengths and Difficulties Questionnaire and the Child Behavior Checklist compared to normative data but no differences in Sluggish Cognitive Tempo scores. Forty-six percent of the sample reported school difficulties, and 12% of the sample age older than 15 reported smoking. Late-effects clinics should continue to monitor psychological well-being and health behaviors. Further research is recommended to determine whether sluggish cognitive tempo is a useful concept for the assessment of survivors.

Training and Educational Pathways for Clinicians (Post-graduation) for the Assessment and Diagnosis of Autism Spectrum Disorders: A Scoping Review.

This review aimed to identify the post-graduation training pathways available for both clinicians and trainers in the assessment and diagnosis of Autism Spectrum Disorder (ASD). The study was guided by two research questions: What is known about ASD-specific educational, training, or other pathways available to support clinicians of any discipline, post-graduation, to meet the required expertise relevant to assessments of ASD concerns? What is known about the educational pathways available to clinicians seeking to provide training to other clinicians, post-graduation, in the assessment of ASD concerns? A scoping review was undertaken with searches completed across five databases (PubMed, PsycINFO, PsycEXTRA, ERIC and CINAHL). A Google search strategy was also executed using the "advanced" search function. Eligible records were literature, written in English, that examined post-graduation training and/ or education of clinicians to assess and/ or diagnose ASD. Fourteen relevant records were identified. Post-graduate training has the potential to enhance clinician confidence and service provision in ASD assessment and diagnosis. System-wide training approaches show promise in building large-scale, diagnostic capacity and the use of tele-mentoring offers a cost-effective, convenient mode of training delivery. A lack of evidence to support ASD diagnostic training pathways was found and may pose a challenge for clinicians and service users. The limited evidence found suggests that high quality research will be fundamental in determining how to build clinician capacity in ASD assessment and diagnosis and to ascertain whether training pathways are a necessary component.

Supporting bereaved parents: a phenomenological study of a telephone intervention programme in a paediatric oncology unit.

AIMS AND OBJECTIVES: This study sought to discover bereaved parents' perspectives and experiences of a nurse-led, ward-based, telephone support programme in a children's oncology unit. BACKGROUND: Parental grief is especially intense and long-lasting, and many parents can experience serious psychological problems. The oncology team learned that some parents felt 'forgotten' or 'abandoned' following their child's death and addressed this concern by initiating and subsequently evaluating a telephone bereavement support programme. DESIGN: An interpretive phenomenological investigation of the experiences of six parents who participated in the programme. METHODS: Parents shared their experiences and perceptions of the programme in individual interviews. Interpretive phenomenology and thematic analysis guided the interviews' interpretation to ascertain both the parents' experiences of the programme and their understandings of everyday clinical terms such as 'support' or 'reassurance'. RESULTS: Parents found the programme supportive, especially valuing ongoing contact with a nurse who 'knew them'. Telephone contact was preferred to visiting the hospital, which brought back painful memories. Calls were important elements in helping parents create meaning and memory around their deceased child. CONCLUSIONS: Regular telephone contact over an agreed period from a familiar member of the child's treating team can create a more positive and supportive bereavement experience for parents in the year following their child's death. The specific findings are discussed in the context of the death of a child as a crisis of meaning. RELEVANCE TO CLINICAL PRACTICE: Clinical nurses are ideally placed to use existing close relationships to extend care and support to bereaved parents. This study shows how nurses can identify service gaps, work with interdisciplinary team colleagues to initiate appropriate actions and participate in the essential evaluation subsequently required.

Assessment and treatment of mental health conditions in children and adolescents: A systematic scoping review of how virtual reality environments have been used.

BACKGROUND: There is growing interest in the use of virtual reality environments (VREs) in psychological treatment and assessment. Most research has focused on the application of VREs in adult psychological disorders with fewer studies focusing on its applicability with children and adolescents. A systematic scoping review was undertaken of research assessing how VREs have been used in the treatment and assessment of childhood mental health disorders to provide an overview of the current state of the literature and identify future research directions. METHOD: Systematic searches of online databases were conducted in PsycInfo, PubMed, Embase, Scopus, and Web of Science. RESULTS: Eleven studies met eligibility criteria and were included in this review, with the majority focusing on VRE interventions for anxiety-related disorders. There is also emerging support for VRE deep breathing training for anxiety, VRE assisted treatment of internet gaming disorder and anorexia nervosa, and VRE assessment of body image evaluation in anorexia nervosa. Most studies were pilot and feasibility studies with only three randomised-controlled trials (RCT). CONCLUSIONS: The current literature shows some promise for the use of VRE assessments and interventions of childhood mental health problems, particularly for anxiety-related disorders such as social anxiety and specific phobias. However, high-quality RCTs are now needed to establish effectiveness of VREs in this population, and how it compares to existing evidence-based approaches, given its promise to improve both engagement and outcomes.

Validation of the Psychosocial Assessment Tool 2.0 for paediatric burn patients.

OBJECTIVE: The Psychosocial Assessment Tool 2.0 (PAT-B) is an adaptation of an existing screening tool with the aim of the present study to examine its effectiveness and suitability to identify children and families at risk of emotional, behavioral, and social maladjustment following paediatric burns. METHODS: Sixty-eight children aged between 6 months - 16 years (M = 4.40) admitted into hospital following paediatric burns, and their primary caregivers, were recruited. The PAT-B comprises several dimensions including family structure and resources, social support, as well as caregiver and child psychological difficulties. Caregivers completed the PAT-B and several standardized measures for validation purposes (e.g., caregiver reports of family functioning, child emotional and behavioural problems, caregiver distress). Children old enough to complete measures reported on their psychological functioning (e.g., posttraumatic stress and depression). Measures were completed within 3 weeks of child admission and then again at 3 months after burn. RESULTS: The PAT-B demonstrated good construct validity, evidenced by moderate to strong correlations between the PAT-B Total and subscale scores and several criteria measures (family functioning, child behaviour and caregiver distress, child depressive symptoms, rs ranging from 0.33 -0.74). Preliminary support for criterion validity of the measure was observed when examined against the three tiers of the Paediatric Psychosocial Preventative Health Model. The proportion of families falling within these tiers of risk (Universal [low risk], 58.2%; Targeted, 31.3%; or Clinical range, 10.4%) was consistent with prior research. Sensitivity of the PAT-B to identify children and caregivers at high risk of psychological distress was 71% and 83%, respectively. CONCLUSION: The PAT-B appears to be a reliable and valid instrument for indexing psychosocial risk across families who have sustained a paediatric burn. However, further testing and replication using a larger sample size is recommended before the tool is integrated into routine clinical care.

Maintaining Schooling for Children With Cancer During and Post Treatment: Parents' Perspectives of a Theory-Based Program.

This study explored parents' perceptions of a hospital-based schooling intervention for children with cancer. A qualitative design using semi-structured interviews was employed. Participants were nine parents whose children had participated in the program. Parents participated in semi-structured interviews, which were transcribed verbatim and analysed thematically. Five major themes were identified: experiences with program components, the bigger picture of the program, communication, a burden of responsibility for parents, and perceived impacts of cancer on schooling. Results showed that the parents valued the focus upon schooling and viewed several aspects as being beneficial. Challenges for parents included a lack of communication and individualized planning, and a burden of responsibility. Findings suggest that schooling is important to families and should be a fundamental psychosocial consideration of service providers. The schooling-related needs of parents should also be addressed.

Relationships Between Childhood Experiences and Adulthood Outcomes in Women with PKU: A Qualitative Analysis.

BACKGROUND: The enduring impact of the childhood experiences of people with phenylketonuria (PKU) on their adulthood outcomes is equivocal. As the effect of childhood experiences on adulthood is well documented amongst the general population, the aim of this study was to explore childhood experiences considered significant by women with PKU as they relate to adult experiences and management of PKU, and psychological wellbeing. METHOD: Eight women with PKU in South Australia underwent semi-structured interviews. The audio-recorded interviews were transcribed verbatim and analyzed using thematic analysis. RESULTS: Interviews revealed that feeling different to peers as a child, challenges with management of the condition during adolescence, parental and extended family support, and the perception of PKU as a burden during childhood were associated with adulthood experiences. CONCLUSIONS: Thus, it is proposed that these childhood factors have a combined, long-term impact. These findings have significant clinical implications, suggesting that early psychosocial intervention relating to these identified childhood experiences has the potential to enhance positive outcomes for adults with PKU.

Promoting psychological well-being in women with phenylketonuria: Pregnancy-related stresses, coping strategies and supports.

OBJECTIVE: To explore the pregnancy-related stresses anticipated and experienced by women with phenylketonuria (PKU) and the coping strategies and supports utilised or anticipated to be beneficial during pregnancy. METHODS: Thematic analysis of interview data from eight women with PKU in a cross-sectional, qualitative study. Five of the participants had never had a pregnancy but were planning to in the future, two participants had children, and one participant was pregnant. RESULTS: The central concern regarding pregnancy was achieving and maintaining the essential low Phe levels, in the context of the devastating effects of high levels. The Transactional Model of Stress and Coping was utilised to understand the coping strategies and supports utilised or anticipated to be beneficial during pregnancy. Similarities and differences between the women who had experienced pregnancy, and those who were planning a pregnancy in the future were evident in key coping strategies, with knowledge seeking, positive reappraisal, and reassurance seeking reported. Support from health professionals and other mothers with PKU was key for all women. Psychological support was identified as a resource perceived to be beneficial to promote psychological well-being during pregnancy but not yet provided. CONCLUSION: Pregnancy is associated with significant stresses for women with PKU. Clinical implications of the findings include provision of psychological support.

Interactive programme to enhance protective factors for eating disorders in girls with type 1 diabetes.

AIMS: This study evaluated the effectiveness of a pilot programme in enhancing protective factors for eating disorders in young girls with type 1 diabetes (T1D). METHODS: Twenty girls with T1D (M age = 11.06 years) attended two 4-h group sessions. A 4-week baseline control period was compared against changes at post-programme and at 1-month follow-up on measures of eating disorder risk factors and indicators of glycaemic control. RESULTS: At post-intervention, significant improvements were found for self-efficacy related to diabetes management, self-esteem, body-esteem,thin-ideal internalization and perfectionism. These gains were maintained at 1-month follow-up. Participants were also rated by their parents as assuming more responsibility for specific diabetes-related tasks at follow-up. CONCLUSIONS: A brief interactive programme can favourably impact protective factors for disordered eating. The development of effective disordered eating prevention strategies for girls with T1D is an urgent priority and the current study is a first step in this direction.

Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study.

This qualitative study aimed to gain an in-depth understanding of the adaptation of children and families to childhood chronic illness. Considering ecological theories and child empowerment, we departed from the usual practice of relying solely on parental report by also soliciting children's views. Eighteen children aged 7-14 with cancer, chronic renal failure or type 1 diabetes, and 21 of their parents, participated. The inclusion of several conditions enabled the examination of data from a categorical versus non-categorical perspective. Focus groups supplemented by individual interviews explored participants' views about challenges and the processes they considered important in enhancing adaptation to a chronic illness. Children, as well as parents, provided rich material. Thematic analysis revealed 11 main themes. Six concerned the impact of the illness on various aspects of life. The other main themes were the meaning of disease, stress-processing, social support, future concerns and psychosocial interventions. There were many similarities and some differences between parent and child reports. Many issues were common across illness groups, consistent with a non-categorical approach, though there were some illness-specific issues, especially for those with cancer. Positive as well as negative material emerged. Implications for clinical services are discussed.