Rebuilding life after migration: Research protocol of a mixed methods study on settlement experiences of refugee and migrant youth.

Internationally, there is an urgent need to understand factors promoting successful settlement and integration of people with forced or voluntary migration experiences (i.e., refugee and non-refugee migrants). This paper provides a protocol of a mixed-methods investigation of contextual factors of successful settlement and service utilization of youth and their families, as young people could be at higher risk due to stressors associated with pre-migration trauma, post-migration settlement stressors, and adolescent development. This large-scale mixed-methods study will be conducted across three countries. A questionnaire survey will seek responses from 1200 youth aged 15-24 years residing in South Australia, Ontario, Canada, and California, United States of America. The qualitative component of the study will comprise 54 focus groups (324 participants) with youth and their parents/caregivers. The study design allows a range of important phenomena (e.g., different migration pathways and settlement countries) and key questions (e.g., regarding the intersection of migration, settlement, and wellbeing) to be addressed. It also allows for generalizability of findings to be tested across different communities and countries. Findings will support recommendations for policy and practice and may be generalized to advance research with youth and their families. This study is one of the largest, most comprehensive studies of youth settlement.

The role of midwives in supporting the development of the mother-infant relationship: a scoping review.

BACKGROUND: The mother-infant relationship is complex and dynamic, informing the psychological development of the infant through bonding and attachment. Positive early interactions influence the quality of this relationship. Midwives are well placed to support the developing relationship between the mother and baby, yet there has been limited research exploring the role of the midwife in this context. AIM: To explore interventions that have been provided by the midwife which support the development of the maternal-fetal or mother-infant relationship amongst a low-risk population from pregnancy, and up to six weeks postnatal. The review also sought to understand the types of interventions developed, format and delivery, outcomes measured and if cultural considerations had been incorporated. METHODS: A scoping review of the research literature was undertaken using the Joanna Briggs Institute framework. Five online databases were searched for relevant articles published in English from 2000 to 2021. FINDINGS: Sixteen articles met the inclusion criteria. Three themes emerged: (1) viewing the fetus as separate from the mother, (2) focused activities on the maternal-infant relationship and (3) targeted educational interventions. DISCUSSION: Providing focused activities and targeted education during the pre and postnatal periods support the development of the mother-infant relationship. Significantly, there was insufficient research that considered the influence of culture in supporting the mother-infant relationship. CONCLUSION: Further research is required to develop interventions that include a diverse sample to ensure culturally appropriate activities can be integrated into care during pregnancy and/or the postnatal period provided by midwives.

Socially assistive robots in health and social care: Acceptance and cultural factors. Results from an exploratory international online survey.

AIM: This study explored the views of an international sample of registered nurses and midwives working in health and social care concerning socially assistive robots (SARs), and the relationship between dimensions of culture and rejection of the idea that SARs had benefits in these settings. METHODS: An online survey was used to obtain rankings of (among other topics) the extent to which SARs have benefits for health and social care. It also asked for free text responses regarding any concerns about SARs. RESULTS: Most respondents were overwhelmingly positive about SARs' benefits. A small minority strongly rejected this idea, and qualitative analysis of the objections raised by them revealed three major themes: things might go wrong, depersonalization, and patient-related concerns. However, many participants who were highly accepting of the benefits of SARs expressed similar objections. Cultural dimensions of long-term orientation and uncertainty avoidance feature prominently in technology acceptance research. Therefore, the relationship between the proportion of respondents from each country who felt that SARs had no benefits and each country's ratings on long-term orientation and uncertainty avoidance were also examined. A significant positive correlation was found for long-term orientation, but not for uncertainty avoidance. CONCLUSION: Most respondents were positive about the benefits of SARs, and similar concerns about their use were expressed both by those who strongly accepted the idea that they had benefits and those who did not. Some evidence was found to suggest that cultural factors were related to rejecting the idea that SARs had benefits.

Ecologies of Resilience for Australian High School Students from Refugee Backgrounds: Quantitative Study.

Forced displacement of refugees, currently at record levels, leads to increased cultural diversity in many countries with benefits and challenges for individuals, communities, and societies. Refugees often face significant stressors both pre- and post-migration, and hence are at increased risk of poor mental health and wellbeing. Children and adolescents make up a significant proportion of refugees globally, and hence mental health supports for these young people are crucial. Current mental health research often uses pathologized approaches that focus on trauma, although there is growing literature highlighting the importance of a sense of belonging and the reduction in discrimination and social exclusion, emphasizing strengths and agency of individuals and communities. Resilience is often noted for its positive influence on mental health and wellbeing; however, research regarding how mechanisms of resilience function is still developing. This study investigated mental health and wellbeing of refugee-background Australian youth to better understand the role and function of resilience. Findings suggest that intersecting social ecologies, such as those within family, school, or community networks, contribute to development of identity and a sense of belonging for youth, which together form a resilient system that provides resources for wellbeing. Adaptations of school policy and practice can support positive mental health and wellbeing outcomes by contributing to and developing resilient environments, such as through building connections to family, improving positive recognition of cultural identity for individuals and across the whole school community, and actively working to minimize discrimination.

Refugees at Work: The Preventative Role of Psychosocial Safety Climate against Workplace Harassment, Discrimination and Psychological Distress.

It is widely recognised that employment is vital in assisting young refugees' integration into a new society. Drawing on psychosocial safety climate (PSC) theory, this research investigated the effect of organisational climate on young refugee workers' mental health (psychological distress) through stressful social relational aspects of work (e.g., harassment, discrimination). Drawing on data from 635 young refugees aged between 15 and 26 in South Australia, 116 refugees with paid work were compared with 519 refugee students without work, and a sample of young workers from Australian Workplace Barometer (AWB) data (n = 290). The results indicated that refugees with paid work had significantly lower psychological distress compared with refugees with no paid work, but more distress than other young Australian workers. With respect to workplace harassment and abuse, young refugee workers reported significantly more harassment due to their ongoing interaction and engagement with mainstream Australian workers compared with unemployed refugees. Harassment played a vital role in affecting psychological health in refugees (particularly) and other young workers. While refugee youth experienced harassment at work, overall, their experiences suggest that their younger age upon arrival enabled them to seek and find positive employment outcomes. Although PSC did not differ significantly between the employed groups, we found that it likely negatively influenced psychological distress through the mediating effects of harassment and abuse. Hence, fostering pathways to successful employment and creating safe work based on high PSC and less harassment are strongly recommended to improve refugees' mental health and adaptation.

Using Co-design to Explore How Midwives Can Support the Emerging Mother-Infant Relationship During the Early Postnatal Period: Protocol for a Mixed Methods Study.

BACKGROUND: The postnatal period can be a challenging time for women, with mothers experiencing a range of emotions. As a woman transitions to motherhood, she adjusts to a new sense of self and forms a new relationship with her infant. Becoming a mother is a complex cognitive and social process that is unique for each woman and is influenced and shaped by culture. The emerging mother-infant relationship is a significant factor in maternal well-being and infant development, with the bond between the mother and her baby being critical to the development of secure attachment. It has been recognized that the strength of this relationship is the main predictor of how well a child will do throughout life. There has been a global focus on the importance of the first 1000 days, with Australia identifying this as a national priority. Midwives are ideally placed to support mothers during the development of the mother-infant relationship, providing care through the early postnatal period, which has been identified as a sensitive period for the development of the mother-infant relationship. OBJECTIVE: The aim of this study is to explore how midwives can support the emerging mother-infant relationship in the context of cultural diversity and develop an appropriate co-designed intervention in the early postnatal period. METHODS: This study will use a mixed method approach, specifically the exploratory sequential design (intervention development variant). This study will be undertaken in 3 phases: 1 qualitative phase, which is followed by 2 quantitative phases. Phase 1 will include a scoping review to explore interventions that have influenced the development of the mother-infant relationship, and then, interviews will be undertaken with women exploring their early experiences of motherhood, followed by 3 co-design workshops. The workshops will engage with multilevel stakeholder representatives where, through partnership and participation, they will propose and develop an intervention to support the emerging mother-infant relationship. Phase 2 will develop and pilot 2 purpose-designed evaluation surveys to evaluate the co-designed intervention from the perspective of both mothers and midwives. Phase 3 will implement and evaluate the co-designed intervention using pre- and postmeasures and feedback from the purpose-designed surveys. RESULTS: Phase 1 has commenced and is expected to be completed by August 2021. Phase 2 is expected to be completed by September 2021, with phase 3 commencing in October 2021. The study will be completed by March 2023. CONCLUSIONS: The results of this study will be shared with a variety of audiences and will contribute to the body of knowledge on the mother-infant relationship, potentially improving the understanding of this relationship for women and midwives. This may result in improved strategies for care, with mothers benefiting from enhanced experience and satisfaction during the early postnatal period.

Breaking through the silence in antenatal care: Fetal movement and stillbirth education.

BACKGROUND: Fetal movements are a key indicator of fetal health. Research has established significant correlations between altered fetal activity and stillbirth. However, women are generally unaware of this relationship. Providing pregnant women with information about the importance of fetal movements could improve stillbirth rates. However, there are no consistent fetal movements awareness messages globally for pregnant women. AIMS: This study aimed to explore the antenatal care experiences of Australian mothers who had recently had a live birth to determine their knowledge of fetal movements, the nature and source of that information. METHODS: An online survey method was used for 428 women who had a live birth and received antenatal care in Australia. Women's knowledge of fetal movements, stillbirth risk, and the sources of this knowledge was explored. FINDINGS: A large proportion of participants (84.6%; n=362) stated they had been informed by health care professionals of the importance of fetal movements during pregnancy. Open-ended responses indicate that fetal movements messages are often myth based. Awareness that stillbirth occurs was high (95.2%; n=398), although, 65% (n=272) were unable to identify the current incidence of stillbirth in Australia. CONCLUSION: Women who received antenatal care have high-awareness of fetal movements, but the information they received was inconsistent. Participants knew stillbirth occurred but did not generally indicate they had obtained that knowledge from health care professionals. We recommend a consistent approach to fetal movements messaging throughout pregnancy which focuses on stillbirth prevention.

Voices of the unheard: A qualitative survey exploring bereaved parents experiences of stillbirth stigma.

BACKGROUND: Every year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce. AIM: This study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth. METHODS: An online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries. FINDINGS: Based on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan's stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered. CONCLUSION: Bereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women.

Understanding stillbirth stigma: A scoping literature review.

BACKGROUND: The World Health Organization, and the 2011 and 2016 Lancet Stillbirth series as well as medical and scientific literature, have all called for stillbirth stigma to be reduced. However, few studies have explored or attempted to conceptualise the meaning of stigma in the context of stillbirth. AIM: To explore the current knowledge surrounding stillbirth stigma, specifically the extent, type and experiences of bereaved parents. METHODS: A five-stage scoping review framework was utilised. A search of relevant databases (MedLine, EMBASE, PsychInfo, PsychArticles, and Ovid Emcare) was undertaken with several key words related to 'stillbirth' and 'stigma.' The reference lists of included studies were also searched. FINDINGS: A total of 23 resources met the inclusion criteria for this review. A thematic analysis regarding how stigma was conceptualised and/or experienced within results and/or discussion was employed on these studies. Five over-arching themes, with several sub-themes, were discovered: Type of stigma, identity, silence, bereaved mothers' experiences of stigma in low-income countries and transformation. DISCUSSION: Stillbirth stigma remains an under-researched topic. Few articles conceptualised the experiences of the bereaved parent within a stigma framework. However, examples of bereaved parents enduring stigma were found within the literature. Common stigmatising experiences included, bereaved parents' identities being challenged; and feelings of shame, guilt, and blame after their stillbirth. Stigmatising experiences could be different based on the bereaved parent's cultural background. CONCLUSION: Further research which attempts to conceptualise stillbirth stigma and explores those experiences from a bereaved parent perspective is needed to help inform stigma reduction strategies.

The Role of Schools in Identifying and Referring Refugee Background Young People Who Are Experiencing Mental Health Issues.

BACKGROUND: Refugee background young people are at increased risk of mental health problems. In countries of refugee resettlement, schools are important sites where mental health difficulties can be identified and service access facilitated; however, little is known about how best to support these practices within schools. METHODS: This article explores school and mental health service providers' perspectives on mental health challenges and referral pathways for refugee youth in South Australia. It draws on semi-structured in-depth interviews with 17 secondary school staff and 10 mental health service providers, which were analyzed thematically. RESULTS: Key challenges for school staff in identifying mental health issues were understanding behaviors, overcoming stigma, cultural and linguistic barriers, engaging with parents, staff preparation and training, and embeddedness within Western understandings of mental health. There was also limited awareness of appropriate mental health services and referral pathways. Service providers recognized schools' key role in identifying mental health issues for refugee students. CONCLUSIONS: Enhanced training and support is required for teachers to identify and refer students who might be experiencing mental health issues. "On-site" school services, bi-cultural workers, and increased knowledge of existing within-school supports and referral pathways to external services would enhance outcomes for refugee students.

Refugee Youth and Transition to Further Education, Training, and Employment in Australia: Protocol for a Mixed Methods Study.

BACKGROUND: Young people with refugee experiences are widely acknowledged as encountering multiple disadvantages that affect their school completion and retention, university entry, and subsequent employment. This paper discusses the rationale for and protocol of a mixed methods investigation focusing on improving education and employment outcomes among refugee background youth aged 15 to 24 years from three focus regions: the Middle East (Afghanistan, Iran, Iraq, Syria), South Asia (Nepal, Bhutan, Myanmar/Burma, Pakistan) and Africa (Sudan, South Sudan, Liberia, Ethiopia, Somalia, DR Congo). OBJECTIVE: The rationale of the project is to identify the facilitators and barriers to successful transition from school to further education and employment; investigate participant awareness of support systems available when faced with education and employment difficulties; redress the disadvantages encountered by refugee background youth; and bridge the gap between research, policy, and practice in relation to social inclusion and participation. METHODS: The study involves collecting survey data from 600 youth followed by individual interviews with a subset of 60 youth, their parents/primary caregivers, and their teachers. A cross-sectional survey will assess facilitators and barriers to successful transition from school to further education and employment. Individual interviews will provide context-rich data on key issues relevant to education and employment outcomes. RESULTS: The study began in 2016 and is due for completion by the end of 2019. The quantitative survey has been conducted with 635 participants and was closed in March 2019. The qualitative interview stage is ongoing, and the current total in April 2019 is 93 participants including educators, youth, and family members of the youth. Analysis and presentation of results will be available in 2020. Some preliminary findings will be available during the late half of 2019. CONCLUSIONS: This project will contribute new and unique insights to knowledge in relation to key factors influencing education and employment outcomes among refugee youth. This research will enable effective planning for the needs of some of Australia's most disadvantaged and marginalized young people, leading to a sustainable improvement in the education and employability of young refugees. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/12632.

Should psychosocial safety climate theory be extended to include climate strength?

Psychosocial safety climate (PSC; climate for psychological health) is an organizational antecedent to work conditions articulated in the job demands-resources model. We responded to calls for broader consideration of organizational climate in terms of both climate level and strength. We tested PSC level and strength as main and interactive predictors of work conditions, psychological health, and engagement. Using multilevel analysis and cross-sectional data, the effects of unit-level PSC constructs were investigated in 21 hospital work units (n = 249 employees) in Australia. The correlation between PSC levels (measured at the unit mean) and PSC strength (measured as unit -1 × SD) was moderate and positive, suggesting that ceiling effects of PSC scores were not problematic. PSC level was a better predictor than PSC strength or their interactions for job demands (psychological and emotional demands), job resources (e.g., skill discretion and organizational support), and health (emotional exhaustion). For engagement, the interaction was significant-improving engagement, therefore, benefits from high levels of PSC and PSC strength within the work units. So, in answer to the research question regarding PSC theory extension, "it depends on the outcome." Research limitations are acknowledged, and the potential of the PSC model to guide the reduction of workplace psychosocial risk factors and the negative consequences is discussed. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Recruiting Dementia Caregivers Into Clinical Trials: Lessons Learnt From the Australian TRANSCENDENT Trial.

The burden on those caring for a person with dementia is substantial. Although quality research assists in addressing the needs of these caregivers, recruiting caregivers into clinical studies is often problematic. This investigation explores the difficulties and successes in recruiting dementia caregivers into community-based clinical research by reporting the findings of a mixed-method substudy of a multicenter randomized controlled trial involving 40 community-dwelling dementia caregivers living in Adelaide, South Australia. Data for the substudy were derived from standardized trial monitoring documentation and structured telephone interviews. From a total of 16 distinct methods used across a 12-month recruitment campaign, the most cost-effective strategy was the distribution of flyers through a single study site. This approach generated the greatest number of enrollments of all methods used, achieving a 67% recruitment yield. The least cost-effective strategy, with a 0% recruitment yield, was the publication of a newspaper advertisement. Themes that emerged from the interviews pointed toward 5 key facilitators and 3 barriers to future trial recruitment. This study has generated new insights into the effective recruitment of dementia caregivers into clinical trials. We anticipate that these lessons learnt will assist in shaping the recruitment strategies of future studies of dementia caregivers.

Transcendental Meditation for the improvement of health and wellbeing in community-dwelling dementia caregivers [TRANSCENDENT]: a randomised wait-list controlled trial.

BACKGROUND: Dementia is a prevalent neurodegenerative disorder affecting an estimated 24.3 million people across the globe. The burden on those caring for people with dementia is substantial, with widespread implications for the caregiver, the care recipient and the community. Relaxation techniques, such as Transcendental Meditation® (TM), have been shown to reduce stress and anxiety in healthy workers; similar benefits are anticipated in dementia caregivers. The objective of this study was to ascertain whether TM can improve psychological stress, quality of life, affect and cognitive performance in dementia caregivers. METHODS: The study was conducted as a pilot prospective, multi-centre, community-based, randomised wait-list controlled trial. Community-dwelling caregivers of persons with diagnosed dementia were randomly assigned to a 12-week (14-hour) TM training program or wait-list control. Participants were assessed for quality of life, stress, affect, cognitive performance and adverse effects. The feasibility of the study was also evaluated. RESULTS: Seventeen caregivers were recruited and randomised. Improvements in WebNeuro response speed scores over time were significantly (p = 0.03) greater in the TM group relative to control. Changes between groups over time in all other primary and secondary outcome measures did not reach statistical significance. However, there was a trend toward greater improvement in WebNeuro stress, depression and negativity bias scores in the TM group. Adverse events were reported amongst 63 % of TM-treated subjects; however, events were generally transient, of mild-moderate intensity and only 'possibly' related to TM. CONCLUSIONS: Dementia caregivers exposed to TM demonstrated varying degrees of improvement in several measures of cognitive function, mood, quality of life and stress following exposure to TM. However, as the pilot study was underpowered, no firm conclusions can be made about the effectiveness of TM in this caregiver population. Findings from full-scale trials are now warranted. TRIAL REGISTRATION: Australian New Zealand Clinical Trial Registry ACTRN12613000184774 (Registered 15th February 2013).

Improving the health and well-being of community-dwelling caregivers of dementia sufferers: study protocol of a randomized controlled trial of structured meditation training.

BACKGROUND: Caring for a person with dementia can be an unrelenting and burdensome task, one that is often detrimental to the caregiver's health, well-being, and functionality. The enduring stress and frustration of the caregiver role can also contribute to poorer outcomes for dementia sufferers. Building on growing clinical interest in the capacity for Transcendental Meditation(®) (TM; a relaxation technique) to reduce stress and anxiety in healthy workers, this study examines whether similar improvements could be experienced by dementia caregivers. OBJECTIVE: The study objective was to ascertain whether a TM program can improve psychological stress, quality of life, affect, and cognitive performance of dementia caregivers. DESIGN: The study was a pilot prospective, single-center, randomized wait-list controlled trial with two parallel arms. SETTING/SUBJECTS: Community-dwelling carers of persons with diagnosed dementia, residing in metropolitan Adelaide, South Australia, were included in this study. INTERVENTIONS: Participants will be randomly assigned to a 13-hour TM training program or wait-list control over 12 weeks. OUTCOMES: Primary outcomes include quality of life and stress. Secondary outcomes include affect, cognitive performance, cost-effectiveness, and study feasibility. Outcomes will be assessed at baseline, week 12 (postintervention), and week 24 (follow-up). RESULTS: Results are expected to be available early in 2014. CONCLUSIONS: This project responds to a need for robust evidence of the clinical and economic effectiveness of TM for the management of caregiver stress. If Transcendental Meditation is shown to be effective, it could indicate a simple, cost-effective, and easily implemented strategy to assist many of the growing numbers of caregivers to cope with the demanding and often difficult caregiver role.

Depressive symptomatology and service utilisation among refugee children and adolescents living in South Australia.

BACKGROUND: Young refugees resettled in Western countries are at increased risk of mental health problems. However, most research has centred on post traumatic stress disorder (PTSD), with depression, other mental health disorders, and problems receiving comparatively less attention. METHOD: Depressive symptomatology was assessed using the Children's Depression Inventory (CDI) in a multiethnic community sample of 348 refugee children (n = 180) and adolescents (n = 168) aged 7-17 years living in South Australia. RESULTS: According to parent reports, 7.1% of children and adolescents had depressive symptomatology for which services were available and yet only 21.5% of these accessed services. CONCLUSIONS: Young refugees need improved access to culturally appropriate mental health care.

Experiences of Chinese immigrants and Anglo-Australians ageing in Australia: a cross-cultural perspective on successful ageing.

This study explored the life experiences and views on successful ageing of older Australians. Semi-structured interviews were conducted with 21 participants consisting of 10 Chinese-Australians and 11 Anglo-Australians, aged 55 to 78 years. Data were analysed using Interpretative Phenomenological Analysis. Results revealed that both groups associated successful ageing with health and personal responsibility. Anglo-Australians regarded growing old gracefully and acceptance as important aspects of successful ageing, whereas Chinese-Australians valued financial security and an active lifestyle. The research highlights that a cross-cultural perspective is imperative for service delivery and policy development to promote the health and well-being of older Australians.

Help-seeking for mental health problems in young refugees: a review of the literature with implications for policy, practice, and research.

The large and diverse bodies of literature on refugee child and adolescent mental health have not been matched by a commensurate interest in help-seeking. Most help-seeking research has centred on Western and, to a lesser extent, non-refugee ethnic minority adult populations. An emerging child and adolescent help-seeking literature consistently reports widespread underutilization of mental health services by children in the general population. Current research and opinion suggest a similar trend for refugee and other ethnic minority children. While service underutilization appears to be an issue for all children, those from refugee backgrounds may be at increased risk of mental health problems and have greater difficulty accessing mental health care. From a policy and practice perspective, the most important explanation for low uptake of services by refugee families concerns an overall failure of Western mental health systems to accommodate the needs of ethnically diverse populations in general and refugees in particular. In order to effectively plan for the mental health needs of refugee children and adolescents, Western host country governments need a clear understanding of help-seeking behaviour.

Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma.

AIM: To identify the time required by children with cystic fibrosis (CF), diabetes or asthma to complete daily treatment tasks and the hassle they experienced when completing these tasks. To compare parent and child reports of daily treatment time and hassle. To investigate the relationship between treatment time and hassle, and (i) children's health-related quality of life (HRQL); and (ii) disease severity. METHODS: 160 children aged 10-16 years with CF, type 1 diabetes, or asthma were followed over a 2-year period. Information about children's treatment time and hassle, and their HRQL was obtained from parents and children at baseline, 1-year and 2-year follow-up assessments. RESULTS: On average, children with CF reported spending 74.6 +/- 57.0 min completing treatment tasks, children with diabetes spent 56.9 +/- 27.8 min and children with asthma spent 6.4 +/- 9.3 min. Parents reported that children spent less time that was reported by their children. Over the two years, parent and child reports describing treatment time for children with CF did not vary significantly (P = 0.3). Treatment time for children with diabetes increased (P = 0.02) whereas that for children with asthma reduced (P = 0.001). The level of hassle experienced by children when completing individual treatment tasks was low for all three conditions. There was no significant relationship between treatment time and children's HRQL. CONCLUSION: Children with CF or diabetes spent a substantial amount of time each day completing the treatment tasks. Although this was not related to HRQL, it could impact the ability to comply with complex and all home-based-therapies for some children.

Health-related quality of life of children and adolescents with chronic illness--a two year prospective study.

The aim of this study was to compare the self-reported health-related quality of life (HRQL) of children and adolescents with diabetes, asthma or cystic fibrosis (CF) with the HRQL of a large community sample, to assess the extent to which the HRQL of the children and adolescents with chronic illness changes over time, and to examine the consistency of changes in different HRQL domains. One hundred and twenty three young people aged 10-16 years with asthma, diabetes, or CF were recruited from specialist paediatric clinics. Children rated their HRQL using the Child Health Questionnaire (CHQ) and three disease-specific measures at baseline, 6, 12, 18 and 24 months post-baseline. In several areas, the HRQL of children with chronic illness was significantly worse than that of children in the community sample. Over the 2 years of the study, although children with asthma and diabetes did not report significant changes in CHQ scores rating their physical health, they reported significant improvements in scores rating the extent to which health problems interfered with physical and family activities. CHQ scores describing their physical health reported by children with CF declined significantly but there was no significant change in scores rating interference with physical and family activities.