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Caring for a sick/disabled child

The following resources examine particular issues and challenges for family members caring for children under 18 with a long-term condition, including physical disability, mental health and learning disability.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

Training and support for caring for a child's gastrostomy: A survey with family carers

Objective: The aim of this study was to explore family carers' experiences of training and ongoing support for caring for their child's gastrostomy, and to get their views on how this could be improved. Methods: A mixed-methods online survey with 146 family carers (eg, parents, grandparents) who care for a child with a gastrostomy. Family carers rated their own experience of training and support and made recommendations for how training and support could be improved for future families. Results: The nature and extent of the training family carers reported receiving varied considerably. Many felt that the demonstrations they received in hospital were too brief. Two in five family carers rated their confidence caring for their child's gastrostomy as very low in the first few weeks after surgery. Parents valued ongoing learning and support from other parents and support from community nurses. Videos and simulation practice were rated as useful formats of training, in addition to face-to-face supervised practice with a clinician. Parents liked how real life the example video shown was, and rated nearly all suggested video topics as € very helpful', especially troubleshooting topics. Conclusions: Our study found substantial variability in family carers' descriptions of the training and support they received to care for their child's gastrostomy. Training often did not meet family carers' needs. We need to invest in better training and support for families and learn from their recommendations. Improvements to training and support for families (eg, through instructional videos) have the potential to improve family carers' confidence and competence, and reduce the risk of problems and complications which cause harm to children and increase demand on National Health Service (NHS) resources. 

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Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

Objectives: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability. Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child's therapy. Findings: The proposed definition of therapy-related parental stress is "the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)". A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives. This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research. It is imperative to recognise paramedical therapies (i.e., physical, occupational, and speech and language therapy) as a potential stressor for parents of children with a physical disability, both in paediatric rehabilitation practice and research. Conclusions: A definition and theoretical model of therapy-related parental stress is proposed and the need for measures to evaluate this phenomenon is argued. The authors provide a starting point for the evidence base of the concept of therapy-related parental stress.

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Supporting the Support Network: The Value of Family Peer Work in Youth Mental Health Care

Background: Reported rates of mental illness continue to climb amongst young Australians. In a family environment the carers of these young people play a highly influential role in their recovery process, however this responsibility can also have significant emotional, financial and health impacts on carers. Methods: This paper details the findings of an evaluation project examining the impact and effectiveness of a newly developed and implemented Family Peer Support Work model. Results: Benefits were found which included: family care-givers receiving emotional support and empathy; reduced stress, loneliness, isolation and stigma; bridging between the family and the clinical care team; helping families to navigate through the complexities of the care system; and connecting families to other services. Conclusions: Clarity on role definition for the FPSWs evolved over the course of implementation along with a clearer articulation of the model of care and emergent knowledge on useful elements of training, ongoing professional development, mentoring and wellbeing.

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Steering towards collaborative assessment: a qualitative study of parents' experiences of evidence-based assessment practices for their child with cerebral palsy

Background: To understand parents' experiences of evidence-based assessment by health professionals for their child with cerebral palsy. Method: A qualitative interpretive description study was undertaken. Primary carers of children with cerebral palsy (aged 3–18 years) from south-eastern Australia were invited to participate. Face-to-face interviews were held using a semi-structured topic guide and data analyzed inductively. Credibility was ensured through: journal reflections; co-author review; audit trail; and, participant member-checking. Fourteen parents of children with cerebral palsy, representing Gross Motor Functional Classification System levels I–V, participated. Findings: Six themes emerged: (1) Protection; (2) Positively Framed; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents' experience was protection of their child's identity and personal self. Assessment can be emotionally confronting, at any stage. Representing the child positively and highlighting possibilities was deemed essential. Parents' involvement ranged from being overlooked spectators to being instigators of assessment. Evidence-based assessment was worthwhile when relevant to parents' direction and family context. The researchers' interpretive description generated a schema and metaphor—the Steering Wheel for Collaborative Assessment. A strengths-based approach to diagnosis and assessment is essential. The resulting interpretive description may assist health professionals align evidence-based assessment practices with family-centred care. Parents of children who have cerebral palsy describe having to protect their child's identity and representation, and their own personal well-being, through evidence-based assessment and diagnostic processes. Involving parents in the process of evidence-based assessment and adopting a strengths-based approach is essential. Conclusions: The interpretive description developed—the Steering Wheel for Collaborative Assessment—may assist health professionals to implement evidence-based assessment tools in ways consistent with family-centred care principles.

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Social Support and Family Functioning in Chinese Families of Children with Autism Spectrum Disorder

Background: Families caring for children with autism spectrum disorder (ASD) have reported poorer family functioning. Social support might strengthen family functioning, but limited research to date has focused on this association in China. Methods: This study conducted a cross-sectional survey of Chinese families that have children with ASD to examine the relationship between social support and family functioning. Caregivers of children with ASD from Sichuan province in China (N = 167) were surveyed concerning their perceived social support and family functioning. The Social Support Rating Scale was used to investigate caregivers’ perceived social support from three dimensions: subjective support, objective support, and the utilization of support. A Chinese version of the Family Adaptability and Cohesion Scale was used to investigate their perceptions of family cohesion and adaptability. The Pearson correlation coefficient and stepwise multiple regression were used for analyses. Results: The results suggested that social support was positively related to family cohesion and adaptability. Of the three sub-domains of social support, both subjective support and the utilization of support were positively associated with family cohesion and adaptability. Conclusion: The study’s findings evidenced the importance of different types of social support and could be used to develop a targeted support service for families that have children with ASD to improve their family functioning and sustain the family unit.

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Satisfaction with informal supports predicts resilience in families of children with autism spectrum disorder

Background: The current study examined the role of informal supports in predicting resilience among families of children with autism spectrum disorder. Methods: Participants included 153 caregivers of children with autism spectrum disorder, who were between the ages of 2 and 18 years (M = 10.45; SD = 4.32). Caregivers completed a measure of satisfaction with informal supports as well as the Family Resilience Assessment Scale-autism spectrum disorder. After controlling for demographic factors and child behavioural problems, regression analyses revealed that satisfaction with informal supports significantly predicted family resilience. Results: The findings highlight the importance of specifically strengthening informal support networks when providing services and interventions to families of children with autism spectrum disorder to foster the family's resilience. The study of resilience among individuals with disabilities and their families represents a paradigmatic shift from a deficits orientation towards a more holistic and contextualized approach focused on strength and adaptation. The current study investigated whether informal supports could help improve families' capacity for resilience. We recruited 153 caregivers of children aged between 2 and 18 years who all had a diagnosis of autism. Participants were asked to complete surveys assessing resilience in their families as well as their satisfaction with informal supports (e.g. friends and family). Families more likely to report higher satisfaction with their informal support networks demonstrate greater resilience. The results suggest that informal social supports are a valuable resource for families in strengthening their capacity for resilience. Conclusions: The findings may help inform the development of interventions and services that work collaboratively and innovatively with families and their social networks to provide assistance and support in meaningful and effective ways.

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Safety and family satisfaction of a home-delivered chemotherapy program for children with cancer

Background: Home chemotherapy programs for children with cancer are safe and feasible, and their impact on the quality of life has been reported in different countries. A home chemotherapy program was implemented between 2011 and 2019 in an Italian region. This pilot study investigates its safety and feasibility, along with parental satisfaction. Methods: Patients between 0 and 18 years diagnosed with malignancy were included. Deceased patients and patients whose families moved abroad or interrupted contact with the service were excluded. Adverse events comprised immediate deterioration of the patient's condition, equipment failure, errors in drug storage, dose or patient identification and personnel safety issues. Parental satisfaction was explored through an email survey of 32 Likert-type and short open questions. Results: Thirty-five patients received 419 doses of intravenous chemotherapy at home (cytarabine, vincristine, vinblastine). No adverse events were reported. Twenty-three families out of 25 eligible completed the survey. Most reported being "very satisfied" with the possibility of maintaining a work/domestic routine and reducing time and financial burden of hospital access. Most were "very satisfied" with the opportunity for their child of being less troubled by the treatment. Besides, most reported being "very satisfied" with the chance for healthy siblings of maintaining their routine and coping with their brother/sister's disease. Most perceived the program as safe. All families recommended extending the program to all children in the region. Conclusions: This first Italian study supports home chemotherapy as safe and effective, positively influencing the quality of life for children and their families.

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Resilience of family caregivers of children and adolescents in treatment of neoplasms and associated factors

Objectives: analyze the level of resilience of family caregivers of children and adolescents hospitalized for cancer treatment and associated factors. Methods: cross-sectional study, carried out in 2018, with 62 family caregivers in a university hospital in the state of Rio Grande do Sul, Brazil. The instruments CDRisc-10-Br, SRQ20, PSS-14 and WHOQOL-Bref were used to measure resilience, minor psychological disorders, stress, and quality of life, respectively. Inferential statistics were used. Results: female caregivers, married, with one child and who practice some predominated religion. They were classified as having a moderate level of resilience (48.4%); with suspicion for minor psychological disorders (45%) and high level of stress (41%). In terms of quality of life, they were satisfied in the Physical, Psychological and Social Relations domains; and dissatisfied in the Environment domain. Conclusions: there were direct weak to moderate correlations between the level of resilience and quality of life and inversely with stress and minor psychological disorders.

 

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Relationship Between Quality of Life of Children With Cancer and Caregiving Competence of Main Family Caregivers

Objective: The purpose of this study was to describe the caregiver's proxy-report of the quality of life (QoL) of children with cancer and the main family caregiver's competence, and to examine the role of said competence and other care-related variables in their proxy-reported QoL of children with cancer. Method: This was a cross sectional, correlation design study conducted with 97 main family caregivers of children between the ages of 8 and 12 years with cancer residing in Colombia. The following variables were collected: main family caregiver and child sociodemographic characteristics (Survey for Dyad Care; GCPC-UN-D), The Pediatric Quality of Life Inventory 4.0 Cancer Module, and the Competence Instrument (caregiver version). Results: The mean of the children's QoL was 102.0 points, and the caregivers' competence score was 211.24. Caregiver's competence (t = 5.814, p <.01), marital status (t = 1.925, p <.05), time as a caregiver (t = 2.087, p <.05), number of hours spent caring for the child (t = 2.621, p <.05), and caregiver's previous caring experiences (t = 2.068, p <.05) were found to influence caregiver's proxy-report of the QoL of children with cancer. Conclusions: High competence in main family caregivers positively influence caregiver's proxy-report of the QoL of children with cancer. Study results also suggest that nurses should consider the caregivers' sociodemographic characteristics such as marital status, time as a caregiver, number of hours spent caring for the child, and caregiver's previous experiences because those aspects influence main family caregivers' proxy-report about their children's QoL.

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A randomized controlled trial evaluating the effects of a family-centered HIV care model on viral suppression and retention in care of HIV-positive children in Eswatini

Introduction: A family-centered care model (FCCM) providing family-based HIV services, rather than separate adult/pediatric services, has been proposed to increase pediatric retention and treatment adherence. Materials and methods: Eight health-care facilities in the Hhohho region of Eswatini were randomized to implement FCCM (n = 4) or continue standard-of-care (SOC) separate adult/pediatric clinics (n = 4). HIV-positive children and caregivers were enrolled; caregiver interview and child/caregiver chart abstraction were done at enrollment and every three months; pediatric viral load was evaluated at enrollment and every six months through 12 months. Because of study group differences in 12-month viral load data availability (89.4% FCCM and 72.0% SOC children had 12-month viral load), we used three separate analyses to evaluate the effects of FCCM on children's viral suppression (<1,000 copies/mL) and undetectable virus (<400 copies/mL) at 12 months. In the first analysis, all children with missing viral outcome data were excluded from the analysis (modified intent to treat, mITT). The second analysis used inverse probability of missingness weighted logistic regression to estimate the effect of FCCM on 12-month viral outcomes compared to SOC (weighted mITT). For the third approach, missing virologic outcome data were imputed as virologic failure (imputed ITT). We also examined factors associated with viral suppression at 12 months using multivariable logistic regression. Results: We enrolled 379 HIV-positive children and 363 caregivers. Among all children at enrollment, viral suppression and undetectability was 78.4% and 73.9%, respectively, improving to 90.2% and 87.3% at 12 months. In mITT and weighted mITT analyses, there was no significant difference in children's 12-month viral suppression between FCCM and SOC groups (89.2% and 91.6%, respectively). Using imputed ITT, there was a modest increase in 12-month viral suppression in FCCM versus SOC children (79.7% and 69.8%, respectively, p = 0.051) and 12-month undetectability (78.7% and 65.7%, respectively, p = 0.015). Among the 255 children suppressed at enrollment, more FCCM versus SOC children (98.0% versus 95.3%) were suppressed at 12-months, but this was not statistically significant in mITT or weighted mITT analyses, with a marginally significant difference using imputed mITT analysis (p = 0.042). A higher proportion of children suppressed at enrollment had undetectable viral load at 12 months in FCCM versus SOC children (98.0% versus 92.5%), a statistically significant difference across analytical methods. Among the 61 children unsuppressed at enrollment, achieving suppression was higher among SOC versus FCCM children, but this difference was not statistically significant and included only 38 children; and there were no significant differences in detectable viral load at 12 months. There were no significant differences between study groups in retention or ART adherence at 12 months for children or caregivers. Factors associated with lack of viral suppression/detectability at 12 months included lack of viral suppression at enrollment and having a younger caregiver (age <25 years). Conclusions: FCCM in Eswatini was associated with a modest increase in viral suppression/undetectability at 12-months; 12-month retention and adherence did not differ by study group for children or caregivers. High levels of suppression and retention in both groups may have limited our ability to detect a difference. Trial registration: NCT03397420; ClinicalTrials.gov. 

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Questionnaire survey on transitional care for patients with juvenile idiopathic arthritis (JIA) and families

Objectives: To understand the awareness of transitional care in patients with JIA and their families. Methods: A questionnaire survey on transitional care was conducted among patients with JIA during their transitional period who were attending the pediatric rheumatology of our university and the members of parents' association of JIA (the Asunaro-kai). Results: 57.1% of patients and 35.9% of their parents did not know the word 'transitional care'. Approximately half of them did not have the opportunity to discuss transition or transfer to adult rheumatology. 61.2% of patients and 78.6% of their parents were worried about transition or transfer to adult rheumatology, and their biggest concern was about building trust with a new doctor. Approximately half of them wished to transfer to adult rheumatology after establishing a period of consultation with both pediatric and adult rheumatology. With regard to the timing of transfer, the majority of them wanted to consult with their doctors regardless of their age. The information they wanted to know was the prognosis of the disease itself, the medical system after adulthood, and data on pregnancy and childbirth. Conclusions: The development of transitional care requires that pediatricians and adult rheumatologists work together to listen to the needs of patients and their families. 

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Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study

Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China. Methods: We recruited 101 children aged 0–17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child’s caregivers. The caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic characteristics, disease-specific characteristics, and treatments were collected using the proxy-reported questionnaire. Two-sample t tests and one-way ANOVA were used to compare differences in average scores of QoL across subgroups. Results: Children with type III SMA had a higher average Total score of PedsQL NMM and higher average scores in domains Neuromuscular disease and Family resources than children with type I or type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher average scores in the domains of Physical, Emotional, Social, and Cognitive functioning of the PedsQL FIM than those of children with types I or II SMA (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, stable course of disease, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower average scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and use of the medication Nusinersen were each associated with higher average scores in both PedsQL NMM and FIM (p < 0.05). Conclusion: Our study has demonstrated factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers compared to those with type III SMA. We strongly recommend that standard of care in a multidisciplinary team be strengthened to improve the QoL of SMA patients. Our study called for increased attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and to make better decisions regarding treatment.

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Quality of Life in Caregivers of Children and Adolescents with Autistic Spectrum Disorder: Development and Validation of the Questionnaire

Background: Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals. Methods: The study was performed using the following steps: development of the ASD Parent/caregiver QoL questionnaire (autistic spectrum disorder parent/caregiver quality of life—ASDPC-QoL), subjective evaluation, validation of the questionnaire by the Delphi method, assessment of internal consistency, responsiveness, and reliability of the ASLPC-QoL, and administration of the questionnaire to 881 Brazilian ASD caregivers or parents. ASDPC-QoL comprises 28 questions divided into four domains (social, concerns, physical and mental health) with good psychometric properties (reproducibility, reliability, internal consistency, responsiveness, and validity). Results: Our data showed that worries and physical health were the domains with the lowest scores in ASDPCA-QoL. ASDPCA-QoL did not differ among gender and age of child considering the total and all domains. Older participants (≥41 y/o) presented the best scores for social and worries domains but did not differ in other domains and the total. Parents or caregivers of ASD children diagnosed for more than three years have better mental and physical health domains than those recently diagnosed (up to 1 year) but did not differ in the total and other domains. Individuals with a partner and with the highest educational level present the best score for the social domain. Employed individuals showed better scores than unemployed ones for all domains and the total, except for worries, which did not differ. It also occurred comparing the individuals that do not use antidepressants and the ones that use them. Conclusions: Assessing and better understanding the QoL of caregivers is highly relevant. By understanding the social, worries, physical, and emotional health domains of caregivers, it is possible to track harmful aspects, prevent and treat pathologies, in addition to assisting in the implementation of effective public policies.

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Quality of Life Changes during the COVID-19 Pandemic for Caregivers of Children with ADHD and/or ASD

Background: The COVID-19 pandemic has presented many challenges to caregivers of children. Families with children with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) are an understudied but potentially vulnerable population to changes during the outbreak. As such, the aim of this study was to contrast quality of life for caregivers of children with ADHD and/or ASD, before and during the pandemic, compared to caregivers of neurotypical (NT) children. Methods: Total, Parent Health-Related Quality of Life, and Family Functioning Summary Scores from the Family Impact Module of the Pediatric Quality of Life InventoryTM were contrasted among caregivers of children with ADHD, ASD, comorbid ADHD and ASD, and NT development. For all scores, caregivers of ADHD and/or ASD children reported lower quality of life, both before and during the pandemic, in comparison to caregivers of NT children. Results: For all diagnoses, quality of life decreased during the pandemic, but caregivers of children with ADHD and/or ASD reported a greater decrease in quality of life than caregivers for NT children. Conclusions: There are limitations to this study in terms of the composition of the sample and the survey methodology, but we are able to conclude that caregivers of children with ADHD and/or ASD have been disproportionately affected by the pandemic, and it is imperative that these families receive additional resources and support to improve their quality of life.

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Quality of life among caregivers of children with epilepsy: A cross‐sectional study at Eastern Nepal

Objective: To assess the quality of life among caregivers of children with epilepsy in a tertiary care center of eastern Nepal. Methods: A cross‐sectional study was conducted among primary caregivers of children with epilepsy, who accompanied their child in child neurology clinic. Consecutive sampling was done, and 106 respondents were interviewed. Data were collected using World Health Organization Quality of Life‐BREF (WHOQOL‐BREF) scale and analyzed using Statistical Package for the Social Sciences. Descriptive and Inferential statistics were applied. Results: Mean WHOQOL‐BREF score was 82.25 {standard deviation (SD) ±12. 11}. Transformed scores (0‐100) for each domain were 57.98 ± 14.55 in physical, 55.87 ± 13.16 in psychological, 53.12 ± 13.42 in social, and 52.52 ± 13.04 in environmental domain. Mean score for overall perception of quality of life (QOL) was 2.71 ± 0.79 and was 3.12 ± 0.75 for overall perception of health. Living below poverty line (P = .03) and poor seizure control status of children (P = .46) were significantly associated with lower total QOL score. Living below poverty line was significantly associated with low social relationship (P = .003) and environment domain (<0.001) scores. Conclusions: Epilepsy has a multifaceted impact on the lives of affected people. Caring children with epilepsy is associated with enormous psychosocial effects on parents and family members. Caregivers' QOL may affect the treatment and outcome of epilepsy in children. Given the consideration to scarcity of this kind of literature in Nepalese context, this study was conducted.

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A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated. Methods: This qualitative study investigated the impact of pHLH and its treatment on the physical, emotional, and social well-being of patients and caregivers in the USA and UK using interviews to provide a comprehensive insight from the perspective of the caregivers and young survivors. Results: Twenty-one caregivers were enrolled (median [range] age, 41.1 [26-58] years) and represented 20 patients, four from the UK and 16 from the USA. At enrollment, 17 of the 20 patients were alive with a median [range] age of 12.75 [5-31] years at a mean [range] of 7.8 [0.6-11.6] years after diagnosis. In addition, four adult survivors (median [range] age, 23.3 [21-30] years) were also enrolled (total participants n = 25). From noticing initial symptoms to receiving a diagnosis, caregivers reported a mean (range) of 25.9 (0-258) months. pHLH and its treatment had a substantial and long-lasting impact on patients and caregivers, affecting their physical, emotional and social well-being, family relationships, friendships, and ability to work and study. Many of the experiences reported were negative, even after curative treatment, and some participants experienced long-lasting physical and emotional issues. The most noticeable impact of pHLH for patients was on their physical well-being, whereas for caregivers it was emotional well-being. Across all participants there was a sense of isolation due to the illness and its treatment, particularly regarding the patient being immunocompromised and the fear of infection. Areas having a major impact and considered in need of improvement included: delays in diagnosis, lack of patient-specific information on pHLH and a lack of support and understanding about the condition. Conclusions: pHLH placed a substantial burden on patients and caregivers, which for some were long-lasting. This was compounded by the lack of awareness and understanding of pHLH by healthcare professionals, and a lack of accessible information for those affected by pHLH. 

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Psychosocial Factors Predicting Resilience in Family Caregivers of Children with Cancer: A Cross-Sectional Study

Background: Chronic diseases in childhood can affect the physical and mental health of patients and their families. Objectives: The objective of this study was to identify the sociodemographic and psychosocial factors that predict resilience in family caregivers of children with cancer and to define whether there are differences in the levels of resilience derived from these sociodemographic variables. Methods: Three hundred and thirty family caregivers of children with cancer, with an average age of 32.6 years were interviewed. The caregivers responded to a battery of tests that included a questionnaire of sociodemographic variables, the Measuring Scale of Resilience, the Beck Depression Inventory, the Inventory of Quality of Life, the Beck Anxiety Inventory, an interview of caregiver burden and the World Health Organization Well-Being Index. Results: The main findings indicate that family caregivers of children with cancer reported high levels of resilience, which were associated positively with quality of life, psychological well-being and years of study and associated negatively with depression, anxiety and caregiver burden. The variables that predicted resilience in families of children with cancer were quality of life, psychological well-being, depression and number of children. Family caregivers who were married and Catholic showed higher resilience scores. We conclude that being a caregiver in a family with children with cancer is associated with symptoms of anxiety and with depressive episodes. Conclusions: These issues can be overcome through family strength, well-being, quality of life and positive adaptation processes and mobilization of family resources.

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Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children

Background: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. Results: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33–44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. Conclusion: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.

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Psychological Impact of COVID-19 Outbreak on Families of Children with Autism Spectrum Disorder and Typically Developing Peers: An Online Survey

Background: When COVID-19 was declared as a pandemic, many countries imposed severe lockdowns that changed families' routines and negatively impacted on parents' and children's mental health. Several studies on families with children with autism spectrum disorder (ASD) revealed that lockdown increased the difficulties faced by individuals with ASD, as well as parental distress. No studies have analyzed the interplay between parental distress, children's emotional responses, and adaptive behaviors in children with ASD considering the period of the mandatory lockdown. Furthermore, we compared families with children on the spectrum and families with typically developing (TD) children in terms of their distress, children's emotional responses, and behavioral adaptation. Methods: In this study, 120 parents of children aged 5–10 years (53 with ASD) participated. Results: In the four tested models, children's positive and negative emotional responses mediated the impact of parental distress on children's playing activities. In the ASD group, parents reported that their children expressed more positive emotions, but fewer playing activities, than TD children. Families with children on the spectrum reported greater behavioral problems during the lockdown and more parental distress. Conclusions: Our findings inform the interventions designed for parents to reduce distress and to develop coping strategies to better manage the caregiver–child relationship. 

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Psychological distress and associated factors of the primary caregivers of offspring with eating disorder during the coronavirus disease 2019 pandemic

Background: The Coronavirus Disease 2019 (COVID-19) is a global pandemic and posed serious challenges in many countries. A number of studies before the COVID-19 pandemic have shown that the primary caregivers of the ED patients are subjected to great burden, psychological pressure, and serious emotional problems. This study aimed to investigate the psychological distress level of the primary caregivers of ED offspring during the COVID-19 pandemic. Methods: From March 6 to April 20, 2020, 378 questionnaires for primary caregivers of ED offspring and 1163 questionnaires for primary caregivers of healthy offspring were collected through an online crowdsourcing platform in mainland China. Valid questionnaires that met the criteria included 343 (90.74%) primary caregivers of ED offspring and 1085 (93.29%) primary caregivers of healthy offspring. Using Propensity Score Matching (PSM), 315 (83.33%) primary caregivers of ED offspring and 315 matched primary caregivers of healthy offspring were included in the statistical analysis. Depression, anxiety, perceived stress and social support were measured by Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, Perceived Stress Scale-10 and Social Support Rating Scale, respectively. Results: The rates of depression and anxiety of the primary caregivers of ED offspring were 20.6 and 16.5%, which were significantly higher than those of primary caregivers of healthy offspring (4.1 and 2.2%), all P < 0.001. Regression analysis found that perceived stress, social support, previous or present mental illness, family conflicts during the COVID-19 pandemic had a significant impact on the severity of depression (P < 0.001, P = 0.002, P = 0.041, P = 0.014); Perceived stress, social support, family conflicts during the COVID-19 pandemic and years of education had a significant impact on the severity of anxiety (P < 0.001, P = 0.002, P = 0.002, P = 0.003). Conclusions: During the COVID-19 pandemic, primary caregivers of ED offspring experienced more psychological distress than that of primary caregivers of healthy offspring. ED caregivers with high perceived stress may have higher levels of depression and anxiety. ED caregivers with high social support, no mental illness and no family conflicts may have lower levels of depression. ED caregivers with high social support, no family conflicts, and high years of education may have lower levels of anxiety.

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Primary and secondary caregiver depressive symptoms and family functioning following a pediatric cancer diagnosis: an exploration of the buffering hypothesis

Objective: After diagnosis, caregivers of children with cancer, particularly mothers or primary caregivers (PCs), often show elevated depressive symptoms which may negatively impact family functioning. We tested PC and secondary caregiver (SC) depressive symptoms as predictors of family, co‐parenting, and marital functioning and whether having a non‐depressed SC buffers against potential negative effects of PC depressive symptoms. Methods: Families (N = 137) were recruited from two major children's hospitals following a diagnosis of pediatric cancer. Caregivers completed self‐report measures of depressive symptoms (Center for Epidemiological Studies‐Depression Scale; Depression, Anxiety, and Stress Scale) and marital functioning (Dyadic Adjustment Scale) at 1‐month post‐diagnosis. A subset of families (n = 75) completed videotaped interaction tasks at approximately 3‐months post‐diagnosis that were coded for family and co‐parenting interactions. Results: Higher PC depressive symptoms at 1‐month post‐diagnosis was associated with higher adaptability and lower conflict in family functioning. PC depressive symptoms were also associated lower dyadic consensus and lower dyadic satisfaction. SC depressive symptoms were not significantly associated with any family/co‐parenting/marital functioning variables. Significant interaction analyses suggested that SC depressive symptoms moderated the effect of PC depressive symptoms on family cohesion, withdrawn parenting, and affective expression in the marriage, such that the relationship between PC depressive symptoms and poorer functioning was attenuated when SC depressive symptoms were at low or average levels. Conclusions: Having a nondepressed SC buffered against negative effects of PC depressive symptoms on certain domains of family, coparenting, and marital functioning. SCs may play a protective role for families of children with cancer.

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Prevalence of mental illness among parents of children receiving treatment within child and adolescent mental health services (CAMHS): a scoping review

Background: People affected by mental illness often come from families with patterns of mental illness that span across generations. Hence, child and adolescent mental health services (CAMHS) likely provide treatment to many children with parents who also experience mental illness. Objectives and Methods: The aim of this scoping review was to: (1) identify the prevalence of mental illness among parents of children in CAMHS; (2) identify and appraise the methodologies that have been implemented to assess the prevalence of parental mental illness in CAMHS; (3) identify additional circumstances associated with families where both parent and child experience mental illness; and (4) present recommendations that have been made for CAMHS practice based on these findings. English language, peer-reviewed studies (2010–2018) that had investigated the mental health of parents in CAMHS were included in the review. Findings: Literature searching yielded 18 studies which were found to have utilised diverse methodologies to assess parental mental health. Overall, reported prevalence of parental mental illness ranged from 16 to 79%; however, a single study that was deemed to be comprehensive reported prevalence rates of 36% for mothers and 33% for fathers. Across studies, parent and child mental illness was found to be associated with additional adversities impacting family functioning and wellbeing. Conclusions: For children who receive treatment for mental illness, having a parent who also experiences mental illness is a frequent family circumstance that has implications for their prospects for recovery. Accordingly, the mental health of parents should be an important consideration within the mental health care CAMHS provide to children.

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Predictors of Caregiver Strain for Parents of Children with Autism Spectrum Disorder

Background: Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Methods: Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Results: Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Conclusions: Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.

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Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis

Background: Pediatric cancer diagnosis and treatment can impact the psychological adjustment and quality of life (QOL) of caregivers. Objectives: We examined: (a) the relationship between caregiver QOL and family psychosocial risk, mental health symptoms and distress concurrently, shortly after diagnosis, and six months later; and (b) which of these factors at near diagnosis can predict caregiver QOL six months later, controlling for demographic and child clinical factors. Methods: Participants were 122 caregivers in two Canadian sites. Each completed the Caregiver Quality of Life Cancer Scale, the Psychosocial Assessment Tool (PAT), the Distress Thermometer (DT), and the Hospital Anxiety and Depression Scale (HADS) near diagnosis (T1) and six months later (T2). Clinical and demographic information were also collected. Results: Clinical and demographic factors were not associated with QOL at either T1 or T2. Concurrent analyses (within T1 and T2) indicated the PAT, DT, and anxiety symptoms as significant factors contributing to caregiver QOL. Longitudinally, only T1PAT and depression symptoms significantly predicted caregiver QOL at T2. Family psychosocial risk and caregiver depression symptoms near diagnosis predict caregiver QOL six months later. These results have important implications for supporting caregivers of children with cancer. Highlights: Childhood cancer diagnosis and treatment can negatively impact on the quality of life (QOL) of caregivers of the affected child. High family psychosocial risk and elevated caregiver depression symptoms near the child's cancer diagnosis can predict poor caregiver QOL six months later. Conclusions: Early assessment of family psychosocial risk and caregiver mental health, particularly depression symptoms, can guide psychological support and prevent poor caregiver QOL. Considering the close relationship between the wellbeing of the child and caregiver, addressing caregiver mental health needs can positively impact on the QOL of the caregiver and the child with cancer.

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Perceived caregiving preparedness and quality of life among Indonesian family caregivers of patients with life-limiting illness

Background: Family caregivers play an important role in palliative care. However, family caregivers often report that they felt insufficiently prepared to become a caregiver. This lack of preparedness may lead to a decline in the caregiver s quality of life (QoL), and they may not be able to provide sufficient palliative care to their family member. Aims: To investigate the preparedness of family members to become caregivers alongside their QoL. Method: A correlational cross-sectional study design was used. A sample of 104 family caregivers completed a World Health Organization Quality of Life Brief to assess the QoL of participants. The Caregiving Inventory (CGI) was used to assess how prepared family members felt to become care-givers, and the CGI also included questions related to the patient s socio-demographic status and illness. Correlation analysis was used to address the research questions. Caregivers were caring for a family member with a life-limiting illness in a suburban district of Indonesia. Findings: The 104 family caregivers had a relatively low score for both QoL and caregiving preparedness. A caregiver feeling more prepared was associated with a higher QoL. The study also found a positive correlation (r value, between 0.236 0.481) between perceived caregiving preparedness, including its factors, and domains of QoL. Conclusion: A person s preparedness to become a caregiver is significantly associated with all QoL domains: physical, psychological, social and environmental. Family members can be better prepared to become a caregiver with training and information about personal care and symptom management. 

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Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT

Backgrounds and Objectives: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. Methods: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. Results: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). Conclusions: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

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Parents' and caregivers' satisfaction with community‐based rehabilitation (CBR) services for children with disability in east coast states in Peninsular Malaysia

Background: The Community‐Based Rehabilitation (CBR) services under the Malaysian Ministry of Women, Family and Community Development have provided two types of services for disabled children: centre‐based and home‐based care since 1984. Methods: A cross‐sectional study was conducted among parents and caregivers with children receiving treatment at CBRs on the east coast of Peninsular Malaysia, to determine the level of satisfaction with the services provided. Respondents were recruited via multi‐staged sampling, and simple randomisation at CBR level. Respondents self‐administered the Physical Therapy Satisfaction Questionnaire (PTSQ) and provided sociodemographic data. Results: A total of 297 respondents were recruited and all the questionnaires were returned complete, making the response rate 100%. Total satisfaction scores and factors influencing respondents’ satisfaction for both groups were analysed. The mean total satisfaction score for centre‐based and home‐based were 84.69 (SD = 10.01) and 75.30 (SD = 12.23; t = 7.160, p ≤ .001) respectively. Ninety‐eight per cent of centre‐based and 89% of home‐based respondents were satisfied with the current services. There were significantly mean differences in the satisfaction level of respondents of different states respectively (Kelantan mean 84.92 10.83, Terengganu mean 77.49 11.16 and Pahang mean 77.47 12.93, p ≤ .001). Factors associated with satisfaction were education (p = .002), occupation (p = <0.001), monthly income (p = .001) and source of income (p = .001). Conclusions: In conclusion, majority of parents and caregivers were satisfied with current services provided at CBR and satisfaction with services was dependent on CBR centre location and education and financial earning capacity.

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Parent–Child Relationship Quality as a Mediator of the Association between Perceived Stress and Diabetes Self-Management in Adolescents With Type 1 Diabetes

Background: Diabetes self-management is suboptimal in adolescents with type 1 diabetes (T1D), including those in China. Objectives: The aim of the study was to investigate the impact of parent–child relationship quality on diabetes self-management. Data were collected by a self-report survey among 122 Chinese adolescents from April to July 2017. The data were analyzed using a one-way analysis of variance, descriptive analyses, correlation analyses, and mediation analyses. Results: The mean age was 13.8 (range, 10–18) years, and the mean diabetes duration was 4.1 (±3.1) years. About half of the adolescents with T1D experienced high levels of perceived stress. Parent–child relationship quality mediated the associations between perceived stress and collaboration with parents, diabetes care activities, and diabetes communication on aspects of diabetes self-management (p s < 0.05). Conclusion: To reduce the negative impacts of perceived stress on diabetes self-management in this population, parent–child relationship quality should be considered an important element of family-based interventions and clinical practice.

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Parental Stress in Primary Caregivers of Children with Evidence of Congenital Zika Virus Infection in Northeastern Brazil

Background: Despite the well-known role of parents as caregivers, few studies have addressed their health outcomes related to the Zika virus epidemic. Methods: A cross-sectional study was carried out with 146 primary caregivers of children 15–26 months of age, with laboratory and/or clinical evidence of Zika infection between August and October 2017 in three Brazilian municipalities: João Pessoa and Campina Grande in the state of Paraíba and Fortaleza in the state of Ceará. Caregivers reported on their child's life and health, family circumstances and underwent screening for stress using the Parenting Stress Index-Short Form. Children were evaluated for developmental delays and clinical outcomes. Differences in the prevalence of risk factors between caregivers with high or clinically relevant stress and those with normal stress were evaluated. Results: Of the 146 participants, 13% (n = 19) were classified as having high or clinically relevant stress, all of them mothers. The two risk factors significantly and independently associated with high levels of stress, compared with individuals with normal stress levels, were "reporting difficulty in covering basic expenses" (adjusted OR 3.6 (95% CI 1.1–11.8; p = 0.034)) and "having a child with sleep problems" (adjusted OR 10.4 (95% CI 1.3–81.7; p = 0.026)). Conclusions: Some factors seem to contribute significantly more than others to the level of stress experienced by caregivers of children with evidence of Zika virus congenital infection. Interventions and preventive strategies should also target caregivers, who in turn will be able to respond to the unique characteristics of their child.

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Parental Feeding Concerns for Children With Autism Spectrum Disorder: A Family-Centered Analysis

Background: This study identifies and describes feeding concerns of parents of children with autism spectrum disorder (ASD) and examines the extent to which parents relate those concerns as having been addressed by therapists. Methods: Survey data were collected from 113 parents of children with ASD. Results: Of the parents surveyed, 68% described a past or present concern with feeding; 60% of those parents with concerns said a therapist had not addressed those concerns. Feeding concerns were more likely addressed when therapists shared parent's concerns. Specific types of concerns, such as those around food selectivity and food refusal, were more likely addressed than difficulties around mealtime. A gap is identified between parental report of feeding difficulties and parental report of professional services addressing feeding needs. Conclusion: This analysis presents an opportunity for occupational therapists in the area of feeding, particularly around identifying and addressing parental concerns.

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Parental caregiver burden and recovery of adolescent anorexia nervosa after multi-family therapy

Background: This study investigated whether parental caregiving burden changed during adjunct multi-family therapy of adolescent anorexia nervosa and eating disorders not otherwise specified (EDNOS) and whether caregiver burden at baseline and changes in caregiver burden during treatment were associated with treatment outcome. Methods: Twenty-four females, 13 to 16 years old, and their parents, participated in the study. Caregiver burden was measured with the Eating Disorders Symptom Impact Scale, by mothers (n = 23) and fathers (n = 22). Treatment outcome was measured by adolescent body mass index, level of global functioning and self-rated eating disorder symptoms by the Eating Disorders Examination Questionnaire 4.0. Results: All patient outcomes improved and overall caregiver burden decreased significantly during treatment. When broken down in aspects of caregiver burden the decrease in parental perceived isolation, was found to be associated with improvement of BMI and Children's Global Assessment Scale. When analyzing fathers and mothers separately, we found that maternal feelings of guilt and paternal perceived burden of dysregulated behaviors at base-line were correlated to treatment outcome. Conclusions: Future studies are needed to clarify the role of caregiver burden as a potential mediator of treatment results.

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Parent Perspectives on Educational and Psychosocial Intervention for Recent-Onset Type 1 Diabetes in Their School-Age Child: A Qualitative Study

Objective: The recent-onset period of type 1 diabetes (T1D) in early school-age children should include comprehensive, parent-focused T1D education as well as family-centered resources and support to help with adjustment. Here, we present parent/caregiver perspectives on specific areas of concern during the recent-onset period of T1D and their preferred timing for different topics related to T1D education. Methods: Parents/caregivers of 5- to 9-year-old children with T1D completed a card-sorting task and qualitative interview to describe ongoing areas of concern and preferred educational topics during the first year after T1D diagnosis. Results: Thirteen parents/caregivers (aged 35.1 ± 6.9 years) of a child with T1D (aged 8.9 ± 0.8 years, 11.3 ± 7.0 months post-diagnosis) completed the card-sorting task, and 11 completed the qualitative interview. Parents/caregivers endorsed four preferred stages of education: basic education and T1D survival skills during month 1 post-diagnosis, application and practice of T1D skills from months 1–3, access to community supports to cope with anxiety and distress from months 3–6, and support to build autonomy and manage burnout beyond month 6 post-diagnosis. Parents/caregivers endorsed four main themes for ongoing concerns: anxiety, autonomy, distress, and support. Conclusion: Parents endorsed four time points for education and psychosocial services within the first year of a T1D diagnosis. Parents/caregivers may benefit the most from psychosocial interventions 3–6 months post-diagnosis, once they have had sufficient time to develop basic T1D management skills. These findings support the need for regular parent psychosocial screening and access to scalable psychosocial interventions in the first year post-diagnosis of T1D.

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Parent Experiences With Electronic Medication Monitoring in Pediatric Asthma Management: Qualitative Study

Background: Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. Objective: The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers’ experiences of managing their child’s asthma, and (2) what do parents recommend for improving the intervention in the future? Methods: Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. Results: Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child’s health, (4) emotional impact of the intervention, (5) child’s engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. Conclusions: Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma.

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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. 

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The Road to Family Resiliency: A Case Report of a Family's Experiences Following Adolescent Stroke

Purpose: This study generated an understanding of familial resiliency following an adolescent's stroke and what resiliency-related outcomes were important to this family. Design and Methods: A qualitative case study design was used to collect data during an in-person interview. The interview was transcribed verbatim and analyzed using thematic analysis. Findings: Participants' narratives revealed that reengaging and establishing new activities, reconstructing identities, and changing perceptions regarding health and life itself were important resiliency-related outcomes. Conclusions: The findings from this case study highlight innovative strategies that can be used to facilitate resiliency during strenuous times in a family's life, such as following an adolescent's stroke. Clinical Relevance: Clinicians and service providers have the opportunity to help facilitate resiliency by identifying which protective factors and positive outcomes are most important to a family following an adolescent's stroke, allowing clinicians to assist in achieving these outcomes. This research illustrates ways for families to convert resources into personally meaningful resiliency-related outcomes. Further research is needed to study familial resiliency as a part of an intervention to promote occupational engagement.

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Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review

Background: In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. Methods: The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. Results: We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. Conclusions: This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.

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Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19

Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

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A Model of Factors Influencing Asthma Control among Preschool Children as Perceived by Family Caregivers

Background: Asthma is the most common non-communicable disease among children and the prevalence of childhood asthma is increasing in Vietnam. Often, due to the stage of development of the child and the illness, control of asthma in pre-school age children depends on family caregivers. To design effective interventions for asthma control, understanding family caregivers' perceptions of factors that influence such control is necessary. Thus, this cross-sectional study developed and tested a model of how perceived social support, satisfaction with nursing care, access to healthcare and family management work to explain asthma control among pre-school age children. Methods: A convenience sample of 328 primary family caregivers of pre-school age children with asthma from three public hospitals in Da Nang, Vietnam was recruited. Questionnaires used were a demographic form, and Vietnamese versions of the Best Asthma Control Test for Preschoolers, the Modified Social Support Questionnaire, the Access to Healthcare Instrument, and the Patient Satisfaction with Nursing Care Quality Questionnaire. The SPSS version 18 and the AMOS program were used to test the model. Results: Findings revealed that the hypothesized model fitted with the data and explained 38% of the variance in asthma control. Contextual factors had a direct effect on asthma control and an indirect through family management. Family management had a significant direct positive effect on asthma control. Among these factors, perceived social support had the strongest total effect whereas access to health care had the strongest direct effect on asthma control. Conclusion: Nurses can use this finding to strengthening support from significant people to improve family management and strengthen access to health care using various strategies such as telehealth to support asthma control.

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A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings

Background: Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision making. Objective: The aim of this study is to adapt a mobile health (mHealth) app originally developed in Sweden to the needs of patients, families, and health care providers in a CF center in the United States and to test it as a platform for sharing patient-generated health data with the CF health care team. Methods: Focus groups with health care providers of patients with CF, adolescents with CF, and caregivers of children with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of patient-generated health data to a secure Research Electronic Data Capture database was tested. Protocols for data management and clinical follow-up were also developed. Results: A total of 5 focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the health care team; language and presentation; sharing and privacy; and settings and accounts. Overall, health care providers recommended changes to align the mHealth platform with US standards of care, people with CF and their caregivers requested more tracking functionalities, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta testers of the modified platform reported issues related to translatability to US environment and various bugs. Conclusions: This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered to meet both end users’ needs and evidence-based practice recommendations.

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Medical Device Workarounds in Providing Care for Children With Medical Complexity in the Home

Objectives: Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs. Methods: We conducted 30 contextual inquiry interviews with families of CMC in homes. Interviews were recorded, transcribed, and analyzed for barriers and workarounds specific to medical device usage through a directed content analysis. We used observation notes and photographs to confirm and elaborate on interview findings. Results: We identified 4 barriers to using medical devices in the home: (1) the quantity and type of devices allotted do not meet family needs, (2) the device is not designed to be used in locations families require, (3) device use is physically or organizationally disruptive to the home, and (4) the device is not designed to fit the user. We also identified 11 categories of workarounds to the barriers. Conclusions: Families face many barriers in using medical devices to care for CMC. Our findings offer rich narrative and photographic data revealing the ways in which caregivers work around these barriers. Future researchers should explore the downstream effects of these ubiquitous, necessary workarounds on CMC outcomes toward developing interventions that optimize device use for families.

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Mediating effects of family functioning on the relationship between care burden and family quality of life of caregivers of children with intellectual disabilities in Mongolia

Background: Intellectual disabilities are characterized by constant and complex needs for care that place a heavy burden on the families of affected individuals and affect their overall quality of life. We evaluated the mediating effects of family functioning on the relationship between care burden and the family quality of life of caregivers of children with intellectual disabilities in Mongolia. Methods: Data were collected from a sample of 150 caregivers of children with intellectual disabilities from October 2017 to November 2017. Multiple linear regression analyses were performed to examine the mediating effects of family functioning. Results: Family functioning had a partial mediating effect (β =.702, p <.001) on the relationship between care burden and family quality of life. Conclusion: Family functioning should be considered when developing a social support intervention to improve family quality of life among caregivers of children with intellectual disabilities.

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Longitudinal predictors of caregiver resilience outcomes at the end of childhood cancer treatment

Objective: Caregiver resilience in the context of childhood cancer treatment has been described using cross‐sectional and retrospective studies, but little is known about prospective predictors of resilience outcomes. We examined associations of demographics, cancer‐related variables, and intrapersonal and interpersonal factors at diagnosis (family psychosocial risk, perceived social support, and healthcare self‐efficacy) and psychosocial services provided during treatment with caregiver resilience outcomes at the end of treatment. Methods: For a study validating a family psychosocial risk screener, 314 primary caregivers completed the measures at diagnosis of their child (aged 0–17 years) and when cancer treatment ended. Resilience outcomes were ratings of distress, posttraumatic stress, and posttraumatic growth. Multiple regression analyses evaluated the relative contribution of hypothesized predictors. Results: Caregivers endorsed clinically significant distress, moderate posttraumatic growth, and low posttraumatic stress based on norms. Posttraumatic growth was not associated with posttraumatic stress or distress, which were significantly associated with each other. Over and above resilience at diagnosis, family psychosocial risk was associated with resilience at the end of treatment. Perceived social support, healthcare self‐efficacy, and psychosocial services provided demonstrated associations with resilience in univariate analyses, but demographics and cancer‐related variables did not. Conclusions: Resilience and family psychosocial risk at diagnosis were the strongest predictors of caregiver resilience outcomes at the end of the treatment. Intrapersonal and interpersonal predictors were weaker and varied by resilience measure. Consistent with psychosocial standards of care, broad evaluation of caregiver risks, resources, and resilience processes and outcomes is recommended at diagnosis and through the treatment trajectory including the end of treatment.

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The lived experience of family members who care for children with cancer: An interpretative phenomenological approach

Objectives: This study aimed to explore the lived experiences of family carers in the care of children with cancer. A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Methods: Fourteen interviews were conducted with family members: mothers (n = 9), grandmothers and fathers (n = 5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. Findings: Three major themes emerged from the data analysis. The first theme was the caring experience, which included three subthemes: changing priorities over time, information given about children's illness, and parents suffering due to treating irritable children. The second theme was the challenges to effective care, which illustrates the most significant challenges faced during caring, including the effects of family relations and emotional support. The final theme was around the support system; family carers found several resources to support them in their children's care, including other parents' experiences with similar diseases, the hospital environment, and their religious beliefs. Conclusions: This study informs parents and healthcare providers about the daily lived experiences of family carers. Healthcare providers can fulfil a significant role in giving emotional support and relief to family carers. However, they will need continuous practise to equip them with the communication skills they require to deal with the family carers in these difficult situations. 

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“Like filling a lottery ticket with quite high stakes”: a qualitative study exploring mothers’ needs and perceptions of state-provided financial support for a child with a long-term illness in Finland

Background: A child’s long-term illness or disability is always a serious matter that impacts the whole family. Costs related to an illness can substantially affect a family’s financial situation. To date, there is little research on how parents experience available support for financial assistance. Surveys in Finland have found that families of children with long-term illnesses and disabilities could experience financial struggle and perceive the state provided financial support system as too complex. Objectives: This article aimed to explore how caregivers of children with long-term illnesses perceived their financial situation, need for financial support and experienced its provision by the state in the Helsinki greater region. Methods: Convenience sampling was used. Participants were contacted through peer-support groups on Facebook. Eleven mothers of children with varying long-term illnesses and disabilities residing in the Helsinki greater region were interviewed using in-depth interviews. Recordings of the interviews were transcribed and analysed using framework analysis. An analytical framework was built to label the dataset, which was then charted. Lastly, themes were formed through descriptive analysis. Results: The main findings showed how the burden of caring for a child with a long-term illness or disability causes fatigue, which affects a family’s financial situation holistically. This affected both employment and financial management, but also receiving information about and applying for the state provided allowances. Mental resources were further depleted by seeking information and applying for allowances. This contributed to a vicious cycle between parental fatigue and financial struggle. Participants found the allocation of funds inequitable across the country. Finally, participants thought the allowance was insufficient in compensating for time spent caring for their child’s illness and did not consider their mental strain. Conclusions: Even in a welfare state such as Finland, caregivers of children with long-term illnesses are at risk of poverty and struggle with the organization of state provided financial support. Policies should be designed to ensure equity across the country and consider how the parental fatigue should be addressed. The study has implications for achieving sustainable development goals on wellbeing and reducing poverty.

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Life is different now – impacts of eating disorders on Carers in New Zealand: a qualitative study

Background: Eating disorders are widely recognized as serious illnesses, with complex psychological and physiological comorbidities. Affected individuals face a protracted and challenging treatment journey which, particularly for children and adolescents, requires significant input from family members as carers. This study investigated the perspectives and experiences of those caring for family members with an eating disorder diagnosis. Method: Participants were carers of affected individuals with an eating disorder, and were recruited from an online survey, subsequently consenting to a semi-structured qualitative interview. Inductive thematic analysis was undertaken to identify themes. Results: Most participants in the sample were parents of affected individuals. Significant and ongoing psychological and emotional impacts were identified across the sample. The diagnosis, treatment journey and overall impact of the carer role created a situation captured by the over-arching theme ‘life is different now’. Impacts profoundly influenced relationships and were felt across all aspects of life by carers, affected individuals and other family members. Heightened worry and vigilance experienced by carers continued beyond improvement or recovery. Conclusions: This research highlighted challenging and often exhausting impacts felt by carers due to their pivotal role in eating disorder treatment. Inadequate support for most carers in this sample has clear implications for families as well as service and funding providers. Further research should more fully investigate carer experience with different eating disorders to explore the type of support necessary to build capacity and resilience to reduce carer burden.

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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

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.

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It Is Time to Improve How We Deliver Services to Children and Families

The author urges social services professionals to improve upon social services to children and families, particularly families with special needs children. The author critiques neoliberal concepts that she believes have found their way into social services, states that contemporary social services work best for families with financial means, and systemic change is needed.

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Information Needs and Resources and Self-Management Challenges of Parents Caring for a Child with Asthma in China

Objectives: The aim of this assessment was to determine the information needs, resources, and resource preferences and self/family-management challenges of parents caring for a child with asthma in China. The acceptance of asthma and consolidated framework for implementation research guided the study. Methods: A cross-sectional, descriptive design was used. Seventy-one parents of a child receiving care in an outpatient respiratory clinic completed a three-part, pragmatic, self-report survey. Quantitative data were analyzed using descriptive statistics and qualitative data using thematic analysis. Findings: Parents, who needed more knowledge about asthma, sought information from internet sources. However, most parents preferred receiving information during in-person consultation with trained specialists. Management challenges revolved around understanding asthma information, formulating beliefs about asthma, experiencing distressing thoughts and feelings, forming supportive networks, and meeting their child's emotional needs. Conclusion: Evidence supports expanding nursing roles in China to include extended time for initial in-person parental interactions and follow-up using reliable clinic-based internet counseling.

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Informal Caregiving and Disaster Risk Reduction: A Scoping Review

Background: Informal caregivers are a population currently in the shadows of disaster risk reduction (DRR), and yet essential to the provision of healthcare services. This scoping review explored the literature to understand issues related to informal caregiving and promising practices to support resilience for disasters. Methods: Following guidelines for scoping review as outlined by Tricco et al. (2016), relevant publications were identified from five major databases—Medline, Embase, PubMed, Web of Science, and Scopus. Relevant studies referenced informal caregiving and disasters for a variety of population groups including children, people with disabilities or chronic illnesses, and older adults. Studies were excluded if they discussed formal caregiving services (for example, nursing), lacked relevance to disasters, or had insufficient discussion of informal caregiving. Results: Overall, 21 articles met the inclusion criteria and were fully analyzed. Five themes were identified: (1) the need for education and training in DRR; (2) stressors around medication and supply issues; (3) factors affecting the decision-making process in a disaster; (4) barriers leading to disaster-related problems; and (5) factors promoting resilience. Recommended areas of strategic action and knowledge gaps are discussed. Many informal caregivers do not feel adequately prepared for disasters. Conclusions: Given the important role of informal caregivers in healthcare provision, preparedness strategies are essential to support community resilience for those requiring personal care support. By understanding and mobilizing assets to support the resilience of informal caregivers, we also support the resilience of the greater healthcare system and the community, in disaster contexts.

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Influence of a Child’s Cancer on the Functioning of Their Family

Background: A child’s cancer affects their entire family and is a source of chronic stress for a sick child, as well as for their parents and siblings. It deprives them of the feeling of security; introduces uncertainty, fear and anxiety; and destabilises their life. It mobilises the family since they have to reconcile the treatment and frequent appointments at the hospital with the hardships of everyday life. The emotional burden they have to deal with is enormous. Recognition of the needs of such a family allows for the implementation of support, psychosocial care and psychoeducation, as well as the provision of reliable information. Patients and Methods: A population survey was conducted between 2015 and 2020. Caregivers of children diagnosed with cancer were invited to participate in the study to assess their problems and needs. Results: All respondents in their legal status were parents of children with cancer. The study included 800 people, where women accounted for 85% and men accounted for 15%. The mean age of the mother was 38.09, SD = 7.25, and the mean age of the father was 41.11, SD = 7.03. The occurrence of problems negatively correlated with both the age of the parents (p < 0.0001) and the level of education (p < 0.0001). Parents who admitted having financial problems more often reported problems of a different kind; moreover, financial problems were more often reported by parents of children who were ill for a longer time (p = 0.01). Conclusions: Parents of children suffering from cancer reported numerous psychological, social and somatic problems. The identification of problems through screening should translate into specific interventions, thus creating support for the families of children with cancer. Promoting coping with difficult emotions and the ability to solve problems when a child is ill has a positive effect on the functioning of the family.

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Impacts of COVID‐19 on caregivers of childhood cancer survivors

Purpose: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods: A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being. Results: Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow‐up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID‐19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self‐isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID‐19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001). Conclusions: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID‐19. To better serve caregivers and medically at‐risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID‐19 may differentially impact their children.

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The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2

Background: Rare and severe neurological disorders in childhood not only heavily affect the life perspective of the patients, but also their caregivers and families. Objectives: The aim of this study was to investigate the impact of such diseases on the family, especially on the quality of life and life perspectives of parents, but also on the families’ everyday life, based on the model of two diseases which have been well described in recent years with respect to symptoms and course: metachromatic leukodystrophy (MLD) and pontocerebellar hypoplasia type 2 (PCH2). PCH2 is a primary severe developmental disorder, while children with MLD initially develop normally and then progressively deteriorate. Methods: Using a semi-standardized questionnaire, 43 families with children suffering from MLD (n = 30) or PCH2 (n = 19) reported data on the severity of the illness/symptoms, on family support and the care situation, as well as on the circumstances of non-affected siblings and the parents’ work situation. In addition, the quality of life of parents and general family functioning was assessed using the PedsQL™ Family Impact Module [23]. Results for the latter were compared to published data from families with children without any chronic condition using student’s t-tests for independent samples. Potential factors influencing the PedsQL™ scores were analyzed using Spearman’s rank correlation. Results: Parents of children with MLD and PCH2 reported significantly lower health-related quality of life (HRQOL) compared to parents of healthy children (P < 0.001). Mothers showed significantly poorer HRQOL (P < 0.05) and were significantly more dissatisfied with their professional development (P < 0.05) than fathers, and this was seen in relation to their child's disease. Neither the form of disease (‘primary’ symptomatic PCH2 or ‘secondary’ symptomatic MLD), nor the severity of the child’s illness (in terms of gross motor and speech function) had a specific impact on HRQOL in families. However, the time from diagnosis and advanced symptoms in the terminal disease stage were experienced as especially distressing. Conclusions: This study illustrates that MLD and PCH2 affect mothers in particular, but also the entire family. This underlines the need for personalized care and counselling of parents and families, especially following diagnosis and during the end stage in a child with a severe, rare chronic neurological disorder.

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Impact of medical home-consistent care and child condition on select health, community, and family level outcomes among children with special health care needs

Objectives/Methods: Using the 2009/2010 National Survey of Children with Special Health Care Needs (CSHCN), we investigated the impact of medical home-consistent care and child condition on five outcomes for CSHCN (n = 32,299). Results: Models suggested that medical home-consistent care predicted increased odds of preventive services receipt, no unmet health or family support needs, ease of use of community-based services, and shared decision-making. Despite these positive effects, disparities persisted based on insurance, condition complexity, and household income. Conclusions: These findings illustrate the positive impacts of medical home-consistent care on children yet remind health professionals of the unique family circumstances that ultimately impact health and wellbeing.

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Impact of COVID-19 on the Mental Health and Well-Being of Latinx Caregivers of Children with Intellectual and Developmental Disabilities

Background: The COVID-19 pandemic has impacted the entire world in unprecedented ways. However, populations that have had a history of marginalization have experienced a more profound impact. One such group is Latinx families of children with intellectual and developmental disabilities (IDD) in the Unites States. Methods: In this study, we used a mixed methods approach to explore the impact of the pandemic on the mental health and well-being of Latinx caregivers of children with IDD. Results: Specifically, we (1) identified which social determinants of health are correlated with maternal caregivers perceived general health, mental health, and well-being; (2) explored the impact of the pandemic on families’ overall eating and physical activity routines; and (3) identified emergent themes from caregivers’ experiences during the pandemic. Thirty-seven Latinx caregivers participated in three interviews in which several validated instruments were administered. The results indicated that perceived social support, annual family income, food security, and receipt of financial benefits were correlated with fewer depressive symptoms. Annual family income was also significantly correlated with perceived general health. Most caregivers reported that the pandemic had placed a strain on their economic situation; increased their isolation; and disrupted their child’s therapeutic supports, online education, eating routines, and engagement in physical activity. Meanwhile, some caregivers reported positive changes as a result of the pandemic. Conclusions: Implications for future research and practice are discussed.

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The Impact of a Brief Home-Based Intervention on Families with a Child with Autism Spectrum Disorder

Background: A brief intervention is described and evaluated that aimed to build and strengthen relationships for families of children diagnosed with ASD aged 12 and under. Methods: A particular focus was on socially disadvantaged parents. Parents were offered around five home visits which took place on weekdays during working hours; each lasting around 90 min. They were given individualised practical tools and support to manage their children's behaviours alongside providing a listening ear to parents' concerns. Findings: In all, 456 children and 427 families participated over a four-year period with a take-up rate of 87% of all referrals. The drop-out rate was low (4.5%) as was the proportion of missed and cancelled appointments. Parents' satisfaction ratings were high and most found the number of sessions provided was 'just right'. Children improved in their personal care, had less difficulty with change, showed less anger and had fewer meltdowns. Parents reported being less stressed, not feeling so down and managing their child better. Conclusions: The evaluations suggested that a brief home-based intervention is a viable and effective means of providing personalized, post-diagnostic support to parents at periodic intervals, although socially disadvantaged families may require additional assistance beyond managing their child's ASD. The project also highlighted broader issues that impede effective support for families. 

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Illness as Experienced by Parents of Children With End-Stage Renal Disease: The "Ill Unit"

Objectives: The purpose of this study is to shed light on the experience of parents of children who suffer from various stages of renal failure. Methods: Semistructured qualitative interviews conducted with 12 parents were analyzed using the interpretative phenomenological analysis method. Findings: Eight themes were identified and organized into two superordinate themes: intrasubjective experience and intersubjective experience. Based on our analysis, we argue that the illness is experienced as a mental system extending beyond the space and boundaries of the child's body to include his or her parents which we refer to as the ill unit. Conclusions: We have borrowed Winnicott's concept of primary maternal preoccupation in order to emphasize the role and position of parents of chronically ill children. Consequently, we propose a relational perspective in which psychological support should be delivered to the ill unit (parents and child).

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"I was always struggling": Caregivers' experiences of transitioning a child from oral to long‐term non‐oral feeding at an out‐patient hospital clinic in South Africa

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes.

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Home and Parent Training Strategies for Pediatric Feeding Disorders: The Caregivers’ Perspective

Background: Twenty to 45% of the general pediatric population experience feeding problems. When children with disabilities exhibit feeding problems, they are more likely to develop maladaptive mealtime behaviors that may lead to poor nutrition. Home training to help treat a child’s feeding delay or disorder is a vital component of feeding treatment and supports holistic, family-centered treatment models. It is important for occupational therapists working with this population to understand the impact of these behaviors on individual and family functioning. Method: This quantitative study examined caregivers’ perspectives of the training families receive to support their child’s feeding delay or disorder, and how family mealtimes may be affected. One hundred and eight participants completed an online survey using primarily Likert scale questions. Results: Caregivers report that (a) they are receiving current and evidenced-based interventions; (b) they feel supported, yet feel they need more support; (c) family relationships are adversely affected by a child’s feeding challenges; (d) caregivers desire to connect with other caregivers of children with feeding delays or disorders; and (e) they need stress management and coping strategies. Conclusion: Feeding treatment is strengthened with more family-focused topics like family relationships and interactions, caregiver burden and stress management, and increased caregiver support.

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Health-Related Quality of Life and Family Functioning of Primary Caregivers of Children with Cerebral Palsy in Malaysia

Background: Caregiving for children with cerebral palsy (CP) has proved to negatively impact on the physical and psychological well-being of their primary caregivers. Objective: The aim of the current study was to examine the overall impact of caregiving for children with CP on the primary caregivers’ health-related quality of life (HRQOL) and family functioning, and to identify potential factors associated with primary caregivers’ HRQOL and family functioning. Methods: The cross-sectional study involved a total of 159 primary caregivers of children with CP with a mean age of 42.8 ± 8.4 years. Demographic data and information on the physical and leisure activities of the primary caregivers were collected, and their quality of life (QOL) was measured based on the self-reported Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Results: Primary caregivers in the current study have shown good HRQOL and family functioning, with scores of 82.4 and 85.3 out of 100, respectively. Through multiple linear regression analyses, the mother’s level of education, family monthly income, sleeping problems in children with CP, and the existence of children with other types of disability have been identified as factors contributing to HRQOL and family functioning. Conclusions: The findings help set out the course for stakeholders to establish action to enhance the QOL of primary caregivers.

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Gender, Class and the Cost of Unpaid Care: An Analysis of 25 Countries

Background: This article examines the relationship between gender, class and unpaid care for children and elderly household members across twenty-five countries. Methods: Using the microdata files of the 2015–2017 Luxembourg Income Study, we demonstrate that household income quintile shapes the relationship between resident caregiving and a) women's diminished share of household income and b) the associated "wage penalty" women experience in paid employment, examining dual-headed heterosexual households and grouping countries at varying levels of GDP per capita. Results: Our analyses demonstrate that both eldercare and childcare have a negative impact on women's economic outcomes, yet the effects of both types of unpaid care vary across class. Overall, childcare has a larger impact for women in lower income households, while eldercare has a larger impact for women in higher income households. However, the wage penalties experienced by wealthier women due to either type of potential care responsibilities are considerably less than those experienced by women in poorer households. Conclusions: Together, these data suggest that unpaid resident caregiving has effects that are both highly gendered and highly classed, leading to intersectional disadvantages for women performing unpaid care within poorer households across countries, and with effects that, in some cases, are further amplified within low-GDP countries. 

 

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From Syringe to Spoon Feeding: A Case Report of How Occupational Therapy Treatment Successfully Guided the Parents of a Child with Autism Spectrum Disorder and Prematurity in an Outpatient Clinic

This case report details how occupational therapy treatment in an outpatient setting successfully guided the parents of a child with autism spectrum disorder and a history of prematurity from restrained syringe feedings to the acceptance of spoon feedings. Occupational therapy practitioners are qualified, needed and available to assess and treat feeding disorders in children with autism spectrum disorder and a history of prematurity. Family-centered practice must be utilized for successful outcomes in an outpatient service delivery model.

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Finding harmony within dissonance: Engaging patients, family/caregivers and service providers in research to fundamentally restructure relationships through integrative dynamics

Background: Deeply divided ideological positions challenge collaboration when engaging youth with mental disorders, caregivers and providers in mental health research. The integrative dynamics (ID) approach can restructure relationships and overcome 'us vs them' thinking. Objective: To assess the extent to which an experience‐based co‐design (EBCD) approach to patient and family engagement in mental health research aligned with ID processes. Methods: A retrospective case study of EBCD data in which transitional‐aged youth (n = 12), caregivers (n = 8) and providers (n = 10) co‐designed prototypes to improve transitions from child to adult services. Transcripts from focus groups and a co‐design event, co‐designed prototypes, the resulting model, evaluation interviews and author reflections were coded deductively based on core ID concepts, while allowing for emergent themes. Analysis was based on pattern matching. Triangulation across data sources, research team, and youth and caregiver reflections enhanced rigour. Findings: The EBCD focus group discussions of touchpoints in experiences aligned with ID processes of acknowledging the past, by revealing the perceived identity mythos of each group, and allowing expression of and working through emotional pain. These ID processes were briefly revisited in the co‐design event, where the focus was on the remaining ID processes: building cross‐cutting connections and reconfiguring relationships. The staged EBCD approach may facilitate ID, by working within one's own perspective prior to all perspectives working together in co‐design. Conclusion: Researchers can augment patient engagement approaches by applying ID principles with staged integration of groups to improve relations in mental health systems, and EBCD shows promise to operationalize this.

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Family rules, routines, and caregiver distress during the first year of pediatric cancer treatment

Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic. Caregivers completed validated questionnaires assessing demographic and child illness characteristics, psychosocial distress, and cancer‐related stressors, and participated in a semi‐structured interview about family rules and routines. Results: Caregivers reported changes in bedtime, mealtime, and school routines, relaxed behavioral expectations and rules around screen time, and new rules and routines around treatment, medications, and infection control. Caregivers with elevated levels of psychosocial distress reported more changed routines than caregivers with low levels of psychosocial distress. Caregivers who endorsed more cancer‐related stressors reported more new rules and routines than those who reported fewer cancer‐related stressors. Demographic and illness factors were not significantly associated with the number of changed, new, or stable family rules and routines. Conclusions: Families may relax rules and routines during the first several months of diagnosis, and this may be related to side effects of treatment and limited caregiver capacity. The long‐term impact of changes in family rules and routines during cancer treatment warrants further study given that accommodating parenting strategies have been associated with adverse short‐ and long‐term child health and behavior outcomes.

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Family knowledge about the legal rights of children and adolescents with cancer

Objective: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. Methods: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. Results: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. Conclusion: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.

 

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Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome

Background: Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Methods: Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Results: Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Conclusions: Individually tailored psychosocial support is needed.

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Family factors and health‐related quality of life within 6 months of completion of childhood cancer treatment

Objective: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment‐related variables, family factors (family functioning, caregiver health‐related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors. Methods: One hundred fifty‐four caregivers (of patients’ ages 0–18 years) and 52 youth (ages 7–18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within 6 months following treatment completion. Electronic health records were reviewed for cancer and treatment‐related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors. Results: Family factors were associated with self‐ and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self‐reported neurocognitive difficulties and HRQL were not supported. Conclusions: Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during the transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment.

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Family Caregiver Partnerships in Palliative Care Research Design and Implementation

The article discusses the effectiveness of family caregiver partnerships in the design and implementation of pediatric palliative care (PPC) research. Also cited are the importance of the perspectives of family caregivers, clinicians and researchers in improving research, and the principles of patient- and family-centered research like honesty, cultural competency, and transparency.

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Faith-sensitive end of life care for children, young people and their families

This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some of the most prevalent religions within the UK. This article is intended to give points for discussion and consideration, but health professionals are encouraged to speak to every patient and family on an individual level to ensure an understanding of their personal beliefs. Although there is a range of literature discussing faith during end-of-life care, there is litte that outlines the practical specifics and for this reason some of the supporting literature in this article is dated and, where possible, this has been supported with contemporary sources.

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Exploring opportunities for holistic family care of parental caregivers of children with life-threatening or life-limiting illnesses

Background: Life-threatening and life-limiting illnesses in children have profound implications for all family members, many of whom experience unmet health and support needs. Methods: Guided by literature on family-centered care and an Interpretive Description methodology, qualitative focus group interviews were conducted with 18 parental caregivers and health care and support providers to explore family experiences and identify care and support needs across the illness trajectory. Findings: Data analysis resulted in three themes related to parental participation in children's medical care, parental and familial psychological well-being, and social support needs. These inter-related themes reflect the complex nature of family life with childhood illness, highlighting families' holistic needs and how children's physical and psychological care is intertwined with the psychological and social well-being of the family system. Additionally, the findings revealed the significance of communication to parental caregivers' hope, coping, and well-being. Conclusions: The findings add depth to existing literature, and identify opportunities for addressing families' unmet needs, with specific attention to the role that social workers can play in facilitating family-centred care to promote effective support of parental caregivers. As such, the findings emphasize the important contributions that social workers can make within health care teams and in educational settings to optimize parents' ability to care for ill children while maintaining family functioning and well-being, and as advocates for social and policy change. 

 

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The Experience of Housing Needs Among Families Caring for Children With Medical Complexity

Background: Caregivers of children with medical complexity (CMC) face many stressors related to their child's medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. Methods: We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data. Results: Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child's illness and medical needs. In addition, parents indicated their child's illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver's housing preferences and possibilities. Conclusions: Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child's health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC. 

 

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Evaluation of depression symptoms among caregivers of children that take therapy in the national center for children rehabilitation and treatment during COVID-19 pandemic

Introduction: Raising a child with neurodevelopmental disorder is very challenging. Furthermore COVID-19 pandemic can increase stress levels especially among people that suffer from mental health disorders. On of the high risks group are children with neurodevelopmental disorders. Studies show that these difficult, challenging times have had a negative impact on most families, which have a child with neurodevelopmental disorders. Objectives: Evaluation of depression symptoms among caregivers of children that take therapy in the National Center for Children Rehabilitation and Treatment (NCCRT) during COVID-19 pandemic. Methods: The study was conducted during a two-month period March-April 2020. The sample involved 110 individuals, relatives, of children that were taking educative and rehabilitation therapy in NCCRT during last year, ambulatory or inpatients. Data were collected by clinical records and phone interviews with children’s caregiver. Instrument we used were: Demographic inventory and Hamilton Anxiety Rating Scale for anxiety symptom evaluation. All data were statistically analyzed through excel. Results: Most of individual interviewed, whom are responsible for children wellbeing were their parents, 69% of them. 56% of individuals were among 31-45 years old and 92% of them were women. Depression symptoms were slightly present. We noticed that depressive symptomatology was a bit worse in caregivers in urban areas compared with ones in rural areas. Conclusions: It is necessary supporting with special attention caregivers whom have depressive symptoms. Yet has to be evaluated the connection, if it’s present, between parents with depressive symptoms and children progress, for ones that are being supported with development therapy.

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Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part II: A qualitative analysis

Background: The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement. Objective: To explore and analyse the experiences of caregivers of youth with diverse mental health challenges and who participated in FC. Design: Semi‐structured interviews with thirteen FC‐participating caregivers of youth with mental health challenges. Results: Thematic analysis uncovered three major themes regarding caregivers' experience with FC: (a) FC increased the caregivers' ability to manage their youth's mental health challenges; (b) participating in FC impacted their intra‐ and interpersonal spheres; and (c) improvements to the program were proposed. Following participation in FC, caregivers felt they learned a new approach to understanding themselves, their youth and mental health, and were better able to manage their youth's mental health challenges. Discussion and conclusion: FC is a promising intervention for caregivers of youth with mental health challenges, beyond the traditional BPD focus. The intervention has the potential to provide broad‐based benefits for caregivers and should be considered for implementation and scale‐up across youth‐ and caregiver‐serving organizations. Potential areas of intervention flexibility and improvement are discussed. Patient/public contribution: Caregivers were involved in the program development and facilitation of FC. A person with lived experience was involved with the analysis.

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Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part I: A quantitative analysis

Introduction: Caregivers of youth with mental health (MH) challenges are often faced with complex problems in relation to caring for their youth. Family Connections™ (FC) is a 12‐week skills training program for families of individuals with MH challenges, developed originally for Borderline Personality Disorder. Research is needed to examine the effectiveness of FC for caregivers of youth with diverse MH challenges. Objective: To examine the effectiveness of FC for caregivers of youth with MH challenges. Methods: A total of 94 caregivers of youth with MH challenges participated in FC, across three sites in Ontario, Canada. Assessments occurred at baseline, 6 weeks, 12 weeks and follow‐up. Primary outcomes include the Burden Assessment Scale and The Stress Index for Parents of Adolescents. Secondary outcomes included the caregiver's report of child behaviour, affect, mastery, coping and grief. Linear mixed model analyses were conducted, where time and the time × site interaction were defined as the fixed effects. Results: Statistically significant improvements over time were observed across outcome measures, including caregiver burden, grief, coping, and other measures. The time × site interaction was only significant for burden (P = .005). Conclusion: This study demonstrates the effectiveness of FC for caregivers of youth with MH challenges. Future research should focus on differences across geographical sites and facilitation models. Patient or public contribution: Caregivers were involved in the facilitation of FC. A person with lived experience was involved in analysing the data, reporting the results, and drafting the manuscript.

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Evaluating strategies to manage and endure challenging behaviors in mucopolysaccharidoses

The mucopolysaccharidoses (MPS) are a group of rare, genetic, lysosomal storage disorders characterized by progressive, multisystemic accumulation of glycosaminoglycans. Individuals with severe MPS often present with significant neurological involvement and may exhibit challenging behaviors, including hyperactivity, aggression, and sleep disturbance. These behaviors can cause adverse outcomes and necessitate the development of specific measures to support affected families. Through an analysis of the results reported by Hoffmann et al. in their recent study, this letter outlines important factors that must be considered when evaluating the impact of challenging behaviors associated with MPS, including treatment history, age, sibling and family relationships, the feasibility of daily caregiving, and caregiver burden. These recommendations can help guide future studies to identify the most effective coping strategies to support families of people with MPS who have challenging behaviors.

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Enhancing Residents' Warmth in Greeting Caregivers: An Inpatient Intervention to Improve Family-Centered Communication

Background: Hospitals are increasingly motivated to improve the patient and family experience and increase patient satisfaction scores. The manner by which a provider greets patients and their families sets the tone for the hospital stay. This study aimed to improve residents' greetings of caregivers in the inpatient pediatric setting to improve family-centered communication. Methods: The study was conducted from October 2017 to April 2018 at a single, urban children's hospital on a unit with patients primarily, 5 years old. The intervention consisted of posting a prominent board outside of patients' rooms that (1) listed caregivers' preferred names (e.g., Mom/Dad, first names), (2) instructed residents to greet caregivers warmly by their preferred names, and (3) identified residents for families by name and photograph. During implementation, we conducted 5 Plan-Do-Study-Act cycles and surveyed 114 caregivers. Improvement was assessed using run charts. Results: The primary outcome was the percentage of caregivers who rated residents' warmth of greetings as "excellent." This measure increased from a baseline median of 62.5%-84.4% with$6 consecutive postintervention points above the baseline median. Conclusion: The intervention improved caregiver-perceived quality of residents' greetings and could serve as a model for other hospitals to enhance provider-family rapport and improve communication.

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Employment and well-being among caregivers of children with autism spectrum disorder

Methods: We used the 2016–2018 National Survey of Children’s Health to assess restricted work participation among caregivers of children with autism spectrum disorder (ASD) and special health care needs (SHCN). Results: Caregivers of children with ASD (N = 2,041) were especially likely to avoid changing jobs to keep health insurance coverage (20%; 95% CI: 16%, 24%), compared to either caregivers of children with other SHCN (N = 18,189) or children without SHCN (N = 68,499). Conclusion: Identifying effective strategies to mitigate the effects of a child’s ASD diagnosis on parents’ withdrawal from the workforce would add an important piece to comprehensive, family-centered care for this at-risk population.

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Effects of an attachment-based parent intervention on mothers of children with autism spectrum disorder: preliminary findings from a non-randomized controlled trial

Background: Caregivers of children with autism spectrum disorders (ASD) often experience difficulties in responding appropriately to the needs of those children, who typically express attachment in distinct and nonconventional ways. This highlights the need for an attachment-based approach targeted at caregivers of children with ASD. Circle of Security Parenting (COSP), an attachment-based parenting program, is designed to increase caregivers’ sensitivity to children’s attachment needs. The aim of this study was to provide verification of the effectiveness of COSP in mothers of children with ASD. Methods: This study was a non-randomized controlled trial. Sixty mothers of children with ASD aged 4–12 were recruited. Twenty mothers received the COSP intervention, while 40 did not. The characteristics of children in the control group were matched with those of the intervention group. To evaluate the outcomes of the intervention, changes in parental self-efficacy and mental health were assessed using the Tool to Measure Parenting Self-Efficacy (TOPSE) and the General Health Questionnaire-30 (GHQ-30). The children’s improvement in emotional and behavioral problems was assessed from the mothers’ perspective using the Child Behavior Checklist (CBCL). Both groups completed the assessments in parallel. Evaluations were compared between baseline (T1) and 6-month follow-up (T2). Results: Scores for self-efficacy and mental health of mothers and behavior of children were significantly improved from T1 to T2 in the intervention group, but not in the control group. Participants’ mental health was markedly worsened in the control group. Conclusion: This study demonstrated that the COSP program for mothers of children with ASD improved their parental self-efficacy and mental health, and reduced their subjective sense of difficulties related to their children’s behaviors. Our findings support the effectiveness of the attachment-based program for mothers of children with ASD, providing the groundwork for further studies of the attachment-based intervention for children with ASD and their families. Future studies with larger samples and randomization are also needed for direct evaluation of the improvement of children's attachment security, and for exploration of the synergistic relationship between various family support strategies and COSP. Trial Registration: This trial was registered with the University Hospital Medical Information Network Clinical Trial Registry (No. UMIN000039574)

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The Effect of Language Barriers at Discharge on Pediatric Adenotonsillectomy Outcomes and Healthcare Contact

Objective: Effective delivery of discharge instructions and access to postoperative care play a critical role in outcomes after pediatric surgery. Previous studies in the pediatric emergency department suggest that caregivers with language barriers have less comprehension of discharge instructions despite use of interpretation services. However, the impact of language barriers during discharge on surgical outcomes in a pediatric surgical setting has not been studied. This study examined the effect of parental language during discharge on number and mode of healthcare contact following pediatric adenotonsillectomy. Methods: A retrospective cohort study was conducted on children who underwent adenotonsillectomy at a tertiary care pediatric academic medical center from July 1, 2016 to June 1, 2018. Data were collected on consecutive patients with non-English-speaking caregivers and a systematic sampling of patients with English-speaking caregiver. Surgery-related complications and healthcare contacts within 90 days after discharge were collected. Two-tailed t tests, χ2 tests, and logistic regression were performed to assess the association between parental primary language and incidence of healthcare contact after surgery. Results: A total of 136 patients were included: 85 English-speaking and 51 non-English-speaking. The groups were comparable in age, sex, and comorbidities. The non-English group had more patients with public insurance (86% vs. 56%; P <.001). Number of encounters and types of complications following discharge were similar, but the non-English group was more likely to utilize the emergency department compared to phone calls (OR, 9.3; 95% CI, 2.3-38.2), even after adjustment for insurance type (OR, 7.9; 95% CI, 1.6-39.4). Conclusion: Language barriers at discharge following pediatric otolaryngology surgery is associated with a meaningful difference in how patients utilized medical care. Interventions to improve comprehension and access may help reduce preventable emergency department visits and healthcare costs.

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Dravet Syndrome—The Polish Family’s Perspective Study

Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects. The caregivers also completed the PedsQL survey, which showed the most important problems. The survey received 55 responses from caregivers of patients with DS (aged 2–25 years). Results: Prior to the diagnosis of DS, 85% of patients presented with status epilepticus lasting more than 30 min, and the frequency of seizures (mostly tonic-clonic or hemiconvulsions) ranged from 2 per week to hundreds per day. After the diagnosis of DS, patients remained on polytherapy (drugs recommended in DS). Before diagnosis, some of them had been on sodium channel blockers. Most patients experienced many adverse effects, including aggression and loss of appetite. The frequency of adverse effects was related to the number of drugs used in this therapy, which had an impact on the results of the PedsQL form, particularly in terms of the physical and social spheres. Intensive care unit stays due to severe status epilepticus also had an influence on the results of the PedsQL form. Conclusions: Families must be counseled on non-pharmacologic strategies to reduce seizure risk, including avoidance of triggers that commonly induce seizures (including hyperthermia, flashing lights and patterns, sleep abnormalities). In addition to addressing seizures, holistic care for a patient with Dravet syndrome must involve a multidisciplinary team that includes specialists in physical, occupational and speech therapy, neuropsychology, social work.

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Do informal caregivers experience more burnout? A meta-analytic study

Background: Informal caregivers often report exhaustion when providing care, which can be related to forms of burnout. Yet, there is no systematic inventory of studies comparing caregivers and non-caregivers in terms of burnout. Methods: For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Findings: Two categories of studies were found: those on family care burnout (spousal or parental burnout) and those on professional burnout (mostly in healthcare). For family care burnout studies, informal caregivers reported more emotional exhaustion, and, to a lesser extent, depersonalization and reduced personal accomplishment than non-caregivers. For studies on professional burnout, workers providing informal care also reported more emotional exhaustion than workers not providing such a care. Conclusion: Overall, the results indicate that providing informal care represents a risk for role burnout. In family care burnout studies, these results confirm the assumption that providing informal care adds extra weight on the individuals’ shoulders. In professional burnout, these results support the role accumulation theory, pointing that an additional weight in one’s role, i.e., providing informal care, has an impact on another role, work. This work emphasizes the consideration of the multifaceted impact that the caregiving role can have on the individual. 

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Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease

Objectives: This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. Methods: A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Results: Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. Conclusions: The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis. 

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Diabetes‐by‐Proxy: Virtual Embodiment of Disease by Oklahoma Choctaw Parents of Children with Type 1 Diabetes

Background: Childhood type 1 diabetes is increasing globally and requires meticulous at‐home care due to risks for fatal outcomes if glucose levels are not continuously and correctly monitored. Type 1 diabetes research has focused on metabolism and stress measurements confirming high parental worry levels. However, research on caregivers’ management strategies has lagged. Methods: We show parents’ intense, all‐encompassing work to preempt a disastrous drop in their child's glucose as a stress‐path to the virtual embodiment of their child's condition. That is, parents acquire diabetes‐by‐proxy. Our findings derive from four and half years of ethnographic research with the same 19 families in the Choctaw Nation of Oklahoma. Findings: These parents were exceptionally engaged as caregivers and distressed by the potentially fatal outcome of type 1 diabetes mismanagement. Conclusions: Diabetes‐by‐proxy names the parents’ experience and validates clinical attention to them as they cope with their crucial caregiving commitment.

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Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairments—A multicenter prospective study

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

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Development and psychometric testing of a family concordance competency scale for families with children having chronic illnesses

Aim: This study aimed to develop a Family Concordance Competency Scale for Family System Units (FCCS-Fa) for families with children having chronic disease, and to evaluate its reliability and validity. Methods: FCCS-Fa was developed by taking the following steps: (a) drafting based on the elements comprising concordance between healthcare professionals and families with patients suffering from chronic illness; (b) evaluation of face and content validity by an expert panel; and (c) re-examination of face and content validity by semi-structured interviews with 16 families. Criterionrelated validity was evaluated using the existing scale and construct validity was evaluated using exploratory factor analysis. Analysis of each FCCS-Fa evaluation item, internal consistency, and the 2-week test-retest reliability was also conducted. An anonymous self-reported questionnaire survey was conducted, targeting families with chronically ill children who were outpatients at three hospitals. Results: A total of 196 subjects were analyzed. As results of FCCS-Fa item analysis and exploratory factor analysis, a scale structure comprised of 17 evaluation items and three factors were adopted. In addition, a significant correlation with several existing scales was identified and the criterionrelated validity was also confirmed. The Cronbach's α coefficient for the overall scale was .927, the intraclass correlation coefficient applying the retest method was .905, and internal consistency and test-retest reliability were both confirmed. Conclusions: We developed FCCS-Fa with reliability and validity. Assessing family concordance competency using this scale and supporting families to achieve family concordance can lead to self-management by families.

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Development and initial validation of the diabetes family conflict scale (revised)‐short form in a racially and income diverse sample

Objective: The purpose of the study was to develop a short form of the revised diabetes family conflict scale (DFCS) in a racially and income diverse sample while retaining strong psychometric properties. Methods: One seventy nine youth with type 1 diabetes (ages 12–18 years) and caregivers completed the DFCS‐Revised as well as assessments of adherence, psychosocial functioning, and diabetes‐related stress. Hemoglobin A1c was also obtained. The sample was split at random into a development sample and validation sample. Results: Confirmatory factor analyses in the validation sample supported the use of a six‐item short form (DFCS‐SF) either as a total score (6‐items) or a direct (3‐item) and indirect (3‐item) score. Variations of the DFCS‐SF (three items of the 6‐item short form) also had acceptable model fit. The short‐form questionnaires had acceptable internal consistency and convergent validity (6‐item: Cronbach's a = 0.865, full scale DFCS r = 0.954; 3‐item: Cronbach's a = 0.757, full scale DFCS r = 0.912). The DFCS‐SF showed measurement invariance across both youth and caregiver respondents. Greater report of the DFCS‐SF by both youth and caregivers was significantly associated with higher HbA1c, more diabetes‐related stress, and more psychosocial concerns. Conclusions: The DFCS‐SF developed in the present study shows psychometric integrity in a diverse population of youth and can be utilized by providers to rapidly assess and potentially implement interventions to reduce diabetes family conflict, a psychosocial concern which is associated with elevated HbA1c, non‐optimal adherence, diabetes‐related stress, and psychological distress.

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Developing person‐centred care competencies for the healthcare workforce to support family caregivers: Caregiver centred care

Background: Family caregivers (FCGs) are an integral part of the healthcare system. Currently, FCGs provide 70%–90% of the care required by community‐dwelling children and adults living with complex chronic conditions and frailty. Despite FCG's contributions and the growing proportion of distressed caregivers, support for FCGs has not been a health system priority. Researchers have proposed training to enhance the competencies of health providers to work effectively with FCGs. In the absence of best practices for the competency indicators for caregiver‐centred care, we have developed a competency framework for training the health workforce to support FCGs. Objectives: The objectives in this paper are fourfold: (a) a brief review of stakeholder engagement that led to the development of the competencies the health workforce needs to support FCGs, (b) a description of the process used to name the competency domains, (c) a report on the Modified Delphi process (conducted 2019) used to validate the domain indicators, and (d) a description of the competency framework. Methods: We adopted a caregiver and a multilevel interdisciplinary stakeholder codesign approach throughout the competency development process. The competency domains include: (a) Recognising the Caregiver Role, (b) Communicating with FCGs, (c) Partnering with FCGs, (d) Fostering Resilience in FCGs, (e) Navigating Health and Social Systems and Accessing Resources, and, (f) Enhancing the Culture and Context of Healthcare. Our Caregiver‐Centred Care Competencies for the health workforce are only a first step in supporting FCGs in their vital roles. Conclusions: There are few education and training resources to enable and empower health providers to support FCGs, there is an urgent need to develop training resources for the health workforce to recognise and support FCGs.

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Determinants of Time to Care for Children and Adolescents With Disabilities

Background: Time use studies uncover the organization of daily routine of families of children with disabilities. The objective of this study is to identify determinants of time spent caring for children/adolescents with cerebral palsy (CP), autism spectrum disorder (ASD), and typical development (TD). Methods: Participants were caregivers of children/adolescents with/without disability. Structural equation modeling tested a proposed model of time spent in child care. The variables in the model were as follows: questionnaire (families' socioeconomic status [SES]), children's functioning (The Pediatric Evaluation of Disability Inventory–Computer Adaptive Test [PEDI-CAT]); hours of care (daily diaries), number of adaptations used, and help with child care (parents' report). Distinct variable combinations explained 78% of the variation in the time to care (TD model), followed by 42% (ASD) and 29% (CP). Results: Adaptations indirectly affected time to care through its effect on functioning (CP); family's SES affected functioning through its effect on adaptation use (ASD). Conclusion: In conclusion, knowledge of factors affecting caregivers' time spent on children's care help occupational therapists implement family-centered strategies.

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A delicate balance between control and flexibility: Experiences of care and support among pre‐teenage children with type 1 diabetes and their families

Background: For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre‐teens (9‐12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre‐teens with type 1 diabetes and their families. Methods: Data were obtained from four interactive workshops with pre‐teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Findings: Data analysis resulted in three themes: 1, diabetes takes up 'a lot of space', 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. Conclusions: The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.

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COVID-19 and UK family carers: policy implications

Background: Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. Methods: In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. Discussion: We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. Conclusion: We provide policy recommendations with the aim of improving outcomes for all carers. 

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Counseling Parents at the Time of Diagnosis: Moving Toward Client-Centered Practice

Purpose: The purpose of this article is to present a clientcentered model of counseling that integrates information and personal adjustment counseling. Research has indicated that audiologists are more comfortable with counseling that is information based than with personal adjustment counseling. The prevailing model of diagnosis appears to be the medical model in which, first, a case history is taken, then testing and, finally, counseling. This model lends itself to audiologist as expert and the counseling as a separate entity based on information and advice. Further research has indicated parents retain little of the information provided in the initial examination because of their heightened emotions. Method: This article presents a client-centered model of diagnosis in which information is provided within an emotionally safe context, enabling the parents to express their feelings and have the ability to control the flow of information. The ultimate purpose of a client-centered model is to empower parents by making them active participants in the diagnostic process rather than passive recipients. Conclusion: The client-centered model has wide implications for the diagnostic process as well as for the training of students.

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A comparison study: caregiver functioning and family resilience among families of children with cystic fibrosis, asthma, and healthy controls

Background: Caregivers of children with cystic fibrosis (CF) are at risk for psychosocial difficulties, which has been related to poorer child well-being and medical adherence. Methods: The present study utilized the National Survey of Children's Health (NSCH) to examine self-reported differences in caregiver functioning among a matched sample of caregivers of youth with CF, asthma, and healthy controls (N = 114). Results: CF caregivers reported poorer mental health and more parenting aggravation. Among CF caregivers, poorer caregiver mental health predicted less family resilience, which in turn, predicted more parenting aggravation. Conclusions: Findings have implications for prevention screening and brief interventions within pulmonary medicine.

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Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents

Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations. Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT. Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended. Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.

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A Communication Model to Bridge Adolescent Patients, Caregivers, and Physicians in Transitions of Care

Background: A transition of care (TOC) process from pediatric to adult medicine ensures that adolescents receive ongoing care into young adulthood, a time of high risk for preventable morbidity and mortality. Methods: We explored patient, caregiver, and physician perspectives on ways to improve TOC communication with healthy adolescents. Two researchers conducted key informant interviews with healthy 12- to 18-year-old adolescents, their caregivers, and primary care physicians working in pediatric, internal, and family medicine. Data saturation was reached after interviewing 12 adolescents, 10 caregivers, and 36 physicians. Findings: Three themes were identified: perceptions of TOC; effective communication among the triad of adolescents, caregivers, and providers; and early communication about TOC preparation. From these themes, a model of communication was identified and adapted, outlining the communication skills and responsibilities for physicians and patients during TOC. Conclusions: Physicians must understand how to use strong, consistent, adolescent-centered communication to execute effective TOC.

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Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support

Background: In Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists. Objective: The aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial. Methods: A pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the sample characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant. Results: The study was approved by The Royal Children’s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021. Conclusions: Study findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12620000164998; International Registered Report Identifier (IRRID): DERR1-10.2196/20011

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Clinging to My Child: Mothers' Experiences Taking Care of a Child Hospitalized with Leukemia

Aims: The purpose of this study was to investigate, within the sociocultural context of Korea, mothers' experiences caring for their child being treated in a hospital for leukemia. Method: Study participants included 11 mothers who visited a hospital for their child's follow-up care after treatment for leukemia. The researchers investigated the mothers' experiences in caring for their children using a qualitative study design. Through interviews, the researchers identified five categories of experiences among participants, including, "Death anxiety," "Feeling guilty," "Fulfilling responsibilities as a mom," "Feeling overwhelmed by life," and "Feeling grateful." Findings: In the course of treatment, mothers tended to feel pressured to be a good mother, and sometimes felt overwhelmed by life. Conclusions: Healthcare providers need to grasp the difficulties faced by mothers taking care of their children hospitalized for treatment of leukemia, and must develop programs to reduce the burden on mothers and increase their families' functioning.

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Chinese Parents' Understanding of Autism Spectrum Disorder

Background: This study investigated family perceptions of Autism Spectrum Disorder (ASD) in China. Design: A survey with open-ended questions assessing knowledge of ASD and its causes was distributed via nine ASD organisations across five different cities in Southern China. Results: Results were analysed from a total of 104 Chinese caregivers who reported on their children or grandchildren with an ASD diagnosis. The results suggested that a large proportion of these families had limited understanding of ASD. A number of misconceptions were also evident within the sample. A tendency to blame themselves for their child's condition may have been further exacerbated by cultural expectations of the parental role. Discussion: The implications of these findings in addressing misconceptions about ASD in China are discussed.

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Children With Special Health Care Needs and Forgone Family Employment

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050). FFE was defined as any family member having stopped work and/or reduced hours because of their child's health or health condition. Child, caregiver, and household characteristics were compared by FFE status. Logistic regression analysis was conducted to evaluate the association between hours of medical care provide by a family member and FFE. US Bureau of Labor Statistics reports were used to estimate lost earnings from FFE. RESULTS: FFE occurred in 14.5% (95% confidence interval [CI] 12.9%-16.1%) of previously employed families with CSHCN and was 40.9% (95% CI 27.1%-54.7%) for children with an intellectual disability. We observed disproportionately high FFE among CSHCN who were 0 to 5 years old and of Hispanic ethnicity. We found a strong association between FFE and increasing hours of family-provided medical care, with an adjusted odds ratio (aOR) of 1.72 (95% CI 1.25-2.36) for <1 hour per week (compared with 0 hours), an aOR of 5.96 (95% CI 4.30-8.27) for 1 to 4 hours per week, an aOR of 11.89 (95% CI 6.19-22.81) for 5 to 10 hours per week, and an aOR of 8.89 (95% CI 5.26-15.01) for >10 hours per week. Lost earnings for each household with FFE were estimated at _$18 000 per year. CONCLUSIONS: With our findings, we highlight the need to implement programs and policies that address forgone income experienced by families of CSHCN.

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Challenges Facing Family Caregivers of Children With Disabilities During COVID-19 Pandemic in Palestine

Background: COVID-19 has caused great changes in all aspects of life which affected all people especially vulnerable groups such as children with disabilities (CWD) and their families. Objective: This study aimed to examine the challenges facing caregivers of CWD during the pandemic, and to explore these challenges from various physical, social, psychological, and financial aspects. Methods: A cross-sectional design was conducted in Palestine, a total of 130 caregivers of CWD completed a survey consisting of demographic and clinical characteristics questionnaire and the short version of the burden scale for family caregivers (BSFC-s) between March and May 2021. Results: Most of the caregivers were mothers (76.9%), the mean age of the children was (6.09 ± 3.43 years). The majority (88.5%) of the caregivers felt physically exhausted, about (75.4%) had decreased living standards, and (86.2%) indicated that caregiving is taking their strength. A high burden score was recorded, the mean BSFC-s score was 20.17 ± 5.57. Significant differences in BSFC-s scores were recorded based on the type of disability, and child’s ability to take care of oneself, P <.05. The total scores of the BSFC-s were positively correlated with the physical, social, psychological, and financial challenges facing the caregivers (P <.001). Conclusions: COVID-19 has caused increased burdens on the caregivers of CWD and a negative impact on the child’s mobility accompanying a lack of access to health and rehabilitation services. Vital factors are to be considered in developing strategic health and rehabilitative plans for promoting better care for caregivers and their CWD during lockdown restrictions time. 

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Central Vascular Access Device Complications in Pediatric Home Care Patients Managed by Family Caregivers or Nurses

Background: There is a paucity of data regarding complications and outcomes of central vascular access devices (CVADs) in pediatric home care patients. Unlike hospital and clinic settings, home care patients commonly receive catheter care and accesses by family caregivers rather than nurses. Design: This 2-year prospective study compared complications and outcomes of 222 CVADs managed by nurses or family caregivers. CVADs were followed for skin complications at insertion site, catheter complications, central line-associated bloodstream infection occurrences, and the outcome of dysfunctional catheters treated with alteplase. Results: Results showed no differences in any CVAD complications, whether access and care were primarily performed by trained family caregivers or nurses.

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Caring for a child with Epidermolysis Bullosa: a scoping review on the family impacts and support needs

Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity. Methods: We conducted a scoping review comprising 11 studies (2005-2021) to examine the research literature related to the support needs of parents with a child with EB, and the impact on family unit wellbeing. Results: Most common needs identified were emotional needs, followed by practical needs, social needs and physical needs. Many parents also reported a lack of informational and psychological support. Common findings included emotional stress, lack of respite and physical strain on caring responsibility, financial stress, guilt and impact on relationships and family unit. Conclusions: Few studies exist that explore the support needs of parents of a child with EB. More attention should be paid to the support needs of parents to provide adequate care to those diagnosed with EB as well as their families.

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Caregivers’ Nutrition Knowledge and Dietary Intake of Type 1 Diabetic Children Aged 3–14 Years in Uganda

Purpose: This study aimed to assess the association between caregiver’s level of type 1 diabetes (T1D) nutrition knowledge with children’s dietary diversity score (DDS), mean intake of macronutrients, nutrient adequacy ratios (NARs) and mean adequacy ratio (MAR). Research Design and Methods: A cross-sectional analytical study design was used. The study was conducted at 6 diabetes clinics in Uganda among 59 caregivers and 61 children. T1D nutrition knowledge survey (NKS) was used to assess the caregiver’s nutrition knowledge, and the 24-hour dietary recall and dietary diversity score (DDS) questionnaires were used to collect data on the child’s dietary intake. Results: Majority (93.2%) of the caregivers had low T1D nutrition knowledge. Carbohydrate counting was the least performed nutrition knowledge domain. The children’s mean DDS, calorie intake and MAR were 5.7 ± 1.6, 666.7 ± 639.8 kcal and 0.7 ± 0.3, respectively. The mean NARs of carbohydrate, protein, and fat were 0.9 ± 0.3, 0.9 ± 0.4, 0.5 ± 0.5, respectively. There was a significant association between DDS with NARs of carbohydrate, protein, fat, vitamins A, B2, B3, B5, B12, folic acid, zinc and MAR. No formal education was significantly associated with a lower mean NKS score among caregivers (p = 0.039). Caregivers’ T1D nutrition knowledge, age and family size explained 14% of variation in the child’s dietary diversity (p = 0.041). Conclusion: Despite poor nutrition knowledge among caregivers especially on carbohydrate counting, dietary diversity among children with T1D remained favorable. Excess carbohydrate intake was observed with inadequate intake of proteins, fats and micronutrients (vitamin A, B vitamins and calcium). Caregivers with low education were more likely to register poor nutrition knowledge; therefore, there is need to develop and tailor nutrition education programmes to enhance comprehensive learning among caregivers for improved outcomes.

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Caregivers’ Burden of School-Aged Children with Neurodevelopmental Disorders: Implications for Family-Centred Care

Background: Caregivers of children with neurodevelopmental disorders play a central role during the rehabilitation and education processes, but they have an increasing risk of psychosocial problems even if the literature is not so agreed upon the specific and predisposing factors to that. The aim of this study was to examine possibly differences of burden levels in an Italian sample of principal caregivers of children with different kinds of neurodevelopmental disorders and to investigate the possible links between some clinical and sociodemographic variables and the levels of caregiver’s burden. Methods: 105 caregivers of school-aged children with neurodevelopmental disorders were included in the study and completed three online questionnaires (General Questionnaire, Caregiver Burden Inventory, Zarit Caregiver Burden Scale). Results: Results highlighted that about the half of caregivers show from moderate to high levels of stress, but parents of children with Autism Spectrum Disorder and Intellectual Disability show greater difficulties than parents of children with Attention-Deficit Hyperactivity Disorder, Language and/or Learning Disorder, and Developmental Coordination Disorder. Moreover, it was evident a negative correlation between the burden levels and the age of children, but also a direct correlation between the burden levels and the weekly hours of rehabilitation. Conclusions: These findings show that severity of caregiver’s burden is dependent by the type of neurodevelopmental disorder and suggest that an ecological and family-centred approach is necessary to guarantee the life health developmental course of these children.

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Caregiver's difficulty paying child's healthcare bills and bullying victimization of adolescents with physical disabilities

Objective: Guided by the ecological systems perspective, the objective of the study was to examine whether caregivers' difficulty paying their child's health‐care bills is associated with bullying victimization directly and indirectly through the mediating mechanisms of caregivers' frustration, adolescents' internalizing problems, and social difficulty focusing on adolescents with physical disabilities. Design: The 2019 National Survey of Children's Health dataset, which collected data on adolescents' and caregivers' demographic characteristics and health and well‐being, was used. The study sample consisted of 368 caregivers of adolescents, 12–17 years of age with physical disabilities. Results: No direct association between caregivers' difficulty paying their child's health‐care bills and bullying victimization was found. However, caregivers' frustration and adolescents' internalizing problems were shown to have an indirect association with bullying victimization, which was mediated by difficulty making friends. In addition, adolescents' difficulty making friends was positively associated with bullying victimization. Conclusions: Practitioners working with adolescents with physical disabilities are encouraged to foster collaborative processes across various ecological systems of the adolescent and family to address caregivers' frustration and promote positive social and emotional development of the adolescent with physical disabilities, which can decrease their risk of bullying victimization.

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Caregiver Social Status and Health-Related Quality of Life in Neurologically Impaired Children on Home Enteral Nutrition

Background: We aimed to investigate the association between caregiver social status and health-related quality of life (HRQoL) in children with neurological impairment (NI) on home enteral nutrition (HEN). Methods: This was an ancillary study of a multicenter, cross-sectional study which explored HRQoL in 75 NI children on HEN. All the caregivers from the original cohort were contacted, and data on education level, occupation and marital status were collected. The association between social status and HRQoL was investigated using a multiple Poisson Generalized Linear Model. In total, 93 caregivers were included, responsible for the care of 71 children. The caregivers of four children of the original cohort did not answer the questionnaire. Results: Mothers with high-level education presented lower HRQoL in comparison to mothers with low-level (β: −5.97; 95% CI −11.51, −0.10; p = 0.027) or medium-level education (β: 4.85; 95% CI −9.87, 0.53; p = 0.044). The analysis of the subgroup of cases in which the main caregiver was represented by both parents gave similar findings, with education level of the father being negatively correlated with HRQoL. Conclusions: Our data showed that higher education level may negatively affect quality of life of caregivers of NI children. This could be helpful in identifying at-risk families and addressing supportive efforts.

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Caregiver engagement in youth partial hospitalization treatment

Background: Although the importance of caregiver engagement in a child's psychological treatment is well established within outpatient treatment settings, the question remains whether these findings can be generalized to more intensive treatment settings where caregiver engagement may be more challenging to facilitate. Design: A correlational, multi-informant design was used to collect data by caregiver self-report and therapist-report from a sample of 64 caregivers of youth referred for partial hospitalization. Results: Results show that caregivers' attitudinal self-assessment of engagement was not significantly related to their self-report of behavioral engagement (e.g. number of family sessions attended) or therapists' report of caregiver engagement. After controlling for caregiver expectations and therapist ratings of caregiver engagement, only caregiver ratings of attendance at family sessions marginally predicted treatment outcomes, but in the negative direction. Implications for adapting measures of caregiver engagement to intensive treatment settings and its impact on treatment outcomes are discussed.

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Caregiver burden, work-family conflict, family-work conflict, and mental health of caregivers: A mediational longitudinal study

Background: Caregivers are responsible for the care of another, such as a young adult, disabled child, elderly parent, or sick spouse. Individuals who have caregiving responsibilities must blend the often-contradictory behavioural expectations from the different roles in which they reside. Methods: Building on the theoretical foundations of Conservation of Resources theory, this study tests a mediational model explicating the process through which caregiver burden impacts mental health through work-family conflict among a community sample of 1,007 unpaid caregivers in the greater Chicago area who responded to a mail survey at three time points. Results: Structural equation modelling analyses indicate strain-based conflict as being a consistent mediator between caregiver burden and mental health at baseline and two years later. These findings can inform practice and policy for workers with caregiving responsibilities.

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Caregiver burden, psychological distress and hopelessness among carers of thalassemia patients

Objective: To assess the relationship between care giver burden, hopelessness and Psychological distress. To explore the impact of care giver burden on Psychological distress and mediating role of hopelessness among carers of Thalassemia patients. Study Design: Descriptive cross-sectional study. Place and Duration of Study: At the Thalassemia center of The Children’s Hospital &amp; the Institute of Child Health Multan, Pakistan, in seven month from 17th November 2018 to 26th March 2019. Material and Methods: Two hundred and forty (240, 48.3% males and 51.6% female) carers of Thalassemia patients were assessed on Burden Scale for Family Caregivers (BSFC), Kessler Psychological Distress Scale (K10) and Beck Hopelessness Scale (BHS). Results: Findings showed that caregiver burden was positively correlated with psychological distress (p&lt;0.01) and hopelessness (p&lt;0.01). Results also revealed that caregiver burden significantly positively predicted hopelessness (p&lt;0.00) and hopelessness mediated the relationship between care giver burden and psychological distress (p&lt;0.00). Outcomes also illustrated that there were differences on care giver burden (p&lt;0.01), Psychological distress (p&lt;0.00) and hopelessness (p&lt;0.00) among carers of patients with thalassemia disorders on the ground of carer’s gender. Conclusion: Care giver burden, Psychological distress and Hopelessness are interlinked phenomenon, while male have more hopelessness and female have more care giver burden and psychological distress. 

Caregiver burden versus intensity of anxiety and depression symptoms in parents of children with cerebral palsy as well as factors potentially differentiating the level of burden: a cross-sectional study (Poland)

Objectives: To assess the relationship between caregiver burden and severity of symptoms of anxiety/depression in parents of children with cerebral palsy (CP), and to identify factors differentiating the level of caregiver burden. Setting: Regional rehabilitation centres in South-Eastern Poland.ParticipantsThe study involved 190 parents of children with CP, that is, 138 women and 52 men. Primary and secondary outcome measures: Caregiver burden was assessed using Caregiver Burden Scale (CBS), while the intensity of anxiety and depression symptoms was measured using Hospital Anxiety and Depression Scale (HADS). Potential predictors were examined using Gross Motor Function Classification System for Cerebral Palsy (GMFCS), Barthel Index (BI) as well as a questionnaire focusing on the characteristics of the child, the parent and the family. The analyses applied Pearson’s linear correlation coefficient as well as multiple regression analysis. Results: All the CBS measures are significantly correlated to HADS-A (anxiety) and HADS-D (depression). Intensity of anxiety is most visibly linked to CBS measures of disappointment and environment (p<0.0001), while severity of depression is related to emotional involvement and general strain (p<0.0001). The factors differentiating caregiver burden measure in the subscales of general strain (p<0.0001) and social isolation (p<0.0001) include the child’s age and BI, and the parent’s health status; in the subscale of disappointment (p<0.0001)—the child’s age, BI, GMFCS, as well as the parent’s age and health status; in the subscale of emotional involvement (p=0.0007)—BI, and the parent’s health status; in the subscale of environment (p=0.0002)—the child’s age and BI. Conclusions: There is a positive linear relationship between the caregiver burden measures and severity of anxiety and depression. Effort should be made to relieve caregiver burden in parents of children with CP.

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Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

Objective: To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech. Design: A cross-sectional survey. Setting: Data were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony. Participants: n=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained. Main outcome measures: Caregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0). Results: The analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460). Conclusions: Caregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.

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Impact of severe polyhandicap cared for at home on French informal caregivers' burden: a cross-sectional study

Objectives Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. Design Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). Settings PLH children were recruited from a specialised paediatric/neurological department. Participants The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. Outcomes measures From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psycho-behavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). Results Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55 +/- 20 to 81 +/- 12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. Conclusions Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions.

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Care Burden and Coping Strategies among Caregivers of Paediatric HIV/AIDS in Northern Uganda: A Cross-Sectional Mixed-Method Study

Background: Family caregivers provide the bulk of care to children living with HIV. This places an enormous demand and care burden on the caregivers who often struggle to cope in various ways, some of which may be maladaptive. This may adversely affect their quality of care. Very little literature exists in resource-limited contexts on the burden of care experienced by caregivers on whom children living with HIV/AIDS depend for their long-term care. We assessed care burden and coping strategies among the caregivers of paediatric HIV/AIDS patients in Lira district, northern Uganda. Methods: A mixed-method cross-sectional study was conducted among 113 caregivers of paediatric HIV patients attending the ART clinic at a tertiary healthcare facility in Lira district, northern Uganda. A consecutive sampling method was used to select participants for the quantitative study, while 15 respondents were purposively sampled for the qualitative data. Quantitative data were collected using standard interviewer-administered questionnaires, while in-depth interview guides were used to collect qualitative data. Data were entered, cleaned, and analysed using SPSS version 23. Qualitative data were analysed thematically. Results: The majority of the caregivers, 65.5% (74), experienced mild-to-moderate burden. The mean burden scores significantly differed by caregivers’ age (P=0.017), marital status (P=0.017), average monthly income (P=0.035), and child’s school attendance (P=0.039). Accepting social support, seeking spiritual support, and reframing were the three most commonly used strategies for coping. Marital status and occupation were, respectively, positively and negatively correlated with information-seeking as a coping strategy, while monthly income was positively correlated with psychosocial support as a strategy. Seeking community support was negatively correlated with the duration of the child’s care. Conclusions: Our findings show that care burden is a common problem among the caregivers of children living with HIV in the study context.

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Burdens on caregivers of children ages one to sixteen years living with sickle cell disease attending a specialised clinic in urban, Jamaica

Background: Sickle cell disease (SCD) requires continuous familycentred management due to its chronicity and severity. Affected children depend greatly on their caregivers for assistance. SCD is the fourth leading cause of hospitalisation in children in Jamaica, with an incidence rate of 1:150 births. This strong dependence, frequent hospitalisation, medical visits and along with the unpredictable nature of the disease may cause financial strain and caregiver burden. This study seeks to determine the level of caregiver burden experienced by caregivers of children living with sickle cell disease attending a clinic in urban Jamaica. Design: A cross-sectional study was conducted among 180 caregivers of children ages 1 to 16 years living with SCD, attending a specialised sickle cell clinic. Data were collected using the Zarit Burden Interview (ZBI) Version 1.0. Descriptive statistics were utilised to summarise data. Results: The majority (79%) of respondents were females between the ages of 20 and 49 years old. Majority (76%) were employed, with 13% earning less than $10,000 which is below minimum wage. 48% of caregivers reported that they rarely or never experienced burden of care with their children. The ZBI overall burden score was M = 27.2, which indicate mild -- moderate burden. The highest burden was future expectations for child (41%). Majority (73%) indicated they often did not have enough money to care for the child. Conclusion: In this study, caregivers are younger and experienced burden mild to moderate; factors such as stable income and family support helped to reduce burden.

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Burden on family caregivers of children and adolescent in immediate post hematopoietic stem cell transplantation

Objective: To evaluate the burden on family caregivers of children and adolescents in immediate post hematopoietic stem cell transplantation. Method: Study of quantitative nature, of analytical and traverse type, accomplished in two institutions of health with 31 caregivers of children and adolescents in immediate post transplantation. The data collection was accomplished between October of 2018 and June of 2019. The caregivers' social demographic profile was characterized, and the burden was evaluated by Caregiver Burden Scale. The descriptive statistics and the Spearman correlation were used. Results: It was obtained a burden global score of 2.4/4; the domains with larger scores were: general stress and frustration, both with 2.8/4. Conclusion: The understanding of how the family faces the challenges imposed by the immediate post hematopoietic stem cell transplantation guides the multiprofessional team a care centered in the family and to offer maximum support and guidance to the caregiver.

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The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

Aim: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. Materials and Methods: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens' parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. Results: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/ moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. Conclusions: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers' burden is not directly related to the income level or the functional level of the child. Families' need for information should also be prioritized within the rehabilitation program.

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Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child's specialist care?

Background: The purpose of this article is to offer an improved understanding of how parents of children with long-term disabilities are empowered to successfully take up their role as decision-making partners in the design and delivery of the care of their child. The intention is to stimulate dialogue, encourage reflection and provide practical suggestions for health professionals working with children and their families. Design: The reported findings are from a study which was guided by a constructivist grounded theory methodology. This involved an iterative process of repeated cycles of data collection and analysis, which comprised 12 semi-structured, in-depth interviews with 14 parents of children accessing paediatric services within a single National Health Service Trust. Results: A novel model, explaining how the power im/balance and the perceived state of the therapeutic relationship influence how successfully a parent takes up their position in the collaborative partnership, is presented and discussed. Conclusion: It is suggested that by thoughtfully addressing the traditional hierarchy that exists within healthcare, health professionals might facilitate the development of a 'truly' therapeutic relationship, which can help promote parental empowerment.

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A Balancing Act: Working and Caring for a Child with Cancer

Background: Parenting a child with cancer creates numerous additional care demands that may lead to increased difficulties in balancing work and family responsibilities. Still, there is limited knowledge of how parents cope with both parenthood and paid work after a child's cancer diagnosis. The aim of the study was to explore mothers' and fathers' experiences of balancing the dual roles of work and parenthood following a child's cancer diagnosis. Method: Nine focus groups with in total 32 parents of children with cancer in Sweden were conducted. The data was analysed using qualitative content analysis. Results: Three categories were identified: Shifts in the importance of the parent role and the work role, Influence of context and conditions on the balance of roles, and Long-term unbalance of roles. Parents expressed an increased appreciation of time spent with family, but also emphasized the importance of work to counterbalance the sometimes overwhelming parenting demands. The pre-existing financial situation, work situation, and employer behaviour were important factors influencing the parents' ability to balance work and family. Traditional gender roles influenced how couples divided responsibilities and reflected on their experiences. Mothers and fathers were also met with different expectations, which highlights the need for the healthcare to consider their communication with caregivers. Importantly, the parents expressed how the child's illness affected their ability to balance work and family for a long time, while the understanding and support from others had steadily declined. Conclusions: Enabling parents to care for their ill child without sacrificing their own career is of utmost importance, and future research should focus on identifying which factors facilitate for parents to achieve a sustainable work-life balance. 

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Autism-specific parenting self-efficacy: An examination of the role of parent-reported intervention involvement, satisfaction with intervention-related training, and caregiver burden

Background: Parenting self-efficacy, described as the beliefs parents hold about their ability to successfully parent their children, has been shown to support parent and child well-being. Parents of children with autism spectrum disorder face disproportionately high levels of demand both as caregivers, and as partners in multiple, complex, intervention programs. This study examines the relationship between parents' experiences with their child's interventions—specifically their sense of involvement in treatment and satisfaction with intervention-related training—and their confidence in parenting a child with autism spectrum disorder, defined as autism-specific parenting self-efficacy. Methods: Participants (N = 438, 93% mothers of children with autism spectrum disorder aged 2–17 years) completed our novel autism-specific parenting self-efficacy scale and rated their experience of involvement in their child's interventions and satisfaction with intervention-related training across a range of common autism spectrum disorder–related treatments. Respondents also completed a caregiver burden scale. Results: Findings indicate that parents who report greater involvement in their child's interventions, and note greater satisfaction with intervention-related training, also report greater autism-specific parenting self-efficacy. Parents who report greater financial and social burden report lower autism-specific parenting self-efficacy. Conclusions: We propose that these results are important in creating intervention experiences that foster parental self-efficacy through involvement, productive training experiences, and addressing parental burden.  

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Association between the social support for mothers of patients with eating disorders, maternal mental health, and patient symptomatic severity: A cross-sectional study

Background: Although caregivers of patients with eating disorders usually experience a heavy caregiving burden, the effects of social support on caregivers of patients with eating disorders are unknown. This study aimed to investigate how social support for mothers who are caregivers of patients with an eating disorder improves the mothers’ mental status and, consequently, the symptoms and status of the patients. Methods: Fifty-seven pairs of participants were recruited from four family self-help groups and one university hospital in Japan. Recruitment was conducted from July 2017 to August 2018. Mothers were evaluated for social support using the Japanese version of the Social Provisions Scale-10 item (SPS-10), self-efficacy using the General Self-Efficacy Scale, loneliness using the University of California, Los Angeles Loneliness Scale, listening attitude using the Active Listening Attitude Scale, family functioning using the Family Assessment Device, depression symptoms using the Beck Depression Inventory (Second Edition), and psychological distress using the Kessler Psychological Distress Scale. Patients were evaluated for self-esteem using the Rosenberg Self-Esteem Scale, assertion using the Youth Assertion Scale, and their symptoms using the Eating Disorder Inventory. We divided the mothers and patients into two groups based on the mean score of the SPS-10 of mothers and compared the status of mothers and patients between the high- and low-scoring groups. Results: High social support for mothers of patients with eating disorders was significantly associated with lower scores for loneliness and depression of these mothers. We found no significant differences in any patient scores based on mothers’ level of social support. Conclusions: For patients with eating disorders, social support for a caregiver cannot be expected to improve their symptoms, but it may help prevent caregiver depression and loneliness.

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Assistive technologies for children with cognitive and/or motor disabilities: interviews as a means to diagnose the training needs of informal caregivers

Purpose: The present study seeks to survey information and training needs of informal caregivers related to the use of assistive technologies at home, so as to, in the near future, try to meet them. Therefore, the full aim of this study is to contribute to reducing technology abandonment and to enhancing its use in the family setting by children with cognitive and/or motor limitations. Materials and methods: Content analysis of a set of ten interviews with informal caregivers of children and youngsters with cognitive and/or motor disabilities. Results: Assistive technologies open a wide range of opportunities, mostly to students whose learning skills diverge from standard development. They promote communication, independence as well as inclusion of children with cognitive and/or motor disabilities. Despite the human and material resources available, the implementation of assistive technologies in many family settings is still a struggling task. The results reveal a perspective on (i) the interaction between those caregivers and their children, (ii) children’s skills in using assistive technology, (iii) caregivers’ digital literacy and (iv) their training needs. Conclusions: The present paper highlights the fact that carrying out interviews with informal caregivers leads to obtaining significant data for a diagnosis of the use of assistive technologies in the family setting and to assess the needs of informal caregivers. From this study, the need to provide caregivers with further training on assistive technologies emerges as preponderant, and to improve caregivers’ skills in the search for and access to practical information.Implication for Rehabilitation Cognitive and/or motor disabilities impact on communication, independence and also on the full inclusion of children, especially when efforts developed at school do not have any follow up at home. Endowing informal caregivers with the knowledge and skills to use assistive devices with their children is a step forward to their full development. Interviews conducted with informal caregivers are a means to gaining insights into understanding the reasons behind assistive technology abandonment at home. 

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Anxiety and depression among caregivers of young children with Congenital Zika Syndrome in Brazil

Aims: To examine the psychological well-being of primary caregivers of infants and toddlers with Congenital Zika Syndrome (CZS), and the roles of family resources, parenting stress, and coping strategies in caregivers' adaptation. Methods: Family caregivers (N = 50) of children with CZS who were receiving treatment at a rehabilitation hospital in Recife, Brazil participated a cross-sectional survey study. Caregivers completed measures of anxiety and depression, coping strategies, family resources, and parenting stress. Results: Mild to severe symptoms of depression were identified in 40% of caregivers and were a more prominent concern than symptoms of anxiety. Fewer family resources and high levels of parenting stress were significantly associated with both anxiety and depression. The association between parenting stress and depression was moderated by coping, such that parenting stress was associated with higher caregiver depression at low but not high levels of coping strategy use. Conclusions: Practitioners in Brazil should consider the role of family coping and resources as important resilience promoting factors in the development of new programs designed to promote psychological adaptation in caregivers to children with CZS. It is recommended that caregiver mental health support services be integrated into existing early intervention programs targeting children with CZS. Parents and other primary caregivers are encouraged to take an active role in the care and developmental monitoring of children born with CZS, but their ability to provide care may be compromised by difficulties in psychological adaptation. Moderate and severe symptoms of depression were more prominent in caregivers than moderate and severe symptoms of anxiety (20% versus 6%, respectively). Practitioners should include assessment of coping strategies, parenting stress and family resources conjointly with evaluation of symptoms of depression and anxiety as part of routine CZS family evaluations. A useful approach for caregivers in Brazil may be to more fully integrate caregiver mental health support services into existing early intervention programs for children with CZS.

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Advance Care Planning in Pediatric Serious Illness: Centering in the Family Experience

The article presents a study which analyzed the effects of advanced care planning interventions like the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) on families' evaluation of their experiences in familial distress and caregiving. FACE-TC is recognized by the National Cancer Institute. Allso cited is the importance of pediatric palliative care in addressing the patients' and families' goals and values during serious illnesses.

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Adolescent Latinas' with Diabetes and Their Mothers' Understanding of Diabetes and Reproductive Health: Converging Themes to Inform a Culturally Sensitive Preconception Counseling Program

Background: Latinas are at an increased risk for diabetes and reproductive health (RH) complications with sexuality and pregnancy. This study explored the understanding of diabetes related to RH, pregnancy, unplanned pregnancies, preconceptioncounseling, tight-control, and family planning among Latina adolescents with diabetes and their mothers and explored converging themes. Method: The qualitative descriptive study used written open-ended questions (English or Spanish) with Latina mothers (n = 13) and daughters (n = 21). Responses were transcribed. Content analysis was used by four researchers who coded and discussed themes and reached consensus. Converging themes were confirmed using Atlas.ti software. Findings: Seven themes emerged from the mother–daughter dyad: communication (awkwardness, ambivalence, styles); control (being controlled vs. controlling); consequences (fertility, complications); planning (pregnancy, being healthy, life plan, RH); support; danger, risk, and safety; and stigma. Conclusion: Many mother–daughter dyads were not ready to discuss RH among themselves. Cultural and familial perspectives should be considered when providing care and preconception counseling to this population.

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The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis

Objectives: Mothers of school age and older children with developmental disabilities experience poorer health than mothers of typically developing children. This review assesses the evidence for the effect on mothers’ health of caring for young children with developmental disabilities, and the influence of different disability diagnoses and socioeconomic status. Methods: Medline, EMBASE, PsycINFO and CINAHL were searched. Studies measuring at least one symptom, using a quantitative scale, in mothers of preschool children (0–5 years) with and without a diagnosed developmental disability were selected. Random effects meta-analysis was performed, and predictive intervals reported due to high expected heterogeneity. Results: The meta-analysis included 23 estimates of association from 14 retrospective studies for the outcomes of stress (n = 11), depressive symptoms (n = 9), general health (n = 2) and fatigue (n = 1). Caring for a child with a developmental disability was associated with greater ill health (standardised mean difference 0.87; 95% predictive interval − 0.47, 2.22). The largest association was for mixed developmental disabilities (1.36; − 0.64, 3.36) and smallest for Down syndrome (0.38; − 2.17, 2.92). There was insufficient socioeconomic information to perform subgroup analysis. The small number of studies and data heterogeneity limited the precision of the estimates of association and generalizability of the findings. Conclusions for Practice: Mothers of young children with developmental disabilities may have poorer health than those with typically developing children. Research is needed to identify whether the relationship is causal and, if so, interventions that could reduce the negative effect of caregiving.

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Assessment of caregiver expectations of physician communication in a pediatric setting

Background: In pediatrics, communication often occurs through an intermediary such as a caregiver. The goal of this study is to assess caregiver communication expectations and determine if meeting expectations influences caregiver satisfaction or instruction retention. Methods: A survey study was performed at the Children’s Hospital of Philadelphia. Before the visit, caregivers completed a survey on communication expectations, Caregiver Expected Kalamazoo Essential Elements Communication Checklist (Caregiver Expected KEECC). After the visit, caregivers were surveyed on their perception of physician communication (Caregiver Perceived KEECC) and satisfaction. Caregivers were contacted 1 week after the clinic visit to assess instruction retention. Meeting of caregiver expectation was calculated by the difference between Caregiver Expected and Caregiver Perceived KEECC scores. Results: 112 caregivers participated in the study. There was no significant difference in Caregiver Expected KEECC versus Caregiver Perceived KEECC score (4.39 vs 4.56). Caregiver communication expectations were exceeded in 51.5% of the visits. Communication expectations were exceeded more among caregivers with at a college education (p <  0.01) and more among White caregivers (p <  0.01). The average caregiver satisfaction score with the clinic visit was 4.67. Higher satisfaction scores were observed in caregivers who had their communication expectations met or exceeded (p <  0.01). Caregivers with communication expectations exceeded had higher percentage recall of physician instructions (p <  0.01). Conclusions: Caregiver communication expectations may be influenced by demographic factors. Communication expectation affects visit outcomes including caregiver satisfaction and instruction retention. Therefore, physicians need to be cognizant of caregiver communication expectations, which can impact quality of the healthcare experience.

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Health behaviors of caregivers of childhood cancer survivors: a cross-sectional study

Background: Caregiving for childhood cancer survivors may be burdensome for caregivers and affect their physical health and health behaviors. However, studies examining health behaviors in caregivers of childhood cancer survivors are scarce. This study aimed to examine health behaviors of caregivers of childhood cancer survivors by comparing them with those of the general population, and analyze associated factors. Methods: This study included 326 caregivers of childhood cancer survivors recruited from 3 major hospitals in South Korea and 1304 controls from the Korean National Health and Nutritional Examination Survey matched for age, sex, and education level. We compared health behaviors between the two groups by using conditional logistic regression analyses, and investigated factors associated with unhealthy behaviors in caregivers by using multiple logistic regression analyses. Results: Caregivers were less likely to be physically inactive (aOR: 0.69, 95% CI: 0.51, 0.92) compared to controls, and this was more evident in women (aOR: 0.65, 95% CI: 0.45, 0.94). However, caregivers were more likely to be binge drinkers (aOR: 2.26, 95% CI: 1.73, 2.97), especially if they were men (aOR: 13.59, 95% CI: 8.09, 22.82). Factors associated with unhealthy behaviors in caregivers differed by the type of behavior. Current smoking risk was lower in female caregivers and in those with more comorbidities. Increasing age, female sex, higher education level, and lower household income were associated with lower risk of binge drinking. Higher household income and anxiety were associated with lower risk of physical inactivity, while depression was associated with higher risk of physical inactivity. Conclusions: Caregivers of childhood cancer survivors were more likely to engage in binge drinking, but less likely to be physically inactive. Strategies to promote adherence to desirable health behaviors in caregivers are needed with consideration of their socioeconomic and clinical factors, such as number of comorbidities.

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"Home wasn't really home anymore": Understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system

Purpose Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. Methods We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. Results Caregivers ranged from age 30 to 64 (M= 43). They described four ways that caregiving impacted themselves and the larger family system: (1)disruption of home life, (2)emotional (dis)connection, (3)juggling competing roles, and (4)developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. Conclusions Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.

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Informal carers

This House of Commons Library briefing paper provides information about the number of informal carers in the UK and the issues they face. It also explains the rights, benefits and support available to informal carers as well as current and previous Government policy on caring.

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