Income support for parents of children with chronic conditions and disability: where do we draw the line? A policy review

ObjectiveThe aim of this review was to identify and describe whether parents who have had to stop paid employment to care for a child with a chronic condition or disability are eligible for unemployment, family and children, and disability and carer government-provided financial benefits.DesignPolicy review.SettingGroup of seven high-income countries.Main outcome measuresAll policies related to unemployment, family and children, and disability and carer benefits were included. Information regarding the policy type and description, parent/carer qualification, amount of financial support payable, eligibility criteria and information source were extracted. Payment schedules were converted into 2020 US dollars, using Purchasing Power Parities. Maximum monthly benefit payments were compared with standardised per capita monthly costs of living to determine payment support suitability.ResultsFifty-eight policies relevant to unemployment, family and children, and disability and carer benefit supports were identified. Germany had the highest number of welfare policies for individuals not in employment (n=11), followed by the USA (n=6). Parents or carers of children with chronic conditions or disability who were not in employment qualified for 31 of the 58 policies (53.4%). Most policies required a child to have an impaired ability to function, not just a chronic condition or disability.ConclusionsGreater support for parents and carers to continue their paid employment alongside caring responsibilities is necessary. Graded benefit schedules will also be critical to supporting the spectrum of childhood chronic conditions and disability, and the subsequent spectrum of caring responsibility.

Burnout in the Primary Caregivers of Children With Chronic Conditions and its Related Factors

Background: A majority of parents of children with chronic illness encounter physical conditions, as well as some degrees of burnout, anxiety, and depression. This study examined the prevalence of burnout in the primary caregivers of children with chronic conditions and its related factors. Methods: A descriptive cross-sectional study was conducted on 385 family caregivers of children with chronic conditions who were selected by convenience sampling method from 4 healthcare centers in Kashan and Isfahan Provinces, Iran. A demographics questionnaire and the Maslach Burnout Inventory (MBI) were used to gather the required data. The MBI assesses caregiver burnout in 3 domains of emotional exhaustion, depersonalization, and reduced personal accomplishment. The obtained data were analyzed in SPSS using Mann-Whitney U test, Kruskal-Wallis test, Chi-Squared test, Fisher’s Exact test, Analysis of Variance (ANOVA), and linear regression analysis. P<0.05 was considered significant. Results: The Mean±SD age of the examined caregivers and children were 38.2±8.04 and 8.9±4.9 years, respectively. Fifty percent of the research participants were fathers, and 74.3% had a family size of >4 members. The ill children were mostly boys (60%) and afflicted with renal (45.2%) or neurological (18.2%) disorders. The mean scores of the caregivers in the 3 subscales of emotional exhaustion, depersonalization, and personal accomplishment, were 22.21, 6.40, and 13.24, respectively. However, 62.3% and 47.9% of the caregivers experienced high or moderate levels of emotional exhaustion and depersonalization; nearly all of them (99.2%) experienced reduced personal accomplishment. The age of the child, the type of chronic condition, the frequency of medical visits, as well as the caregiver’s age, job, income, and family size, could predict caregiver burnout (r2=0.17). Conclusion: The family caregivers of children with chronic conditions experience moderate burnout. Nurses and other healthcare providers should be aware of the signs of caregiver burnout and its contributing factors; accordingly; appropriate plans should be made for the periodic evaluation of family caregivers.

Guarantee of the social rights of children with chronic conditions: reinventing care towards civil rights

ABSTRACT Objective: To analyze the experiences of families in the exercise of the rights of children with chronic conditions in public health, education and social assistance institutions. Method: ethnographic multiple case study, with qualitative approach, following the theoretical approach of Boaventura Santos. Experiences of the families of these children in a city were studied through interviews with family members, managers and professionals from social institutions (35), participant observations in social spaces (13) and creation of eco-maps (3). Critical Discourse Analysis was performed. Results: the offer of services is lower than the demand, and exclusion processes persist. Given the hegemony of neoliberal and normality ideologies, meetings between family members and professionals revealed obstacles to civil rights; however, when these ideologies were challenged, the realization of their rights was enhanced. Final considerations: the care to promote civil rights requires family members, managers and professionals to develop subjectivities that overcome neoliberal and normality ideologies, recognizing these children as subjects of law.

Providing Home-Based Support for Children with Chronic Conditions in an Urban Slum: Experiences from a Community-Based Palliative Care Program in Bangladesh

We describe the palliative care needs of children with chronic conditions and their caregivers in an urban slum in Bangladesh. In this cross-sectional study, we interviewed 25 caregivers whose children receive support from a community-based program lead by community health workers, that provides medication, medical supplies, food, caregiver training, and psychological support free of charge. The chronic conditions of children in the program included cerebral palsy (80%), congenital heart disease (8%), neurodegenerative conditions (4%), cancer (4%), and intellectual disabilities (4%). Common symptoms included cough or breathing problems (64%), fever (56%), and pain (56%). Most caregivers (96%) reported they were unable to do any paid work due to their child’s needs and in all families, the child’s condition had a significant impact on their financial situation. Community-based palliative care programs can be developed to support children with chronic conditions who may not access care from acute care facilities.

Communication in health and inter-professional collaboration in the care for children with chronic conditions

Objective: to understand how health communication in the care of children with chronic conditions interferes with inter-professional collaboration. Method: a multicentric qualitative research. Data collection, carried out through interviews and observation, occurred from October 2017 to February 2018. For data organization, the NVivo software, version 12, was used. These data were analyzed from a dialectical perspective. Results: a total of 79 professionals were interviewed, including physicians and nurses in the Family Health Strategy. Essential markers for inter-professionality stand out, such as multi-institutional communication; the historical and political context of the municipalities; the bond between staff and families with children with chronic conditions; and active and purposeful communication. Conclusion: inter-professional collaboration is strengthened when the therapeutic plan of the child with a chronic condition is coordinated by the Family Health Strategy, plus the intention of communicating with the secondary sector. It is considered that the research included important issues, contributing to planning the work process in the Family Health Strategy.