parents and caregivers
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John Robert C. Rilveria

AbstractThis study utilized a sequential explanatory mixed-methods design in understanding the secondary system of therapeutic alliance from the perspectives of parents and caregivers of children with autism. In the quantitative phase, data from the accomplished questionnaires of 124 parent–caregiver dyads were collected and analyzed. Four factors extracted from the literature: treatment attitude, treatment compliance, level of stress, and perceived autism severity were examined as possible predictors of parent–therapist alliance, caregiver–therapist alliance, and parent–caregiver alliance. In the qualitative phase, eight parent–caregiver dyads (who both scored high in their alliance with therapist, alliance with each other, treatment attitude, treatment compliance, and level of stress) were interviewed to probe on their experiences of alliance-building, parenting, and caregiving. The integration of both quantitative and qualitative data led to the formulation of a conceptual framework that explains how the factors influence the secondary system of therapeutic alliance. These findings emphasize that tapping into the personal experiences of parents and caregivers can help in identifying what they value in a working, therapeutic relationship. Moreover, communication, skills training, and feedback among therapists, parents, and caregivers are essential to enhance positive attitude toward treatment, promote compliance to treatment recommendations, and address sources of personal stress. Nevertheless, this study calls for future studies to build into the factors associated with the systemic therapeutic alliance and to implement intervention programs that may target issues relating to attitude toward treatment, compliance to treatment, and experience of parental and caregiver stress.

2021 ◽  
Vol 31 (3) ◽  
pp. 470-475
Alan Patricio Silva ◽  
Leticia Maria Factore Pacheco ◽  
Francisco Leitão ◽  
Matheus Paiva Emidio Cavalcanti ◽  
João Batista Francalino da Rocha ◽  

Introduction: at this critical moment of the COVID -19 pandemic, we observe the social withdrawal and the break from the routine of individuals in society, for people with disabilities who need adequate support and a routine of more intense and effective activities may feel a greater need for care and attention of family support for solving everyday problems. Objective: to identify factors associated with the impact of the pandemic on the quality of life of individuals with disabilities and their caregivers. Methods: a virtual survey was carried out with parents and caregivers of people with disabilities to identify the main factors associated with the impact of the Pandemic on daily life and social relationships between family and community. Results: of the parents and caregivers we had access to and answered the questionnaire, 90% are residents of the ABC region of São Paulo. Their children and adolescents with disabilities are between 4 and 18 years old. The main scores of caregivers on difficulties in care during the pandemic, 70% felt helpless at some point, 17% had difficulties in performing self-care activities, 42% had anguish and fear during the period, 83% have the greatest responsibility for household decisions, and about 50% can share those decisions. Conclusion: the main complaints about the care of people with disabilities during the COVID-19 pandemic are related to the feeling of fear and anguish that affects decision-making and family relationships, which influences self-care activities and mental health of this population.

BMJ Open ◽  
2021 ◽  
Vol 11 (12) ◽  
pp. e047919
Meredith Lee Brockway ◽  
Elizabeth Keys ◽  
Katherine Stuart Bright ◽  
Carla Ginn ◽  
Leslie Conlon ◽  

ObjectiveThe study objective was to identify the top 10 research priorities for expectant parents and caregivers of children up to age 24 months.DesignA priority setting partnership using a modified James Lind Alliance approach was implemented. First, a core steering committee was formed, consisting of 17 parents, clinicians and community agency representatives. Second, through in-person collaboration with steering committee members, we developed and distributed a survey to identify research priorities across 12 topics. In total, 596 participants consented and 480 completed the survey. Survey responses were grouped and themed into codes during a consensus-building workshop with steering committee members (n=18). Research and practice experts were consulted to provide feedback on which themes had already been researched. An in-person (n=21) workshop was used to establish the top 34 priorities, which were circulated to the broader steering committee (n=25) via an online survey. Finally, the core steering committee members (n=18) met to determine and rank a top 10 (plus 1) list of research priorities.SettingThis study was conducted in Alberta, Canada.ParticipantsExpectant parents and caregivers of children up to age 24 months.ResultsSurvey results provided 3232 responses, with 202 unique priorities. After expert feedback and steering committee consensus, a list of 34 priorities was moved forward for final consideration. The final top 10 (plus 1) research priorities included three priorities on mental health/relationships, two priorities on each of access to information, immunity and child development, and one priority on each of sleep, pregnancy/labour and feeding. Selecting 11 instead of 10 priorities was based on steering committee consensus.ConclusionsThe findings will direct future maternal–child research, ensuring it is rooted in parent-identified priorities that represent contemporary needs. To provide meaningful outcomes, research in these priority areas must consider diverse socioeconomic backgrounds and experiences.

Laura Dague ◽  
Marguerite Burns ◽  
Donna Friedsam

Abstract Context: States have sought to experiment with the income eligibility threshold between Medicaid coverage and access to subsidized Marketplace plans in an effort to increase coverage for low-income adults while meeting other state priorities, particularly a balanced budget. In 2014, Wisconsin opted against adoption of an ACA Medicaid expansion, instead setting the Medicaid eligibility threshold at 100% of the poverty level—a state-funded partial expansion. Childless adults gained new eligibility, while parents and caregivers with incomes between 101–200% of poverty lost existing eligibility. Methods: We use Wisconsin’s all-payer claims database to assess health insurance gains, losses, and transitions among low-income adults affected by this partial expansion. Findings: We find that less than one third of adults who lost Medicaid eligibility definitely took up commercial coverage, and many returned to Medicaid. Among those newly Medicaid eligible, there was little evidence of crowd-out. Both groups experienced limited continuity of coverage. Overall, new Medicaid enrollment of childless adults was offset by coverage losses among parents and caregivers, rendering Wisconsin’s overall coverage gains similar to non-expansion states. Conclusions: Wisconsin’s experience demonstrates the difficulty in relying on the Marketplace to cover the near poor and suggests that full Medicaid expansion more effectively increases coverage.

Petra Marsico ◽  
Judith V. Graser ◽  
Hubertus J. A. van Hedel

Abstract Objectives The techniques facilitation of activities, arrangement of task or situation, verbal and non-verbal communication, and counseling and empowerment of parents and caregivers are applied in different therapy approaches to improve motor function in children with neuromotor disorders. This review quantitatively examines the effectiveness of these four techniques allocated to pre-defined age groups and levels of disability. Methods We followed the systematic review methodology proposed by the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). The search was conducted on PubMed, Scopus, EMBASE, PEDro, OT Seeker, ERIC, and CINAHL. The main outcomes of the included articles were allocated to the framework of the International Classification of Functioning, Disability, and Health (body functions, activities, and participation). Results The search yielded eleven studies for facilitation, 22 for arrangement of task or situation, three for verbal and non-verbal communication, and three studies for counseling and empowerment. The effect sizes indicated strong evidence for body function and activity outcomes for the use of facilitation in newborns until the age of 2 years and the arrangement of tasks in children between 2 and 5 years with cerebral palsy. Conclusions Thus, while some evidence exist for facilitation and arrangement of task or situation, further research is needed on the effectiveness of verbal and non-verbal communication and counseling and empowerment of parents and caregivers to improve motor function, activities, and participation. Systematic review registration. PROSPERO CRD42017048583.

2021 ◽  
Vol 21 (1) ◽  
Xue Yu ◽  
Lei Miao ◽  
Jun Zhu ◽  
Juan Liang ◽  
Li Dai ◽  

Abstract Background This retrospective study aimed to determine the epidemiological features of deaths caused by unintentional suffocation among infants in China. Methods The data used in this study were obtained from China’s Under 5 Child Mortality Surveillance System (U5CMSS) from October 1, 2015, to September 30, 2016. A total of 377 children under 1 year of age who died from unintentional suffocation were included in the survey. Primary caregivers were interviewed individually using the Unintentional Suffocation Mortality among Children under 5 Questionnaire. EpiData was used to establish the database, and the results were analysed using SPSS 22.0. Results Most (85.9%) unintentional infant suffocations occurred in rural areas, and 67.5% occurred in infants 0 to 3 months old. Among the primary caregivers of the infants, most (82.7%) had a junior middle school education or below, and 83.1% of them lacked unintentional suffocation first aid skills. Of the 377 unintentional suffocated-infant deaths, the causes of death were accidental suffocation and strangulation in bed (ASSB) (193, 51.2%), inhalation suffocation (154, 40.8%), other unintentional suffocation (6, 1.6%), and unknown (24, 6.4%). Among the infant deaths due to ASSB, overlaying (88.6%) was the most frequently reported circumstance. A total of 93.8% of cases reported occurred during co-sleeping/bed sharing with parents, and in 72.8% of the cases, the infants were covered with the same quilt as their parents. In our study, most inhalation suffocation deaths (88.3%) involved liquid food (such as breast milk and formula milk). A total of 80.5% of infant deaths reportedly occurred after eating; in 28.2% of those cases, the infants were held upright and patted by their caregivers, and 57.2% of them were laid down to sleep immediately after eating. Conclusions To reduce the occurrence of unintentional suffocation, local government should strengthen knowledge and awareness of unintentional suffocation prevention and safety among parents and caregivers. Additionally, health care providers should educate parents and caregivers about safety issues of unintentional suffocation, and relevant policies should be introduced to provide environments and activities that reduce the risk of suffocation, such as promoting the Safe to Sleep Campaign. It is important to enhance the focus on infant unintentional suffocation as a health issue.

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