Who is a caregiver of children

This reassures the child that the life they know is still going to go on, despite the change in health of their family member.

Second, though it is often easy to accept the help of others when we are ill, it is vital for children in this type of household to have the adult remain as independent as possible, and that they rely on available adult help.

This diminishes the role-conflict that can arise when children take on adult responsibilities. Utilize the children in performing age-appropriate tasks, such as folding their own clothes, feeding pets, taking out the trash or loading the dishwasher, and save the more adult responsibilities, such as medication administration, dressing changes, and providing personal hygiene, for the adult caregivers.

Utilize outside resources to supplement in-home care to keep child caregiving to a minimum. As difficult as it can be when illness or disability enters into a home, there needs to be equal focus on both the needs of the child and the needs of the person who is ill. This can also help to decrease mood changes associated with fear or loss of control, as they have the opportunity to succeed outside the home environment with the support and approval of those in the home.

Escape behaviors come into play when the child has to devote a large amount of time providing care for the ill or disabled person, or is having difficulty coping with the change in role. A means of coping, these avoidance behaviors serve to de-stimulate the child and insulate them from their feelings.

Though normal self-isolation behaviors may occur, they are less likely to be in response to feelings of stress related to the illness or disability. Children are affected by illness in the household, just as it affects others in the home. When young people are put into the role of caregiver, there can develop a role-conflict and changing dynamic in the parent-child relationship that can manifest itself in both emotional and physical ways. Understanding the effects of this situation, the grief associated with the change in the home environment, and the stress response in the child can aid in making changes in the expectations of children in this setting, and help them cope and respond in a more positive and age-appropriate manner to this unique and challenging situation.

Joel and Scott agree with this. How do I know? I am their mother; I have fibromyalgia and I had a stroke at the age of Skip to main content. Advertise Shop. Additionally, programs that used a combined delivery format of group and individual sessions showed a greater impact than either format used in isolation on reduction of challenging behaviors.

As starting point for the development of CST, the results of the systematic review and meta-analysis were examined and discussed by global leaders with experience in parent-mediated interventions from diverse professional, geographic, and cultural backgrounds at a meeting at WHO Headquarters.

The meeting included representatives from 21 countries across all six populated continents with a majority of representatives from LMICs, according to World Bank Classification. Representatives included academic leaders, clinicians, foundation leadership, practitioners, and caregivers beneficiaries.

These representatives were asked to advise on content and structure of the intervention, help address acceptability and feasibility concerns, and identify capacity building strategies. The content of the core sessions was recommended to include promoting joint engagement, promoting spoken and nonverbal communication to request and share attention, reducing challenging behavior, teaching skills for daily living, and promoting caregiving well-being.

Additional topics that were suggested as important included strategies tailored for children who have minimal spontaneous spoken language and additional materials on caregiver well-being and comorbid conditions.

Alternative scripts for stories and role plays are provided to enable further tailoring of the content to the needs and priorities of families. Home visits are also critical for rapport building with the whole family and identification of additional family needs requiring referral to other services or professionals.

A cascade training and supervision model was decided on as a critical element for effective and cost-effective implementation of CST by nonspecialist providers such as nurses, community health workers, and peer caregivers at the health facility or community level, or in schools, allowing for program scale-up. To effectively support the implementation of CST by nonspecialist providers, especially in lower-resource settings, a continuous support and supervision model was incorporated.

Given the global lack of service providers and long wait times, which would create an unnecessary delay in access to needed treatment, the inclusion and exclusion criteria for the target beneficiaries of the intervention were chosen to be as inclusive as possible, and it was decided that a diagnosis should not be required. The target group for the program was therefore identified as that of caregivers of children aged 2 to 9 years presenting with a developmental disorder or delay.

The wide age range was decided on because children are often identified late, particularly in low-resource settings, and a program for caregivers of younger children would need to be offered in partnership with early intervention programs, which may not be yet in place. Other principles agreed on included the need to carefully consider the optimal intensity of the program in terms of number and duration of sessions. Considerable attention was paid to retention strategies designed to decrease the risk of dropout and increase engagement of families, such as regular phone calls, text messages, and provision of refreshments.

The program was designed to include nine core modules for group sessions aimed at training caregivers in the use of strategies that target key domains of child and caregiver functioning Table 1 , complemented by three home visits; three optional group session modules were also developed.

A major recommendation from the expert consultation was the requirement to appropriately address the heterogeneous needs of children and families, given the broad target group.

These target routines are regularly revised during the program to ensure that they continue to be appropriate. The second individualized component of the program consists of one-to-one coaching provided to caregivers both during group sessions, through role-play activities, and at the home visits, during live interaction with the child.

Lastly, optional modules with a focus on a children who have minimal spontaneous spoken language, b those with other comorbid conditions, and c caregiver well-being were made available to ensure that comorbidities and other co-occurring needs could be addressed.

A suite of materials for field testing was developed, including a intervention manuals and user-facing documents session-by-session facilitator guides, facilitator home visits guide and goal setting form and session-by-session participant booklets ; b materials developed to assist countries in the planning and adaptation phases planning guidance, planning meeting materials, adaptation and implementation guidance and materials ; c materials for training master trainers and facilitators training of trainer [ToT] course and supervision models ; and d materials to record, monitor, and assess processes and outcomes in the prepilot and pilot-testing phases monitoring and evaluation framework.

The primary program targets are defined as increased spontaneous nonverbal and verbal communication and increased time in shared engagement, and secondary targets include reduced child challenging behavior, improved caregiver coping skills and psychological well-being, and improved family functioning. The program was developed with an additional aim of facilitating stigma reduction against persons with developmental disorders and promoting increased inclusion and community participation of these children.

Over the course of the program, caregivers are taught intervention strategies derived from principles of Naturalistic Developmental Behavioral Interventions and principles of applied behavior analysis for neurodevelopmental disorders. On the other hand, CST uses incidental teaching techniques incorporating elements of the science of learning including modeling, shaping, chaining, prompting, and differential reinforcement within the context of natural stimulus conditions of everyday environments Such teaching techniques are used within a naturalistic framework, with the use of natural rewards 19 , use of child-preferred options 20 , and reinforcement of approximations and communicative attempts.

Exposing the child to multiple learning experiences targeting the same skills in different real-life contexts as opposed to structured trials with artificial stimuli is shown to predict greater generalization of skills, tolerance of real-world distractions, and reduced dependence on prompting Caregivers of children with developmental disabilities experience higher stress and distress than parents of typically developing children 23 , Furthermore, parent distress predicts child outcomes and outcomes from behavioral parenting interventions 23 , 25 , Therefore, the approach emphasizes the importance of parent self-care throughout core sessions, including introduction of relaxation exercises.

An optional module on caregiver well-being is also incorporated, which draws on strategies from acceptance and commitment therapy, an empirically based approach that has shown promise in improving parent and child outcomes in families of children with disabilities 27 — To provide a practical example of how within CST caregivers are taught routine building, we illustrate below how to establish a routine in the context of a caregiver and child dyad taking items out of a shopping bag.

First, the adult would need to identify which specific actions constitute, on that occasion, the steps that are appropriate for them and their child to follow e.

Then, the adult would make sure to assume an active but balanced role, rather than solely asking the child to complete actions or, conversely, dominating the interaction completely by leading all the steps. A balanced active role would therefore entail taking turns with the child in completing each step; these may mean alternating on doing the same action direct imitation , or steps may be different for the child and the adult, such as the child taking items out and the adult putting them into a cupboard or container.

A strong focus would be given on promoting child engagement by making the routine affectively salient e. The evidence-based principles illustrated above are taught to caregivers using accessible language as key messages general psychoeducational messages about developmental disorders and delays and tips hands-on strategies and skills for interacting with the child.

The latter are shown during the group sessions through adult-learning techniques such as group discussions, modeling, and guided role playing Table 2. Illustrated booklets with the key messages and tips are provided to participants at each group session. In addition, the one-to-one provider-to-caregiver coaching provided during the home visits prior to the first group session, midway, and at the end of the program is an opportunity to give more emphasis on strategies that are most relevant and suitable for each caregiver—child dyad.

In line with most evidence-based interventions, the CST intervention package includes measures of fidelity of implementation. The Adapted ENACT WHO CST Team, unpublished includes assessment of verbally illustrating and modeling use of strategies, facilitating group discussion, coaching caregivers within role play, and sensitive reflection and feedback provision.

Since fidelity of implementation is key to optimal child outcomes 41 — 43 , the WHO CST Team encourages the assessment of fidelity in all phases of field testing. As a global program, WHO CST was developed to be adapted to the cultural, socioeconomic, geographic, and resource context in which it is used. Adaptation refers to the systematic modification of an intervention to ensure that it is comprehensible, acceptable, feasible, and relevant to target users There is evidence that culturally and contextually adapted programs are effective and improve feasibility 45 — The implementation package for the CST program outlines the objectives and process of adaptation in detail using the Bernal Framework, a method for coding adaptation of interventions This framework uses the ecological validity model, which consists of eight dimensions: language, persons, metaphors, content, concepts, goals, methods, and context The adaptation process aims to maximize accessibility, feasibility, and acceptability and reduce foreseeable barriers to participation.

As part of the development phase, effort was made to reduce the need for cultural adaptation by limiting the use of cultural symbols and phrases and utilizing more universal symbols and phrasing, using plain language whenever possible, avoiding Western biases such as toward individualism or consumerism, and aiming to ensure that the program is consistent with the reality of participants in low-resource settings.

Adaptation guidance was created and included as part of the CST toolkit. The suggested process includes creation of a local adaptation team, formal consultation with an adaptation advisory group of community stakeholders, and adaptation framework, guidance, and documentation form.

Adaptations to the program can be made to the program content aspects of the nonspecialist provider guides and participants booklets and to the program process e. Recommended adaptations to program materials include i translation into the local language, ensuring language use vocabulary, phrasing, verbal style, etc. An iterative process of revisions that incorporated inputs from the first stakeholder workshop and a second external expert review resulted in the finalization of program materials WHO CST Test-Run Version.

This version of the program was prepiloted for the first time with a group of caregivers of preschoolers with autism spectrum disorder and co-occurring intellectual disability in Northern Italy. The objective of the test run was the preliminary assessment of feasibility and acceptability of key delivery components and methods of the program prior to making available the materials for global field testing.

Group sessions and home visits were led by a WHO CST Team member who contributed to the development of the program and translated the materials in Italian ES , assisted by a local clinical psychologist with expertise in disability and parenting programs.

The choice of specialist, rather than nonspecialist, providers was deemed necessary to allow for live troubleshooting, even though the program had been ultimately designed to be delivered by nonspecialists.

Data derived from the evaluation of feasibility and acceptability of the test run implementation and those collected from consultation meetings, master training courses, and prepilot testing of the WHO CST Original Version in the first countries involved in the global CST field-testing initiative, such as Ethiopia 51 , were collated. The complete suite of materials for field testing includes intervention manuals, training and supervision models, monitoring and evaluation framework.

Official field-test versions of the package are now also available in Spanish, and translations are in process in multiple other languages. Participating sites progress through four phases outlined in a monitoring and evaluation framework for field testing, consisting of 1 planning and adaption, 2 ToT and post-ToT practice, 3 prepilot field testing, and 4 pilot testing.

Input from field testing is being collected in order to contribute to the development of the final version of the CST package, which will be made available on the WHO website. A survey of adaptation processes and contents among sites participating in the field testing is underway. Minor changes to content included changes to names of characters, idioms, language use, aspects of stories, objects, style of character dialogues in the stories, the addition of psychoeducational messages particularly relevant to the context e.

Changes to program process to support attendance included providing child care for group sessions, weekly peer support phone calls, refreshments, small gifts, post-program celebration, and additional outdoor self-care activities for caregivers.

An adaptation for a low-resource, low-literacy setting was conducted in Ethiopia in consultation with community stakeholders. Adaptations included modification of activities that required writing, simplification of provider demonstrations and participant booklets, additional information on addressing expectations of a cure and discouraging physical punishment, removal of the picture schedule component, and increased emphasis on use of gestures.

The program was also adapted for delivery by family volunteers in rural Pakistan using a tablet-based application that serves as a training, intervention delivery, and monitoring tool. Adaptation and piloting of the program in high-income settings are also underway, including in Italy 53 , Canada, and the United States. The field-testing phase and, in particular, data derived from the planning and engagement workshops with stakeholders will provide additional insight into opportunities for integrating the support to caregivers into existing community-based services or programs.

Additional studies, evaluating cost-effectiveness, component analysis, alternative delivery methods, and dosage, will also be beneficial.

See more words from the same year. Accessed 12 Nov. More Definitions for caregiver. See the full definition for caregiver in the English Language Learners Dictionary. Nglish: Translation of caregiver for Spanish Speakers. Britannica English: Translation of caregiver for Arabic Speakers.

Subscribe to America's largest dictionary and get thousands more definitions and advanced search—ad free! Log in Sign Up. Save Word. Definition of caregiver. Kazdin et al. You probably can imagine the difficulty a caregiver can have getting an immobile patient into a whirlpool. Many readers … had their own stories of being treated badly at work because of caregiving duties.