EMPOWER CARE: A PARTICIPATORY

RESEARCH INITIATIVE FOR YOUNG CARERS

OF SEND CHILDREN AT HOME.
 INTRODUCTION
Caretakers face significant obstacles when caring for children with significant Educational Needs and
Disabilities (SEND), who frequently need intensive and specialized care. The extensive negative effects of
caregiving on young caregivers' physical, emotional, and social wellbeing are highlighted in the literature.
Due to the complexity of their caring responsibilities, studies (such as Hanson et al., 2022; Leu et al.,
2023) highlight the necessity of recognizing and supporting young carers as an at-risk demographic.
Approaching and engaging with young carers on their own will
Existing help in England that does not meet their needs
Difference that research would create for young careres (8-17 years).
Rationale : By including young people in the research process, this study aims to empower young
caregivers who help children with Special Educational Needs and Disabilities (SEND). Active participation
is needed for comprehending particular difficulties, requirements, and perceptions.
Methodology: Participatory Approach, Focus Groups and Interviews, Needs Assessment, Collaborative Analysis
Workshops, Development of Resources, Awareness and Advocacy, Ethical considerations.
Collaboration/participation
questions
Who will plan/design the
research? (Think about whether
YP will be fully involved or perhaps
involved in an advisory capacity)
What is/are the research
question(s) or topics and who will
decide on these?
Is this a collaborative process?
How will the children/YP be
Answer Ethical issue
Collaborative research design involving active Ensuring genuine, impactful involvement
input from young carers for SEND children. without tokenism; valuing contributions,
agency, and well-being.
Research question: How can young caregivers Ensuring genuine collaboration and avoiding
who support children with Special Educational tokenism in research involving young carers.
Needs and Disabilities (SEND) be empowered
by a participatory research approach to
enhance their caregiving experiences and
promote improved support services?
Collaborative research focuses on young carers
aiding children with SEND actively.
Enhancing caregiving skills in children and Balancing tailored support with respect for
supported to develop the skills youth through targeted workshops. autonomy in skill development.
needed for their roles?

How will you generate data (data Involving young carers actively through Prioritizing informed consent, data privacy,
collection methods)? participatory methods like interviews and and well-being of young carers during data
creative expressions collection.

Who will collect the data? Data collected by researchers and supervised Confidentiality, informed consent, and
young carers to maintain accuracy. participant well-being, especially involving
young carers in data collection.

Who will be the participants? Young carers responsible for children with Respecting autonomy, consent, and well-
SEND will participate being of young carer participants, ensuring
confidentiality

How will you find your Recruitment via collaboration with diverse Prioritizing informed consent, autonomy,
participants? organizations for a representative sample and well-being of participants, addressing
power dynamics.
Who will be involved in analysing Analysis by researchers and guided Balancing young carers' participation
data? If YP are to be involved how involvement of young carers for accuracy. considering age, capacity, and emotional
will this be done? impact. Accuracy and reliability are vital,
too.

How might you disseminate your Dissemination through publications, Respect privacy, accurate representation,
research? presentations, and briefs for accessibility and and accessible information in dissemination
impact. for integrity.

Who will be involved and how? Involvement of staff and young carers in Respect young carers' expertise, informed
planning, data collection, and analysis. consent, power dynamics, and balance
involvement with ethical guidelines.
EVIDENCE BASED RESEARCHES
Real world experienes
Understanding the lived
experiences of young caregivers
providing care to children with
SEND is a central focus.
This understanding challenges
deterministic viewpoints,
fostering empathy and advocacy
skills among students (Trott,
2021).
Researching and working
Involving young people
actively in research,
decisionmaking, and actions
is fundamental (Leu et al.,
2023).
Utilizing young people's
distinct perspectives and
experiences enhances the
relevance and effectiveness
of treatments (Hanson et al.,
2022).
Skills required
Active listening, empathy,
and cultural sensitivity are
necessary for
comprehending young
people's experiences (Dixon,
Ward, and Blower, 2019).
Engaging young people
enables them to participate
in the development of
solutions that have an
impact on their lives (Cuevas-
Parra, 2020).
 INTRODUCTION
Young carers integrate their caregiving job with education, personal development, and other family obligations in addition to
managing the everyday needs of children with SEND. The concepts of participatory action research (PAR), which emphasizes
including participants in decision-making processes relevant to their lives and well-being, are consistent with the empowerment of
young carers through research engagement (Rogers et al., (2021).
This proposed study aims to gather nuanced understandings into young carers' experiences, difficulties, and assistance requirements. The
tailored interventions and resources that result from this evidence-based approach will better address the special caregiving needs
imposed on young carers supporting children with SEND.
We would cooperate with pertinent organizations, institutions of higher learning, and support networks that focus on providing
services for young carers in order to approach and actively engage the young caregiver population. The use of youth-friendly
communication methods and the creation of a welcoming environment for open discussion are essential. It is crucial to comprehend
their particular struggles and goals by empathically listening to them and codesigning the study with their involvement.
Existing data in England show a lack of comprehensive support for young carers. Although resources are available, they frequently are
unable to satisfy their unique needs, particularly in the areas of specialized educational support, mental health care, and respite care.
If used, our research proposal would close this gap by actively incorporating young carers in the investigation. The plan intends to
empower young carers, improve support services, and eventually improve their general well-being and caring experiences by co-
creating tailored support strategies and advocating for their needs.
PARTICIPATORY APPROACHES TO
IMPROVE PEOPLE’S LIVES
Hall, Gaved, and Sargent, (2021), state that by including young people in making decisions, planning,
and carrying out actions that have a direct bearing on their life, participatory techniques empower
them. Through this involvement, solutions that meet their needs and objectives are promoted,
fostering a sense of ownership, selfefficacy, and inclusivity. It switches from a top-down approach
to collaborative approaches, values the opinions and knowledge of young people, and ultimately
improves the relevance and efficiency of interventions meant to better their lives.
Evidence suggests that community well-being is considerably increased by participatory methods.
Ginis et al., (2021) study demonstrates their effectiveness in health promotion. Participating in
planning and decision-making with the community not only effectively solves local health issues but
also empowers people, resulting in long-lasting benefits in general health and quality of life.
KEY ETHICAL CONSIDERATIONS IN
WORKING WITH YOUNG PEOPLE
Being ethically vigilant is essential when working with young people. The importance of informed consent and
assent in ensuring that young people are aware of the goals, dangers, and advantages of participating in any
research, program, or intervention cannot be overstated (Townsend et al., 2020). Respecting autonomy entails
giving children age-appropriate information and letting them make decisions in line with their knowledge and
ability. Furthermore, strict adherence to confidentiality and privacy must be made in order to protect the
private information supplied by children and foster a climate of trust. It takes ongoing awareness to maintain
the delicate ethical balance between the protection of their well-being and the potential advantages of the
research or intervention (Cuevas-Parra, 2020).
Respecting diversity and inclusivity is also essential. It is crucial to acknowledge and value the various
backgrounds, cultures, viewpoints, and identities of young people in order to prevent the perpetuation of
prejudice and inequality (Hall, Gaved, and Sargent, 2021). To guarantee that the rights and dignity of every
young person are protected throughout the study or intervention process, it is essential to act in an inclusive,
non-discriminatory, and culturally sensitive manner. Beyond the research or program, ethical principles call for a
dedication to the long-term welfare, support, and empowerment of young people even after the initiative is
finished (Townsend et al., 2020).
Process Collaboration/participation questions
Research design, Who will plan/design the research?
development and (Think about whether YP will be fully
planning involved or perhaps involved in an
advisory capacity)
What is/are the research question(s) or
topics and who will decide on these?
Is this a collaborative process?
How will the children/YP be supported to
develop the skills needed for their roles?
Answer
Young caregivers who support children with
SEND will collaborate on the planning and design
of the research. They will actively participate in
directing the investigation, contributing their
viewpoints, ideas, and recommendations all
along the way. It is important to make sure that
their needs and experiences are accurately
reflected in the research and that their
perspectives are heard.
Research question: How can young caregivers
who support children with Special Educational
Needs and Disabilities (SEND) be empowered by
a participatory research approach to enhance
their caregiving experiences and promote
improved support services?
Yes, a collaborative approach incorporating
young carers supporting children with SEND is
required by the research question. It places a
focus on actively contributing and jointly creating
knowledge and solutions.
Through focused seminars and training sessions,
children and young people will receive help in
order to improve their caring abilities and
knowledge.
Ethical issue
Greenhalgh et al., (2021), state that the moral concern in
this situation is ensuring that young caretakers are truly
and meaningfully included in the research's planning
and design. Tokenism or shallow involvement, in which
young caretakers are just engaged in an advisory role
without significantly influencing decision-making, must
be avoided. The research method should be governed by
genuine empowerment and collaboration, respecting
their agency and contributions. Maintaining a balance
between their active participation and consideration of
moral standards and their well-being is crucial
Townsend et al., (2020), state that ensuring sincere
partnership is the main ethical concern. In order to
respect young carers' perspectives and ensure that their
significant contributions inform the study process, it is
critical to avoid superficial engagement and tokenism. To
maintain the quality and significance of the research, it
is crucial to strike a balance between their active
participation and ethical issues.
Cuevas-Parra, (2020), state that the ethical concern
centers on assuring the suitability and efficacy of the
assistance offered. The support must be specifically
tailored to each person's needs, taking into account their
age, cognitive capacity, and individual situation, but also
respecting their autonomy and preferred methods of

Data generation How will you generate data (data
collection methods)?
Who will collect the data?
Who will be the participants?
How will you find your participants?
The research process will actively involve young
carers in gathering data through participatory
approaches such focus groups, interviews, and
artistic expressions.
Data will be gathered under the supervision of
qualified researchers and, where necessary,
young carers themselves.
The participants will be young caregivers who are
in charge of providing special educational needs
and disabilities (SEND) care for young children.
Participants will be found via working with
support groups and educational institutions, as
well as by asking for recommendations from
dependable locals.
skill development. It's crucial to strike the correct
balance between direction and independence.
Sheikh et al., (2021), state that ensuring informed
consent, data protection, and a secure, welcoming
atmosphere during data gathering is the ethical concern.
To uphold ethical integrity throughout the research, it is
essential to respect the autonomy and wellbeing of
young carers while gathering data.
Hensen et al., (2021), state that ensuring confidentiality
and informed consent during data collecting is the
ethical dilemma. When young caretakers are
participating in the process, it is especially important to
protect their privacy and general wellbeing. It is crucial
to uphold moral norms and trust throughout the data
collection process.
The ethical dilemma is how to ensure that
participants' rights and well-being are upheld while
also receiving their informed permission. It is critical
to respect their autonomy and particular situation
while taking into account their ability to give
permission. Additionally, it is crucial to retain
confidentiality and protect their privacy during the
entire research process (Ashley, 2019).
Informed consent, voluntary engagement, and
privacy are the main ethical concerns. It's crucial to
get consent from potential participants and make
sure they understand the study's goals and their
part in them. Important ethical considerations
during recruitment include respecting their privacy
and protecting confidentiality (Hall, Gaved, and
Sargent, 2021).
Data analysis Who will be involved in analysing data? If Trained researchers will be largely responsible for
YP are to be involved how will this be data analysis. In the event that youth (YP) are
done? involved, they will take part in organized
workshops and sessions to share their
perspectives, which will be incorporated into the
analysis.
Dissemination and How might you disseminate your In order to ensure accessibility and effect,
reporting research? research dissemination will include scholarly
publications, community presentations, and
policy briefs.
It is important to respect young people's (YP)
capacities and cognitive levels while incorporating
them in data processing. By offering suitable
direction and organized sessions, you can protect
their interests while preserving the validity and
accuracy of the analysis. The two most important
ethical considerations are consent and process
knowledge (Stephenson et al., 2021).
The ethical consideration is making sure that the
dissemination strategies respect the participants'
privacy and consent. To uphold integrity and
prevent distortion, it is crucial to report the
research findings in a clear and correct manner. To
ensure greater accessibility, it is also morally
responsible to present information in a
comprehensible style (Rogers et al., 2021)

Who will be involved and how?
Planning, data gathering, and analysis will be
done in collaboration with young carers.
Workshops and scheduled sessions will involve
young caregivers.
It is crucial to respect young carers' viewpoints and
knowledge while ensuring their meaningful
involvement. Obtaining informed permission,
dealing with power relations, and promoting an
inclusive environment that supports their active and
voluntary engagement are all ethical considerations.
The issue is to strike a balance between their
participation and the goals of the research and
ethical standards (Nooteboom et al., 2021)
METHODLOGY
Participatory Approach: Young caregivers should be actively involved in all phases of the research, including its design,
data collecting, analysis, and dissemination.
Focus Groups and Interviews: Hold focus group discussions and conduct one-onone interviews with young carers to
learn more about their perspectives and experiences. This will help us better understan d their role as caregivers and
the particular difficulties they encounter.
Needs Assessment: Identify the various requirements of young carers in regard to their responsibility to provide care for
children with SEND. This will enable customizing support and intervention techniques.
Collaborative Analysis Workshops: Hold workshops with young caregivers to analyze data together while enlisting their
help in understanding the results and developing recommendations.
Development of Resources: To better support young carers, co-create instructional materials and resources based on
research.
Awareness and Advocacy: Promote policy reforms and greater awareness by involving young carers in advocacy in
order to enhance the overall support systems for both young carers and children with SEND.
Ethical Considerations: Throughout the research process, ensure the privacy, informed consent, and wellbeing of
young carers while being mindful of their particular needs.
(Bevan Jones et al., 2020).
 REAL-WORLD EXPERIENCES
The focus of this proposal is on comprehending the real-world experiences that young caregivers have when providing care for kids with
SEND. Trott, (2021), challenged deterministic viewpoints, foster empathy, and equip students to speak up for the rights and agency of young
people in a variety of situations by implementing participatory research methodologies and activities. Hence, the focus of the unit is an
epistemological foundation, which is explored together with research, comprehension, and intervention approaches that support children's
agency and rights.
The necessity of taking young caregivers' lived experiences into account when supporting children with Special
Educational Needs and Disabilities (SEND) has been highlighted by recent studies. According to a study by Vaughn, and Jacquez, (2020),
effective interventions and assistance depend on a knowledge of the daily struggles and reality that young carers confront. In addition,
participatory research techniques, as described in a study by Cumbo, and Selwyn, (2022), allow young caregivers to actively participate in
research procedures, offering special insights on their caregiving roles and needs. While promoting the rights and agency of young carers
and children with SEND, these participatory approaches challenge deterministic viewpoints and enable students to grow in empathy.
The need of incorporating young people's actual realities and experiences into educational techniques is emphasized by empirical research.
Understanding the particular contexts in which young people navigate their lives, including their social and cultural backgrounds, has a
significant impact on both their educational experiences and outcomes, according to studies (Trott, 2021; Cumbo, and Selwyn, 2022).
By acknowledging the uniqueness of each young person's experience, these viewpoints challenge deterministic approaches and advance an
inclusive, compassionate learning environment. Farič et al., (2019) research, which supports participatory techniques, shows that giving
young people a voice in research allows them to express their experiences, worries, and wants. This strengthens their advocacy position and
improves intervention strategies.
 RESEARCHING AND WORKING WITH
YOUNG
PEOPLE AND THEIR IMPACT
Leu et al., (2023), state that involving young people actively in the research process, decision-making, and actions that have an impact on their life is a key
component of participatory approaches to research and working with young people. As a result, their viewpoints, needs, and experiences are taken into account
and valued. It promotes teamwork, participation, and the codevelopment of solutions. It's crucial to comprehend how these strategies affect things.

By utilizing the distinct perspectives and experience of young people, they increase the relevance and effectiveness of treatments. Involving young people in
decision-making produces better informed and successful results while fostering a sense of ownership and responsibility, according to research by Hanson et al.,
(2022). In addition, Rogers et al., (2021) highlights the many levels of participation and underlines the need to move past symbolic engagement and toward
meaningful cooperation with young people.

Evidence highlighting the benefits of participatory approaches to research and working with young people supports these methods. Pellicano, and den Houting,
(2022) study clarifies the idea of "participation rights," contending that integrating young people in decision-making promotes their development and social
integration.

The United Nations Convention on the Rights of the Child is expanded upon by research by Tembo et al., (2021), highlighting the right of young people to express
their opinions and have those opinions taken into consideration when making decisions that affect them. This strategy, which reflects a fundamental movement
toward more equitable and inclusive practices, has been found to improve the quality and relevance of services and policies that are directed at young people.
In general, participatory methods result in outcomes that are more powerful, inclusive, and long-lasting in young people's lives.
 YOUNG PEOPLE’S EXPERIENCES AND THE SKILLS
REQUIRED TO BE AN ADVOCATE FOR
THEM
Active listening, empathy, and cultural sensitivity are necessary for comprehending young people's experiences. Understanding the
complexity of their lives necessitates taking into account their different histories, identities, and settings. It is critical to have a
thorough grasp of the difficulties people confront in social, educational, and mental health contexts. In order to properly advocate for
them, it is essential to have this understanding (Dixon, Ward, and Blower, 2019).
One needs effective communication abilities, the capacity to work with many stakeholders, and a dedication to the welfare of young
people in order to be an advocate for them. Advocacy calls for the ability to persuasively and respectfully communicate the opinions,
needs, and aspirations of young people while promoting laws and practices that will benefit them (Pulimeno et al., 2020). Engaging
young people directly in the process of developing participatory answers enables them to participate in the development of solutions
that have an impact on their lives. In order to co-create solutions that solve their particular difficulties and improve their overall
experiences, it is necessary to build a trusting environment, involve them in decision-making, and value their contribution (Cuevas-
Parra, 2020).
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