Participatory Action Research Study Research Articles

CN108 - Engaging cancer survivors, healthcare providers and advocates in the development of a colorectal cancer survivorship information resource: A participatory action research study

BackgroundUp to three-quarters of colorectal cancer (CRC), survivors may experience one or more physical, psychological or social issues after treatment. Individuals with a cancer diagnosis report appropriate support and information from healthcare professionals during treatment. However, many are unprepared for the chronic effects of cancer and its treatment and lack the resources to devise self-management skills. This study aims to design and develop an evidence-based Cancer Survivorship Information Resource (CSIR) to support the education of people with CRC about potential survivorship issues. MethodsThe CSIR is being developed with key stakeholders via a three-phase participatory action research (PAR) approach. In Phase 1, chronic effects of CRC were explored in a mixed methods study (n=304). In Phase 2, a 3-round modified Delphi was undertaken with key stakeholders, including CRC survivors, healthcare professionals and advocates to gain consensus on topics to be included in the CSIR (n=36). Phase 3 will focus on the design, development and evaluation of the CSIR. ResultsIn phase 1, CRC survivors reported symptoms including sexual dysfunction (66%), fatigue (64%), bowel dysfunction (57%) and fear of recurrence (60%). Seventeen survivorship information topics were identified in Phase 1; six further topics were proposed by Phase 2 participants. Seventeen items achieved agreement (≥80%) for inclusion in the CSIR, including fatigue, bowel function, sexual function, coping, and returning to work. ConclusionsStakeholder consensus and engagement has the potential to effect sustainable change and innovation in practice. Phase 2 participants will be engaged in Phase 3 to develop and evaluate the content of the CSIR. PAR methodology facilitates the development of interventions which are person-centred and appropriate to the stage of treatment. Once developed, the CSIR will form part of a larger complex intervention, which aims to address the unmet information and supportive care needs of cancer survivors; supporting them to develop self-management skills to cope with the chronic effects of CRC and its treatment. Legal entity responsible for the studyTrinity College Dublin. FundingThe Health Research Board Research Training Fellowship for Healthcare Professionals (Grant#: HPF.2014.715). DisclosureAll authors have declared no conflicts of interest.

Therapeutic Effects of Participatory Action Research for Veterans and Caregivers Living With Brain Injury

Explore Veterans’ and informal caregivers’ perceptions regarding therapeutic effects of participation in a participatory action research (PAR) study focused on community reintegration after brain injury.

Co-producing and navigating consent in participatory research with young people

Purpose Research within the fields of youth sexuality and safeguarding, and ethical governance more broadly, has traditionally prioritised risk aversion over the rights of young people to participate in and shape research. This excludes younger people from setting agendas and directly communicating their lived experience to those in power. The paper aims to discuss these issues. Design/methodology/approach This paper describes and draws upon findings from an innovative two year participatory action research study exploring sexual consent with young people through embedded and participatory research across seven sites. The project was designed with young people and practised non-traditional approaches to research consent. As well as co-producing research data, the findings highlight how methods of co-enquiry and being explicit about the research consent process enabled young people to develop competence that can be applied in other contexts. Findings The paper addresses ethical tensions between young people’s rights to participation and protection. It argues that alongside robust safeguarding procedures, there is equal need to develop robust participation and engagement strategies with an explicit focus on young people’s competence, agency and rights to participate regardless of the perceived sensitivity of the topic. Originality/value The paper concludes with proposals for future youth-centred research practice. These relate to research design, ethical governance processes around risk and sensitive topics, emphasis on working collaboratively with young people and practitioners, a greater focus on children and young people’s rights – including Gillick competence and fluid models of consent. In doing so, it presents an essential point of reference for those seeking to co-produce research with young people in the UK and beyond.

Towards an understanding of ‘school’ readiness: collective interpretations and priorities

ABSTRACT This participatory action research study examined participants developing conceptual understanding of ‘school readiness‘ to enhance the learning and well-being of young children as they progress through children’s services. We worked collaboratively with early childhood educators, from a range of provision such as Private Voluntary Independent early childhood and care settings (PVIs), children’s centres and schools in Knowsley Local Authority, who were interested in researching their own practice individually and collectively. We provide insight into the trusting, collaborative inquiry workshops that enabled participants to engage in a process of reflexivity, so they became more aware and critical of their own practice and were more open to a process of change. Collective priorities from different perspectives were identified for improving young children’s transitions. The findings indicate a new appreciation for starting with the child’s readiness for learning, alongside the need for more connections and continuity between providers and families of birth to 3 and 3-5 age ranges. Support for the home learning environment was found to be essential in supporting parents recognise their potential as the child’s first educators. Participants applied their action research learning experience to inform a more open and respectful appreciation of other perspectives in daily collaborations with stakeholders.

Supporting positive sexual health for persons with developmental disabilities: Stories about the right to love

Accessible Summary This research is about the sexual rights of persons with developmental disabilities. For 12 months, nine adults with developmental disabilities and three allies created videos about love and intimacy. The group found that family members, caregivers and support workers can make it hard for people with developmental disabilities to learn about and experience healthy relationships. This research is important because it promotes the experiences and perspectives of persons with developmental disabilities, which can hopefully lead to positive changes in attitudes and service delivery that support positive sexual health. AbstractBackgroundAlthough sexual rights are human rights, persons with developmental disabilities are often excluded from developing positive sexual health due to societal attitudes, stigma, a lack of education and limited opportunities.MethodsAs a part of a 12‐month participatory action research study in a western Canadian province, nine adults with developmental disabilities and three allies created videos that explored the dimensions of sexual health as experienced by people with developmental disabilities. Participants were involved in all stages of the filming process. The filming topics identified by the participants emerged as the core research themes.ResultsPersons with developmental disabilities often have limited opportunities to develop and nurture intimate relationships. Participants also identified that: (a) a lack of support from caregivers, (b) a lack of education about sexual health, (c) ableist spaces and (d) the absence of agency policies that acknowledge and protect sexual rights create further obstacles.ConclusionsInclusive practices where the sexual rights of persons with developmental disabilities are respected and celebrated are critical in promoting positive sexual health. For many agencies, this requires reframing policies and programmes that include acknowledging and protecting the sexual rights of persons with developmental disabilities. While providing accessible pedagogical opportunities about sexual health was identified as important, ensuring curriculum delivery for support workers, as well as educating families and caregivers about the importance of sexual health and inclusion, is paramount, where the views and opinions of persons with developmental disabilities are at the forefront of the process.

Through space into the flesh: Mapping inscriptions of anti-black racist and ableist schooling on young people’s bodies

This article responds to the deadly consequences of the ongoing anti-Black racist and ableist educational settings in the United States, including the continuous historical trauma they create in the lives of targeted youth (dis/abled, Black, non-white, gender-variant, poor, immigrant). By way of sampling individual body maps of a New York City-based youth participatory action research study (YPAR), the author frames socially constituted impairments to describe the chronic violence caused by anti-Black racism and ableism. Grounded in critical disability and embodiment studies, the author applies an “ocular ethic” framework to this YPAR study to name some of the injurious effects that pervasive anti-Black racist and ableist schooling practices have on the lives and bodies of Black students. Informed by youth-driven visions of fugitivity, the author argues that critical body mapping disrupts ongoing anti-Black racist and ableist narratives about racialized youth that continue to frame them as helpless, immobilized, and insensate.

Strengthening the Capacity of Education Staff to Support the Wellbeing of Indigenous Students in Boarding Schools: A Participatory Action Research Study

In meeting the social and emotional learning (SEL) needs of Aboriginal and Torres Strait Islander students, the capacities of school staff are critical. There is very limited evidence for relevant capacity development initiatives. This evaluation reports a multicomponent SEL training intervention delivered to staff of an Australian education service that operates independently of any particular school to assist with the transitions of students from remote communities to boarding schools. A participatory action research (PAR) approach was implemented over 13-months with 21 staff participants. Results from a pre-, mid- and six months post-training survey and staff interviews were analysed and fed back through reflective group discussions. The training was associated with improved staff attitudes to mental health and skills to support student wellbeing. Sixteen participants received a tertiary qualification. Despite ‘working in challenging environments’, staff were ‘dedicated to help’ students, and ‘acknowledged the need for change’ to better support student wellbeing. However, given the service's brokering role between families and schools, fewer staff members reported feeling empowered to influence issues in their workplace. The evaluation demonstrated the value of SEL training for education staff and potential utility for school teachers and boarding staff who have direct duty of care for Indigenous students. The multicomponent training described in this study would need to be condensed for school settings.

An important, but neglected aspect of learning assistance in higher education: Exploring the digital learning capacity of academic language and learning practitioners

Digital literacy has become increasingly significant in tertiary environments, as institutions move towards preparing students for 21st century workplaces and careers that emphasise digital literacy. As such, Academic Language and Learning (ALL) practitioners within these institutions are under pressure to possess familiarity and skills in the digital education space. Despite this need, there is a shortage of evidence that identifies the competencies or gaps in the current knowledge that ALL advisors have in Australian tertiary institutions; there is also a lack of awareness about how to address the gaps in knowledge for technology-enhanced learning and academic support. In light of this lacuna, in late 2018, the Association for Academic Learning and Language (AALL), the professional body for Academic Language and Learning practitioners, established a working group to investigate the knowledge and gaps in digital literacy in the ALL profession. The authors of this paper are all members of this working group and aim to explore the state of digital learning in their field. The long-term aim of the working party is to develop research-led resources and strategies to assist in the professionalisation and upskilling of ALL staff in technology-enhanced academic language development and support. This paper reports on the preliminary findings of a mixed-method participatory action research study of ALL practitioners’ preferences, competencies and confidence in the digital learning space. It is hoped that this study will provide members within the AALL professional body, as well as tertiary educators generally, with strategies required to identify, develop and maintain effective digital literacies across the higher education sector.

Enhancing Participation of First-year Education Students: Focusing on Life Circumstances

This paper reports on a participatory action research study that investigated the life circumstance associated with first-year education students who displayed limited participation with their study activities within a regional university. The life circumstance presented in this paper include first in family, age, socio-economic status, living away from home and work commitments. Research data include a business analytics program of the students’ records, research literature, and the experiences of the College Student Support Officer (CSSO). The four-phase analysis reflected on the prevalence of the life circumstances with the students who displayed limited participation and who received support from the CSSO. The paper discusses the support strategies employed by the CSSO and others support structures that may be required. The study concluded that the life circumstances associated with most first-year students who displayed limited participation can overlap and compound negatively to affect the students’ ability to complete their studies successfully.

“Fallen Between the Cracks”: Exploring Subsidized Housing From the Perspectives of Low-Income Preseniors

Older adults aged 55 to 64 are vulnerable to housing insecurity and homelessness due to complex, interacting factors including decreasing options for employment, poor health, changing life circumstances, and ineligibility for seniors’ benefits or seniors’ subsidized housing. Despite the vulnerability of low-income preseniors, few researchers have examined the housing experiences of this population. This participatory action research study was guided by an advisory committee (n = 11) comprised of individuals with lived experiences of homelessness and service providers. We conducted in-depth, qualitative individual interviews with low-income preseniors (n = 30), who experienced housing insecurity or homelessness, to better understand their unique challenges and barriers to obtaining affordable, safe and suitable housing. Low-income preseniors (n = 6), who had direct experience with housing insecurity or homelessness, collaborated with the data analysis process. The constant comparative method was used to identify themes related to: (1) risk factors for homelessness, (2) barriers in securing housing, (3) characteristics of desirable and undesirable housing, and (4) the importance of advocacy in addressing the complex challenges they encounter. Study findings also highlighted the influence of contextual and structural factors that contribute to the preseniors’ quality of life, health, and well-being as they age. Recommendations are provided to inform subsidized housing practices, policies, and services targeted at meeting the unique needs of this population.

A Community-Based Participatory Approach to Understanding HIV/AIDS in the Ethiopian Community

ABSTRACTThe rate of HIV/AIDS in Washington, D.C remains at epidemic levels and is most prevalent in the black community, with foreign-born blacks accounting for an increasing proportion of HIV infections in the Washington DC area. The Ethiopian community is among the subgroups that are especially impacted by HIV/AIDS. Yet, seldom does research on the epidemiology of HIV/AIDS break data into diverse subgroups, accounting for the distinct needs based on cultural or ethnic differences. This paper reports on the qualitative findings from a community participatory action research study that involved interviewing 60 Ethiopian-immigrants and nine community-based providers about their attitudes toward HIV/AIDS, and to elicit their ideas about how to improve HIV/AIDS prevention, promotion, and treatment approaches targeting the Ethiopian community. Findings show that stigma remains the largest barrier to accessing HIV/AIDS treatment among Ethiopians in the Washington, D.C. area. Therefore, strategies to reduce HIV/AIDS must address stigmatizing beliefs and be met with cultural sensitivity when developing community prevention and treatment outreach programs designed to reduce HIV/AIDS among Ethiopians.

Uncovering the Public/Private Dilemma for Rural Youth Using Participatory Action Research

While the rural youth identity is an intersectional experience that creates a heterogeneous group of young people, a close exploration of a specific rural location can illuminate an experience that is both unique and shared. In this participatory action research study, a group of youth participated in one-on-one interviews and focus group discussions to describe their experience of their rural location. Reports, statistics, and youth counsellors also provided information about the local youth experience. What emerged was a consideration of the unique divide between public and private social realms that can create a dilemma for youth who are simultaneously encouraged to succeed in public life while provided with limited access to opportunities in that public life. The research project culminated in a sculpture created by a team of youth artists that incorporated the final analysis about the public/private divide. The sculpture is now a permanent display in the region.

Healing the Past by Nurturing the Future—co-designing perinatal strategies for Aboriginal and Torres Strait Islander parents experiencing complex trauma: framework and protocol for a community-based participatory action research study

IntroductionChild maltreatment and other traumatic events can have serious long-term physical, social and emotional effects, including a cluster of distress symptoms recognised as ‘complex trauma’. Aboriginal and Torres Strait Islander...

Co-Designing an Intervention to Increase HIV Testing Uptake with Women from Indonesia At-Risk of HIV: Protocol for a Participatory Action Research Study.

Early diagnosis is a critical component of the global response to the human immunodeficiency virus (HIV). In Australia, more than two-thirds of women from Southeast Asia are diagnosed late with HIV. There is limited evidence regarding the barriers to HIV testing and which interventions work to increase an uptake among migrants living in high-income countries. This participatory action research (PAR) project will work with women from Indonesia to co-design an intervention to increase HIV testing uptake in Western Australia. The project will involve trained community researchers, representatives from relevant organizations, and community women born in Indonesia. We will conduct three PAR cycles. Phase one will use focus groups to understand enablers for HIV testing among community members. In phase two, data will be presented back to members of the participating communities who will be invited to co-design an intervention to increase HIV testing. The final cycle will focus on implementing and evaluating the resulting intervention. This project will add to the small body of literature on pathways and enablers to HIV testing, and to new insights regarding interventions that work for women from migrant communities and why.

Researching at the community-university borderlands: Using public science to study policing in the South Bronx

This article is a case study of the Morris Justice Project (MJP), a participatory action research (PAR) study in a South Bronx neighborhood of New York City (NYC) designed to understand residents’ experiences with and attitudes towards the New York Police Department (NYPD). An illustration of public science, the research was conducted in solidarity with an emerging police reform movement and in response to an ongoing and particularly aggressive set of policing policies that most heavily impacts poor communities and communities of color. The case study describes a set of ongoing participatory, research-action, “sidewalk science” strategies, developed in 42 square blocks of the South Bronx, designed to better understand and challenge the ongoing structural violence of the carceral state. Collaboratively written with members of the Morris Justice collective, we tell our story across three sections that outline the genesis of the project, describe our major commitments, and offers PAR and public science as a possible “intervention” in traditional university practice.

Using two models of workplace facilitation to create conditions for development of a person-centred culture: A participatory action research study.

To examine facilitation in workplace learning where nurses are focused on creating person-centred cultures; to provide a framework for novice and proficient facilitators/practitioners to learn in and from their own workplaces and practices; and to provide the conditions where practitioners can gain an understanding of the culture and context within their own workplace. Evidence suggests that person-centred cultures depend on purposeful, facilitated practice-based learning activities. For person-centredness to become more meaningful to nursing leaders in their daily work, focus must be placed on their acquisition and use of facilitation skills. The facilitation framework "Critical Companionship" remains an exemplar in the development of expert facilitation skills. Two sequential facilitation models were developed as "steps" towards Critical Companionship, as a framework for novice and proficient facilitators and practitioners to learn in and from their own workplaces and practices. This research, situated in a critical social science paradigm, drew on participatory action research to devise, explore and refine two facilitation models: Critical Allies and Critical Friends. The researcher adopted an insider approach to work with five nursing leaders, which was subsequently reported using the EQUATOR guidelines on best practice in reporting of participatory action research. The results show the complexity of enabling facilitation within the workplace. Four themes and twelve subthemes emerged from the data that describe the attributes needed to facilitate workplace learning and reveal that managers can have an active role in enabling person-centred culture development. This research adds to the body of knowledge on developing person-centred culture. It offers practical stepping stones for novice and proficient facilitators to enable embodiment of the skills necessary to facilitate learning in person-centredcultures. The models offer a workplace-friendly pathway with practical methods and further contribute to our understanding of how we create person-centred cultures. Facilitation of practice development and workplace learning remains the most effective methods to develop person-centred cultures. This research introduces a pathway for clinical leaders/managers to become facilitators with their own teams, maximising the impact on the culture where care is delivered.

A Participatory Action Research study on the impact of Peer Assisted Student Support (PASS) and Supplemental Instruction (SI) by international PhD students

Using a Participatory Action Research (PAR) approach, this evaluative research study gives an insight into the implementation of a pilot study of a newly implemented Peer Assisted Student Support (PASS) and Supplemental Instruction (SI) Programme. The focus of the study involved six postgraduate PhD students delivering a PASS/SI scheme to cohorts of MSc Public Health, MSc Nursing and MSc Psychosis and Complex Mental Health Interventions students, all undertaking their final dissertations.The study was used to illuminate the degree to which PASS and SI were perceived to impact on the overall student experience as part of a quality enhancement initiative. Findings of the study revealed that the programme had positively impacted on both PASS/SI leaders and participants of the scheme, who reported increased confidence and an increased sense of social inclusion and belonging to the institution respectively. Being facilitated by students who had experienced the same academic pathway was perceived to have widened networking opportunities and to have positively impacted on the capacity of the participants and leaders to build relationships and prepare skills of direct relevance to the requirements of an employer such as teamwork and initiative.

Using urban woodlands and forests as places for improving the mental well-being of people with dementia

ABSTRACTThis study investigates the meaning and use of urban woodlands and forests, and how they can contribute to positive mental well-being of people with dementia, by adopting ethnographic, participatory action research and case study approaches. Qualitative research provided knowledge and understanding about how activities in an urban woodland environment can add value to and benefit the lives of people with dementia living independently. Data were collected from semi-structured, and walk-along interviews, as well as from piloting a programme of activities based in an urban woodland setting . Five male participants with dementia, aged between 52 and 83, and one family carer, took part in the pilot programme, based in Scotland (UK). The findings show how through active use of urban woodlands and forests, people with dementia find their experiences to be meaningful. People with dementia found meaning in the multi-sensory experience of the woodland, in their feeling of self-worth, and in their ability to retain a sense of autonomy and identity. The approach to active use of urban woodlands and forests offers a viable alternative to traditional residential and day care activities, as well as an opportunity to promote the quality of life of people with dementia living in their own homes.

Taking about self-harm: improving consultations between nurses and young people

This participatory action research study explored why young people present with self-harm in primary care and how consultations could be more helpful. Twenty focus groups with young people, GPs and practice nurses were undertaken, plus analysis of 285 young people’s medical records with self-harm coding (205 female, 80 male) from three general practices.

The transformative and emancipatory potential of participatory evaluation: reflections from a participatory action research study with war-affected young mothers

ABSTRACTThe Participatory Action Research (PAR) study with Young Mothers in Liberia, Sierra Leone and northern Uganda which took place from 2006 to 2009 aimed to understand what ‘reintegration’ meant to young mothers formerly associated with armed groups. It also implemented social action initiatives designed by study participants to promote their wellbeing and achieve reintegration. We evaluated the study using multiple participatory evaluation methods, situating evaluation as part of the cycle of research and action. This approach facilitated young mothers’ participation in developing the criteria by which the study and its reintegration outcomes would be judged. We describe each method and what we uniquely learned from using a participatory evaluation approach. We discuss how this approach is well-suited for complex studies, can enhance data quality, increases capacity of all involved in the evaluation and supports the critical reflexivity necessary for participatory studies to succeed.