Advocacy Agencies Research Articles

Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations

PurposePeople with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer.MethodsAn expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process.ResultsA systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations.ConclusionStandards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.

Survivorship Care for People Affected by Advanced or Metastatic Cancer: MASCC-ASCO Standards and Practice Recommendations.

People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared with those with early-stage disease or those nearing the end of life. These Multinational Association for Supportive Care in Cancer (MASCC)-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. A MASCC-ASCO expert panel was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including eight people with lived experience) across 33 countries (33% were low- to middle-resource countries) participated in the Delphi study and achieved ≥94.8% agreement for seven standards, (1) Person-Centered Care; (2) Coordinated and Integrated Care; (3) Evidence-Based and Comprehensive Care; (4) Evaluated and Communicated Care; (5) Accessible and Equitable Care; (6) Sustainable and Resourced Care; and (7) Research and Data-Driven Care, and ≥84.2% agreement across 45 practice recommendations. Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards support optimization of health outcomes and care experiences by providing guidance to stakeholders (health care professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers). Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.Additional information is available at www.mascc.org, www.asco.org/standards and www.asco.org/survivorship-guidelines.

PERAN PUBLIK RELATIONS DALAM ISU DAN KRISIS PT. PERTAMINA (PERSERO)

Crises that hit a company always come unplanned. Therefore a company must have competent public relations practitioners. Which if there is a crisis the company will be ready to handle and resolve it as well as crisis prevention measures for the company. In this study, the authors used qualitative research methods with descriptive research types. This type of descriptive research is research that uses methods by describing a result of the research. The aim is to provide an explanation, and validation of the phenomena that occur in the field. To overcome a crisis and issue that must be done by a PR in a company is to introduce and validate a penetration in the design and practice of corporate management with the aim to at least manage corporate public issues as well or even better than the traditional management of operations that only think about profit. just. Issues management is applied both opportunistically and offensively, evolving from being a reactive crisis prevention tool to maintaining a strategic management discipline. Attention from stakeholders and other interested public- advocacy organizations, non-governmental organizations, government departments and agencies, news media and opinion leaders is bringing these issues onto the public agenda. Issues management strategies and tactics have long been tools of organized labour, governments and even activists, not just corporations.

Lethality assessment protocol: Challenges and barriers of implementation for domestic violence victim advocates

This exploratory qualitative research study examined the attitudes and barriers domestic violence victim advocates identified in successful implementation of the lethality assessment protocol, a collaborative intervention between police departments and domestic violence advocacy agencies in the state of Connecticut. Focus groups were conducted at four domestic violence agencies to ascertain advocates’ perceptions of the lethality assessment protocol. Advocates (N = 24) were recruited through an individual contact at each agency. Responses to focus group questions indicated both system-wide and individual agency and police department collaboration barriers. Results showed advocates generally support the protocol and believe it has beneficial intent and purpose. Challenges identified included lack of victim cooperation, variations in law enforcement officer attitude, and deficiencies in training. Implementation barriers and advocates’ attitudes are also discussed. Lethality assessment protocol is a useful tool, yet all stakeholders must actively engage in cooperative training, tackle personal biases toward domestic violence victims, and gain a better understanding of victim psychology.

Roles of Urban Green Spaces for Children in High-Density Metropolitan Areas during Pandemics: A Systematic Literature Review

For children living in one of the 30 megacities around the world, green spaces may be far away or tokenistic, with growing accounts of youth exhibiting a variety of nature deficit disorders. Amidst increasing pressure for more high-density metropolitan areas (HDMAs), international advocacy agencies are calling for policy makers and service providers to ensure good quality urban green spaces (UGSs) for all children. Furthermore, these green spaces need to be purposefully designed to cater to children’s needs, which continue to evolve amidst extreme weather such as heat waves. Recently, pandemics have placed additional constraints on how far children can travel and their time spent outdoors, making the quality of this experience for children even more important. This systematic literature review explored the roles of HDMA-UGSs for children during pandemics. From 551 studies retrieved and curated using the PRISMA methodology, 40 papers were subsequently thematically analysed. Four roles were synthesised for HDMA-UGSs in supporting children’s experiences during pandemics, which also benefit children during ‘normal’ day-to-day life’: (1) sustaining growth and development, (2) bridging social stratifications, (3) encouraging self-agency, and (4) facilitating independent mobility. Thirteen principles were distilled to support decision making in enabling these outcomes in new-build and refurbishment projects. The results are of immediate use for decision makers who are responsible for HDMA-UGS planning, procurement, installation, and maintenance. The UGS role descriptions enable targeted design interventions for supporting children’s health and well-being, including during times of constrained outdoor time.

Cross-Sectional Survey of Public Perception of Commercial Greyhound Racing in New Zealand.

The commercial greyhound racing industry in New Zealand is struggling with an eroding social license and 'on-notice' status. Multiple independent reviews of the industry have identified ongoing issues of animal welfare during and between races, euthanasia decisions, poor data tracking, a lack of transparency and problems with rehoming dogs, resulting in New Zealand animal advocacy agencies and the general public questioning the continuation of greyhound racing. The current paper assessed the New Zealand public's awareness and familiarity with commercial greyhound racing, identified current levels of public support or opposition for racing, and provided context in terms of engagement with greyhound racing using a comprehensive survey of a robust sample of New Zealanders. The results confirm that the social license of the greyhound industry is under challenge with most respondents expressing disagreement with or lack of knowledge of current industry practices and indicating they would vote in support of a ban. There is scope for increasing public acceptability by addressing welfare issues, increasing awareness of positive industry practices, and encouraging transparency of the greyhound racing agency. However, as greyhound racing is on the decline worldwide, calls are likely to continue for a phase-out of commercial greyhound racing.

Experiences of intimate partner violence victims: Continued abuses during and after litigation

This quantitative study examined the experiences of intimate partner violence victims during and after separation, with a particular focus on experiences with family court proceedings. Participants were recruited from a family court advocacy agency and self-identified as victims of intimate partner violence. This study explored the following three hypotheses: 1) Participants will report an increase in harassment, stalking, verbal, psychological, and emotional abuse from ex-partners post-separation 2) Participants will report re-traumatization from legal professionals and paraprofessionals in the family law or court system 3) Participants will report that behaviors associated with litigation abuse will go unrecognized by the family court system and legal professionals. Participants reported a post-separation increase in incidents of physical harm toward their children, threats to take their children away, threats to the survivor, their children, family, property, or pets, financial abuse, and insulting or threatening texts or social media messages. Many participants reported re-traumatization in court and reported that legal professionals verbally threatened them, mocked them, did not give them a chance to speak in court, exaggerated the survivor’s faults in court, and provoked them to elicit emotional reactions. Domestic violence survivors indicated a lack of trust in the systems in place to protect them. Systems-level changes to legal proceedings and expanded training for legal professionals is needed.

A Qualitative Study of Risk and Protective Factors for Resilience in Survivors of Sex Trafficking.

This study explored risk and protective factors for resilience in survivors of sex trafficking from the survivors' perspectives. In-depth interviews were conducted with 16 participants recruited from survivor-led advocacy agencies and social service agencies that provide trafficking-specific services. Two overarching themes emerged from data analysis: (a) deep connections to self and others facilitate resilience and (b) detrimental "help" threatens survivors' resilience. Our findings suggest that it may be important for service providers to assist survivors build healthy relationships with themselves and others to promote survivors' resilience. Further, our results highlight the importance of offering more inclusive, survivor-centered, and trauma-informed services.

Victim Service Agency Perspectives on the Impact of the COVID-19 Pandemic

Victim service agencies felt widespread impacts from the COVID-19 pandemic on their staff, organizational practices, and client populations. This study offers a qualitative exploration of the impact of the COVID-19 pandemic across a broad spectrum of victim service settings, including court-based, mental health, medical, child welfare, interpersonal violence, and advocacy agencies. An electronic survey was completed by Ohio agency workers (N = 170) serving child and young adult victims of trauma. Codebook thematic analysis was used to identify agency and staff experiences, client needs, and changes to service delivery during the pandemic. Results revealed victim impacts in six categories: increases in mental/behavioral health needs, challenges resulting from school closures, safety concerns for victims of interpersonal violence, higher levels of crisis needs, isolation/stress, and service access issues. Agency-level impacts focused on the transition to virtual services, challenges with staffing and resources, worker burnout/stress, and resilience and flexibility. Implications are discussed for organizational staffing and trauma-informed training needs, burnout prevention and mitigation, and client service gaps. Future research should continue exploration of system- and organizational-level adaptation in response to the pandemic, as well as the long-term implementation of trauma-informed organizational practices as a strategy to enhance victim service worker satisfaction and retention.

Nexus Among Internal Audit Quality, Corporate Governance and Performance of Selected Banks in Africa

Using a quantitative data set of 213 banks selected from 11 African nations between 2015 and 2020 and ordered probit regression techniques, this study examines the relationship between internal audit quality, corporate governance, and the performance of banks in Africa. The study finds that corporate governance mechanisms (such as board size, board expertise, and corporate governance disclosures), and internal audit quality measures (such as audit experience and internal audit presence) are the critical drivers of bank’s performance in Africa. Findings imply that banks with board members experts in accounting and auditing with the support of experienced professional internal auditors and disclosed corporate governance mechanisms reduce the chances of bankruptcy. The study is one of the few studies that provide insights into internal audit quality and corporate governance mechanisms on the performance of banks in Africa, implying that the findings do not only add to the literature but also to policy and practice. Other implications for theory, regulators, shareholders, policymakers, management, global advocacy agencies, investors and other stakeholders are presented.

‘Land back to the people or not?’ The variable pathways of civic mobilisation against land grabs in rural Sierra Leone

AbstractDrawing on empirical research from Pujehun and Port Loko districts in Sierra Leone, this article explains the variable pathways of civic activism mobilised by environmental advocacy, and legal empowerment organisations, in response to two prominent land grabs. By grounding the analysis within the ontology of place, this study examines the dynamic interplay between national politics, global corporate interests, transnational advocacy, and civic agency in each place. The article finds that although the balance of power between these actors matters, the nature of corporate interests involved can be significant in determining the exact trajectory of civic mobilisation, and ultimately its success.

EKSISTENSI ADVOKAT DALAM MEMBERIKAN BANTUAN HUKUM KEPADA MASYARAKAT TIDAK MAMPU

ABSTRACT
 
 Legal aid is an effort to provide access to people who are financially incapacitated or have limited access to justice and their rights before the law. Provision of legal aid is an important matter in law enforcement for poor people. The state has a role and responsibility in providing legal aid either directly or through designated institutions, such as legal aid or public advocacy agencies. Provision of legal assistance to underprivileged communities is very important to ensure that the rights of underprivileged communities are properly protected before the law. This study aims to determine the mechanism of providing legal aid to the poor and the forms of existence of advocates in providing legal aid. This research is an empirical legal research located at the Legal Aid Post Office of the Indonesian Advocates Association at the Kraksaan District Court. The results of this study indicate that the mechanism for providing legal aid at the IKADIN Legal Aid Post Office at the Kraksaan District Court is very open to the poor. Beginning with submitting a written application containing at least the applicant's identity and a brief description of the subject matter for which Legal Aid is being requested, submitting documents relating to the case and finally attaching a statement of incapacity from the lurah, village head or equivalent official at the place of residence legal aid applicant. If all the requirements have been completed, then the implementation of legal aid for a poor or incapacitated defendant can be held.
 Key Words: Legal Aid, Advocate, Community

장애아동 학대현황, 연구동향 분석 및 제도⋅체계 개선 연구

Objectives The purpose of this study is to identify problems in the institution and support system for children with disabilities, and to look at improvement measures to prevent abuse of children with disabilities by understanding the current status of abuse of children with disabilities (2020), and examining research trends related to abuse of children with disabilities.
 Methods For this purpose, first, this study analyzed the current status by referring to the 2020 Ministry of Health and Welfare s Children s Business Guide and the ‘Survey Results for 2020 Disable of Children Abuse Status analyzed by the Ministry of Health and Welfare and the Central Disability Advocacy Agency. Second, to examine domestic research trends, through the academic research information service published after year 2000 and the National Assembly Electronic Library, this study searched and organized domestic academic journals using academic papers directly related to the abuse of children with disabilities. Third, this study reviewed the system and support system related to the abuse of children with disabilities, and summarized improvement studies.
 Results The research results are first, that in 2020, there were 268 reports of abuse of children with disabilities received from the national advocacy organizations for the rights of people with disabilities, and among them, there were 133 cases of abuse that were adjudicated as abuse, 36 cases of potential risk, 85 cases of non-abuse, and 14 cases under investigation. Abuse cases for children with disabilities accounted for 13.2% of all abuse cases in 2020. Second, studies on children with disabilities who are the victims of abuse are still insufficient. Third, the legal regulation system for children with disabilities should be enacted and strengthened. It is necessary to establish a support system for children with disabilities and systematically implement follow-up measures and interventions for cases of abuse of children with disabilities.
 Conclusions Therefore, this study suggests that it is necessary to seek future directions to prevent abuse of children with disabilities, and to enhance points to improve the current institution and systemic approach.

Access to domestic violence advocacy by race, ethnicity and gender: The impact of a digital warm handoff from the emergency department.

Racial/ethnic minority survivors of domestic violence (DV) referred from emergency departments (EDs) face barriers connecting with advocacy services due to systemic inequities. This study assesses the impact of Domestic Violence Report and Referral (DVRR), a digital mandatory reporting compliance system with integrated direct-to-advocacy referrals sent with patient consent, on survivors' likelihood of receiving advocacy by race/ethnicity and gender. We assessed ED charts between 2014-2018 in an urban, Level 1 trauma center for DV-related positive screening, chief concern, or documentation in medical/social work notes. We matched these visits by name to local DV advocacy agency records. Using logistic regression, we assessed survivor odds of reaching advocacy by DVRR receipt, race/ethnicity and gender. We used predicted probabilities to identify between-group differences in advocacy services received. Of the 1366 visits, 740 received the DVRR intervention; 323 received advocacy services Without DVRR, compared to white, female survivors (n = 87), male survivors (n = 132) had 0.20 (95% CI: 0.07-0.56) times the odds of reaching advocacy compared to female survivors; Latinx survivors (n = 136) had 2.53 (95% CI: 1.58-4.07) times the odds of reaching advocacy compared to white survivors. With DVRR, the odds and predicted probabilities of reaching advocacy increased significantly for all survivors. White, female survivors (n = 74) who received DVRR experienced 2.60 (95% CI: 1.66-4.07) times the odds of connecting with advocacy. Compared to this reference group, Black survivors (n = 480) who received DVRR experienced 4.66 additional times the odds of reaching advocacy services (95% CI: 3.09-7.04) and male survivors (n = 84) experienced 8.96 additional times the odds (95% CI: 2.81-28.56). Overall, we predict 43% (95% CI: 38-53%) of Latinx survivors (n = 177), 36% (95% CI: 31-40%) of Black survivors (n = 480) and 23% (95% CI: 14-32%) of white survivors (n = 83); 37% (95% CI: 33-40%) of women (n = 656) and 29% (95% CI: 18-42%) of men (n = 84) received advocacy services with DVRR. Direct-to-advocacy ED referrals facilitated by eHealth technology improve access to advocacy care for all survivors in this sample; marginalized racial and ethnic groups most often victimized by DV appear to have the highest rates of connection to advocacy.

O papel da avaliação na prática avançada de enfermagem gerontológica baseada em competências

Population aging challenges healthcare systems, requiring gerontological advanced practice nurses (GAPN) to address specific and complex care requirements of older adults. GAPN implement evidence-based practices directed to patients and families, focusing on health promotion and protection, disease prevention, recovery, and rehabilitation. In competence-based gerontological advanced practice, comprehensive geriatric assessment is essential for implementing the care plan. In this theoretical essay we reflect about the role of assessment in competence-based advanced nursing practice directed to the care of older adults. From our perspective, geriatric assessment for a high-quality practice must be comprehensive, multidimensional, interdisciplinary, and planned. GAPN must have solid competencies for clinical skills and caring practices; education for health literacy; collaborative care; system management for continuity of care; ethics, advocacy, and moral agency; and evidenced-based practice inquiry. Gerontological models of care and GAPN competencies serve as frameworks to guide practice while assessment is fundamental for providing age-friendly care to older adults.

A community-targeted implementation of self-management for people with epilepsy and a history of negative health events (SMART): A research and community partnership to reduce epilepsy burden

AimsSelf-management for people with epilepsy and a history of negative health events (SMART) is a behavioral intervention that has been demonstrated to reduce epilepsy-related complications and improve physical and mental health functioning among people with epilepsy (PWE) [1]. The Community-SMART (C-SMART) initiative was a 4-month prospective implementation of feasibility and pre/post outcomes of SMART in a community setting and in collaboration with key epilepsy service stakeholders. MethodsSelf-management for people with epilepsy and a history of negative health events is a group-format, entirely virtual intervention delivered in eight 60–90 sessions over the course of 8–10 weeks. The C-SMART initiative used research staff to guide intervention performance evaluation and staff of a regional epilepsy advocacy agency to assist with community engagement. Process evaluations included outreach and engagement efforts needed to reach PWE, the barriers and facilitators to roll-out, and participant retention and satisfaction. Outcomes included depressive symptoms and epilepsy self-management competency. ResultsThirty individuals were enrolled in 3 “cohorts” of approximately 10 PWE per cohort. Mean age of participants was 48.50 (standard deviation 16.15) years, 60% were female and 53.3% were African-American. Individuals had epilepsy, on average, for over 2 decades, were on approximately 2 prescribed antiepileptic drugs (AEDs) and had an average of just over 6 seizures in the last 30 days. Over 63% had a comorbid mental health condition. There were 23 individuals (76.7%) who were retained at the 4-month follow-up. Baseline to 4-month outcomes for depression and epilepsy self-management were significantly improved. Most (90%) of participants reported high levels of satisfaction with the program. ConclusionsThe SMART epilepsy self-management program can be successfully implemented in partnership with epilepsy-focused community partners, is acceptable to participants and associated with improved outcomes. Future work might consider how to make virtual epilepsy self-management available to the full spectrum of PWE.

The Impact of COVID-19 Restrictions on Victim Advocacy Agency Utilization Across Pennsylvania.

This brief report highlights the impact of the COVID-19 restrictions on the utilization of Victim Advocacy Agencies’ (VAAs’) services across Pennsylvania, using VAA utilization data from 2019–2020. VAA utilization data in this report were collected from 2019–2020 by the Pennsylvania Coalition Against Rape (PCAR). VAA utilization data were anchored to COVID-19 restriction timelines, defined by the Pennsylvania Office of the Governor. For each month, a percent change in VAA utilization (e.g., Jan 2020 utilization compared to Jan 2019 utilization) was calculated. A one-way ANOVA was run to assess whether the association between restriction phase and percent change in overall VAA utilization from 2019 to 2020 was statistically significant. A substantial decrease in VAA utilization was observed once lockdown restrictions were enacted, as well as a sustained decrease in utilization between 2019 and 2020. When restrictions were eased, an increase in service utilization was noted. This pattern of findings held for the three variables assessed: hotline utilization, new client, and medical accompaniments for FREs per month. The one-way ANOVA confirmed a statistically significant decrease in overall VAA utilization when comparing the most severe COVID-19 related restrictions to both pre-COVID and less severe restrictions. A variety of barriers (e.g., financial instability, loss of childcare, technology access, chronic physical proximity to abuser, hospital visitation restrictions, fears of contracting the virus) may result in decreased utilization of VAA services. Future research should investigate the relevance of potential causal mechanisms behind VAA utilization to help inform intervention approaches.

Promoting Cross-Sector Collaborations to Address Intimate Partner Violence in Health Care Delivery Systems Using a Quality Assessment Tool.

Background: As part of a Domestic Violence and Health care Partnership (DVHCP) project in California, 19 leadership teams consisting of representatives from domestic violence agencies and health care delivery systems in California came together to improve care related to intimate partner violence (IPV). We evaluated the impact of a Quality Assessment/Quality Improvement (QA/QI) tool on health care delivery systems' ability to collaborate with victim service agencies to address IPV. Methods: Each leadership team completed the QA/QI tool every 6 months between 2014 and 2017. Fifteen clinics that completed the tool at least twice are included in this analysis. Results: The largest changes noted in the QA/QI tool were having written protocols for assessing for IPV, providers distributing educational safety cards about IPV to patients, scripts for providers on how to assess and support survivors of IPV, trainings led by IPV agency advocates, and support for staff to discuss difficult cases. Conclusions: Implementation of a QA/QI tool can guide health care delivery systems to make changes in provider practices and clinic protocols to improve care and support for survivors of IPV. Such clinic-level changes may support providers to more readily or consistently integrate addressing IPV in clinical encounters while facilitating and promoting cross-sector collaborations with victim service advocacy and related social service agencies.

A Pilot Program’s Healthcare Response to Human Trafficking in Houston, Texas

ABSTRACT Baylor College of Medicine, in collaboration with city of Houston officials and local healthcare and social service agencies, created a hospital-based program to better identify and address the complex and urgent needs of patients with a history of human trafficking exploitation. This article describes the development of the city-wide public health approach to human trafficking, which brings together local hospital systems, nonprofit advocacy agencies, law enforcement, faith-based groups, and legal services to create a medical, legal and social services partnership to address the compex needs of trafficked persons. The Baylor College of Medicine Anti-Human Trafficking Program’s efforts at education, clinical care, advocacy, and research regarding patients with a history of human trafficking are highlighted, and an integrated healthcare framework is provided for other municipalities, health care leaders, and providers to consider in the development of their own anti-human trafficking programs.

Extending hospitality to customers with epilepsy

According to the World Health Organization,1 around 50 million people worldwide live with the invisible disability epilepsy. Research has found that the neurological condition is generally shown to reduce an individual’s quality of life because it impacts on personal sense of control and can limit positive life experiences.2 However, little remains known about how an individual’s experience of hospitality may be affected by the condition. This article reports on the findings of a recent study that aimed to explore the lived experiences of tourism and hospitality for people with epilepsy.3 The phenomenological in-depth study concluded that, for the most part, hospitality customers with epilepsy were unaffected by their condition. Despite this finding, the study revealed important implications for the hospitality industry in terms of the need to provide greater support and accommodation to customers with epilepsy. Although most of the study’s respondents were found to have controlled their seizures through medication, they reported needing to follow an ‘epilepsy plan’ in the event that they have a seizure when out in public based on their known triggers. To further ensure their safety, respondents reported that they only travel if accompanied by a support companion, and/or a service animal. The physical accessibility of hospitality establishments was also claimed to be important, notably in relation to wheelchair access (if required) and physical and private spaces in case of a seizure. However, one of the most significant findings was the individual’s preference for non-disclosure of their condition. As one respondent explained, “If we go into a restaurant for a meal, unless [name] had a seizure right in the middle of the meal, we probably wouldn’t say anything.” Despite regulations that prohibit the discrimination of people with disabilities, the lack of disclosure was attributed to individuals’ fear and perceived stigma in relation to the reactions of other people. Misunderstandings of the condition have been widely noted. cf4 Respondents commented that sometimes hospitality staff have been known to confuse behaviours associated with an epileptic seizure with a mental health or some other stigmatising condition. For example, some people may be quite alert during a seizure but appear ‘odd’ in terms of their behaviour; they may start tapping their feet, or decide they can smell something, or feel disconnected. Some people may appear ‘drunk and disorderly’ in their seizure pattern. As such, there is a need for greater awareness, beyond basic first aid training, of the forty different epileptic seizure types and what they might look like. This may start with gaining information about the common triggers for epileptic seizures, and how to respond, from a tailored session with a local epilepsy advocacy agency, or their online training resources. There is a need for hospitality providers to consider access, support and accommodation for people with epilepsy. The result of lack of awareness is that people with epilepsy remain restricted in their ability to enjoy life and stigmatised by their condition. An epilepsy advisor in the study explained, “It is about giving them the confidence; it is that you will look after them, you will make them secure. It is not about disabling them; it is about enabling them to cope and that’s where you go through in understanding their seizure triggers and their seizures so that they understand how to cope for themselves.” The study respondents’ advice to the hospitality industry was to become aware, informed and ‘just ask’, rather than reacting with fear and ignorance. Hospitality, to them, was related to extending a welcome to people with epilepsy into the café, restaurant, motel or hotel and asking their needs, so that if a seizure happens, hospitality workers know how to help. In the words of one respondent, “You’re made welcome, and whatever happens, you are still welcome.” Corresponding author Alison McIntosh can be contacted at: alison.mcintosh@aut.ac.nz. References (1) World Health Organization (2019, June). Epilepsy. Key Facts. https://www.who.int/news-room/fact-sheets/detail/epilepsy. (2) Bishop, M., Allen, A. The impact of epilepsy on quality of life: A qualitative analysis. Epilepsy & Behavior, 2003, 4, 226–233. https://doi.org/10.1016/j.annals.2019.102856 (3) McIntosh, A. J. (2020). The hidden side of travel: Epilepsy and tourism. Annals of Tourism Research, 2020, 81, 102856. (4) Jacoby, A. Stigma, epilepsy and quality of life. Epilepsy & Behavior, 2002, 3(Suppl.), S10–S20. https://doi.org/10.1016/s1525-5050(02)00545-0.