Perspective Of Family Members Research Articles

CAREGIVING FOR OLDER ADULTS: EXPLORING THE IMPLICATIONS FOR FAMILIAL RELATIONS, DYNAMICS, AND FRIENDSHIP

Abstract In this symposium, we discuss about various aspects of caregiving for older adults who require care because of chronic illness, frailty, and/or long-term disability. Their needs take many forms and so do the demands and concerns of their caregivers, comprising family members and close friends. Under these trying circumstances, relationships are put to the test; shared sensibilities and understandings built over decades of marital and family life begin to unravel, and friendships fray. Thus, caregiving has profound implications for the family as well as non-family members who provide care. Caregiving itself is marked by varying intensities expressed in anguished voices of loss, frustration, and anger but they also convey a deep sense of responsibility, gratitude, and love. There is much that caregiving could offer in terms of the potential for deeper meaning, connection, satisfaction, and goodness. Hence, the papers in this symposium will examine how caregiving responsibilities are distributed among family and non-family members; analyze the implications of caregiving on the notion of home/homeliness for caregivers; account for the meaning of caregiving for a parent or older family member as diverse expressions of filial piety; and explore the issues and challenges around caregiving for older adults with cognitive impairment including dementia from the perspectives of family and non-family members who are caregivers. Collectively, the papers highlight the relational and reciprocal nature of caregiving, and in which intimate relational and cultural processes shape not only the quality and experiences of caregiving but also foundations of the family and notions of home.

"Take Us Into Account": Perspectives of Family Members of People With Parkinson's Disease Regarding Speech-Language Pathology Intervention.

While communication changes associated with Parkinson's disease (PD) have been documented, research on the impact of these changes on family members is just beginning to emerge. With this new focus on family, questions arise as to how well speech-language pathology services address their needs communicating with their loved one with PD. The purpose of this study was to explore the experiences of family members of people with PD (PwPD) and their recommendations for speech-language pathology services that incorporated their needs. Seventeen spouses/partners of PwPD participated in focus groups that were recorded, transcribed, and analyzed using thematic analyses. Three themes emerged, all focusing around the central tenet that the experiences of family members, and hence their need for speech-language pathology support, transitioned through the stages of PD progression. Theme 1 summarized increasing burdens on family to manage communication as PD progressed beyond a brief period of independent strategy use by PwPD. Theme 2 highlighted multifactorial contributors to communication burdens on families, with cognitive impairments being the most underrecognized. Theme 3 illustrated how families wanted more intervention options from speech-language pathologists (SLPs) that included them, but with a tailored approach for PD stages and personal preferences. When SLPs provide families with either generic communication strategies or strategies that do not fit the individualized needs of PwPD and their families, we may inadvertently be increasing the burden on families. There is a need for systematic, evidence-based, family-centered interventions that include, but go beyond, current speech-focused interventions to meet the shared communication needs of PwPD and their families.

Identity Disclosure Between Donor Family Members and Organ Transplant Recipients: A Description and Synthesis of Australian Laws and Guidelines.

The disclosure of information that identifies deceased organ donors and/or organ transplant recipients by organ donation agencies and transplant centres is regulated in Australia by state and territory legislation, yet a significant number of donor family members and transplant recipients independently establish contact with each other. To describe and synthesize Australian laws and guidelines on the disclosure of identifying information. Legislation and guidelines relevant to organ donation and transplantation were obtained following a search of government and DonateLife network websites. Information about the regulation of identity disclosure was extracted and synthesised using a process guided by Walt and Gilson's (1994) policy analysis framework. Nineteen documents were examined. Six guidelines refer to and were consistent with current legislation. Four documents did not address identity disclosure. All jurisdictions prohibit healthcare professionals from disclosing identifying information. In three states, the prohibition extends to all members of the public including donor family members and transplant recipients. Restrictions on identity disclosure have implications for public promotion of donation and transplantation where sharing of stories and images of organ donors and transplant recipients is common. Further research is required to understand the perspective of donor family members, transplant recipients, and healthcare professionals impacted by the current laws.

Factors influencing early mobilisation for patients undergoing pancreatic surgery from multiple perspectives: a qualitative descriptive study

ObjectivesDespite early mobilisation as a key component of enhanced recovery after surgery pathways for pancreatic surgery, the implementation of early mobilisation remains unsatisfactory. What factors influence the implementation of early...

Conquistando um novo equilíbrio: Um estudo qualitativo de como a vida familiar foi afetada pela COVID-19

Objective: to examine the repercussions of the pandemic on the family system by focusing on the perspective of family members who contracted and experienced COVID-19. Method: an exploratory study with a qualitative approach conducted with 27 individuals who had COVID-19. Data collection took place through telephone interviews that were audio-recorded and guided by a semi-structured instrument. Data analysis was based on an inductive process supported by Reflexive Thematic Analysis. Results: the pandemic and illness of a family member acted as driving forces generating new and intense movements in the family system. Initially, they noticed negative repercussions such as concerns, fear, anguish, stress, distancing and social isolation. As time progressed and by using technologies to ease communication, they began to perceive positive repercussions such as increased proximity, strengthening of ties, development of new roles and care. The families also identified recovery of a balanced position, with return of certain readjustment in family dynamics and functioning. Conclusion: health professionals need to recognize that the COVID-19 disease has imposed repercussions on family systems, proposing interventions that help families face this moment and more easily recover a balanced position for their functioning.

OP07 Eleven Years Of Conitec: Advances And Challenges Of Patient And Public Involvement In The Brazilian Health Technology Assessment Process

IntroductionPatient and public involvement (PPI) is a core element of the health technology assessment (HTA) process. Since its creation in 2011, the National Committee for Health Technology Incorporation (Conitec) has promoted initiatives to include stakeholders in HTA for the Brazilian Public Health System (SUS). This work aimed to present a report on the advances and challenges related to PPI in 11 years of Conitec.MethodsA retrospective analysis of PPI actions carried out at Conitec was conducted, based on an analysis of minutes and records of meetings and discussions held internally and documents published on Conitec´s website.ResultsEvents and meetings were held over the years with different actors interested in the HTA process. Since 2015, a plain-language version of the technical report has been made available to the public during public consultations for each HTA topic. Recently, a register of patients, specialists, and SUS managers was created to form a database and establish a network with the stakeholders. Since 2020, SUS users have been allocated time to speak at Conitec´s meetings. Qualitative analysis of public consultation documents started in 2021 and a pilot qualitative evidence synthesis was carried out in 2022. These initiatives, although not directly focused on PPI, increase the consideration of the perspectives of patients, family members, and caregivers in the HTA process.ConclusionsPPI actions implemented at Conitec have significantly promoted inclusiveness and exchanges among stakeholders, contributing to a greater transparency regarding Conitec’s actions. Nonetheless, we have important challenges on our horizon, such as strengthening connections with primary healthcare managers and professionals and social movements. It is also strategic to expand the technical and scientific discussion on PPI and qualitative approaches with HTA researchers and the voting members of Conitec. Finally, another aim is to improve knowledge of HTA and public health policy among law professionals and the pharmaceutical industry in Brazil.

Family experiences of the management of challenging behaviours after traumatic brain injury in the acute hospital setting

Purpose This study explored experiences of the management of challenging behaviours after traumatic brain injury (TBI) in the acute hospital setting from the perspectives of family members. Materials and Methods A qualitative, interpretive phenomenological approach was adopted involving semi-structured interviews with 10 family members. Interviews were transcribed and analysed using thematic analysis, with Ecological Systems Theory applied as a guiding framework to discuss findings and implications for practice. Results Four primary themes were identified: 1) The hospital environment; 2) Hospital staffing; 3) Identifying and preventing triggers, and 4) Family support and information. Conclusions This qualitative study highlights the need for further information, education, and support to families of patients with TBI in the acute setting. Further research investigating the implementation of best practice approaches for managing challenging behaviours practice in acute settings is needed to overcome the barriers of the hospital environment, inexperienced and inconsistent staffing, and difficulties identifying triggers within the acute hospital setting, experienced by families. Approaches for family involvement in behaviour management strategies, and facilitation of communication for people with TBI in the acute setting requires exploration.

Perceptions of family members on family collaboration during pregnancy

Background: Family collaboration is the interactive coordination between family members aimed towards achieving a common goal and putting individual differences aside. The collaboration received from the family makes the pregnant woman feel valued. However, family members have been identified as not collaborating in meeting basic needs of the pregnant woman. They have been found to maltreat pregnant women, by giving them chronic house-hold chores, depriving them of food and blocking access to health care. The study creates awareness on involvement of family in caring for the pregnant woman. The educational pamphlet developed, serves as educational resource on usefulness of family collaboration during pregnancy. Objectives: To explore family collaboration during pregnancy from the perspectives of family members of pregnant women, as well as also to develop an educational pamphlet from the findings to enhance family collaboration. Method: Qualitative research, using open-ended questionnaire. Fourteen family members participated, until data became saturated. Content analysis method by Erlingsson and Brysiewicz, was used in analyzing data, as this is well suited for qualitative analysis. Questionnaires were read thoroughly, and texts were formed into meaning units, these were concisely condensed while retaining the core meaning, the units were labeled by formulating codes. Codes related were formulated into Categories. The categories formed the themes of the pamphlet. Result: The findings are presented in form of a pamphlet that has been attached as a download to this article (refer to Download pamphlet). Conclusion: The study described perceptions of family members on family collaboration, through the categories that emerged from the findings and the pamphlet highlight ways that family can support a pregnant member during pregnancy.

Experiences of transition from hospital to community living via the Pathways to Community Living Initiative: A qualitative evaluation study of service users and family members.

People with severe and persistent mental illness (SPMI) may be excluded from community-based care if their complex support needs cannot be met and are at risk of institutionalisation. The Pathways to Community Living Initiative (PCLI) aims to address barriers to community living. This study evaluated the PCLI from the perspective of service users and family members. Evaluation questions were explored in semi-structured interviews. Transcripts were coded inductively and deductively. This article adheres to relevant EQUATOR standards for qualitative research and reporting. There were 37 interviews with 27 service users and 12 family members. Factors associated with positive experiences of transition from hospital included detailed planning, personalised care, and staged transitions which alleviated concerns around safety, support, and coping. Community living provided opportunities to exercise greater choice and control in everyday life and, for some, to reconnect with family. Poor physical health and social isolation were noted as potential risks. Participants regarded community living as preferable to hospital settings, and highly valued their freedom. They reported that clinical, aged care and disability supports helped them. Additional support may be required to improve physical health and social connectedness, and families appear to have unmet needs for psychosocial support.

The Role of Family in Diabetes Management for Mexican American Adults.

Introduction: The purpose of this study was to characterize how family influences diabetes self-management in Mexican American adults. Methods: Data were analyzed from previously collected data that included 34 semi-structured interviews with Hispanic adults with diabetes and six focus groups with 37 adults with diabetes and family members. Themes related to family and diabetes management were identified and analyzed using a modified template approach. Results: Family-related facilitators to T2DM self-management were (1) provides support, (2) provides motivation, and (3) desire to protect family from diabetes. Family-related challenges were (1) lack of support, (2) family responsibilities, and (3) stress related to family. Diabetes education was shared with family members. Family member perspectives on T2DM included (1) not knowing how to help, (2) effect on emotional wellbeing, (3) diabetes affects the whole family, and (4) family provides support. Conclusion: Most participants with T2DM felt supported by family, but many desired more social support and support surrounding dietary changes from family. Many felt family did not understand what living with diabetes meant for them. Most family members wished to learn more about how to help. Future interventions should include family members and teach them supportive strategies to support beneficial diabetes self-management behaviors.

Reasons for the non-use of hearing aids: perspectives of non-users, past users, and family members

Objective Hearing loss in the older adult population is a significant global health issue. Hearing aids can provide an effective means to address hearing loss and improve quality of life. Despite this, the uptake and continued use of hearing aids is low, with non-use of hearing aids representing a significant problem for effective audiological rehabilitation. The aim of this study was to investigate the reasons for the non-use of hearing aids. Design and study sample A cross-sectional survey was used to investigate the reasons given for the non-use of hearing aids by people with hearing loss (n = 332) and family members (n = 313) of people with hearing loss in Australia, the UK, and USA. Results Survey results showed that hearing aid non-users generally cited external factors as reasons for non-use, whereas family members reported non-use due to attitudinal barriers. Past users of hearing aids and family members of past users both identified devices factors as barriers to use. Conclusions Differences in reasons for non-use may provide further insight for researchers and clinicians and help inform future clinical practice in addressing the low uptake and use of hearing aids by people with hearing loss and the role of family members in audiological rehabilitation.

Appraising Unmet Needs and Misinformation Spread About Polycystic Ovary Syndrome in 85,872 YouTube Comments Over 12 Years: Big Data Infodemiology Study.

Polycystic ovary syndrome (PCOS) is the most common endocrinopathy in women, resulting in substantial burden related to metabolic, reproductive, and psychological complications. While attempts have been made to understand the themes and sentiments of the public regarding PCOS at the local and regional levels, no study has explored worldwide views, mainly due to financial and logistical limitations. YouTube is one of the largest sources of health-related information, where many visitors share their views as questions or comments. These can be used as a surrogate to understand the public's perceptions. We analyzed the comments of all videos related to PCOS published on YouTube from May 2011 to April 2023 and identified trends over time in the comments, their context, associated themes, gender-based differences, and underlying sentiments. After extracting all the comments using the YouTube application programming interface, we contextually studied the keywords and analyzed gender differences using the Benjamini-Hochberg procedure. We applied a multidimensional approach to analyzing the content via association mining using Mozdeh. We performed network analysis to study associated themes using the Fruchterman-Reingold algorithm and then manually screened the comments for content analysis. The sentiments associated with YouTube comments were analyzed using SentiStrength. A total of 85,872 comments from 940 PCOS videos on YouTube were extracted. We identified a specific gender for 13,106 comments. Of these, 1506 were matched to male users (11.5%), and 11,601 comments to female users (88.5%). Keywords including diagnosing PCOS, symptoms of PCOS, pills for PCOS (medication), and pregnancy were significantly associated with female users. Keywords such as herbal treatment, natural treatment, curing PCOS, and online searches were significantly associated with male users. The key themes associated with female users were symptoms of PCOS, positive personal experiences (themes such as helpful and love), negative personal experiences (fatigue and pain), motherhood (infertility and trying to conceive), self-diagnosis, and use of professional terminology detailing their journey. The key themes associated with male users were misinformation regarding the "cure" for PCOS, using natural and herbal remedies to cure PCOS, fake testimonies from spammers selling their courses and consultations, finding treatment for PCOS, and sharing perspectives of female family members. The overall average positive sentiment was 1.6651 (95% CI 1.6593-1.6709), and the average negative sentiment was 1.4742 (95% CI 1.4683-1.4802) with a net positive difference of 0.1909. There may be a disparity in views on PCOS between women and men, with the latter associated with non-evidence-based approaches and misinformation. The improving sentiment noticed with YouTube comments may reflect better health care services. Prioritizing and promoting evidence-based care and disseminating pragmatic online coverage is warranted to improve public sentiment and limit misinformation spread.

Participation in inpatient care from the perspective of family members of palliative care patients.

The participation of family members in inpatient palliative care has been shown to be meaningful; it contributes to the wellbeing of the patient. Even so, little is known about the perspectives of family members regarding their participation in this type of care. The aim of this study was to describe participation in inpatient care from the perspective of family members of palliative care patients. This study involved semi-structured individual interviews with family members (n=19) of patients receiving inpatient palliative care, as well as inductive thematic analysis. Four main themes describing the family members' perspectives of their participation in inpatient palliative care were identified: family members attending to everyday activities, importance of participation to family members, family members providing emotional support to patients and the role of family members in discussions and decision-making processes concerning patient care. Family members participate in inpatient palliative care in different ways. Participation was experienced as important to patients and family members, and some family members felt that participation may have supported their coping process.

Globalization, Technological Advancement and the Elderly People: A Systematic Review of Literature

Old age comes with lots of challenges which become a burden to the able-bodied members of society and may cause physical and economic stress over the short and long term. Technology has catalysed development processes the world over for many decades now. It has affected the senior members of society in their everyday lives either negatively or positively. Existing research focused much on the impact of technology on old people from the perspective of caregivers and family members. This paper examines the impact of technology on old people using the available literature from the old people's perspective. International Bibliography of the Social Sciences (IBSS) and sociological abstracts (SOCAB) databases were used, and a total of 6 articles from a pool of articles generated were analysed. The study found that there are several assistive devices available to the ageing members which to a great extent gives them a sense of belonging to society in that it helps them keep their identity by being independent. It has also been found that old people are still sceptical about some of the devices as they are perceived to be invading their privacy. Furthermore, the paper proposes a future study on how social interaction can lead to successful ageing.

Impact of a Father–Child, Community-Based Healthy Lifestyle Program: Qualitative Perspectives from the Family Unit

The Healthy Dads, Healthy Kids (HDHK) program was designed to help fathers with BMI ≥ 25 kg/m2 to lose weight and positively influence physical activity and dietary behaviors of their children. There is a need to better understand the broader impact of father-focused, healthy lifestyle programs from the perspectives of other family members. This qualitative study explored the impact of a HDHK by gathering insights from the family unit (fathers, mothers/partners and children). Fathers and children who participated in the HDHK dissemination trial from the Maitland local government area (New South Wales, Australia) (n = 33) and all mothers/partners of participating HDHK were invited to take part in this qualitative study. Eleven focus groups were undertaken with 25 fathers (41.9 ± 6.3 years, 32.4 ± 5.1 kg/m2), 15 mothers/partners’ (38.1 ± 6.6 years), and 41 children (51% male, 8.2 ± 2.1 years). Audio recordings were transcribed and analyzed by an independent researcher using a standard general inductive approach to qualitative analysis with thematic analysis applied. Three key themes emerged, demonstrating several personal and family program impacts. These included a positive impact on: (i) the father-child relationship, (ii) new family habits (e.g., lifestyle changes within the family unit) and (iii) fathers’ involvement and parenting practices (e.g., increase in fathers’ household responsibilities). Improving the knowledge and skills of fathers and children through evidence-based strategies may be a useful approach to strengthen their relationship, enhance parenting strategies, and optimize health behaviors. Notably, findings showed the changes made by the fathers and children positively impacted the wider family unit.

“I’ll live better, stay away from crime”: exploring the reintegration of former prisoners into the community through a music programme

PurposeThere is evidence that music programmes can have a positive impact on people in contact with the criminal justice system. However, little attention has been paid to the potential role of music programmes as people leave prison and re-enter the community. Providing support for former prisoners “through-the-gate” is important to aid resettlement and reduce the risk of reoffending. This paper aims to present research on a programme called Sounding Out: a two-year, London-based programme providing ex-prisoners with longer-term rehabilitative opportunities upon their release to bridge the gap between life inside and outside of prison.Design/methodology/approachThe study aimed to understand the impact of the Sounding Out programme on ex-prisoners from the perspective of participants, staff and family members. Semi-structured interviews took place with 17 people: ten participants across two Sounding Out projects; six members of staff – three from the Irene Taylor Trust, two musicians and one former prison worker; and one family member of a participant.FindingsThe research provides an understanding of the impact of involvement in a carefully designed programme of music creation, skills development and work placements. Thematic analysis of the data resulted in three key themes: personal impact, focus and direction and interpersonal relationships. The findings are consistent with the body of research that demonstrates the impact of music programmes on prisoners.Originality/valueThe current study adds to the relatively limited body of evidence on the role of music programmes in the reintegration of former prisoners into the community.

Patient, family member, and health care provider perspective on barriers and facilitators to diabetic retinopathy screening in Thailand: A qualitative study.

Diabetic retinopathy (DR) can cause significant visual impairment which can be largely avoided by early detection through proper screening and treatment. People with DR face a number of challenges from early detection to treatment. The aim of this study was to investigate factors that influence DR screening in Thailand and to identify barriers to follow-up compliance from patient, family member, and health care provider (HCP) perspectives. A total of 15 focus group discussions (FGDs) were held, each with five to twelve participants. There were three distinct stakeholders: diabetic patients (n = 47) presenting to a diabetic retinopathy clinic in Thailand, their family members (n = 41), and health care providers (n = 34). All focus group conversations were transcribed verbatim. Thematic analysis was used to examine textual material. Different themes emerged from the FGD on knowledge about diabetes, self-care behaviors of diabetes mellitus (DM), awareness about DR, barriers to DR screening, and the suggested solutions to address those barriers. Data showed lower knowledge and awareness about diabetes and DR in both patients and family members. Long waiting times, financial issues, and lack of a person to accompany appointments were identified as the major deterrents for attending DR screening. Family support for patients was found to vary widely, with some patients reporting to have received adequate support while others reported having received minimal support. Even though insurance covered the cost of attending diabetes/DR screening program, some patients did not show up for their appointments. Patients need to be well-informed about the asymptomatic nature of diabetes and DR. Communication at the patient level and shared decision-making with HCPs are essential. Family members and non-physician clinicians (such as diabetes nurses, diabetes educators, physician assistants) who work in the field of diabetes play a vital role in encouraging patients to attend diabetes and DR follow-ups visits regularly.

Perspectives of Intensive Care patients and family members on competencies for Advanced Intensive Care nurses in Europe

Background
 One output from the International Nursing Advanced Competency-based Training for Intensive Care (INACTIC) collaboration is a set of core competencies for advanced practice Intensive Care Unit (ICU) nurses across Europe. Some European countries, such as the UK, have identified such competencies, however, these advanced practice roles are rarely practiced across the rest of Europe. The INACTIC competencies were developed with an expert panel of 184 ICU nurses from 20 countries. It is also important to examine what patients and relatives with experience of intensive care felt about these competencies. 
 Aim
 To examine the views of recovered ICU patients and relatives regarding the INACTIC competencies.
 Methods
 Three patient and relative focus groups were conducted in England (n=5), Scotland (n=4) and Greece (n=4) to discuss a lay version of the INACTIC competencies. Discussions were open ended, followed a topic guide, recorded and transcribed verbatim. Analysis followed a conventional thematic approach, with the findings discussed iteratively among the authors.
 Results
 The feedback from across the focus groups resulted in three themes: 1) the importance of nurses being empowered to advocate for the patient; 2) the centrality of communication; and, 3) the impact of variability in ICU practices. There was a notable difference with the Greek focus group; because of restricted family visiting policies, relatives did not feel encouraged to participate in patient care.
 Conclusions
 The perspectives of patients and relatives largely aligned with the consensus of the INACTIC expert panel. Local differences in ICU experience highlight the changes that some ICUs would need to make for the INACTIC competencies to be embedded.

Exploring the importance of predisposing, enabling, and need factors for promoting Veteran engagement in mental health therapy for post-traumatic stress: a multiple methods study

PurposeThis study explored Veteran and family member perspectives on factors that drive post-traumatic stress disorder (PTSD) therapy engagement within constructs of the Andersen model of behavioral health service utilization. Despite efforts by the Department of Veterans Affairs (VA) to increase mental health care access, the proportion of Veterans with PTSD who engage in PTSD therapy remains low. Support for therapy from family members and friends could improve Veteran therapy use.MethodsWe applied a multiple methods approach using data from VA administrative data and semi-structured individual interviews with Veterans and their support partners who applied to the VA Caregiver Support Program. We integrated findings from a machine learning analysis of quantitative data with findings from a qualitative analysis of the semi-structured interviews.ResultsIn quantitative models, Veteran medical need for health care use most influenced treatment initiation and retention. However, qualitative data suggested mental health symptoms combined with positive Veteran and support partner treatment attitudes motivated treatment engagement. Veterans indicated their motivation to seek treatment increased when family members perceived treatment to be of high value. Veterans who experienced poor continuity of VA care, group, and virtual treatment modalities expressed less care satisfaction. Prior marital therapy use emerged as a potentially new facilitator of PTSD treatment engagement that warrants more exploration.ConclusionsOur multiple methods findings represent Veteran and support partner perspectives and show that amid Veteran and organizational barriers to care, attitudes and support of family members and friends still matter. Family-oriented services and intervention could be a gateway to increase Veteran PTSD therapy engagement.

Adults with intellectual disabilities as users of social media: A scoping review

AbstractBackgroundSocial media use continues to grow, and it offers an important way for adults with intellectual disabilities to feel socially included and to communicate with others.AimThis study aimed to establish the state of knowledge about social media use among adults with intellectual disabilities, their experiences and its impact.MethodA scoping review was conducted of peer‐reviewed literature published between 2000 and 2021 that reported empirical research on social media use, experiences, training and outcomes for adults with intellectual disabilities.FindingsAdults with intellectual disabilities use social media platforms and experience a range of positive outcomes including feeling more included and valued. Some of the negative impacts included bullying and exploitation. The high cost of technology and some elements of design sometimes make social media inaccessible.ConclusionsThe studies included provided evidence about the experience of using social media from adults with intellectual disabilities and some perspectives of family members and paid supporters. Future research is needed to examine effective approaches to overcoming barriers to access and ways to manage some of the negative impacts of engagement in order to inform policy and practice.