Trans and Gender-Diverse peoples’ experiences of crisis helpline services

Crisis helplines are typically easily accessible and deliver interventions in a timely manner, regardless of geographical location. The efficacy and user experiences of these services are the subject of considerable interest within the field, but the experiences of trans and gender-diverse individuals remain unexplored despite high rates of mental ill health being documented in this population. A total of 134 trans and gender-diverse Australians were surveyed about their experiences of personal crises and of utilising crisis helplines. Within our sample, 84.2% (n = 113) of participants recognised at least one service – however, only 32.8% (n = 44) utilised a service to cope with a personal crisis. Participants cited poor recognition and understanding of the challenges specific to trans and gender-diverse individuals among helpline workers as a primary reason for avoiding these services, and articulated needs which were a poor fit for the one-off intervention model commonly employed by helpline services. In order for helpline services to be viable avenues of support for trans and gender-diverse individuals during a personal crisis, helpline workers must be sufficiently equipped to work with trans and gender-diverse callers and to facilitate their enrolment in ‘traditional’ mental health services.     

Health and social care practitioners' understanding of the problems of people with dementia‐related visual processing impairment

It has been highlighted that health and social care staff need a greater awareness of the needs and problems of those people with young onset dementia in the UK. Symptoms of Alzheimer's disease are relatively well known (memory loss, disorientation, language difficulties and behavioural problems). However, there is less awareness of dementia‐related visual processing impairments in Alzheimer's disease, Dementia with Lewy Bodies or rarer dementia syndromes such as posterior cortical atrophy (PCA), leading to delayed assessment, diagnosis and management. This qualitative study explored health and social care practitioners’ opinions of the needs of people with dementia‐related visual processing impairment (such as individuals with PCA) and identify any training that these practitioners might need. Social workers, occupational therapists, care home staff, rehabilitation workers (visual impairment), optometrists and admiral nurses participated in focus groups or one‐to‐one semi‐structured interviews. All participants were shown video clips of people with dementia‐related visual impairment to facilitate discussion. Sixty‐one participants took part in focus groups or interviews between November 2014 and December 2015. Participants’ experiences and understanding of dementia were explored and thematic analysis of the data identified two major themes. Theme 1 explores participants’ understanding of dementia‐related visual impairments. Theme 2 recounts how participants address and support people with dementia‐related visual impairment and their families. Participants discussed, reflected and critically analysed the video clips during data collection. Most considered new perspectives of their own clients’ difficulties and those participants working with people with rarer dementias consolidated their experiences. However, some participants seemed hesitant to accept the existence of visual processing impairment arising due to dementia, rationalising novel information to existing understanding of memory loss or behavioural problems. This study highlights that health and social care practitioners want more training and better understanding of less well‐recognised symptoms of dementia and rarer syndromes (including PCA) to ensure appropriate, evidence‐based assessment and intervention.     

The contribution of self‐help/mutual aid groups to mental well‐being

This article explores the contribution of self‐help/mutual aid groups to mental well‐being. Self‐help/mutual aid groups are self‐organising groups where people come together to address a shared a health or social issue through mutual support. They are associated with a range of health and social benefits, but remain poorly understood. This article draws on data from stage one of ESTEEM, a project which runs from 2010 to 2013. Stage one ran from 2010 to 2011 and involved participatory, qualitative research carried out in two UK sites. Twenty‐one groups were purposively selected to include a range of focal issues, longevity, structures and ethnic backgrounds. Researchers carried out 21 interviews with group coordinators and twenty group discussions with members to explore the groups' purpose, nature and development. Preliminary analysis of the data suggested that mental well‐being was a common theme across the groups. Subsequently the data were re‐analysed to explore the groups' contribution to mental well‐being using a checklist of protective factors for mental well‐being as a coding framework. The findings showed that groups made a strong contribution to members' mental well‐being by enhancing a sense of control, increasing resilience and facilitating participation. Group members were uplifted by exchanging emotional and practical support; they gained self‐esteem, knowledge and confidence, thereby increasing their control over their situation. For some groups, socio‐economic factors limited their scope and threatened their future. The article provides an evidence‐base which illustrates how self‐help/mutual aid groups can enhance mental well‐being. If supported within a strategy for social justice, these groups enable people with varied concerns to develop a tailored response to their specific needs. The authors suggest that policy‐makers engage with local people, investing in support proportionate to the needs of different populations, enabling them to develop their own self‐help/mutual aid groups to enhance their sense of mental well‐being.     

Fostering mental health and well‐being among workers who support refugees and asylum seekers in the Australian context

Therapists and counsellors who provide trauma‐focussed therapy and support to refugees and asylum seekers are often exposed to distressing and confronting stories of war, violence, torture, loss and grief, and other atrocities. In addition to this, working within an immigration and detention context has been reported to further contribute to experiences of burnout, vicarious trauma, and other adverse consequences of working with traumatised populations. There is a scarcity of research seeking to understand how therapists address these difficulties and maintain well‐being to help them continue in this field of work. This mixed‐methods research aimed to identify and explore factors associated with mental health and well‐being among workers, with a particular focus on the role of clinical supervision. Participants were staff (n = 50) who identified as providing therapeutic support to refugees and asylum seekers either in Australia or in Australian‐run detention facilities. Participants took part in an anonymous online survey which focussed on the psychological impact of their work, professional quality of life, and clinical supervision and incorporated free‐text items. Thematic analysis of free‐text data revealed four themes related to maintaining well‐being at work including relationships and support seeking; physical and contemplative practices; professional growth; and balance and boundaries. Results from the quantitative analyses revealed several variables related to supervision that were important for well‐being. In particular, the findings suggest that rapport and overall alliance with one's clinical supervisor are protective of secondary traumatic stress and depression, respectively. Important aspects of supervision were also explored in greater depth through qualitative and quantitative inquiry, increasing our understanding of the mechanisms underlying the relationship between clinical supervision and mental health and well‐being for this group.     

‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well‐being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community‐based care for people with dementia can be challenging. Workers often lack training in dementia‐specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person‐centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in‐depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers’ understanding of dementia, person‐centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers’ lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.     

Experiences from the frontline: An exploration of personal advisers’ practice with claimants who have health‐related needs within UK welfare‐to‐work provision

Recent UK welfare reforms have been less successful than expected by the Government in supporting unemployed people with long‐term illness into work. Frontline workers remain a core element of the new welfare‐to‐work machinery, but operate within a changed organisational and policy landscape. These changes raise important questions regarding whether and how claimants’ health‐related barriers to work are considered. This paper examines the UK welfare‐to‐work frontline worker's role with claimants who have long‐term illness. Fieldwork observations in three not‐for‐profit employment support services and semi‐structured interviews with 29 participants (claimants, frontline workers, healthcare professionals and managers) were conducted between 2011 and 2012. Participant observation of the wider welfare‐to‐work arena was initiated in 2009 and continued until 2013. A qualitative methodology drawing on ethnographic principles was adopted. Thematic analysis of the data was carried out. The findings show that the frontline worker plays a key role in assessing and addressing claimants’ health‐related barriers to work. Two important health‐related role dimensions were identified: a health promoter role which involved giving health promotional advice to claimants about their general health; and a health monitor role which involved observing and questioning claimants about their general health. Frontline workers’ practice approaches were shaped by organisational and individual factors. Integration between the National Health Service and employment support services was limited, and the findings suggested improvements were required to ensure an adequate response to claimants’ health‐related needs to support their journey into work.     

Mental health carers’ experiences of an Australian Carer Peer Support program: Tailoring supports to carers’ needs

Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers’ experiences within a community‐based CPSW pilot program in an Australian mental health service. Semi‐structured phone interviews were conducted with 20 carer participants in 2015, 5–10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the “ripple effect” the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.     

Reducing symbolic‐violence in the research encounter: collaborating with a survivor of domestic abuse in a qualitative study in UK primary care

This paper explores ideas of symbolic violence inherent in the research encounter (Bourdieu 1999). After defining symbolic violence and how the concept enters into domestic violence and abuse (DVA) research, we discuss the challenges arising from a (DVA) survivor taking on the role of interviewer in a qualitative study nested within a UK primary care based trial: IRIS (Identification and Referral to Improve Safety). KS, a survivor of DVA, conducted interviews with 12 women who had been referred to a domestic violence agency by primary care clinicians taking part in the IRIS trial in two UK cities (Bristol and east London) during 2009. Field notes were kept during all of the research meetings with KS and these were included in analysis. Our analysis maps the research pathway of ‘non‐violent communication’ and discusses the role of social symmetry and proximity in the research encounter. We conclude that while a welcoming disposition, empathy and active listening are all generic skills to qualitative research; if a researcher can enter fieldwork with a claim of social proximity and symmetry, their use of these generic skills is enhanced through a process of shared objectification and empowerment talk. We explore the limitations of social proximity, its relationship to feminist and anthropological theories of ‘insider’ research and its relevance to primary care research.     

‘If I die,I die,I don’t care about my health’: Perspectives on self‐care of people experiencing homelessness

Self‐care, which refers to what people do to prevent disease and maintain good health, can alleviate negative health consequences of people experiencing homelessness. The aim of the study was to apply a theoretically informed approach in exploring engagement of people experiencing homelessness in self‐care and to identify factors that can be targeted in future health and social care interventions. Qualitative semi‐structured interviews were conducted with 28 participants opportunistically recruited from a specialist homelessness healthcare centre of North East Scotland, the United Kingdom (UK). An interview schedule was developed based on the theoretical domains framework (TDF). Interviews were audio‐recorded and transcribed verbatim. Six aspects of self‐care were explored, including (a) self‐awareness of physical and mental health, (b) health literacy, including health seeking behaviour, (c) healthy eating, (d) risk avoidance or mitigation, (v) physical activity and sleep and (e) maintaining personal hygiene. Thematic analysis was conducted by two independent researchers following the Framework Approach. Participants described low engagement in self‐care. Most of the barriers to engagement in self‐care by participants were related to 'environmental context and resources' domain of TDF. Participants often resorted to stealing or begging for food. Many perceived having low health literacy to interpret health‐related information. Visits to churches and charities to get a shower or to obtain free meals were commonplace. Participants expressed pessimism that there was ‘nothing’ they could do to improve their health and described perceived barriers often too big for them to overcome. Alienation, lack of social support and the perception that they had done irreversible damage to their health prevented their involvement in self‐care. The theme of ‘social circle’ held examples of both enabler and barriers in participants’ uptake of risky behaviours. Health and social services should work with persons experiencing homelessness in designing and delivering targeted interventions that address contextual barriers, multi‐morbidity, health literacy and self‐efficacy.     

Consequences,control and appraisal: cues and barriers to engaging in self‐management among people affected by colorectal cancer – a secondary analysis of qualitative data

Background Little is known about peoples’ self‐management experiences and their desires or expectations to engage in self‐management. As such, there is little understanding about individuals’ perceived cues and barriers to engagement in self‐management, particularly in people affected by cancer. Objective To understand cues and barriers to people’s engagement in self‐management during chemotherapy treatment for colorectal cancer. Design Secondary analysis of qualitative data from mixed methods, longitudinal study. Setting and participants Eleven participants undergoing treatment for colorectal cancer. Semi‐structured interviews were conducted twice with each participant, at the start and end of a 6‐month course of chemotherapy treatment in a Scottish cancer centre. Results Cues and barriers to engagement in self‐management appeared to stem from perceptions of the impact and associated severity of side effects experiences as well as the perceptions about the efficacy of chosen self‐management activities and perceptions of control in minimizing the consequences of cancer treatment. Severe, episodic or unexpected side effects coupled with perceptions of uncertainty, lack of control and lack of adequate preparation to engage in self‐management were identified as key barriers to engagement. Discussion and conclusion Participants’ reflection on, or appraisal of, their treatment‐related experiences and personal abilities, confidence and preferences to manage the impact of these shaped their subsequent engagement in self‐management. The findings highlight the importance of understanding individual’s self‐management experiences, perceptions, preferences, priorities and needs to help support, prepare and enable them to feel capable and confident to engage actively and effectively in self‐management.     

‘My special time’: Australian women's experiences of accessing a specialist perinatal and infant mental health service

Women who have few social supports, poor health and a history of stressful life events are at risk of poor mental health during the perinatal period. Infants of parents whose parenting capacity is compromised are also at risk of adverse outcomes. Specifically, poor perinatal mental health can impact maternal–infant attachment. To identify women at risk of poor perinatal mental health, psychosocial assessment and depression screening in the antenatal and early postnatal periods are recommended. This qualitative study is part of a larger mixed methods study, which explored two specialist perinatal and infant mental health (PIMH) services in New South Wales (Australia). Eleven women who had accessed and been discharged from a PIMH service participated in either face‐to‐face or telephone interviews. Data were transcribed verbatim and analysed thematically. One overarching theme, ‘my special time’ and three sub‐themes, ‘there is someone out there for me’, ‘it wasn't just a job’ and ‘swimming or stranded: feelings about leaving the service’, were identified. The themes describe the women's experiences of being a client of a PIMH service. Overall, women reported a positive experience of the service, their relationship with the clinician being a key component. Findings from this study highlight the importance of the relational aspect of care and support; however, women need self‐determination in all therapeutic processes, including discharge, if recovery and self‐efficacy as a mother are to be gained. Importantly, further research is needed about how clinicians model a secure base and how mothers emulate this for their infants.     

Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health‐related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age‐related health needs. The semi‐structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long‐term relationship with those they support was identified as being important to identifying any health‐related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health‐related communication.     

‘…it shows that there's no limits’: the psychological impact of co‐production for experts by experience working in youth mental health

Co‐production is commonly conceptualised as a more equal sharing of power and decision‐making between a dichotomy of service user and service provider, each bringing valuable and different assets to the process. Experts by experience lie in the overlap between this conceptually created duality, providing the services they now do by virtue of having once used services themselves. Previous related studies suggest that their involvement in co‐production could impact positively on their social capital, self‐esteem, self‐efficacy and life skills. However, no studies have been explicitly psychological or phenomenological in nature, and the theoretical basis for such outcomes remains under‐developed. This phenomenological study explored the psychological impact of co‐production for young people who were paid experts by experience for a young person's mental health charity in a large and diverse urban area in the UK, looking at the what of psychological impact, as well as the theoretical why and how. Semi‐structured interviews were conducted with a convenience sample of five males, with a mean age of 25 years. Interpretative phenomenological analysis yielded three master themes: the co‐production approach, I'm a professional and identities in transition. Participants valued a collegiate organisational approach that prioritised empowerment, agency and equality between experts by experience and ‘experts by qualification’, leading to a positive impact on their self‐efficacy and self‐esteem. Co‐production impacted fundamentally on their identity structure, enabling them to explore a new identity as a ‘professional’. The results are framed within identity process theory and point to the potential benefits of this model to co‐production.     

Effects of social group work with survivors of the Wenchuan earthquake in a transitional community

This research examined the effects of group work with survivors of the Wenchuan earthquake. The two groups studied were organised by social workers in a transitional community. One group was composed of older people and the other of women. The research adopted qualitative research methods. Data were collected by focus group meetings and in‐depth individual interviews. The 24 research participants were mainly asked to describe their lives before and after joining the groups. The findings indicated that disaster survivors had resilience to loss and trauma and could recover themselves. Group participation facilitated disaster survivors' self recovery and had positive effects on them. Before joining the groups, many members of both groups felt bored and depressed. After joining, they felt better physically and psychologically and enjoyed socialising with each other. Their lives became more meaningful and their social network was broadened and strengthened. The practical and policy implications of the study are noted and further research recommended. It was concluded that group work, in the form of recreational activities, is effective in alleviating disaster survivors' feelings of distress and depression, improving their psychosocial well‐being and fostering their self recovery.     

EVALUATION OF A SELF-PACED EDUCATION PACKAGE ON VIOLENCE AGAINST WOMEN FOR RURAL COMMUNITY-BASED HEALTH WORKERS

There are no reported education programs specifically focusing on the needs of rural health workers in the area of violence against women. The most commonly reported contact sought by women experiencing injuries and health problems associated with violence and abuse is with health workers. Women report a failure by health workers to make direct enquires, which may be due to their lack of education and confidence in responding to these issues. A convenience sample of 60 community-based rural health workers from a range of occupations and settings within the Wide Bay Health Region, Queensland, participated in the evaluation of a self-paced, distance education package on violence against women. The package contained seven modules. These included written and audio tape material, and activities that together formed a community development approach to addressing the needs in the participants' local community. Participants were given a mentor and teleconference support during the 8 weeks allocated to complete the package. A pre- and post-course evaluation, containing quantitative and qualitative data, was completed. Analysis of the quantitative data identified significant changes in participants' knowledge, and the qualitative data highlighted an increased sense of confidence in assisting women, forming support networks and using resources more effectively. Participants reported the most useful aspects of the package were: (i) modular- and user-friendly format; (ii) flexible, practical, health-focused content; and (iii) real world examples.