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.     

Charismatic authority in modern healthcare: the case of the ‘diabetes specialist podiatrist’

Professional specialisation is broadly considered to result from increased complexity in professional knowledge and to be linked to specialist education, formalised credentials and registration. However, the degree of formal organisation may vary across professions. In healthcare, although medical specialisation is linked to rigorous selection criteria, formal training programmes and specialist registration, some forms of specialisation in the allied health professions are much less formal. Drawing on Weber’s concept of charismatic authority, the establishment of a specialist role in podiatry, the ‘diabetes specialist podiatrist’, in the absence of codified or credentialed authority, is explored. ‘Charismatic’ leaders in podiatry, having attracted a following of practitioners, were able to constitute a speciality area of practice in the absence of established career pathways and acquire a degree of legitimacy in the medical field of diabetology.     

Risk,trust and patients’ strategic choices of healthcare practitioners

Research on patients’ choice of healthcare practitioners has focussed on countries with regulated and controlled healthcare markets. In contrast, low‐ and middle‐income countries have a pluralistic landscape where untrained, unqualified and unlicensed informal healthcare providers (IHPs) provide significant share of services. Using qualitative data from 58 interviews in an Indian village, this paper explores how patients choose between IHPs and qualified practitioners in the public and formal private sectors. The study found that patients’ choices were structurally constrained by accessibility and affordability of care and choosing a practitioner from any sector presented some risk. Negotiation and engagement with risks depended on perceived severity of the health condition and trust in practitioners. Patients had low institutional trust in public and formal private sectors, whereas IHPs operated outside any institutional framework. Consequently, people relied on relational or competence‐derived interpersonal trust. Care was sought from formal private practitioners for severe issues due to high‐competence‐based interpersonal trust in them, whereas for other issues IHPs were preferred due to high relationship‐based interpersonal trust. The research shows that patients develop a strategic approach to practitioner choice by using trust to negotiate risks, and crucially, in low‐ and middle‐income countries IHPs bridge a gap by providing accessible and affordable care imbued with relational–interpersonal trust.     

‘Underclassism’ and access to healthcare in urban centres

In this article, we draw on findings from an ethnographic study that explored experiences of healthcare access from the perspectives of Indigenous and non‐Indigenous patients seeking services at the non‐urgent division of an urban emergency department (ED) in Canada. Our aim is to critically examine the notion of ‘underclassism’ within the context of healthcare in urban centres. Specifically, we discuss some of the processes by which patients experiencing poverty and racialisation are constructed as ‘underclass’ patients, and how assumptions of those patients as social and economic Other (including being seen as ‘drug users’ and ‘welfare dependents’) subject them to marginalisation, discrimination, and inequitable treatment within the healthcare system. We contend that healthcare is not only a clinical space; it is also a social space in which unequal power relations along the intersecting axes of ‘race’ and class are negotiated. Given the largely invisible roles that healthcare plays in controlling access to resources and power for people who are marginalised, we argue that there is an urgent need to improve healthcare inequities by challenging the taken‐for‐granted assumption that healthcare is equally accessible for all Canadians irrespective of differences in social and economic positioning.     

‘A fifty mile round trip to change a lightbulb’: An exploratory study of carers’ experiences of providing help,care and support to families and friends from a distance

While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April–November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1 hr travel time (each way) from the person they support. One hundred and twenty‐eight participant responses were analysed. Qualitative (thematic) analysis identified that ‘distance carers’ carry out multiple care tasks, both when with, and apart from, the person they care for. Distance creates specific challenges for carers who have to work to ‘bridge the distance gap’ and who cannot ‘just drop in’ and see the person they support. Distance further exposes carers to emotional, financial and temporal demands. The use of technologies or the availability of a wider support network may support distance carers, and some explore the viability of relocation. However, these potential support strategies were identified as ‘fragile’ and at risk of breaking down. Despite the challenges identified, distance carers also reported satisfactions derived from supporting their relative/friend. While the numbers of those providing distance care are unknown, this research suggests that this is a significant carer group, whose needs should be recognised in health and social care policy, practice and research.     

‘It was a big monetary cut’—A qualitative study on financial toxicity analysing patients’ experiences with cancer costs in Germany

Receiving information about expected costs promptly after a cancer diagnosis through psycho‐oncology care or social counselling is crucial for patients to be prepared for the financial impact. Nevertheless, less is known about financial impacts for cancer patients in countries with statutory health insurance. This study aims to explore the full scope of costs that constitute the financial impact of a cancer diagnosis in Germany and to identify the reasons for high financial decline. Semistructured interviews with 39 cancer patients were conducted between May 2017 and April 2018. Narratives were analysed via qualitative content analysis. Several factors influenced cancer patients’ indirect costs and direct medical and non‐medical costs. For many patients, these changes resulted in higher indirect costs caused by income losses, especially when surcharges for shift work, travel expenses or company benefits ceased and were not reimbursed. Higher direct medical costs were caused by co‐payments and additional non‐refundable costs. Non‐medical costs were reported to increase for some patients and to decrease for others, as for example, leisure activity costs either increasing because of pampering oneself to cope with the diagnosis and undergoing therapy or decreasing because of not being able to participate in leisure activities during therapy. When analysing the financial impacts of individuals' total costs, we found that some patients experienced no financial decline or an overall financial increase. Most patients experienced overall higher costs, and income loss was the main driver of a high financial decline. Nevertheless, decreased non‐medical costs due to lower work‐related and leisure activity costs could compensate for these higher costs. Cancer patients are confronted with a variety of changes in their financial situations, even in countries with statutory health insurance. Screening for cancer patients with a high risk of financial decline should consider any effects on indirect costs and direct medical and nonmedical costs.     

“Automatic assumption of your gender,sexuality and sexual practices is also discrimination”: Exploring sexual healthcare experiences and recommendations among sexually and gender diverse persons in Arctic Canada

Sexual and mental health disparities are reported in Arctic Canada as in other Arctic regions that experience shared challenges of insufficient healthcare resources, limited transportation, and a scarcity of healthcare research. Lesbian, gay, bisexual, transgender, and queer persons (LGBTQ+) report sexual and mental health disparities in comparison with their heterosexual and cisgender counterparts, and these disparities may be exacerbated in rural versus urban settings. Yet limited research has explored sexual healthcare experiences among LGBTQ+ persons in the Arctic who are at the juncture of Arctic and LGBTQ+ health disparities. We conducted a qualitative study from May 2015 to October 2015 with LGBTQ+ persons in the Northwest Territories, Canada that involved in‐depth individual interviews with LGBTQ+ youth (n = 16), LGBTQ+ adults (n = 21), and key informants (e.g. coaches, teachers, nurses, social workers, and healthcare providers) (n = 14). We conducted thematic analysis, a theoretically flexible approach that integrates deductive and inductive approaches, to identify and map themes in the data. Findings reveal geographical, social, and healthcare factors converge to shape healthcare access. Specifically, the interplay between heterosexism and cisnormativity, intersectional forms of stigma, and place limited LGBTQ+ persons’ sexual healthcare access and produced negative experiences in sexual healthcare. Limited healthcare facilities in small communities resulted in confidentiality concerns. Heteronormativity and cisnormativity constrained the ability to access appropriate sexual healthcare. LGBTQ+ persons experienced LGBTQ+, HIV, and sexually transmitted infections stigma in healthcare. Participants also discussed healthcare provider recommendations to better serve LGBTQ+ persons: non‐judgment, knowledge of LGBTQ+ health issues, and gender inclusivity. Findings can inform multi‐level strategies to reduce intersecting stigma in communities and healthcare, transform healthcare education, and build LGBTQ+ persons’ healthcare navigation skills.     

Understanding carers’ lived experience of stigma: the voice of families with a child on the autism spectrum

Existing research suggests that there are several unique challenges associated with caring for a child on the autism spectrum. Despite a growing evidence base regarding autism spectrum disorders and their increasing prevalence, children on the autism spectrum and their families continue to perceive stigmatisation from various sources throughout the community. These perceptions of stigma can profoundly impact the quality of life of these children and their carers alike. This exploratory study sought to investigate carers’ perceptions of stigma in caring for a child with high functioning autism. Fifteen carers from Sydney and the South Coast regions of New South Wales, Australia, participated in semi‐structured interviews regarding their caring experiences and any perceived encounters with stigma. Four domains of stigmatising experiences were identified: (i) lack of knowledge, (ii) judgement, (iii) rejection and (iv) lack of support. These domains were each reported to exist in four main contexts: (i) school, (ii) public, (iii) family and (iv) friends. These domains and contexts established a framework which provided a detailed account of how and where carers felt stigmatised, including the suggestion of a stigmatising pathway through the four domains. The main contexts in which stigma was perceived also appeared to be related, with those carers who experienced stigma in one context being more likely to report similar experiences in other contexts. Any attempts to empower carers in the face of stigmatisation should therefore consider each of these domains, the pathway that connects them and the relationship between different social contexts. Through identifying this pathway, supportive services can be acutely aware of how carers may perceive potentially stigmatising experiences and therefore provide appropriate interventions or support for the relevant stage of the pathway.     

Being ‘fat’ in today’s world: a qualitative study of the lived experiences of people with obesity in Australia

Objective To develop an in‐depth picture of both lived experience of obesity and the impact of socio‐cultural factors on people living with obesity. Design Qualitative methodology, utilizing in‐depth semi‐structured interviews with a community sample of obese adults (body mass index ≥30). Community sampling methods were supplemented with purposive sampling techniques to ensure a diverse range of individuals were included. Results Seventy‐six individuals (aged 16–72) were interviewed. Most had struggled with their weight for most of their lives (n = 45). Almost all had experienced stigma and discrimination in childhood (n = 36), as adolescents (n = 41) or as adults (n = 72). About half stated that they had been humiliated by health professionals because of their weight. Participants felt an individual responsibility to lose weight, and many tried extreme forms of dieting to do so. Participants described an increasing culture of ‘blame’ against people living with obesity perpetuated by media and public health messages. Eighty percent said that they hated or disliked the word obesity and would rather be called fat or overweight. Discussion and Conclusion There are four key conclusions: (i) the experiences of obesity are diverse, but there are common themes, (ii) people living with obesity have heard the messages but find it difficult to act upon them, (iii) interventions should be tailored to address both individual and community needs and (iv) we need to rethink how to approach obesity interventions to ensure that avoid recapitulating damaging social stereotypes and exacerbating social inequalities.     

At the margins of biomedicine: the ambiguous position of ‘Registered Medical Practitioners’ in rural Indian healthcare

This analysis challenges a tendency in public health and the social sciences to associate India's medical pluralism with a distinction between biomedicine, as a homogeneous entity, and its non‐biomedical ‘others’. We argue that this overdrawn dichotomy obscures the important part played by ‘informal’ biomedical practice, an issue with salience well beyond India. Based on a qualitative study in rural Andhra Pradesh, South India, we focus on a figure little discussed in the academic literature – the Registered Medical Practitioner (RMP) – who occupies a niche in the medical market‐place as an informal exponent of biomedical treatment. We explore the significance of these practitioners by tracking diagnosis and treatment of one increasingly prominent medical ‘condition’, namely diabetes. The RMP, who despite the title is rarely registered, sheds light on the supposed formal‐informal sector divide in India's healthcare system, and its permeability in practice. We develop our analysis by contrasting two distinctive conceptualisations of ‘informality’ in relation to the state in India – one Sarah Pinto's, the other Ananya Roy's.     

‘The living death of Alzheimer's’ versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse

Understanding dementia is a pressing social challenge. This article draws on the ‘Dementia talking: care conversation and communication’ project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets – a corpus of 350 recent UK national newspaper articles and qualitative data derived from in‐depth interviews with informal carers. These data were analysed using a thematic discursive approach. A ‘panic‐blame’ framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia ‘preventative’ behaviour in media discourse is problematic, especially in comparison to other more ‘controllable’ and treatable chronic conditions. Engagement with, and critique of, the nascent panic‐blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers.     

Access to therapy services for people with disability in rural Australia: a carers’ perspective

In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban‐dwelling counterparts. This cross‐sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services. A total of 166 carers participated. Respondents were mostly the carers of a son or daughter (83.6%) , the person they care for had an average age of 17.6 years (range 1–69 years) and more than half were males (56%). The majority of people with disability (73.5%) had received therapy services in the last 2 years. Waiting time and distance travelled to access physiotherapy, speech and occupational therapy services varied. People with disability had to wait an average of 6.6 months to receive speech pathology and had to travel an average of 2.6 hours to receive physiotherapy. The main provider of all services was the specialist disability government department, except for psychology, which is mainly provided in the private sector. From the carers’ perspective, availability and accessibility to services are limited. Carers noted that availability of services was more restricted once people with disability reached adulthood. Lack of choice and frustration with the lack of availability of specialist disability services was reported frequently. Carers believed that timely allied health intervention prevented the development of more severe or complicated conditions that had a greater impact on carers, families, communities and the person with disabilities.     

‘When coercion moves into your home’ – a qualitative study of patient experiences with outpatient commitment in Norway

The use of coercion on people with mental health problems is a serious intervention, and a reduction in its use is a declared goal in mental healthcare. Yet, many countries have introduced expanded powers of coercion in recent years, including outpatient commitment (OC). However, the evidence of the effectiveness of OC is inconclusive, and little is known about how patients experience OC schemes. The objective of this qualitative study was to explore (i) patients' experiences with OC, and (ii) how routines in care and health services affect patients' everyday living. The data were collected in 2011–2012 and included 11 qualitative in‐depth interviews with patients subject to OC. The study used a narrative approach to interviews and a thematic narrative analysis. Participants generally complied with the OC requirements because of the clear and secure framework of OC, and also because they believed that the alternative would be involuntary hospitalisation. No one reported physical force, but coercion was experienced as limitation of freedom of action through excessive control and little patient influence or participation in their own treatment. Factors affecting patients' freedom of action under OC should be taken into account when the imposition of an OC order is considered.     

‘What ever I do it’s a lost cause.’ The emotional and behavioural experiences of individuals who are ulcer free living with the threat of developing further diabetic foot ulcers: a qualitative interview study

Objective Individuals who have had one diabetic foot ulcer (DFU) are at high risk for developing further DFUs. This study was designed to examine the emotional and behavioural consequences of living with this heightened risk of re‐ulceration. Participants and setting Fifteen women and men living in south‐west England were interviewed at home or at the university by an academic psychologist. Design Interviews were audiotaped and transcribed verbatim. Thematic analysis using the constant comparative method was employed for data analysis. Results Participants reported having little perceived control in preventing further DFUs. This lack of control was associated with a range of negative emotions including fears and worries about developing further foot ulcers, amputation and guilt for the past neglect. Tensions were present between participants’ beliefs and reported behaviours, that is, what they felt they ought to be doing and what they were actually doing to care for their feet; most engaged in ‘strategic adherence’, that is, conducting a trade‐off between living a normal life and following foot‐care advice. Conclusion A lack of perceived control appears central to the emotional and behavioural responses of individuals living with the threat of re‐ulceration. We propose that these responses may serve to increase individuals’ risk of re‐ulceration and that these ‘risk factors’ should be considered part of the management of this patient group.     

‘Your whole life is lived through your teeth’: biographical disruption and experiences of tooth loss and replacement

The experience and meaning of tooth loss and replacement has varied historically and culturally but has received relatively little attention from social scientists. Our study set out to understand these experiences in the context of the arrival of newer, dental implant treatments. Semi‐structured qualitative interviews were carried out with 39 men and women who had experienced tooth loss and replacement. A thematic analysis was sensitised by previous sociological work on chronic illness, particularly Bury's notion of biographical disruption. We found that while for some individuals the loss of a tooth was relatively insignificant, for others it was devastating and disruptive. In seeking to understand this difference, the concept of biographical disruption was a helpful analytical tool. Our analysis identified two forms of disruption. The first related to the meanings of tooth loss (the neglected mouth) and denture wearing (a marker of old age). The second, embodied, disruption concerned the relationship between the self and mouth in those wearing dentures (the invaded, unreliable mouth) and could occur even where tooth loss and denture wearing had been biographically anticipated.     

Front‐line perspectives on ‘joined‐up’ working relationships: a qualitative study of social prescribing in the west of Scotland

Cross‐sector collaboration has been promoted by government policies in the United Kingdom and many western welfare states for decades. Literature on joint working has focused predominantly on the strategic level, neglecting the role of individual practitioners in putting ‘joined‐up working’ into practice. This paper takes the case of ‘social prescribing’ in the west of Scotland as an instance of joined‐up working, in which primary healthcare professionals are encouraged to refer patients to non‐medical sources of support in the third sector. This study draws on social capital theory to analyse the quality of the relationships between primary healthcare professionals and third sector practitioners. Eighteen health professionals and 15 representatives of third sector organisations participated in a qualitative interview study. Significant barriers to collaborative working were evident. The two stakeholder groups expressed different understandings of health, with few primary healthcare professionals considering non‐medical sources of support to be useful or relevant. Health professionals were mistrustful of unknown third sector organisations, and concerned about their accountability for referrals that were not successful or positive for the patient. Third sector practitioners sought to build trust through face‐to‐face interactions with health professionals. However, primary healthcare professionals and third sector practitioners were not connected in effective networks. We highlight the ongoing imbalance of power between primary healthcare professionals and third sector organisations. Strategic collaborations should be complemented by efforts to build shared understandings, trust and connections between the diverse front‐line workers whose mutual co‐operation is necessary to achieve effective joined‐up working.