Exploring care from extended family through rural women's accounts of perinatal mental illness – a qualitative study with implications for policy and practice

Extended family often have an important role in caring for women experiencing perinatal mental illness; but rural women's perspectives are under-researched. We explored women's experiences of living in rural northern England and receiving care from extended family during periods of perinatal mental illness through 21 qualitative interviews. Key findings were that companionship, practical support - informal childcare and transport, and emotional support were important forms of care - filling gaps in formal service provision. Findings highlight women's needs for support from extended families in rural areas. The rural infrastructure and inequity in formal services can create vulnerability for women.     

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long‐term conditions

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.     

“They’re always in a hurry” – Older people´s perceptions of access and recognition in health and social care services

The article examines older people's perceptions of quality of life from the perspective of access and use of health and social care services. The data include focus group discussions with older people living alone. The data were analysed using thematic analysis focusing on the older people's collective views on health and social care services as supportive or restrictive factors for their quality of life. Two central themes were present in all the focus group discussions: the importance of accessing services and information regarding the services, and need for recognition within the services/by the professionals. Both themes were connected to the older people's desire to maintain autonomy in their everyday life despite increasing functional disabilities, which was seen as an important factor of quality of life. The older people felt that accessing and finding information about the services was difficult, and dependent on the professional's good will and the older person's own financial resources. Within the services, older people experienced a lack of recognition of their own personhood and individual needs. The participants felt that they were easily bypassed and left out of negotiations regarding their own care. The article highlights the importance of developing health and social care services and practices towards a more holistic approach recognising older people's individual needs.     

From pillar to post: homeless women's experiences of social care

This paper reports findings from a longitudinal study of homeless women. Thirty‐eight women were recruited with a retention rate of 58% over three rounds of interviews. Interviews explored specific events in women's lives, their current living arrangements and how their experiences and needs, including for social care, changed over time. Data were analysed thematically using a priori codes. Women reported a range of complex issues, consistent with experiences of deep social exclusion and received support from both statutory and voluntary agencies. Although women appreciated the support they received, many reported that services were fragmented and rarely personalised to their needs.     

Caregivers’ experiences of service transitions in adult mental health: An integrative qualitative synthesis

Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers’ experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co‐designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.     

Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study

Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis and respiratory failure, with a life expectancy of 2–4 years. In order to better understand how MND is managed in the community, we conducted a qualitative study to explore the challenges healthcare professionals encounter when managing MND in primary healthcare. Based on data from 15 semi‐structured interviews with primary healthcare professionals in Norway, we found that MND is viewed as a condition that requires exceptional effort and detailed planning. Healthcare professionals reported five main challenges in managing MND in primary healthcare: (i) building relationships with those giving and receiving care in the home; (ii) preventing caregiver burnout and breakdown; (iii) providing tailored care; (iv) ensuring good working conditions in patients’ homes; and (v) recruiting and retaining qualified nursing assistants. Healthcare professionals reported needing working conditions that allow them to tailor their approach to the personal, emotional and existential nature of care preferences of those living with MND. However, people with MND and their families were sometimes perceived by healthcare professionals to prefer a strictly task‐focused relationship with care providers. Such relationships limited the healthcare professionals’ control over the MND trajectory and their capacity to prevent family caregiver burnout and breakdown. Adequate resources, along with training and support of nursing assistants, may increase the continuity of nursing assistants. Responsiveness to patient and family needs may enhance collaboration and promote tailored primary care and support for patients with MND and their families.     

Examining the Health Care Experiences of Women Living with Human Immunodeficiency Virus (HIV) and Perceived HIV-Related Stigma

IntroductionThe increased incidence of human immunodeficiency virus (HIV) in women, particularly marginalized women, prompted research to examine women's health service experiences at a local outpatient clinic.MethodsA qualitative case study using semistructured interviews examined facilitators and barriers to health care services. Seventeen women living with HIV who accessed care at an outpatient HIV clinic in central west Ontario were interviewed. Thematic analysis was used to code health care experiences perceived as HIV-related stigma.ResultsWomen perceived HIV-related stigma when health care providers lacked basic HIV knowledge and failed to uphold the ethical principles of patient–provider relationships, resulting in women's disengagement from health care.ConclusionsWe propose a community-based participatory research framework to reform health care educational curriculum toward a culture of health care safety that is inclusive of people living with HIV.     

“Zip me up,and cool me down”: Molar narratives and molecular intensities in ‘helicopter’ mental health services

Experiences of the space–time dimensions of contemporary mental health services are shaped according to what we describe here as a ‘helicopter service’, where professionals drop down into service users' lives for short, often pre-determined bursts of time. This can create a system where users' experiences are observed and assessed from a more distanced and circumscribed perspective. This paper considers the implications of these systemic changes, using interviews with current UK service users. To help in the exploration of the complexities faced by service users', we use Deleuze and Guatarri's (1987) distinction between molar and molecular forms of organisation. A process oriented thematic analysis discusses: a) Affording narratives of distress: Molarity, monitoring and space in service interactions and b) Narratives in therapy: Compartmentalising the distressed self. Multiple aspects of the relationship between space and distress are explored. An understanding of experiences of distress beyond the boundaries of the molar, which considers its intensive, molecular and transformative nature, may help to open up engagement with the affective and emotional dimensions of mental health.     

Living in Institutional Care: Residents' Experiences and Coping Strategies

Insights into daily living in residential care settings are rare. This article draws on a qualitative dataset (semi-structured interviews and recordings of residents' council meetings) that gives a glimpse of the experiences and coping strategies of (older) people living in residential care. The data highlight the range of unmet needs of the residents, similar to the categories of physiological, safety, love, esteem, and self-actualization needs in Maslow's hierarchy of needs theory. Our analysis indicates that “higher” and “lower” needs are closely intertwined and mutually reinforcing and should therefore be accorded equal emphasis by professionals (including social workers) employed within residential care settings.     

A 'bittersweet pill to swallow': learning from mental health service users' responses to compulsory community care in England

Two forms of compulsory mental healthcare and supervision in the community are provided within the Mental Health Act 1983: Supervised Discharge Orders (SDOs) and guardianship. At a time when the Government are proposing to extend powers of supervision over people with severe mental illness in the community, it is appropriate that service users' experiences of existing legislation are examined and reported. Despite a range of literature that presents mental health service users' views and experiences, it remains unclear how service users respond to compulsory community mental healthcare in England. The present paper presents the findings of a qualitative investigation into service users' perceptions and experiences of living with SDOs. In the interviews, service users communicated their understanding of why mental health professionals placed them on the order and how their lives have been affected. Individual service users are capable of seemingly contradictory responses, simultaneously accepting and resisting the orders. This paper presents a typology of the range of responses. These responses are fatalism and resignation, dependency, ownership, bargaining, cooperation, resistance, and rejection. The study provides a model with which we can begin to understand how service users respond to compulsory community care where their options are legally constrained.     

Inflammatory bowel disease in young patients: challenges faced by black and minority ethnic communities in the UK

There is strong evidence indicating that inflammatory bowel disease (IBD) is increasing among black and minority ethnic (BME) communities. Despite this rise in prevalence, there is a paucity of research relating to ethnicity and IBD outside the USA. Furthermore, the symptoms of IBD are reported to start during childhood or adolescence in 20–25% of people with the condition. It is therefore important that young people's experiences of diagnosis, treatment and living with IBD are fully understood to ensure effective services and information provision. The study reported on in this paper was commissioned by a UK charity (Crohn's and Colitis UK) with the aim of increasing understanding of the specific issues and service needs of young people with IBD from BME communities. Empirical research entailed in‐depth semi‐structured interviews with 20 young people from BME groups accessed through gastroenterology departments at three collaborating NHS hospitals in England serving ethnically diverse populations. Interviews were carried out from June to December 2010 and sought to capture young people's views with IBD. A thematic analysis of their experiences identified many commonalities with other young people with IBD, such as the problematic route to formal diagnosis and the impact of IBD on education. The young people also experienced tensions between effective self‐management strategies and cultural norms and practices relating to food. Moreover, the ability of parents to provide support was hampered for some young people by the absence of culturally competent services that were responsive to the families’ communication needs. The findings highlight the need for more culturally appropriate information concerning IBD, and improved responsiveness to young people with IBD within primary care and the education system, as well as culturally competent messaging relating to the specific nature of the condition among the wider South Asian and black communities.     

“Eyes Wide Shut”: Narratives of Women Living with Hepatitis C in Australia

ABSTRACT

Hepatitis C is the leading notifiable infectious disease in Australia and in the last few years, the number of new diagnoses among young women is beginning to outnumber men. For many, infection with hepatitis C virus (HCV) results in a chronic condition, which, in addition to a range of symptoms, carries with it the stigma attached to injecting drug use. Despite the growing prevalence of HCV, women's health has barely begun to address the gender specific impact of this illness on women. We report the results of a qualitative study of young women's experiences of living with HCV with a specific focus on the meaning of this condition and its impact on their lives. In 1999–2000, twenty-five in-depth interviews were conducted with women between the ages of 18 and 43 years, who were current or past injecting drug users and who had been diagnosed with HCV. One focus group discussion was held with health workers who provide treatment and care to this population. A number of key issues were identified that women believed impacted negatively on their lived experiences of HCV. Of most concern was the meaning of HCV and the social stigma attached. Stigma coupled with the lack of knowledge and awareness among health professionals and the high cost of treatment contributed to women's reluctance to seek support and care. HCV has yet to be taken up by the women's health movement as a key issue, especially for young women and we argue that this trend needs to be reversed.     

Is it time to abandon care planning in mental health services? A qualitative study exploring the views of professionals,service users and carers

Background

It has been established that mental health‐care planning does not adequately respond to the needs of those accessing services. Understanding the reasons for this and identifying whose needs care plans serve requires an exploration of the perspectives of service users, carers and professionals within the wider organizational context.

Objective

To explore the current operationalization of care planning and perceptions of its function within mental health services from the perspectives of multiple stakeholders.

Settings and participants

Participants included 21 mental health professionals, 29 service users and 4 carers from seven Mental Health Trusts in England. All participants had experience of care planning processes within secondary mental health‐care services.

Methods

Fifty‐four semi‐structured interviews were conducted with participants and analysed utilizing a qualitative framework approach.

Findings

Care plans and care planning were characterized by a failure to meet the complexity of mental health needs, and care planning processes were seen to prioritize organizational agendas and risk prevention which distanced care planning from the everyday lives of service users.

Discussion and conclusions

Care planning is recognized, embedded and well established in the practices of mental health professionals and service users. However, it is considered too superficial and mainly irrelevant to users for managing mental health in their everyday lives. Those responsible for the planning and delivery of mental health services should consider ways to increase the relevance of care planning to the everyday lives of service users including separating risk from holistic needs assessment, using support aids and utilizing a peer workforce in this regard.     

Beyond the definition of formal care: Informal care arrangements among older swedes who are not family

This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.     

A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy

Multiple sclerosis (MS) is a chronic degenerative condition, with heterogeneous symptoms, and an unpredictable prognosis. Previous literature suggests patients' experiences of healthcare are unsatisfactory. Primary care may play a key role in the management of people with MS (PwMS); however, provision of services for PwMS has received little focus in the primary care literature. This study aimed to explore perspectives and experiences of PwMS and healthcare professionals of UK healthcare services for MS. Semi‐structured interviews were conducted with 24 PwMS, 13 Practice Nurses, 12 General Practitioners and 9 MS Specialist Nurses in northern England, between October 2012 and April 2014. Participants were purposively selected. Data were analysed thematically using constant comparative analysis. The theoretical framework of candidacy was used to interrogate data, with themes mapping onto the National Institute for Health and Care Excellence (NICE) guideline for MS. How PwMS interpreted symptoms as leading to candidacy for care dictated help‐seeking. PwMS required additional support in identifying symptoms due to MS. Participants reported poor experiences of care including poor access to services, poor continuity of care and poor interpersonal interactions with perceptions of limited person‐centredness. PwMS and professionals identified that MS‐related disability and progression of symptoms required responsive care. Relational continuity enabled PwMS to feel understood, and professionals to holistically appraise symptoms and progression. In conclusion, continuity and patient‐centredness of care are central to positive healthcare experiences for PwMS and professionals. Services need to be more accessible to ensure responsive and effective MS management. This study provides unique findings on the role of primary care for PwMS, and the relationship between findings and MS NICE guideline recommendations with implications for service delivery in the community.