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.     

‘You say treatment,I say hard work’: treatment burden among people with chronic illness and their carers in Australia

The aim of this study was to explore treatment burden among people with a variety of chronic conditions and comorbidities and their unpaid carers. The burden of living with ongoing chronic illness has been well established. However, the burden associated with proactively treating and managing chronic illness, commonly referred to as ‘treatment burden’, is less understood. This study helps to bridge this gap in our understanding by providing an in‐depth analysis of qualitative data collected from a large sample of adults from diverse backgrounds and with various chronic conditions. Using semi‐structured in‐depth interviews, data were collected with a large sample of 97 participants that included a high representation of people from culturally and linguistically diverse backgrounds and indigenous populations across four regions of Australia. Interviews were conducted during May–October 2012, either face to face (n = 49) or over the telephone (n = 48) depending on the participant's preference and location. Data were analysed using an iterative thematic approach and the constant comparison method. The findings revealed four interrelated components of treatment burden: financial burden, time and travel burden, medication burden and healthcare access burden. However, financial burden was the most problematic component with the cost of treatment being significant for most people. Financial burden had a detrimental impact on a person's use of medication and also exacerbated other types of burden such as access to healthcare services and the time and travel associated with treatment. The four components of treatment burden operated in a cyclical manner and although treatment burden was objective in some ways (number of medications, and time to access treatment), it was also a subjective experience. Overall, this study underscores the urgent need for healthcare professionals to identify patients overwhelmed by their treatment and develop ‘individualised’ treatment options to alleviate treatment burden.     

Evaluation of trained volunteer doula services for disadvantaged women in five areas in England: women's experiences

Disadvantaged childbearing women experience barriers to accessing health and social care services and face greater risk of adverse medical, social and emotional outcomes. Support from doulas (trained lay women) has been identified as a way to improve outcomes; however, in the UK doula support is usually paid‐for privately by the individual, limiting access among disadvantaged groups. As part of an independent multi‐site evaluation of a volunteer doula service, this study examined women's experiences of one‐to‐one support from a trained volunteer doula during pregnancy, labour and the post‐natal period among women living in five low‐income communities in England. A mixed methods multi‐site evaluation was conducted with women (total n = 137) who received the service before December 2012, using a combination of questionnaires (n = 136), and individual or group interviews (n = 12). Topics explored with women included the timing and nature of support, its impact, the relationship with the doula and negative experiences. Most women valued volunteer support, describing positive impacts for emotional health and well‐being, and their relationships with their partners. Such impacts did not depend upon the volunteer's presence during labour and birth. Indeed, only half (75/137; 54.7%) had a doula attend their birth. Many experienced volunteer support as a friendship, distinct from the relationships offered by healthcare professionals and family. This led to potential feelings of loss in these often isolated women when the relationship ended. Volunteer doula support that supplements routine maternity services is potentially beneficial for disadvantaged women in the UK even when it does not involve birth support. However, the distress experienced by some women at the conclusion of their relationship with their volunteer doula may compromise the service's impact. Greater consideration is needed for managing the ending of a one‐to‐one relationship with a volunteer, particularly given the likelihood of it coinciding with a period of heightened emotional vulnerability.     

Unmet health and rehabilitation needs of people with long‐term neurological conditions in Queensland,Australia

The survival and life expectancy rates of people with traumatic and degenerative neurological conditions are increasing, sometimes up to several decades. Yet compared to the general population, people with a disability continue to experience poorer health and are at greater risk of developing secondary health problems and facing barriers to services they require. These trends have significant implications for provision of health and rehabilitation services. In this study, the adequacy of health and rehabilitation services provided to people with long‐term neurological conditions and their unmet needs were explored from the perspectives of individual users, their nominated family members and key service providers. A qualitative research design with maximum variation sampling was used. Data were collected from semi‐structured interviews with 65 participants comprising 25 long‐term care service users, nominated family members or friends (n = 22) and care service providers (n = 18) in Queensland, Australia. All service users needed assistance with usual daily activities, and 22 were wheelchair dependent. The hours of funded personal care ranged from 2 to 201 hours per week. Data were analysed using framework analysis. Participants generally perceived that specialist medical and hospital services were adequate and satisfactory. They valued supportive health and rehabilitation professionals and receiving client‐centred physical rehabilitation. However, the majority of participants (n = 17) had perceived unmet needs for physical rehabilitation (n = 14), other health or rehabilitation services (n = 10) or counselling (n = 6). Community‐based physical maintenance rehabilitation was often perceived as inadequate, costly or inconveniently located. Participants highlighted the importance of personal and family counselling and information provision at time points such as diagnosis. The findings contribute to the limited international evidence on the gaps in health and rehabilitation services for people with neurological conditions receiving lifetime care services in the community. A continuum of integrated rehabilitation services to minimise avoidable impairments, optimise independence and functioning, and sustain quality of life is warranted.     

A qualitative exploration of barriers to HIV prevention,treatment and support: Perspectives of transgender women and service providers

Transgender (trans) women experience barriers to access to HIV care, which result in their lower engagement in HIV prevention, treatment and support relative to cisgender people living with HIV. Studies of trans women's barriers to HIV care have predominantly focused on perspectives of trans women, while barriers are most often described at provider, organisation and/or systems levels. Comparing perspectives of trans women and service providers may promote a shared vision for achieving health equity. Thus, this qualitative study utilised focus groups and semi-structured interviews conducted 2018–2019 to understand barriers and facilitators to HIV care from the perspectives of trans women (n = 26) and service providers (n = 10). Barriers endorsed by both groups included: (a) anticipated and enacted stigma and discrimination in the provision of direct care, (b) lack of provider knowledge of HIV care needs for trans women, (c) absence of trans-specific services/organisations and (d) cisnormativity in sexual healthcare. Facilitators included: (a) provision of trans-positive trauma-informed care, (b) autonomy and choice for trans women in selecting sexual health services and (c) models for trans-affirming systems change. Each theme had significant overlap, yet nuanced perspective, between trans women and service providers. Specific recommendations to improve HIV care access for trans women are discussed. These recommendations can be used by administrators and service providers alike to work collaboratively with trans women to reduce barriers and facilitators to HIV care and ultimately to achieve health equity for trans women.     

Older lesbian and gay adults’ perceptions of barriers and facilitators to accessing health and aged care services in Australia

Older lesbian and gay people can face considerable marginalisation, which may affect their perceptions and experiences of accessing health and aged care services. To inform strategies promoting accessibility, this study aimed to investigate perceived barriers and facilitators to health and aged care service access among older lesbian and gay adults. A sample of 752 cisgender lesbian women and gay men aged 60 years and older living in Australia responded to questions on a broad range of potential barriers and facilitators to service access. Several barriers and facilitators were commonly reported, with some differences between the women and the men. LGBTI inclusiveness was among commonly reported concerns. A majority of participants reported a lack of LGBTI-inclusive service providers and professionals as a barrier. A majority also reported a perceived lack of professionals adequately trained and competent to work with LGBTI individuals, with significantly more women than men indicating this as a barrier. Almost all participants indicated LGBTI-inclusive mainstream services as a facilitator for access. In all, inclusiveness appears to be a key issue for service access among older lesbian and gay people, which may need to be further addressed by service providers and policy makers for improving service accessibility.     

The healthcare experiences of Koreans living in North Carolina: a mixed methods study

This study examined the healthcare experiences of Korean immigrants aged 40–64 living in the North Carolina Triangle area of the Southeastern United States. Using a mixed methods design, we collected quantitative data via a questionnaire from 125 participants and conducted a focus group with 10 interviewees from December 2010 to February 2011. The quantitative data were analysed using t‐tests and chi‐square tests, and a thematic analysis was used for the focus group study. Questionnaire findings showed that only 27.2% had sufficient English skills to communicate adequately. Participants with insurance were significantly more likely to be employed (P < 0.001), had higher incomes (P = 0.011) and higher education (P < 0.001), and had greater English‐speaking ability (P = 0.011) than those without insurance. Participants who did not use healthcare services showed significantly less knowledge (P < 0.001) of and less satisfaction (P = 0.034) with the healthcare system than those using healthcare services. Sixty‐two participants (49.6%) reported having no health insurance for one or more of the following reasons: high costs (75.8%), medical tourism (22.6%) and lack of information or knowledge (6.5%). The following themes emerged from the data collected during the focus group: (i) barriers to utilisation of healthcare services; (ii) facilitators of utilisation of healthcare services; and (iii) social support seeking for health management. Our mixed methods study findings indicate that healthcare disparities exist among Korean immigrants and that a number of factors, including health literacy, may contribute to their poor health outcomes. Continued collaboration among community members, healthcare professionals and academicians is needed to discuss the community's health concerns and to develop sustainable programmes that will ensure meaningful access to care for those with limited English proficiency and medically underserved populations.     

Living with motor neurone disease: lives, experiences of services and suggestions for change

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi‐structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through ‘snowball’ sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio‐taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals’ attitudes and approaches, and professionals’ knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.     

Good practice in social care: the views of people with severe and complex needs and those who support them

This paper reports findings drawn from a study of good practice in English social care for adults with disability and older people with severe and complex needs. People with severe and complex needs are a relatively small proportion of adult social care service users, but they are growing in numbers and have resource‐intensive needs. The study involved qualitative research with adults with disability and older people with severe and complex needs, family carers and members of specialist organisations (n = 67), focusing on the features of social care services they considered to be good practice. Data were collected between August 2010 and June 2011. The approach to data collection was flexible, to accommodate participants' communication needs and preferences, including face‐to‐face and telephone interviews, Talking Mats^© sessions and a focus group. Data were managed using Framework and analysed thematically. Features of good practice were considered at three levels: (i) everyday support; (ii) service organisation; and (iii) commissioning. Findings relating to the first two of these are presented here. Participants emphasised the importance of person‐centred ways of working at all levels. Personalisation, as currently implemented in English social care, aims to shift power from professionals to service users through the allocation of personal budgets. This approach focuses very much on the role of the individual in directing his/her own support arrangements. However, participants in this study also stressed the importance of ongoing professional support, for example, from a specialist key worker or case manager to co‐ordinate diverse services and ensure good practice at an organisational level. The paper argues that, despite the recent move to shift power from professionals to service users, people with the most complex needs still value support from professionals and appropriate organisational support. Without these, they risk being excluded from the benefits that personalisation, properly supported, could yield.     

Families' and healthcare professionals' perceptions of healthcare services for children and young people with medically unexplained symptoms: a narrative review of the literature

Children and young people frequently report physical complaints that have no observable physical pathology known as medically unexplained symptoms (MUS). Research suggests that MUS are associated with substantial physical and psychological impairments and may have a negative impact on children's and young people's functional status and well‐being in the long term. Due to the potentially complex needs of this group, children and young people with MUS may require timely access to suitable health and social care services to effectively manage symptoms and achieve their academic, social and personal potential. Families and professionals can offer important insights into the availability and appropriateness of current community and specialist health and social care services. This review is the first critical evaluation and synthesis of research that has examined families' and healthcare professionals' (HCP) perceptions of healthcare services for children and young people with MUS. A systematic search of electronic databases and manual searches of key journals and reference lists identified 17 papers from 15 studies for inclusion in the review. The review highlights the paucity of rigorously conducted research on this topic. Studies have been narrowly focused on the views of a homogeneous group of mothers and young people attending single centres. There has been some attempt to examine doctors' views, but the perceptions of children, fathers and health and social care professionals are absent or under‐represented, and multi‐site and longitudinal studies are lacking. Thematic analysis of the results from the included studies suggests that knowledge, communication, health beliefs and healthcare settings are factors that influence families' and HCPs' perceptions of services. Families report dissatisfaction with some HCPs' approach to managing MUS. The findings suggest that children and young people with MUS are at risk of receiving suboptimal care and support because there is insufficient research to inform high‐quality, evidence‐based practice.     

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.     

The influence of perceived accessibility and expertise of healthcare professionals,and service austerity,on mothers' decision-making

Mothers often make key decisions regarding their children's health. They hold core beliefs and attitudes towards healthcare providers, relying on healthcare services to provide support, advice and reassurance. It is crucial that health providers form authentic relationships with families with young children, in order to effectively provide healthcare, support and information as needed. In this paper, we explore mothers' views on the accessibility and expertise of healthcare professionals caring for their child's health. A case study, using a geographic post code as the case boundary was used. Focus groups and semi-structured interviews with mothers of children aged under five years old were conducted. Participants (n = 33) were recruited from local playgroups and six focus groups (19 participants) and 14 individual interviews were conducted. Qualitative data were analysed using thematic analysis. General Practice (including general practitioners [GPs] and practice nurses) was considered to be the preferred option when seeking timely healthcare advice and information. Participant mothers were open to accessing professional advice concerning their child's health, from a range of health professionals and understood the role and potential contribution of various health professionals. However, some factors, influenced mothers' decision-making. These were captured in three themes: maternal perceptions of GPs as accessible experts; practice nurses as approachable and reassuring sources of advice; and difficulty in accessing health visiting services primarily due to service funding cuts. Further investment in primary care services, including expansion of the practice nurse role and an increase in health visiting service provision, may help to provide sufficient support for mothers seeking healthcare advice. In addition, healthcare service strategies, which engage with mothers and ensure nurses are recognised as knowledgeable, accessible, supportive and a suitable alternative to GPs, would be beneficial.     

Therapeutic citizens and clients: diverging healthcare practices in Malawi's prenatal clinics

This article examines how HIV policies and the funding priorities of global institutions affect practices in prenatal clinics and the quality of healthcare women receive. Data consist of observations at health centres in Lilongwe, Malawi and interviews with providers (N = 37). I argue that neoliberal ideology, which structures the global health field, produces a fragmented healthcare system on the ground. Findings show two kinds of healthcare practices within the same clinic: donor‐funded NGOs took on HIV services while government providers focused on prenatal care. NGO practices were defined by surveillance, where providers targeted pregnant HIV‐positive women and intensively monitored their adherence to drug treatment. In contrast, state‐led practices were defined by rationing. Government providers worked with all pregnant women, but with staff and resource shortages, they limited time and services for each patient in order to serve everyone. This paper builds on concepts of therapeutic citizenship and clientship by exploring how global health priorities produce different conditions, practices and outcomes of NGO and state‐led care.     

The providers’ profile of the disability support workforce in New Zealand

To understand one of the predominant groups supporting people with disabilities and illness, this study examined the profile of New Zealand paid caregivers, including their training needs. Paid caregivers, also known as healthcare assistants, caregivers and home health aides, work across several long‐term care settings, such as residential homes, continuing‐care hospitals and also private homes. Their roles include assisting with personal care and household management. New Zealand, similar to other countries, is facing a health workforce shortage. A three‐phased design was used: phase I, a survey of all home‐based and residential care providers (N = 942, response rate = 45%); phase II, a targeted survey of training needs (n = 107, response = 100%); phase III, four focus groups and 14 interviews with 36 providers, exploring themes arising from phases I and II. Findings on 17 910 paid caregivers revealed a workforce predominantly female (94%), aged between 40 and 50, with 6% over the age of 60. Mean hourly pay NZ$10.90 (minimum wage NZ$10.00 approx. UK3.00 at time of study) and 24 hours per week. The national paid caregiver turnover was 29% residential care and 39% community. Most providers recognised the importance of training, but felt their paid caregivers were not adequately trained. Training was poorly attended; reasons cited were funding, family, secondary employment, staff turnover, low pay and few incentives. The paid caregiver profile described reflects trends also observed in other countries. There is a clear policy direction in New Zealand and other countries to support people with a disability at home, and yet the workforce which is facilitating this vision is itself highly vulnerable. Paid caregivers have minimum pay, are female, work part‐time and although it is recognised that training is important for them, they do not attend, so consequently remain untrained.     

Self‐reported health,healthcare service use and health‐related needs: A comparison of older and younger homeless people

The number of older homeless people with a limited life expectancy is increasing. European studies on their health‐related characteristics are lacking. This study compared self‐reported health, healthcare service use and health‐related needs of older and younger homeless people in the Netherlands. It is part of a cohort study that followed 513 homeless people in the four major Dutch cities for a period of 2.5 years, starting from the moment they registered at the social relief system in 2011. Using cross‐sectional data from 378 participants who completed 2.5‐year follow‐up, we analysed differences in self‐reported health, healthcare service use, and health‐related needs between homeless adults aged ≥50 years (N = 97) and <50 years (N = 281) by means of logistic regression. Results show that statistically significantly more older than younger homeless people reported cardiovascular diseases (23.7% versus 10.3%), visual problems (26.8% versus 14.6%), limited social support from family (33.0% versus 19.6%) and friends or acquaintances (27.8% versus 14.6%), and medical hospital care use in the past year (50.5% versus 34.5%). Older homeless people statistically significantly less often reported cannabis (12.4% versus 45.2%) and excessive alcohol (16.5% versus 27.0%) use in the past month and dental (20.6% versus 46.6%) and mental (16.5% versus 25.6%) healthcare use in the past year. In both age groups, few people reported unmet health‐related needs. In conclusion, compared to younger homeless adults, older homeless adults report fewer substance use problems, but a similar number of dental and mental problems, and more physical and social problems. The multiple health problems experienced by both age groups are not always expressed as needs or addressed by healthcare services. Older homeless people seem to use more medical hospital care and less non‐acute, preventive healthcare than younger homeless people. This vulnerable group might benefit from shelter‐based or community outreach programmes that proactively provide multidisciplinary healthcare services.     

Out-of-hours care. Co-operative society

The last decade has seen a burgeoning of out-of-hours services in a movement characterized by experimentation and innovation that may have implications for all health services. The system needs to be more integrated to remove duplication and fill existing gaps in the service. But resistance from healthcare professionals is a major barrier. A shift from an out-of-hours emergency service towards 24-hour access for routine healthcare would be unsustainable and have limited health gain. NHS Direct should be the single point of access, with open access to A&E services restricted to people unable to telephone and who require urgent specialist care.