Rethinking complex needs with patient and carer perspectives
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ABSTRACT:
SUBMITTER: Coughlan C
PROVIDER: S-EPMC7492068 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivesYoung people who have been removed from their family home and placed in care have often experienced maltreatment and there is well-developed evidence of poor psychological outcomes. Once in care, foster carers often become the adult who provides day-to-day support, yet we know little about how they provide this support or the challenges to and facilitators of promoting better quality carer-child relationships. The aim of this study was to understand how carers support the emotional needs of the young people in their care and their views on barriers and opportunities for support.Design and participantsParticipants were 21 UK foster carers, recruited from a local authority in England. They were predominantly female (86%), aged 42-65 years old and ranged from those who were relatively new to the profession (<12 months' experience) to those with over 30 years of experience as a carer. We ran three qualitative focus groups to gather in-depth information about their views on supporting their foster children's emotional well-being. Participants also completed short questionnaires about their training experiences and sense of competence.ResultsOnly half of the sample strongly endorsed feeling competent in managing the emotional needs of their foster children. While all had completed extensive training, especially on attachment, diagnosis-specific training for mental health problems (eg, trauma-related distress, depression) was less common. Thematic analysis showed consistent themes around the significant barriers carers faced navigating social care and mental health systems, and mixed views around the best way to support young people, particularly those with complex mental health needs and in relation to reminders of their early experiences.ConclusionsFindings have important implications for practice and policy around carer training and support, as well as for how services support the mental health needs of young people in care.
| S-EPMC7066644 | biostudies-literature
Project description:ObjectivesResearch suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals.MethodsInterviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF).ResultsAll three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite).DiscussionTo promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.
| S-EPMC9999280 | biostudies-literature
Project description:Background: Non-alcoholic steatohepatitis (NASH) is a chronic liver disease with severe complications and without approved therapies. Currently, there is limited data on the overall burden of the disease for patients or on patient needs and preferences. This study investigates patient preferences in relation to potential future therapies for NASH. In addition, the factors that are relevant to patients and their importance in relation to future treatment options are explored. Method: Telephone in-depth interviews (TDIs) preceded an online 30-min quantitative survey. The online survey included (1) multiple choice questions (MCQs) on NASH diagnosis and disease background. (2) An exercise to determine patients' satisfaction levels with information provided at diagnosis, and to explore symptomatology in detail. (3) Exercises to evaluate potential new products and product attributes, including a "drag and drop" ranking exercise, and an adaptive choice-based conjoint exercise (ACBC). (4) The EQ-5D-5L questionnaire and the Visual Analog Scale (VAS), which measures patients' health status. (5) Collection of socio-demographic data, and (6) Questions to measure patient satisfaction with the survey. Results: There were 166 patients included in this study from Canada [n = 36], Germany [n = 50], the UK [n = 30], and USA [n = 50]. Fifty seven percent of patients [n = 94] had had a liver biopsy for confirmation of NASH. Patients were often unable to link their symptoms to NASH or other conditions. ACBC results showed that efficacy, defined as "impact on liver status" was the single most important attribute of a potential future NASH therapy. Other attributes considered to have secondary importance included impact on weight, symptom control and the presence of side effects. The EQ-5D utility score was 0.81 and VAS = 67.2. Conclusion: "Impact on liver status" is the primary outcome sought. Patients demonstrate a general lack of understanding of their disease and appeared to be unfamiliar with longer-term consequences of NASH. It is necessary to improve patient understanding of NASH and its progressive nature, and there is a need for improving confirmatory diagnosis and monitoring.
| S-EPMC6457207 | biostudies-literature
Project description:ObjectivesTo understand the reasons behind, and experience of, seeking and receiving emergency ambulance treatment for a 'primary care sensitive' condition.DesignA comprehensive, qualitative systematic review. Medline, Embase, PsychInfo, Cumulative Index of Nursing and Allied Health, Health Management Information Systems, Healthcare Management Information Consortium, OpenSigle, EThOS and Digital Archive of Research Theses databases were systematically searched for studies exploring patient, carer or healthcare professional interactions with ambulance services for 'primary care sensitive' problems. Studies using wholly qualitative approaches or mixed-methods studies with substantial use of qualitative techniques in both the methods and analysis sections were included. An analytical thematic synthesis was undertaken, using a line-by-line qualitative coding method and a hierarchical inductive approach.ResultsOf 1458 initial results, 33 studies met the first level (relevance) inclusion criteria, and six studies met the second level (methodology and quality) criteria. The analysis suggests that patients define situations worthy of 'emergency' ambulance use according to complex socioemotional factors, as well as experienced physical symptoms. There can be a mismatch between how patients and professionals define 'emergency' situations. Deciding to call an ambulance is a process shaped by practical considerations and a strong emotional component, which can be influenced by the views of caregivers. Sometimes the value of a contact with the ambulance service is principally in managing this emotional component. Patients often wish to hand over responsibility for decisions when experiencing a perceived emergency. Feeling empowered to take control of a situation is a highly valued aspect of ambulance care.ConclusionsWhen responding to a request for 'emergency' help for a low-acuity condition, urgent-care services need to be sensitive to how the patient's emotional and practical perception of the situation may have shaped their decision-making and the influence that carers may have had on the process. There may be novel ways to deliver some of the valued aspects of urgent care, more geared to the resource-limited environment.
| S-EPMC5623409 | biostudies-literature
Project description: Not available
| S-EPMC1557932 | biostudies-literature
Project description:Stroke is a life-changing experience. Current treatments focus on treating the condition, rather than the whole person. The goal of this report was to communicate the benefits of a holistic approach to the treatment and recovery of stroke. Our intent was to begin a conversation to transform our approach to stroke care to focus on the whole person, body, mind, and spirit. Wellness approaches are fiscally responsible ways of providing holistic care for patients and their family members to help them achieve optimal individualized recovery. Very few multidimensional programs for wellness exist for patients with stroke and brain injury. Given the changes in health care and the Call to Action set forth in the Institute of Medicine's 2010 report, it would behoove us to consider holistic approaches to stroke care and research programs. Nurses are uniquely positioned to implement multidisciplinary, innovative holistic approaches to address solutions for issues in stroke care. Wellness is a critically important area of stroke care and an opportunity for research. As advocates for patients, and nurses with personal experiences, we hope this commentary stimulates conversation around developing and testing multidimensional holistic programs of wellness for stroke prevention, treatment, and recovery.
| S-EPMC5142760 | biostudies-literature
Project description:Objective:The provision of rehabilitation services after childhood brain tumour has not been established, despite a recent parliamentary call for urgent action. This service evaluation aimed to determine what specialist paediatric neuro-oncology rehabilitation services were available across the UK at the time of the surveys and whether the needs of patients and their families were being met. Design:Cross-sectional on-line surveys. Participants:Survey 1: neuro-oncologist and nurse specialist members of the Children's Cancer and Leukaemia Group (CCLG) at Children's Principle Treatment Centres (PTCs) in the UK; Survey 2: parents of paediatric neuro-oncology patients belonging to The Brain Tumour Charity (TBTC) Research Involvement Network (RIN). Results:17 of the 20 (85%) PTCs in the UK and two teenagers and young adult cancer units responded to Survey 1, and 17 members of TBTC's RIN responded to Survey 2. Access to inpatient and outpatient neuro-oncology rehabilitation services after treatment for a central nervous system (CNS) tumour varied across regions in the UK. Service users in the RIN identified a need for an established neuro-oncology rehabilitation service for young people, a need for better communication across services and with families, and a need to fill gaps in multidisciplinary teams. Conclusion:The urgent need for specialist paediatric, teenage and young adult neuro-oncology rehabilitation services in the UK is often unmet, particularly for outpatients. Where services are not provided for those children and young people disadvantaged by the diagnosis of a CNS tumour, in clear breach of current guidelines, remedial action needs to be taken to ensure appropriate and equal access.
| S-EPMC6937011 | biostudies-literature
Project description:Carer distress is one important negative impact of caregiving and likely exacerbated by the novel coronavirus disease 2019 (COVID-19) pandemic, yet little population-based epidemiological information exists. Using national data from repeated standardized comprehensive geriatric needs assessments, this study aims to: describe the pattern of caregiver distress among those providing informal care to community-living adults aged ≥ 65 years with complex needs in New Zealand over time; estimate the COVID-19 effect on this temporal pattern; and, investigate relationships between participants' sociodemographic and selected health measures on caregiver distress. Fractional polynomial regression and multivariable multilevel mixed-effects models were employed. Overall, 231,277 assessments from 144,358 participants were analysed. At first assessment, average age was 82.0 years (range 65-107 years), and 85,676 (59.4%) were female. Carer distress prevalence increased from 35.1% on 5 July 2012 to a peak of 48.5% on 21 March 2020, when the New Zealand Government announced a national lock-down. However, the population attributional fraction associated with the COVID-19 period was small, estimated at 0.56% (95% CI 0.35%, 0.77%). Carer distress is common and has rapidly increased in recent years. While significant, the COVID-19 impact has been relatively small. Policies and services providing efficacious on-going strategies to support caregivers deserves specific attention.
| S-EPMC9668208 | biostudies-literature
Project description: Not available
| S-EPMC6835084 | biostudies-literature
Project description:In recent years, human flourishing and its relationship to mental health have attracted significant attention in a wide range of fields. As an interdisciplinary, mixed-methods team with strong roots in critical medical anthropology and critical public health, we are intrigued by the possibility that a focus on flourishing may reinvigorate health research, policy, and clinical care in transformative ways. Yet current proposals to this effect, we contend, must be met with caution. In particular, we call attention to the troubling disconnect between current research on flourishing, on one hand, and the voluminous body of scholarship demonstrating the detrimental impact of structural inequities on health, on the other. We illuminate this blind spot in two ways. We begin with a critical assessment of leading conceptions to flourishing in positive psychology, which are compared to current approaches in the critical social sciences of health. In the second half of the paper, we support our argument by presenting original findings from a mixed-methods study with a diverse sample of interviewees in the Midwestern U.S. city of Cleveland, Ohio (n=167). Our interviewees' rich narrative accounts, which we analyze both quantitatively and qualitatively, highlight important ways in which everyday understandings of flourishing diverge from prevailing scholarly accounts. Given these gaps and blind spots, now is an opportune time for robust interdisciplinary discussion about the implicit values and presumptions underpinning leading approaches to flourishing and their wide-ranging implications for research, policy, and clinical care in mental health fields and beyond.
| S-EPMC8694651 | biostudies-literature