Perspectives on Emotional Care: A Qualitative Study with Cancer Patients, Carers, and Health Professionals.
Ontology highlight
ABSTRACT:
SUBMITTER: Krishnasamy M
PROVIDER: S-EPMC9956222 | biostudies-literature | 2023 Feb
REPOSITORIES: biostudies-literature
Publications
Perspectives on Emotional Care: A Qualitative Study with Cancer Patients, Carers, and Health Professionals.
Krishnasamy Meinir M Hassan Heidi H Jewell Carol C Moravski Irene I Lewin Tennille T
Healthcare (Basel, Switzerland) 20230204 4
The emotional consequences of a cancer diagnosis are well documented and range from emotional distress, defined as suffering associated with feelings such as shock, fear, and uncertainty, through to psychological distress that may manifest as depression, anxiety, feelings of hopelessness, or heightened risk of suicide. This study set out to explore the assumption that the provision of emotional care should be the platform upon which all other aspects of cancer care are delivered and, that withou ...[more]
Similar Datasets
Project description:BackgroundNew out-of-hours healthcare services in the UK are intended to offer simple, convenient access and effective triage. They may be unsatisfactory for patients with complex needs, where continuity of care is important.AimTo explore the experiences and perceptions of out-of-hours care of patients with advanced cancer, and with their informal and professional carers.Design of studyQualitative, community-based study using in-depth interviews, focus groups and telephone interviews.SettingUrban, semi-urban and rural communities in three areas of Scotland.MethodInterviews with 36 patients with advanced cancer who had recently used out-of-hours services, and/or their carers, with eight focus groups with patients and carers and 50 telephone interviews with the patient's GP and other key professionals.ResultsPatients and carers had difficulty deciding whether to call out-of-hours services, due to anxiety about the legitimacy of need, reluctance to bother the doctor, and perceptions of triage as blocking access to care and out-of-hours care as impersonal. Positive experiences related to effective planning, particularly transfer of information, and empathic responses from staff. Professionals expressed concern about delivering good palliative care within the constraints of a generic acute service, and problems accessing other health and social care services.ConclusionsService configuration and access to care is based predominantly on acute illness situations and biomedical criteria. These do not take account of the complex needs associated with palliative and end-of-life care. Specific arrangements are needed to ensure that appropriately resourced and integrated out-of-hours care is made accessible to such patient groups.
| S-EPMC1821404 | biostudies-literature
Project description:BackgroundCardiac implantable electronic devices (CIEDs) has proven to be an invaluable tool in the practice of cardiology. Patients who have undergone CIED surgery with local anesthesia may result in fear, insecurity and suffering. Some studies have put efforts on ways to improve intraoperative experience of patients with local anesthesia, but researches concerning experiences of CIED patients during surgery is in its infancy.MethodsBased on semi-structured and in-depth interviews, a qualitative design was conducted in a tertiary general hospital in China from May 2022 to July 2023.Purposeful sampling of 17 patients received CIED surgery and 20 medical staff were interviewed. Thematic analysis with an inductive approach was used to identify dominant themes.ResultsFour themes emerged from the data: (1) Safety and success is priority; (2) Humanistic Caring is a must yet be lacking; (3) Paradox of surgery information given; (4) Ways to improve surgery experiences in the operation.ConclusionsIntraoperative care is significant for CIED surgery. To improve care experience during surgery, healthcare professionals should pay attention to patients' safety and the factors that affecting humanistic caring in clinical practice. In addition, information support should consider information-seeking styles and personal needs. Besides, the four approaches presented in this study are effective to improve the intraoperative care experience.
| S-EPMC10789075 | biostudies-literature
Project description:BackgroundAlthough the electronic health record system adoption rate has reached 96% in the United States, implementation and usage of health information exchange (HIE) is still lagging behind. Blockchain has come into the spotlight as a technology to solve this problem. However, there have been no studies assessing the perspectives of different stakeholders regarding blockchain-based patient-centered HIE.ObjectiveThe objective of this study was to analyze the awareness among patients, health care professionals, and information technology developers toward blockchain-based HIE, and compare their different perspectives related to the platform using a qualitative research methodology.MethodsIn this qualitative study, we applied grounded theory and the Promoting Action on Research Implementation in the Health Service (PARiHS) framework. We interviewed 7 patients, 7 physicians, and 7 developers, for a total of 21 interviewees.ResultsRegarding the leakage of health information, the patient group did not have concerns in contrast to the physician and developer groups. Physicians were particularly concerned about the fact that errors in the data cannot be easily fixed due to the nature of blockchain technology. Patients were not against the idea of providing information for clinical trials or research institutions. They wished to be provided with the results of clinical research rather than being compensated for providing data. The developers emphasized that blockchain must be technically mature before it can be applied to the health care scene, and standards of medical information to be exchanged must first be established.ConclusionsThe three groups' perceptions of blockchain were generally positive about the idea of patients having the control of sharing their own health information. However, they were skeptical about the cooperation among various institutions and implementation for data standardization in the establishment process, in addition to how the service will be employed in practice. Taking these factors into consideration during planning, development, and operation of a platform will contribute to establishing practical treatment plans and tracking in a more convenient manner for both patients and physicians. Furthermore, it will help expand the related research and health management industry based on blockchain.
| S-EPMC7695529 | biostudies-literature
Project description:BackgroundPeople with prediabetes are at high risk of developing type 2 diabetes and its complications, such as cardiovascular diseases and premature mortality. Primary prevention and health maintenance are therefore imperative. Evidence has shown that prediabetes can be prevented or delayed with behavioural change, mainly in eating habits and physical activity. Interventions that use a person-centered approach can lead to improvements in self-management, quality of life, and health outcomes. Nevertheless, there is a need for further research that engages healthcare professionals and people with prediabetes in constructing and implementing preventive programs. The purpose of this study is to explore and describe how healthcare professionals perceive prediabetes, the current challenges in its detection and treatment, and what is needed to improve quality of care.MethodsThis qualitative study was conducted in Region Stockholm. A total of 26 primary health care professionals participated in individual interviews: 15 diabetes nurses and/or district nurses, five general practitioners, five dietitians, and one physiotherapist. Interview transcripts were analyzed with qualitative content analysis.ResultsThe analysis revealed two main themes that emphasize the need to make prediabetes more visible in primary health care. Despite the healthcare professionals' engagement and their motivation to improve prediabetes care, ad hoc practices and the absence of clear screening guidelines and referral pathways made it harder to focus on primary prevention. Supporting professionals in implementing structured care for people with prediabetes might encourage more efficient interprofessional collaboration and contribute to better strategies for promoting behavioural change.ConclusionsEstablishing prediabetes care guidelines, supporting health care professionals´ knowledge and skills in prediabetes care, and implementing interprofessional referral pathways are some steps to enhance prediabetes detection and care precedence in primary health care. These steps could lead to more preventive care and ensure patient safety and health care equity.
| S-EPMC10717089 | biostudies-literature
Project description:ObjectiveCancer patients, carers and oncology health professionals have been impacted by the COVID-19 pandemic in many ways, but their experiences and psychosocial responses to the pandemic are still being explored. This study aimed to document the experience of Australians living with cancer, family carers, and Oncology health professionals (HPs) when COVID-19 first emerged.MethodsIn this qualitative study, participants (cancer patients currently receiving treatment, family carers and HPs) completed a semi-structured interview exploring their experiences of COVID-19 and the impact it had on cancer care. Participants also completed the Hospital Anxiety and Depression Scale (patients) and the Depression, Anxiety and Stress Scale (carers and HPs) to assess emotional morbidity. Thematic analysis was undertaken on qualitative data.Results32 patients, 16 carers and 29 HPs participated. Qualitative analysis yielded three shared themes: fear and death anxiety, isolation, and uncertainty. For HPs, uncertainty incorporated the potential for moral distress and work-stress. Patients and carers scoring high on anxiety/depression measures were more likely to have advanced disease, expressed greater death anxiety, talked about taking more extreme precautionary measures, and felt more impacted by isolation.ConclusionCancer and COVID-19 can have compounding psychological impacts on all those receiving or giving care.Practice implicationsScreening for distress in patients, and burnout in HPs, is recommended. Increased compassionate access and provision of creative alternatives to face-to-face support are warrented.
| S-EPMC8801619 | biostudies-literature
Project description:BackgroundThe spiritual aspect of care is an often neglected resource in pain therapies. The aim of this study is to identify commonalities and differences in chronic pain patients' (CPP) and health care professionals' (HCP) perceptions on the integration of spiritual care into multimodal pain therapy.MethodsWe conducted a qualitative exploratory study with 42 CPPs and 34 HCPs who were interviewed in 12 separate groups in five study centres specialising in chronic pain within German-speaking Switzerland. The interviews were transcribed and subjected to a qualitative content analysis. Findings were generated by juxtaposing and analysing the statements of (a) HCP about HCP, (b) HCP about CPP, (c) CPP about HCP, and (d) CPP about CPP.ResultsViews on spiritual concerns and needs in chronic pain care can be described in three distinct dimensions: function (evaluating the need / request to discuss spiritual issues), structure (evaluating when / how to discuss spiritual issues) and context (evaluating why / under which circumstances to discuss spiritual issues). CPPs stress the importance of HCPs recognizing their overall human integrity, including the spiritual dimension, and would like to grant spiritual concerns greater significance in their therapy. HCPs express difficulties in addressing and discussing spiritual concerns and needs with chronic pain patients. Both parties want clarification of the context in which the spiritual dimension could be integrated into treatment. They see a need for greater awareness and training of HCPs in how the spiritual dimension in therapeutic interactions might be addressed.ConclusionsAlthough there are similarities in the perspectives of HCPs and CPPs regarding spiritual concerns and needs in chronic pain care, there are relevant differences between the two groups. This might contribute to the neglect of the spiritual dimension in the treatment of chronic pain.Trial registrationThis study was part of a larger research project, registered in a primary (clinicaltrial.gov: NCT03679871 ) and local (kofam.ch: SNCTP000003086 ) clinical trial registry.
| S-EPMC8152324 | biostudies-literature
Project description:BackgroundArtificial intelligence (AI) is transforming the mental health care environment. AI tools are increasingly accessed by clients and service users. Mental health professionals must be prepared not only to use AI but also to have conversations about it when delivering care. Despite the potential for AI to enable more efficient and reliable and higher-quality care delivery, there is a persistent gap among mental health professionals in the adoption of AI.ObjectiveA needs assessment was conducted among mental health professionals to (1) understand the learning needs of the workforce and their attitudes toward AI and (2) inform the development of AI education curricula and knowledge translation products.MethodsA qualitative descriptive approach was taken to explore the needs of mental health professionals regarding their adoption of AI through semistructured interviews. To reach maximum variation sampling, mental health professionals (eg, psychiatrists, mental health nurses, educators, scientists, and social workers) in various settings across Ontario (eg, urban and rural, public and private sector, and clinical and research) were recruited.ResultsA total of 20 individuals were recruited. Participants included practitioners (9/20, 45% social workers and 1/20, 5% mental health nurses), educator scientists (5/20, 25% with dual roles as professors/lecturers and researchers), and practitioner scientists (3/20, 15% with dual roles as researchers and psychiatrists and 2/20, 10% with dual roles as researchers and mental health nurses). Four major themes emerged: (1) fostering practice change and building self-efficacy to integrate AI into patient care; (2) promoting system-level change to accelerate the adoption of AI in mental health; (3) addressing the importance of organizational readiness as a catalyst for AI adoption; and (4) ensuring that mental health professionals have the education, knowledge, and skills to harness AI in optimizing patient care.ConclusionsAI technologies are starting to emerge in mental health care. Although many digital tools, web-based services, and mobile apps are designed using AI algorithms, mental health professionals have generally been slower in the adoption of AI. As indicated by this study's findings, the implications are 3-fold. At the individual level, digital professionals must see the value in digitally compassionate tools that retain a humanistic approach to care. For mental health professionals, resistance toward AI adoption must be acknowledged through educational initiatives to raise awareness about the relevance, practicality, and benefits of AI. At the organizational level, digital professionals and leaders must collaborate on governance and funding structures to promote employee buy-in. At the societal level, digital and mental health professionals should collaborate in the creation of formal AI training programs specific to mental health to address knowledge gaps. This study promotes the design of relevant and sustainable education programs to support the adoption of AI within the mental health care sphere.
| S-EPMC10739240 | biostudies-literature
Project description:BackgroundAn early psychotherapeutic treatment of anorexia nervosa (AN) is crucial for a good prognosis. In order to improve treatment initiation, knowledge about facilitators and barriers to treatment is needed.ObjectiveAgainst this background, we aimed to identify facilitators and barriers from the perspectives of patients, carers and professionals using a qualitative approach.MethodTo this end, semi-structured interviews were conducted in triads of female patients with AN aged 14 years and older at the beginning of their first psychotherapeutic treatment, their carers, and referring health care professionals. A modified Grounded Theory approach was used for analysis.ResultsIn total, 22 interviews were conducted (n = 6 adults, n = 4 adolescents, 4 full triads). The duration of untreated AN ranged between 30 days and 25.85 years (M = 3.06 ± 8.01 years). A wide spectrum of facilitators and barriers within the patient, the social environment, the health care system and the society were identified. Most prominent factors were 'recognizing and addressing' by close others, 'waiting times and availability' and 'recommendations and referrals' by health care professionals. 'Positive role models for treatment' were perceived as a specific facilitative social influence. Facilitators were more frequently mentioned than barriers and most of the factors seem to hold potential for modifiability.ConclusionOverall, the findings suggest that early intervention approaches for AN should not only address patients and the health care system, but may also involve carers and successfully treated former patients.Trial registrationClinicalTrials.gov Identifier: NCT03713541 .
| S-EPMC7913310 | biostudies-literature
Project description:PurposeGlobally, lung cancer is the most common cancer and the leading cause of cancer death. Problematically, there is a wide variation in the management and survival for people with lung cancer and there is limited understanding of the reasons for these variations. To date, the views of health professionals across relevant disciplines who deliver such care are largely absent. The present study describes Australian health professionals' views about barriers to lung cancer care to help build a research and action agenda for improving lung cancer outcomes.MethodsQualitative semi-structured interviews were undertaken with a multidisciplinary group of 31 Australian health professionals working in lung cancer care for an average of 16 years (range 1-35 yrs.; SD = 10.2) seeing a mean of 116 patients annually.ResultsThree superordinate themes were identified: illness representations, cultural influences, and health system context. Illness representations included three themes: symptoms attributed as smoking-related but not cancer, health-related stigma, and therapeutic nihilism. Cultural influence themes included Indigenous health care preferences, language and communication, and sociodemographic factors. Health system context included lack of regional services and distance to treatment, poor care coordination, lack of effective screening methods, and health professional behaviours.ConclusionsFractured and locally isolated approaches routinely confound responses to the social, cultural and health system complexities that surround a diagnosis of lung cancer and subsequent treatment. Improving outcomes for this disadvantaged patient group will require government, health agencies, and the community to take an aggressive, integrated approach balancing health policy, treatment priorities, and societal values.
| S-EPMC5196009 | biostudies-literature
Project description:Health systems often lack integrated, person-centered end-of-life care. Improving this care is a key priority for decision-makers in the Catalan context. This study aimed to understand how key stakeholders in the healthcare sector-patients, family members, and healthcare professionals-define the concept of a 'good death' and identify their key common elements in Catalonia, Spain. The research team conducted twenty-three semi-structured, in-depth qualitative interviews with patients receiving palliative care or suffering from complex or advanced chronic conditions, older adults over 65 with chronic illnesses, and their relatives. Three-focus discussion groups were also conducted which involved 31 professionals representing care, management, and planning at a local/regional level as well as representatives from patient and family associations involved in end-of-life care. All discussions and interviews followed a predefined guideline, and we recorded and transcribed them for later thematic content and discourse analysis. Overall, participants did not reach a single, universal definition of a 'good death.' Instead, it appears that a 'good death' involves dying in the way each person desires. In our effort to identify common elements, we found that participants consistently mentioned eight: comfort, placidity, safety, warmth, harmony, intimacy, respect, peacefulness and fulfilment. The study provides valuable insights for service planning and enhances the understanding of the needs of individuals at the end of life, including those with chronic conditions and their relatives, as well as the professionals who care for them and manage services or policies at the local and regional levels in Catalonia. The study highlights participants' preferences for their end-of-life care and their views on death, contributing to a broader understanding of what defines a 'good death.'
| S-EPMC11602040 | biostudies-literature