Patient and Caregiver Perspectives on Care-Seeking During a Vaso-Occlusive Crisis in Sickle Cell Disease: Results from Qualitative Interviews in Canada (original) (raw)

Not being heard: barriers to high quality unplanned hospital care during young people’s transition to adult services – evidence from ‘this sickle cell life’ research

BMC Health Services Research, 2019

Background: Young people’s experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition. Methods: We conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016–2017 with young people with SCD aged 13–21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2–3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis. Results: Participants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care. Conclusions: Our study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people’s voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.

Experiences of hospital care and treatment-seeking behavior for pain from sickle cell disease: Qualitative study

Western Journal of Medicine

#ENTITYSTARTX02022; To investigate how sociocultural factors influence the management of pain from sickle cell disease by comparing the experiences of those who usually manage their pain at home with the experiences of those who are more frequently admitted to hospital for management of their pain. #ENTITYSTARTX02022; Qualitative analysis of semistructured individual interviews and focus group discussions. #ENTITYSTARTX02022; 57 participants with genotype SS or S/beta-thal (44 participants) or SC (9 participants); the status of 4 participants was unknown. 40 participants took part in focus groups, 6 took part in both focus groups and interviews, and 9 were interviewed only. Participants were allocated to focus groups according to ethnic origin, sex, and the number of times that they had been admitted to the hospital for the management of painful crises during the previous year. #ENTITYSTARTX02022; The relation between patients with sickle cell disease and hospital services is one of...

Putting the Patient First: A Scoping Review of Patient Desires in Canada

Healthcare Policy, Vol. 16, no. 4, 2021

Patient-centred care is a key priority for governments, providers and stakeholders, yet little is known about the care preferences of patient groups. We completed a scoping review that yielded 193 articles for analysis. Five health states were used to account for the diversity of possible preferences based on health needs. Five broad themes were identified and expressed differently across the health states, including personalized care, navigation, choice, holistic care and care continuity. Patients' perspectives must be considered to meet the diverse needs of targeted patient groups, which can inform health system planning, quality improvement initiatives and targeting of investments. Résumé Les soins axés sur le patient sont une priorité clé pour les gouvernements, les fournisseurs et les intervenants, mais on en sait peu sur les préférences de soins des groupes de patients. Nous avons effectué un examen de la portée dans lequel 193 articles ont été analysés. Cinq états de santé ont été utilisés pour rendre compte de la diversité des préférences possibles en fonction des besoins en santé. Cinq grands thèmes ont été identifiés et exprimés différemment selon l'état de santé : les soins personnalisés, la navigation, le choix, les soins holistiques et la continuité des soins. Le point de vue du patient doit être pris en compte afin de répondre aux divers besoins des groupes ciblés, ce qui peut éclairer la planification du système de santé de même que les initiatives visant l' amélioration des soins ainsi que le ciblage des investissements.

Care Seeking for Pain in Young Adults with Sickle Cell Disease

Pain Management Nursing, 2014

In individuals with sickle cell disease (SCD), recognizing the cues to an acute pain episode and responding appropriately are important. The purpose of this mixed-methods pilot study is to identify preliminary factors that influence care seeking for pain in young adults with SCD. Responses were received from 69 young adults with SCD, age 18-35 years. The majority of respondents (88%) wait until the pain intensity is an average of 8.7 (± 1.2) on a scale of 1 to 10 before seeking care. Prominent themes influencing care seeking for pain include: trying to treat pain at home, avoiding the emergency department because of past treatment experiences, the desire to avoid admission to the hospital, and the importance of time in the lives of the young adults with SCD. Young adults with SCD need additional support from family and healthcare providers in order to make timely, appropriate decisions regarding care seeking.

This Health Care Problem Needs a Collaborative Closing of the Gap

Annals of Emergency Medicine, 2021

Funding and support: By Annals policy, all authors are required to disclose any and all commercial, financial, and other relationships in any way related to the subject of this article as per ICMJE conflict of interest guidelines (see www.icmje.org). The authors have stated that no such relationships exist.

Improving Emergency Providers’ Attitudes Toward Sickle Cell Patients in Pain

Journal of Pain and Symptom Management, 2016

Background-Provider biases and negative attitudes are recognized barriers to optimal pain management in sickle cell disease, particularly in the emergency department (ED). Measures-This prospective cohort measures pre-and post-intervention provider attitudes towards patients with sickle pain crises using a validated survey instrument. Intervention-ED providers viewed an eight-minute online video that illustrated challenges in sickle cell pain management, perspectives of patients and providers as well as misconceptions and stereotypes of which to be wary. Outcomes-Ninety-six ED providers were enrolled. Negative attitude scoring decreased, with a mean difference-11.5 from baseline, and positive attitudes improved, with a mean difference +10. Endorsement of red-flag behaviors similarly decreased (mean difference-12.8). Results were statistically significant and sustained on repeat testing three months post-intervention. Conclusions/Lessons Learned-Brief video-based educational interventions can improve emergency provider attitudes towards patients with sickle pain crises, potentially curtailing pain crises early, improving health outcomes and patient satisfaction scores.