Background: Despite numerous reports of significant distress and burden for hematopoietic stem cell transplantation (HSCT) patients and caregivers (CGs), HSCT-specific coping interventions remain rare. The few in use lack specificity and are often not easily accessible or cost-effective. Whereas the development of new interventions is resource-intensive, theory-informed adaptation of existing evidence-based interventions is promising. To date, no HSCT-specific intervention has relied on a formal adaptation approach.
Methods: Using the Center for Disease Control and Prevention's Map of Adaptation, this two-phase qualitative descriptive study seeks to understand the perceptions of HSCT patients, CGs, individually, and in dyads, and clinicians about Coping Together (CT) for the preliminary adaptation (Phase 1), and then explores perceptions of the modified intervention in additional mixed sample (Phase 2). Six to ten participants including outpatients, CGs and dyads and five to seven HSCT clinician participants will be recruited for Phase 1. For Phase 2, 14 to 16 participants including outpatients, CGs and dyads will be recruited. Individual and dyadic semi-structured interviews will take place between 100 and 130 days post-HSCT. Verbatim transcripts will be analyzed using content analysis.
Discussion: It is paramount to have HSCT-specific supportive interventions that address patients' and CGs' multidimensional and complex needs. The timely involvement of key stakeholders throughout the adaptation process is likely to optimize the relevance and uptake of such tailored intervention.
Trial Registration: This study is registered on October 6, 2016 in ClinicalTrials.gov at (identifier number NCT02928185 ).
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http://dx.doi.org/10.1186/s12913-018-3483-1 | DOI Listing |
Otolaryngol Head Neck Surg
January 2025
Department of Otolaryngology-Head and Neck Surgery, McGill University Health Center, Montreal, Quebec, Canada.
Objective: Information technologies may enhance our traditional perioperative teaching by providing more comprehensive information beyond the clinical visit. This quality improvement study aims to assess whether the implementation of an animated surgical video improves caregiver satisfaction for children undergoing adenotonsillectomy.
Study Design: Prospective, single-blinded randomized-controlled trial was conducted between March 1 and October 1, 2023.
Front Psychiatry
December 2024
Department of Psychiatry, University of Health Sciences, Erzurum Faculty of Medicine, Erzurum, Türkiye.
Introduction: The study aimed to evaluate, both comparatively and longitudinally, the effects of receiving services from community mental health centers on the stigma levels of patients and relatives and the burden of care for patients with severe mental illness.
Methods: The study was planned to be conducted on patients with severe mental illness [schizophrenia spectrum disorders (SSDs) and bipolar disorder (BD)] and their relatives, followed by the community mental health center (CMHC group) and the outpatient clinic (outpatient group). It was planned to provide psychoeducation to relatives once a month for 2 h; meetings with the case manager at least once every 2 weeks; and psychosocial interventions (social inclusion, daily life activities studies, etc.
Arch Esp Urol
December 2024
Nursing Department, Fujian Provincial Hospital, 350001 Fuzhou, Fujian, China.
Objective: Patients with urological tumours frequently experience compromised quality of life and mental health issues. This study aimed to evaluate the impact of a primary caregiver training programme conducted by a community health service centre on these patients.
Methods: This retrospective study assessed a primary caregiver training programme for patients with urological tumours conducted across ten community health centres in China over 6 weeks from March 2020 to March 2024.
Background: Self-directed interventions are cost-effective for patients with cancer and their family caregivers, but barriers to use can compromise adherence and efficacy.
Aim: Pilot a Sequential Multiple Assignment Randomized Trial (SMART) to develop a time-varying dyadic self-management intervention that follows a stepped-care approach in providing different types of guidance to optimize the delivery of Coping-Together, a dyadic self-directed self-management intervention.
Methods: 48 patients with cancer and their caregivers were randomized in Stage 1 to: (a) Coping-Together (included a workbook and 6 booklets) or (b) Coping-Together + lay telephone guidance.
Palliative care improves the quality of life for seriously ill patients, but misconceptions and knowledge gaps hinder its implementation in home healthcare (HHC). This study developed and pilot-tested HHC-specific questionnaires to measure palliative care knowledge, attitudes, and confidence (PC-KAC) among clinicians, patients, and caregivers. Using literature reviews, expert input, and cognitive interviews, the questionnaires were refined to ensure clarity, practical relevance, and content validity.
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