Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?
Female; Male; Adult; Aged; Perception; Demography; Human; Sleep; Interview; Evaluation; Chronic Pain/dt [Drug Therapy]; Outcomes Research; Article; Clinical Article; Clinical Study; Controlled Study; Disease Severity; Dose Response; Empiricism; Health Center; Medical Decision Making; Medical Information; Medical Research; Methodology; Opiate/do [Drug Dose]; Opiate/dt [Drug Therapy]; Pain Assessment; Pain Clinic; qualitative analysis; Rating Scale; Urban Area
Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients & Setting. Interviews were completed with 40 patients seen at the anesthesia pain clinic of an urban tertiary care medical center. Design. Each patient was presented with 4 brief (3-4 sentences) fixed information vignettes describing studies in which new medications would be evaluated. For each, patients were asked to describe how the medication being studied might offer an improvement over their current therapy. Outcome measures. Measures included structured qualitative analysis of responses, the Brief Pain Inventory, and Global Distress Index of the Memorial Symptom Assessment Scale. Results. Patients described a total of 20 endpoints. Individually, patients cited between 2 and 9 end-points each (mean 4.9, standard deviation 1.7). Of these, the most commonly cited were decrease pain, decrease opioid dose, decrease frequency of scheduled dose, increased ability to function, decrease frequency of breakthrough dose, and improve sleep. Patients with severe pain cited more endpoints than did those with mild or moderate pain (mean 5.5 vs. 4.3; Rank sum test p = 0.01). Conclusions. These data suggest that empirical research can provide data to guide the choice of endpoints in clinical studies of pain interventions.
2001
Casarett D; Karlawish J; Sankar P; Hirschman K; Asch DA
Pain Medicine
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1046/j.1526-4637.2001.01041.x" target="_blank" rel="noreferrer">10.1046/j.1526-4637.2001.01041.x</a>
The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review
Child; child; female; human; male; palliative therapy; Medline; pediatrics; systematic review; review; attention; Cinahl; Only Child; child parent relation; Embase; PsycINFO; religion; data source; empiricism
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. Aim: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.
Engel M; Brouwer MA; Jansen N; Leget C; Teunissen SCCM; Kars MC
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163231186173" target="_blank" rel="noreferrer noopener">10.1177/02692163231186173</a>
Parental agency in pediatric palliative care
Palliative Care; child; terminal care; article; female; human; male; caregiver; palliative therapy; pediatrics; human experiment; care behavior; decision making; social environment; relational autonomy; empiricism
Szabat M
Nursing Inquiry
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/nin.12594" target="_blank" rel="noreferrer noopener">10.1111/nin.12594</a>