Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study

Forcrand, Claire de; Flannery, Mara; Cho, Jeanne; Pidatala, Neha Reddy; Batra, Radhika; Booker‐Vaughns, Juanita; Chan, Garrett K.; Dunn, Patrick; Galvin, Robert; Hopkins, Ernest; Isaacs, Eric; Kizzie‐Gillett, Constance L.; Maguire, Margaret; Navarro, M.; Rosini, Dawn; Vaughan, William P.; Welsh, Sally; Williams, Pluscedia; Young‐Brinn, Angela; Grudzen, Corita

doi:10.1097/mlr.0000000000001583

Cited by 6 publications

(6 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…All three measures have been developed through collaborative interdisciplinary efforts, have demonstrated reliability and validity, and, when used as a starting point for further investigation, can offer insights into the interplay between religion, spirituality, and medical-decision-making; yet only one, the FACIT-SP-12, involved patients in the initial stage of its development. This commitment to the principles of PCOR through which patients, who have a vested interest in a clinical decision and the evidence that supports that decision, participate in a measure's development (de Forcrand et al, 2021), likely contributed to the FACIT-Sp-12's strong psychometric properties, eventual translation into 39 different languages and widespread acceptance as a non-biased instrument capable of measuring meaning, peace, and faith in diverse religious and cultural contexts. While PCOR principles certainly offer a pathway to establishing content validity through the reflections and critical analysis of patients as participant stakeholders, there are no formal empirical tests for content validity and therefore no substitute for the contribution of subject matter experts.…”

Section: Discussionmentioning

confidence: 99%

Demystifying African American Spirituality: Exploring the Measurement of Spirituality in the Context of Medical Decision-Making

Dunlop

2024

Illness, Crisis & Loss

View full text Add to dashboard Cite

Many African Americans experiencing serious illness rely on their faith or spirituality to navigate the complex systemic inequities of the United States healthcare system. Yet, African American patient's faith affirmations, beliefs, and spirituality are seldom explored or understood by their clinicians. Despite the urgent need to improve palliative care utilization by this underserved and understudied patient demographic, limited research has been performed to operationally define and quantify how religious belief and/or spirituality affect medical decision-making in African American patients. While a literature search for a tool to measure the concept of African American religiosity or spirituality in medical decision-making produced no results, this review examines three valid and reliable instruments, the DUREL, the RBEC, and the FACIT-Sp-12, that palliative care clinicians and researchers may adapt or supplement with Patient Centered Outcome Research developed items to investigate the influence of faith, spirituality, and religious belief in medical decision-making within the African American patient population.

show abstract

Section: Discussionmentioning

confidence: 99%

Demystifying African American Spirituality: Exploring the Measurement of Spirituality in the Context of Medical Decision-Making

Dunlop

2024

Illness, Crisis & Loss

View full text Add to dashboard Cite

show abstract

“…Such a modification of the instrument, which takes the unique condition and situation of PAD into account, requires the involvement of stakeholders, such as patients and their caregivers, researchers, clinicians, instrument developers, advocacy groups, or others, across different stages of the instrument development process. Studies about stakeholder involvement and palliative care have shown that the engagement of stakeholders in research improves the research process and promotes more patient-centered results [ 59 ].…”

Section: Discussionmentioning

confidence: 99%

The German version of the Mini Suffering State Examination (MSSE) for people with advanced dementia living in nursing homes

et al. 2022

View full text Add to dashboard Cite

Background The Mini Suffering State Examination (MSSE) has been explicitly recommended to assess suffering in dementia patients. This study aimed to develop a German version of the MSSE and assess its psychometric properties involving people with advanced dementia (PAD) in a nursing home setting. Methods The MSSE was translated into German, and 95 primary nurses administered it cross-sectionally to 124 PAD in Zurich, Switzerland. The psychometric properties of the German MSSE version were calculated for this population. Results The mean age of the PAD was 83.3 years (SD = 9.1, range = 55–102 years), and 98 of them (79.0%) were women. The Kuder-Richardson Formula 20 coefficient for the entire scale (0.58), the eight items relating to objective health conditions (0.39), and the professional and family estimation of the patient’s suffering (0.64) indicated low internal consistency. A confirmatory factor analysis indicated an unsatisfactory fit to a one-factor structure, with a comparative fit index and root mean square error of approximation of 0.71 and 0.08, respectively, and a Tucker–Lewis index of 0.64. The MSSE total score was significantly but moderately correlated with the total scores of the Symptom Management–End-of-Life with Dementia (SM-EOLD) scale (Pearson’s correlation coefficient (r) = -0.44; p < 0.05), the physical suffering scores (r = 0.41; p < 0.05), and the psychological suffering scores (r = 0.55; p < 0.05). Conclusions The German version of the MSSE questionnaire did not perform well in the nursing home setting involving PAD. The instrument had low internal consistency, doubtful validity, and could not discriminate between suffering and other distressing symptoms. We do not recommend its use in this population.

show abstract

“…Also, the issues of methods and scientific tools needed for evaluating stakeholders' level of engagement have been extensively debated into. 6 The author presents below the proposed framework within which (a) specific stakeholder groups and settings can be identified, and (b) effective PC care services can be ensured.…”

Section: Significance Of Stakeholders' Involvementmentioning

confidence: 99%

Addressing insufficient access to palliative care: what stakeholders can do?

Mishra

2023

HPMIJ

View full text Add to dashboard Cite

Health care providers look at palliative care (PC) as an approach that “improves the quality of life of patients (both adult and children) and their families who are facing problems associated with life-threatening illness”. It has been, on the basis of findings of large-scale clinical trials, found that PC has the potential to prevent and relieve suffering through the early identification, correct assessment and treatment of pain and other problems (whether physical and/or psychosocial in nature). Author of this research essay argues that adequately addressing suffering (resulting from pain) involves taking care of issues that are beyond physical symptoms. However, it is pertinent to note that significant proportions of population in many regions of the globe (who are in need) do not have adequate to PC owing to several factors. It is against this backdrop that the author of this work primarily aims to present an insight into strategic interventions required for adequately addressing insufficient access to PC. In terms of methodology, secondary data (largely ‘quantitative’ in nature) have been used, and method of data analysis is descriptive (involving “desk-based research”). This work briefly includes that addressing practical needs form priority on health developmental initiatives, with specific focus on “offering a support system to help patients live as actively as possible until death”.

show abstract

Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study

Abstract: Supplemental Digital Content is available in the text.

Cited by 6 publications

References 29 publications

Demystifying African American Spirituality: Exploring the Measurement of Spirituality in the Context of Medical Decision-Making

Demystifying African American Spirituality: Exploring the Measurement of Spirituality in the Context of Medical Decision-Making

The German version of the Mini Suffering State Examination (MSSE) for people with advanced dementia living in nursing homes

Addressing insufficient access to palliative care: what stakeholders can do?

Contact Info

Product

Resources

About