Introduction
Spiritual and existential concerns are increasingly recognized as core components of holistic, person-centered care, particularly in palliative care settings (Puchalski et al. Reference Puchalski, Vitillo and Hull2014; McCormack and McCance Reference McCormack and McCance2017; Batstone et al. Reference Batstone, Bailey and Hallett2020). A recent review concluded that spirituality – understood as meaning, connection, and transcendence – is associated with quality of life and coping in serious illness (Balboni et al. Reference Balboni, VanderWeele and Doan-Soares2022). In secular Northern European contexts, spiritual and existential needs are often discussed across 3 overlapping domains: religious belief, spirituality (a connection beyond the material), and non-religious existential concerns such as meaning, mortality, and identity (Sand et al. Reference Sand, Strang and Milberg2008; Gijsberts et al. Reference Gijsberts, Liefbroer and Otten2019). The European Association for Palliative Care describes spirituality as a dynamic dimension of human life related to meaning, purpose, and transcendence (Best et al. Reference Best, Leget and Goodhead2020). When unaddressed, these needs may be experienced as spiritual distress, for example, as fear, sadness, or loss of inner peace (Eshghi et al. Reference Eshghi, Payootan and Abdullahzadeh2023).
Despite increasing evidence for the value of spiritual care, spiritual and existential needs are frequently under-assessed in routine clinical practice (Balboni et al. Reference Balboni, VanderWeele and Doan-Soares2022). Once identified, such needs can be supported through respectful listening and trustful relationships that enable existential conversations with patients and their next of kin (Lagerin et al. Reference Lagerin, Melin-Johansson and Holmberg2025). Several brief spiritual history-taking tools have been developed to support clinicians in this work (Lucchetti et al. Reference Lucchetti, Bassi and Lucchetti2013). Among these, the HOPE tool has been used internationally for more than 2 decades (Anandarajah and Hight Reference Anandarajah and Hight2001) and has been considered suitable for multicultural contexts (Blaber et al. Reference Blaber, Jones and Willis2015). A recent scoping review summarized HOPE’s continued clinical and research use across diverse settings (Sleeth et al. Reference Sleeth, Gottlieb and Srinivasan2025).
A foundational Swedish translation of the original 18-item HOPE tool was previously piloted in specialized palliative care, and formative feedback suggested that refinement and cultural adaptation could improve clinical applicability in a secular and multicultural Swedish context, including clearer everyday language and prompts addressing non-religious existential concerns (Sundelöf et al. Reference Sundelöf, Holmberg and Melin-Johansson2022). Sweden still lacks a peer-reviewed publication describing an expert-reviewed Swedish culturally adapted version of the HOPE tool suitable for exploring both religious, spiritual, and non-religious existential concerns. Therefore, the aim of this study was to develop a culturally adapted Swedish version (HOPE-SE) and assess its comprehensibility and perceived relevance and coverage (evidence for content validity) from the perspective of specialized palliative care professionals.
Aim
This study aimed to develop a culturally adapted Swedish version (HOPE-SE) and assess its comprehensibility (face validity) and perceived relevance and coverage (content validity) among specialized palliative care professionals. The specific aims were to: (1) simplify wording to everyday Swedish; (2) avoid compound questions by ensuring 1 main concept per prompt; (3) reduce redundancy and keep the number of prompts feasible for routine clinical use; (4) include prompts for non-religious existential concerns; and (5) simplify administration by removing skip instructions.
Methods
Design
This observational cross-sectional study reports an expert evaluation of intended users as part of a multi-phase development program within the research initiative “Talk for life – conversations in palliative care.” The expert evaluation served as a pre-testing phase of the draft culturally adapted Swedish version, HOPE-SE, combining a structured written evaluation with cognitive debriefing interviews. The study is reported in accordance with the STROBE statement (von Elm et al. Reference von Elm, Altman and Egger2007).
Development and cultural adaptation procedure
A foundational Swedish translation of the original 18-item HOPE tool was developed in 2012–2013 using forward and backward translation and review by a translation team of clinicians and researchers, guided by published cross-cultural adaptation procedures (Beaton et al. Reference Beaton, Bombardier and Guillemin2000; Wild et al. Reference Wild, Grove and Martin2005; Sousa and Rojjanasrirat Reference Sousa and Rojjanasrirat2011). Building on that Swedish draft and formative pilot feedback of the original HOPE tool, indicating a need for refinement in a secular and multicultural context (Sundelöf et al. Reference Sundelöf, Holmberg and Melin-Johansson2022), the authors (J.S., B.H., C.M.-J.) initiated a structured refinement in 2022. A key design goal was feasibility in routine clinical practice. This meant brief wording in everyday Swedish, a manageable number of prompts, and a format that could be used by interdisciplinary clinicians as a flexible conversation guide without requiring extensive specialist training. Local orientation and referral pathways may support implementation. In order to simplify administration, the skip instructions in the original version were removed. These steps resulted in a 16-item Swedish draft (HOPE-SE) organized in the same 4 domains as the original HOPE (H, O, P, and E). Table 1 summarizes the foundational Swedish translation of the HOPE tool.
Foundational Swedish translation of the original 18-item HOPE tool (2012–2013)
Refinement and further development
Participants and setting
In 2024/2025, an interdisciplinary expert panel (N = 18) was recruited from specialized palliative care services in Sweden, including permanent employee physicians, registered nurses, and counselors/social workers using purposeful sampling. Inclusion criteria were clinical experience in specialized palliative care and willingness to evaluate HOPE-SE from a clinical user perspective.
Data collection
Participants completed a demographic web questionnaire covering information such as age, sex, profession, workplace, and experience in specialized palliative care. Data were also collected using a structured written evaluation form developed by the authors of this study, followed by evaluative interviews for cognitive debriefing (Wild et al. Reference Wild, Grove and Martin2005; Brod et al. Reference Brod, Tesler and Christensen2009). The written form included 15 statements: yes/no items and free-text comment fields focusing on comprehensibility, usability, and perceived coverage.
The interviews were facilitated by the authors and explored perceived relevance, appropriateness of wording and concepts, and suggestions for improvement. Interviews were collected through focus group interviews and individual interviews via secure digital audio recordings (Tong et al. Reference Tong, Sainsbury and Craig2007) and transcribed. Focus group interviews lasted 47–87 minutes (median 67 minutes), and individual interviews lasted 28–73 minutes (median 57 minutes).
Data analysis
The analysis focused on recurring feedback and recommendations, consistent with standards for cultural validation and cognitive debriefing. The analysis aimed to identify actionable areas for refinement rather than quantify the frequency of individual suggestions; therefore, categories are presented descriptively using qualitative quantifiers (e.g., some, a few, several).
Yes/no responses from the written evaluation were described using numbers (n) and percentages (%); there were no missing data. Free-text answers were read and re-read to gain an overall understanding of the content, compared with the 16-item draft version of HOPE-SE, and used to inform further revision. All authors carried out the analysis in collaboration.
The interview data were analyzed using inductive qualitative descriptive analysis in accordance with established guidelines (Elo and Kyngäs Reference Elo and Kyngäs2008). Examples of the analysis of transcribed interviews are presented in Table 2. Relevant interview text was identified, extracted, and sorted into categories, supported by quotations. The tentative categories were discussed by all authors until consensus was reached.
Examples of the analysis of transcribed interviews
To finalize the HOPE-SE, the authors independently reviewed and revised each item to ensure clarity, neutrality, and cultural appropriateness, with particular attention to non-emotive, inclusive language capturing religious, spiritual, and non-religious existential needs. Modifications were made to improve linguistic and cultural relevance, including deviations from the original phrasing when direct translation was not feasible; culturally specific or untranslatable terms were replaced with Swedish equivalents while preserving meaning. Findings and suggested refinements from the written evaluation and interviews were discussed by the authors, and a final HOPE-SE tool was developed based on consensus discussions.
Results
Demographic and clinical characteristics
Demographic and clinical characteristics of the participants are described in Table 3. Eighteen experts working in specialized palliative care participated: 6 nurses, 9 physicians, and 3 social workers. Most participants were aged 35–44 years (n = 8) and female (n = 15). Many had worked in their current workplace for 3–5 years and were employed in specialized palliative home care.
Participant characteristics (N = 18)
Written evaluation (structured questionnaire and free-text comments)
All 18 experts completed the structured written evaluation and provided illustrative free-text comments. Free-text comments and transcripts were grouped into 4 categories: perceived usefulness, wording and clarity, conceptual distinctions, and suggestions for missing content and preferred format (Table 4).
Structured written evaluation of HOPE-SE (N = 18)
Supporting conversations about existential, spiritual, and religious concerns
Across written responses, experts described HOPE-SE as understandable as well as potentially useful as structured support for initiating conversations that may otherwise be overlooked in clinical practice (Table 4). As one expert noted, it “creates an entrance/opening to ask about existential needs based on clear questions” (P9). Another emphasized that the guide may be most useful when used flexibly, as support that can be rephrased and adapted to what emerges in the conversation (P3).
Addressing spirituality and religiosity with sensitivity and relationship awareness
In the structured written evaluation, experts emphasized that spiritual and religious prompts may presuppose trust and continuity in the clinician-patient relationship. Several comments suggested that some questions – particularly those involving abstract concepts – may be cognitively demanding for patients, whereas more general care-related questions may feel less intrusive. Experts also noted that religious needs may become particularly visible when illness limits patients’ ability to practice their faith (e.g., attending services or performing rituals) (Table 4).
Refining wording and strengthening conceptual clarity
From the structured written evaluation analysis, a recurring theme was the need to refine formulations for clarity and cultural appropriateness. For example, several experts suggested rephrasing direct wording such as “Are you religious?” to a gentler alternative (e.g., “Do you have a faith?”). The Swedish term troende (“believer”) was described as potentially ambiguous, and experts noted that patients may not clearly distinguish between religious, spiritual, and existential concerns, indicating a need for brief clarification or clinician guidance and reflective competence to navigate these concepts. Experts also suggested avoiding compound questions (e.g., combining “hope” and “meaning”) and questioned whether some prompts might overlap (e.g., “inner peace”), potentially increasing redundancy.
Identifying missing content and preferred format, several experts requested clearer prompts addressing what patients perceive they need in terms of help and support, including practical support related to rituals or contact with a faith community when relevant (Table 4). Suggested additions also included prompts concerning guilt/shame and other existential concerns not otherwise captured in the core questions. Finally, experts expressed that binary yes/no formulations may restrict reflection and recommended more open-ended phrasing and a natural conversational flow. Some experts also preferred framing HOPE-SE explicitly as a flexible conversation guide rather than a screening instrument, allowing adaptation to patient readiness and clinical time constraints.
Interview findings (cognitive debriefing)
All 18 experts participated in cognitive debriefing interviews, conducted as 4 focus groups (n = 13) and individual interviews (n = 5). Interview data were organized into 2 main categories – Possibilities and Barriers – with 6 sub-categories supported by quotations (Table 5). The results from the interviews identified new perspectives and confirmed the content that emerged in the free-text answers.
Main categories and sub-categories from cognitive debriefing interviews with illustrative quotes (N = 18)
Possibilities
Experts described that HOPE-SE can open up conversations about existential, spiritual, and religious issues and provide legitimacy for raising sensitive topics, particularly when routine use reduces stigma and “demystifies” such discussions. HOPE-SE was also perceived as supporting a patient-centered approach by shifting attention from tasks to the patient’s broader situation and needs. Finally, the structured format was described as a strength by providing a manageable framework for clinicians who may feel uncertain about how to initiate existential conversations.
Barriers
Experts emphasized that direct questions about religion or spirituality may feel private and can be challenging without a trusting relationship and sufficient competence to handle emotional reactions. Participants also perceived that the tool would benefit from a clearer prompt regarding what support the patient wants or needs, including practical support related to rituals or other valued practices. Finally, some questions were described as vague or conceptually demanding; experts recommended using clearer, open-ended formulations and allowing space for additional existential concerns not otherwise captured.
Revisions and the final HOPE-SE
Based on expert feedback and the integration of all data, the authors made minor wording refinements, clarified potentially sensitive formulations, and added a brief consent-based introductory statement to support patient autonomy and appropriate timing. Suggestions for additional optional probes were discussed; only those considered feasible and broadly applicable were incorporated in the core tool, while others may be considered in future patient-based evaluation and implementation work. The final HOPE-SE was approved by all experts and by the original HOPE tool author (Table 6).
The final culturally adapted Swedish version of the HOPE tool (HOPE-SE)
Note: Brief consent-based introduction (suggested): “HOPE-SE is a guide with questions that can help us talk about what gives you strength and what is important to you. We ask because this can matter for how we can best support you. You decide what you want to answer, and we can stop at any time.”
Discussion
This study developed a culturally adapted Swedish version of the HOPE tool (HOPE-SE) and evaluated its comprehensibility, perceived relevance, and coverage through an expert panel in specialized palliative care. Across written feedback and cognitive debriefing interviews, experts described HOPE-SE as understandable and potentially useful for legitimizing conversations about existential, spiritual, and religious concerns that may otherwise remain unaddressed. At the same time, the findings emphasize that direct religious or spiritual prompts can be perceived as private and require sensitivity, trust, and appropriate timing in the clinical encounter.
Several brief spiritual history-taking tools are available for clinical practice, including FICA (Puchalski and Romer Reference Puchalski and Romer2000), SPIRIT (Maugans Reference Maugans1996), and the recently developed I-SPIRIT (Steinhauser et al. Reference Steinhauser, Fitchett and Handzo2024). Reviews of these tools emphasize that they should be applied as flexible guides rather than rigid screening instruments and that reported validation work is heterogeneous across settings (Lucchetti et al. Reference Lucchetti, Bassi and Lucchetti2013; Sleeth et al. Reference Sleeth, Gottlieb and Srinivasan2025). In line with this literature, experts in our study valued HOPE-SE primarily as a clinician-administered conversation guide that offers structure without requiring scoring. The focus on hope, meaning, and sources of support may be particularly congruent with palliative care values and can help clinicians initiate and sustain person-centered dialogue (Blaber et al. Reference Blaber, Jones and Willis2015; Balboni et al. Reference Balboni, VanderWeele and Doan-Soares2022).
Beyond explicitly religious prompts, in addition to items in the original HOPE tool, HOPE-SE includes non-religious existential themes such as current priorities/values, sources of support, hopes, worries, strength, and prior coping resources, positive affect, calm/inner peace, and how illness may affect what matters most. These themes overlap with domains included in spiritual-needs questionnaires used in palliative and chronic illness contexts, such as the Spiritual Needs Questionnaire, which contains existential and inner peace needs and items on fears/worries and meaning, and the Spiritual Needs Assessment for Patients, which includes a psychosocial domain alongside spiritual and religious needs (Sharma et al. Reference Sharma, Astrow and Texeira2012; Büssing Reference Büssing2021). By integrating these concerns into a brief clinician-administered conversation guide based on the original HOPE questions, HOPE-SE may be particularly well suited to multicultural contexts, including secular settings in which existential distress is not articulated in explicitly religious or spiritual terms.
The Swedish context is characterized by high secularization and increasing cultural diversity, which can make the concepts “spirituality” and “religion” both sensitive and ambiguous. Experts noted that patients may not distinguish between religious, spiritual, and existential concerns, and that clinicians may need brief guidance and reflective competence to navigate these concepts.
These observations echo earlier work describing clinicians’ uncertainty in spiritual care and the importance of relational competence, patient readiness, and consent when exploring existential concerns (Selman et al. Reference Selman, Brighton and Sinclair2018; Balboni et al. Reference Balboni, VanderWeele and Doan-Soares2022). Overall, the expert panel perceived that the refinements using more everyday language and clearer prompts made HOPE-SE more accessible and usable as a practical conversation guide. Clinicians also described a substantial clinical need for a tool that can serve as a starting point for conversations, regardless of the patient’s belief system, when existential questions arise in multicultural, multi-faith, and secular contexts. In response to the expert feedback, we added a brief consent-based introduction to support acceptability and patient autonomy, reinforcing that HOPE-SE should be used when, and only if, the patient wishes to engage.
Methodological considerations
Cross-cultural adaptation aims to achieve semantic, idiomatic, experiential, and conceptual equivalence so that prompts are understandable, culturally appropriate, and capture the intended concepts in the target context (Beaton et al. Reference Beaton, Bombardier and Guillemin2000; Wild et al. Reference Wild, Grove and Martin2005; Sousa and Rojjanasrirat Reference Sousa and Rojjanasrirat2011). The modifications in HOPE-SE – simplifying language, avoiding compound prompts, and explicitly including non-religious existential concerns – were guided by these principles and by formative feedback from the Swedish pilot. In terms of measurement theory, this study provides initial evidence for face validity and for content-related aspects such as comprehensibility, relevance, and coverage from the perspective of intended clinical users. However, in line with Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidance, full evaluation of content validity requires involvement of the target population (patients) to confirm relevance, comprehensibility, and comprehensiveness from the patient perspective (Terwee et al. Reference Terwee, Prinsen and Chiarotto2018).
Implementation considerations
HOPE-SE should be regarded as a conversation guide for spiritual history-taking rather than a tool for routine screening. A short consent-based introduction may help to clarify the purpose of the questions, support patient choice, and mitigate the risk that some prompts (especially religious ones) are experienced as intrusive. Clinicians should use HOPE-SE flexibly, prioritizing patient readiness and clinical context, and should be aware of local referral pathways (e.g., chaplaincy, counseling, psychology) when needs are identified.
Strengths and limitations
Strengths include a structured multi-phase development process anchored in published cross-cultural adaptation procedures, clear refinement aims, an interdisciplinary expert panel, and triangulation across written feedback and cognitive debriefing interviews. The study approach, involving intended end-users in specialized palliative care, supported iterative, actionable revisions and enhanced credibility. The following limitations should be considered. The expert panel was purposively recruited and relatively small, and the findings may not represent perspectives in other Swedish healthcare settings. Because HOPE-SE is intended as a flexible clinician-administered conversation guide rather than a scored instrument, the study focused on comprehensibility, perceived relevance, and coverage; thus, other measurement properties (e.g., reliability, construct validity, and responsiveness) were not assessed. In addition, no widely accepted Swedish gold standard exists for criterion comparison. Importantly, this phase reflects clinician perspectives only. In line with COSMIN guidance, patient cognitive interviews and feasibility testing in routine care are required to confirm relevance, comprehensibility, and comprehensiveness from the patient perspective. Finally, interviews were conducted by the research team, which may have influenced responses, although the combination of written comments and investigator triangulation aimed to mitigate this risk.
Conclusion
HOPE-SE is the first expert-reviewed Swedish conversation guide intended to support clinicians in exploring existential, spiritual, and religious concerns in a secular and multicultural healthcare context. Future studies should include patient involvement to fully evaluate content validity and explore implementation in Swedish healthcare settings.
Data availability statement
Data supporting the findings of this study are not publicly available due to the qualitative and potentially sensitive nature of the interview material but are available from the corresponding author upon reasonable request. De-identified excerpts may be shared to support verification of the analysis.
Acknowledgments
The authors thank the healthcare professionals who generously shared their experiences. The authors are also grateful to Professor Emerita Valerie DeMarinis, PH.D. (Umeå University, Sweden), for contributions to the foundational Swedish translation work, and to Professor David Thurfjell, PH.D. (Södertörn University, Sweden), for input during the back-translation and early development of the Swedish HOPE draft.
Author contributions
Conceptualization/methodology: J.S., B.H., C.M.-J. Investigation: J.S., B.H., C.M.-J. Formal analysis: J.S. and C.M.-J. (written data); B.H. (interview data) with input from J.S. and C.M.-J. Writing – original draft: J.S. Writing – review and editing: J.S., B.H., C.M.-J. Supervision: C.M.-J.
Funding
Open access funding was provided by Uppsala University. Support for the ethical review application and language editing was provided by Mid Sweden University. No other specific grant from any funding agency, commercial or not-for-profit sectors, was received.
Competing interests
The authors declare no competing interests.
Ethical approval
The study was approved by the Swedish Ethical Review Authority (Dnr 2021-04117). All participants received study information and provided written informed consent prior to participation by completing the demographic web questionnaire. All procedures were conducted in accordance with the Declaration of Helsinki (World Medical Association 2025). Participants consented to publication of de-identified analyses of results.
AI tool statement
Generative AI (OpenAI ChatGPT, model GPT-5.2 Pro; accessed via the ChatGPT interface in February 2026) was used to refine English wording and improve clarity of the manuscript. The tool was not used to generate study data, perform data analysis, or generate scientific conclusions. All edits were reviewed and approved by the authors, who take full responsibility for the content.
Open access
