Seeking healthcare services post-stroke: a qualitative descriptive study exploring family caregiver and stroke survivor perspectives in an asian setting

Aim Exploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers. With limited literature documenting the role of caregivers in the healthcare journey post-stroke, we aimed to describe the healthcare experiences of family caregivers and stroke survivors across different caregiver identities in Singapore. Methods We conducted a qualitative descriptive study involving semi-structured interviews with transcripts analysed using thematic analysis. 26 stroke survivors and 35 family caregivers purposively sampled from multiple settings. Results Findings were summarized into seeking care and experience of healthcare encounters. Seeking care comprised of the following themes: factors influencing seeking care, decision to seek care and role of caregiver in seeking care. Experience of healthcare encounters comprised of the following themes: service around the patient, service with care and role of caregiver in healthcare encounters. Conclusion Multi-dimensional role of caregivers in healthcare experience emerged as a major finding. Unique to our Asian context, as per the participants’ accounts, family caregivers seemed to be central in healthcare decision-making for stroke survivors, with adult-child caregivers commonly reported being engaged in collaborative decision-making. While spousal caregivers preferred a relational healthcare experience, adult-child caregivers preferred a transactional one. Practical implications include equipping caregivers with skillset to make healthcare decisions, provision of supportive decision-making environment for caregivers and reinforcing communication aspects in the medical, nursing and allied healthcare curriculum to improve healthcare experience. Supplementary Information The online version contains supplementary material available at 10.1186/s12883-021-02463-7.

ST, AC, AF and ZL.

Credentials
What were the researcher's credentials? E.g. PhD, MD The study was based on the principles of qualitative description, in which qualitative approach is adopted to get participants' experiences and perceptions of the phenomenon being studied (post-stroke healthcare seeking experience of stroke survivors and their caregivers).
Further researchers used thematic analysis to analyze the data. Please refer Page -6 for further details on data analysis.

Presence of nonparticipants
Was anyone else present besides the participants and researchers?
Non-participants were not present when interviews were conducted.

Description of sample
What are the important characteristics of the sample? e.g. demographic data, date Information about the demographic information was collected for all participants and is presented in Table  3.

Data collection
17. Interview guide Were questions, prompts, guides provided by the authors? Was it pilot tested?
Interview guide was used to collect data and it was pilot tested. Topic guide is presented in Table 1.

Repeat interviews
Were repeat inter views carried out? If yes, how many?
There were no repeat interviews.

Audio/visual recording
Did the research use audio or visual recording to collect the data?
Interviews were audio-recorded and transcribed verbatim.

Field notes
Were field notes made during and/or after the inter view or focus group?
Field notes were taken, and memos were written post interviews.

Duration
What was the duration of the inter views or focus group?
Interviews generally lasted from 28 to 58 minutes.

Data saturation
Was data saturation discussed? Yes, data collection was stopped once the researchers observed recurring themes emerging.

Transcripts returned
Were transcripts returned to participants for comment and/or correction?
Transcripts were not returned to the interviewees.

Domain 3: analysis and findings
Data analysis 24. Number of data coders How many data coders coded the data?
ST was the primary coder, with a subset of interviews being coded by AC. Coding consistency was checked by coders via discussions among the team.

Description of the coding tree
Did authors provide a description of the coding tree?
The authors provided a description of main themes and sub-themes along with providing a diagrammatic summary based on synthesis of themes.

Derivation of themes
Were themes identified in advance or derived from the data?
Themes were related to subject matter in the topic guide, along with emerging themes which were inductively derived from data.

Software
What software, if applicable, was used to manage the data?
NVivo 12 qualitative data analysis software.

Participant checking
Did participants provide feedback on the findings?
Researchers didn't conduct participant checking of research findings.

Quotations presented
Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? e.g. participant number Yes, quotations were identified by participant number and whether the participant was a patient or caregiver.

Data and findings consistent
Was there consistency between the data presented and the findings?
We have attempted to present our findings in a clear manner, consistent with the data collected.

Clarity of major themes
Were major themes clearly presented in the findings? Yes

Clarity of minor themes
Is there a description of diverse cases or discussion of minor themes?
Yes, the authors have presented description of all major and minor themes within the manuscript Abbreviations: ST = Shilpa Tyagi, AC= Audrey Swee Ling Chan, AF= Aysha Farwin, ZL=Zunairah Binti Lukman, SSHSPH, NUS = Saw Swee Hock School of Public Health, National University of Singapore.