Experiences and health care needs of older people with End Stage Renal Disease managed without dialysis in Thailand during the last year of life

Abstract

There is a growing population of elderly patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and as yet services have not been developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care, and suffer from symptoms that could be better managed. In order to develop palliative care aimed at improving the quality of life of this group in Thailand research is required about patients? experiences, symptom burden and health care needs as the end of life approaches.
Objectives: Phase 1) to explore experiences and health care needs during the last year of life among older people with ESRD managed without dialysis from the perspective of bereaved carers; Phase 2) to develop/adapt the VOICES (View of Informal Carers – Evaluation of Service) questionnaire for use in Thailand; and Phase 3) to conduct a pilot survey to test and refine the VOICES questionnaire. A mixed-method exploratory design underpinned the approach to this study.
Phase 1: Retrospective, exploratory semi-structured interviews and purposive sampling were used to collect data from 12 bereaved relatives of patients who had attended two hospitals in one region in Thailand. Interviews were digitally recorded, transcribed and analysed using framework analysis, and results used to develop the VOICES Thai prototype. The experiences and health care needs of older people with ESRD managed without dialysis were explored under four main themes, including: 1) symptom experiences; 2) impacts; 3) symptom management; and 4) health care needs and utilisation. Findings confirmed patients? needs were not being met, and the need to develop approaches to symptom management (pain and breathlessness) at home, health education, and psychological and spiritual support at the end of life.
Phase 2: A cognitive interviewing technique was implemented, using two cycles of data collection with a sample of 10 bereaved carers and a prototype of the Thai VOICES questionnaire. These data were analysed using content analysis. A culturally specific questionnaire was generated during this second phase and issues with questionnaire design rectified.
Phase 3: A small-scale pilot survey of an interviewer-administered Thai-VOICES questionnaire with a sample of 20 bereaved carers was conducted. Two main factors affected response rate: method of recruitment and interview method. The telephone interview was considered to be the best choice for conducting a national survey in the Thai context. The resulting VOICES-ESRD questionnaire can now be used to generate evidence about the needs of patients with ESRD in Thailand and inform future policy and practice.

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Identifiers

ORCID for A. Richardson: orcid.org/0000-0003-3127-5755

ORCID for L. Brindle: orcid.org/0000-0002-8933-3754

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