Dataset Information

Perspectives on decision making amongst older people with end-stage renal disease and caregivers in Singapore: A qualitative study.

ABSTRACT:

Background

End-stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits.

Objective

This study seeks to explore perspectives on decision making amongst older (?70) Singaporean ESRD patients and their caregivers to undergo (or not to undergo) dialysis.

Design

Qualitative study design using semi-structured interviews.

Setting and participants

Twenty-three participants were recruited from the largest tertiary hospital in Singapore: seven peritoneal dialysis patients, five haemodialysis patients, four patients on conservative management and seven caregivers.

Results

While some patients believed that they had made an independent treatment decision, others reported feeling like they had no choice in the matter or that they were strongly persuaded by their doctors and/or family members to undergo dialysis. Patients reported decision-making factors including loss of autonomy in daily life, financial burden (on themselves or on their families), caregiving burden, alternative medicine, symptoms and disease progression. Caregivers also reported concerns about financial and caregiving burden.

Discussion and conclusion

This study has identified several factors that should be considered in the design and implementation of decision aids to help older ESRD patients in Singapore make informed treatment decisions, including patients' and caregivers' decision-making factors as well as the relational dynamics between patients, caregivers and doctors.

SUBMITTER: Han E

PROVIDER: S-EPMC6803400 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Perspectives on decision making amongst older people with end-stage renal disease and caregivers in Singapore: A qualitative study.

Han Emeline E Haldane Victoria V Koh Joel Jun Kai JJK Quek Rina Yu Chin RYC Ozdemir Semra S Finkelstein Eric Andrew EA Jafar Tazeen Hasan TH Choong Hui-Lin HL Gan Sheryl S Lim Lydia W W LWW Shiraz Farah F Legido-Quigley Helena H

Health expectations : an international journal of public participation in health care and health policy 20190816 5

<h4>Background</h4>End-stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits.<h4>Objective</h4>This study seeks to explore perspectives on decision making amongst older (≥70) Singaporean ESRD patients and their caregivers to undergo ...[more]

PMID: 31418984

Similar Datasets

Project description:BACKGROUND:This is the first qualitative study to explore patient decision-making regarding end-stage kidney disease (ESKD) treatment in sub-Saharan Africa. The study addresses an important gap in the literature concerning choice and decision-making in an international context. METHODS:The study employed a qualitative research design, using grounded theory methodology. In-depth interviews were conducted with twenty-two adult patients with ESKD in 3 clinical settings in Ghana. Data analysis involved coding and a constant comparative approach to generate key themes. Ethical approval was gained from relevant ethics committees both in Ghana and the United Kingdom. RESULTS:Four main factors (personal, financial, healthcare system, and support network) were identified to influence patient decision-making regarding ESKD treatment in Ghana. Treatment was initiated for various reasons, including, initially, the urgent need to avoid premature death. Many approached their condition hoping for a cure and did not always understand the chronic nature of their condition. Financial and geographical inaccessibility of renal replacement therapy (RRT), as well as a relative lack of biomedical treatment choices, made decision making daunting for the individual with ESKD in Ghana. The subject of death or conservative management was not openly discussed. Rather patients did everything possible to seek alternative forms of treatment, including the simultaneous use of other non-RRT and traditional or faith-based healing approaches. CONCLUSIONS:Whilst similarities exist, this study illuminates stark cultural and contextual differences which make decision-making on ESKD treatment a daunting experience for the individual with ESKD in Ghana - as compared to those in high-income countries. The challenges associated with ESKD management in Ghana calls for meticulous efforts at primary prevention of the disease, including interventions directed at effective management of diabetes mellitus, hypertension and other chronic kidney disease (CKD) precursor conditions. Enhancing information provision would promote informed decision making, particularly within the initial stages of patient decision-making.

Project description:BackgroundThe Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme.MethodWe conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach.ResultsParticipants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs.ConclusionThe directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death.

Project description:BackgroundMedical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood.Methods535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- 'predialysis' (group A), 'in-centre' haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses.Results458 complete responses were available. API items have high internal consistency in the study population (Cronbach's alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p < 0.05). In the age, education and study group adjusted multiple linear regression analysis, lower age, female gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis.ConclusionESRD patients prefer to receive information, but this does not always imply active involvement in decision-making. By understanding modifiable and non-modifiable factors which affect patient preferences for involvement in healthcare decision-making, health professionals may acknowledge the need to accommodate individual patient preferences to the extent determined by the individual patient factors.

Project description:BackgroundGastrostomy is recommended in amyotrophic lateral sclerosis for long-term nutritional support, however, people with amyotrophic lateral sclerosis and healthcare professionals perceive decision-making as complex.MethodTo explore their perspectives on decision-making regarding gastrostomy, we used semi-structured interviews with people with amyotrophic lateral sclerosis, who had made a decision, and their caregivers; healthcare professionals were interviewed separately. Interviews were transcribed and analyzed thematically.ResultsIn 14 cases, 13 people with amyotrophic lateral sclerosis and 12 caregivers were interviewed; and in 10 of these cases, 5 healthcare professionals. Participants described decision-making on gastrostomy as a continuous process of weighing (future) clinical need against their values and beliefs in coming to a decision to accept or reject gastrostomy, or to postpone decision-making, while being supported by loved ones and healthcare professionals. Participants described gastrostomy as inevitable, but retained agency through control over the timing of decision-making. They said physical necessity, experiences of loss and identity, and expectations about gastrostomy placement were important factors in decision-making. Decision-making was described as a family affair, with caregivers supporting patient choice. healthcare professionals supported people with amyotrophic lateral sclerosis during the decision-making process and respected their autonomy and values. People with amyotrophic lateral sclerosis stressed the importance of adequate information on the procedure and the benefits.ConclusionPeople with amyotrophic lateral sclerosis feel in control of decision-making on gastrostomy if they are able to make their own choice at their own pace, supported by loved ones and healthcare professionals. Person-centered decision-making on gastrostomy requires early information exchange and repeated discussions with people with amyotrophic lateral sclerosis and their caregivers, incorporating their values and respecting patient choice.

Project description:BackgroundWork participation is an important determinant of public health; being unemployed leads to a decrease in an individual's health. In the Netherlands, people with a work disability can apply for disability benefits, in which people also receive support to return to work (RTW). A method, currently used in the medical sector, that can include both the perspective of the reintegration professional and of the individual in the process of RTW, is shared decision making (SDM). In this article we explore to what extent reintegration professionals currently use SDM, and to what extent they prefer to use SDM in their ideal interaction with clients.MethodsWe performed semi-structured interviews with fourteen reintegration professionals from four different municipalities. The transcripts were coded according to content analysis, applying open and axial coding.ResultsReintegration professionals emphasised the importance of having a good relationship with clients, of building trust and collaborating as a team. They did not inform their clients that they could be part of the decision-making process, or discussed a shared goal. Although professionals did emphasise the importance of aligning their approach with the preferences of the client and though they tried to offer some choice options, they did not mention available options, discussed the pros and cons of these options or evaluated decisions with their clients. Furthermore, they did not mention any of these aspects in their ideal interaction with clients.ConclusionsSDM has a potential value, because all professionals underline the importance of having an alliance with clients, collaborating as a team, and striving to align their approach with the preferences of the client. However, professionals currently perform a limited set of SDM steps. Additional knowledge and skills are needed for both reintegration professionals and municipalities so that professionals can consider and reflect on the value of using SDM, or SDM steps, in supporting RTW. Providing clients with knowledge and skills seems necessary to facilitate both self-management and SDM.

Dataset Information

Perspectives on decision making amongst older people with end-stage renal disease and caregivers in Singapore: A qualitative study.

Background

Objective

Design

Setting and participants

Results

Discussion and conclusion

Publications

Perspectives on decision making amongst older people with end-stage renal disease and caregivers in Singapore: A qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets