Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore

Lee, Geok Ling; Ow, Rosaleen; Ramaswamy, Akhileswaran; Goh, Cynthia

doi:10.1179/1743291x12y.0000000041

Cited by 8 publications

(32 citation statements)

References 24 publications

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“…The patient’s sense of self, body image and spirituality impacts their sense of dignity. Thus age-appropriate care [ 7 , 84 , 103 – 105 ] that also respects the patient’s physical characteristics [ 83 – 85 , 106 – 111 ], culture [ 75 , 78 , 82 , 92 , 94 ] and beliefs [ 95 , 112 , 113 ] is essential to maintaining the patient’s self-image [ 7 , 82 , 84 , 104 , 108 , 114 – 118 ] and well-being [ 75 , 81 , 83 , 84 , 89 , 95 , 98 , 100 , 110 , 112 , 119 – 128 ]. Failure to respect this holistic concept replete with physical, cultural, age, gender, spiritual and social narrative [ 95 , 112 , 113 ] may result in a negative body image [ 7 , 82 , 84 , 104 , 108 , 114 – 118 ], a loss of self [ 6 , 7 , 87 , 91 , 102 , 104 , 118 , 129 – 135 ] and a loss of will to live [ 136 ].…”

Section: Resultsmentioning

confidence: 99%

“…Conversely uncertainty [ 7 , 140 , 143 ], changing disease trajectories and prognosis [ 78 , 88 , 93 , 105 , 108 , 120 , 147 , 156 , 157 ], functional deterioration [ 6 , 7 , 83 , 84 , 87 , 88 , 93 , 95 – 97 , 102 , 104 , 108 , 109 , 115 – 118 , 128 , 129 , 132 , 140 , 147 , 158 – 161 ] and a loss of control over their financial affairs [ 95 , 111 , 121 ] impairs the patient’s ability to determine their desired place of care and death [ 116 ] and predisposes them to a sense of ‘unfinished business’ [ 7 , 98 , 118 , 131 ] and an erosion of dignity [ 6 , 78 , 82 , 83 , 87 – 93 , 108 , 110 , 112 , 121 , 146 – 148 , 152 , 153 , 162 ] and “selfhood” [ 6 , 78 , 93 , 105 , 140 , 147 ]. Poor pain control [ 87 ,…”

Section: Resultsmentioning

confidence: 99%

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A systematic scoping review on patients’ perceptions of dignity

et al. 2022

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Background A socioculturally appropriate appreciation of dignity is pivotal to the effective provision of care for dying patients. Yet concepts of dignity remain poorly defined. To address this gap in understanding and enhance dignity conserving end-of-life care, a review of current concepts of dignity is proposed. Methods To address its primary research question “How do patients conceive the concept of dignity at the end of life?”, this review appraises regnant concepts and influences of dignity, and evaluates current dignity conserving practices. To enhance accountability, transparency and reproducibility, this review employs the Ring Theory of Personhood (RToP) as its theoretical lens to guide a Systematic Evidence Based Approach guided Systematic Scoping Review (SSR in SEBA) of patient perspectives of dignity. Three independent teams of reviewers independently analysed included articles from a structured search of PubMed, Embase, PsycINFO, Scopus, CINAHL and Cochrane Databases using thematic and content analyses. The themes and categories identified were compared and combined using the Funnelling Process to create domains that guide the discussion that follows. Results Seventy-eight thousand five hundred seventy-five abstracts were identified, 645 articles were reviewed, and 127 articles were included. The three domains identified were definitions of dignity, influences upon perceptions of dignity, and dignity conserving care. Conclusions This SSR in SEBA affirms the notion that dignity is intimately entwined with self-concepts of personhood and that effective dignity conserving measures at the end of life must be guided by the patient’s concept of dignity. This SSR in SEBA posits that such personalised culturally sensitive, and timely support of patients, their family and loved ones may be possible through the early and longitudinal application of a RToP based tool.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

A systematic scoping review on patients’ perceptions of dignity

et al. 2022

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“…Search terms and MeSH / keyword terms were collated for two key concepts: feasibility/pilot designs and palliative care participants. An academic librarian (University of South Australia) reviewed the preliminary search strategy and search terms and provided feedback regarding its conceptualisation, operators (operational terms), limiters, and overall accuracy [16]. The final searches (adapted for use in all databases) were conducted by two independent researchers (T.A.J.…”

Section: Information Sources and Search Strategymentioning

confidence: 99%

Feasibility and Pilot Studies in Palliative Care Research: A Systematic Review

Jones

Olds

Currow

et al. 2017

Journal of Pain and Symptom Management

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Context. Feasibility and pilot study designs are common in palliative care research.Finding standard guidelines on the structure and reporting of these study types is difficult. Objectives.In feasibility and pilot studies in palliative care research, to determine (1) how commonly a priori feasibility are criteria reported and whether results are subsequently reported against these criteria?; and (2) how commonly are participants' views on acceptability of burden of the study protocol assessed? Methods. Four databases (OVID Medline, EMBASE, CINAHL, and PubMed via caresearch.com.au.) were searched. Search terms included palliative care, terminal care, advance care planning, hospice, pilot, feasibility, with a publication date between 1 January 2012 and 31 December 2013. Articles were selected and appraised by two independent reviewers. Results. Fifty-six feasibility and/or pilot studies were included this review. Only three studies had clear a priori criteria to measure success. Sixteen studies reported participant acceptability or burden with measures. Forty-eight studies concluded feasibility. Conclusion. The terms 'feasibility' and 'pilot' are used synonymously in palliative care research when describing studies that test for feasibility. Few studies in palliative care research outline clear criteria for success. The assessment of participant acceptability and burden is uncommon. A gold standard for feasibility study design in palliative care research that includes both clear criteria for success and testing of the study protocol for participant acceptability and burden is needed. Such a standard would assist with consistency in the design, conduct and reporting of feasibility and pilot studies.

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“…Within the local context of Singapore, no empirically supported intervention was found to support parents of children facing chronic life-threatening illnesses in their psycho-socio-spiritual needs and provide them with the necessary psychoeducational resources. The design of Study 3 keeps in view the important role of family in end-of-life and palliative care when working with Asian populations such as those in Singapore (Dutta et al, 2019;Ho et al, 2017;Krishna et al, 2014;Lee et al, 2013). Moreover, it is consistent with Singapore's status as a forerunner in community-wide digital readiness, whereby use of smartphones is part and parcel of people's daily lives (Digital News Asia, 2017;WARC, 2017;Yip, 2019).…”

Section: Discussionmentioning

confidence: 87%

“…Hence, in order to reduce suffering and increase a sense of hope and meaning in patients and their families facing illness and impending death, family must be a critical component of any palliative care intervention in an Asian community (Ho et al, 2017(Ho et al, , 2014. The important role of family in end-of-life and palliative care has been documented in a number of studies in Singapore as well (Dutta et al, 2019;Ho et al, 2017;Krishna et al, 2014;Lee et al, 2013).…”

Section: Centeredness and Digital Readinessmentioning

confidence: 99%

Understanding lived experiences of bereaved parents of children with chronic life-threatening Illness : towards a culture-specific and meaning-oriented narrative E-writing intervention (NeW-I) for anticipatory grief support in Singapore

Dutta¹

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thank you for being the greatest supporter and critique of my academic work. My learning curve over the past four years has been the steepest that it has ever been. Your dedication to your students and research partners, your attention to the smallest of details and your passion to find justice for all will continue to inspire me regardless of where I go. Geri, your insights and ideas have been invaluable in shaping the direction of this research, I am so grateful to you for being there throughout my doctoral journey. Benny, Paul and Hilary, thank you for being good colleagues and great friends. Casuarine, Ping Ying, Priya and our entire ARCH family, your professional feedback and friendship makes you the best team a researcher could ask for. Nabilah, Wen Yi, Ariel, Faith and Jasmine, the chats and mentoring sessions that I had with you have sparked off so many ideas and possibilities; thank you for your wonderful support.

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Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore

Cited by 8 publications

References 24 publications

A systematic scoping review on patients’ perceptions of dignity

A systematic scoping review on patients’ perceptions of dignity

Feasibility and Pilot Studies in Palliative Care Research: A Systematic Review

Understanding lived experiences of bereaved parents of children with chronic life-threatening Illness : towards a culture-specific and meaning-oriented narrative E-writing intervention (NeW-I) for anticipatory grief support in Singapore

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