Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

Stajduhar, Kelli; Giesbrecht, Melissa; Mollison, Ashley; Dosani, Naheed; McNeil, Ryan

doi:10.1177/0269216320917875

Cited by 22 publications

(31 citation statements)

References 32 publications

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“…As it turns out, safety should not be merely understood as a function of professional healthcare but rather as a multifactorial product. Available conceptualizations in relevant literature suggest 4 elements of patient safety: 7,32 -34 the individual patient, formal care, informal care, and external factors (see Figure 5). This perspective on the one hand assigns patients themselves responsibility for their own safety.…”

Section: Discussionmentioning

confidence: 99%

Patient Safety in Palliative and End-of-Life Care: A Text Mining Approach and Systematic Review of Definitions

Carrasco

Volberg

Pedrosa

et al. 2020

Am J Hosp Palliat Care

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Background: Patient safety has gained an increasing profile as a crucial element of healthcare. However, not only is there little evidence on the relevance of the term in the palliative and end-of-life care literature but also a lack of a precise and uniform definition. Method: With a text mining approach occurrence of the term patient safety was determined in all available abstracts of 10 palliative and end-of-life care journals. Furthermore, 4 electronic databases (MEDLINE, EMBASE, CINAHL and PSYCINFO) were searched supplemented by hand-searching of relevant literature to identify and conceptualize published definitions of patient safety in the palliative and end-of-life care context. Publications were independently assessed against inclusion criteria by 2 authors. Results: Our search of 14,351 abstracts yielded 41 hits for “patient safety” ranking 2,345 in the list of most commonly encountered tokens. We identified 11 definitions of patient safety stemming from 11 publications. Definitions differed with regard to the concept of process or outcome. They also allowed distinctive perspectives on the extent to which patient care influences patient safety. Lastly, exact wording led to discrepancies in the understanding of unsafe care and generalizability of definitions. Conclusion: Our results indicate that patient safety has gradually gained importance in palliative and end-of-life care. However, as key elements of definientia varied considerably no consensus definition could be identified. Nevertheless, a universal definition would help to facilitate communication and exchange of information among individuals and organizations involved in palliative and end-of-life care.

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Section: Discussionmentioning

confidence: 99%

Patient Safety in Palliative and End-of-Life Care: A Text Mining Approach and Systematic Review of Definitions

Carrasco

Volberg

Pedrosa

et al. 2020

Am J Hosp Palliat Care

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“…Certain social locations related to age, literacy, language and pre-existing poverty appeared to be more likely to be associated with difficulties navigating welfare systems; potentially at greater risk of disadvantage. At end-of-life, poor outcomes related to complex care systems for the structurally vulnerable 5,19 and considerable inequity in financial support 11 have been identified. Palliative care clinicians must therefore perceive social needs related to income support and housing as an ‘essential component(s) of palliative care’ 5 and develop current social policy literacy to support timely access to assistance.…”

Section: Discussionmentioning

confidence: 99%

“…15 Welfare systems constitute structural determinants of carer experience that may perpetuate disadvantage, or 'institutional inequity'. 16 Patients and carers positioned as 'structurally vulnerable', due to intersecting social and structural forces that constrain decision-making, frame choices, and limit life options, 16,17 may be exposed to experiences of layered disadvantages at end-of-life, 18,19 and in bereavement. 20 Further exploration of structural conditions such as welfare policy and public organisations is warranted, 15 specifically in relation to vulnerably positioned carers.…”

Section: Introductionmentioning

confidence: 99%

Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

et al. 2020

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Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

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“…Further support comes from literature on carers of people with long-term conditions suggesting that managing relationships is an important, yet challenging, aspect of caring in which carers are rarely supported. 22 – 24 The data also incidentally suggested relevance of this domain to carers of patients with cognitive impairments: at one group two carers discussed how patients’ comorbid dementia led to patient-carer relationship difficulties. The impact of dementia on relationships is well documented, with subsequent impact on carers’ physical and mental health.…”

Section: Discussionmentioning

confidence: 99%

Face and content validity of the Carer Support Needs Assessment Tool (CSNAT), and feasibility of the CSNAT intervention, for carers of patients with chronic obstructive pulmonary disease

Micklewright

Farquhar

2021

Chronic Illness

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Objectives Informal carers of patients with Chronic Obstructive Pulmonary Disease (COPD) have unmet support needs. Evidence relating to carers’ support needs in chronic conditions informed version 3 of the Carer Support Needs Assessment Tool (CSNAT) which forms part of an intervention to identify and address carer support needs. Aim of study: to establish the face and content validity of CSNAT v3 for use with COPD carers and explore their views on delivery of the CSNAT Intervention in practice. Methods Focus groups conducted September-October 2019 in non-clinical settings recruited eleven COPD carers (two to six participants per group). COPD patients ( n = 2) attended one group to facilitate carer attendance, the impact of which is discussed. Most participating carers were female ( n = 10); carers’ ages ranged 52–79 years. Results CSNAT v3 was easy to understand and complete, and all 15 domains were considered relevant and appropriate, suggesting good face and content validity. The demeanour, relational skills, and knowledge of the CSNAT facilitator appeared more important to carers than being a certain practitioner type. Discussion COPD carers considered the CSNAT Intervention an acceptable way of identifying and responding to their needs. The intervention could potentially be delivered through a range of services.

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Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

Cited by 22 publications

References 32 publications

Patient Safety in Palliative and End-of-Life Care: A Text Mining Approach and Systematic Review of Definitions

Patient Safety in Palliative and End-of-Life Care: A Text Mining Approach and Systematic Review of Definitions

Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

Face and content validity of the Carer Support Needs Assessment Tool (CSNAT), and feasibility of the CSNAT intervention, for carers of patients with chronic obstructive pulmonary disease

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