A Burden to Others: A Common Source of Distress for the Terminally Ill

Wilson, Keith G.; Curran, Dorothyann; McPherson, Christine

doi:10.1080/16506070510008461

Cited by 158 publications

(138 citation statements)

References 28 publications

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“…Similarly, the findings of Rehnsfeldt et al (2014) study in Denmark, Sweden and Norway showed that patients care was carried out based on routinized care without considering individual's self-worth and dignity (Rehnsfeldt et al, 2014). Although there is lack of evidence regarding cancer patients' perception of dignity in Iranian context, but the findings of few studies suggest that the dignity of Iranian patients is not completely maintained in clinical settings (Wilson et al, 2005;Nayeri et al, 2011;Ebrahimi et al, 2012).…”

Section: Discussionmentioning

confidence: 99%

Perceptions of Iranian Cancer Patients Regarding Respecting their Dignity in Hospital Settings

Avestan¹,

Rahmani²,

Nabavi³

et al. 2015

Asian Pacific Journal of Cancer Prevention

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Background: There are several factors that threaten the dignity of cancer patients in hospital settings. However, there is limited literature regarding the degree to which dignity of cancer patients is actually respected in daily clinical practice. The aims of this study were therefore to explore cancer patient perceptions of respecting their dignity and related variables in an Iranian cancer specific center. Materials and Methods: This descriptivecorrelational study was carried out among 250 cancer patients admitted to a cancer specific center in East Azerbaijan Province, Iran. These patients were selected using a convenience sampling method. The Patient Dignity Inventory (PDI) was used for data collection. Descriptive and inferential statistics were used for data analysis. Results: The patients' scores in 18 out of 25 items of PDI were 3 or greater which indicate the importance of considering these items in clinical settings. Also, the score of patients in three sub-scales of PDI including illnessrelated concerns, personal dignity, and social dignity were 74, 65 and 57, respectively (based on a total 100). The overall score of PDI was statistically associated with age, history of disease recurrence, education, employment and economic status of participants. Conclusions: According to the study findings the dignity of Iranian cancer patients is not completely respected in clinical settings which require special considerations. As nurses spend more time at patients' bedsides, they have an important role in maintaining and promoting dignified care.

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Section: Discussionmentioning

confidence: 99%

Perceptions of Iranian Cancer Patients Regarding Respecting their Dignity in Hospital Settings

Avestan¹,

Rahmani²,

Nabavi³

et al. 2015

Asian Pacific Journal of Cancer Prevention

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“…In many circles, the term "death with dignity" is synonymous with the right to assisted suicide and euthanasia. 62,[67][68][69][70] Several studies have reported that loss of dignity is very closely linked to why patients have either sought or, in some instances, received deathhastening assistance. 62,69 -71 According to a US survey of physician-assisted suicide and euthanasia, loss of dignity was the reason cited by physicians in 53% of cases where prescriptions had been written for the purpose of hastening death (second only to discomfort other than pain in 79% of cases).…”

Section: Loss Of Sense Of Dignitymentioning

confidence: 99%

“…Wilson, et al 62 conducted one of the few studies to directly examine the notion of burden to others among a group of 69 patients with advanced cancer. A sense of burden to others was common in this group of patients: 39% reported a minimal to moderate concern and 38% reported moderate to severe levels of distress around being a burden to others, whereas only 23% reported that they experienced no sense of burden.…”

Section: Burden To Othersmentioning

confidence: 99%

Dying, Dignity, and New Horizons in Palliative End-of-Life Care

Chochinov

2006

CA: A Cancer Journal for Clinicians

291

200

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Palliative care practitioners are now better able than ever before to ameliorate endof-life symptom distress. What remains less developed, however, is the knowledgebase and skill set necessary to recognize, assess, and compassionately address the psychosocial, existential, and spiritual aspects of the patient's dying experience. This review provides an overview of these areas, focusing primarily on empirical data that has examined these issues. A brief overview of psychiatric challenges in end-of-life care is complemented with a list of resources for readers wishing to explore this area more extensively. The experience of spiritual or existential suffering toward the end of life is explored, with an examination of the conceptual correlates of suffering. These correlates include:hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. An empirically-derived model of dignity is described in some detail, with practical examples of diagnostic questions and therapeutic interventions to preserve dignity. Other interventions to reduce existential or spiritual suffering are described and evidence of their efficacy is presented. The author concludes that palliative care must continue to develop compassionate, individually tailored, and effective responses to the mounting vulnerability and increasingly difficult physical, psychosocial, and spiritual challenges facing persons nearing the end of life.

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“…This belief has been termed self-perceived burden, and it has been defined as "a multidimensional construct arising from care recipients' feelings of dependence and the resulting frustration and worry, which then lead to feelings of guilt at being responsible for the caregiver's hardship" (p. 111). 1 The prevalence of a problematic sense of self-perceived burden is quite high in some medical populations, ranging from 26% to 65% among patients receiving palliative care for cancer, [2][3][4][5][6] 65% to 70% among stroke survivors, 7,8 and over 70% among patients entering treatment for chronic nonmalignant pain. 9 Self-perceived burden has been correlated with measures of pain, disability, and depression in different patient groups.…”

Section: Introductionmentioning

confidence: 99%

Self-perceived burden, perceived burdensomeness, and suicidal ideation in patients with chronic pain

Wilson

Kowal

Caird

et al. 2017

Canadian Journal of Pain

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Background: Self-perceived burden and perceived burdensomeness are two apparently related constructs that have arisen independently from research in physical and mental health, respectively. Although both are associated with suicidal ideation in individuals with chronic pain, they have yet to be examined concurrently in the same group of patients. Aims: The aim of this study was to investigate the relationship between the two constructs and their differential prediction of suicidal ideation. Methods: Participants were 260 outpatients of an interdisciplinary chronic pain treatment program. Each participant completed the Self-Perceived Burden Scale (SPBS), the Interpersonal Needs Questionnaire Perceived Burdensomeness Scale (INQPBS), the Beck Scale for Suicide Ideation, and the thoughts of self-harm item of the Patient Health Questionnaire-9. Results: The SPBS and the INQPBS were both unifactorial measures with good internal consistency. They correlated significantly with one another (r = 0.50, P < 0.001), as well as with scores on the two measures of suicidal ideation (rs ranging from 0.29 to 0.62, Ps < 0.001). However, the INQPBS correlated more highly with suicidal ideation than did the SPBS. In regression analyses, the INQPBS predicted unique variance in suicidal ideation after adjusting for the SPBS. Conversely, the SPBS did not contribute uniquely when the INQPBS was entered first. Conclusions: Patients with chronic pain who believe that they have become "a burden to others" are at increased risk for suicidal ideation. The conceptual similarities and differences between the constructs of self-perceived burden and perceived burdensomeness are reviewed to explain why perceived burdensomeness is the stronger predictor of this increased risk.

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A Burden to Others: A Common Source of Distress for the Terminally Ill

Cited by 158 publications

References 28 publications

Perceptions of Iranian Cancer Patients Regarding Respecting their Dignity in Hospital Settings

Perceptions of Iranian Cancer Patients Regarding Respecting their Dignity in Hospital Settings

Dying, Dignity, and New Horizons in Palliative End-of-Life Care

Self-perceived burden, perceived burdensomeness, and suicidal ideation in patients with chronic pain

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