The Experiences of Suffering of Palliative Care Informal Caregivers in Malaysia

Abstract

A qualitative study was conducted with semi-structured interviews to explore the experiences of suffering in 15 palliative care informal caregivers in University Malaya Medical Centre. The data were thematically analyzed. Seven basic themes were generated (1) empathic suffering, (2) anticipatory grief, (3) obsessive-compulsive suffering, (4) helpless-powerless suffering, (5) obligatory suffering, (6) impedimental suffering, and (7) repercussion suffering. A model of compassion suffering was conceptualized from the analysis. This model may serve as a guide in the assessment and management of suffering in palliative care informal caregivers.

Family Anticipatory Grief: An Integrative Literature Review

“…25,29 Hope The presence of the patient allows hope and accentuates the sense of responsibility of the caregiver who is willing to sacrifice everything to keep the patient alive; ultimately, this guarantees that the relative continues absorbing all their attention and becoming the sole focus of thoughts, feelings, and actions. 28 Chapman and Pepler 37 stress that there is an inverse relationship between hope and signs of AG. However, hope remains in the entire end-of-life trajectory, although it changes along this process.…”

“…18,24,26 Others develop a religious belief that everything is decided by God, so they pray and seek protection in a transcendental entity. 28 Some people cry alone, as a way to relieve tension, but, this expression may be seen as a sign of weakness 32 , so it tends to be suppressed, for interpersonal protection, because the whole family is under stress. 25,28 To avoid the emotional burden of the patient, 26,32 the caregiver escapes from talking about death or even referring the word death in conversations.…”

“…28 Some people cry alone, as a way to relieve tension, but, this expression may be seen as a sign of weakness 32 , so it tends to be suppressed, for interpersonal protection, because the whole family is under stress. 25,28 To avoid the emotional burden of the patient, 26,32 the caregiver escapes from talking about death or even referring the word death in conversations. 18,26,38,43 Instead, they continue to talk about common projects for the future 26 Family keeps the communication closed for several reasons: bringing together the aspects of anticipating death would be an emotionally painful conversation which they feel unable to have 18,27 ; an open discussion can symbolically confirm the reality of an impending separation, so the family choose to share common hopes only 25,43 ; besides, forewarning death is felt as a disloyalty to the patient.…”

“…28,35 Here begins a deep sense of loneliness 18,25,28,37 which is even more intense when the patient stops talking and responding, setting the end of the relationship. 25,28,35 Ambivalence Thinking about death while the person is still present raises several dilemmas that cause intense ambivalence: caregivers should keep their ability to function in a combative way against the disease and simultaneously handle the tasks of end of life 25,35 ; it is also expected to take care to preserve the dignity of the sick person and, at the same time, grieve the loss of his or her personality 36 ; relatives must respect the autonomy of the patient while questioning the patient's ability to decide what is best for the situation 35 ; one has to choose between the sense of loyalty to the patient, keeping exclusive devotion to him or her or, at the other hand, to seek support in order to ease the burden, in spite of the guilt that it carries. 26,35 The caregiver must also face the decision regarding the place of death: although hospitalization may represent a relief from overload, they worry about maintaining contact and fear that a sudden worsening prevents them from seeing the patient.…”

Passer à l’action : une exploration des actions des infirmières et infirmiers en oncologie exemplaires dans les situations où un sentiment d’impuissance et de futilité est éprouvé par le personnel infirmier dans le cadre du diagnostic, du traitement et de la phase palliative

“…» et ils y répondaient presque tout le temps par l'affirmative (Boyle, 2000, p. 916). Des sentiments de regret apparaissaient souvent (Pavlish et al, 2011;Beng et al, 2013;Pavlish et al, 2012). Dans la recherche d'actions de rechange et de meilleurs résultats pour les patients, les infirmières et infirmiers voient leur force et leur courage rudement mis à l'épreuve (Kerfoot, 2012).…”