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Appendix 1 – Psychological processes of

Perceptions

Experiencing loss of function Experiencing everywhere Seeing family not getting enough sleep Experiencing loss of ability to do things Experiencing pain for the whole day Seeing the corpse trolley Experiencing loss of ability to walk far Experiencing pain from injections Seeing death in the hospital Experiencing loss of ability to go out Experiencing worst pain in life ‘I have seen worse cases than you’ Experiencing loss bit by bit Experiencing sleeplessness from the doctors Experiencing loss of Experiencing other symptoms Knowing that the disease is incurable Experiencing loss of while in pain Experiencing side effects of treatment Knowing that death is imminent Experiencing loss of social engagement Experiencing impoliteness of medical staff Knowing that death is inevitable Experiencing dependence on others Experiencing hospital confinement Knowing that death is unpredictable Experiencing pain Seeing family crying Knowing that no one else can die for you Experiencing pain all of a sudden Seeing family feeling scared Knowing that one is troubling the family Experiencing pain all the time Seeing family getting stressed Knowing that family is stressed

Cognitive Appraisals

Interpreting Filtering Interpreting loss of ability to do many things as worst suffering Focusing on loss Interpreting loss of ability to do things that one enjoys as no life Focusing on loss of function Interpreting lying on bed all the time as the same as a corpse Focusing on loss of a happy life Interpreting that one is no longer the same as before Focusing on burdening of others Interpreting that it is not easy to live with the changes Focusing on worrying about family Interpreting that the reminder of being sick is always there Focusing on pain Interpreting that one is depending on others for everything Focusing on side effects of treatment Interpreting that one is burdening others Focusing on dying Interpreting accepting help from others as a form of stress Focusing intensively on Interpreting depending on others as a sign of uselessness Zooming in pain and suffering Interpreting that the children are not independent enough Emphasizing loss of ability to stand Interpreting that the waiting time to see doctors is very long Emphasizing side effects of treatment Interpreting that the services of nurses are slow Mentioning fear repetitively Interpreting that receiving chemotherapy is a suffering Not focusing on what one still can do Interpreting that medical students are inconsiderate Not focusing on how to live until death Interpreting that the hospital food is not nutritious Interpreting that being sick is full of pain and suffering Magnifying Interpreting the pain experience as a terrible experience Magnifying frequent episodes of pain to a life full of suffering Interpreting a life full of pain as a life of suffering Magnifying inability to do many things to inability to do everything Interpreting feelings as the most difficult thing about being sick Magnifying partial mobility restriction to complete immobility Interpreting that God has abandoned oneself Interpreting that life is unfair Catastrophizing Interpreting that life is not worth living Catastrophizing current loss to loss of everything in the future Catastrophizing that bad things are going to happen one by one Comparing Comparing current disability with what one could do in the past Generalizing Comparing current disability with what one could enjoy in the past Generalizing that all doctors are busy Comparing current suffering with past Generalizing that everybody is scared to die Comparing current of life with past quality of life Generalizing that nobody can remain fearless at the end of life Comparing the impact of bad news as the stab of a knife Generalizing that nobody can help

Imagining Blaming Imagining oneself as a living corpse Blaming the disease for poor quality of life Imagining oneself like being trapped in the hospital Blaming the disease for hastening death Imagining oneself like being treated as an experiment Blaming God for abandoning oneself Imagining oneself like being attacked by pain one after another Blaming the devil for causing the disease

Believing Dichotomous thinking Believing that one is giving extra work to others Either to improve or die Believing that the children cannot live without oneself Either to remain functionally independent or die Believing that one is socially out because of risk of getting infection Either to have no pain or die Believing that nobody is ready to die at a young age Life is either happy or suffering Believing that nobody can tell how long one can live Believing that nobody can understand the suffering ‘Should’ thinking Believing that suffering is due to action of past life One should take care of oneself rather than depending on others Believing that what other people says of retribution is true One should take care of the family rather than the other way round Believing that one has to answer to God after death One should study, work, get married, bear children before dying Believing that there is no reason to live if recovery is not possible One should do many things in life before dying Believing that it is impossible not to

Hope and the Struggles with

Hope Hope not The struggles with acceptance Hoping for cure Not wanting the disease Not accepting the disease Hoping for life prolongation Not wanting to have cancer Not accepting the terminality of the disease Hoping to live one day at a time Not wanting to suffer Not accepting pain Hoping for physical independence Not wanting to suffer anymore Not accepting the dependence on others Hoping to be able to take care of oneself Not wanting to depend on others Not accepting but no choice Hoping to be able to walk around freely Not wanting to be disturbed Finding it hard to accept the prognosis Hoping for quality of life Not wanting family to get sick from caring Feeling unprepared to die Hoping for a normal life Not wanting family to suffer together Completely unprepared to die Hoping to do many normal things in life Not wanting tubes and lines Not scared of dying but not ready to die Hoping to try many things in life Not wanting to lie on hospital bed Not believing the told prognosis Hoping to see more people Not wanting to take medications Arguing with the doctor for disparaging Hoping to see the world more Not wanting to wait in the clinic one’s experience of suffering Hoping that family won’t feel so sad Not wanting to be treated like experiment Complaining about lack of communication Hoping to face dying later Not wanting to eat hospital food Complaining about lack of Hoping for hastening of death Not wanting to die with pain Complaining about lack of care continuity Hoping for death if burdening others Not wanting to die by losing bit by bit Not satisfied with slow nursing service Wanting to do many things but breathless Having to depend on others Not satisfied with hospital food Wanting to have own family before dying Having to go through side effects of chemo Asking family to go home to rest Wanting to know the entire picture Having to wake up because of pain Wanting to see the same doctor Having to walk slowly because of the pain Wanting empathy from the doctor Having difficulty in passing time Intending to die if not improving Not able to do anything about the pain Intending to die if suffering Not able to forget that one is sick Bargaining to live longer Not able to sit still for minutes Bargaining to live one extra day at a time Not able to walk for ten minutes Bargaining to delay death Expecting a cure but not possible Expecting life prolongation with quality Preferring to die if suffering Having no hope for recovery

Emotions

Feeling shocked with the diagnosis Fear of suffering but not dying Feeling sorry to see family having stress Feeling shocked with the prognosis Feeling fearful knowing what is cancer Feeling sad when diagnosed with cancer Feeling frustrated with the disease Feeling scared about many things Feeling sad because of incurability Feeling angry and unfair Feeling scared to answer God Feeling sad for the family Feeling bored with nothing to do Feeling scared not knowing the prognosis Feeling sad when thinking about dying Fear of no carer Feeling anxious Feeling depressed Fear of burdening others Feeling hopeless Feeling devastated to see family Fear of getting infection from friends Feeling lonely Feeling terrible because of pain Fear of needles Feeling lonely in the experiencing of pain Feeling useless Fear of dying Feeling lonely not knowing where God is Fear of suffering Feeling unhappy connected to lines

Clinging

Ruminating Worrying Wondering Ruminating about the disease Worrying about the future of oneself Wondering why there is no forewarning Ruminating about the pain Worrying about losing the ability to walk Wondering why this is happening Ruminating about the changes Worrying about coping Wondering how it is possible Ruminating about troubling family Worrying about depending on others Wondering why me Ruminating about the impact on children Worrying about the future of family Wondering what one has done wrong Ruminating about dying Worrying about the well-being of family Wondering what to do if one cannot walk Ruminating about dying all the time Worrying about small children Wondering how long one has to suffer Ruminating about not wanting to die Worrying about the risk of getting infection Wondering where God is while in pain Ruminating about not the right time to die Not knowing how to describe suffering Ruminating about unfairness of life Not knowing what to do Chain of fearful thoughts Not knowing what one is doing Chain of worrying thoughts Not knowing who to turn to Not knowing how long one can live