**6. Spiritual factors affecting caregiver distress**

Spirituality is about valuing the non-material aspects of life, it is also concerned intimately with day to day reality. "Spirituality can be defined as *awareness of the transcendent*, the awareness of something beyond ordinary human knowledge or experience" [9]. It concerns with the whole life. The *4S model* of a human being involves- the 'soma' (physical), social, psychological dimensions; embraced and enhanced by the spiritual dimension. Relationship with the ultimate reality, meaning of life, purpose of living, deeper meaning behind experiences and harmony with other beings and the universe are some aspects spiritually is concerned with. Religion is a shared system of beliefs and certain rituals. One's spirituality may be either independent or dependent on their religious believes. Whether one calls it spirituality or soul or '*atma*' or the spirit, it is about exploring and discovering the meaning or purpose of one's identity and life.

Dealing with major life-stressors, like diagnosis and treatment of cancer, has been shown to trigger post-traumatic growth in the patients and their caregivers. There may be an altered perspective on what really matters in life, what is the

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*Caregiver Distress in Cancer*

'*karma*'.

nightmares.

**7. How can one help**

*DOI: http://dx.doi.org/10.5772/intechopen.96386*

in patients and their families [11, 12].

on if it's going to be like this?'

from God and talk to Him the same way."

the spiritual health or *qualify of spiritual health*.

meaning behind life [10]. The higher domains like life appreciation, relating to other's problems, empathy, compassion and spiritual matters are seen to be affected

• *Guilt or Shame* Person feels they are reaping the results of their past actions. They are being punished for their ill actions by suffering like this. They feel that they deserve this misery and do not deserve any better. The concept of

• *Intense suffering* Receiving bad news, long periods of caring for a cancer patient can lead to isolation, loneliness and vulnerability. This intense suffering may

• *Sense of –lessness* Caregivers may develop feelings of helplessness, hopelessness and meaninglessness. Some people are able to cope with this, but others may become withdrawn and depressed. They may feel - 'What's the point of going

• *Breaking up with God* Some may question God and other religious authorities- "Why us, what did we do to deserve this?" and feel angry. Others may just break their ties with God and the religious believes they had been following till now. For some, their relationship with God may change- "Now I can't ask for help

• *Premature stoicism* Stoicism is defined as- "the endurance of pain or hardship without the display of feelings and without complaint." In Indian culture, the family members and loved ones feel this overpowering need to take care of their cancer patient. The caregiver often feels that he or she cannot let down their patient and thus feel they have to do it all. They also endure suffering, without complaining, as part of this duty towards the family member.

• *Nightmares* Each one of us may have had that vivid dream about falling endlessly or being stuck in a box and unable to get out, at some point of time in our lives. Cancer caregivers, if asked, share that they frequently get these

Thus, the interplay of elements like experiences, values, beliefs, relationships, assumptions, motivation, dreams, aspirations, thoughts and emotions determines

Medical professionals and health team may be able to reduce caregiver distress related to cancer if it is identified early and adequate steps are taken to relieve the causes of distress. Also, they can work with caregivers to help them attain something of emotional significance from the experience of loss or suffering [13]. Cancer patient caregivers will benefit from improving their *coping skills* and learning more adaptive coping skills (**Table 3**). They need to preserve their emotional balance, sense of know-how, sustain social relationships and above all, be prepared for the uncertain future. Expression of emotions to social support system is shown to improve optimism and reduce distress in cancer patients [14–16]. Similar strategies

The following are some of the spiritual needs of a caregiver-

overwhelm the caregiver into feelings of suicide.

#### *Caregiver Distress in Cancer DOI: http://dx.doi.org/10.5772/intechopen.96386*

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

to family members during bereavement period too.

**6. Spiritual factors affecting caregiver distress**

meaning or purpose of one's identity and life.

Spirituality is about valuing the non-material aspects of life, it is also concerned intimately with day to day reality. "Spirituality can be defined as *awareness of the transcendent*, the awareness of something beyond ordinary human knowledge or experience" [9]. It concerns with the whole life. The *4S model* of a human being involves- the 'soma' (physical), social, psychological dimensions; embraced and enhanced by the spiritual dimension. Relationship with the ultimate reality, meaning of life, purpose of living, deeper meaning behind experiences and harmony with other beings and the universe are some aspects spiritually is concerned with. Religion is a shared system of beliefs and certain rituals. One's spirituality may be either independent or dependent on their religious believes. Whether one calls it spirituality or soul or '*atma*' or the spirit, it is about exploring and discovering the

Dealing with major life-stressors, like diagnosis and treatment of cancer, has been shown to trigger post-traumatic growth in the patients and their caregivers. There may be an altered perspective on what really matters in life, what is the

the caregiver. In a country like India, the caregiver, usually a close family member is the first to receive the news of diagnosis of cancer; even before the patient. During this early period of breaking bad news and details of disease related prognosis, the caregiver goes through psychological problems like- acute stress disorder. Usually, the person may go through phases of disbelief, fear, anxiety, in-ability to sleep, blame, anger and intrusive thinking etc. Now, their lifestyle may never remain the same. They go from the routine activities to a whirlwind of hospital appointments, tests, investigations and consultation with multiple doctors. Consolidating all the information shared with them regarding the disease and treatment during these consultations and then, the mammoth responsibility of taking the right decisions can be quite daunting. The caregivers could quickly move from acute stress to more chronic post-traumatic stress disorder [6–8]. During the stage of active treatment of cancer the caregiver may experience exhaustion, helplessness and disruption of social roles. As the treatment ends and follow up period starts, there may be fears of disease recurrence, long-term treatment side effects, higher vulnerability and sudden isolation. In India, another important factor to consider is feeling of *taboo*. Generally, people fear that if the society comes to know that their family member has cancer, the family will be socially isolated, to the extent that they may be considered bad luck to be around. The constant effort to keep the secret of cancer in the family is a cause of distress. *Collusion* is another important consideration in context of India. The primary caregiver keeps the knowledge of diagnosis or the knowledge of disease prognosis to themselves. They hardly allow the medical team to disclose cancer diagnosis to the patient in order to protect their loved one from mental trauma and resulting distress. But this *conspiracy of silence* between the caregiver and the medical team is a source of constant psychological distress in the patient, as well as the caregiver. The psychodynamics of the family is any way disturbed by the diagnosis of cancer in a family member. Adding on that, the pressure of hiding diagnosis from the patient, all while struggling through diagnostic tests and treatment of cancer will generate stress and tension for the caregivers. Collusion also blocks honest discussions among the family members and preparation for parting. Caregivers may have mixed states and degrees of depression, anxiety, psychological distress; they may find it difficulty in falling asleep or staying asleep. All these affect their quality of life. Collusion, if not resolved is a source of immense distress

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meaning behind life [10]. The higher domains like life appreciation, relating to other's problems, empathy, compassion and spiritual matters are seen to be affected in patients and their families [11, 12].

The following are some of the spiritual needs of a caregiver-


Thus, the interplay of elements like experiences, values, beliefs, relationships, assumptions, motivation, dreams, aspirations, thoughts and emotions determines the spiritual health or *qualify of spiritual health*.
