**8. A good death**

Caregiver of a patient who is nearing his death may feel a heightened need for reconciliation, affirmation, forgiveness and acceptance. It is important to note that *death is the not the ultimate failure*, poor quality of death and a demoralizing death is the real failure. Patient dying in a hostile environment of ICU, away from the physical and emotional support of the loved ones, is demoralizing to the family. Collusion prevents the spiritual nourishment between patient and caregiver, leading to a poor quality of death and distress in the bereavement period. *How can one achieve a 'good death'?* Taking care of physical issues like pain and dyspnoea at end of life of the cancer patient can be of great help. Patient and caregivers should have had adequate time and support to be able to accept death as a real eventuality and say a healthy 'good bye'. They should have had time to express love for each other. There should be openness to accept failures of life, forgive others and each other, reconcile with other family members. The achievements in life as an individual and as a family unit should be reviewed and acknowledged together. Lastly, the life journey as a whole may be evaluated and discussed among the family.

#### **9. Recent literature on cancer caregiver distress**

There are studies evaluating prevalence of distress in caregivers of cancer patients and its associated factors. In a study conducted on 641 Chinese adult cancer patients and their caregivers, it was found that *one-third* caregivers had experienced anxiety and depression and with similar degree. The factors that were found to affect the anxiety and depression in patient-caregiver dyads were- marital status, age, gender, level of information about disease, type of cancer and treatment, being the spouse, duration in role as caregiver, time spent daily on care giving, pre- and post-cancer family relationship and financial burden due to cancer treatment [21]. These factors associated with the caregiver distress may affect it with varying degree of severity. A review article published in 2018 found that caregiver distress was related to psycho-physiological elements like blood pressure and poor health related behaviors. Problem focused coping reduced depression and improved adjustment in this study [22].

Caring for children with cancer also leads to caregiver distress and burden. There may be some association between the child's symptoms and caregiver's distress. At the time of diagnosis, the parent of child may feel grief and severe anxiety. A study on psychological adjustment in families of 159 children with cancer found that during the first year of diagnosis the caregivers have clinically significant distress but the children are well adjusted [23]. Caregivers of 100 acute lymphoblastic leukemia children in Hydrabad (India) were enrolled in a study, which showed, that both mothers and fathers did not experience significantly different burden, however they used different coping strategies for the distress they felt [24]. Study published

**95**

*Caregiver Distress in Cancer*

covariate [32].

witnessing suffering [13].

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

in 2016 concluded that symptoms of children being treated for cancer and financial

In a randomized controlled trial published in Oncologist in 2017, 350 patients and their caregivers were randomized to either early integrated palliative care or regular oncological care. This intervention improved the total distress and depression scores, but no change in anxiety score were noted [26]. It has been frequently reported that psychological distress is substantially high in a nuclear family, so family based approach is needed and most effective in cancer care. The caregiverpatient dyad unit should be the focus of assessment and intervention [27]. In a study on 43 lung cancer patient and caregiver dyads, it was found that patient's Lung Cancer Symptom Scale scores correlated positively with caregiver distress and burden scores [28]. Another study on 91 lung cancer patients and caregiver dyads found that the burden, anxiety, depression, Quality of life of the caregivers was affected by the Quality of life of the patient and not their stage of disease [29]. A study aimed to assess the inter-relationship of patient and caregiver distress at the time of diagnosis of incurable cancer. They enrolled 350 patients and 275 family caregivers within 8 weeks of diagnosis of incurable cancer. They found that patients reported more depression and caregivers more anxiety [30]. The anxiety and depression were found to be interrelated in the patient and their caregiver with good correlation. A review article published in 2016 on caregivers of ovarian cancer patients found that with time the experience of the caregiver changes. During the first year of diagnosis of cancer there is minimal compromise in well being and Quality of life, however there is steady decline as the disease progresses [31]. In pediatric cancer patients health related quality of life of the children has been significantly related to the caregiver distress, with age of the child being a significant

There has been limited research on caregivers of head and neck cancer patients. This study interviewed 31 long term caregivers of head and neck cancer patients. Emotional distress was found related to – understanding of illness, fears, restrictions in lifestyle, change in body image, financial burden, co-morbidities and

A study looked at the bereavement outcome in relation to age of advanced cancer patients [33]. They interviewed caregivers of 199 advanced cancer patients at the time of diagnosis and shortly following death of the patient. They concluded that relatives of patients in middle age (40–59 years) had greater grief and related distress symptoms like depression during bereavement period. In contrast, the relatives of young-old patients (60–79 years) had greater distress during caring

An Indian study [34] explored the association between distress and somatization in 100 cancer patients and their caregivers. They found that the depression and anxiety found in patient and their caregiver had significant correlation; the caregiver's distress significantly correlated with somatization in the patient. Thus, psychological evaluation and management of the caregiver distress is essential for well being of the cancer patient. A study looked at gender differences in 377 cancer caregivers in Albania and found that female caregiver had higher levels of distress and poorer quality of life as compared to male caregivers [35]. An interventional study randomized 65 patient-caregiver dyads to group intervention and 66 to usual care, the interventional group had better Spiritual well-being scores, caregiver

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].

period and relief of distress during the bereavement period.

Quality of life scores at short and long term [36].

difficulty were significantly associated caregiver distress and burden [25].

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

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

therapy and problem solving therapy.

**8. A good death**

the diagnosis or the prognosis. The caregiver, the patient and the medical team are bound to face conflict at multiple points of time in the management of cancer of this patient. Addressing the issues around collusion in this case will reduce distress in the caregiver. It is important to make an effort to improve communication between patient, caregiver and the medical team. The practical family issues and social issues like taboo and isolation need to be addressed to improve distress. There are formal approaches to manage adjustment disorders like- cognitive behavior

Caregiver of a patient who is nearing his death may feel a heightened need for reconciliation, affirmation, forgiveness and acceptance. It is important to note that *death is the not the ultimate failure*, poor quality of death and a demoralizing death is the real failure. Patient dying in a hostile environment of ICU, away from the physical and emotional support of the loved ones, is demoralizing to the family. Collusion prevents the spiritual nourishment between patient and caregiver, leading to a poor quality of death and distress in the bereavement period. *How can one achieve a 'good death'?* Taking care of physical issues like pain and dyspnoea at end of life of the cancer patient can be of great help. Patient and caregivers should have had adequate time and support to be able to accept death as a real eventuality and say a healthy 'good bye'. They should have had time to express love for each other. There should be openness to accept failures of life, forgive others and each other, reconcile with other family members. The achievements in life as an individual and as a family unit should be reviewed and acknowledged together. Lastly, the life

journey as a whole may be evaluated and discussed among the family.

There are studies evaluating prevalence of distress in caregivers of cancer patients and its associated factors. In a study conducted on 641 Chinese adult cancer patients and their caregivers, it was found that *one-third* caregivers had experienced anxiety and depression and with similar degree. The factors that were found to affect the anxiety and depression in patient-caregiver dyads were- marital status, age, gender, level of information about disease, type of cancer and treatment, being the spouse, duration in role as caregiver, time spent daily on care giving, pre- and post-cancer family relationship and financial burden due to cancer treatment [21]. These factors associated with the caregiver distress may affect it with varying degree of severity. A review article published in 2018 found that caregiver distress was related to psycho-physiological elements like blood pressure and poor health related behaviors. Problem focused coping reduced depression and improved

Caring for children with cancer also leads to caregiver distress and burden. There may be some association between the child's symptoms and caregiver's distress. At the time of diagnosis, the parent of child may feel grief and severe anxiety. A study on psychological adjustment in families of 159 children with cancer found that during the first year of diagnosis the caregivers have clinically significant distress but the children are well adjusted [23]. Caregivers of 100 acute lymphoblastic leukemia children in Hydrabad (India) were enrolled in a study, which showed, that both mothers and fathers did not experience significantly different burden, however they used different coping strategies for the distress they felt [24]. Study published

**9. Recent literature on cancer caregiver distress**

**94**

adjustment in this study [22].

in 2016 concluded that symptoms of children being treated for cancer and financial difficulty were significantly associated caregiver distress and burden [25].

In a randomized controlled trial published in Oncologist in 2017, 350 patients and their caregivers were randomized to either early integrated palliative care or regular oncological care. This intervention improved the total distress and depression scores, but no change in anxiety score were noted [26]. It has been frequently reported that psychological distress is substantially high in a nuclear family, so family based approach is needed and most effective in cancer care. The caregiverpatient dyad unit should be the focus of assessment and intervention [27]. In a study on 43 lung cancer patient and caregiver dyads, it was found that patient's Lung Cancer Symptom Scale scores correlated positively with caregiver distress and burden scores [28]. Another study on 91 lung cancer patients and caregiver dyads found that the burden, anxiety, depression, Quality of life of the caregivers was affected by the Quality of life of the patient and not their stage of disease [29].

A study aimed to assess the inter-relationship of patient and caregiver distress at the time of diagnosis of incurable cancer. They enrolled 350 patients and 275 family caregivers within 8 weeks of diagnosis of incurable cancer. They found that patients reported more depression and caregivers more anxiety [30]. The anxiety and depression were found to be interrelated in the patient and their caregiver with good correlation. A review article published in 2016 on caregivers of ovarian cancer patients found that with time the experience of the caregiver changes. During the first year of diagnosis of cancer there is minimal compromise in well being and Quality of life, however there is steady decline as the disease progresses [31]. In pediatric cancer patients health related quality of life of the children has been significantly related to the caregiver distress, with age of the child being a significant covariate [32].

There has been limited research on caregivers of head and neck cancer patients. This study interviewed 31 long term caregivers of head and neck cancer patients. Emotional distress was found related to – understanding of illness, fears, restrictions in lifestyle, change in body image, financial burden, co-morbidities and witnessing suffering [13].

A study looked at the bereavement outcome in relation to age of advanced cancer patients [33]. They interviewed caregivers of 199 advanced cancer patients at the time of diagnosis and shortly following death of the patient. They concluded that relatives of patients in middle age (40–59 years) had greater grief and related distress symptoms like depression during bereavement period. In contrast, the relatives of young-old patients (60–79 years) had greater distress during caring period and relief of distress during the bereavement period.

An Indian study [34] explored the association between distress and somatization in 100 cancer patients and their caregivers. They found that the depression and anxiety found in patient and their caregiver had significant correlation; the caregiver's distress significantly correlated with somatization in the patient. Thus, psychological evaluation and management of the caregiver distress is essential for well being of the cancer patient. A study looked at gender differences in 377 cancer caregivers in Albania and found that female caregiver had higher levels of distress and poorer quality of life as compared to male caregivers [35]. An interventional study randomized 65 patient-caregiver dyads to group intervention and 66 to usual care, the interventional group had better Spiritual well-being scores, caregiver Quality of life scores at short and long term [36].

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].
