**2. Components of caregiver distress**

The common psychological distress problems would be- anxiety and anxiety disorders, low mood and depressive disorders and adjustment disorders (**Table 1**).

Whenever a person perceives threat, '*anxiety*' is the natural response. This response helps to enhance their actions in order to take care of the threat. When does this natural response of anxiety become a problem? Either the threat is out of person's capability to resolve, or the anxiety hampers with the person's ability to act appropriately in the situation. So, 'anxiety' may be seen as a spectrum between normal response to persistent to severe anxiety (**Figure 1**).

Some people experience anxiety in response to day to day stressors lifelong, for them anxiety due to caring for someone's cancer is just another symptom of their own chronic anxiety problem. This may be seen more as 'chronic anxiety'. On the other hand, some people may experience 'acute anxiety'. It is generally a temporary response to a particular stressor, for example, being delivered the news of metastatic and incurable cancer in the patient, or the news of recurrent cancer. In a caregiver, anxiety may be related to –


Some people may be suffering from anxiety disorders like- panic disorder, generalized anxiety disorder and mixed anxiety and depressive disorder. It is commonly seen that people with symptoms of anxiety usually have adjustment disorder or varying degrees of depression.


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*Caregiver Distress in Cancer*

**Figure 1.**

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

Caregivers suffer from low mood very often. '*Depression*' is a common occurrence in cancer patients, and is also common in their caregivers. There is a spectrum of mood disorders ranging from sadness to adjustment disorder to depression. Depression is not the same as feeling sad. The common features seen in depression are- inability to experience pleasure (anhedonia), helplessness, hopelessness, feelings of loss and a flattening of all feelings. They may feel irritable, worthless; there may be lack of interest in daily activities or recreational activities; suicidal ideation is important to look for. There may be physical features like lack of sleep, weight loss, fatigue, reduced energy level and lethargy. Depressive disorders are usually under diagnosed in caregivers. This results from lack of active screening, lack of focus on the caregiver, more focus on the cancer patient, social cover-up by the

*This figure shows the spectrum of caregiver's response to the perceived threat posed by cancer in their loved one.*

There will be many people with distress, who do not fall into the diagnostic criteria for depression or anxiety if the diagnostic criteria are applied strictly. These people may have '*adjustment disorders'*. The main components of adjustment disorders are- they occur in response to a stressor, they usually last for a short duration of time (acute in nature), there will be emotional turmoil and distress and finally this results in function impairment. The diagnosis of adjustment disorder is more of a clinical judgment. The main temporality to remember is that the distress should start within 1–3 months of the stressor and be relieved within 6 months of resolution of the stressor. It is important to acknowledge adjustment disorders if distress is recognized in the caregiver, because otherwise, they may be inappropriately

It has been seen in cancer patients, that regular and ongoing *evaluation* of psychological distress improves the management and treatment of psychiatric issues. This eventually contributes to better outcome, patient satisfaction, doctor-patient partnership, and improved overall care [1]. This is true even for caregiver distress. Regular screening and ongoing evaluation is as important aspect for good quality of

"a multifactorial unpleasant emotional experience of a psychological, social or

There are various tools and scales to screen for distress. Definitions for specific mental disorders are provided in Psychiatric Association's *Diagnostic and Statistical* 

caregiver and other simultaneous psychiatric problems like anxiety.

diagnosed to be depressed and prescribed unnecessary medications.

life in the patients and their caregivers. Distress is defined as

**3. Assessment of caregiver distress**

spiritual nature that interferes with coping."

**Table 1.** *Components of caregiver distress.*

#### **Figure 1.**

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

bereavement.

**2. Components of caregiver distress**

caregiver, anxiety may be related to –

and vomiting,

continuously,

or varying degrees of depression.

3 Adjustment disorders

*Components of caregiver distress.*

1 Anxiety and anxiety disorders 2 Low mood and depressive disorders

normal response to persistent to severe anxiety (**Figure 1**).

• fear of unknown like, prognosis of the patient,

degrees of emotional and psychosocial distress. There is ample literature on the palliative care needs of cancer patients. However, there is limited literature on the psychosocial needs of the relatives or caregivers of cancer patients. A significant proportion of caregivers have unmet needs for emotional support. They may have unaddressed fears regarding the patient's prognosis, disease related information and treatment details. Furthermore, caregivers of patients with advanced disease usually have distress symptoms like anxiety and depression. Caregivers face extreme demands right through the course of the cancer, survivorship and also during

The common psychological distress problems would be- anxiety and anxiety disorders, low mood and depressive disorders and adjustment disorders (**Table 1**). Whenever a person perceives threat, '*anxiety*' is the natural response. This response helps to enhance their actions in order to take care of the threat. When does this natural response of anxiety become a problem? Either the threat is out of person's capability to resolve, or the anxiety hampers with the person's ability to act appropriately in the situation. So, 'anxiety' may be seen as a spectrum between

Some people experience anxiety in response to day to day stressors lifelong, for them anxiety due to caring for someone's cancer is just another symptom of their own chronic anxiety problem. This may be seen more as 'chronic anxiety'. On the other hand, some people may experience 'acute anxiety'. It is generally a temporary response to a particular stressor, for example, being delivered the news of metastatic and incurable cancer in the patient, or the news of recurrent cancer. In a

• caring for a patient with uncontrolled symptoms like, pain or dyspnoea,

• lack of sleep, either due to distress, or caring for the patient at night

Some people may be suffering from anxiety disorders like- panic disorder, generalized anxiety disorder and mixed anxiety and depressive disorder. It is commonly seen that people with symptoms of anxiety usually have adjustment disorder

• fear of being left alone after the death of the patient, etc.

• anticipation of symptoms post treatment like, chemotherapy induced nausea

**86**

**Table 1.**

*This figure shows the spectrum of caregiver's response to the perceived threat posed by cancer in their loved one.*

Caregivers suffer from low mood very often. '*Depression*' is a common occurrence in cancer patients, and is also common in their caregivers. There is a spectrum of mood disorders ranging from sadness to adjustment disorder to depression. Depression is not the same as feeling sad. The common features seen in depression are- inability to experience pleasure (anhedonia), helplessness, hopelessness, feelings of loss and a flattening of all feelings. They may feel irritable, worthless; there may be lack of interest in daily activities or recreational activities; suicidal ideation is important to look for. There may be physical features like lack of sleep, weight loss, fatigue, reduced energy level and lethargy. Depressive disorders are usually under diagnosed in caregivers. This results from lack of active screening, lack of focus on the caregiver, more focus on the cancer patient, social cover-up by the caregiver and other simultaneous psychiatric problems like anxiety.

There will be many people with distress, who do not fall into the diagnostic criteria for depression or anxiety if the diagnostic criteria are applied strictly. These people may have '*adjustment disorders'*. The main components of adjustment disorders are- they occur in response to a stressor, they usually last for a short duration of time (acute in nature), there will be emotional turmoil and distress and finally this results in function impairment. The diagnosis of adjustment disorder is more of a clinical judgment. The main temporality to remember is that the distress should start within 1–3 months of the stressor and be relieved within 6 months of resolution of the stressor. It is important to acknowledge adjustment disorders if distress is recognized in the caregiver, because otherwise, they may be inappropriately diagnosed to be depressed and prescribed unnecessary medications.

## **3. Assessment of caregiver distress**

It has been seen in cancer patients, that regular and ongoing *evaluation* of psychological distress improves the management and treatment of psychiatric issues. This eventually contributes to better outcome, patient satisfaction, doctor-patient partnership, and improved overall care [1]. This is true even for caregiver distress. Regular screening and ongoing evaluation is as important aspect for good quality of life in the patients and their caregivers. Distress is defined as

"a multifactorial unpleasant emotional experience of a psychological, social or spiritual nature that interferes with coping."

There are various tools and scales to screen for distress. Definitions for specific mental disorders are provided in Psychiatric Association's *Diagnostic and Statistical*  *Manual* (DSM-5) [2]. A visual analog tool, the distress thermometer, is used as a self-report method to screen and measure distress. This tool has been validated against other tools used to screen for psychological distress [3]. *Distress thermometer* is an invaluable tool to screen for psychological distress. It has two components; one is a visual analogue scale ranging from 0 to 10. Zero being no distress and 10 being extreme distress. The second component asks the person to answer a series of yes or no questions pertaining to- practical problems, family problems, emotional problems, spiritual/religious problems and physical problems. This scale measures the global distress score, the list of problems are then used to identify areas that need focused care. The *Hospital Anxiety and Depression Scale* is self administered 14 question scale. This validated tool can be used to screen caregivers for anxiety and depression. A score from 0 to 21 is generated for both anxiety and depression, 0–7 indicates normal, 8–10 borderline and 11–21 abnormal score. People with abnormal score can then be reviewed in detail for anxiety and depression. Another tool useful for depression is *Beck Depression Inventory* (BDI). BDI is a self reporting, 21-item rating tool. It measures attitudes and the symptoms of depression. A shorter version with 13 items is called BDI-II. It has an internal consistency of 0.73 to 0.92. For anxiety, *Beck Anxiety Inventory* (BAI) tool can be used. It again consists of 21 items and is a self reporting rating questionnaire. Instrument *General Health Questionnaire* (GHQ-12) is a validated tool to assess the severity of any mental problem a person may have suffered from in the past few weeks. This instrument consists of 12 items, 4-point scale, with total score ranging from 0 to 36. A higher score indicates a worse mental problem. *Psycho-Oncology Screening* is a screening tool, specific for cancer. The screening is based on 5 to 10 minutes of standardized interview, which comprises of


To assess the third point, Psycho-Oncology Screening tool uses 6 items, rated from 0 to 4. Any patient with >9 points on this rating scale is considered distressed. Another validated, self administered tool is the *Psychological Distress Inventory*, used to measure distress in cancer patients. *Mental Health Quotient* is an online assessment tool. It captures the complete mental profile of an individual, ranging from "Clinical to Thriving". Another useful tool to screen for distress and unmet needs of a person is *Needs Evaluation Questionnaire* (NEQ ). It is again a self-administered tool, with 23 items with dichotomous answers. The *Kessler Psychological Distress Scale* (K 10) comprises of 10 items with scores ranging from 1 to 5 for each item (minimum possible score 10, maximum score 50). The grading is done as per following cut-offs

**89**

**Table 2.**

*Caregiver Distress in Cancer*

cancer patient.

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

**4. Physical factors affecting caregiver distress**

patient but their family members and caregivers.

**Symptom Frequency (%)** Pain 35–96 Anorexia 30–92 Fatigue 32–90 Delirium 6–93 Dyspnoea 10–70 Depression 3–77

**5. Psychosocial factors affecting caregiver distress**

*Prevalence of common symptoms in patients with advanced cancer. [4].*

Being diagnosed with cancer is a life-altering event in a patient's life. Nature of his/her response to diagnosis, treatment etc. will impact mood of the patient and quality of the social support. Managing strong emotional responses will affect patient's family and vocational exchanges. Similar points could be envisioned for

Patients with advanced cancer usually have multiple physical symptoms, with varying degrees of severity. In addition to this, the symptoms burden is dynamic, i.e., ever changing in severity and pattern, as the disease profile changes. The **Table 2** shows the prevalence of common physical symptoms in an advanced

The caregiver of an advanced cancer has to be able to care for above symptoms. Seeing your loved one in pain or with anorexia can be a source of distress, caring for someone with dyspnea can be quite scary and cause a lot of distress in the caregiver. Due to fatigue, patients with terminal cancer are unable to carry out recreational or occupation activities and even sometimes activities of daily living. Their caregiver, usually a family member, is equally affected emotionally by the changes in life style the patient may have to make to adapt to constant fatigue. In an Indian study, the researcher asked about the most bothersome symptoms reported by parents of dying children. Pain (85%) and respiratory distress (73%) were the commonest [5]. Much of the fear is due to past experiences of uncontrolled symptoms. This eventually leads to anticipatory psychological distress in both patients and their caregivers. In India, many complex factors like cost, scarcity of medical facilities in remote areas, taboo, etc., contribute to reduced expert medical care opportunities and hospice care. Advanced cancer patients with smelly fungating wounds, oro-cutaneous malignant fistulas, large bed sores, bowel and bladder dysfunction are being managed primarily at home by caregivers. The caregivers have the added responsibility of taking over the nursing role, usually full time. This may leave little or no time for personal needs, being a source of distress. Consider a patient who has a colostomy due to malignant bowel obstruction, this patient will have body image issues. He may become socially recluse, irritable, depressed and feel overall limited by the colostomy bag. Seeing him in psychological pain, the patient's caregiver and loved ones may find it distressing. So, change in body image of a patient whether due to a stoma, or amputation, or mastectomy not only affects the psyche of the


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

• questions related to socio-demographic characteristics,

• questions on the subjective experience associated with psychological distress in

To assess the third point, Psycho-Oncology Screening tool uses 6 items, rated from 0 to 4. Any patient with >9 points on this rating scale is considered distressed. Another validated, self administered tool is the *Psychological Distress Inventory*, used to measure distress in cancer patients. *Mental Health Quotient* is an online assessment tool. It captures the complete mental profile of an individual, ranging from "Clinical to Thriving". Another useful tool to screen for distress and unmet needs of a person is *Needs Evaluation Questionnaire* (NEQ ). It is again a self-administered tool, with 23 items with dichotomous answers. The *Kessler Psychological Distress Scale* (K 10) comprises of 10 items with scores ranging from 1 to 5 for each item (minimum possible score 10, maximum score 50). The grading is done as per

• questions related to medical characteristics, and

*Manual* (DSM-5) [2]. A visual analog tool, the distress thermometer, is used as a self-report method to screen and measure distress. This tool has been validated against other tools used to screen for psychological distress [3]. *Distress thermometer* is an invaluable tool to screen for psychological distress. It has two components; one is a visual analogue scale ranging from 0 to 10. Zero being no distress and 10 being extreme distress. The second component asks the person to answer a series of yes or no questions pertaining to- practical problems, family problems, emotional problems, spiritual/religious problems and physical problems. This scale measures the global distress score, the list of problems are then used to identify areas that need focused care. The *Hospital Anxiety and Depression Scale* is self administered 14 question scale. This validated tool can be used to screen caregivers for anxiety and depression. A score from 0 to 21 is generated for both anxiety and depression, 0–7 indicates normal, 8–10 borderline and 11–21 abnormal score. People with abnormal score can then be reviewed in detail for anxiety and depression. Another tool useful for depression is *Beck Depression Inventory* (BDI). BDI is a self reporting, 21-item rating tool. It measures attitudes and the symptoms of depression. A shorter version with 13 items is called BDI-II. It has an internal consistency of 0.73 to 0.92. For anxiety, *Beck Anxiety Inventory* (BAI) tool can be used. It again consists of 21 items and is a self reporting rating questionnaire. Instrument *General Health Questionnaire* (GHQ-12) is a validated tool to assess the severity of any mental problem a person may have suffered from in the past few weeks. This instrument consists of 12 items, 4-point scale, with total score ranging from 0 to 36. A higher score indicates a worse mental problem. *Psycho-Oncology Screening* is a screening tool, specific for cancer. The screening is based on 5 to 10 minutes of standardized

**88**

interview, which comprises of

the past 3 days

following cut-offs

• 10–19 Likely to be well

• 20–24 Likely to have a mild disorder

• 25–29 Likely to have a moderate disorder

• 30–50 Likely to have a severe disorder
