Caregiver Evaluation in Hospice

Introduction

Terminal disease is a condition that includes patients and their caregiver. When a patient is admitted in hospice, in most cases, his or her family has created a system where there is a relative (caregiver) who is the most responsible for his or her care.^1,2 It is important that the caregiver can still rely on other family members, because his or her health and well-being depend on this relationship, also after the death of the patient. ³ Caregivers, who perceive difficulties in caring for the patient, have a higher risk of distress ⁴ and experience psychological problems, during the mourning process. ³

Caregivers with health problems of varying severity, usually, have needs that are not met, and report that their physical health has suffered since they took the role of caregiver. ⁵ The assistance that the caregiver offers to the patient is significantly correlated with lifestyle change, which in turn is correlated with emotional distress.^6,7 Caregiver’s emotions mainly consist of a sense of impotence, anger, sadness, oppression, frustration, fear, guilt for not dedicating enough time to patient’s care, and remorse for accepting commitments that distract them from the care.^8,9

A major difficulty for caregivers in hospice is linked to the patient−caregiver nondialogue about the disease, which the caregiver performs thinking to “protect” the patient from the truth. ¹⁰ In our previous research, indeed, it was shown that, in many cases, caregivers did not want to reveal to the patient the nature of his or her disease and the advanced stage of disease, especially in the case of older patients. ¹⁰ This happened even if in literature it is reported that the information provided to patients about their disease may be beneficial in establishing relationships and satisfactory communication between patients, families, and staff. ¹¹

Depression, anxiety, stress, and panic disorders are really due to emotional burden perceived by caregiver,^12,13 which tends to increase as the functional status of the patient declines.^13,14 Functional coping strategies protect the caregiver from exhaustion of their internal resources. These strategies consist in keeping periods of time free for themselves, accepting patient's illness evolution, ¹⁵ having faith, keeping some daily occupations, assuming a positive attitude, ¹⁶ maintaining a sense of humor and talking with their family and friends. ¹⁷ As it is shown in several studies, moreover, it is important that caregivers are involved, valued, and educated by the hospice team on care tasks.^13,18,19

Grbich and colleagues report that the awareness of the relational transience leads the caregiver to perceive patient’s caring as an unique and precious time. The authors, moreover, observe an excessive physical and mental exhaustion in caregiver, frequent sleep disturbances, insecurity in death coping, concern about the future, feelings of sadness for the loss of his or her relative. ²⁰ Later, during the mourning, having witnessed their loved one was remembered with pride, despite all difficulties. ²⁰

The predictors variables for the development of caregiver’s pathological mourning are the following: old age, female gender, being husband or wife, loss of a young member of the family, lack of self-efficacy, poor adherence to a religious believe, lack of a social support, adverse life events and previous experience of suffering, thoughts with depressive content, short time between diagnosis and death, disease severity, and perception of heavy care burden.^21,22

Based on data from literature and our clinical experience, in the present study we studied caregiver’s distress at Rimini Hospice, through the use of a semi-structured interview, which allowed the caregivers to express themselves on survey areas.

Objective

The aim of this study was to assess the caregiver’s distress in Hospice, in order to understand its complexity, critical points, and resources, for taking charge of caregiver by the hospice team.

We made several researches on caregiver psychological distress^1–22 and found out that in the literature the majority of the studies did not have a validated instrument in Italian language, specifically for the caregiver assessment in hospice. For this reason, we decided to develop an instrument for a preliminary study, taking into account the elements of clinical practice that were found by the team of Rimini Hospice.

A semi-structured interview was built starting from these data, allowing the assessment of which thematic areas of the care and psychological burden the caregiver distress was more concentrated in. The distress, in particular, was monitored through the individuation of the nonverbal aspects of the speech.

Materials and Methods

The Sample

We interviewed 27 caregivers of patients admitted in Rimini Hospice. Two caregivers were excluded from the analysis of the interview results, because of interruption of the interview (due to crying of the participant) in one case and very low level of voice in another case. A total of 25 interviews were then analyzed.

In all, 76% of the sample was females, and 24% males (Table 1). The average age of the sample was 57.6 ± 15.2 years (range 30-81). As concerning caregiver role, 44% were wives, 28% sons, 16% husbands, 4% daughters-in-law, 4% brothers/sisters, and 4% partners. As concerning caregiver education, 40% had a primary education, 32% had degree of junior high school, 20% of high school, 4% had an university degree, and 4% did not have any school title. In all, 36% of the caregivers interrupted their work to take care of their relative, 28% were housewives, 20% were retired, and 16% kept their work.

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Table 1.

Characteristics of the Sample

n = 25
Age
Mean ± SD	57.6 ± 15.2
Range	32-81
Gender
Male	24%
Female	76%
Caregiver role
Wife	44%
Husband	16%
Son	28%
Brother/sister	4%
Daughter-in-law	4%
Partners	4%

The Interview

A clinical psychologist, with experience in palliative care, administered the semi-structured interview, which assessed 5 factors concerning the care burden, and 5 concerning the psychological burden. The interview had some illustrative questions (for each factor), which the psychologist might change according to the specific situation and the social and cultural level of the participant.

The interview is divided in 2 principal areas, assessing care and psychological burden of the caregiver (Table 2). The care area included the following subareas: general information, change of life rhythm, social network, body care, and home care. The general information subarea assessed objectively the amount of time that the caregiver had to assist the patient and how he or she organized this time. The change of life rhythm subarea assessed how caregiver life rhythm changed and whether he or she was able to maintain personal spaces. The social network subarea verified whether an appropriate social network could assist the patient and whether the caregiver wanted it. The body care subarea monitored the psychological aspects resulting from patient’s body care performed by the caregiver. The home care subarea investigated caregiver availability as concerning patient’s home care.

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Table 2.

Domain of Care and Psychological Area of the Interview

Care Area	Psychological Area
General information	Family dynamics
Change of life rhythm	Caregiver’s awareness
Social network	Caregiver’s role
Body care	Coping strategies
Home care	Death representation

The psychological area included the following subareas: caregiver–patient relationship and family dynamics, caregiver’s awareness, caregiver’s role, coping strategies, and death representation. The caregiver–patient relationship and family dynamics subarea analyzed caregiver–patient relationship before and after the disease onset and any change in family dynamics. The caregiver’s awareness on patient’s disease subarea verified whether the caregiver was informed of patient’s disease progress (prognosis). The caregiver’s role subarea verified how the caregiver feels as concerning his or her role and to inform the patient about his or her prognosis. The coping strategies subarea assessed the type of strategies used by the caregiver to cope with the painful situation. The death representation subarea verified whether the caregiver could represent patient’s death and his or her own life afterward.

The Coding System of the Interview

The interview verbatim transcription were analyzed with Atlas.ti software, which allowed to make a transversal comparison among the different interviews, through several operative functions. The software allowed to assign a name (code) to parts of the text (quotations) that the researcher believed were important for the object of the study.^23,24 All the codes were then subdivied by Atlas.ti into 11 families, 10 of which corresponded to subareas of the interview and 1 to the nonverbal aspects of the speech, indicating distress (Table 3).

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Table 3.

Nonverbal Aspect of the Speech Which Indicates Distress That Emerged From the Interview and Were Coded in Atlas.ti software

Nonverbal aspect of the speech
Lowering the tone of voice
Lower volume of voice
Higher volume of voice
Particularly fast pace of voice
Faster pace of voice
Slower pace of voice
Very slow pace of voice
Crying
Talking while crying
Error of the word
Repetition of words
Babble
Laugh as emotional distance
Sigh
Panting
Hesitation
Full pause
Pause 2 seconds
Pause 3 seconds
Pause 4 seconds
Pause 10 seconds
Pause 20 seconds

Every nonverbal aspect of the speech, except the pace of the speech (which was analyzed separately), was identified from the listening of the interview and their verification through a graphic interface software. For the assessment of the pace of the speech, all the interviews were listened for a second time, discarding the psychologist parts, and obtaining in this way the exact speech duration of each interviewed caregiver. The obtained caregiver speech was then entirely broken down into syllables, in order to obtain more precise measurement unit: syllable/second. We, subsequently, obtained 2 intervals, representing 2 opposite situations: caregiver who had a slow (2.03< × <2.16 syllable/second) or a fast pace of speech (3.50< × <4.24 syllable/second).

Co-occurrence operations were then carried out between families of codes by Atlas.ti software. The software looked for the partial or total overlap of citations (quotations) of nonverbal aspects of speech family codes with each family code ²⁴ of care and psychological caregiver burden subarea.

Results

Distress Distribution in the Interview Care Area

The part of the interview assessing caregiver’s life rhythm changes was the most loaded of nonverbal aspects of speech indicating distress (38%; Table 4). Twenty-six percent of distress relied on the social network subarea. Since this result appeared not very clear, the social network family code was further divided into 3 subfamily codes: “present and supportive family network,” “present and supportive nonfamily network,” “present but not supportive family and nonfamily network.” This division was also made in order to better understand which social network aspects were mostly inducing caregiver distresses.

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Table 4.

Distress Distribution in Care and Psychological Areas of the Interview

Care Area
General information	11%
Change of life rhythm	38%
Social network	26%
Body care	13%
Home care	12%

Psychological area
Family dynamics	11%
Caregiver's awareness	16%
Caregiver's role	51%
Coping strategies	9%
Death representation	13%

The results of this further analysis showed that the present and supportive family network was the most involved in nonverbal aspects of speech indicating distress (15%), whereas present and supportive nonfamily network and present but not supportive family and nonfamily network families showed 4% and 7% of distress, respectively. The following values of distress were found in the subareas of care area: 11% in general information, 13% in body care, and 12% in home care.

Discussion

This study allowed the caregiver assessment in hospice, and understanding, which was the single interview domain, where the distress was mainly accumulated. The individuation of these domains was important for a global caregiver taking charge by the care team. As concerning the care point of view, caregiver distress was mainly concentrated in the change of life rhythm subarea, as confirmed by the literature.^6,7 The most frequent interview codes of this subarea, in particular, were the constant thought to patient’s disease and having few personal spaces.

As concerning sleep disturbance of caregiver, the frequencies of the codes were equally distributed between difficulties in falling asleep, and no significant change in sleep pattern.

The presence of a high percentage of distress in the social network subarea seemed a nonunderstandable result, because it should be a support for the caregiver and not a further aggravation of care burden. The subsequent division of the social network family code into 3 subfamily codes has allowed to better understand the factors inside the social network that were mostly causing distress. Present and supportive family network resulted in the major cause of distress for 2 main reasons. First, some caregiver feared to be themselves a burden for the other relatives involved in the patient’s care. This was concerning especially patient’s wives who did not want to be a burden to their sons/daughters, and for this reason tried to do everything on their own and thereby asking only little help to the remaining family members . Second, some caregiver reported cases of loneliness because of conflicts with the other family members that were involved in patient’s care.

Present and supportive nonfamily network, such as support of sanitary personnel, care worker, and so on, represented a practical support for caregivers and did not seem to be a source of distress. The analysis of present but not supportive family and nonfamily network code showed 2 opposite situations. On one side, some caregiver who wanted someone’s help did not get any support from their social network. On the other side, some caregiver preferred to attend personally to patient’s care, notwithstanding they had a supportive social network ready for help.

As concerning the interview psychological area, distress was mostly distributed in caregiver’s role, in particular, on caregiver’s thoughts/emotions subarea, as reported by other studies.^12,13 The most frequent codes of the thoughts/emotions subarea were the following: satisfaction in patient’s care and a sense of helplessness and anguish for disease evolution. As concerning caregiver attitudes/behaviors toward their relative patient, the most frequent codes were referred to provide a protection feeling sense to the patient, to be careful toward him or her, to interpret the silence of the patient at the expense of dialogue, and to hold the patient's anger.

As concerning caregivers role in managing medical information, the most frequent code regarded the patient−caregiver nondialogue about the disease, as confirmed by the literature. ¹⁰ From the analysis of code quotations, it emerged that the majority of caregivers outlined in detail their decision on whether to inform or not the patient about his or her diagnosis and/or prognosis of disease; and only few caregiver made efforts to hide this information from the patient.

The results of our study can be improved by assessing the distress in a larger sample of caregiver in hospice and repeating the research in hospices from different geographical areas with different social and cultural habits, and quantitatively evaluating the impact of caregivers distress according to their parental role.

Conclusion

The objective of this preliminary study was to understand in detail the areas of caregiver activity that mostly contribute to distress onset. The subareas that mostly influenced caregiver distress were the change of life rhythm and the caregiver’s role, in particular thoughts/emotions. An interesting element, which was found in our study, was the identification of social network as source of distress, especially in the specific aspects of the present and supportive family network. This result underlined the delicate role of caregiver, which frequently is the family fulcrum, and is worried about satisfying not only patient’s needs, but also those of the other family members.

As a consequence, it becomes important to take into account this result for caregiver taking charge by the care team. Psychological support in difficult choices, other figures’ help, the shifts in assistance, the maintenance of personal space and use the social network, where present, can improve the caregiver taking charge by the care team.

A future research prospective can be that of developing a specific questionnaire for caregiver’s evaluation in hospice, according to the contents emerged from the care and psychological areas of our semi-structured interview.