Psychosocial Issues Among Primary Caregivers of Patients with Advanced Head and Neck Cancer - A Mixed-method Study

INTRODUCTION

India has one-third of oral cancer cases in the world.^[1] About 80% of them have advanced disease at presentation^[2] with little scope for curative treatment and most are, therefore, left with the only option of supportive care. Palliative care penetration in India is only about 1–2%.^[3,4] The limited availability of palliative care shifts the paradigm of palliative care services from formal health-care professionals to the family members who are forced to don the role of caregivers.

A primary caregiver is the one who provides unpaid care at home and who has a pre-existing relationship (relative or friend) with the person for whom care is being provided. Primary caregivers are usually spouses, partners or adult children, who usually live with the cancer patient in the same premises. This informal home-based care poses many complex issues and challenges that affect the caregivers.^[5] It is of primary importance to examine those who bear much of the responsibility in caring for the cancer patient.^[6] It has been shown that caring for those at the end of their lives at home weighs heavily and impacts the well-being of family caregivers.^[7] Informal caregiving is associated with impaired physical well-being, emotional disruptions, uncertainty about the future, lifestyle interruptions, work-related changes and increased financial strain.^[8,9] The multifaceted distress experienced by the caregivers is conceptualised as caregiver burden or stress.^[10,11] Various factors such as age, gender, marital status, relationship and employment were found to be mediators of caregiver burden.^[12-14]

Palliative care is all about improving the QOL of not only patients but also their families. Since there are limited studies regarding caregivers of palliative care patients in our country, we decided to explore the psychosocial issues of caregivers with advanced cancer. Working in outpatient palliative care and seeing the struggle of the caregivers, especially in head-and-neck cancer, made us explore the psychosocial issues of caregivers of advanced head-and-neck cancer patients. The primary objective is to understand the caregiver’s experiences within the social context. Using a mixed method study, we aimed to:

1. To quantify the caregiver burden using Zarit Burden Interview (ZBI) schedule and quality of life in caregivers using caregiver quality of life index-cancer (CQOLC) scale

2. To qualitatively explore psychosocial issues faced by the caregivers of palliative care patients with advanced head-and-neck cancer.

3. Setting and participants

This research was carried out as part of the thesis for the Cardiff MSc (Palliative medicine) course and proceeded with approval from the institutional thesis review committee, between January 2016 and May 2016. Through purposive sampling, primary caregivers accompanying advanced head-and-neck cancer patients attending the palliative care outpatient clinic were included in the study. Recruitment of participants was done after they understood a detailed printed format stating the study purpose and obtaining the signed informed consent for participation. The confidentiality of the participants was ensured throughout.

MATERIALS AND METHODS

Both descriptive survey approach and a qualitative phenomenological approach were adopted for this study.

The quantitative data collection preceded the qualitative in-depth interview. A sociodemographic sheet was used to collect the personal details of the caregivers and the patient details such as diagnosis, duration of illness and treatment history. Caregiver burden was assessed using the ZBI and quality of life was assessed using the CQOLC.

1. Quantitative: Quantitative data were collected using standard validated tools –

   1. ZBI schedule,^[15] a self-reporting validated tool with translation available in the regional language (Tamil) was used to quantify the burden. This multidimensional tool was used to measure strain experienced by caregivers in four domains – social, physical, financial and emotional domains. Each question is scored on a 5-point Likert scale (never = 0, rarely = 1, sometimes = 2, quite frequently = 3 or nearly always = 4) where the caregivers are to indicate as to how often they have felt from ‘never’ to ‘nearly always.’ The scores are summated and interpreted as follows: 0–21: Little or no burden, 21–40: Mild-to-moderate burden, 41–60: Moderate-to-severe burden and 61–88: Severe burden

   2. CQOLC is a self-reporting instrument to assess the quality of life of cancer carers developed by Weitzner et al.^[16] with adequate validity (0.95) and internal consistency (Cronbach’s alpha 0.91). This is a 35-item self-administered questionnaire with each item having a score from 0 (not at all) to 4 (very much). The maximum score is 140, the higher the score better the QOL. There are subscales for burden, disruptiveness, positive adaptation and financial scales. These four factors include 27 items, with eight additional items not loading on to these factors.

2. Qualitative: Qualitative research was conducted fulfilling the COREQ criteria.^[17] Face-to-face interview of caregivers using a semi-structured questionnaire was carried out by a psycho-oncologist with experience. We chose a third person for the interviewing to avoid respondent bias as the researcher was also the treating palliative care physician. A trial interview preceded the formal interviews and helped structure the open-ended questions. The questions of the semi-structured interview in this study were mainly targeted to explore the psychosocial impact of caregiving on caregiver’s four main life domains: Physical, emotional, social and financial and to know whether the patient or the caregiver could find any meaning in their role of caregiving. The open-ended questions are given in [Table 1]. Besides, the interviewer was permitted to allow the conversation to stray away from the topic at her discretion as appropriate to maintain the flow help in capturing the responses. The interview was in the vernacular (Tamil) and audio recorded. The duration of each interview ranged from 30 min to 45 min. All the recorded data were appropriately labelled and handed over to the researcher for transcription, translation and analysis. The quantitative data were analysed using descriptive statistics and expressed as percentage, mean and standard deviation. Qualitative data analysis was done using thematic analysis as described by Braun and Clarke in 2006.^[18] Accordingly, all six steps were followed – familiarisation of data, generating the initial codes, searching for themes, reviewing the themes, defining and naming themes and producing the report. The extraction of themes, subthemes and the categories describing the phenomena were done manually using colour coding and derived according to their broader meaning of significance, thereby making it possible to interpret the essence of the entire qualitative data of this study in a schematic manner.

RESULTS

We recruited 18 caregivers but three were excluded due to incomplete data. We had 15 caregivers for quantitative analysis but used only 10 for qualitative as we had difficulty in retrieving the exact information from the voice recorder in the remaining five. The demographic details are given in [Table 2]. The duration of caregiving is displayed in [Figure 1]. ZBI scoring revealed that 46.7% of the caregivers experienced mild-to-moderate burden. The mean ZBI score was 32.4 ± 18.2. The mean CQOLC score was 73.07 ± 24.17 and the median CQOLC was 68 (range 34–109) [Figure 2 ]and [Figure 3].

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Figure 1:

Duration of caregiving.

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Figure 2:

Zarit Burden score of informal caregivers.

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Figure 3:

Caregiver quality of life index-cancer scoring of caregivers.

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Four major themes with several subthemes emerged on analysing the qualitative data, as depicted in [Figure 4].

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Figure 4:

Thematic derivation of psychosocial issues in advanced head-and-neck cancer caregivers.

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The major themes include:

1. Impacts of caregiving

2. Coping with caregiving

3. Caregiver’s appraisal of caregiving

4. Caregiver’s perception of illness.

DISCUSSION

The demographics of caregivers of head-and-neck cancer patients in our study were female spouses, with low literacy levels, while many of them were employed, their income levels were low. Almost all of these factors have been shown to predict increased levels of caregiver burden and a lower QOL in earlier studies.^[19-24]

Majority of the caregivers in this study had mild-to-moderate burden (46.7%) and a significant number experienced moderate-to-severe burden (26.6%). This increased level of burden could be attributable to the shift in roles, loss of a job and meeting the physical and psychological needs of the patient as can be made out from our qualitative interview. A study by Lukhmana et al. from Delhi reported that the majority of their caregivers (56.5%) had little or no burden.^[25] This contradiction in the two studies from the same country (India) using the same tool (ZBI) in their regional languages (Tamil and Hindi) could be attributed to the fact that all the patients in the present study were in their palliative phase while the cohort from Delhi was receiving active treatment and can also be due to difference in the sample size.

The median CQOLC score of our caregivers was 68. The low mean (73.07 [SD 24.17]) and median CQOLC score signify the overall reduction of QOL mostly due to physical impact, emotional distress and the financial hardships faced by the study sample. Another study from Delhi using CQOLC stated that caregivers with lower socioeconomic status in developing countries are at risk of lower QOL.^[26] Likewise, Nayak et al. in their study also found that caregivers of advanced cancer patients attributed financial burden to negatively influence their QOL,^[27] being a charitable cancer hospital, all our patients too were from lower socioeconomic group.

The findings of our qualitative interview have revealed that without formal health care and financial support systems informal caregivers are forced to bear the brunt of caregiving responsibilities. The major impact was on all the four domains – physical, emotional, financial and social influenced by the symptom burden and personal care needs of the care recipients. Similarly Brazil et al.^[28] in their qualitative study reported that care recipient symptoms and personal care needs were the primary stressors in the Canadian caregivers. Further they reported that the informal support received from their family, friends and neighbors to be moderators of caregiving stress.

Out of the four domains that emerged from qualitative analysis, two of them had financial factors affecting them both positively as perceived support for coping and a negative impact of caregiving when the loss of earning resulted in financial loss.

Despite the negative impacts of caregiving caregivers coped up with their situation using family support, active problem focussed coping strategies, positive appraisal of the situation by finding meaning and purpose in their caregiving in addition to filial responsibility.

In our study, caregivers employed both problems focussed and emotional focussed coping methods to overcome the stress of caregiving. The findings of our study support another study from Karnataka^[29] which showed that caregivers used both positive and negative coping strategies. They also found a significant negative correlation (r = −0.722, P = 0.005) between stress and coping among caregivers of palliative care patients. Papastavrou et al.^[30] in their study have concluded that informal caregivers adopting emotion focussed coping to be depressed and manifest increased burden.

The perceived benefits by caregivers in our study were taking pride in being a pillar of support to their loved ones and finding meaning and purpose in their tasks. This phenomenon of self-transcendence in finding meaning and faith in their tasks help overcome adversity by caregivers of terminally ill cancer patients as observed by Enyert and Burman.^[31]

Unrealistic expectations and wishful thinking were seen in our caregivers. This is not uncommon in Indian caregivers with strong interpersonal relationships and a culture influenced by filial responsibility. A recent study examining hope and its relationship to QOL found that positive readiness and expectancy as well as interconnectedness to be negatively correlated with quality of life in cancer caregivers.^[32]

There are few limitations to this present study. Being a cross-sectional study, the experiences of the caregivers throughout the illness trajectory of the patient were not obtained. Given the small sample size, the quantitative data could not be further analysed, thus making the generalisability of the data difficult. However, further research with a longitudinal study will improve our knowledge of caregiver experiences throughout the illness trajectory. Knowledge gained from the study can also be used for intervention such as respite care, social and financial help to caregivers to improve their coping and decrease their burden.

CONCLUSION

Caregivers of advanced head-and-neck cancer patients in our study had their QOL impacted by the caregiving in physical, emotional, sociocultural and financial aspects. While the perception of illness bordered on unrealistic expectation and wishful thinking, most caregivers’ appraisal of caregiving was positive and they perceived some benefits in their deeds. They were able to cope with the perceived family supports and by adopting active coping strategies.