Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis

INTRODUCTION

The active total care of a child’s body, mind, and spirit that includes supporting the family is known as palliative care for children.^[1] Chronic illness affects 3.49% of children aged 0–14 in Kerala, South India.^[2] Twenty-six percent of individuals in need have improved access to palliative care in Kerala, thanks to the ‘Pain and Palliative Care Society’ and neighborhood networks in palliative care, which provide local community-based care.^[3] Data on caregiver issues of paediatric non-malignant palliative care are suboptimal, despite this remarkable advancement of palliative care in Kerala. Assessment of caregiver satisfaction related to communication and decision-making has been studied in adults but hardly studied in children with complex chronic conditions who have multiple unmet needs for palliative care.^[4] Complex chronic conditions are defined as ‘any medical condition that can reasonably be expected to last at least 12 months (unless death intervenes) and involves either several different organ systems or one organ system severely enough to require specialty paediatric care and some period of hospitalisation in a tertiary care centre’.^[5]

Hospitalisation for palliative care is usually to decide on the management plans for intermittent crises, including sharing advanced decisions with the parents regarding interventions.^[6] Given the unpredictability of their course, chronic illnesses in children can come with heavy physical, psychological, financial, and social consequences for both the patient and caregiver. Extrapolating adult palliative care data is inadequate because there are distinct patterns of paediatric life-threatening conditions.

Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their original concerns instead of presumed needs. Caregiver concerns may be strikingly different from what the paediatrician considers the first issue to be addressed in CIC. Such knowledge helps to avoid misunderstandings and frustration of parents while clinicians manage chronic illnesses. It also aids clinicians in creating realistic plans of care for these patients. Furthermore, potentially modifiable factors in the current health system can be identified and modified to improve comprehensive child and family care. Hence, there is a definite need to study the issues, unmet needs, and challenges faced by families of CIC.

This hospital-based study aims to identify and describe the most worrisome issues for the primary caregiver of a chronically ill child admitted to the paediatric ward of a government medical college in Kerala, South India.

MATERIALS AND METHODS

SRQR guidelines were followed for conducting and reporting this research.^[7] The research protocol was approved by the Institutional Research Committee and the Ethical Committee. Thematic analysis is the method chosen for qualitative data analysis in this study, as the aim was to describe caregiver experiences and explore their most problematic issues. The study population selected were parents of children aged <13 years with non-malignant life-limiting illnesses admitted to the paediatric department of a government medical college in Kerala between 1 July 2021 and 28 February 2022.

Those participants who could not speak the local language (Malayalam), those patients who had surgically correctable or medically curable conditions, or those who were recognised to be highly ill were excluded from this study.

Written informed consent was obtained from all the participants in the study before the interview [Appendix A]. After establishing a good rapport with the participants, in-depth interviews were conducted by the principal investigator during the study period with a conversational approach so that they could freely share their own experiences, issues, and needs. An interview guide was used for structuring the interview. The interview was conducted by the principal investigator in a private room in the hospital. Data collection included recording and transcribing the interviews into text. Field notes were also written during the interviews. The interview began with an open question: ‘Can you tell me what worries you the most regarding your child’. More detailed responses were elicited by asking about their important needs, physical, sleep, treatment, financial, drug availability, and family issues [Appendix B]. Interviews lasted an average of 1 hour. A consecutive sampling technique was used until data saturation was achieved. In the event of the caregiver having an emotional breakdown, the recording would be immediately stopped. The interviewer would provide them with empathetic support. These caregivers were referred to the psychiatrist and also received psychological counseling. Caregivers continued to have regular follow-ups with the psychology team, even after the discharge of the chronically ill child (CIC).

Information bias was planned to be minimised by audio recording during data collection. To prevent selection and information bias, the third author, who was not in direct contact with the participants, was involved in the process of identifying codes and extracting meaning units. The validity of this was confirmed by the other authors who cross-checked it. The first author translated the original text, which was in Malayalam, to English. The second author has been formally trained in paediatric palliative care. The third author is trained in qualitative research methodology.

RESULTS

As there were two CICs in one family, there were a total of 25 CICs. Among them, 14 were male (56%). Interviews were conducted with 24 primary caregivers. The interview was done with 15 mothers, eight fathers, and one paternal grandmother who were the primary caregivers of the CIC. The age group of patients with non-malignant life-limiting illnesses ranged from 9 months to 13 years of age. The baseline characteristics of the patients and their caregivers are given in Table 1.

The average age of mothers was 35 (standard deviation [SD] ±5.46) and the average age of fathers was 41.8 (SD ±6.32). The length of continuous hospital stay for the chronically ill child varied between 15 days and 350 days in a year [Table 2]. One mother had two children with life-limiting illnesses. By the end of the study period, 4 of the 25 CIC had succumbed to death. Twenty-two of the 25 (88%) who required recurrent and prolonged hospital-based palliative care were due to chronic neurological conditions.

Figure 1 illustrates the identified ‘themes’ of caregiver issues and needs. Sleep issues in caregivers and the CIC, poor seizure control, excessive oral secretions and infected bed sores in the CIC were the major medical concerns reported. It was observed that a ‘diaper’ was the crucial and universally necessary item, according to caretakers, for all CICs. Common codes identified are also included in Figure 1.

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Figure 1:

Major themes and subthemes.

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DISCUSSION

Children with chronic critical illnesses are reported to have five times longer hospital stays than other patients.^[12] According to Higginson et al., hospital-based palliative care teams improve care for patients and families.^[13] Neurological illness is the major system involved in our group of CIC. Fuhrer reported a similar pattern in CIC (75%).^[14] Severe refractory epilepsy, as defined by Kwan and Brodie, is associated with a high risk of mortality and morbidity, including sudden unexplained deaths.^[15] The lack of availability of antiepileptic drugs in the peripheral health centres causes a significant financial drain since they have to travel to tertiary care centres to procure the same. If these drugs were made available in the peripheral health units as part of the Rashtriya Kishor Swasthya Karyakram by the National Health Mission, this would help reduce the out-of-pocket expense and indirect cost incurred for travel.

Excessive oral secretion is a main concern for many caregivers, which is often not considered an important issue by some paediatricians. The sudden onset of prolific respiratory secretions at the time of death or ‘death rattle’ can be controlled well with morphine, especially in neurogenic pulmonary oedema.^[16] End-of-life care challenges were not included in the interview guide. Endof-life care was offered to three children (cases 5, 9, 17). However, it could not be given to one child who suddenly deteriorated (case 14). This mother’s main worry was the pain her child underwent after two intercostal drainage insertions. Pain prevention and control is another important issue that should be addressed from the intensive care unit itself and continued till the very end of life. Reflective open-ended questions help to optimise treatment by the palliative care team after aligning with the care goals of the patient and caregivers.^[17]

Parental need to engage with children and the need to listen to them is recommended for normal children,^[18] but our study participants (cases 6 and 15) revealed that they felt despair when they could not communicate with their children. Cases 7 and 17 experienced a great deal of confusion, emotional stress, and financial loss due to contradictory opinions given by different systems of medicine regarding the cure of the disease. False hopes contributed to their depression. Treating units can use the language of the right hope to promote patient welfare without denying the facts to the caregivers of the patients.^[19] False hopes can be avoided by providing facts about the nature of illness and the effectiveness of various end-of-life care plans. Caregivers of CIC expressed relief on the discontinuation of futile treatments and on the provision of meaningful hopes.

Parents of cases 1, 6, 8, and 23 revealed a feeling of unease when the subject of an eventual transfer to adult care was brought up, which is consistent with Menon J et al. findings.^[20] Significant psychological issues in both children and their parents have been reported due to the increased financial burdens due to the loss of jobs, especially in pandemic situations.^[21] A system to access the available government funding without delay would mitigate these caregivers’ distress, as Govindaraj et al. suggested in a similar setting with a different group of paediatric patients.^[22]

Paediatricians often presume that the most important requirements of children with chronic illness (especially those with chronic neurological illness) are equipment such as cerebral palsy chairs, callipers, or orthoses.^[23] Contrary to such presumptions, this study reveals that the majority of them needed ‘diapers’. The purchase of diapers accounts for a significant expense for the chronically ill child. Provisions for free-of-cost diapers through the government or NGOs will help tackle this major concern shared by the caregivers in the present study.

Sleep issues in both parents and the chronically ill child are another significant problem that is not usually addressed during routine rounds by paediatricians. Increased nighttime awakenings were reported in our study subjects. This finding is similar to the study of Hysing et al.^[24] Caregiver depression and fatigue were found in those participants whose sleep was disrupted due to nighttime care. Chronic sleep deprivation in the caregivers negatively affects the care of CIC.^[24] Adequate rest for these mothers at home will be possible through the establishment of palliative day care centres at the peripheral level with community participation and involvement of local self-government.^[25]

Advice to mothers of spastic quadriplegic children to frequently change their position to prevent bedsores is not going to be effective or practical unless the rest of the family members or palliative care staff lend the mother/primary caregivers a helping hand in doing this, particularly in the case of obese children. Networking of various governmental and non-governmental palliative care centres would boost the services provided to the chronically ill and their families.^[26] Nursing interventions such as changing feeding tubes, urinary catheters, and dressing bedsores can be coordinated with such service providers. The treating paediatricians should contact local palliative care providers before discharging these in-patients so that continuum of care can be maintained.

CONCLUSION

The challenges faced by caregivers of children with complex chronic conditions are multifaceted. Their most worrisome issues related to medical issues are the occurrence of breakthrough seizures and development of infected bedsores. The most important material hardship reported was diaper need. Caregiver issues such as sleep deprivation and maternal depression must be identified and addressed while providing comprehensive palliative care.