Issues Related to Children-Faced by Armed Forces Families When Caring for Patients in Palliative Care – A Qualitative Study

INTRODUCTION

Palliative care is still an evolving concept in India. Access to palliative care, pain relief, and end-of-life care is limited, especially in rural areas. Children needing care by palliative teams may themselves be patients, or siblings and children of patients in palliative care. Paediatric palliative care has a different spectrum of diseases than adults – with intense and complex psychosocial demands placed on the caregivers. In the armed forces, which have their unique lifestyle and challenges, these add up to create situations that may differ vastly from those in the civilian setup. Frequent relocations with serving personnel staying apart from families for most of their careers are the defining features of life in the armed forces. Difficult conditions of living and working in remote and far-flung areas, the omnipresent fear of disability and death during deployment, and limited days of leave from duty lead to stress for both the personnel and the families. Evidence shows that military service increases the risk of psychosocial burden not only for serving personnel but also for their spouses and children as well.^[1] The enforced family separations lead to intrapsychic conflicts for wives and children of serving fathers absent from home, resulting in predominant anger, mourning, and guilt, as seen in grief reactions, often escalating to crises.^[2]

Families may stay in their native places or sometimes in campus accommodations, which are few and allotted for a limited period only. They face the same lack of access to palliative care and pain relief in rural areas as other Indians. Since families in native areas depend on private and state medical services for their palliative needs, it is important for healthcare workers to be aware of and understand their issues to be able to offer meaningful support.

There is a paucity of literature on palliative care in the Indian armed forces. A literature search using the terms ‘caregivers’, ‘armed forces’, and ‘palliative care in India’ in PubMed, EMBASE, CINAHL, and MEDKNOW revealed only three articles related to palliative care in the Indian armed forces.^[3-5] This study was, therefore, undertaken to address the knowledge gap.

This study aimed to explore the issues related to children – faced by armed forces families when caring for patients in palliative care.

MATERIAL AND METHODS

This is a qualitative study based on semi-structured interviews with caregivers of patients with palliative needs, conducted after obtaining informed consent and necessary ethical approval. The study sample was drawn from three secondary-level hospitals (Delhi, Jalandhar, and Jodhpur) of India’s Border Security Force (BSF) – an International border-guarding armed force. Caregivers of patients registered in the previous 3 years were listed. Random lots were drawn to select names. The inclusion and exclusion criteria are shown in [Table 1].

Informed consent from participants was taken after giving all information about the study. Written information sheets were given, both in English and Hindi. Participants could refuse participation at any time without any penalty or loss of benefits entitled otherwise; important because armed forces are a ‘vulnerable research population’.^[6] A subject could withdraw after written or verbal intimation and would be replaced by another from the list of possible participants by drawing lots. The subject’s participation could be terminated by the investigator if the participant was physically or mentally incapacitated during the research. A ‘distress protocol’ was established to support distressed subjects.

Participants were invited through letters and email. Fifty letters were sent out. Twenty-one caregivers agreed, and six dropped out later. Two were transferred, three proceeded on temporary duty and one did not want to revisit the grief of bereavement. The interviews were conducted after written consent, recorded in a digital recorder, and transcribed verbatim by the researcher. The consent form [Table 2] was drafted with the help of the research supervisor.

The interviews [format in Table 3] were conducted at the residences of the interviewees at the date and time of their preference, pre-decided through phone or email. In the beginning, asking questions about personal details helped break the ice, build rapport, and collect basic information. Non-verbal communication was observed and noted. The average duration was 90 min. It was ensured that all the general themes had been mentioned and the interviewee got the opportunity to comment on all of them. Any additional information such as interruptions, silences, and new themes was noted. Transcription was done by the investigator, allowing exact transcription as well as analysis of finer nuances and non-verbal communication, which would have been lost if someone else had done it. The translation was done into English from Hindi and scripts were randomly checked by a Hindi teacher proficient in both languages. After 12 interviews, new themes were still emerging so interviews were continued till data saturation occurred at 15 interviews. These were recorded without any names or identifying features, allotted serial numbers and stored in a computer, under triple-layer security.

RESULTS

DISCUSSION

This study is in consonance with earlier quantitative and qualitative studies as well as systematic reviews about caregivers of paediatric palliative patients which highlight the substantial and heterogeneous support needs of caregivers of children in palliative care.^[7-11] There is also evidence that service families face higher levels of stress, children’s psychological issues, financial burden and delays and interruption in patient care – all compounded by having a family member with palliative needs and young children to manage, in the absence of the serving personnel.^[2,12-14]

An expert consensus panel has recommended six domains for quality improvement in paediatric palliative care – continuity of care being one.^[15] Learning of the child’s diagnosis is highly distressing for parents and marked with emotional chaos. Communication, continuity of care, and symptom management in children are all found to be associated with long-term parental grief levels.^[16] Retrospective qualitative studies have found that parents perceive continuity in relationships as the key to ensuring that clinicians know and care about the child and parents. ‘Continuity also provides comfort and coherence in hospital environments, frees parents to sustain normal routines; enables parents and teams to share expertise, information, and goals, and improves the chances of timely recognition of changes in the child’s condition’. All of this increases parents’ confidence that their child will be given the best possible care.^[15] The absence of continuous, caring relationships results in parents feeling frustration, hypervigilance, and mistrust of the quality of care. Healthy therapeutic relationships are vital to remind parents that they are not alone in their struggles. Communication and continuity of care are therefore valued by parents and considered vital for all healthcare staff.^[17]

The interviews showed that lack of sufficient accommodation in family locations, frequent movements, and difficulty in getting leave make treatment and follow-up difficult. The social support system that may have been built up at one location is interrupted with each transfer and has to be built up all over again.^[18] The personnel report difficulty in socialising with friends and family, hence the inability to develop the social support systems and safety network available to those staying in one place.^[12-14] A government policy that allows ‘exemption of government servants caring for disabled children from routine rotational transfer subject to administrative constraints’, is liable to subjective interpretation and cannot be implemented in armed forces due to the nature of duties.^[18]

Psychological issues in serving personnel include guilt, helplessness, and anger at not being there for the family. The leave they are allowed is not sufficient to meet the needs of palliative patients.^[12,14,18] Sometimes, they may not be able to attend even the last rites of family members. The wives feel overburdened, lonely, and resentful. Anxiety and worry affect both. This is also highlighted by a study of stressful life events in serving personnel which showed that out of 52, nearly two-thirds relate to leave, relocations, and family problems.^[19]

A landmark study of 792 military children mentions that – ‘probably the most severe stress a military family faces is enforced separation from the father. Whatever support he has been to the family is gone or reduced. In his absence, one member may take over the functions the father had, and family dynamics change. The wives left alone must learn to manage on their own. The family’s expectations of him may differ from his own – resulting in rejection, anger, and frustration on both sides’.^[2] Mental health issues, including anxiety and depression, were found to be more common in service families than in civilians.^{[2,12,13,19,20]}

These issues have also been highlighted by Verma et al. for Indian paramilitary and Prakash et al. for army families.^[12,13,18] Lagrone found that due to frequent movements, there is insufficient time for relations to develop with the local community. Relationships external to the family remain shallow. Force personnel may be seen by the local community as ‘outsiders and transients’ and viewed with mistrust and hostility.^[2] All these lead to poor rapport with local healthcare workers, support from the community and repeatedly disrupted care.^[2]

A Canadian report on Medicare in armed forces emphasises the ‘stop-start nature of access to medical care in military communities, half of which are located in rural, isolated, or semi-isolated areas where care can be hours away, if available at all. Navigating new healthcare systems can be onerous and frustrating, with eligibility and reimbursement policies causing considerable stress’. ^[20]

Medical records of service families are sometimes not transferred efficiently from location to location. Providers can encourage them to keep copies of their medical records and help them locate services in their new location. Electronic records can be helpful but may not be feasible in remote areas.^[20] Language can be another major barrier when living in non-native states. Complex communications may be facilitated by taking assistance from family members, staff, or unit personnel who can help with translation. ‘Face-Rare’ is a pilot intervention found helpful in eliciting and addressing the palliative care needs of children and using telemedicine to plan ahead and support families.^[21]

Finances are reported to be a major challenge. Even though dependents get free treatment in BSF and state government hospitals; not all the services, medicines, devices, mobility aids, and equipment needed are available and have to be purchased out-of-pocket. Reimbursement is subject to limits. Other studies report similar regulatory barriers with a lack of reimbursement for many services needed to ensure a child’s best quality of life and uncontrolled patient symptoms and financial difficulty leading to higher severe parental psychological distress.^[18,22]

Spiritual distress was common and all psychosocial issues were more pronounced in the parents of paediatric patients in agreement with other studies on this population.^[8,23,24] The notion of fate and ‘Karma’ are mentioned often. This concept helped most caregivers find acceptance and make sense of their circumstances, similar to the findings of earlier authors.^[25-27] One mother, however, found the idea of her child suffering as a result of her karma very distressing. Counselling and support services for these carers are nonexistent and need developing Gielen’s study which found that more than half the subjects would benefit from spiritual counselling also recommends setting up these services.^[28]

However, not all is bleak in service life. The people in the unit fulfil the role of ‘next of kin’ in the absence of family members. The caregivers report that service families support each other practically by looking after the children in the absence of parents, dropping siblings at school, helping with cooking and shopping, blood donation, bank work, official correspondence, financial help, guidance for obtaining welfare benefits, and legal and financial settlements. Emotional help is provided through moral support, encouragement, grief, and bereavement support. These are also built into the administrative duties of the armed forces.^[18]

CONCLUSION

Issues related to children in families of patients with palliative needs are complex and involve many challenges – more so for service families. Frequent movement and social isolation disrupt medical care as well as family and community support systems. These along with the lack of access to paediatric palliative services in far-flung areas; guilt, anger, and helplessness in the serving personnel who cannot be present for their families due to the nature of duties; the wives having to manage alone in the father’s prolonged absence, safety concerns for children when living outside the campuses; financial burden due to restrictive reimbursement policies, language, and cultural barriers when living in distant parts of the country-lead to distinctive issues in this population. However, the medical and administrative support from the organisation and other families within the campus provides a safety net. Awareness and education of the palliative service providers about the needs of children from armed forces families can help provide better care and support to patients as well as caregivers.