Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method

Search strategy

The following databases were searched in August 2020: PubMed (Jan 2010-Jan 2020) and the Indian Journal of Palliative Care (IJPC) (2010–2020). Reference lists from retrieved and selected articles were hand-searched.

Search terms

Inclusion and exclusion criteria

A protocol was developed in advance to document the analysis method and inclusion criteria. We utilized PubMed and IJPC to search for papers published on studies done on the perspective of Indian caregivers keeping in mind the socio-cultural factors that effects opinion and decision-making attitude,^[7] irrespective of the setting.

Inclusion criteria

• Articles published in English

• Data involving perspective, attitude, needs, and concerns of Indian caregivers of paediatric palliative care patients with cancer

• Data of Indian Caregivers/parents

• Papers published within the years 2010–2020.

Exclusion criteria

• Case studies, commentaries, editorials, and case reviews

• Non-oncology paediatric palliative care papers

• Studies were done on the non-Indian population

• Grey literature.

Data extraction and analysis

The title, abstract, keywords, authors’ names and affiliations, journal name, and year of publication of the identified records were exported to Zotero for review. Two independent reviewers screened the titles and abstracts of the records independently and papers were selected and discarded in line with inclusion and exclusion criteria. The bibliographic details of the extracted data were sorted and arranged in Zotero for data management and the data were sorted and selected against the essential items of PRISMA checklist, please refer to the [Appendix A]. Then, the two reviewers performed an eligibility assessment by carefully screening the full texts of the remaining papers independently. During this phase, disagreements between the reviewers were discussed and resolved by consensus. If no agreement could be reached, the views of a third reviewer would have been taken into consideration.

Subsequently, all the included papers were carefully reviewed to extract and code the data.

Summary of literature

Of the nine studies, one was a review of paediatric palliative care in India,^[17] two studies were specifically conducted on mother’s perspectives,^[18] one study was an in-group correlational design that analysed Coping, spirituality, and Caregiver’s burden between father and mother,^[19] while one study drew a comparative analysis between caregivers of survivors versus non-survivors in respect to their psychosocial, spiritual and financial concerns.^[20] However, two independently published studies submitted 5 years apart overlapped significantly in focus, content, and data with slight variations in data findings,^[4,8] but since one specifically focused on the cultural perspective of communication^[4] while the other on parental attitude and communication,^[8] both the studies were included in the study. Data findings are reported in [Table 2].

Key themes

After reviewing the studies for parental perspectives of paediatric patients undergoing cancer treatment, several key themes were identified from the text which emerged frequently. The key dimensions in parental perspectives are noted below.

Parental needs

A study conducted by James and Johnson in 1997^[25] aimed at studying parents’ perceptions of their needs while their child was dying of cancer. Three needs were identified: (1) the need to retain the responsibility of parenting their dying child; (2) the need for caring and connectedness with health care professionals; and (3) the need to have the child recognized as special while retaining as much normality within the child’s and family’s lives as possible.^[25] Along with it, culturally appropriate communication,^[4] diagnostic and prognostic communication^[8] were reported as the primary needs, accompanying social support, bereavement support, and financial support.^[17] And finally, counselling needs and psychological support were found to be crucial needs of parents.^[26]

These pre-existing, unmet needs may complicate care and decision-making.^[24] Hence, understanding parental perspectives of what they need and what they value is crucial to communication and decision-making.

All studies were focused on parental needs where the need for effective communication was a recurring need followed by the need for social support, emotional support, along with financial support. Spiritual needs and Bereavement support were also recorded as important needs.

Parental concerns

Parental attitudes hinder open communication with dying children in India, with a need for research to explore these concerns of parents.^[27] In a recent study conducted by Tutelman et al.,^[28] parents’ concerns clustered into four main themes: (1) ensuring that their child’s remaining days were spent living well physically, emotionally, and socially; (2) uncertainty regarding their child’s diagnosis, prognosis and treatments; (3) their child’s death (e.g., the process of dying and when it will occur); and (4) the family, including the impact of the child’s illness and death on siblings and wanting to cherish as much time together with family as possible.^[28] There could be a host of such concerns identified in parents and could be summarized into parental concerns for the quality of life, symptom management, characteristics of death, end of life decision-making, treatment and treatment outcomes, and financial concerns among others.

Six out of nine studies reported parental concerns expressed by caregivers,^{[4,17,18,20,26,29]} with quality of life of the child being a recurring concern followed by treatment outcomes, future of the child, characteristics of death, treatment support, and financial support. One study reported a major parental concern being their concerns; their goals, perspective, decision-making, and treatment support concerns not being addressed adequately.^[20]

Parental attitude

The UN Convention for the rights of a child (Assembly resolution 44/25 of 20 November 1989 entry into force 2 September 1990, following article 49) recognized a child’s right as a decision-maker.^[30] While Feudtner in his study explained that in paediatric care, decision-making is triadic, involving the parents, the kid, and the clinician.^[5] Indian parents might have a different almost negative attitude toward involving the child in decision-making, or shared decision-making.

Six studies reported parental attitude out of which three studies pointed out that parents have a protective attitude toward children,^[4,17] favoured collusion,^[4,8,17] and all six papers reported parents did not want to reveal diagnosis, prognosis, or treatment procedures and outcomes to their children.^{[4,8,17,26,29,31]}

Cultural perspective

Dealing with the potential loss of one’s child is a terrible experience across cultures^[32] and while ‘the right to know’ is accentuated in bioethics, in certain cultural contexts, health professionals fear communicating the bad news causing the patient or families not to receive the news directly.^[33] However, the literature suggests that cultural influences may further complicate the appropriate integration of paediatric palliative care making it a frequently occurring barrier to adequate paediatric palliative care as reported by health care providers.^[34] For example, Indian parents have reservations about western medicine, feeling they are too strong or too hot for children, often leaning toward alternative medications without informing the treating Doctor,^[4] frequently unwilling to undertake major life-saving surgeries or treatments fearing they would compromise their child’s (female) physical appearance or lead to permanent disability, infertility, deformity, loss of vision subsequently hampering the future prospects of marriage.^[4] Hence, the care team needs to understand these cultural perspectives and barriers so to make the communication more fluid and aid important decision-making among caregivers. Only one study emphasized the cultural perspectives of parents,^[4] while other studies touched the subject briefly and eluded swiftly without putting much significant emphasis on it probably because the focus of the studies was on other aspects of parental perspectives.

Spiritual perspective

How religion, spirituality, and faith play an important part in decision-making across cultures is a question that researchers and clinicians need to address in paediatric palliative care.^[35] Different religions and faiths may have different practices in illness, death, and dying. For instance, in Buddhism family’s presence is considered important, they may chant mantras as infant/child becomes seriously ill and would not touch the child’s body after death,^[36] while in Catholicism sacrament of the sick is done with the anointing of oil, communion and final blessing by a priest.^[37] In Hinduism, it is considered ideal to be surrounded by family and friends who chant sacred hymns and say prayers or chant the dying person’s mantra, when death is near, the family spiritual leader is asked to conduct final rites and cremation^[38] whereas in Islam the body is washed 3 times, Muslim burial is done within 24 h and cremation is prohibited.^[39]

Different communities across the globe have different beliefs in regards to illness with diverse end-of-life practices. In Buddhist, Hindu, or Confucian faiths illness and suffering are sometimes attributed to bad karma,^[40] and these communities view suffering as a mechanism for the atonement of sins committed in a past life. South Asian communities often attribute illness and suffering to sins committed in a previous life,^[41] while avoidance of suffering transfers the pain to the next life.^[42] Actions taken at the end of life are sometimes associated with advanced bereavement reactions. For example, in the Chinese culture, bad death is often associated with a curse making parents overwhelmed with guilt if they cannot facilitate what they believe to be a good death for their child.^[43] Hence, conducting spiritual assessments with the child and family is an essential element of paediatric palliative care.^[44]

In the systematic review, three out of nine papers emphasized parental perspectives in spiritual terms.^[18-20] Strong faith in God established meaning and purpose among mothers,^[18] in another study spirituality was a significant predictor of emotional, physical, developmental, and social burden and was a major coping mechanism for mothers in comparison to fathers^[19] whereas one study pointed out parent’s inclination toward miracle healers and astrology.^[20]

Financial perspective

About 25% of cancer patients consume most or all of their savings in their cancer treatment,^[45] and India being a developing country the delivery of affordable and reasonable cancer care is one of the greatest public health challenges, breaking the back of the families with catastrophic out-of-pocket expenditures.^[46] A high financial burden with no proper financial support may lead caregivers who come from lower economic backgrounds to desperation. They may find it hard to continue treatments for their children, sometimes leading to the abandonment of treatment where the rate of abandonment is between 17 to 62% in Tertiary centres.^[47]

Three papers specifically focused on the financial perspective of parents [Table 3].^[18,20,30] The first question asked by caregivers after the first counselling session of breaking the bad news of cancer diagnosis was whether they may get any financial help and if so, from where (30 Mohan, 2016). Parents expressed their grief of the loss of lands to bear treatment costs along with burrowing money and loss of wages.^[20] Most of the parents did not have insurance and at times considered abandoning the treatment.^[20]