Indian Journal of Palliative Care
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Year : 2008  |  Volume : 14  |  Issue : 1  |  Page : 16-22

Parental concerns in children requiring palliative care

Palliative care services, Tata Memorial Hospital, Mumbai, Maharashtra, India

Correspondence Address:
Manjiri Dighe
Palliative care services, Tata Memorial Hospital, Mumbai, Maharashtra
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/0973-1075.41927

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 » Abstract 

Children with advanced, life-limiting illness have unique needs which are different from those of adults. Pediatric palliative care is an under developed specialty.
Aims : To identify concerns of parents of children with advanced, incurable cancers, and to elicit their attitudes toward revealing the diagnosis and prognosis to the sick child.
Method : This study was carried out in a large tertiary cancer center in India. Parents of 20 pediatric palliative care patients attending the outpatient department were interviewed and emerging themes identified.
Results : Parents showed varying degrees of anticipatory grief. Most families were financially strained. Most parents were reluctant to discuss disease and dying with the child. Siblings were rarely told or directly involved in care. There was resistance to allowing the palliative care team to communicate with the patient. Patients did not receive any formal support. Parents identified family and neighbors as the main sources of support.
Conclusions : Parental attitudes hinder open communication with dying children in India. There is a need for research to explore the concerns of families of children with fatal illness. Specialist training is required for professionals working in pediatric palliative care to address this issue.

Keywords: Disclosure, palliative care, parental attitudes, pediatric

How to cite this article:
Dighe M, Jadhav S, Muckaden MA, Sovani A. Parental concerns in children requiring palliative care. Indian J Palliat Care 2008;14:16-22

How to cite this URL:
Dighe M, Jadhav S, Muckaden MA, Sovani A. Parental concerns in children requiring palliative care. Indian J Palliat Care [serial online] 2008 [cited 2021 Jun 21];14:16-22. Available from:

 » Introduction Top

New advances in cancer management have improved survival among children with cancer. [1] However, some children with advanced cancer still die.

The needs of children with incurable cancers differ from those of adults. [2] Cognition in children is age dependent and modified to some extent by cultural values and the child's experiences. The understanding of death and dying varies with age. [3]

While attempts are being made to apply the principles of palliative care to the management of such children, pediatric palliative care is still not Widely recognized as a specialty. [4]

Palliative care for children has been defined by the Association for Children with Life-threatening or Terminal Conditions and Their Families, and the Royal College of pediatrics and Child Health [5] as: "an active and total approach to care embracing physical, emotional, and spiritual elements. It focuses on quality of life for the child and support for the family and includes management of distressing symptoms, provision of respite and care through death and bereavement." Parents of these children are closely involved in care. Parental attitudes influence the treatment and care decisions. Little is known about the concerns of parents of children with advanced cancers in the Indian setting.

We carried out the present study as a pilot to identify the concerns and attitudes of parents of children attending the palliative care outpatient department of our clinic.

 » Objectives Top

  1. To examine the concerns of parents of children having advanced incurable cancers.
  2. To identify the attitudes of the parents toward disclosing the diagnosis and prognosis to the patient and siblings.

 » Methods Top

This was a pilot study carried out over a period of 1 year in the palliative care outpatient department of a tertiary cancer specialty hospital in western India. Ethics approval was granted by the head of the department.

It was an observational study using semi-structured interviews. Semi-structured interviews were used as a qualitative tool where focused conversational two-way communication could be attained within an open framework. [6]

Parents of 20 patients attending the palliative care outpatient department were interviewed after obtaining verbal consent. Confidentiality was maintained by deleting client references from the interview records. Demographic details of the family including number of family members, education, and income (where relevant) of each were recorded. The details of treatment-duration, modality, and time of referral to palliative care service were recorded.

Each interview was carried out by a social worker working in the palliative care department. A counselor was also present and was responsible for recording the interview verbatim. However, the counselor did not have any active part in the interview sessions.

The interview was aimed at exploring the parents' concerns about their child's illness, their understanding of the child's diagnosis and prognosis, and their attitude toward revealing information about the illness to the child. We also attempted to identify the siblings' knowledge and understanding. The parents were also asked about any specific concerns regarding caring for the child at home, dealing with emergencies, and availability of support.

Each interviewee was allowed to ventilate his or her feelings. In addition to routine psychological counseling, further mental health intervention was offered wherever deemed necessary.

After each session, both SJ and X reviewed the recording and noted any additional observations.

Each interview record was analyzed by the two authors SJ and MD for their content. Themes that emerged from the informants' stories were pieced together to form a comprehensive picture of their collective experience. Thematic analysis was done to identify emerging themes. [7]

 » Results Top

Twenty interviews were conducted in all. Five involved only the mother, four only the father, and eleven both parents.

The demographic, diagnosis, and treatment details are listed in [Table 1].

There was almost an equal distribution of boys and girls. Forty percent children were in the adolescent age group, 10% were toddlers, and the rest between 3-14 years of age.

The commonest diagnosis was osteogenic sarcoma; other diagnoses included peripheral neuroectodermal tumor (PNET), neuroblastoma, and leukemia. Most patients had received a combination of surgery, chemotherapy, and radiotherapy. Duration of treatment varied from <6 months to >2 years.

Out of the 31 parents interviewed, all were aware of the diagnosis. Twenty-nine were aware that the disease was advanced and incurable. All had received their diagnosis from a doctor.

The reactions of parents to receiving a diagnosis of incurable cancer in their child are listed [Table 2].

The commonest parental reaction was a feeling of sadness and was expressed by all those interviewed. Ninety percent expressed helplessness. Thirty percent expressed regret that treatment could not be completed due to financial constraints. Twenty percent had faith that alternative therapy would help. All parents were deeply concerned about any further pain and suffering that the child may face. All were concerned about being able to cope should a medical emergency occur at home.

A part of the interview focused on the attitudes of parents toward speaking with the children about their disease and the obtained results are given in [Table 3]. Thirteen parents felt that the child already knew- these were the older children who could possibly read their case files on their own. Seven parents felt that the child was too young to understand; two were open to discussing the disease with the child but felt that it would be too difficult to talk about dying. Four parents felt that the child must be told but felt that they would not be able to do so themselves. Five parents consistently felt that the child should not be told at any cost.

None of the children was given an opportunity to speak to their primary medical carers alone. In the palliative care services, most parents were very anxious and did not allow any team member's access to the child. The children who were aware seemed to have gleaned information from reading their file or from overhearing conversations of adults. Prior to referral to the palliative care clinic, none had received any formal support or counseling.

Parents were asked about their perceptions of the child's reaction to his or her illness [Table 4]. Four reported that the child became tearful; two children appeared to be depressed. Five children were fed up with pain and suffering and two desired to die so that the suffering would end. Two children accepted the situation and consoled their parents. Two children were positively hopeful of getting well. One child, a 10-year old girl who had recently lost her grandmother, expressed her desire to meet her dead relative.

We sought to explore the reasons for the reluctance of parents to disclose diagnosis to the patient. The common responses were that patient would not survive if told, parents felt protective and hence would not disclose, that the child would feel sad and hopeless or that the child was too young to understand.

We noted that siblings were rarely told about the patient's illness directly by the parents. Those who were informed were older children who may be contributing to the families' income or may accompany the patient to hospital in the absence of the parent. None of the parents felt that any of their healthy children resented the special attention given to their sick sibling and in fact expressed concern about the sick child. One parent worried about her other children also suffering from a similar illness. Siblings definitely had unmet information needs. The lack of additional emotional support during a stressful period for the family may have long-term implications for them. However, additional research needs to be carried out to test this possibility.

Parents reported that family members and neighbors were the mainstay of emotional support and in four families, members of the joint family helped in caring for the child.

Only two parents made special attempts to involve their children in activities to distract them from their illness. However, most parents reported that children enjoyed watching television, playing with friends, and drawing.

 » Discussion Top

The death of a child is regarded as one of the most painful bereavements. While it is especially true for the parents and the family, it may also hold for the health care professionals who have cared for the child. [8]

Papadatou [2] highlighted distinct differences between the care of dying adults and dying children: major discrepancies in how parents, the multi-professional team and young patients perceive and interpret the child's condition and palliative status, ethical and legal issues of autonomy for children, which are very different to those of adults. Dying children have different needs from adults, and professionals must have training and develop appropriate skills to relate to, and communicate effectively with, children. Parents of young patients are often much more directly and actively involved in the provision of care than in case of adults. The dying process of a child affects many individuals, with grief over the death of a child known to be more intense, long lasting and complicated than the grief process over the death of an adult patient. The dying process and the death of a child may have a unique impact on professional care providers, which may not necessarily be anticipated.

Piaget's concepts of cognitive development can be applied to deal with children at various ages. [9],[10] A young child up to 2 years of age does not have any concept of death and treatment must be aimed at providing physical comfort. From 2 to 7 years, children may see death as a reversible process; it is important to minimize separation anxiety and to deal with guilt feelings. A child between 7 and 12 years is likely to understand the permanence of death and may suffer from guilt, abandonment, and fears of body mutilation. The adolescent faces a struggle between a physiological need to be independent and possibly worsening physical symptoms and lack of control.

Up to 1970, it was believed that children need not be informed about their illness and a closed protective approach was recommended. The work of Waechter [11] and Bluebond-Langner [12] radically changed this view. They found that children with a fatal illness had extremely high levels of generalized anxiety even when the prognosis was not directly revealed to them. These children were likely to depict loneliness, separation and death in their fantasy stories. Waechter noted a marked discrepancy between what the children actually knew and what their parents perceived they knew. Very few discussed death concerns with their parents. Denial by adults may not be entirely effective in preventing anxiety in children.

We found that facing the reality of their child dying was profoundly distressing for all parents. Most exhibited varying phases of anticipatory grief. [3] All felt sad and most became tearful. Whittam [13] describes different grief responses arising from the imminent death of a loved one. The parents in our study expressed numbness, despair, sadness, and shock. Five parents reported feeling depressed. The mother of a 17-year old boy with recurrent osteogenic sarcoma developed acute psychosomatic symptoms on being told the prognosis.

The parents of children with advanced cancers face emotional stress and some may need intervention from mental health professionals.

Fluctuating degrees of denial were evident among the 11 parents. Six felt that alternative therapies would cure the child. The question of recommending or discouraging complementary therapies also needs to be addressed as it may put additional burden on the family's resources. [14]

Four interviewees accepted the diagnosis of cancer and the prognosis of incurable illness. These parents also felt that discussing these issues with the child would help. Kreicbergs and Valdimarsdóttir [15] in Sweden found that none of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27%) who did not talk with their child about death regretted not having done so. Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it.

The cancer therapy had placed a severe financial burden on all the families. Financial constraints had limited therapy in six patients.

One theme that emerged in our study was that the pediatric patients did not have adequate opportunity to interact with any health care professionals on their own. The importance of honest relationship between the health care professionals and parents and between carers and children is critical for optimal care. [16] It is also known that children with cancer are likely to have a precocious understanding of death. [17]

The children did not receive any formal support. We found this rather alarming. In fact five parents reported that their children appeared to be depressed. Psychological morbidity in children with advanced cancers is likely to go unrecognized and therefore untreated. This is detrimental to the patient. Inadequately controlled symptoms in a child in his terminal days may be a cause of prolonged unremitting grief for the family. [18],[19] The extent and nature of the psychological and spiritual suffering of children in their last days is not known. [20]

Several studies report that children (in western cultures) appreciate open communication about their illness and prognosis. [13],[21],[22] Our study demonstrated a marked absence of such openness in dealing with children with advanced cancer. The major barrier was the attitude of parents who did not permit the palliative care team to interact alone with the child. We encountered an overwhelming resistance from parents to speak with the children in most cases.

We also became acutely aware of the lack of specially trained personnel like child life support workers who have made valuable contributions to care in institutions where they work. [22],[23]

We noted that resources such as internet sites or books for information or support were not available to our patients due to nonavailability, illiteracy, or parental resistance.

It has been found that children over 14 years may be capable of making rational decisions about their treatment. [24] However, in our study most children were not involved in any decision making and parents and professionals made all decisions on their behalf. Most health care providers in the west are likely to believe in open and honest communication with a pediatric patient. However, a dilemma arises when parents insist on colluding with professionals so as to withhold information or when parents make a decision which may conflict with the child's point of view or endanger the child's psychological well being. Doctors and others involved in care of dying children are likely to encounter this ethical dilemma often. [25]

A child's illness has an impact on the entire family. Siblings may feel confused, uninformed and worried about their dying sibling. They may also worry about other family members and peers. Research indicates the importance of preparing children for a sibling's death, the ability of siblings to comprehend such information, and the fact that the bereavement period is eased if siblings receive such preparation. [26],[27]

In our study, siblings were rarely informed. Like the patients, their information and emotional needs were not addressed. However, none resented the extra attention give to the sick child.

Parents of dying children may not be able to devote adequate time and attention to the needs of their other healthy children, attend to professional and personal responsibilities and manage the suffering of their ailing child. [2]

Parents identified family members as the main source of support, especially in joint families. This reflects the Indian family system where large families live together and share responsibilities. Thirty percent of parents felt that the patient and family faced social stigmatization. One parent felt that the child's illness was due to their bad karma. These attitudes reflect common Indian cultural values and affect the coping mechanisms used by families.

It is clear that children with fatal illnesses have needs that are different from those of adults. The roles of carers, professional, and others are very different. Dealing with such children requires special training. Further research is needed to identify unique issues and to formulate specific strategies to care for dying children.

 » Conclusion Top

Parents of children with advanced cancers have varying degrees of anticipatory grief. Most parents resist attempts to discuss dying with their child although most acknowledge that the children seem to be aware. Siblings are rarely informed.

Research and special training is probably indicated for all professionals dealing with fatally sick children.

Strong cultural values affect the families' coping mechanisms, but further research is needed to assess the exact impact.

 » References Top

1.Young JL Jr, Gloeckler Ries L. Cancer incidence, survival and mortality for children younger than age 15 years. Cancer 2006;58:598-602.  Back to cited text no. 1    
2.Papadatou D. Training health professionals in caring for dying children and grieving families. Death Studies 1997;21:575-600.   Back to cited text no. 2  [PUBMED]  
3.Sheldon F. ABC of palliative care: Bereavement. Br Med J 1998;316:456-8.   Back to cited text no. 3    
4.Davies R. Establishing need for palliative care services for children-young people. Br J Nurs 2003;12:224-32.  Back to cited text no. 4  [PUBMED]  
5.ACT-RCPCH. A guide to the development of children's palliative care services: Report of the joint working party. 2nd ed. London: ACT-RCPCH; 2003.  Back to cited text no. 5    
6.Gillham B. Research interviewing-the range of techniques. New York: Open University Press; 2005.  Back to cited text no. 6    
7.Aronson J. A pragmatic view of thematic analysis. Qualit Rep 1994;2:1.  Back to cited text no. 7    
8.Spinetta JJ, Jankovic M. Guidelines for the recognition, prevention and remediation of burnout in health care professionals. Med Pediatr Oncol 2000;35:122-5.  Back to cited text no. 8    
9.Piaget J, Inhelder B. The psychology of the child. Translated from the French by Helen Weaver. New York: Basic Books; 1969.  Back to cited text no. 9    
10.Singer D, Revenson T. A piaget primer: How a child thinks. New York: Universities Press; 1978.  Back to cited text no. 10    
11.Waechter EH. Children's awareness of fatal illness. Am J Nursing 1971;71:1168-72.  Back to cited text no. 11    
12.Bluebond-Langner M. The private worlds of dying children. Princeton NJ: Princeton University Press; 1978. p. 34.   Back to cited text no. 12    
13.Whittam EH. Terminal care of the dying child. Psychosocial implications of care. Cancer 1993;71: 3450-62.  Back to cited text no. 13    
14.Cohen MH, Kemper KJ. Complementary therapies in pediatrics: A legal perspective. Pediatrics 2005; 115: 774-80.  Back to cited text no. 14  [PUBMED]  [FULLTEXT]
15.Kreicbergs U, Valdimarsdóttir U. Talking about death with children who have severe malignant disease. N Engl J Med 2004;351:1175-86.  Back to cited text no. 15    
16.Monterosso L, Kristjanson LJ. Supportive and palliative care needs of families of children who die from cancer: An Australian study. Palliat Med 2008;22:59-69.  Back to cited text no. 16  [PUBMED]  [FULLTEXT]
17.Jay SM, Green V. Differences in death concepts between children with cancer and physically healthy children. J Clin Child Psychol 1987;16:301-6.  Back to cited text no. 17    
18.Wolfe J, Holcombe EG.: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000;342:326-33.  Back to cited text no. 18    
19.Contro N, Larson J. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adoles Med 2002;156:14-9.  Back to cited text no. 19    
20.Morgan ER, Murphy SB. Care of children who are dying of cancer. N Engl J Med 2000;342:347-8.  Back to cited text no. 20  [PUBMED]  [FULLTEXT]
21.American Academy of Pediatrics. Child life programs: Committee on hospital care. Pediatrics 1993;91:671-3.  Back to cited text no. 21    
22.Committee on Hospital Care. Child Life Programs. Pediatrics 1993;91:671-3.  Back to cited text no. 22    
23.Masera G, Spinetta JJ. Guidelines for assistance to terminally ill children with cancer: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 1999;32:44-  Back to cited text no. 23    
24.Weithorn LA, Campbell SB. The competency of children and adolescents to make informed treatment decisions. Child Develop 1982;53:1589-98.  Back to cited text no. 24    
25.Hilden JM, Watterson J. Art of oncology: When the tumor is not the target, tell the children. J Clin Oncol 2000;18:3193-5.  Back to cited text no. 25    
26.Lauer ME, Mulhern RK. Children's perceptions of their sibling's death at home or hospital: The precursors of differential adjustment. Cancer Nursing 1985;8:21-7.  Back to cited text no. 26    
27.Spinetta JJ, Jankovic M. Guidelines for assistance to siblings of children with cancer: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 1999;33:395-8  Back to cited text no. 27    


  [Table 1], [Table 2], [Table 3], [Table 4]

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