Still Hoping for a Miracle: Parents' Experiences in Caring for their Child with Cancer Under Palliative Care

INTRODUCTION

Children who have cancer commonly complain of physical and emotional symptoms affecting their quality of life.[12] Meanwhile, parents who have children with cancer feel lost and experience emotional conflict because of an inability to accept the suffering and reality of losing their children.[3] Children with cancer and their family members need comprehensive care throughout the course of the disease and until the end of life. However, they rarely have care which is effective, consistent, timely, and competently fulfilling their physical, emotional, and spiritual needs.[4] It is our belief that by implementing a multidisciplinary approach to palliative care, we can increase the quality of life for children and their families.[5] Palliative care is active total care of patients that addressed to fulfillment the physical, psychological, social and spiritual needs patients and family.[6]

Qualified palliative care can increase the quality of life for children and their families. Although on the reality, palliative care also still have despair,[7] even the feeling of grief in a long time for parents involving palliative care.[8] In addition to noncontinuous implementation of care, ineffective communication and lack of coordination between parents and the palliative team, ineffective symptom management, and inadequate provisions of information are still occurring during palliative care.[9] These issues heavily impact the provision of adequate palliative care for children and their families.

Consequently, nurses need in-depth knowledge about child and family perspectives related to palliative care in order to be able to provide comprehensive and effective palliative care. The quality of palliative care depends on the assessment all dimensions of palliative care based on the patients' and families' perpectives.[10] Since Indonesia has limited studies related to the parents perspectives, this research needs to conduct. Thus, this study aims to explore in-depth parents' experiences in caring for children with cancer under palliative care conditions.

SUBJECTS AND METHODS

A descriptive qualitative phenomenology research design was used. Data collection was conducted between March 2017 and May 2017 in Jakarta, Bogor, and Bekasi and was facilitated by the Jakarta Rachel House Foundation. Ten participants (eight mothers and two fathers) participated in this research. Criteria for participant inclusion were parents who had experience in caring for children with cancer under palliative care conditions where the main therapy had been stopped, parents who were the primary care givers for their children, parents who had good Indonesian-speaking skills, and parents who were willing to be participants and to share their experiences. A purposive sampling technique was used, and the determination of the sample number was based on data saturation.

The 10 participants were aged 26–49 years, with educational backgrounds ranging from completion of elementary school to completion of senior/vocational high school. Of the participants, 5 had an individual child who was already deceased, and five had an individual child still under palliative care. Cancer diagnoses experienced by the children were acute lymphoblastic leukemia, acute myelogenous leukemia, chronic myeloid leukemia, osteosarcoma, rhabdomyosarcoma, medulloblastoma, craniopharyngioma, and teratoma mature.

Data collection through in-depth interviews was conducted under a duration of 39–70 min using interview guidelines and field notes. Data were then analyzed by using the Colaizzi method, where the researchers read the collected data repeatedly, chose significant statements, formulated meaning, and then grouped them into themes and subthemes.[11] This study passed ethical testing by the Ethical Research Committee of Nursing Faculty at the Universitas Indonesia. Data validation was accomplished through credibility, dependability, confirmability, and transferability.

RESULTS

Two themes emerged from the data: still hoping for a miracle and surrendering to God.

DISCUSSION

The theme of “still hoping for a miracle” illustrates how parents still hope for a miracle of God to keep having their children during palliative care. Despite parents being in denial at the onset of their child's palliative care, the hope for a miracle still existed. This is in line with Smith's [12] study, which found that hoping is an effective coping strategy in making peace with chronic diseases and was more often connected to someone's spirituality. Through hoping for the miracle of God, the parents' wish being able to have their children healed from the diseases, to have their children physically or no losing their children, and to have their children happy.

The theme of “surrendering to God” in this study illustrates further how prominently spirituality features in parents during palliative care. Believing in God, praying to God, saying thanks to God, relying on God, and preparing to face the deaths of their children are the forms of surrendering exhibited by the parents in this study. The parents believed in a God that is always available to help them in the face of difficulty, and they fully surrendered to God's mercy about the healing and life of the children. They are trying to do anything for making the children healed though the last result of their efforts is surrendering on God.

While caring for their children under palliative conditions, the parents bring themselves closer to obeying God's command by reading the Bible and doing sholat. The participants stated that in their sadness, grief, and despair, getting closer to God made them feel peaceful and resilient. The research conducted by Hexem et al.[13] also shows the same findings, in that, reading the Bible and praying were the primary spiritual and religious practices performed by the parents during their child's palliative care.

The preparation in facing the death of the children also shows that the parents surrender on God in terms of death. The parents prepared their children to face death by saying and giving support to them to decrease their fears surrounding the possibility of death. This was supported in van der Geest et al.'s [14] research study, where parents feel the benefits of talking with their children and decreasing their children's fear of death. Contrast with other studies, in India, it was shown most parents reluctant to discuss dying with their child in palliative condition.[15] The differences of culture make parents in facing death of their children in palliative care in different ways. The parents in this study further prepared themselves to face the deaths of their children by expressing a wish that their children do not die in pain, which is supported by findings in Björk et al.'s [3] study, where parents prepare themselves and also the children in facing death.

CONCLUSION

By still hoping for a miracle and surrendering to God, the parents in this study show that during palliative care, they cannot be separated from their relationship with God. Nurses are vital to the continuous assessment of parents' spiritual needs and to the facilitation of need fulfillment involving family and religious figures. Facilitating religious activities, such as recitation or church community in line with the religion and beliefs of the parents, can also be helpful. In the future, it would be beneficial to conduct studies implementing nursing intervention methods in order to add to evidence-based practices within the nursing field.