The Indonesian sociocultural contexts related to daily occupations of children with cancer during hospitalisation: The parents’ perspective

Abstract

Background

The sociocultural phenomenon affecting daily occupations of hospitalised children with cancer in a diverse country like Indonesia is thought-provoking and requires exploration.

Objective

This study aims to explore the sociocultural contexts related to daily occupations of children with cancer during hospital admittance from the parents' perspective.

Methods

Semi-structured interviews were conducted with parents of children with cancer who had been hospitalised for two weeks or more. The data were collected at the paediatric ward of “Dharmais” National Cancer Center Hospital, Jakarta. The study uses interpretative phenomenological analysis (IPA).

Results

Nine parents of children with cancer consented to the study. Three interconnected themes emerged as necessary to the sociocultural context among participants. These involve ‘The surrounding human environment as primary encouragement’, ‘Culture and spirituality as the basic standard’ and ‘Activity adjustments as new habits’.

Conclusions

The themes revealed that the daily occupations of hospitalised children with cancer are strongly encouraged by family and social systems in Indonesia, spiritual aspects of the parents and the occupational changes due to the new settings.

Keywords

Socio-cultural context daily occupations children with cancer neoplasm

Introduction

Background

Illness is conceptualised and treated differently through the worldview of various ethnic groups and nations (Helman, 2007; Patel et al., 2015), which is further compounded in children (Karakashian and Mannella, 2018). The World Health Organization (WHO) reports that cancer in children is one of the diseases with globally increasing incidence rates. However, with advanced medical and rehabilitation treatment, the number of survivors has increased significantly (World Health Organization, 2018). According to the WHO’s global annual estimate, 200,000 children aged 0–19 years are newly diagnosed with cancer (World Health Organization, 2019). The incidence of childhood cancer is relatively high in some countries. In the United Kingdom, it is projected at 17.0 per 100,000 children. In Japan, one of the developed countries in Asia, it is 12.7 per 100,000 children. The number of children from the same-aged group in Indonesia is 12.1 among 100,000 children (World Health Organization, 2018). On the one hand, with continuously developing and improving cancer care, treatments and facilities, more than 80% of children diagnosed with cancer can survive and live a healthy life (World Health Organization, 2019). On the other hand, the higher number of survivors means a need for more help to support the survivors and their families in dealing with everyday living demands following their cancer therapy.

The definition of health as the absence of illness (Suls, 2003) has long been dismissed and replaced by recognising the impact of social determinants and sociocultural involvements (Engel, 1977; French and Ayse, 2010; Schoors et al., 2018) on health, well-being and function. The study of sociocultural aspects of health and illness states that sociocultural surroundings play a significant role in how health and unhealthiness are experienced (Badash et al., 2017; French and Ayse, 2010; Schoors et al., 2018). Hence, in contexts with great cultural diversity, consideration must be given to the interaction of sociocultural factors in determining their influence on physical status, psychosocial and occupational issues. Thus, considering the sociocultural contexts related to hospitalised children’s daily occupations from the parents' perspective will assist occupational therapists by illuminating support needs.

Occupation of children with cancer

Occupation is the fundamental core framework of science in occupational therapy. One of the initial and most cited definitions of occupation states, ‘dimensions of culturally and personally meaningful activity in which humans engage that are named in the wordlist of the culture’ (Clark and Lawlor, 2009).

During hospitalisation, children undergoing cancer treatments experience subsequent disturbances in schoolwork, plays, routines and their interactions with the surroundings. These circumstances disrupt the usual pattern of their engagement in occupation and participation. This chapter of life can lead to conditions creating occupational disruption, a state in which an individual is temporarily limited from participation in necessary or meaningful occupations (Whiteford, 2003). Some children may have occupational disruptions present before admission to the hospital due to the illness’s effect on the body, the occupational therapist does a preliminary assessment on the admittance to determine treatment and support goals. The primary focus is to enable the children with cancer re-engage through activity modification and environmental adaptions to participate in meaningful occupations such as studying, playing, sleeping and responding to their friends, classmates and siblings. The common concerns of treatments include (1) training fine motor skills for grasping objects and writing, (2) addressing limitations such as developmental delays, (3) performing daily tasks like praying, eating, grooming, bathing, toileting and dressing, and (4) performing leisure activities, for example, gaming, handcrafting and watching cartoons. Cultural rituals and occupations are also meaningful and affected. For example, prayer/praying is a daily occupation and may need modifications in execution (positioning).

A study on health and function in children with cancer using the International Classification of Functioning, Disability, and Health for Children and Youth (ICF-CY) showed that 40% of the affected children faced daily occupational problems and participation limitation. In other words, four out of 10 children with cancer experienced difficulties with their daily occupations. Several issues were identified: 33% related to body functions, 25% related to the environment and only 2% suffered from problems associated with the body structure (Darcy et al., 2014).

Indonesian context

Indonesia, the world’s largest archipelagic country with a population exceeding 267 million, is globally the fourth most populous and the largest Muslim country. Made up of more than 16,700 islands, it has 514 regions divided among 34 provinces. The country is very diverse: demographically, ethnically, linguistically, culturally and by customs, norms and faiths (BPS-Statistic Indonesia, 2019). Therefore, understanding the sociocultural issues will contribute to occupational therapists' insight to develop sensitive and culturally competent occupational therapy services in Indonesia. Sociocultural diversity has the potential to influence how people from various backgrounds carry out their daily activities.

An earlier literature search through PubMed and Medline conducted by the primary author using the keywords ‘childhood’, ‘children’, ‘pediatric’, ‘cancer’, ‘oncology’ and ‘Indonesia’ identified 27 studies conducted in the area of medical treatment and rehabilitation. Most of them were quantitative studies. Qualitative research on sociocultural issues related to daily occupations of children with cancer in Indonesia is lacking. Therefore, the authors sought to know about these events through the parents’ perception of events. Accordingly, the research question formulated is as follows: What is the parent’s perspective (concerning the Indonesian sociocultural contexts) about the children’s daily occupations during hospital admission?

Methods

Design

Interpretative phenomenological analysis (IPA) is a qualitative methodology selected in this study. It aims to offer insights into how a given person, in a given context, makes sense of a given phenomenon (Smith and Flower, 2009). The authors used IPA because it is in accordance with research investigating the sociocultural involvements and viewpoints of parents of children with cancer as participants. It is a ready-to-use methodology that provides the entire structure (theoretical frameworks, sampling, collecting and analysing the data) in exploring the experiences and perspectives of research subjects. Additionally, the sociocultural context covers the everyday life of the parents who have a position in both the social interaction of humans and as cultural entities. Utilising exploration brought these experiences of culture and social interaction into a unique perspective through IPA. IPA also offers occupational therapists a method for developing deep understandings into parents' detailed meaning-making of their experiences in relating to their children’s occupations and their sociocultural background (Clarke, 2009; Smith and Flower, 2009). Also, parents of children with cancer provide a person-centred, idiographic response for understanding the complex and often ambiguous occupational engagement of children.

A semi-structured interview conducted by the principal researcher obtained in-depth information through a robust empathetic engagement, which supported probing further critical and thought-provoking aspects of the parents’ standpoint with their children’s occupations in the hospital.

Data analysis of this study followed an inductive process of the data gathered and did not follow predetermined concepts as IPA accepts personal interpretations to develop thoughts and themes (Clarke, 2009; Smith and Osborn, 2014). As this study worked with a small sample and wanted to address research questions that are more about parents’ outlook, IPA was an appropriate choice. Atlas.ti software version 8.4.0. was used in organising data during the analysis process. The software helped in arranging and reassembling the qualitative analysis of textual data gained from the interview process. Then, the analysis of the connections and interrelations among the raw data was done manually by the researchers.

Participants

The participants in this study were recruited from the pediatric oncology ward of ‘Dharmais’ National Cancer Center Hospital, Jakarta, Indonesia. The researchers reviewed the process and the informed consent of the parents willing to participate. To obtain precise and objective information from research subjects in the interview process, the researchers set the following inclusion and exclusion criteria. The study included parents who had been at the hospital with their child for 2 weeks or more and did not have verbal communication problems. Excluded were non-Indonesian parents and the parents of children recently admitted to the hospital (less than 10 days). Seven mothers and two fathers of children with cancer consented to participate in the study. The demographic characteristics of the participants are presented in Table 1.

Table 1.

Demographic characteristics of the participants.

Name	Sex	Age	Occupation	Religion	Origin	No._C	Diagnose_C	Age_C	DoS
Dian	F	36	Housewife	Islam	Central Java	3	Glioma	8	43
Sari	F	40	Housewife	Islam	Central Java	2	ALL	16	25
Ketut	M	38	Unemployed	Islam	Jakarta	3	AML	16	156
Emi	F	34	Housewife	Islam	Bengkulu	3	Pineal tumours	4	110
Susi	F	40	Housewife	Islam	Banten	5	ALL	16	14
Rani	F	46	Housewife	Islam	West Java	3	ALL	14	15
Moeji	F	39	Housewife	Christian	NTT	2	ALL	12	18
Lia	F	35	Housewife	Islam	West Java	3	AML	10	22
Rosid	M	48	Unemployed	Islam	West Java	4	Brain tumours	8	53

Name = participant’s pseudonym; F/M: female/male; C: diagnosed child; No._C: number of children within the family; DoS: duration of stay from current admission to the interview date (days); NTT: Nusa Tenggara Timur; ALL: acute lymphocytic leukaemia; AML: acute myeloid leukaemia.

Data collection

The researchers developed a semi-structured interview guideline. Data were collected over 1 month: November, 2018. Subjects were interviewed to explore their point of view when accompanying their child. Each interview took about 30–45 min. The participants were asked about demographic information and personal experiences related to their children’s daily occupations, which contained (1) the child’s general condition (physical and psychological/emotional), (2) how their child performed his/her self-care at the hospital, (3) how they support/assist their child’s activity/habit, (4) the reason they helped their child and the child’s response to the assistance, (5) the range of their family/relatives’ support to them and their child, (6) whether the neighbourhood community supported them and/or their child, and if so, how, and (7) how they collaborated with health professionals in assisting their child with the treatment and recovery process.

Interviews were conducted in a private and secluded room, where the participants could answer freely without being overheard by their child or others. Voice data were recorded on a digital voice recorder and transcribed verbatim afterwards. These transcripts and records served as the raw data for the analysis.

Process of analysis

Initially, the nine participants' interview transcripts were read several times by the primary author to capture the main ideas arising from the discussions and be familiar with the situations (Pietkiewicz and Smith, 2012). For analytic procedures, the researchers developed a process of ‘initial commenting’ or ‘initial noting’. The authors wrote the initial analytic observations on the data item (interview transcripts). Critical statements in the transcriptions were highlighted, quoted and coded along with relevant comments, followed by collecting similar codes into a code group. This process then continued with another grouping of similar codes into larger code groups. The networks of these code groups eventually became themes.

Afterwards, interpretation aimed to obtain a comprehensive understanding of the parents' perception and involve researchers’ knowledge of the background sociocultural contexts and children with cancer’s occupations in the hospital (Clarke, 2009; Smith and Flower, 2009; Smith and Osborn, 2014). Similarly, ideas of the preliminary themes were linked and analysed inductively to form a network of themes. This procedure was applied consistently to data obtained from all parents. Finally, the network themes were translated into narrative interpretation, explaining in more detail the data and illustrating them with extracts from transcripts of the participants’ interviews (Treggalles and Lowrie, 2018). Consultation among authors also occurred in every process of data collection and analysis.

Ethical considerations

Ethical approvals for this qualitative study were obtained from both the Research Ethics Committee of Tokyo Metropolitan University, Japan (Approval number: 18060) and ‘Dharmais’ National Cancer Center Hospital, Jakarta (Approval number: 10005/2018). All participants were explained the research plan, the protection of personal information, the recording process, the storage and security of the data provided and the publication plan of this research. They all consented to participate in this study.

Results

The analysis process is illustrated in Figure 1.

Figure 1.

The process of data analysis.

Primarily, a total of 304 quotations were highlighted from nine interview transcriptions. Then, 47 codes were generated based on the similarities and grouped into five code groups. Next, preliminary themes were built based on interrelated code groups. Finally, from these interrelated networks, the parents’ perspectives concerning sociocultural contexts of the children’s daily occupations were categorised into three main themes: (1) ‘The surrounding human environment as primary encouragement’, (2) ‘Culture and spirituality as the basic standard’ and (3) ‘Activity adjustments as new habits’. These themes were elaborated by subthemes as found in Table 2.

Table 2.

Emergent themes from the analysis.

Themes	Subthemes 1	Subthemes 2
1. The surrounding human environment as primary encouragement	1.1 Direct support from family, societal and health professionals	1.2 Indirect support from relatives and the community setting
2. Culture and spirituality as the basic standard	2.1 Holding the cultural values	2.2 Relationship to religious beliefs
3. Activity adjustments as new habits	—	—

Theme 1: The surrounding human environment as primary encouragement

The surrounding environment’s support aspects came from family, community/neighbours and health professionals at the hospital directly and indirectly. Direct support referred to the positive reinforcement addressed to children with cancer and which impacted their daily occupations at the hospital. Indirect support led to a good influence on the patients’ daily occupations even though the positive reinforcement was not directly shown to the children with cancer. For this reason, the authors group them into two subthemes.

Subtheme 1.1: Direct familial, societal and health professional support

The participants conveyed that direct support from close relatives was very motivating to their child to perform the daily occupations, for example, eating and taking medicine, as Moeji shared:

His grandmother always said (by telephone): ‘You have to eat a lot, take medicines, drink lots of water’. And he replied: ‘Yes, Grandma. Yes, Grandma’. It was a call from his grandmother, who always encouraged him because he is close to his grandmother, and he is pleased to hear his grandmother’s voice. (Moeji)

For this participant, when her son got a call from another family member, this event delighted and motivated him. She also was happy because after receiving the telephone call, the child was more eager to eat.

Lia also described happiness and support between siblings. Her older daughter could visit the hospital only on weekends. The weekend visits also seemed to affect her sick child positively because it was a regular source of happiness as before. The sibling’s visit enabled the child with cancer to engage in an interactive form of playful activities than their usual solitary play at the hospital:

Her older sister comes here (to the hospital) every weekend or on school holiday. She (the sick child) is happy and always plays with her sister. Meanwhile, her eldest brother doesn’t want to come here, but he stays at home and cleans up the house. (Lia)

Discussing the child’s support from the school, Moeji stated it came from her son’s school friends. This response was also vital in motivating the child to recover and return to school. Moeji mentioned the benefit of information technology and communicating with her son’s schoolmates from Jakarta to Kupang (distanced >2600 km) via video call:

From the classroom, his schoolmates made a video call, and they together said: ‘Get well soon P (mentioning his name), we miss you here in Kupang...come back soon!’ He was happy and smiled widely at his classmates, and he also seemed to miss his friends. That motivated him to recover and return to school. (Moeji)

All participants reported the importance of good partnership and collaboration between parents and health professionals in supporting their child’s occupational engagements. For example, Sari said her daughter was more willing to eat when the doctor, whom she likes to joke with, orders her to eat:

When her doctor was here, I told the doctor that she didn’t want to eat, and the doctor said: ‘You need to eat or I will use NGT (Naso-Gastric Tube) to deliver nutrition to your body’. After the doctor left the room, she said to me: ‘Ma, I want to eat’. (Sari)

Subtheme 1.2: Indirect support from relatives and the community setting

All participants had more than one child. Other close family members were helpful by taking care of the participant’s children left at home. The first two authors categorise this kind of encouragement as indirect support. Even though other family members did not provide direct care at the hospital, the participants felt that their roles were significant because participants' school-going children could not be left alone at home. Susi expressed the importance of their help:

His grandmother has been staying at my home, taking care of my other child. Fortunately, she lives close to my home. (Susi)

In Susi’s case, her other four children at home were entrusted to her grandmother’s care. Even though they did not live in the same house together, their houses were conveniently close. Therefore, their grandmother could take care of the children’s daily needs and leave the parents to devote their full time to their sick child’s care.

Most participants explained the helpfulness of social support from those outside their family. Ketut discussed the society’s support (residents of the village where he lived) of the neighbourhood community. They paid him visits at the hospital and gave aid out of a voluntary fund collected by the community, called RT-RW (Rukun Tetangga-Rukun Warga/sub-village neighbourhood) in Indonesia. The fund eased the financial burden on members in need due to calamities. He got this financial support to meet his child’s needs during hospitalisation, such as buying favourite food that the hospital could not provide:

I can buy extra food for her. She doesn’t like some of the foods here (provided by the hospital). So, I buy her favourite meals from outside. (Ketut)

Participants whose children were still of school age said they also received empathy and comfort from the schools. Rani informed that she got a call from her son’s teacher saying that the school had flexible regulations for sick students admitted to hospitals, such as providing suitable arrangements to take examinations:

Indeed, her teacher said, ‘Don’t think about the school activities, just focus on your kid’s treatment and wellness first. When the exams come, the headmaster will make a policy’. (Rani)

Rani emphasised that school activity was one of the daily occupations facilitated by a social setting while her son was in the hospital. The flexibility in the school’s regulations was beneficial non-material support for the parent in prioritising her child’s daily occupation while he was in the hospital.

Theme 2: Culture and spirituality as the basic standard

The participants’ background of fundamental beliefs caused them to be with their child in the hospital at all hours. Some reasons expressed by participants were that they were responsible for their children, their values required making the best efforts for the sake of their child’s recovery, and they believed that parents were fully responsible for children and accompany them when they were sick. They believed the latter to be a command from God. To categorise these reasons, the authors divided them into two subthemes.

Subtheme 2.1: Holding the cultural values

In Indonesia, children are considered to be the ‘blood and flesh’ of their parents. Their love is tied to each other at all times. The ethos says parents’ love for their children has no limits. When a child was sick and hospitalised, parents should be as close to the child as possible and not entrust them to others’ care. Many parents expressed the same sentiment as that of Rani:

It is parent’s obligation to take care of the children. It is my responsibility as her mother. I love her. (Rani)

One of the local cultural beliefs of parents is the willingness to ‘slam the bones’ for their child’s recovery. This phrase means that parents will do whatever is best for their children. Rosid said that he was doing his utmost for his child. He also offered encouragement until his child would perform the occupations independently:

It is important to provide the best needs/assistance for our children. As you know, that’s our principle. (Rosid)

With positive reinforcement from parents, children with cancer also showed stronger attachment to their parents, who then felt more motivated and emotionally connected (a mutually motivating emotion) with their child. A local idiom says, ‘yang lemah membantu yang kuat untuk lebih kuat’ (the weak strengthens the strong to be stronger):

I see her spirit and enthusiasm, and I always feel more motivated. (If) She is strong (like that), I can be stronger. (Emi)

Subtheme 2.2: Relationship to religious beliefs

During the interviews, the participants stated they followed their sacred religious principles in their daily lives. They attributed their experience as coming from God. As a Muslim, Dian believed that all events are predetermined and, therefore, inevitable. She thought that God controlled everything and would make it all easier:

Religion rules require us to take care of children. Yes, take care of children. That’s the point. Religion mentions caring for children. So, pray to God, may He ease all of this process. (Dian)

Dian also encouraged her son to undergo the treatment process as something she believed sincerely as a Muslim would make a difference:

Fighting to deal with the disease is like a holy war in Islam. I encourage him to pray for Allah to grant wellness and recovery. (Dian)

In Islam, the religion of most members of the Indonesian society, all problems humans encounter come from Allah. Despite this, the challenges are meant to strengthen their relationships with Allah and always be close to Him. A Christian subject also underlined that what was happening is God’s intervention. The Christians believe that as long as the person has faith, God will not refuse to heal their child. Parents relate religious teachings to their everyday lived experiences.

The above parental statements, interpretations of their religious beliefs and teachings, and experience guided their actions for what they were facing now. No matter the parents' faith, these values were critical in all their lives and some beliefs related to what was preordained by their religious teachings.

Theme 3: Activity adjustments as new habits.

The participants’ experience of assisting their sick child in daily occupations became a part of their everyday life’s challenges. When children with cancer are hospitalised, due to their physiological/physical condition, many of them had to rely on others’ assistance (parents and nurses). They needed the parents’ presence to help them do most of their daily routines in different ways from when they were healthy. Moreover, when the children had to perform the daily activities with attached medical equipment, caregivers played an essential role in assisting them. Dian explained:

Every day I help him to eat, take medicine, vaporise with a nebuliser, drink through the NGT (Naso-Gastric Tube), clean the tracheostomy, change surgical wound dressing, change clothes, wipe his body, etc. (Dian)

The above activities described by Dian were atypical for her son as he did not have to endure these routines when he was healthy. Hence, while in hospital, she and her son learned and performed new activities, such as nebulisation, using the NGT and changing clothes with attached medical equipment. They could not avoid it because they could not rely on just the nurses to do them. Hence, Dian had to adjust (and learn from the nurses) to perform these special activities for her son.

Physical conditions also became factors that needed special consideration, which affected paediatric cancer patients’ daily routines directly, whether directly from the disease or indirectly as necessitated by the nature of the treatments such as chemotherapy, surgery and radiation. Lia mentioned this:

… actually, He can walk to join the drawing/painting activity. But, because his thrombocyte number is low, nurses advised limiting his physical activities and that he should lie down on the bed. (Lia)

In terms of adjusting to the hospital’s routine demands, participants said that they remained there to help their child carry out their daily activities, even with some limitations. For example, religious activities such as praying five times a day could not be abandoned. Muslims must perform their prayers in a standing position, face Mecca’s direction and make many different movements. However, these might be adapted to be completed even in a lying position on a bed. Dian said:

I said to him: ‘You may pray while lying down on the bed, let’s pray together’. (Dian)

Generally, participants emphasised that lying in bed should not be an obstacle in performing daily livings for their child. Although they experience changes in physical conditions due to treatment and care (chemotherapy or radiotherapy), the presence of parents, relatives, social environment and relationships with health professionals in hospitals, directly or indirectly, makes them carry out routine occupations in the hospital meaningfully.

From all themes and subthemes that arose above, social support from relatives helped children’s occupational choices in praying, playing, eating and school activities. Concerning the spiritual principles of their parents, children are more receptive to undergoing treatment in hospitals, including adjusting some of their demands to help themselves and participate in the hospital environment. These findings confirmed the engagement of dimensions of culturally and personally meaningful experiences.

Discussions

In general, the findings delineated the extent to which Indonesian parents' sociocultural characteristics motivated them to assist their sick child in performing daily occupations (self-care, school, play, etc.). Kars et al. studied the importance of attending to a child with cancer while in hospital. They identified parental care and supportive involvement of parents with their child in the hospital work as a motivator, emotional supporter, which contribute to the child’s willingness to do routines activities (Kars et al., 2008). In this context, family ties in Indonesian culture demonstrate a great sense of interdependence, motivating family members to take on precise tasks and roles in helping the patients’ parents (Effendy et al., 2014). The Indonesian family structure defines its cohesiveness and the role and function of each family member. This interdependence is most apparent when parents have to leave home to be with a sick child at the hospital. When this happens, other members of the extended family provide extraordinary encouragement directly and indirectly. This phenomenon bores out previous evidence. When one family member had cancer, all other family members would also come forth to bear the situation’s burden (Effendy et al., 2014; Yi, 2009). The results were also compatible with other Indonesian and Malaysian studies on the essentiality of family members' perceived roles in caring for cancer patients during their hospitalisation (Anggraeni and Ekowati, 2011).

The other cultural aspect of the family system, such as entrusting children’s care to relatives, is illustrated by the two previous examples. This custom usually prevails with children whose parents are at work on weekdays from morning until evening. Other relatives, who can look after the children until their parents come home from work, do so. In this study, participants left their healthy children ‘24/7’ with their relatives and accompanied their sick children to the hospital, often at great distances, and facilitated their daily activities. Equally impressive was the highlighting of the social behaviour of the surrounding human environment. Everyone, from the neighbourhood community to the school society, helped the child. This dynamic and responsive social relationship made a positive contribution and fulfilled a critical function of supporting the children’s daily occupations and parents. These findings were consistent with those from a study of the experience of Indonesian parents of children with leukaemia, which stated that 57% of the parents needed social support (Kars et al., 2008).

Similarly, the parents' religious views were also essential. The participants revealed their values and beliefs as necessary spiritual support while helping with their child’s occupations. Previous research also reinforced the religious context, which showed that during hospitalisation for cancer care, the parents’ relationship with God was not severed (Nafratilova et al., 2018). Consequently, occupation-based care delivery in the field must be sensitive to the potential dissimilarities between the providers and their clients’ spiritual and religious beliefs (McColl, 2011). On the other hand, spiritual principles of various faiths generally convey the same message, doing whatever is best for their child’s recovery and self-dependence and asking for God’s assistance.

The hospital is a new environment for children and their parents. Even though they are often hospitalised to receive cancer treatment, they both must adjust each time to the hospital environment and its rules and routines. Examples of general regulations in hospitals relate to children’s occupations such as wearing the hospital uniform, following the nutritionist’s diet and meeting their family or friends only during the visiting hours. Parents must alter some of their interactive habits due to their child’s physical condition and medical equipment/devices attached. Special handling is also required for such activities as urinating and defecating, for which the use of a catheter or diaper may be necessary. These examples illustrate how a child with cancer has alterations to their usual daily activities while in the hospital and require adaptations or adjustments to preserve their dignity and promote their self-efficacy. A study conducted by Peikert also stated that the family as a whole had to adapt to cancer-related changes (Peikert et al., 2018).

Parents provided extended details of the personal meaning of their caregiver activities to their hospitalised child. They expanded the knowledge base of occupational therapists in delivering additional environmental support in keeping with cultural practices. Overall, the general findings related to what the WHO stated: ‘If actions are to be effective in the prevention of diseases and the promotion of health and well-being, they must be based on an understanding of culture, tradition, beliefs, and patterns of family interaction’ (World Health Organization, 1982).

Implications

Research implication

This preliminary research on the sociocultural perspective can prove useful for occupational therapy researchers to enrich their theories and assumptions in various sociocultural environments and identify new questions.

Clinical implication

Firstly, this study reaffirms that the parents of children with cancer need support from the surrounding human environment to help them assist their children’s daily activities in the hospital. It is essential to ask directly about their needs even though they seem capable of providing care to their child. Secondly, the involvement of relatives, health professionals and the community all contribute to optimising hospitalised children’s daily occupations. Indonesian culture and hospital environments expect a reciprocal interaction, but other cultural settings may require more facilitating institutional policies and education sessions to gain good-natured, supportive care relationships. Thirdly, occupational therapists need to pay more attention to the fundamental beliefs of the parents/caregivers when supporting the child’s occupations. Although parents experience various psychological situations, in the end, it is the spiritual factor (with different religious backgrounds) that strengthens them to go through it all. Fourthly, clinicians need to continue promoting the engagement in meaningful and functional activities of children with cancer while in the hospital by using more environmental adaptations and technology.

This sociocultural study can promote change and discussion about clinical interactions, management strategies and interventions by occupational therapy practitioners working in the paediatric oncology area.

Conclusions

The experiences of nine parents accompanying their children with cancer to the hospital revealed that support from the surrounding human environment, family and community system in Indonesia is highly essential. Also, parents’ spirituality underlies their effort to adapt to new demands and foreign hospital habits to assist in their children’s occupations and care. These discoveries help answer the research question: understanding parents’ perspective about the daily occupations of children with cancer within Indonesia’s sociocultural contexts.

Limitations

This sociocultural qualitative study was conducted in Indonesia and involved a small number of purposive research participants. It is recommended that future research be carried out with larger and randomised subjects from more heterogeneous sociocultural backgrounds and to be conducted in other countries as well. Additionally, this research is a cross-sectional study. A longitudinal study can be conducted within the same theme in the future to capture more comprehensive sociocultural contexts affecting the daily occupation of cancer children throughout their treatment and recovery in Indonesia.

Key findings

1. The human environment, social and community systems in Indonesia encourage and support families of children with cancer.

2. The culture and spiritual background of the parents inspires effort in assisting their children’s performance of occupations.

3. The parents of children with cancer are forced to adapt personal routines to the demands of the hospital setting, and as a consequence, new habits are formed.

The study has contributed to occupational therapists in the areas of education, research and clinical services to always take into consideration the (typical) non-physical environmental factors underlying human occupations.

Footnotes

Acknowledgements

We thank all the parental participants in this study, the hospital director, doctors, nurses and occupational therapy colleagues at “Dharmais” National Cancer Center Hospital for their participation and support. Also, for the prayers and valuable encouragement of Ibuk Siti Riswahyuni, Noviyantie, Alifia Darin, Naura Fatin and Janeeta Nadhif.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

Research ethics

1. The Research Ethics Committee of Tokyo Metropolitan University (approval number: 18060). Date of Approval: October, 2018.

2. “Dharmais” National Cancer Center Hospital, Jakarta (approval number: 10005/2018). Date of Approval: October, 2018.

ORCID iD

Cahya Buwana

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