Background
Chronic non-communicable diseases such as cancer pose a major, ongoing public health problem and are responsible for 60% of deaths in Southeast Asia [
1]. These conditions are also strongly correlated with poverty. Surveillance of these diseases and their risk factors needs to be improved, and health care systems must be strengthened to address the needs of the patients through primary health care and appropriate referral systems [
1].
Similar to other Southeast Asian countries, Indonesia faces a range of challenges in providing health services for the poor. These include unavailability and unaffordability of services, as well as lack of adequate staff, transportation, and equipment [
2]. Many patients in Indonesia tend to postpone cancer treatment because of their lack of knowledge on treatment options, insufficient financial resources, the side effects of treatment, and the paternalistic approach of health professionals [
3]. The survival rate for cancer patients in Indonesia is resultantly lower compared with that of other Southeast Asian countries [
4,
5].
Although a universal health insurance system has been in place in the country since 2005, it has not worked as well as planned [
6,
7], and economically disadvantaged patients still typically have to rely on family members to care for them rather than seeking professional treatment [
8]. Unsurprisingly, wealthier patients generally tend to have better treatment outcomes than financially disadvantaged ones [
9].
In Indonesia, strong family bonds underpin the high degree of familial involvement during patients’ care and hospitalization [
10]. Nurses assume important roles in activities pertaining to daily living, physical, spiritual, social, psychosocial, autonomous, and financial aspects during periods of hospitalization. It has also been reported that physicians primarily focus on physical symptoms, and that supporting individuals such as social workers and volunteers play a largely insubstantial role [
10]. At home, the family provides the majority of care, mostly with no expert support from visiting nurses, physiotherapists, or occupational therapists.
Indonesia still has a lack of formal institutions to support patients with long-term conditions, as seen in the absence of hospices and respite care. Therefore, disadvantaged patients with terminal illness are typically cared for at home by family members [
8] who generally have little or no training in provision of basic care. The lack of necessary knowledge and skills may cause family caregivers to have a lack confidence and feelings of uncertainty, which can lead to unease and anxiety [
11]. Family caregivers of patients with advanced stage cancer may have similar experiences [
12]. Basic skills training (BST) for family caregivers is therefore crucial.
Aim of study
The research question underlying the present pilot study pertained to the effects that BST for family caregivers had on cancer patients’ quality of life (QoL). Using two-tailed testing, an intervention was tested to determine how BST affect the QoL of palliative cancer patients.
Discussion
The aim of the current study is piloting and testing an intervention given to the family caregivers on the quality of life of palliative cancer patients. As indicated in the
Results section, there were several items on the QoL scale that increased significantly after intervention, namely, global health status/QoL emotional and social functioning, as well as seven items on symptoms and single items, namely, fatigue, pain, dyspnea, insomnia, appetite loss, constipation, and financial issues.
A positive impact of intervention may result for several reasons. First, although McMillan and Weitzner (1998) suggested that the QoL of patients in terminal condition decreased mostly because of declining physical functioning, while their social and spiritual functioning were relatively high [
17]. However, improved global health status/QoL of patients in the present study may relate to emotional and social aspects that were facilitated during the intervention.
Second, the substantial increase of emotional and social functioning may be attributable to the intervention being developed mostly to enhance family caregiver involvement in palliative patient care [
18]. Being together with close friends and family members is possibly the most important coping strategy for individuals facing impending death from cancer [
19]. Providing constructive social support is also proven beneficial in reducing pain and lowering the number of depressive symptoms [
20]. As participants in the current study were mostly immobile, family caregivers might become the crucial source for social support [
21]. Provision of basic nursing care likely provides the opportunity for social conversation, which helps keep the patient engaged in family life. Emotional support also can be enhanced by involving the patients as active participants, as this involvement helps maintain the patients’ dignity [
22] and may enhance their personal sense of meaning through active engagement with palliative care providers [
23,
24]. During the training, the nurse educators encouraged the family caregivers to involve the patients in their own care as much as possible.
Third, it is also possible that providing comfort measures, such as changing their positions and improving their hygiene, helps patients reduce focus on their physical discomfort and makes them more capable of staying socially and emotionally engaged [
23]. From a palliative care perspective, most patients consider self-esteem and personal image to be important aspects. They want to stay physically clean and free from odors and bodily fluids, and want to have a normal appearance despite their being in the dying process [
25].
In summary, most symptoms declined after an intervention given at a time when terminal patients tend to suffer a decline after hospital discharge. These improvements can be linked to the procedures provided in the intervention in the current study, such as showering, hair washing, feeding, assisting with toileting, physical repositioning, and oral hygiene. The latter is especially important in countering side effects of chemotherapy and radiation, such as dry mouth and decreased appetite [
26].
A previous meta-analysis showed that interventions given to family caregivers of patients were divided into three types: psycho-education, skills training focused on coping and problem solving, and therapeutic counseling [
27]. The study made no mention of skills training, which provides essential information for practical steps in handling routine daily living activities and personal care. One reason for this difference in protocols may be the meta-analysis’ being limited to developed countries. Therefore, interventions conducted in the current research are considered more appropriate for the context of this pilot study, where many terminal cancer patients live out their life at home with their family as a palliative care provider, as is very common in Indonesia and much of Asia.
Family caregivers in Asian countries generally stay with the patient constantly. They are usually willing to provide any type of palliative care necessary. When the patient is staying at home and lacks ability to complete daily living activities, most family caregivers are not equipped to handle the challenges involved in assisting them [
27]. Asian patients may also feel more comfortable receiving help from their own relatives. The current study used an educational package consisting of an instruction manual and informational video, along with demonstrations by nurse educators. The video was added to provide visual demonstration and make the manual’s instructions easier to comprehend. Family caregivers can refer to the manual, which contains detailed explanation and pictures, when they need more information. Recent research on similar interventions using only manuals showed that health professionals used this as a complementary aid. Health professionals shared a variety of experiences in palliative care, and stated they were more comfortable using their own ways of providing information [
28]. Therefore, an intervention’s success may vary depending on the innovations health professionals produce.
Strengths and limitations
The current study measured the impact of family caregivers’ skills training on patients’ QoL, as there is a lack of evidence about specific nursing education interventions in this area [
27], While limited by the small sample patient population in this pilot study (
n = 30), the results are unique because there are few, if any, studies that directly address intervention protocols for the palliative care providers of terminal cancer patients from low- to medium-income countries [
29]. However, a positive impact on QoL through palliative care has been demonstrated [
30]. Our study was valuable because, to our knowledge, this was the first Indonesia-based study that attempted, by using an instructional module with a manual and supplemental video, to provide basic skills training for family caregivers of palliative cancer patients. The intervention also attempted to combine provision of an educational package with direct teaching sessions, and set up the follow-up at home to further encourage the family caregivers.
The main limitation of the present study was the absence of a control group. However, given the sensitive nature of the topic of death and dying, and the scarcity of research in the area of palliative care in Indonesia, a decision was made to delimit this initial study in order to assess acceptability of the outcome measures to this vulnerable population. Completion of the advance and follow-up questionnaires did not appear to cause any distress for the patients or their relatives. This opens the door for the next stage of investigation, which would be a randomized controlled trial of the intervention for palliative care with terminally ill cancer patients in Indonesia, or in other Southeast Asian countries with similar conditions.
Conclusions
The present study provides essential data, which will serve as a basis for subsequent investigations of the provision of palliative care in developing countries. It is recommended that a larger-scale study with the addition of a control group be conducted to further delineate the benefits of provision of BST to family members of cancer patients. Because the interventions and teaching aids herein were simple and affordable, it is also recommended that similar studies in urban, suburban, and rural areas be conducted to investigate differences in acceptance of the program. Given that financial aspects are one of Indonesians’ main concerns, it is recommended that they also be taken into account in future research in an Indonesian setting. Finally, prior to any randomized control trial, it is suggested that psychometric adaptations are made to the EORTC QLQ C-30 to accommodate the economic and cultural sensitivities of terminally ill Indonesian patients, and to facilitate effective interpretation of the scores.
Acknowledgements
The authors thank patients and family caregivers for their study participation. The authors also thank the team of nurse educators for their support. Furthermore, the authors thank Dr Kathy Ahern, PhD for her advice in the manuscript.