Experiences of implementing a coping mechanism for the elderly who face chronic diseases while living with the family: a phenomenology study

Bahtiar Bahtiar, Junaiti Sahar, Wiwin Wiarsih

aDepartment of Nursing Science, Faculty of Medicine, Mulawarman University, Samarinda 75123, Indonesia

bDepartment of Community Health Nursing, Faculty of Nursing, Universitas Indonesia, Depok 16424, Indonesia

Abstract: Objective: Physical and psychological stress causes harm to the health status of the elderly with chronic diseases. This study aimed to understand coping mechanisms of the elderly with chronic conditions who live with their family. Methods: This study was conducted using a descriptive phenomenology method from the experience of 13 older adults with chronic disease. The study processes were interviewed, tape recorded, transcribed, and explored from the transcripts using Colaizzi’s descriptive phenomenological method. The steps of the descriptive phenomenology process are bracketing, intuiting, analyzing, and describing. Results: The coping mechanisms used by the elderly with chronic diseases are (1) the behavioral focus coping ways by doing sports, and physical activities; (2) Focus on spirituality has been implemented by fasting, chanting, dhikr, and prayer; (3) The cognitive focus by working on hobbies or habitual activities and helping each other; (4) The social interaction focus was by interacting with friends, family, and neighbors. Conclusions: This shows that elderly adults with disease conditions try to adapt various forms of coping mechanisms, which positively affects their psychological state. Families which have elderly with chronic diseases are expected to provide nurturing and psychological support to them so that the elderly can consistently apply coping mechanisms to overcome and tackle chronic diseases. Understanding the coping mechanism implementation of the elderly who have chronic diseases by their family can guide health specialists in designing psychological and spiritual approach interventions.

Keywords: chronic diseases · coping mechanism · elderly · family caregiver · Indonesia ? Shanxi Medical Periodical Press.

1. Introduction

An increased number of older adults experience several changes such as various aging changes that lead to chronic diseases. Chronic disease is a disease characterized by an illness which is suffered for a long time. The disease’s progress is slow, irreversible, latent, and leads to a disturbance covering all aspects of human life. Besides, chronic diseases require supportive services, self-care, and bodily functions and cause disability.1,2Therefore, chronic diseases can affect individuals’ health status, especially on psychological aspects.

Chronic diseases in the elderly have an impact not only on health but also on their psychological state. The results showed that low levels of spirituality were accompanied by depressive symptoms in the second year of the elderly with chronic illness.3The increase in severe chronic diseases can abandon the elderly, which is influenced by the lack of social support.4,5Loneliness in the elderly has an impact on their physical health.6No motivation regarding self-management has a significant impact on older women with chronic diseases.7Depression experienced by older Korean people is associated with chronic illnesses.8The risk of suicide is closely related to arthritis and kidney failure in the elderly.9Therefore, individuals who were suffer due to chronic disease will find it challenging to realize spirituality. One of them is the element of relationship with others or social relations.

Social relationships are a critical element in spirituality, especially in the meaning of life. Social support is one of the essential aspects that are needed to support the elderly with chronic diseases. Social support for the elderly becomes a supporting aspect of achieving wellness status. Welfare, widowed and chronic diseases are related to social support provided to the elderly.10Positive reinforcement from the closest person like a spouse can reduce depression in the elderly who have multiple chronic desiases.11Also, the elderly with chronic illness are often stigmatized, and these conditions symbolize weakness of the elderly, which ends in denial.12Therefore, the elderly should be physically and mentally assessed; the size of social support also significantly impacts the state of the elderly.13

Previous studies have explained the psychological and social aspects of chronic disease conditions experienced by the elderly. Disease progression in the elderly will increase symptoms that affect physical, psychological, and social aspects. However, not much information has been obtained in previous studies about the experience of elderly with chronic diseases in Indonesia, especially regarding how the coping patterns are applied by the elderly who suffer with chronic illness. Therefore, the purpose of the study was to explore how the elderly who suffer with chronic disease implement coping mechanisms. The objective of the study was to understand the elderly with chronic diseases, especially their coping ways to deal with a chronic disease condition.

2. Methods

2.1. Design

This research uses the descriptive phenomenology qualitative method.

2.2. Population and samples

This study population included elderly with chronic diseases living in Makassar City, South Sulawesi Province. Participants (1) suffering from a chronic illness for at least 2 years; (2) who can express about their life experiences; and (3) who are able to speak in Indonesian are included in this study. Participants (1) who suffer from hearing and speech disorders and (2) who have mental disorders which makes it difficult for them to communicate when conducting interviews cooperatively are excluded.

This study sample consisted of 13 participants aged 60-78 years. The participants included in this study had chronic diseases and aged between 2 years and 29 years because researchers wanted to acquire diverse information based on the duration of the illness.

2.3. Intervention procedure

The purposive sampling technique determined participants in this study. Researchers collected data of elderly with chronic diseases who live in the Rappokalling subdistrict of Tallo District, Makassar City, from local health cadres. However, data of the elderly from cadres did not determine the duration of chronic illness; so, the researchers used the snowball sampling technique, which was conducted in a chain pattern from one participant to another based on the study inclusion and exclusion criteria. The researcher visited the participant’s house before interviewing to make sure that the participant met the inclusion criteria. The researcher also conducted an initial assessment, gave an initial explanation of the study, and issued a time contract during the first visit. The number of participants recorded from two health center units is 20. Three people refused to participate in the study because they felt ashamed to be registered and interviewed. Two older adults did not meet the inclusion criteria because they were not fluent in Indonesian. Saturation of data was achieved in the 13th participant.

The method used in this study is an in-depth interview with semi-structured interview techniques. The technique aims to describe the meaning of the experiences of several individuals that correspond to the phenomena studied. Researchers provide participants with the opportunity to express their feelings and naturally guided them by interview guidelines. Then, researchers conducted interviews between 30 min and 45 min. Researchers did not give opinions, criticisms, and evaluations during the interview. Researchers use questions from interview guidelines to help focus on interviews if needed. Researchers use open-ended questions and attempt to understand phenomena based on participants’ perspectives. During the interview, researchers exhibited open, empathetic and participatory behavior.

Researchers conducted interview trials on six older adults. The trial of three older adults was conducted in Tanjung Priok, North Jakarta, while that of three other older adults was conducted in Rappokalling village of Makassar City. The trial ensured the quality of research, and the researchers were the main component of the study. The results of interview trials obtained by some seniors do not understand the questions asked, and the elderly often answer questions outside the context of questions asked by researchers, so researchers need to improve the ability to clarify questions during the interview process. In addition, the researcher and the supervisor make modifications to the question interview guidance.

A voice recording device was used to record conversations during in-depth interviews. The voice recorder has MPEG-1 audio player 3 (MP3) format is a digital audio format with good sound quality so that the potential for lost sound can be minimized. The specifications of the voice recording device using the ICD-PX440 type are equipped with a battery life of 1.5 V × 2 with clear sound quality. This tool has a maximum time in recording 128 kbps. Handycam is used to record participants’ non-verbal expressions and become supporting data to obtain non-verbal expressions more accurately. Specifications for Handycam tool is MPEG 4 audio video coding (AVC) format. This tool is assisted by a three-foot tripod that serves as a buffer during video capture.

2.4. Data analysis

Thematic analysis of Colaizzi was used to analyze the transcription data. We used transcription, reading, formulating codes and labels, constructing categories and themes, and formulating the basic structure of phenomena and research results for validation.14Also, we conducted anonymization for every participant in this study.

2.5. Technique for trustworthiness

The researcher applied member checking result analysis data by giving feedback about data of research. Then, the researchers conducted peer debriefing to discuss and review planning, collecting, analyzing, and composing a research report. Inquiry audit was conducted by involving an external examiner’s thorough and detailed review of data and documents.

3. Results

3.1. Demographic data of participants

This study includes 13 older adults aged 60-78 years who had chronic diseases (Table 1). The majority of education levels of participants are illiterate (30%) and elementary school (40%). Participants who reported their jobs as housewives were 70% in total. Then, all the participants belonged to Islam (100%). The duration of illness was 2-10 years (77%), 11-20 years (15%), and 21-30 years (8%).

Table 1. Characteristics of participants.

3.2. Produced themes

This study produced four themes, which are outlined as follows:

Theme 1: Behavior focus coping pattern

The coping patterns of the elderly in dealing with chronic diseases are behavioral focus expressed by the sixth, eighth, and tenth participants in sports and physical activities. The activity was carried out repeatedly to create a behavioral focus coping pattern in dealing with chronic disease conditions.

“I stop (recover) sick if I exercise it feels like there is a change” (P8)

“If I get here it feels healthy (in a place to keep rice), I feel good than just live at home” (P6)

“If it works like that (washing, mopping, planting) makes me better than if I stay at home, I feel sicker (P10)

Theme 2: Spirituality focus coping pattern

The coping pattern of the elderly with chronic illness in interpreting life is the focus of spirituality expressed by the first, second, fourth, sixth, seventh, eighth, tenth, and eleventh elderly. During illness, the elderly overcame chronic stressors and got closer to the almighty by worshipping such as fasting, chanting, dhikr, and prayer.

“Fasting is a good thing, and I go pray, my feelings feel good” (P4)

“... the mind is also calm when reciting” (P11)

“When reading Al-Fatihah, it is rather calm as if there is no pain... If I recite the dhikr, it is all sickness as if nothing I felt” (P8)

“... When I pray, yes, it feels good, this body feels light.” (P7)

“... It is more comfort (after praying) ... my body feels very light” (P6)

Theme 3: Cognitive focus coping pattern

Coping patterns of cognitive focus are expressed by the second, fourth, seventh, and eighth participants. Participants overcame chronic stressors by thinking and reasoning work/activities despite experiencing disease complications. The elderly continue to work their actions because they feel better when working, forcing themselves to work and life necessities. The result shows that although the elderly experience chronic disease problems, the elderly can still work with different reasons and motivations. Also, the elderly revealed that working/doing work is a form of mutual assistance.

“I have these legs that are swollen like this, and I am still out of work, so if the work feels pain, it is not too severe” (P8)

“Because it cannot be done if I am not handling it because my child cannot cook, do the dishes... It is also not good to do nothing, and there is a lack of flavor” (P4)“I help my husband... so I must help each other even though I am sick” (P7)

“I just help it for my husband... so surely helping each other so that it can reduce a little it hurts” (P2)

Theme 4: Social interaction

The coping patterns of the elderly in dealing with chronic diseases are carried out by social interactions expressed by the eldest, seventh, eighth, tenth, and eleventh participants. Social interactions that are carried out during chronic illness are interactions with friends, family, and neighbors. The participants revealed that social interaction is a source of coping and dealing with chronic diseases. The results showed that social interaction had a psychological impact on the stressor of the disease.

“I chat with friends, it disappears all the various stresses that exist” (P1)

“I was delighted because I met my friends... I was also happy because I met my family. Fewer complaints of illness due to continued excitement” (P10)

“I feel better if there are many people around me, especially if people are sitting in front of the house” (P7)

The summary is shown in Table 2.

4. Discussion

4.1. Behavior focus coping pattern

Coping patterns that focus on behavior in interpreting life with chronic disease are carried out with various activities. Participants manage stress by various activities, such as exercising, visiting rice fields, looking for busyness, washing, mopping, and planting. Four participants managed stress by these activities, which resulted in less pain and made them feel healthier. The participants who did not exercise often felt pain.

Table 2. Summary of unit/codes, category, and theme.

The study results show that the elderly do not let asthma prevent them from continuing their daily activities, even after having a bad asthma attack or other possibilities.15Older women with chronic diseases reported feeling stiff while they were moving.16The elderly apply coping patterns in dealing with chronic conditions by carrying out daily activities to transfer disturbing symptoms through action. The resulting research shows that this work is a means of discovering and developing life’s meaning if done with a positive and loving sense.

The characteristics of the elderly in this study the majority work as housewives so that they are freer to do sports and physical activities such as washing, mopping, planting even though suffering from chronic disease. Participants in this study feel healthy when doing activities that are useful for them. Besides, participants continue to carry out activities even if they are sick because they are housewives with duties and responsibilities. The effect felt is also very beneficial for the psychological condition of participants.

4.2. Spirituality focus coping pattern

The next activity undertaken was positive activities that focused on spirituality. Activities carried out are fasting, reciting Quran, dhikr, and prayer. Nine participants did a coping focus on spirituality. Participants benefited from spiritual activities, such as feeling better. Their mind is calmer, reducing illness complaints, and the body becomes lighter than before the elderly do spiritual activities. Spirituality plays a vital role in the elderly with chronic diseases in this study.

The results show that religion and religious practice provide strength and create carefree feelings, self- assurance, attention, calmness, and a source of support in dealing with illness.17-19A similar finding from previous studies is that the elderly can feel psychological comfort after performing ritual worship. Experiences expressed by participants, such as feeling better and calmer, are in line with those of previous studies that show that religion and the practice of religiosity can cause feelings of pleasure and calmness in the face of illness. Spirituality is not only related to ideas, sacred texts, and theology. Spirituality is all about emotions and social relations that depend more on the limbic system than the cortex, which stimulates positive emotions.20Also, spirituality is an individual’s feeling that connects him with the awareness of the interrelated relationship of oneself, God, and the universe to trigger meaning, purpose, and way of life.21-23

Based on the experience felt by the participants, they feel the benefits both physiologically and psychologically. The participants’ worship activities turned out to be a source of strength in dealing with disease stressors. Religious beliefs and practices such as prayer, trust in God, and surrender to God become a source of very strong coping when someone faces an illness.24,25The way of religiosity implemented by participants is a strength or a coping source in overcoming disease stressors. Besides, it will automatically trigger an increase in spirituality in increasing positive emotions that help reduce illness complaints.

Worship is also supported by an influential culture of religious values in social life in Makassar City. The field fact shows the number of study groups andtaklim(Islamic gathering activity) assemblies with the implementation setting in the mosque or the community home. The level of elderly participation in worship activities in the surrounding environment is relatively high. Besides, lectures were very routinely carried out by several mosques in the study area. Participants had many platforms to meet the needs of spirituality and religiosity—however, spiritual service-oriented to chronic diseases that the majority suffered by participants has not been obtained. During the time, the services only focus on religious activities so that the elderly do not think about the illness and think about spiritual importance to health.

4.3. Cognitive focus coping pattern

As many as six participants applied this coping pattern in dealing with chronic illness, and the participants revealed the cognitive-focused patterns. Participants are still forced to work and do activities even in sick conditions. As expressed by participants 7 and 8, “l(fā)et me get sick, just go in the rice fields,” “I have this leg already swollen like this, I am still out of work.” Other participants’ experience stated that they forced themselves to continue activities such as work at home because they regarded it as a duty, responsibility, and desire to help children do domestic work. Other participants assume that working during illness is necessary for life to get on with life inevitably.

Older women who experience disability problems force themselves to be active in their daily activities.16However, the results obtained differ from the experience of the participants in this study. Older women with chronic diseases experience comorbid, painful, restricted, or obstructed activities, focusing their time and energy on health management, especially self-care for their illness.7It can be concluded that the elderly still force themselves to work during chronic illness. It is in contrast to other studies that the elderly with chronic diseases focus on managing health care. The elderly women with chronic conditions in Makassar City still force themselves to work and do activities. With chronic illnesses suffered coupled with old age status, the elderly must bear a double burden. They must also be burdened by the duties and responsibilities of working and carrying out daily routines at home because most participants are housewives. Some still help to do everyday work. It still happens to the elderly in the city of Makassar because the majority of participants are in the middle to lower economic status and do not have a steady income; so, some elderly people are forced to continue working and help the family economy in old age and at the same time have to suffer with chronic illness.

4.4. Social interaction

Social interaction during illness is one of the activities carried out by participants with chronic disease. Social interactions between the elderly and the environment produce coping mechanisms with friends, family, and neighbors. The elderly cope with social support to deal with chronic diseases. The elderly participants are happy when they meet friends, which diverts chronic complaints experienced. The perceived benefits of participants are feeling happy, reduced stress, and criticizing the disease.

The results show that spirituality and religious involvements have a positive impact on the perception of social support in elderly Australians so that it allow older people to better cope with comorbidity.26Social support is also associated with a lack of loneliness and depression and mediates the relationship between physical health and loneliness in the elderly with chronic illness.5Furthermore, decrease in loneliness of the elderly is associated with increases in social support.27

The positive effect felt due to social support obtained by the elderly with chronic disease. Then, there were similarities from participants reducing depression and becoming a container in removing the loneliness felt by the elderly. The existence of social interaction carried out by participants is one element related to spirituality. The elderly with chronic diseases see the social environment as having an essential role in the perceived changes when dealing with chronic conditions, making them happier, reducing chronic illness complaints, and preventing loneliness.

The social-cultural aspects of the participant are worthy of further review. Social interaction activities with friends and neighbors have become a habit for the elderly in Makassar City, especially in Rappokalling village. The activity happens at a place where they gather and interact with fellow seniors and others. Also, the level of elderly participation in activities is relatively high. The finding has become an essential social capital in improving the health status of the elderly through social support. With social interaction, it is expected that the elderly will make sense of their lives.

The limitation of the research is that variations in the level of education are not optimal. Researchers are limited in exploring the experience of the elderly who have a degree of education in tertiary so that researchers do not get variations in participants’ perspective with other levels of education in dealing with chronic illness. The research team that acts as an inquiry audit is not from the research area; so, the dependability process requires time to confirm with the researcher.

5. Conclusions

The research results show the application of behavioral coping patterns which include sports and physical activities. Another coping pattern is spirituality by fasting, reciting, dhikr, and prayer. Furthermore, coping patterns of cognitive focus by doing hobbies or routine activities and helping others. Various coping patterns applied by the elderly with the disease were found to provide physical and psychological benefits. Besides, the study results indicate the benefits of social interaction between the elderly and the community and the importance of social support that helps the elderly deal with chronic illness. Exploring social support and cultural aspects is needed to enhance understanding of relationships and influence elderly coping mechanisms. Therefore, family health nurses can design and promote chronic disease and spirituality awareness for the elderly and their family caregivers through psycho-spiritual activities and social interactions. Also, nurses and professional health are expected to research and develop nursing interventions in stimulating and improving coping mechanisms for the elderly with chronic diseases.

Acknowledgment

We want to thank the Indonesia Endowment Fund for Education (LPDP) and all participants contributing to this research.

Ethical approval

Ethical clearance and research permission were obtained from Universitas Indonesia with letter number: 76/UN2.F12.D/HKP.02.04/2018.

Conflicts of interest

All contributing authors declare no conflicts of interest.