Coping strategies used by families in Indonesia when caring for patients with mental disorders post-pasung, based on a case study approach

Participants

The research population comprised families each with a family member suffering from a mental disorder. The sample was obtained by purposive sampling. The inclusion criteria were families who were living with a post-pasung patient with a mental disorder, could communicate well, and were aged >20 years. Six families were enrolled. The participants were recruited on the basis of ethical principles (confidentiality, beneficence, and informed consent) (figure 1).

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Data collection and analysis

The interview guidelines were developed based on the standard questionnaire of ways of coping by Folkman and Lazarus,9 Coping Health Inventory for Parents (CHIP) by McCubbin and Patterson,10 and theory of stress adaptation by Stuart.11 Before the data collection, the researchers carried out interview guidance trial tests on two participants to validate the questions.

Researchers approached the participants by conducting interviews at confirmed places. Researchers conducted crosschecks and compared the information obtained with other family members to avoid errors. The interview process was done until new unidentified themes appeared. Researchers used stationery and a recorder as data collection tools. The interview results were written as verbatim transcripts and created after each participant had finished being interviewed.

Data analysis was done using Colaizzi’s12 method, which was started by recording the interview in written form (verbatim). Afterward, all verbatim transcripts were read repeatedly to identify a particular meaning of words or sentences and to obtain codes based on the similarities and differences in meaning. Then, the meaning of the significant sentences was explained by collecting and organising the formulation of the category. The next steps were to convert description into themes, which resulted in the validation theme. Categories and themes were extracted from the main idea of the statement and the sentence, which were stated by the participants during the interview process. Data collection was conducted simultaneously with the data analysis process until data saturation occurred.

Category 1: types of coping

Category 2: strategies

Category 3: support sources

Category 4: meanings of taking care of post-pasung patients with mental disorders

Main findings

There were three coping models performed by parents. One of them was productive coping, including problem solving, hard work, involvement, positive thinking, resting, and physical entertainment.13 After being analysed, all participants also used this coping model. Productive coping was done by the family in taking care of the post-pasung patient with mental disorder by bringing them to a nurse or doctor, making appointments at the outpatient clinic, giving medication, bringing them to Lawang Psychiatric Hospital, having them routinely take their medicine, taking their drug prescriptions to the primary care clinics or buying medicine, involving them in normal activity, and having a positive feeling.

The destructive coping in this study showed four coping features. Families with a destructive coping condition conducted treatment by visiting non-medical or alternative therapies, being over protective of the patient, neglecting medication control, and having negative feelings in regards to taking care of the post-pasung patient with a mental disorder. Destructive coping was a coping condition that negatively impacted the post-pasung patient with a mental disorder.

Negative feelings also became a destructive coping condition. Feelings of burden embodied the expression statement of being annoyed, tired, and pitiful. Families with members who have a mental disorder experience objective and subjective burdens and also lifelong stress.14 15 In 2008, WHO classified the burden experienced by families into two subjects: subjective burden associated with the psychological reaction of family members; and objective burden which was a limitation of social relations and work activities. The burden could be felt as a psychological burden, physical burden, and financial burden related to the treatment cost for the patient with a mental disorder.16

This study illustrated that the family coping condition was not limited to one coping condition—in other words, the coping condition fluctuated. The family’s coping condition was influenced by various factors, including the types of problems faced by the family. Each participant tended to be dominant against one of the coping conditions, if they faced the same problem or situation equally. However, the condition might change or still remain when participants encountered new problems or new situations. Coping was complex and took time. One coping strategy used by a person tended to be stable and consistent during the times of high pressure. Coping might change from one time to another when an individual faced certain stressors (stress conditions) because coping was a process.17

Strategic process stages were divided into four stages. The first was the initial situation stage, which had an unawareness section. In the early phase of the situation, families tended to not realise the initial situation of family members experiencing a mental disorder. Almost all participants experienced the same initial situation. The family never suspected or thought that members of their family had a mental disorder. Instead, they thought of other circumstances (mainly mystical events). They did not understand why or how their family member had a mental disorder and what caused the disorder. The second phase was looking for healing from non-professionals (ie, a shaman). Because the family assessed that members of their family had experienced mystical things, they then entered the second stage of looking for healing from non-medical treatment; therefore, the medication process was not relevant. Two participants also did that, but not in the early stages. However, they did so along with medical treatment.

The third stage was being in the lowest point in their lives, which meant having insufficient funds for treatment. The situation occurred due to the previous stage: visiting the shaman repeatedly in different places, but achieving no results, so that they then ran out of money. The last phase was surviving the situation. At this stage, there were two sections. The first section was to go through the situation and continue to look for ways of healing. This stage was the final process of delivering families to the coping strategies and mechanisms chosen for treating the post-pasung patient with a mental disorder and determining the family’s coping response. The section underwent a situation reflected in maladaptive responses due to the poor family efforts to improve the recovery process of the patient with a mental disorder. Meanwhile, continuing to find a way of healing was reflected in the adaptive coping response. This section illustrated that families were actively pursuing efforts to find ways to improve the mental health and recovery of the patient with a mental disorder.

The support source of the family was something that could have a sufficient impact on the stressful event and the family stress level .18 19 In this study, two coping resources were obtained by participants from intra-family and public support. Stuart also stated that the coping source could be found internally and externally. Support sources in the form of financial assets, problem solving skills, social support, and cultural beliefs could help with integration of stressful experiences into real life and, thus, individuals learn to adopt a successful coping strategy.11 The research showed that intra-family coping support was categorised as the external family circle of the patients with a mental disorder. Support provided were material support (money) and non-material support (services, treatment, etc).

Internal family coping or intra-family coping included relying on family groups, having a sense of humour, maintaining family ties, controlling the meaning and significance of the problem, solving problems together, maintaining flexibility, and normalisation.20 The term source of family support referred to the family’s internal attributes in protecting the family from the impact of stressors and in facilitating the family adaptation process throughout the period of stress and/or crisis. Family cohesion (unity bond) and adaptability (ability to change) were two things in the family that tended to make adjustments to stress more successful (with the results of more successful coping).18

Public support was a family coping support system from the external family circle. Public support on this study was the supporter, the surrounding community, and the environment. Sources of social support included: spontaneous and informal networks, organised support of non-health workers, and organised support of health workers. In general, public support was used as a protective effect against stress and it promoted recovery from stress or crisis.20 This study produced two forms of family coping support sources, including public support—that is, neighbours and government/social figures.

The appearance of the source of family coping support in taking care of the post-pasung patient with a mental disorder showed that support for each participant did not always come from one direction, but from various directions. This support was influenced by various factors, for example, culture, interaction with the surrounding environment, community acceptance, and social sensitivity. Social support affected the process of acceptance for patients and their families.21

The intended meaning was family assessment or family perception of what the family members (patient with mental disorder and their families) were experiencing. Being influenced by a source of coping, the person could find meaning in a stressful experience and consider alternative strategies to cope with stressful events.11 This study gave two types of meaning to take care of the post-pasung patient with a mental disorder, which were positive meanings and negative meanings. The results illustrated only a small fraction who could obtain positive meanings from their experiences. This could be seen from the statements of both participants, which expressed more than one perspective.

The negative meaning perceived by the family affected the process of survival and recovery for the post-pasung patient with a mental disorder. Basically, the negative meaning was related to family dissatisfaction in overcoming the problem of taking care of the patient. The negative meaning could develop and increase the stress level on the family. Valuation and signification of negative life events could increase the stress level by all family members.22 Theoretically, the impact of the stress events source was influenced by the definition or meaning that was felt by the family from the event. The subjective definition of the family might vary. They could see the situation as a challenge and a chance to grow, or as a negative view that everything was hopeless, too difficult, or unmanageable. The empirical findings showed that the individual’s cognitive judgement of life events strongly influenced the response, and it was perhaps the most important component in determining an individual or family response to a stressor event.18

The stress adaptation model by Stuart11 did not explain the stages of the strategy process in determining the choice of coping mechanism11. Therefore, the researchers tried to describe the stages of the strategy process based on interviews with the participants and analysis of the relevant literature. The stress adaptation model touching on the source of the coping support was an option or strategy to help determine what can be at stake. The existence of a support source might take the available coping options into consideration, the possibility of the given option will be successful, and the person can effectively implement the strategy. Stuart’s sources of support included economic assets, abilities and skills, social support, and motivation, and incorporated all social levels (relationships between individuals, families, groups and communities). This research categorised coping support sources into two groups, which were intra-family and public supports. Both categories were a form of support source transformation proposed in the stress adaptation model.

Coping strategies focus on perception of the situation. A positive meaning led to a spiritual judgement that what happened in the family was a test or trial from God. This spiritual judgement then produced several attitudes, for example, acquiescent, patient, or surrendered attitudes. Positive meanings would have a positive impact on the recovery process of the post-pasung patient with a mental disorder. Meanwhile, more negative meanings were towards negative judgements, namely, events caused by some particular things (destiny or lineage). Negative meanings tended to lead families to maladaptive responses.

Limitations

There are several limitations of the present study. First, this study employed a semi-structured interview with the method of in-depth interview as a method for collecting data. The limited experience of researchers in extracting data through interviews would affect the level of depth and breadth of data obtained. Second, participants in this study were characteristically old and some participants were Madurese. Thus, the terms appeared to be culture-based terms.

Implications

The appearance of family coping was generally constructive or destructive coping, where the situation fluctuated depending on the problem and the situation. The family coping strategy process was carried out in four stages. The first stage was the early phase of the family in which they were unaware of the situation that was happening to members of their family. In the second stage, the family would look to non-professional parties such as a shaman for help. In the third stage, the family was in a state of insufficient funding. Meanwhile, in the fourth stage, the family survived the situation. The source of family coping support was obtained from intra-family and public support. The meaning of this description was that the family felt the experience in positive and negative ways. Our results suggested that the primary healthcare centre is expected to be able to provide several mental health service programmes in the community, including counselling for those whose family members have a mental disorder or are post-pasung patients with a mental disorder. Finally, an occupational therapy programme, monitoring and home visits, and counselling for families could strengthen family coping strategies.