A phenomenological account of social sources,coping effects and relational role of social support in nursing among chronic patients with hepatitis

Abstract

Social support plays an important role in the nursing of patients at a terminal stage. A literature review explored the influential link of social support in coping with chronic disease, but patients with chronic liver disease have not been studied in this context. The current study examined the lived experiences of social sources of social support, patients’ expectations and the role of social support. Furthermore, it explored the importance of support for patients, coping effect and whose support matters for nursing of terminal chronic liver disease patients. A total of 21 terminally ill patients with chronic liver disease were selected through an appropriate screening process. Subsequently, in-depth detailed interviews were conducted to gather experiences of the hepatitis patients. Researchers fulfilled all the ethical considerations during the process of data collection. Social support exerts multiple beneficial effects that help in coping with chronic diseases of terminally ill patients. It was found that patients with hepatitis expected emotional, instrumental and informational support from social relations. Social support was a source of emotional gratification and a buffer in psychological distress, and helped in enabling a peaceful death for patients with chronic diseases. Among all social sources of support, spousal and child support were the most important for patients.

Keywords

coping diseases hepatitis mental and physical wellbeing nursing influence patients’ expectations provider–patient communication social support

Introduction

Hepatitis C, a liver disease triggered by the hepatitis C virus, can cause both acute and chronic hepatitis infection. Its severity ranges from a mild illness lasting a few weeks to a very serious lifelong illness. Worldwide, about 2.2% of the world’s population has hepatitis C virus (Alter, 2007). Approximately 700,000 people die each year from hepatitis C-related liver diseases (Lozano et al., 2012). Especially in developing countries, hepatitis C has become a major health problem. A substantial number of the chronically infected patients develop liver cirrhosis or liver cancer. The spread of the hepatitis C virus has created disaster in the lives of millions across Pakistan. The prevalence of hepatitis C has posed a serious public health challenge and adjustment issues for individuals, families and the community. Pakistan has the second highest prevalence rate of hepatitis C in the region, ranging from 4.5% to 8% (Khattak et al., 2002). Studies in Pakistan on targeted blood donor populations indicated a prevalence of hepatitis C as high as 40% (Abbas et al., 2008; Jiwani and Gul, 2011). However, the existing literature is still insufficient to depict clearly the probability of hepatitis C incidence among healthy individuals. About one-third of the beds of every teaching hospital are occupied by liver disease-related patients. In Faisalabad, the prevalence of hepatitis C is 22%, and marked as a Red Belt by the United Nations (Liver Centre Faisalabad, 2016).

Hepatitis C is a contagious liver disease which causes liver inflammation in long-term infection with liver damage, liver cancer and liver cirrhosis. Mostly, infected people progress to the chronic phase before becoming aware of symptoms. Chronic phase symptoms can be bleeding in the oesophagus, brain and nervous system damage (Pietrangelo, 2016). Because immunisation for hepatitis C is not available, that causes the disease to become chronic at a certain stage. Patients with hepatitis C experience episodes of abdominal pain, persistent fatigue and aching joints. In such a fragile condition, a patient needs socio-emotional support along with medical treatment. At the terminal stage, patients need personalised care by social sources (such as spouse, children, siblings, parents, friends, other relatives, as well as physician, healthcare providers and nurses). The contagious nature of the disease and a tedious and active hospital environment may expose the patient to social isolation and loneliness. To offer comfort and support to a loved one can be challenging but is needed. Patients expect to be treated as normal people, especially by close ones. The current study attempted to gauge the need for social support among terminal inpatients with chronic liver disease (CLD).

Psychological distress is associated with chronic illness, especially in the terminal phase. It is important to focus on the socio-emotional needs of dying patients as they already face terrible sufferings. Social support may also act to provide coping assistance, helping patients to access more positive and active coping strategies (Manne et al., 1999). The current study will add a unique perspective on social support in the patriarchy, as very little is known about the role of social support in the wellbeing of terminal CLD patients in Pakistani society. The current study explored the avenues of social support, patients’ expectations of social support and its impact on coping capabilities. The findings of the current study aim to extend the understanding of the socio-emotional needs of CLD patients in the cultural context of Pakistani society. Undoubtedly, this study has revealed some new aspects of palliative care that are important for nurses and physicians to understand their patients’ condition. The findings of the current study will be helpful for healthcare interventions and treatment in order to renovate the hospice setting and training of physicians, healthcare providers and nurses.

The primary objective of the current phenomenological enquiry was to explore the role of social support in coping with terminal disease among patients with hepatitis C in Pakistan. In addition, it examined the role of social sources that provide social support in the nursing of patients with CLD. Furthermore, it explored lived experiences of relational expectations and the significance of social support among chronic patients with hepatitis in Pakistan.

Dependency imposed by medical treatment of chronic illness may generate anxiety and depression (Wicke et al., 2014). At the terminal stage, chronic disease may expose the patient to emotional crisis. The emotional needs of dying patients are increased due to the sensitivity of death, which is why the majority of people want to die at home (Van der Heide et al., 2007). Chronic medical conditions increase the risk of emotional problems and social isolation (Sieh et al., 2012). Conditions inflicted by loneliness and social isolation have a damaging effect on health (McLoughlin et al., 2015). In such a situation, the need for social support becomes more indispensable than ever.

Development of specialist palliative care has been a good step towards better palliative care for end-of-life patients in developed countries, but the need for social support is still a demand of patients. In spite of strong evidence depicting the beneficial effects of social support for physical and mental wellbeing, the healthcare field has contributed less towards the development and implementation of effective interventions to increase social support for patients (Charney, 2004; Ozbay et al., 2007). The current study explored the social sources, coping effects and relational role of social support among terminal patients with hepatitis in Pakistan.

Literature review

Social support is described as support accessible to an individual through social ties with other individuals, groups and communities (Ozbay et al., 2007). It is an interpersonal transaction that involves emotional concern, information and instrumental aid. Generally, support is conceived as the degree to which a person’s basic social needs are satisfied through interaction with people around (Thoits, 1982). Social support is social interaction based on care, love and networking of mutual obligation (Bobakova et al., 2015). It is demarcated as any kind of communication for someone to feel they have the backing of people during difficult times (Albrecht and Adelman, 1987), and it stimulates coping with chronic illness (Stanton et al., 2007). It is the experience of being loved, valued and cared for by people around (Bobakova et al., 2015; Taylor, 2011). Perceived social support is negatively correlated with psychological distress and suicidal thoughts among terminal patients (Ceyhan et al., 2014). It is associated with positive helping behaviour, better orientation to healthcare and adjustment in relationships. Chronic patients who receive higher social support have a better psychosocial adjustment to the illness (Rizalar et al., 2014).

Social support may enable a peaceful death through a reduction of social isolation (Brown and Walter, 2014). It is the pivotal indicator of health-promoting palliative care theory (Kellehear, 1999). Palliative care theory encourages communities to care for people and their families as they encounter death and in turn build a compassionate relationship within the community with the patient (Kellehear, 2005). Theoretically, social support has been divided into structural and functional dimensions. The structural dimension includes network size and frequency of social interactions, while the functional dimension deals with emotional components including empathy, love and instrumental aspects such as practical help through money or assistance with household chores (Charney, 2004). Both dimensions of social support are important, but for chronically ill patients the functional dimensions may take priority over the structural dimensions. To support this argument the existing literature has provided evidence that the quality of good relationships is a better predictor of good health than that of the quantity of relationships (e.g. Southwick et al., 2005).

Chronic diseases may lead to anxiety disorders, and people often experience functional impairment in the activities of daily living, which may be evidence that family support impacts the development of anxiety disorders (Rapee, 2012). According to the buffering hypothesis, social support acts as a buffer between the stress of daily life, including the stressors of being a medical patient, and an individual’s coping response (Cohen, 1991). Social support is indispensable for the maintenance of good physical and psychological health (Ozbay et al., 2007). Similarly, high quality social support enhances resilience to stress that is ultimately helpful for the nursing and coping of individuals with the negative effects of morbidity (Southwick et al., 2005). In addition, social support influences healthcare-seeking behaviour, treatment adherence (Paz-Soldan et al., 2013) and disease-related distress (Cicero et al., 2009). On the contrary, low social support is associated with physiological and neuroendocrine issues of heightened stress, elevated heart rate (Stansfeld et al., 1997) and increased blood pressure (Uchino et al., 1996). A significant part of the literature has proposed that social support facilitates recovery (Nijs et al., 2011).

Methods and design

The primary objective of the study was to explore the avenues and impact of social support among terminal patients with CLD. While social factors influencing patients with other diseases have been studied (Banning et al., 2009) in a Pakistani context, terminal patients with hepatitis C in Pakistani society have not been studied before. The current study was conducted on inpatients of the Liver Centre Faisalabad. The Liver Centre Faisalabad is a project of the Liver Foundation Trust and is the first of its kind in Pakistan. The centre was set up in 2005 on land provided by the government at the premises of the district headquarter (DHQ) Hospital Faisalabad and has been run by a 25-member board of trustees. Patients with hepatitis C, especially in the terminal stage, visit the Liver Centre from different areas of central Punjab. Overall, 32,778 patients have been admitted until 2016. Liver cirrhosis and liver cancer are mainly the terminal stages of liver disease. Both are extremely painful for patients, making palliative care important. Patients with CLD who were admitted or were visiting emergency services in the Liver Centre hospital were approached.

In the current study, researchers used a purposive sampling technique for the selection of patients with terminal stage CLD. Of the 50 patients approached for the current study, 26 interviews were completed. The final sample consisted of 21 interviews as the first 5 were used for pretesting the data collection tools and process.

Inclusion and exclusion

Researchers only approached people with CLD at the terminal stage. These respondents were included in the sample following some screening questions and discussion with the doctors over the files of patients. Patients were asked about the number of years since diagnosis and some other medical symptoms by doctors and paramedical staff who assisted researchers throughout the current study. Many patients were not able to talk because of their physical conditions. Patients were excluded from the sample if they were hesitant about recording their interviews. In total, 11 patients with CLD refused interviews as they were not feeling well and did not want to talk about their illness as it was a source of stress for them, they were afraid that it would further exacerbate their situation. Three patients who were government employees refused to talk when researchers asked them about recording the interviews. One patient felt dizzy during the interview and he positioned himself on the bed as though he was going to sleep, but kept talking in a lower voice. Researchers tried to restart the interview but the doctor suggested leaving the patient. Four patients experienced coughing and pain during the interview, so the interviews were incomplete and were excluded from the final analysis of the study. Five other patients were interested in participating, but their family caregivers refused participation of the patients in the current study. Guidelines for research ethics were followed throughout sample recruitment and data collection.

Construction of the tool for data collection

After a thorough review of the scholarly literature, numerous variables and intervening indicators were explored. A tentative conceptual framework was drawn up to comprehend the relationship between different variables. Afterwards the most relevant questions were asked in order to get an insight into the relationship among social support and health. After the first five interviews, the interview schedule was revised and several questions were added concerning ‘expectations from social relations, feelings about visit of family and friends, importance of social support in life’. A few questions were found to be irrelevant, which is why they were removed; these included ‘number of friends’, ‘who is your best friend’, ‘who can be your companion if you go to a trip', ‘if you need emergency loan that can be helpful’, etc. In the last part, the unstructured interview schedule was translated into the Punjabi language with the help of a proficient Punjabi language speaker. Bearing in mind the sensitivity of the topic and the physical condition of the respondents of the current study, data collection was limited to a few options.

Research ethics

During a meeting with the hospital research ethics committee, doctors suggested that a psychotherapist should accompany the researcher to counsel patients if needed. They added that the sensitive nature of the current study would make respondents vulnerable to psycho-emotional pain. A psychotherapist who took interest in the present study committed to voluntarily participating in the counseling of patients with CLD. An informal meeting was held between the psychotherapist and the research ethics team on the terms and conditions of potential counseling. During each in-depth detailed interview, the psychotherapist accompanied the interviewer. When some of the respondents became emotional and started weeping, the psychotherapist consoled those patients through psycho-spiritual counselling. The experiences of the said psychotherapist provided numerous guiding elements to interpret the nature and scope of social support in coping with chronic illness.

See the Ethics statement at the end of the paper.

Field experience

During data collection, researchers faced some barriers in communicating with respondents. The foremost barrier was the patients’ physical condition that hampered their interest and participation in research. The terminal patients were found to be emotionally unstable. Even if they agreed to participate in the research, after some questions they withdrew participation. Family caregivers were seen to be hesitant to give access to their patients. The first five interviews were conducted with the purpose of pretesting. Pretesting suggested that there was a need to remove sensitive questions about religion and the relationship with God. A few questions exploring the role of social support as a coping strategy were added. After completion of the interviews, researchers translated (from Punjabi to Urdu and from Urdu to English) the data with the help of note-taking and recording. After translation into English, five of themes (Social sources of social support, whose support matters, positive aspects of social support, repercussions of lack of social support, and Pain, coping strategies and social support) emerged in the process of data analysis for the current study.

Phenomenology

The present study used a phenomenological approach to investigating terminally ill CLD patients’ experiences of being in hospital and the meanings they assigned to their socio-emotional needs in the terminal condition. In a study adopting the phenomenological approach, researchers bring their own perspectives, experiences, values, beliefs and identity to the data collection and analysis process (Lee et al., 2014). To decrease subjective and biased elements, researchers analysed the data by following Colaizzi’s phenomenological approach (Colaizzi, 1978). It is a benefit of such a qualitative technique that findings emerge without any imposition by researchers producing rich descriptions of human experiences and meaning (Thorne, 2000).

Data analysis and findings

Descriptive analysis

Data were collected in a liver hospital situated in Faisalabad city. Table 1 presents the descriptive statistics of the respondents who participated in the current study. With regard to age, the majority (52.4%) were in the age bracket of 46–51 years, 33.3% were between 52 and 57 years of age, and 14.3% were between 58 and 63 years. With regard to education, the majority (57.1%) had 10 or less than 10 years of schooling, 28.6% were illiterate and 14.3% had more than 10 years of schooling. In district of residence, the majority belonged to the district of Faisalabad, 19% were from Jhang, 14.3% were from the Toba Tek Singh district, 9.5% were residents of Chiniot and Sahiwal districts, respectively, and 4.8% were from the Nankana Sahib district. In terms of marital status, the majority (81%) were married, 9.5% were widowed and 9.5% were divorced. With regard to background, the majority (76.2%) were from rural areas and 25.8% were residing in urban areas. In terms of social support, the most important source was said to be the wife by the majority (38.1%), the brother (19%) and children (19%). Similarly, the family (9.6%), sister (4.8%) and nephew (4.8%) were the most important sources of social support for some patients too.

Table 1.

Descriptive analysis of the respondents (N = 21).

Category	Frequency	Percentage
Gender of the respondents
Male	15	71.4
Female	6	28.6
Age of the respondents (years)
46–51	11	52.4
52–57	7	33.3
58–63	3	14.3
Education of the respondents
Illiterate	6	28.6
10 or less than 10 years of schooling	12	57.1
More than 10 years of schooling	3	14.3
District of residence
Faisalabad	9	42.8
Chiniot	2	9.5
Toba Tek Singh	3	14.3
Jhang	4	19.0
Nankana Sahib	1	4.8
Sahiwal	2	9.5
Marital status
Married	17	81.0
Divorced	2	9.5
Widowed	2	9.5
Background of the respondents
Rural	16	76.2
Urban	5	25.8
Whose social support matters most?
Wife	8	38.1
Husband	1	4.8
Brother	4	19.0
Sister	1	4.8
Children	4	19.0
Family	2	9.6
Nephew	1	4.8

Thematic analysis

Avenues of social support

Family as an institution has been described to be an important support for individuals and its significance is manifoldly increased at the time of crisis, particularly coping with CLD in the terminal stage. The different sources of social support such as individuals’ ties or relationships not only provide care and love but also emotional assistance in critical situations. The participants cited different sources of social support and reported their benefits, for example they reported mentioned that relatives, family members and friends left a positive impact on chronic patients. The participants also related social support to spiritual healing benefits as they believed that prayers for health from the sources of social support left a positive impact on their mental wellbeing. A few married participants also reported children as a source of hope and recovery. One of the main advantages of social support is that it could provide empathy to patients by talking to them at night or when the medical healers such as doctors, nurses and paramedical staff were away. Friends and colleagues were found to be the core source of social support for patients at the terminal stage. This is because they are the ones who can provide relief and help in diverting attention away from pain by sharing pleasant memories. A 49-year old male respondent who was diagnosed more than 5 years earlier expressed his experiences:

Visits of my relatives are few and far between. But, my younger brother (sitting on the bench next to my bed) is looking after me. I am thankful to him that he is serving me at time of need. Whenever I am bedridden at home, he brings me to the hospital for treatment.

Community ties were a source of instrumental support as it gave patients a good feeling. Community-based support included socio-emotional support from neighbours, caste, extended family and co-workers. On the other hand, friends and relatives were considered a source of informational support as they provided information pertaining to the severity of the illness and medical treatment. Friends and family members also suggested how to deal with doctors, nurses and other paramedical staff while sharing their personal observations and experiences. A 48-year-old woman, who was coping with her chronic condition, shared her experiences:

My friend (neighbour woman) came to see me yesterday with her husband. Relatives visit me whenever I am admitted to hospital. My sisters, brothers and in-laws have visited me regularly. My relatives and friends have supported me more than I expected. They all are supporting me emotionally. My brother even supported me financially.

Whose support matters?

The importance and value of socio-emotional support depended on the quality of social support. A patient can prioritise anyone’s support. However, social support from the spouse proved to be most significant among all the emotional sources of social support, as life partners were missed by patients most of the time. The presence of a life partner was a source of hope and motivation to be healthy. Respondents remarked that emotional support provided by the spouse cannot be replaced by any other source. A female patient responded with a pale smile on her face and expressed her experiences of social support from her partner:

Among all my friends and family members, my husband is the person who is providing me all types of support. He talks to me at night when doctors and nurses go to their rooms. Every patient and their attendant in this hall go to sleep, but he is sitting on the bench next to my bed. He talks about the future of our children. I would say if I am surviving and coping with this chronic disease, it is because of the permanent support of my husband.

In the absence of the spouse, social support from other familial members such as brothers, sisters and nephews played a second fiddle role for the terminal patients. Similarly, young children were an important source for married patients in the provision of social support. A male respondent with sadness in his tone stated:

No one can replace the absence of my wife in my life. It is painful for me that my wife has left me because of her conflict with my family. Whenever I think of my wife, I feel sad. She must be here with me now. But my relatives extend their sympathies to me that I will be healthy and back to routine life very soon. It makes me feel good and satisfied that I am not alone even in this chronic condition inflicted by disease. Similarly, my friends encourage me to cope with this condition that infuses hope.

Other than the spouse, patients expected emotional support and the company of close social relations such as the life partner, children, brothers and sisters, etc. Patients expected care, love and emotional support from relationships as their moral right at the terminal stage of the CLD. The age and type of relationship were important factors in the expectation of social support as patients find it convenient to share their experiences with their age fellows and close ties. A respondent talked about the role of social relations in human life in general and at the time of crises:

Everyone knows how much important our relationships like family, children, braderi [caste-based extended system of relatives] and friends are for us. Assistance and cooperation of loved ones is the blessing of God.

Positive aspects of social support

Frequent visits of friends, family and colleagues brought about certain positive effects on the overall mental and emotional wellbeing of patients, while lack of social support left them with depression and anxiety. The provision of social support helped in improvement of the quality of life at the chronic stage. Social support played a pivotal role in coping with social alienation in the hospital, as doctors and nurses were only focused on treatment and medicine. Hepatitis C-affected patients felt good to see people around them. Emotional support by relatives provided encouragement for survival and coping with the chronic condition of disease. Emotional support was the source of a peaceful and less painful death for patients at the terminal stage. A 50-year-old respondent who was diagnosed 2 years earlier shared her opinion about the importance of social relations:

When my family members, relatives and friends visit me, for the time being, I forget about the chronic condition of disease I am suffering from. Usually, relatives and friends talk about some good memories that we lived and shared together in the past. It gives relief to my pain-ridden life.

Visits of friends and family members helped in forgetting the suffering of the chronic disease temporarily. Friendly conversations of chronic patients with their loved ones made their mood pleasant even in their miserable condition. The provision of social support resulted in an improvement in many habits (such as eating habits, medicine taking, etc.) of patients. Patients liked love and care, but at the same time they disliked the sympathetic orientation of the visitors. The warmth and attention of the emotional support provided by all sources of social support offer compassion, concern, care, affection, trust, acceptance, encouragement and coping aptitude for patients. A 50-year-old respondent who was diagnosed 10 years earlier expressed his experiences:

I feel a lot of happiness whenever any of my relatives and friends come to inquire about my health condition. Their visits and presence provide a lot of courage. I know the ultimate result of the chronic condition of my disease is death. I am not afraid of death now as it is certain in nature and a permanent phenomenon in human life.

An altruistic attitude and orientation by family, relatives and community gave a strong and self-existential feeling of being a valuable social entity among patents with CLD. The feeling of being important in others’ lives has great significance for human survival. A 42-year-old woman who was diagnosed with this chronic disease 7 years ago shared her experience:

Support of the family members is necessary at the time of diseases because we are usually emotionally fragile at the time of physical pain of chronic disease. My one sister is supporting me and bearing expenses of my treatment. Whenever I need money, I ask her for help. She frequently visits me at hospital. She is the source of life for a poor person like me.

Social support became a decisive healthcare-seeking behaviour among patients. The provision of better social support was a source of better inclination towards recovery and coping as compared to the non-availability of socio-emotional support.

Repercussions of lack of social support

Lack of social support among terminal patients caused dejection and emotional disturbance. Patients at the terminal stage expected people to be with them in the chronic illness. Failure to fulfil expectations resulted in hurt feelings and depression. Patients also expressed satisfaction and appreciation over the provision of emotional support from social relations. A 49-year-old male respondent expressed his opinion:

My friends and relatives come to see me at hospital. But I can understand why they are unable to give me time as per my expectations. Everyone is busy in earning a livelihood so it becomes difficult to be with a bedridden patient.

In addition, the lack of social support caused deterioration in overall mental and physical wellbeing at the terminal stage of illness. Social support helped to avoid the condition of overthinking that ultimately may cause frustration among patients. The critical phenomenon of overthinking caused by loneliness might be controlled through a sense of belonging and positive conversations. A male respondent who had been coping with the disease for the last 8 years expressed his opinion:

Relationships of this world are temporary yet these are unavoidable at the time of need. If the family of a patient doesn’t support, it worsens his/her chronic condition. The patient loses courage and hope in the absence of familial support. I think if the family supports a patient, he/she can die a peaceful death.

Pain, coping strategies and social support

Pain is a multidimensional phenomenon with biological, psychological and social aspects. In chronic illness, especially hepatitis C, pain is the most reported symptom. Patients experienced and expressed persistent pain during the disease that made them susceptible to severe psycho-emotional distress. The foremost thing patients wanted was to get rid of this chronic pain. Social support was found to be helpful in appeasing the pain. In the presence of friends, relatives and family members, patients coped with pain inflicted by illness. Although the influence of pain cannot be completely expunged, its severity can be minimised through the availability of social support. The presence of sources of social support helped participants to focus on things other than pain. As a 50-year-old man said:

It feels good. I think if I am alive and coping with this disease, fighting with this pain, it is only because these people give me courage. Even if I die I will die peacefully. My children are in safe hands.

In some cases, patients believed social support could not remove pain in any way. The severity of pain was beyond medicines and anything else. However, social support can change the mood of patients for a while. The unavailability of social support causes depressive symptoms among patients. Social isolation creates a vacuum for overthinking and illness-related distress. So in such a situation people around the patient help to divert attention from pain. A 48-year-old man who had been diagnosed with CLD 1.5 years ago described:

Many friends are coming to see me. When friends come to see from distant places, it makes me feel good. It gives me courage to cope with physical and emotional pain. I have stopped many of my friends and relatives because hospital management does not allow visiting of more than a few people.

Study participants shared their experiences of how social support becomes important at a time of emotional and financial crisis. Patients illustrated their experiences of coping through social support. Pain had been a permanent factor in their chronic disease; thus avenues (i.e. family, friends, relatives, co-workers) of social support provided resilience and relief at the time of pain. A 54-year-old patient expressed his opinion about his wife and relatives:

I feel emotional gratification when my family members, relatives and friends come to console my chronic health condition. I feel fresh and relieved after their visits. My wife is very supportive and my sons are very nice and caring. My wife supported me a lot. My wife motivates me to cope with this chronic disease. Indeed, she always supported me through thick and thin. I pray for the good health of my wife.

Frequent conversations with social sources of social support helped to reduce depression caused by loneliness and social isolation in the hospital environment. The coping effect of social support lessened the fear of death and misery in the terminal stage of CLD. The presence and visits of the relatives, friends and family members was a permanent source of motivation for the mental wellbeing of patients. A 46-year-old female respondent shared her experience in hospital:

Visitors always encourage me to cope with disease. In the beginning, it was difficult to adjust in the hospital environment. I hate the smell of medicines here. Due to the visit of my loved ones, I started adjusting here. The presence of family members here gives me an impression of my home. I miss my home and want to recover quickly so I may go home.

Discussion

The purpose of the current phenomenological study was to expose different sources of social support and their role as coping strategies in a sample of terminal CLD patients. In addition, it aimed to explore the potential expectations of patients, as well as the repercussions and importance of social support. Furthermore, it examined the coping effect of social support and whose support has been the most significant for patients. Overall, a higher level of availability of social support related to better coping with disease. In particular, patients who are at the terminal stage consider that more positive social interaction, emotional/informational, affectionate or tangible support reported lower levels of depression (Alferi et al., 2001; Bloom et al., 2001; Buchanan et al., 2010). The scholarly literature reveals that social support received from family, friends and healthcare providers is the most important resource for patients with chronic illness (Gleeson-Kreig, 2008; Pehlivan et al., 2012).

Social support is composed of all kinds of social relationships that are strongly concerned with providing feelings of being cared for to a person (Janowski et al., 2012). These social relationships can be family members, friends, spouses and other relatives. In some studies, breast cancer survivors have been primarily found to be relying on support from their spouse to cope with depression and anxiety produced by the disease (Kagawa-Singer and Wellisch, 2003). Other studies have found that social support from adult children and family members predicts less anxiety and depression among African patients (Maly et al., 2005). Support from family and the religious community predicted lower anxiety among Israeli women with advanced breast cancer (Hasson-Ohayon et al., 2010).

In the present study, the visits of relatives who brought them to the hospital for treatment have been found to be significant for patients. Social support encourages members of the family and community to look after patients through building compassionate patient–community networking (Kellehear, 2005). Neighbours and other people from the community come to see patients in hospital, which provides them with social support.

Patients’ perceptions of provided support are equally important (Khanlou et al., 2015). Emotional support that is gained from family members has been found to have positive effects on mental and physical health (Untas et al., 2011). It has been identified that a terminal patient develops expectations about friends and relatives and their attitude with the patient in times of crisis. When someone does not fulfil the expectations of the patient it hurts a lot. The environment of the hospital becomes difficult for patients with a chronic disease to endure as terminal CLD patients expect support and the company of social relations to expunge the influence of the pain and miseries caused by the disease.

Social support is one of those needs that must be met for a better quality of life of patients with chronic diseases (Busse et al., 2011). Patients reported that when family members, relatives and friends visit, for the moment patients forget about the chronic condition of their disease. They want to talk about good memories with relatives and friends. Conversation with dear ones offers some sort of relief to terminal CLD patients.

Spiritual support consists of actions of other people (e.g. spouse, family and friends), which help a patient to attach some meaning to disease and suffering (Janowski et al., 2012). The support of people around the patient also influences medical outcomes (Barth et al., 2010). Lack of social support is associated with increased morbidity in patients, especially in women (Mookadam and Arthur, 2004). Patients reported increased levels of happiness when their relatives and friends come to enquire about their health condition. Their visit and presence are a source of courage.

Social support from social relationships helps a terminal patient to fight against the isolation that has long been implicated as a risk for depression (Bruce, 2002). Patients described that they feel emotional gratification when family members, relatives and friends come to console them in their chronic health condition. Support from the spouse has been a very satisfying component for most of the patients in coping with the terminal illness.

In chronic disease, patients go through severe distress (Pehlivan et al., 2012). Depression is a common psychiatric disorder in chronic/terminal disease that perpetuates from loneliness and hopelessness (Asti et al., 2006). In such a condition, social support from the family becomes more relevant for the recovery of patients (Bobakova et al., 2015). This notion has been endorsed by the findings of the present study that demonstrate the same concept. Visitors always encourage coping with disease. The presence of family members provides feelings of home even in hospital.

The social support level is an important determinant of wellbeing in chronic illness that helps patients to cope with hopelessness or loneliness. Decreased social support is often associated with increased loneliness and hopelessness. The present evaluation indicates that the levels of perceived social support of patients from their families may be sufficient to prevent loneliness or hopelessness (Pehlivan et al., 2012). The present study has reflected the similar findings that the support of family members is necessary at a time of disease because physical pain in chronic disease heightens distress and depression. Family social support provides a cushion in such distress and reduces distress and depression brought about by the terminal illness.

As a result of a rapidly growing ageing population and an unprecedented number of citizens requiring end-of-life care, an increasing number of these caregivers are being called upon to provide care for dying family members (Giesbrecht et al., 2012). Respondents who had been coping with the disease for a long time expressed that although relationships are temporary and these are unavoidable at a time of need. If the family of a patient does not offer support, it worsens his/her chronic condition. Patients lose courage and hope in the absence of familial support.

Doctor–patient communication is an important aspect of the medical treatment process that gains further significance when it is a terminal illness. Improving physician communication skills and the management of psychological aspects in chronic disease can have positive effects on patients (Linder et al., 2009). Those patients who are continually updated with new information on the availability of new treatments for disease, and are treated with supportive gestures, will be less likely to be affected by feelings of uncertainty (Broaddus et al., 2015; Lamb et al., 2004). With a terminal disease patients may feel different kinds of loneliness including social and emotional loneliness. The doctor’s compassionate interaction can be helpful in reducing this loneliness. Patients continually report that it is difficult for a terminal patient to live alone and that it becomes worse at the time of physical pain. Social support by a doctor is very important at the time of difficulties in life.

Children of a terminal patient are another important source of social support. Positive aspects have been associated with the illness, such as gaining a sense of fulfilment through caring for their parent and building up a cohesive social support (Newman, 2002). Findings revealed that children are another important source of support. Support given by family or a partner has been demonstrated to improve adjustment to somatic illness and to predict a better quality of life for cancer patients (Gustavsson-Lilius et al., 2007). Terminal patients responded that among all friends and family members, the spouse is the person who is important for all types of support.

Conclusions

Social support plays an important role in individual, group and community life. Individuals’ expectations of social support increased at a time of crisis such as suffering from a chronic disease. The spouse, children, brothers, sisters, nephews, relatives, doctors, healthcare providers and nurses were major sources of social support for hepatitis patients, but it was the spouse or children that mattered the most for patients. Patients with hepatitis expect emotional, instrumental and informational support from social relations. Social support is a source of emotional gratification and a buffer in psychological distress, and helps in enabling a peaceful death for patients with chronic diseases.

Strengths, limitations, future research

Very little has been done to explore the role of social support in the wellbeing of terminal patients in Pakistan. In particular, patients with CLD failed to gain the attention of socio-medical researchers despite its large-scale prevalence. The present study is an effort to explore the role of social support in coping and wellbeing in a society that is claimed to be highly socially integrated.

An important limitation of the current study is the generalisability of our findings. Although the population of the present study belonged to far areas of the division of Faisalabad, it was not representative of the whole Pakistani population. More than half of the participants were found to be from a low socioeconomic position. It is possible that these population characteristics explain the relatively high prevalence of depressive symptoms in the sample because of their economic or social issues. Therefore it is possible that the generalisability of our findings is limited by the characteristics of the sample.

Major findings including the present study show a strong association of social and emotional support with better health outcomes. However, future research should explore why this relationship exists. Based on the results of the current study, it can be inferred that a quantitative study with a healthy sample size is required to observe trends. Future research on a large population would be able to give some useful suggestions to renovate the settings of hospices.

Key points for policy, practice and/or research

The findings of the current study can contribute to restructuring the hospital environment, as generally in hospitals patients (especially terminal patients) are socially isolated due to treatment.

Hospital policy should consider the socio-psychological needs of the terminal patient.

Medical social workers and experts in nursing can make efforts to connect patients with necessary social support avenues in the community through the engagement of patients in different community-based activities.

Terminal patients need to be provided with supportive counseling, psychotherapy and grief counseling.

The results of the current study have implications for the training of physicians, healthcare providers and nurses from social and psychological aspects of the medical and nursing field rather than solely focusing on medical aspects. In addition, caregivers need training for the specific palliative care of terminally ill patients.

Footnotes

Declaration of conflicting interest

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

Ethics

Research participants were interviewed after proper informed consent. Researchers also ensured the quality and integrity of the research. All the participants participated in the study voluntarily. Confidentiality and anonymity of the respondents were also ensured. The research topic and study protocol were approved by the board of studies, advanced studies research board and the departmental research ethical committee. (Advanced Studies Research Board (ASRB), University of Sargodha, Punjab, Pakistan Reference number: PhDOF12EO2).

Funding

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

MM Sohail teaches sociology at the National Textile University, Faisalabad, Pakistan. His research interests include the sociology of religion, spirituality and medical sociology.

MG Yasin teaches at the Department of Sociology, University of Sargodha, Sargodha, Pakistan. His research interests include research methodology, the sociology of management, the sociology of religion, and medical sociology.

S Ahmad teaches at the Department of Sociology, University of Gujrat, Gujrat, Pakistan. His research interests include the sociology of family and intimate relationships, research ethics, political sociology, medical sociology, domestic violence and social media.

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