CAREGIVERS ADAPTABILITY STRATEGIES AND PALLIATIVE CARE FOR MENTALLY ILL PERSONS (MIPS) IN SOUTH -SOUTH GEOPOLITICAL ZONE, NIGERIA

CHAPTER 1

INTRODUCTION

1.1           BACKGROUND TO THE STUDY

One major concern of today’s family is the health of its members. Good health is a great asset for everyday life of people and comprises, physical, mental, emotional, financial, and spiritual aspects of an individual/family which all contribute to the overall wellbeing of an individual/ family (Sampson, 2020). To be considered healthy, it is crucial that all the aspects of health are functioning properly and free from any infirmity. The constitution of the World Health Organization (WHO) which came to force in April 1948, defined health as a state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity. This definition was adapted by the 1986 Ottawa Charter, which described health as a resource for everyday life, not the object of living. From this perspective, health is a means to living well, which highlights the link between health and participation. The major criticism of this view of health is that it is unrealistic, because it leaves most people unhealthy most of the time (Smith, 2008); because few, if anyone will have complete physical, mental and social wellbeing all the time, which can make this approach unhelpful and counterproductive.  The WHO (2010) submitted that health can be promoted through healthful activities such as regular exercise, adequate sleep and by avoiding unhealthful activities like smoking and/or excessive stress.

 Physical and mental health are probably the two most frequently discussed types of health, because a good physical health can work in tandem with mental health to improve a person’s overall quality of life, which will invariably affect the individual and family. Mental health which includes ones emotional, psychological, and social wellbeing can affect daily living, relationships, and physical health of individual and families and therefore, needs to be cherished, promoted and conserved to the maximum; failure of which results in mental illnesses or disorders (Kumar, 2018). According to National Institutes of Health (2021), mental illnesses or disorders refer to a range of health conditions that change a person’s thinking, feeling or behavior (or all three) and that causes the person difficulty in functioning. Having this condition can seriously impair temporarily or permanently the individual’s ability to function in social, work or family activities.

Researchers averred that, one in four persons are affected by one mental illness or the other during a given year globally, regardless of age, gender, race, ethnicity, religion, spirituality, and any other background (Ayalew et al., 2019). Some of the mental illnesses identified are depression, psychosis, , and bipolar disorders amongst others. As with many diseases, mental illness can be mild in some cases and severe in others. Individuals who have a mild mental illness do not necessarily look like they are sick, whereas those who have severe mental illness will exhibit more pronounced symptoms such as confusion, agitation or withdrawal from people and social activities. National Institutes of Health (2021), asserted that mental illnesses if not prevented, identified early, and treated rapidly and aggressively can degenerate into severe mental illness. According to World Health Organization (WHO) (2013), severe mental illness is a mental health condition that is so debilitating that the sufferer’s ability to engage in functional and occupational activities is severely impaired. Other terms that can be interchangeably used for the condition are mental health problems, mental disorders, psychotic disorders, and others. According to Malhotra (2016) and Felman (2020), one in five in families has at least one member currently suffering directly or indirectly from some sort of mental illness each year and the number of people diagnosed with mental illness had continued to increase throughout 2020 and remains higher than rates prior to covid-19. The major explanation for the increase is the unprecedented stress caused by social exclusion, constraints on people’s ability to work, seek support from loved ones and engage in their daily commitments in the community as it were prior to the covid-19 pandemic.

As the number of Mentally Ill Persons (MIPs) continue to increase among families because of pressures of daily living and other reasons around the world and Nigeria inclusive, these persons will require a caregiver due to the limitations the condition will expose the sufferers to. According to Triantafillou and Mesthenaiou (2018), a caregiver   refers to any male or female member of the family who helps with another person’s social or health needs. Caregiving may include help with one or more support to a person in need or a patient, both to meet his/her daily needs and for companionship. Researchers asserted that, caregivers can be formal (paid caregiver) or informal (unpaid caregiver for instance family members, friends, or neighbours) person who provide multiple cares such as physical, medical, social and others to help an individual live as healthy as possible (Ayalew et al., 2019). Researchers reported that not only is most of the care provided by family members, but majority of the care giving role is carried out by women (Sharma et al., 2021). Lack of experience on the part of caregivers, couple with lack of resources can make caregiving scary and insurmountable  particularly when navigating complex situations like caring for MIPs. According to Gomez-de-Regil (2014) and Ikwuka (2017), caregivers characteristics such as, gender, age, and educational level; causal attributions around mental illness have significant influence on the caregiver’s ability to adapt to the care giving role and undoubtedly affects care giving behaviours of the caregiver, recovery and/or rehabilitation of MIPs. In fact, researchers have revealed that caregiving is associated with significant burden and other health risks, which has been exacerbated by the Covid -19 pandemic and high cost of living (Holliday et al., 2022).

Although, caring for a loved one can be incredibly fulfilling, but it can also be both physically exhausting and mentally overwhelming to the caregivers. Caregivers often neglect their health and welfare because they usually put their loved one’s needs before theirs and forget that their health is affected and as a result are at increased risk of suffering physically, psychologically, and socially while providing care to MIPs. Actually, the challenges that caregivers face are well documented in the literature that caring for MIPs can lead to social isolation, financial difficulties, occupational restrictions, and negative emotions such as anger, aggression, frustration, low self-esteem, constant worry, and feelings of helplessness and even death (Yin et al., 2015; Lament and Dickens, 2021; Phillips et al., 2022;). In addition, there is an increased risk of reduced life-expectancy, lower wellbeing and mastery of life skills and other setbacks for the caregivers.   As a result of these and others, caregivers must seek for resources, and supports that would assist them in the caregiving role delivery (Adaptability). According to Javadian (2011), adaptability is the ability of   a family or an individual to change its power structure, role relationships and relationship rules in response to situational and developmental stress. Families and caregivers use physical, social, emotional, financial, and other strategies to be able to adapt to the caregiving role depending on the level of burden experienced and other factors.

It has been reported that the reactions to or consequences of providing care are what renders the role of caregiving a challenge and thus push caregivers to be adaptive or maladaptive. Being adaptive implies that the family or caregiver is flexible, and able to employ positive strategies in managing the prevailing crisis situation within the family system whereas being maladaptive suggests that the family or caregiver employs negative strategies and is unable to adjust appropriately to the crisis within the family. According to the circumplex model, there are four levels of adaptability. These levels are rigid, structured, flexible, and chaotic (Olson and De-Frain, 2020). The two central levels (Structured and Flexible) are considered adaptive (Balanced) levels while the two extreme levels (Rigid and Chaotic) are considered maladaptive (Unbalanced) levels. The level of adaptability shows how well or not a family or caregiver can meet the challenges presented by the prevailing crisis within the family system.  

Family crisis is a situation that upsets the formal functioning of the family system and requires  new set of responses to the stressor, it can also be regarded as a disruption or breakdown in a family/ individual’s normal or usual pattern of functioning (Debi, 2012). Family situations that can create stress and crisis include child and/or spousal abuse, death of a family member, retrenchment, accident, unplanned pregnancy, and mental illness of a family member amongst others (Washington State Department of Social and Health Services (DSHS, 2019).  In view of the fact that families generally may be devoid of knowledge of the cause of the mental illness; and may lack the resources to meet the demands of caregiving (the prevailing situation); the onset of a mental illness in the family often, and understandably, throws the family into a crisis, which requires new sets of responses to assist the affected individual (mentally ill person- MIP) to live as healthy as possible (palliative care).

According to Department of Health and Aging (2010), palliative care is specialized care provided for persons of any age, and at any stage of an illness, living with a life-threatening illness whether that illness is curable, serious, or chronic to alleviate symptoms, whether there is a hope of healing by other means or not.  WHO (2018) posited that palliative care is an approach that improves the quality of life of persons (adults and children) and their families who are facing problems associated with life-threatening illness whether, physical, spiritual, or psychological to alleviate the symptoms and help the individual live as healthy as possible.  In Kam (2021)’s view palliative care is care designed to boost the quality of life for persons diagnosed with a serious, long-lasting disease or with a life-threatening illness to make the life of the person and the caregiver much easier.  Palliative care can be provided at different settings like family home, hospitals, community care centres and other settings depending on factors like geography, services available in an area, needs and desires of families. Palliative care is provided by an interdisciplinary team consisting of doctors, nurses, psychotherapists, physiotherapists, clergies, dietitians, and other allied health professionals and most importantly a caregiver to relieve suffering in all areas of a person’s life (WHO, 2012).  For this work, family caregivers who are the most important members of the palliative care team and provide care to MIPs at psychiatric centres in the south -south geopolitical zone of Nigeria was recruited as respondents for the study. Psychiatric centres are hospitals, mental health units, wards, or behavioural health units specializing in the treatment and care for the MIPs (Mahomed et al., 2018). Researchers asserted that the types of palliative cares provided by caregivers to MIPs are physical, social, psychological, religious and others (Pearce et al., 2018). These cares are provided from the time of diagnosis till recovery or death of the patient (MIPs).

In this 21^st century, several factors have informed the increasing need for palliative care globally because, the shift from communicable to Non-Communicable Diseases (NCDs) (for instance, cancer, end-stage renal failure, severe mental illness, or disorder) and others, have become prevalent; and are becoming the leading cause of palliative care and death worldwide (WHO, 2010). According to Bajiaro (2015), the World Bank and WHO in 2014, revealed that Severe Mental Disorders (SMD) contributed about 10% of global disease burden and that this proportion would increase to 18% in 2020. The prevalence of mental illnesses and their undesired personal, familial, and social consequences have increased simultaneously with population growth and urbanity in the South-South geopolitical zone of Nigeria (Osundina et al., 2017). Researchers have asserted that severe mental illnesses represent one of the main challenges of the family because MIPs will always need a caregiver to provide care due to the limitations they will be experiencing in the physical, mental or cognitive functioning (Diaz and Monteiro da Cruz, 2017). Consequently, palliative care is now viewed as a human right with the focus clearly placed on improving the quality of life of the patients and families, not just on symptoms management (Sheridan, 2019).

The practice of care giving to MIPs, has evolved over several years spanning from an era of purely traditional practices and beliefs to the modern therapeutic practice of using medications and other therapies for healthy living of the individual sufferers. Given that the numbers of persons affected by mental illnesses continue to increase by the day, all of them will require a caregiver due to the limitations they experience in their ability to function. The fact that the caregivers might not know the duration they are going to provide care to MIPs and might be ill-prepared to assume the crucial care giving roles, couple with the demands of daily living, the caregivers might be adaptive (positive)   or maladaptive (negative)  in this new role depending on their characteristics, resources available within and outside the family and other factors.  Limited psychiatric services coupled with increased mental disorders in the area have led families to play a critical role in taking care of MIPs, yet little is known about the strategies utilized by caregivers for palliative care of MIPs. It therefore becomes pertinent that this study on caregivers’ adaptability strategies and palliative care of MIPs in South- South Geopolitical Zone of Nigeria be carried out to add to efforts in this area of research, thereby bridging the research gap.

1.2       STATEMENT OF THE PROBLEM

 In Nigeria particularly South-South geopolitical zone, individuals and families are facing numerous challenges, such as increased unemployment, poverty, inflation, incessant gender-based violence (GBV), kidnappings, militancy, disease burden like the global covid-19 pandemic, economic hardship and other social vices in recent times which predispose individuals to developing mental illness. Observations in the south-south geopolitical zone of NIgeria today have revealed that cases of severe mental illnesses are on the increase among the young, the old, and the supposed working class as a result of stress reactions from home, place of work and others.  Moreover, media reports in recent times are laced with reports of suicide and senseless killings (potential tragic consequences of untreated depression- a mental illness). Similarly, cases of married couples in early marriage stage where either of the spouse or a woman becoming mentally ill after childbirth, violence among couples are equally unearth through such mediums.

For the fact that Mentally Ill Persons (MIPs) had been and are still members of the family, and there are no functional mental health care giving systems by the government coupled with notions of causal attributions around mental illness that are widespread among the populace, and there are limited societal support available for caregivers and families of MIPs, it then becomes the onerous responsibility of the family to provide care to MIPs who is a member of their families. Caregiving responsibilities can increase and change as the care recipient’s needs increase, which may result in additional strain on the caregiver. Most times, caregivers take up caregiving role in the absence of any knowledge about the causes of the illness, or the duration of caregiving, and demands of caregiving are incorporated into the regular family and personal responsibilities of the caregiver. Caregivers can be target of MIPs violent or abusive behaviours, may develop depressive breakdown in the long run as a result of caregiving burden, and may even lose their life in the course of caregiving to MIPs. The caregivers must adopt different strategies to deal with the behavioural problems of MIPs and to reduce the burden of caregiving and those of personal life demands. A lot of trials and errors may be involved in trying to adapt. These strategies may be positive or negative propelled by the caregivers  characteristics and other factors and not necessarily on scientifically proven methods of caregiving.

Though MIPs are common sight in South -South Geopolitical Zone of Nigeria, and care has been provided to them, there seems to be dearth of information in literature on the strategies adapted by caregivers for this role. It is important to understand caregivers adaptability strategies because it affects day-to-day functioning of the caregiver and family, the types and quality of care given to MIPs, and would undoubtedly influence the recovery and rehabilitation of MIPs. 

Where positive strategies are not adapted and palliative cares are not given to MIPs, there would be so many MIPs roaming the streets; these MIPs will turn bus stops and other public places into their abode. The MIPs will also constitute public nuisance; a lot of mentally ill children resulting from rape of the female MIPs will be on the increase and there will consequently be an upsurge in rate of crimes, abuse and other social vices in the study area and society at large. Since mental health problems are on the increase globally occasioned by the stresses of ongoing global covid-19 pandemic coupled with that of daily living. There is therefore the need to undertake a current study to investigate the adaptability strategies used by the caregivers for palliative care of MIPs in the study area. Addressing the issues raised in this study, will allow for identification of strategies adapted by caregivers from several cultural backgrounds of the zone, and the data supplied, will equally add to the existing scanty body of literature on caregivers adaptability strategies and palliative care of MIPs.

1.3       PURPOSE OF THE STUDY          

The main purpose of this study was to investigate Caregivers Adaptability Strategies and Palliative Care of Mentally Ill persons (MIPs) in South-South Geopolitical Zone, Nigeria.  Specifically, the study:

1.         Determined male and female caregivers causal attributions of mental illnesses in the study area.

2.         Assessed the adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area.

3.         Found out the types of palliative cares given by male and female caregivers in the study area.

4.         Determined the physical adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area.

5.         Ascertained the emotional adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area.

6.         Investigated the social adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area.

7.         Identified the financial adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area.

8.         Examined the religious adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area; and

9.         Determined the levels of adaptability that existed among caregivers of MIPs in the study area.

1.4     RESEARCH QUESTIONS

The following research questions guided the study:

1.              What are male and female caregivers causal attributions of mental illnesses in the study area?

2.              What are the adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area?

3.              What are the types of palliative cares given by male and female caregivers to MIPs in the study area?

4.              What are the physical adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area?

5.              What are the emotional adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area?

6.              What are the social adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area?

7.              What are the financial adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area?

8.              What are the religious adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area?

9.              What are the levels of adaptability that existed among caregivers of MIPs in the study                    area?

1.5       RESEARCH HYPOTHESES

The following null hypotheses were formulated to guide the study and tested at P >0.05 level of significance.

              HO₁:    There is no significant difference between the mean responses of male and female caregivers on physical adaptability strategies used for palliative care of MIPs in the study area.

              HO₂:    There is no significant difference between the mean responses of male and female caregivers on emotional adaptability strategies used for palliative care of MIPs in the study area.

              HO₃:    There is no significant difference between the mean responses of male and female caregivers on social adaptability strategies used for   palliative care of MIPs in the study area.

              HO4:   There is no significant difference between the mean responses of male and female caregivers on financial adaptability strategies used for palliative care of MIPs in the study area.

HO5: There is no significant difference between the mean responses of male and female caregivers on religious adaptability strategies used for palliative care of MIPs in the study area.

1.6       SIGNIFICANCE OF THE STUDY

The findings of the study will be immensely relevant to the following persons:  Family members, neighbours, and friends of Mentally Ill Persons (MIPs), Caregivers, Hospital authorities, Palliative care teams, clinicians and counselors, Pastors and chaplains, church authorities, Lawmakers, Non-Governmental Organizations (NGOs), Government and Researchers.

Family members, neighbours and friends who are the closest people to MIPs have significant influence, both positive and negative on MIPs.  Awareness of the numerous types of palliative cares for mentally ill persons will widen their knowledge on other types of care for the mentally ill and also help family members, neighbours, and friends to know the best   intervention and treatment options to make towards healthy living of MIPs. For the findings of this study to get to family members, friends and neighbors of MIPs, the findings will be communicated to them through workshops and discussions in various religious and social platforms.

Caregivers who might be struggling with palliative care giving role to MIPs will gain insights on other adaptability strategies which they might not have known that could be of immense help to their care giving role. Gaining this insight will assist them to be adaptive (adapt successfully) to the challenges of care giving. This information will get to caregivers at different palliative care centres through seminars and workshops that will be organized for them at the different psychiatric centres within and outside the study area.

 Hospital authorities, who are the ones to provide medical care to MIPs will discover other psychiatric centres that they might not have known that existed in the study area and what the causal attributions of severe mental illness, in the zone after reading the findings of this study.  This knowledge will help hospital authorities to strategize on sensitizing the people of the geopolitical zone on other causes of severe mental disorders that the people might have not known and develope immediate treatment strategies geared toward healthy living of MIPs and their families. The findings of this study which will be published in medical journals and quarterlies might spur the hospital authorities to extend their services to mental health care services rather than concentrate only on other health services in private and government hospitals as is the norm currently.

 Palliative care team   in and outside Nigeria, will be able to identify the causal attributions of severe mental illnesses in the study area. Identifying these causal attributions can help them develop sensitization plans and appropriate services suitable to the needs of MIPs and their families in the various psychiatric centres within the study area.  Moreover, the team might be able to expand their activities to South-south geopolitical Zone of Nigeria, as there is an increase in the number of MIPs in the zone. By publishing the findings of this study on the internet, journals and bulletins, the palliative care team might be able to start a home –based palliative care service which is currently absent in the zone.

Understanding the strategies adapted by caregivers of MIPs would be useful to Clinicians and Counselors as they plan intervention programs designed to help families with MIPs.  The findings of this work which will be published in clinical journals and bulletins will be useful in clarifying and deepening the awareness of professionals who work with MIPs as well as provide more information to other health professionals who may be interested in working with MIPs in the future.

Through seminars and symposia, Pastors and Chaplains who are concerned with the spiritual wellbeing of individuals and families, will be guided in their approach with caregivers and affected families at psychiatric centres in the study area. This will help them use the right approach to provide advice and counseling to the affected caregivers on strategies to manage their thoughts, emotions and actions which will impact on healthy living of MIPs and family members. This they could do during their visits to the affected caregivers in various psychiatric centres as they pray for and with the caregivers to encourage them in this phase of their family lives. The suggestions on adaptability strategies will serve as encouragement to the caregivers and families, thereby helping them adapt successfully.

The finding of this study will be made available to church authorities through reading materials like bulletins and internet. This can prompt Church authorities to plan towards building psychiatric palliative care centres in the zone as part of their Christian Social Responsibility rather than concentrate on building of gigantic worship centres as most of them are currently doing.

Lawmakers in the National and State Assemblies who will access the information through reading materials on their shelves and the internet will be guided to better inform interventions and advocate for improved mental health policy, pass a comprehensive bill on mental health   in the country as a whole and the states as part of their corporate social responsibility to mental health community.

Non-governmental Organizations (NGOs) working with families can use the adaptability strategies that the present study will unearth to plan intervention programmes geared towards sensitizing caregivers on the strategies that could be adapted to enhance healthy living of MIPs and their families. The adaptability strategies from the findings of this study will be made available to NGOs through publishing in magazines and quarterlies.

Government of the day will gain information on what the causal attributions of mental illnesses in the zone are. Gaining this information can help government through her agencies to sensitize the populace on the right approach to those with mental illnesses and to plan towards rendering subsidized mental health care services to improve treatment efficacy in the psychiatric centres in the zone. The findings can also spur government in the different states in the zone to establish psychiatric hospitals in the different states as some of the states in the zone do not have any at the time of this study. The information will get to government through her agencies, internet and health magazines.

It is the belief of the researcher that when the findings of this study are published, the information from this study will add to the body of existing literature on caregivers’ adaptability strategies and palliative care for MIPs and further stimulate other researchers to investigate into other aspects of palliative care for Mentally Ill Persons (MIPs) and/or caregivers Adaptability Strategies in the study area and beyond.

1.7       SCOPE OF THE STUDY

This study was delimited to private-owned psychiatric centres in South-south Geopolitical Zone, Nigeria. Male and female caregivers of Mentally Ill Persons (MIPs) made up the respondents for the study. Generally, the study investigated caregivers’ adaptability strategies and palliative care of MIPs in South-South Geopolitical Zone, Nigeria.  Specifically, the study determined male and female caregivers causal attributions of mental illnesses in South-south Geopolitical Zone, Nigeria; assessed the adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area; found out the types of palliative cares given by male and female caregivers to MIPs in the study area. The study also determined physical adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area; It further ascertained the emotional adaptability strategies used by male and female caregivers for palliative care of MIPs; The study went ahead to investigate the social adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area. The financial adaptability strategies used by male and female caregivers were also identified by the study; the study in addition examined the religious adaptability strategies used by male and female caregivers for palliative care of MIPs in the study area. Finally, the levels of adaptability that existed among caregivers of MIPs in the study area was also determined by the study.

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