EFFECT OF FAMILY COUNSELLING ON PSYCHOLOGICAL DISTRESS AMONG CAREGIVERS OF CHILDREN WITH SICKLE CELL ANAEMIA IN FEDERAL MEDICAL CENTRE KEFFI. 

SUMMARY

Background: Sickle Cell Anaemia (SCA) is a haematological disorder of red blood cells, caused by mutation in beta globin gene. Caring for patients with the disorder poses a significant psychological burden on the sufferers, the caregivers and their families, thereby affecting their quality of life. Family counselling has been found to be vital in relieving the psychological distress and improving the quality of life.

Objectives: The study was aimed at determining the effect of family counselling on psychological distress of family caregivers of children with sickle cell anaemia.

Method: The study was a randomised controlled trial involving caregivers of children with sickle cell anaemia patients presenting in the sickle cell disease clinic at the FMC Keffi.    The participants that satisfied the inclusion criteria were consecutively selected and randomized into Intervention and Control groups, with 28 participants in each group. Data was collected on the socio demographic characteristics of the participants, knowledge of sickle cell anaemia, clinical burden of the disease and indices of assessing the impact of the disorder on family interaction. The primary outcome of intervention was psychological distress measured using the 12 item general health questionnaire. The Intervention group had structured family counselling, while the Control group had routine counselling at four weekly intervals. Physical examination was done and routine medications were prescribed for all the patients at every visit.

Chi square test was used to compare categorical variables such as gender, socioeconomic status and marital status. Student t-test was used to compare the means of the knowledge score. P values of < 0.05 were considered significant for all analysis.

Results: The study revealed that caregivers of children with Sickle Cell Anaemia were psychologically distressed. At baseline, one participant in the intervention group had mild psychological distress. Those with moderate psychological distress were 25% and severe psychological distress was present in 71.4%. After the intervention, those with mild psychological distress were 28.6%, 71.4% had moderate psychological distress but none had severe psychological distress. There was a statistically significant difference in the level of psychological distress in the Intervention group at baseline and post intervention. P=0.001.  Conclusion and recommendations:  Findings from this study showed that caregivers of children with SCA experienced psychological distress from the children‟s illness.

Interventions such as family counselling were found to ameliorate the psychological distress.

Therefore, structured family counselling should be offered to caregivers of children with SCA as this will reduce psychological distress in them and improve the quality of life of the patients and their caregivers.

 

TABLE OF CONTENTS

Declaration     -------------------------------------------------------------------      i

Acknowledgement    -------------------------------------------------------------------    ii

Dedication    -------------------------------------------------------------------       iii

Certification     -------------------------------------------------------------------     iv

Table of Contents  -------------------------------------------------------------------    v

List of Tables     -------------------------------------------------------------------    vii

List of figures    ------------------------------------------------------------------    viii

List of Abbreviations ------------------------------------------------------------------    ix

Summary  -------------------------------------------------------------------    1

Chapter One: Introduction  -------------------------------------------------------    3

1.1 Introduction  -------------------------------------------------------    3

1.2 Statement of the problem  -------------------------------------------------------    7

1.3 Aim and Objectives  --------------------------------------------------------    8

1.4 Justification for the study  -------------------------------------------------------    8

Chapter Two: Literature Review  --------------------------------------------    10

2.1 Classification of Sickle Cell Disease -------------------------------------------    10

2.2  Epidemiology of Sickle cell Anaemia  -----------------------------------------    11

2.3 Pathophysiology of Sickle cell Anaemia  --------------------------------------    15

2.4 Complications of Sickle Cell Anaemia  --------------------------------------    21

2.5  Management of Sickle cell Anaemia  --------------------------------------    29

2.6 Overview of family counselling  -------------------------------------    34

2.7 Role of family counselling in management of Sickle Cell Anaemia --------    44

2.8 Family counselling and psychological distress in management of

Sickle Cell Anaemia  -----------------------------------------    48

Chapter Three: Materials and Method  ---------------------------------------    51

3.1 Study Area    -----------------------------------------------     51

3.2 Study Population   --------------------------------------------------    51  3.3 Study design  -------------------------------------------------    51   vi

3.4 Study Hypothesis  -------------------------------------------------------    52

3.5 Sample size determination  ------------------------------------------------------    52

3.6 Sampling Method  -------------------------------------------------------    53

3.7 Study protocol    ---------------------------------------------------------    53

3.8 Data Analysis    --------------------------------------------------------------    59

3.9 Ethical Consideration  ------------------------------------------------------------    59

Chapter Four: Results  ------------------------------------------------------------    60

4.1 Socio demographic characteristics of the study participants  ---------------------     61

4.2 Level of knowledge of Sickle Cell Anaemia among study participants ----------  66

4.3  Pre intervention level of psychological distress among study participants  -----  67

4.4 Post intervention level of psychological distress among study participants  ----    68

4.5 Comparison of level of psychological distress in the two groups  -------------    70

Chapter Five: Discussion, Conclusion and Recommendations  ----------------    72

5.1 Socio demographic characteristics of the study participants  ---------------    72

5.2 Level of knowledge of Sickle Cell Anaemia among the study participants ---    75

5.3 Pre-Intervention level of psychological distress among the study participants     76

5.4 Post-Intervention level of psychological distress among the study participants    77

5.5 Conclusion    -------------------------------------------------------------    79

5.6 Recommendations  ------------------------------------------------------------    79

5.7 Relevance of the study to Family Medicine  -----------------------------------    80

5.8 Strengths and Limitations of the Study  -------------------------------------    81

References  ----------------------------------------------     82

           

 

CHAPTER ONE:

 INTRODUCTION

 

1.1        INTRODUCTION

 

Sickle cell disease is a group of haematological disorders of the red blood cells. This group of disorders includes sickle cell anaemia (Hb-SS), Sickle cell haemoglobin C disease (Hb-SC), and sickle cell β-Thalassemia (Sβ thal).¹An individual is said to have sickle cell trait when he has one sickled gene along with a normal  gene but does not manifest the symptoms. Sickle cell anaemia [Hb-SS] , the homozygous haemoglobin S state is the most severe of all sickle cell diseases. It affects people worldwide, predominantly the blacks in Africa, Europe, America, Arabs and those of Asian ancestry.^2,3 The prevalence of sickle cell anaemia in the black race may be as high as 25 – 30% in some countries.¹  In Nigeria, the prevalence of Hb- SS is about 2%.^1,2,3

 

Sickle cell anaemia arises from a single amino acid substitution in one of the component proteins of haemoglobin.  It is caused by mutation in beta globin gene causing hydrophilic Glutamic acid to be replaced by hydrophobic Valine at position six.⁴ This gives the red blood cell the tendency to sickle or deform into a crescent shape in deoxygenated state. The deformed red blood cells create blockage in small vessels leading to oxygen deprivation and tissue damage.² Sickle cell disease is one of the major causes of morbidity and mortality that can account for prolonged hospital stay, recurrent blood transfusions, delayed growth and reduced physical activities.⁵ 

 

The symptoms associated with sickle cell anaemia appear to stem from disruption of normal circulation caused by sickled red blood cells. The manifestations are age dependent.

Symptoms usually appear during the first or second years of life most commonly with hand and foot swelling. Sickle cell crisis is a recurrent episodic phenomenon which may occur in sickle cell anaemia (SCA). It may last a few to several days and it is characterised by severe pains, fever and debilitation.^4,6

 

Painful crises are one of the most common causes of distress among patients with SCA and account for about 90% of SCA related hospital admissions.  Frequency of crisis is variable. Some individuals have as many as six annually, others have episodes at great intervals while some do not have at all.⁷ Bones are the usual sites for vaso-occlusion during the crisis and patients may present with pain in the extremities, abdomen, chest, head and other parts of the body.⁴ Other forms of presentations are anaemia (from haemolysis of sickled red cells), aplastic crisis following infection with parvovirus, sequestration crisis, asplenism, stroke, priapism and delayed growth.^6,8 The precipitants of vaso-occlusive crisis include dehydration, infection, hypoxia, physical and emotional stress.^4,6,7  Prevention of vaso-occlusive crisis is of paramount importance and is a primary goal of long term management of SCA.   

 

Progress in scientific knowledge of sickle cell anaemia has made it possible for patients to have access to treatment techniques that may increase their life expectancy.^3,7 With this achievement, attention is now focused on the psychosocial dimensions of the illness in order to achieve a better quality of life for the subject and their families.¹ Sickle cell anaemia poses a significant psychosocial burden on the sufferers, the caregivers and their families.³

 

The Family is defined by the American Academy of Family Physicians as “a group of individuals with a continuing legal, genetic and or emotional relationship”.⁹ It remains the most basic relational unit and intimate social environment in our society and has a measure of influence on the physical and mental health of its members.¹⁰ The family is the primary source of health beliefs, health-related behaviour and emotional support.^10,11

 

By understanding how the family influences health, the family physician has the opportunity to anticipate and reduce the adverse effects of family stress and use the family as a resource in the care of the patient.¹⁰ Within the family, children with SCA need optimal family support, understanding and care. Such favourable environment has been shown to be a good prognostic index.¹²

 

Family caregiver refers to an unpaid family member, friend or relative who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of tasks from bathing, dressing and taking medications.¹³ A recent study in Bethesda USA estimated that there are 44 million SCA caregivers over the age of 18 years.  Most caregivers are women who handle time consuming and difficult tasks like personal care while 40% of the caregivers are men.¹⁴ Family caregivers are essential members of the health care team.  Managed care has shifted most of the burden of care from professionals in the hospital to family members at home without providing adequate support.¹⁰

 

The patients and their families are faced with several challenges such as daily use of routine drugs, recurrent or frequent illnesses, need for blood transfusion, regular clinic attendance and hospitalisation. Hence, family members of these patients tend to have psychological  distress.³

 

Psychological distress in families with SCA is known to aggravate problems of the disorder.

Caregivers of children with chronic diseases often report increased parental distress and negative affect.¹¹ Studies have shown that caregivers/parents of children with SCA have  alarming high rates of distress.^13,15

 

Previous research has consistently found that approximately 24% of parents of young children with SCA report clinically significant levels of psychological distress similar to that of adolescents with SCA.^15,16 A study in USA found that 35% of the primary caregivers in their sample met criteria for chronically significant level of poor adjustment and 65% of them were at risk.¹⁵

 

Psychological distress in parents of children with sickle cell anaemia is similar to the higher rate found in individuals diagnosed with other medical conditions.¹⁶ Fifty per cent of caregivers of children with SCA were found to be at risk of clinical depression compared to 34% of parents of children with HIV.¹⁵

 

Family counselling is vital in relieving psychological distress and improving quality of care for the patient.³ It is a form of psychological therapy, which gives the family the tool it needs to address its own problems. Counselling is done by creating an atmosphere, in which communication is easier and members are expected to speak freely.¹⁰ Research has shown that counselling delivered to caregivers of patients with chronic disease reduces the negative effects and improve caregivers coping skills, knowledge and quality of life. It decreases patient symptoms, reduces mortality and improves patients‟ physical and mental state.¹³ It is important in ameliorating the effect of the disease impact on the wellbeing of patients and caregivers.    

 

 

1.2       STATEMENT OF THE PROBLEM

In Nigeria, it has been estimated that 150,000 children are born with SCA annually with a prevalence of 20 - 30 per thousand live births. It is currently estimated that 25% of Nigerians have the sickle cell trait while 1 – 3% have sickle cell anaemia.³   

 

Sickle cell anaemia is a disease with several complications which could be life threatening.

The management consumes a substantial part of the meagre financial resources of the family.  Sickle cell anaemia has been responsible for high morbidity and mortality in addition to decreased productivity in the black race.^8,17

 

It is now widely recognised that when children have chronic physical illness like sickle cell anaemia, the developmental course of the illness is jointly influenced by physical, psychological and social factors.¹² Understanding the interdependence of these factors has been shown to be important in management of these children and their families.¹  The level of support given to sickle cell anaemia patients may reflect the dynamics of intra-family  relationship and emotional state of the family members.¹⁰

 

Despite the importance of a conducive home environment to the families of sickle cell anaemia patients, the families suffer higher rates of depression and anxiety.¹ These families often restrict their social activities and reduce their time at work.  The impact on the family is worst in the developing countries such as Nigeria because of inadequate social welfare and health care services. An assessment of the burden of the disease on families is desirable.³

 

A study in Nigeria showed that 88% of families report adverse intra-family conditions resulting from care of sickle cell disease patients.²

There are different studies on the impact of SCA on families as care givers of the affected children but attention to the psychological burden of the disease on families has been inadequate.  

 

1.3       AIM AND OBJECTIVES OF THE STUDY

 

AIM

The study aimed to determine the effect of family counselling on psychological distress on family caregivers of children with sickle cell anaemia in order to improve the quality of care of the SCA patients.

 

OBJECTIVES

1. To determine the socio demographic characteristics of the study participants.
2. To determine the level of knowledge of SCA of the study participants.
3. To determine the baseline (pre-intervention) level of psychological distress in family caregivers of children with sickle cell anaemia.
4. To determine effect of family counselling on psychological distress amongst family caregivers of children with sickle cell anaemia.
5. To compare level of psychological distress between the family caregivers of children with SCA who received family counselling and those who did not receive such counselling.

 

1.4       JUSTIFICATION OF THE STUDY TO FAMILY MEDICINE

 

 

Sickle cell anaemia is a chronic hereditary disorder, most common in the black race.

Symptoms begin in infancy and persist throughout life. Because of the chronicity and severity of disorders, caregivers must guide their children in demanding daily management of this condition.

Childhood chronic illness represents one extreme source of parental strain, for which a caregiver must manage the task of parenting in addition to the social and emotional burdens of caring for the child.        Counselling of caregivers has been found to relief psychological distress. It is expected that family care givers who receive adequate counselling are better equipped to provide supportive care to their patients. They are expected to cope better with psychological distress and overall care of the patient is improved. It is more cost effective than administration of  frequent medications, though family counselling cannot replace the need for medication but serves as an adjunct to medication in management of patients with SCA.

EFFECT OF FAMILY COUNSELLING ON PSYCHOLOGICAL DISTRESS AMONG CAREGIVERS OF CHILDREN WITH SICKLE CELL ANAEMIA IN FEDERAL MEDICAL CENTRE KEFFI.

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