Sorrows Profiles: Death, Grief, and Crisis in the Family

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Caretakers of children with sickle cell disease experienced chronic sorrow and employed both internal and external coping strategies to deal with it, which could be either effective or ineffective. This study recommends that health workers should routinely screen for chronic sorrow among caretakers of children with sickle cell disease and assist caretakers to strengthen effective coping strategies to ameliorate the negative effects of chronic sorrow. Children with SCD usually experience vaso -occlusion which results in pain, anemia, stroke, leg ulceration, organ damage and early mortality [ 3 ].

These patients experience recurrent painful crises, acute chest syndrome, priapism and other complications such as neurocognitive impairment and acute silent cerebral infarcts among others [ 3 , 4 ].

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These complications cause numerous hospitalizations and an alteration in body image in these patients [ 5 ]. Caretakers of children with SCD have reported challenges associated with the provision of physical, psychological and social care [ 6 , 7 ]. Repeated hospitalization, altered body image and changes that come with the disease may affect self-esteem and the social life of both caretakers and individuals with SCD [ 6 ].

This may result in psychological distress resulting in a phenomenon called Chronic Sorrow. Chronic sorrow is defined as the periodic recurrence of permanent, pervasive sadness or grief related feelings associated with significant loss [ 8 ].

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Disparity in this case is defined as the difference between the children who have SCD and those without. Although it is viewed as a normal reaction, chronic sorrow can progress to a pathological state such as depression if coping styles are ineffective [ 9 ]. Recognizing chronic sorrow among caretakers of patients with SCD and maladaptive coping strategies is useful in ensuring that effective strategies are designed to deal with negative effects in a timely manner [ 8 , 9 ].

In recent studies, chronic sorrow has been described among caregivers of children with various chronic conditions such as mental illness, diabetes, epilepsy, alagille syndrome and cerebral palsy [ 10 , 11 , 12 , 13 , 14 , 15 ]. However, most of these studies were conducted in high income countries. Few studies have been conducted in low and middle-income countries to explore chronic sorrow.

Therefore, this study describes the existence of chronic sorrow, triggers of grief related emotions and coping strategies used by caretakers of children with sickle cell disease in a low-income country. Mulago is one of two national referral hospitals in Uganda and also serves as the teaching hospital for Makerere University College of Health Sciences and several other training institutions in Uganda. The hospital has a bed capacity of and an annual inpatient turnover of , [ 2 ].

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The sickle cell clinic runs cost-free daily services and receives about — patients each week. Mulago was chosen as the study site because it is the only public institution with a specialized clinic for SCD patients. This study employed a descriptive qualitative design using face to face in-depth interview method for data collection. Twelve in-depth interviews IDI were conducted.

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This sample size was guided by the principle of saturation where data was collected until the researchers could not find new information from the participants. Participants included adult caretakers of children diagnosed with SCD aged one to 18 years, who had taken care of the same patient for at least 1 year.

The study excluded caretakers whose children were in sickle cell crisis at the time of data collection. Purposive sampling was used to select study participants who were articulate, could easily and clearly describe their experiences and consented to participate in the study. In order to have a rich description of the phenomenon, both men and women were purposively selected to participate in the study. Caretakers were approached and asked whether they were interested in participating in a study about SCD.

An explanation of the research was provided and written informed consent was obtained from those caretakers who agreed to be interviewed. The in-depth interviews were conducted by nurses who were trained for 2 days prior to data collection. In order to limit challenges associated with power differences, the interviewers were neither dressed in uniform nor were they staff of the sickle cell clinic.

Privacy was ensured during the interviews by interviewing participants in a private room. The interviews were conducted in Luganda which is the most commonly spoken language in the central part of Uganda. All interviews were audio recorded with the participants permission. It is designed to evaluate the occurrence of chronic sorrow 1—6 questions , intensity of the sorrow, milestones at which chronic sorrow occurred, individualized coping factors, support from others and advice caregivers received from others.

The interview guide was translated into Luganda and pretested to ensure that the meanings of the questions were clear and easily understood in Luganda. This helped to assess the flow of the interview, the probing questions and how long the interviews would take.

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Pre-testing was done with 2 caretakers of cancer patients in Mulago Hospital. The interview guide was modified appropriately prior to data collection. The interviewers established rapport with the respondent to build trust and encourage free expression of emotions. Data were collected from February to March Audio taped in-depth interviews were transcribed verbatim and translated into English. The interviews were read several times to obtain a sense of the entire script. Data was analysed using deductive thematic analysis. Deductive thematic analysis was used because the researchers conceptualised the study from a theory of chronic sorrow where they narrowed down to themes were identified [ 8 ]. The middle range theory of chronic sorrow gives elaborate explanation about this phenomenon.

The theorists explain that when there is a single or on-going significant loss, it results in disparity where there is a difference between a child with SCD and a healthy child. In this study the significant loss was having a child with SCD.

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The disparity leads to chronic sorrow which is pervasive, periodic or permanent in nature. When experiencing chronic sorrow, individuals express sadness or grief related feelings which are triggered by different factors such as the when the child is sick or stigma related to the loss. When chronic sorrow is experienced, caretakers employ internal or external coping strategies which may or may not be effective.

The effective methods shorten the period of sorrow and increase comfort of the caretaker. The whole process is repeated when a trigger event occurs which make chronic sorrow cyclic. During analysis, researchers identified four main themes from the framework namely; disparity, chronic sorrow, triggers and coping strategies. The texts of the transcripts were read and divided into condensed meaningful units, abstracted and labelled with a code. The codes were compared based on similarities and differences and were then sorted into categories.

Finally, the categories were placed under different themes identified from the framework of the theory of chronic sorrow. The analysis was done by four individuals who developed codes and categories independently, this was proceeded by a group discussion to compare codes from each script and get consensus. To increase the rigour of the study, time was taken to build rapport and trust with informants; this helped the informants to feel at ease and share their experiences freely and in depth. There was also continuous non-threatening observation of nonverbal clues. To facilitate transferability, a clear and distinct description of the characteristics of study participants, data collection methods and the process of analysis was done.

A rich and robust presentation of the findings with appropriate verbatim participant quotations was done. Disparity is the difference created by those experiencing the loss and those without loss. In this case, having a child with SCD was on-going loss.

Due of the nature of SCD, the children with SCD fail to thrive as the normal children, this precipitated sadness among caregivers. This was noted by a caretaker who said;. I did not know what to do because I thought that my child is going to die. I knew sickle cell patients do not live long. Having disparity led to experiencing chronic sorrow which is presented below.

Chronic sorrow is known to be pervasive, periodic or permanent and potentially progressive in nature and all these manifestations were articulated by caretakers. I feel sorry for myself, I can longer go for any outing. The emotions most often re-experienced were worry which was said by 7 out of 9 participants, hopelessness 6 out of 9 participants which was mentioned twelve times during the course of their interview, emotional pain 5 out of 9 participants cited fifteen times during the course of their interview, feeling overwhelmed 5 out of 9 participants cited eleven times during the interviews, sadness 5 out of 9 , and distress 5 out of 9.

The least frequently re-experienced emotions were anger 1 out of 9 , heartbreak 2 out of 9 and fear 3 out of 9. God willing, she will grow to a certain age because no one with SCD survives for long. I felt the severe pain I experienced in the beginning, I felt dizziness, and got severe headache…sometimes I get overwhelmed, I think to myself, why am I suffering? I should let this child to die. It is so painful. I have nothing to do and I cannot change the results.

Grief-related feelings were triggered by factors that were categorized as health facility, health worker related, disease related and support related triggers. The most commonly quoted triggers were disease related triggers which were cited forty times, followed by support related triggers mentioned eighteen times and lastly health facility or health worker related triggers cited three times throughout the interviews. The most common disease related triggers included; child being sick 8 out of 9 , being uncertain of the future 8 out of 9 , and chronicity of the disease 6 out of The least common disease related triggers were thinking of anyone who died of SCD 1 out of 9 , lifelong medication given to the child 1 out of 9 , and seeing other children in pain or having SCD 3 out of 9.

I feel finished and start wondering if he is going to stay alive. IDI 1. But my brother told me that children with SCD, the end result is death, I should not count her among my children.

Now he may be fine and after a few hours he becomes very sick. They are sickly all the time and I worry all the time.