THE CONCEPT OF GRIEF IN PATIENTS WITH AMYOTROPHIC 1

Concept of Grief in Individuals with Amyotrophic Lateral Sclerosis

Research interest in the development of effective grieving interventions has increased

notably in recent years.

The Merriam-Webster dictionary defines grief as “a deep a poignant distress caused by or

as if by bereavement.” According to Merriam-Webster the term grief was developed during the

fifteenth century. Grief is a term derived from Middle English, gref, meaning heavy or grievous.

Grief due to illness is not defined in Merriam-Webster dictionary.

This writer has focused on grief in persons with and advanced illness, specifically

Amyotrophic Lateral Sclerosis.

Review of Literature

This writer conducted a review of literature from 2005 to present utilizing electronic

databases such as Ovid, PubMed, CINAHL, and EBSCOhost. Key terms used during the search

include the following: grief, grief and loss, grief and ALS and grief and illness. This writer was

unable to find any articles tying grief with ALS, but this writer found research articles on grief,

sorrow and loss.

Experiences of loss and chronic sorrow in persons with severe chronic illness

Ahlstrom (2005) conducted a research study to describe the losses experienced by

individuals afflicted with severe chronic physical illnesses coupled with the occurrence of

sorrow. Ahlstrom suggests that the concept of loss is generated when there is a disparity

between the currently reality, created by the loss and the desired reality. It is discussed in this

article how the existence of chronic sorrow will continue as long as the disparity created by the

loss remains. Examples of these disparities include the anniversary of the initial diagnosis, the

appearance of a new impairment, and the first time they utilized a wheelchair as a mode of

transportation.

Ahlstrom (2005) hypothesized that individuals with chronic illness experienced chronic

loss and sorrow. The aim of the study is to describe the loss experienced by individuals with

afflicted with chronic illnesses and who may experience chronic sorrow and to identify

meaningful underlying patterns related to these losses in the form of chronic sorrow through and

abductive approach analysis.

Ahlstrom (2005) studied thirty individuals of working age with average diseases duration

of eighteen years. All individuals involved had a personal assistance for at least three months

due to decrease in physical disability. A letter was sent to each individual and their personal

assistant explaining the purpose of the study. A follow up phone call was made 3 to 5 days later

to determine if the individuals were willing to participate. Once the individuals accepted to be

part of the research study, two interviews were set up in the individual’s home. Interviews were

in a conversational form and each interview was audio taped and then transcribed word by word.

Ahlstrom (2005) divided the interview in two, first day the questions refer to falling ill, problems

of everyday life and family situations. The second interview was a follow up and delved deeper

than the first. The second interview also discussed issues such as integrity, autonomy and quality

of life.

Ahlstrom (2005) found that the hypothesis was correct that individuals with chronic

illness do suffer from chronic sorrow. The study showed that all individuals had experience

repeated physical, emotional and social losses. All participants in the study reported repeated

losses such as loss of bodily function, loss of relationship, loss of autonomy, loss of life

imagined, loss of identity, loss of human worth, dignity and an altered self image. The study by

Ahlstrom also showed that losses are associated with periods of sorrow, which is normal

considering the circumstances.

The findings of the study by Ahlstrom (2005) are important to future research because

little research has been done on chronic sorrow or loss related to illness. The study had a large

sample size, and the interview process yield large amounts of data. The implications to

advanced nursing practice are the importance of recognizing the normalcy of grieving, most

importantly the nurse should invite the patient to talk about their losses, and support the patient

by actively listening as well as allowing the individual to express their feelings. This will allow

nurses to provide comfort despite the occurrence of chronic sorrow.

Exploration of nurse practitioner practice with clients who are grieving

White and Ferszt (2009) conducted a study with the purpose of describing the clinical

practice of nurse practitioners (NPs), providing primary care to clients who are grieving. The

qualitative study explored NPs assessment, plan of care, and evaluation of healthcare outcomes

for their clients who were grieving clients. The study included interviews with 9 NPs who

provide whose primary role is that of providing primary care.

White and Ferszt (2009) focused on the role of the NPs when dealing with loss. The

authors attempted to answer the following questions: What signs and symptoms do NPs assess in

their clients who are grieving? What strategies do NPs incorporate in their plan of care for

clients who are grieving? What health outcomes do NPs evaluate in the primary care setting

when clients are grieving?

A purposive sample of nine NPs known for their comprehensive, holistic approach to

clinical practice was selected (White & Ferszt, 2009, p. 233). Selection criteria for study

included NPs certified by the American Nurses Credentialing Center, clinical practice in primary

care for a minimum of 5 years and finally to be able to participate in a 2 to 1 1/2 hour interview.

The mean age of the participants was 50.3 years and they had a mean of 14.4 years of experience

as an NP (White & Ferszt, 2009)

The instrument used for this study included a set of semi structure interviews to be used

with the participants. These interviews were recorded and transcribed verbatim. Before the first

interview the interview guide was mailed to the participants and they were asked to reflect in a

specific case that that best exemplified his or her clinical practice with a client that was grieving.

The interview was schedule within a month of receipt of the interview guide.

The results of this study showed that thorough assessments of clients with careful

attention to physical, functional, and emotional indicators were the hallmarks of their

descriptions of care (White & Ferszt, 2009). The assessment of clients included three major

categories: physical complaints, practice with grieving clients, overall functioning, assessment of

emotional wellbeing and coping. The NPs incorporated several interventions when dealing with

clients who are grieving such as validation, prescriptions for self-care and intentional scheduling

of visits, teaching, referral and medication. Some participants suggested that better

communication be implemented such as notices of patient loss prior to the appointment would be

beneficial.

According to White and Ferszt (2009), other findings suggest that personal beliefs related

to grief may influence the approach to healthcare delivery. Therefore, the NP should evaluate

their own believes and assumptions before initiating a plan of care for an individual who is

grieving. Giving the client the opportunity to tell their story is beneficial to the attainment of

trust.

The study by White and Ferszt (2009) provides evidence to health care providers of the

relationship between personal beliefs, assumptions and experiences with grief. This study is

beneficial to advance practice nurses as it helps identify that personal beliefs, assumptions and

pass experiences with grief could greatly influence the way that NPs listens to the client.

Moreover, this study highlights the importance of future inquiry into the concept of grief and the

need for ongoing education and reflection in practice for NPs caring for grieving individuals

(White & Ferszt, 2009).

Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and

ICD 11

Prigerson et al. (2009)conducted a study with the goal of validating the criteria for

prolonged grief disorder (PGD) proposed for inclusion in the diagnostic and statistical manual of

mental disorders (DSM-V) and the international classification of diseases, 11th revision (ICD-

11). The purpose of the inclusion was to determine the psychometric validity of criteria for

prolonged grief disorder (PGD) to enhance the detection and potential treatment of bereaved

individuals at heightened risk of persistent distress and dysfunction.

Prigerson et al. (2009) focused on validating that grief may be pathological. The study

consisted of two hundred ninety one bereaved individuals, who were interviewed three times at

intervals of 0-6 months, 6-12 months and 12-24 months post loss. The inclusion criteria included

significant loss that include the experience of yearning as well at least five of following

symptoms daily or to a disabling degree:, feeling emotionally numb, stunned or that life is

meaningless, experiencing mistrust, bitterness over the loss, difficulty accepting the loss, identity

confusion, avoidance of the reality of the loss, or difficulty moving on with life.

Utilizing the Inventory of Complicated Grief –Revised (ICG-R), Prigerson et al. (2009)

evaluated prolonged grief disorder. Researchers also used the Structured Clinical Interview

(SCID) for DSM-IV to assess psychiatric disorders. Patients were also interviewed by utilizing

the Yale Evaluation of Suicidality Screening, positive answers to four or more questions of this

screening tool was considered positive for having suicidal ideation.

The researchers utilized an item response theory (IRT) to obtain the most informative

PGD symptoms from structured interviews of individuals that had recently experience a loss.

Results showed that individuals diagnosed with PGD 6-12 months after the loss are at risk for

mental health and functional impairment. The study shows that PGD should be included in the

DSM-V and ICD-11 as a mental disorder.

This study is relevant to the health care practitioner because it provides evidence that

communication is important when dealing with grieving individuals. The providers should take

in consideration that individuals grieve in different ways and each provider should assess for the

necessity of more specialize treatment before the onset of PGD. Furthermore, the availability of

a standardized way to diagnose PGD assists providers to identify the minority of people who fail

to adjust successfully to a loss.

Demoralization, anhedonia and grief in patients with severe physical illness

Clarke, Kissane, Trauer, and Smith (2005) conducted a study to determine if

classification of demoralization was truly characterized by feelings of being unable to cope,

distress, apprehension, helplessness, hopelessness, personal failing and aloneness; anhedonia by

a loss of ability to experience pleasure in things and accompanying loss of interest and grief by

feelings of loss with intrusive thoughts about the loss, distress and pining.

Clarke et al. (2005) focused on examining the phenomena of demoralization on

individuals who suffered from an illness that does not have curative treatment such as terminal

cancer or motor neuron disease (MND). The study consisted of two hundred and seventy one

participants with non curable illness. Exclusion criteria were being too unwell to complete the

interview and self-report questionnaires, and inadequate command of the English language

(Clarke et al., 2005, p. 96).

Clarke et al. (2005) utilized an adaptation of the Monash Interview for Liaison Psychiatry

(MILP) to evaluate demoralization, anhedonia, and grief. The interview consisted of

demographic and illness section and eighty six questions in the domain of somatic symptoms

such as: mood, self-concept, suicidal ideation and functioning. Most interviews were conducted

in the patients' homes; inpatient individuals were interviewed in a private setting. The researchers

utilized a combination of different instruments to obtain the final result of the research. Some of

the scales were modified to meet the need of the research. The scales utilizes were as follows:

The Physical Functioning Scale of the European Organization for Research and Treatment of

Cancer (EORTC) Quality of Life Questionnaire Core 30 Items (QLQ-C30) and a visual analogue

pain scale were utilized to measure the aspect for physical health and functioning. The Beck

Depression Inventory (BDI) was utilized to assess the depression. Another instrument utilized

was the Patient Health Questionnaire (PHQ-19), this questionnaire is comprised of 9 question

and utilized to assess the presence of the DSM-IV criteria for major depressive disorders; this

questionnaire is a 4-point Likert Scale response questionnaire. The degree of hopelessness was

assessed and measured by utilizing the Beck Hopelessness Scale (BHS). The Beck Scale for

Suicidal Ideation (SSI) was utilized to measure the presence of suicidal thought and desire for

death. Dispositional or trait optimism was measured using the revised Life Orientation Test

(LOT-R, 20). Dispositional optimism has been shown to correlate positively with active coping

and negatively with avoidance in cancer patients (Clarke et al., 2005). Trait anxiety was

measured with the State-Trait Anxiety Inventory (STAI, 22). Finally, the Medical Coping Modes

Questionnaire (MCMQ) was utilized to measure the copying styles of the patients interviewed.

This self-report is comprised of a 4-point Likert Scale which contains 3 categories:

confrontation, avoidance, and acceptance-resignation.

This study provides evidence through its result of interviews that the assessment of

demoralization, anhedonia, and grief is vital to the patient’s mental well being. The results mirror

the previous finding of three distinct dimensions of demoralization, anhedonia and grief (Clarke

et al., 2005). The results support the notion that the three constructs demoralization, anhedonia

and grief are each components of current conceptualizations of depression. The study is

beneficial to advanced practice because it provides evidence that there is a relationship between

demoralization, anhedonia and grief.

Internet-based cognitive-behavioral therapy for complicated grief: A randomized

controlled trial

Wagner, Knaevelsrud, and Maercker (2005) recognized the importance of treatment for

complicated grief (CG) and developed a research in the development of effective bereavement

interventions. Research has shown that therapeutic interventions are important to reducing the

symptoms of CG. Wagner et al. (2006) defined grief a depression and anxiety due to a traumatic

loss. Researchers also recognized that little research has been on CG have been performed.

Wagner et al. (2006) hypothesized that an internet based treatment approach could proof to be

effective for bereaved people suffering from CG.

Wagner et al. (2006) conducted an internet based control study. Fifty five participants

passed the screening and continued into the research study. The study was aimed at individuals

that had lost a significant person in the last 14 months prior to treatment and who were diagnosed

with CG. The intervention was conducted over the internet; the intervention consisted of 3 week

interventions that consisted of two forty five minute sessions per week. The study was comprised

of 2 groups a treatment group and a waiting group. The participants were randomly allocated to

the treatment group or the control group. According to Wagner et al. (2006) the purpose of the

intervention was to determine if the loss of a loved one will affect the mental health of the

bereaved individual.

According to Wagner et al. (2006), treatment outcomes were measured by self-rated

questionnaires administered through the internet only. The researchers utilized Horowitz’s stress

response model of CG to measure grief. Wagner et al. (2006) utilized The Impact of Event Scale

(IES), a failure to adapt scale, and the depression and anxiety subscales of the Brief Symptom

Inventory (BSI) to assess treatment outcomes.

The results of Wagner et al. (2006) showed significant improvement between the

treatment and the control group. The study showed that the overall symptom of CG was reduced

significantly relative to the patients in the control group whose symptoms remained unchanged.

The study shows the grieving individuals desire more communication about how to deal with the

symptoms of CG. Wagner et al. (2006) reported that 83% of the participants felt that contact with

the therapist was personal even though it occurred over the internet. Also, 45% of participants

indicated that treatment was quite effective.

This study is relevant to the health care provider as it provides evidence of the

importance of communication with grieving patients. Results show that grieving individuals

desire communication whether it is achieved thru email, website or in person. The study

encourages communication between the patient and the provider in an effort to help with dealing

with the symptoms of CG.

A Concept Analysis: The Grieving Process for Nurses

Brunelli (2005) discussed the grief surrounding nurses when they lose a patient who

frequently has prolonged suffering with little comfort. According to the concept analysis nurses

have been taught how to take of patients, but have never been taught how to teach a family or

patient to grieve. The concept paper reports that in order nurses who work in a setting that

revolves around the patient diagnosis that have poor prognoses, the repetitive loss of patient put

not only a physical, but also a mental and spiritual burden on the nurse’s professional and

personal life.

According to Brunelli (2005) hospitals need to recognize the need for grieving support

groups where multidisciplinary teams are involved to include nursing, physicians, pastoral care,

and psychology. The author of the concept paper also suggests that grieving process involves

going through steps to arrive at a resolution or acceptance of the loss or death (Brunelli, 2005, p.

128). This writer found the concept paper significant as it provides evidence of the impact of

grief in not only the patient and family, but also on the provider.

Death, Grief, and the Home Health Worker: A Systems Approach

Weeber (2005) discusses the stages of grief for the dying patient as well as the survivor,

in addition to the differences between normal and abnormal grief. The article also discusses

strategies that could be use to cope with grief. According to Weeber (2005), 7 stages of survivor

grief are currently used. The idea that people may go through a series of stages of grief was

revealed by the pioneering work of (Kubler-Ross 1969 as cited in Weeber, 2005). The stages of

grief are as follows: denial in which patient refuse to believe, second is anger, which is displaced

kind of anger toward everyone in this person’s life. Third is bargaining, this is when the

individual prays to God to help them and in return they will change their ways. Fourth is

depression, this is when the individual mourns due to their illness and lastly acceptance, when

the individual finally accepts the fact that death is inevitable.

The article also describes 7 survivor stages that were later developed. These stages are

shock and denial, disorganization, volatile reactions, guilt, loss and loneliness, relief, and

reestablishment. Shock and denial refers to not believing death has occurred, providing the

grieving person with a temporary safe place from the ugly truth. Disorganization is this stage

people feel out of touch and nothing makes sense. Volatile reactions grieving individuals feel

anger, frustration, and helplessness. Guilt is anger and reaction turned inward. This stage could

result in depression. Loss and loneliness in this stage people feel alone, but they try to resume

normalcy. In the stage of relief is when the grieving individual explores new social relationships,

this stage does not diminish the feeling of love for the decease. Reestablishment is the beginning

of life without the deceased.

According to Weeber (2005) normal grieving is when grieving is over and the individual

is at the stage of reestablishment and the person is able to cope with the loss. Normal grieving

resolves itself on its own. Abnormal grieving is when the individual does not appear to exhibit

any feelings after the death of a loved one. Another example of abnormal grieving is that of

having exaggerated reactions, such as uncontrollable crying or anger.

Many workers are prepared to deal with multiple situations related to patient care;

however, grief is a hard subject and at time home health workers are not sure what to do.

According to Weeber (2005) it is important of the worker to know and utilize the stages of

grieving. Not only to help themselves but also to help the grieving patient or family member.

Additionally, this article provides a great deal of information that is relevant to the advanced

practice nurse. It is important to remember that is normal for the patient, family, and provider to

grief. If the provider finds that the patient is grief is not normal the provider should be able to

share them some grief tips that may assist them with the coping with the loss.

Characteristics

The literature review identifies several characteristic and definitions of grieving and

sorrow. Ahlstrom (2005) states that sorrow is how the individual interprets loss. Additionally,

Ahlstrom (2005) state that is important to emphasize that sorrow is normal to a loss.

White and Ferszt (2009), states that grief should be classified as a potential health

problem. Additionally, White and Ferszt (2009) believe that validation of the clients’ grief

should be tailored to the individual grief response. The researchers going on to explain that

several strategy when dealing with individuals that are grieving, such as: acknowledging the loss

during the visit, practicing active listening, providing space for clients to tell their stories,

offering condolences, normalizing the grief response, and supporting the expression of painful

feelings associated with the loss(White & Ferszt, 2009).

Prigerson et al. (2009), states that grief becomes a serious health concern for a relative

few. For such individuals, intense grief persists, is distressing and disabling, and may meet

criteria as a distinct mental disorder. Clarke et al. (2005) defined grief as by feelings of loss with

intrusive thoughts about the loss, distress and pining. Wagner et al. (2006) defines grief a

depression and anxiety due to a traumatic loss.

Brunelli (2005) believes that grief is phenomenon that every human being will eventually

experience. Brunelli reports that the grieving process has the defining characteristic of being a

loss that causes grief. The loss is then processed to acceptance or resolution of this loss through

stages such as denial, anger, disorganization, reorganization, and depression.

Weeber (2005) defines grief as a psychological state characterize by mental anguish. It is

the response of emotional pain to loss. Weeber notes that grief can occur for reasons other than

the loss of a loved one. An example of a loss other than the loss of loved one is the loss of a

prized possession.

Definition

This writer developed a definition of grief based on the characteristics from the literature.

“Grief is a normal yet complex phenomenon, which is experience by individuals that have had a

significant loss.”

Instrument Critique and Application

This writer chose the Inventory of Complicated Grief (ICG) to measure the concept of

grief. The ICG-R is a modification of the Inventory of Complicated Grief (ICG) that includes all

the symptoms proposed by the consensus panel and additional symptoms enabling the testing of

alternative diagnostic algorithms. The ICG-R and the original ICG have both proven highly

reliable (Prigerson et al., 2009). The twelve of PG as delineated by the ICG: yearning; avoidance

of reminders of the deceased; disbelief or trouble accepting the death; a perception that life is

empty or meaningless without the deceased; bitterness or anger; emotional numbness or

detachment from others; feeling stunned, dazed or shocked; feeling part of oneself died along

with the deceased; difficulty trusting others; difficulty moving on with life; on edge or jumpy;

survivor guilt.

Reliability of the tool was established by means of reliability coefficient alpha. The

reliability coefficient alpha for the tool was 0.80 which indicates a very reliable instrument. The

symptoms were considered present if rated 4, 5 and absent if rated 1, 2, or 3 on its 5-point scale.

This writer will like to utilize the ICG-R instrument in future research study in grief of

patients with advanced illnesses. This instrument has been utilized in various studies and is

widely recognized for its validity.

Relevance to Advance Nursing Practice

Grief is an important concept for advanced nursing practice. This writer main focused

was that of grief in patients with Amyotrophic Lateral Sclerosis; however, there was minimal

data related to this topic. As a result this writer concentrated on grief and sorrow in general. The

advanced nurse practitioner can assess the degree of grief the patient is experiencing when

initiating a conversation with the patient that goes above the normal appointment. By promoting

communication the practitioner can recognize normal versus abnormal grieving. (NEED TO

FINISH)

References

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chronic illness. Journal of Clinical Nursing, 16(3a), 76-83. doi: 10.1111/j.1365-

2702.2006.01580.x

Brunelli, T. (2005). A concept analysis: The grieving process for nurses. Nursing Forum, 40(4),

123-128.

Clarke, D. M., Kissane, D. W., Trauer, T., & Smith, G. C. (2005). Demoralization, anhedonia

and grief in patients with severe physical illness. World Psychiatry, 4(2), 96-105.

Prigerson, H. G., Horowitz, M. J., Jacobs, S. C., Parkes, C. M., Asian, M., Goodkin, K., ...

Maciejewski, P. K. (2009). Prolonged grief disorder: Psychometric validation of criteria

proposed for DSM-V and ICD-11. PLOS Med, 6. doi: 10.1371/journal.pmed.1000121

Wagner, B., Knaevelsrud, C., & Maercker, A. (2006). Internet-based cognitive-behavioral

therapy for complicated grief: A randomized control trial. Death Studies, 429-453.

Weeber, S. C. (2005). Death, grief and the home health worker: A system approach. Home

Health Care Management & Practice, 17(5), 358-364. doi: 10.1177/1084822305275498

White, P., & Ferszt, G. (2009). Exploration of nurse practitioner practice with clients who are

grieving. American Academy of Nurse Practitioners, 21(4), 231-240. doi:

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