Grief & Loss: Discussion Paper. Item 1.

Grief & Loss: Discussion Paper. Item 1.
• Prescribed text(s)
Core Text:
Worden, W.W. (2009). Grief Counseling and Grief Therapy: A handbook for the Mental Health Practitioner. 4th Edition, Springer Publishing Co Inc.
Klass, Dennis, Phyllis R Silverman, and Steven L Nickman. (1996). Continuing Bonds. Washington, DC: Taylor & Francis.
• For social work students:
You will construct a paper around the following tasks:
1. Choose one role of a person in the profession for which you are studying. Please be specific and put a job description in an appendix.
2. Choose and outline one form of loss. Furthermore, discuss how might the role and process of responding to this loss be adapted for:
A. Children or adolescents (less than 17 years of age)
OR
B. Men
Be sure to take into consideration the context of your role, organisation and community.
Rationale
This assessment addresses the first three learning outcomes in the subject in particular. It asks for a logical, cognitive and analytical response. It helps to ensure that you have confidence in dealing with loss and grief in a variety of age-groups and circumstances:
– be able to demonstrate their understanding of normal human reaction when confronted with loss
– be able to demonstrate their understanding of useful counselling techniques and strategies for a variety of age groups and perceived losses
– be able to demonstrate their understanding of skills for working with people who have to make hard decisions in brief time scales usually in time of stress
WEL409 Assessment item 1 – details
Please read the following carefully

Submission
• Please submit your assessment item in a word document (or equivalent) UK English .
Preparation for social work students
• Ask yourself, what are the forms of losses we have been exploring?
o Reading 2 by Shapiro (1993) will be particularly useful for this
o Each topic in section 2 will also be useful of course but you may need to target your reading based on what you choose to do
• Choose a form of loss you find particularly interesting and want to reflect on further
• Target your reading of the topics based on your choices
• You can use your own professional role for addressing the task
• Remember to include a job description in the appendix
• Reflect on context – of your role and of your client group:
o What is the general nature of your role?
o What is the general scope and limitations to your role (what you can and cannot do)?
o In relation to grief and loss, what is the nature of your role?
o What are the particular dimensions to your client group you may need to take into consideration (location, age, life-stage, gender, sexual orientation)?
I had the following email question that may also be helpful for social work students:
Question: I was wondering if I could focus my grief and loss assignment on my current professional role

And

[Based on using current role] Could I use one loss as for example loss of feeling of safety, Loss of privacy (ie multiple services, family, etc being aware in the case of a teenager)…Loss of identity…dignity and so forth.

Answer: I love the idea of students using their own role as a basis for the assessment item. I think it provides an ideal opportunity to reflect your own context further, so go for it.

I like what you mention about loss – I would recommend referring back to Shapiro (1993) and the various categories used to describe loss as well. For example, symbolic loss and secondary loss might cover some of what you mention below. But yes, you are on the right track. I wouldn’t be surprised if people find they start with one major form of loss but end up indicating secondary losses as well. Of course that depends on what people decided to focus on but there is room to move.

Worden, W.W. (2009). Grieving special types of losses in Grief Counseling and Grief Therapy: A handbook for the Mental Health Practitioner (pp. 192-200), 4th Edition, Springer Publishing Co Inc.

Klass, D., Silverman, P. R., & Nickman, S. L. (1996). The Deceased Child in the Psychic and Social worlds of Bereaved Parents during the resolution of Grief In Continuing bonds: New understandings of grief (pp.199-216 ) Washington, DC: Taylor & Francis.
The link to the ebook of Continuing Bonds is in the Resources Folder
Klass, D., Silverman, P. R., & Nickman, S. L. (1996). The Wounded Family: Bereaved Parents and the Impact of Adult Child Loss In Continuing bonds: New understandings of grief (pp.217-230 ) Washington, DC: Taylor & Francis

Further reading
Lee, C. and Slade, P. (1996). Miscarriage as a traumatic event: A review of the literature and new implications for intervention. Journal of Psychosomatic Research. 40, 3, 235-44, Mar.
Knowles, S. (1994). A passage through grief–the Western Australian Rural Pregnancy Loss Team. BMJ, 309, 6970, 1705-8, Dec 24-31.
Jacob, S.R. and Scandrett-Hibdon, S. (1994). Mothers grieving the death of a child. Case reports of maternal grief. Nurse Practitioner. 19, 7, 60-5, Jul.
Lilford, R.J., Stratton, P., Godsil, S. and Prasad, A. (1994). A randomised trial of routine versus selective counseling in perinatal bereavement from congenital disease. British Journal of Obstetrics & Gynaecology. 101, 4, 291-6, Apr.
MacLean, M.A. Cumming, G.P. (1993). Providing for women following miscarriage. Scottish Medical Journal. 38, 1, 5-7, Feb.
Sexual and reproductive loss
Constance Shapiro dedicates fours chapters of her book to sexual and reproductive losses. Some of the reproductive losses have already been covered in the previous section on loss of a baby. In this section I will summarise Shapiro’s contribution and provide you with further references and articles. This field is expanding and therefore the most relevant and recent material will be found in journals and on the Web.
Sexual and reproductive losses are significant not only for the client but also for the client’s partner and have implications for the quality and continuance of their relationship, especially if sexual activity was one of its link-pins. C. Shapiro advocates informing and educating clients so that a complete understanding of their condition can be gained, dispelling myths and misconceptions, assisting couples to communicate with each other about their needs to enable sexual satisfaction and teaching them different methods to gain this. Family Planning and Women’s Health Centres are very good at working with people who have chronic illnesses, endometriosis, hysterectomy, impotence and physical disabilities and it is worthwhile using them to refer clients for this specialist information when the client(s) is ready.
People who have chronic illnesses are expected to take on life tasks to their maximum potential and not assume a ‘sick’ role. The are expected to try to normalise themselves and no longer be preoccupied with symptom control or staying alive. To do this new skills and strategies need to be learned. Chronic illnesses are not necessarily stable, they can lead to progressive deterioration. Therefore the client is undergoing a series of losses and expected to make multiple and progressively more difficult adaptive changes. For some people their sexual problems began before the official diagnosis of their illness. In this case they may attribute their reduced interest or performance as a failure of the self rather than as a symptom of their condition. Counsellors who have the whole interest of their clients at heart will raise issues of sexual functioning where there is evidence that it may be impaired as a result of the illness.
One of the symptoms of high stress and grief is a loss of libido and a reduction in sexual activity. Following crises and major losses this is a normal occurrence. Clients need to be informed. If one member of the couple desperately needs physical comfort which for them translates to sexual activity and the other, due to normal biological responses to stress or grief, cannot accommodate those needs a mis-interpretation of the interaction can develop. One may feel rejected, the other a failure and conflict may develop when the greatest need for the couple is warmth, peace and consolation from each other.
Counsellors often falsely assume that if the client does not mention a sexual problem there is none. The counsellor needs to probe and explore this sensitive area in order for the client to receive the appropriate information and be able to develop suitable adaptive strategies. By not mentioning sexuality issues the counsellor reinforces the client’s view that somehow sexuality is “off-limits” in discussion with the professional, even though it may be central to the overall ability of the client as an individual or as a member of a couple to normalise themselves.
C. Shapiro comments that even though a person may have been unwell for some time the diagnosis of a chronic illness comes as a shock. Until the diagnosis there is always hope for a cure or the diagnosis of a less serious complaint. There is little time for anticipatory grief and the client and their family can experience a crisis. During a crisis the individual and their family often are in a state of disequilibrium. Strategies for coping and managing are overwhelmed. People experience all manner of losses in confidence, support and relationship. Crisis allows families to be more receptive to input from professionals; it is a time of danger and opportunity. During this time the counsellor needs to be able to raise issues of loss including the loss of sexual functioning.
For many people admission to hospital is experienced as a depersonalising experience. Personal belongings are removed; the client is not in normal day clothes and may be required to wear a surgical gown. People are taken out of their normal roles and experience considerable anxiety about how things are running without them (the family, the office, are the teenagers fed and dressed…). There may be realistic concerns about the welfare of others e.g., children and frail elderly for whom the client has care responsibilities.
Separation from one’s sexual partner, combined with the lack of privacy in the hospital environment, requires that the patient abstain from sex or use masturbation as a sexual outlet. Individuals who are seriously ill will be concerned mainly with surviving and seeking relief from pain. But when a more stable recovery period ensues, seeking comfort from one’s partner through lovemaking is a natural recourse for many patients, who feel stifled by the lack of privacy and the unspoken message that patients ought not to feel sexual. The presence of a room mate further inhibits sexual expression, either with a partner or through masturbation. Gay and lesbian patients face a particularly trying time during their hospitalization. Not only may the hospital be reluctant to extend visiting privileges to their lovers, since they are not technically ‘next of kin’, but any display of affection and sexual expression may provoke disapproving glances from hospital staff. Thus, both heterosexual and homosexual individuals find that they must deny an integral part of their personalities by virtue of their patient status. (C. Shapiro 1993; 54)
The effects of certain conditions and their treatment will affect sexuality differently. Chronic illness or paraplegia may interfere with sexual function as a result of bodily changes and tissue damage. Some treatments like enterostomal surgery may create changes in body image that are considered incompatible with maintaining a sexual relationship. Medication or therapies may interfere with sexual function as may physical fatigue and pain. Anxiety about the illness, depression and grief may all be associated with diminished sex drive. (Shapiro,1993, p. 54)
Shapiro C (1993, p. 55-66) offers additional information adapted here on diabetes, endometriosis, hysterectomy, enterostomy and paraplegia. Her next reading (see Special Reserve) covers breast cancer, uterine cancer, ovarian cancer, prostate cancer, testicular cancer and AIDS.
Diabetes
Males with diabetes have a high incidence of impotence and recovery of sexual function is poor when erectile dysfunction has become severe. They have to deal with a gradual decrease in the volume of semen, diminished sperm count and sperm motility, androgen deficiency and abnormal spermatogenesis
For women there is a greater incidence of loss of libido and orgasmic dysfunction in diabetes. Some have difficulty with vaginal lubrication. Varying degrees of atrophy of the ovaries and uterus may occur in diabetic women. This is largely proportional to the duration of the disease. Diabetic women have a greater frequency of spontaneous abortion, stillbirths, malformed infants and high birth-weight babies. Pregnancies in diabetic women are seen to be high risk.
Genetic counsellors can advise couples of the risk of their baby developing diabetes. The risk for two people with diabetes of having a child with diabetes is 60%. If one of the couple is non-diabetic the children will most likely be carriers.
It is important to keep in mind that sexual dysfunction can also be the result of non-organic factors. The presence of morning erections is a positive sign that the male is physiologically capable of an erection. One episode of impotence can create such anxiety in a diabetic male that it, not the diabetes, interferes with his ability to maintain an erection. For the woman her sexual self-image maybe lowered due to the chronicity of diabetes.
The understanding of the role diabetes plays in sexual function and reproduction for the couple needs to be checked. If infertility has been diagnosed, are relationship difficulties resulting from that? Achieving intimacy and sexual fulfilment does not rest on orgasm or ejaculation. Couples can be encouraged to communicate openly about their needs and may like a referral to a sex counsellor, the Family Planning Association, Relationships Australia. Most Community Health Services have Child and Family Teams.
Endometriosis
This is a painful condition where tissue from the uterine lining is found in abnormal places for example, tubes, ovaries or peritoneal cavity. This endometrial tissue responds to menstrual cycle hormones, accumulating tissue, breaking down and bleeding each month. The tissue can develop into lesions, nodules and a variety of growths including tumours. There are numerous complications including internal bleeding, rupture of the growth and spreading of the tissue, formation of adhesions and interference with bladder function.
Women with endometriosis are often infertile and have persistent pain for which there is no cure other than hysterectomy and removal of the ovaries. The woman’s grief is not only over the children she will not have but over her difference from other women. Because of the fluctuating pain, the woman and her family live with uncertainty about her ability to participate in daily life and special events. The pain and exhaustion resulting from endometriosis can get in the way of a normal life for women who may successfully adopt children.
Hysterectomy
Hysterectomy usually has a more significant effect on younger women who have not had children than on older women. Reports on changes to libido after a hysterectomy are not conclusive and if anything suggests things may get better. For some women there is an immense sense of relief when the hysterectomy has ended long term pain and discomfort. Removal of the ovaries with hysterectomy is frequent. The woman needs to be clear about the use of hormone replacement therapy and the physiological changes that come with oestrogen reduction: changes to breast tissue, bones, skin and vaginal mucus membranes. These changes can affect her sexual self-image. Family Planning and Women’s Health Centres have the information and ability to work with women through these issues.

Enterostomy
Following bowel cancer part of the digestive tract may be removed and an opening or ‘stoma’ made in the abdominal wall for undigested material to be collected in a bag. A colostomy is when the colon opens through the stoma and an ileostomy is when the lower part of the small intestine or ileum opens through the stoma.

The change in body image is significant for the person with the enterostomy and their partner. Some women feel so strongly about the operation that they feel physically violated akin to rape and some men feel the operation is akin to castration. It is perceived to be a disfiguring injury.
Both men and women report interference in sexual activity from their colostomy – more than from ileostomy. The major problem appears to be that the couple fears damaging the bag, displacement, leakage noise or odour. Some people cover the bag with clothing during intercourse. Others empty it beforehand or restrict their food intake before having sex.
For some people the surgery comes on top of chronic pain and preoccupation with dietary intake. People who feel out of control and exhausted by the whole process of their illness including the surgery may be at risk of depression. They will need help in setting realistic restrictions on their activities instead of harsher restriction set by the depression. Where possible the grief counselling over the loss of body image and the concerns about sexual issues should be conducted as a couple.
Very little research has been done on same sex partners and their responses to enterostomy.
Paraplegia
Spinal chord injuries result in a myriad of losses: mobility, bladder control, bowel movement, resumption of roles held before the injury. Significant rehabilitation may be necessary in all areas of life before there is any consideration of the particular sexuality issues. The person who has paraplegia may give subtle clues about sexuality asking about whether anyone could find them attractive and this needs to be acknowledged and sensitively addressed.
A neurological examination will assist in the assessment of sexual potential. If the spinal lesion is high there is a greater likelihood that the male will be able to have an erection. Apart from the loss of feeling experienced, the low level of muscle strength, tone and incontinence may inhibit sexual activity. Pressure sores and muscle contractures may also be inhibiting.
Women may be able to have orgasm even when the nerves to the pelvic floor have been damaged; this is primarily through the effective use of fantasy as a major stimulant. There are specific techniques for assisting people to amplify physical stimulation.
Infertility in paraplegia is less frequent. There are problems with collection of semen and impregnation which can be overcome. The semen may not however be viable due to reduced temperature regulation in the male. In women with spinal chord injuries there is no alteration to the menstrual pattern or fertility. Pregnancy, labour and delivery have the potential to proceed without complication although some women will not be able to feel the labour pains to know that delivery is immanent. In some women a profound cardiovascular reaction called autonomic dysreflexia can result in hypertension, bradycardia and headaches.
The major issue in sexuality with these people is the loss they experience as a result of their changed roles in life. Paraplegia can result in depression, reducing the person’s energy for life and reducing their ability to accept the challenge of achieving meaningful sexual expression and gratification.
With all people who have been well, who then suffer loss or injury which changes their life, the counsellor needs to make an assessment of the pre-morbid interests and levels of functioning. Was this person’s libido high to start with? How important was sexuality for this person or couple before the surgery, or event? What are the attitudes of the significant people in this person’s life and what support is likely?

Read
Reading 9: Shapiro, C. (1993). Extract from When part of the self is lost: Helping clients heal after sexual and reproductive losses.
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Further reading
Veves, A., Webster, L., Chen, T.F., Payne, S. and Boulton, A.J. (1995). Aetiopathogenesis and management of impotence in diabetic males: Four years experience. A Combined Diabetic Medicine, 12, 1, 77-82, Jan.
Maldonado, R. (1995). Mastectomy and sexual identity: The reconstruction of self-image. Trends in Health Care, Law and Ethics, 10, 3, 45 52 Summer.
Kelly, M.P. (1994). Patients’ decision making in major surgery: The case of total colectomy. Journal of Advanced Nursing, 19, 6, 1168-77, Jun.
Serious Illness and chronic conditions
We have put this reading by Taylor and Aspinwall in this section so you have a broader appreciation of the role psychology and behavioural psychology sees for itself in the assistance and management of people with chronic conditions. It adds another layer to our understanding of the challenges confronting our clients, the extent and magnitude of their multiple losses. When we look at this reading and add to it issues about genetic inheritance of chronic conditions like this we can see that the burden on the client is huge. If then we imagine that our client has offspring who may have inherited the condition then our understanding of ‘burden of care’ becomes closer to the realities of these people’s lives.
Commentary for reflection and discussion
In reading Taylor and Aspinwall we are reminded of the many writers and therapists who work in the field of chronic illness, disability, loss and grief who work solidly to assist their clients in finding a meaning of their suffering and a meaning to their lives, to help them through the depression and pain of the full recognition of their losses. It is as if our notions sub-textually suggest that a life of pure hell and pain causes more growth, more depth and greater quality in the human. We wonder if that is true. Are there people whose lives are relatively speaking easy and whose lives have great worth and meaning? Is our search for meaning, our search for a life of value and quality in the face of great adversity just an ego defence mechanism? There is no harm, we would insist, in defending an ego from uncontrollable external forces like an unfortunate legacy of imperfect genes. And, that brings us back to Frankl whose life experience, observation and work indicate that humans as distinct from animals do not just accept their lot but search for meaning. When we find the meaning that fits for us we can deal more easily with our lousy odds, accept, adapt, be calm and enable our bodies and minds to make the most of their capacity to heal and to help us link with necessary social and emotional supporters and systems.
Being as contrary as possible here, we would now put it to you whether the good calm and placid patient or client is what we want or what we need. Are we, by proposing this model of humanity de-valuing the loud, noise, angry clients who may have come to discover that the meaning of their condition is to fight all of the so called helping and medical professions in order to get a better deal, results, cures etc. Life for them would be wasted if they did not use their status as a person who has suffered to change the world and reduce future suffering. The meaning of your life may lead you to Nirvana and the meaning of mine may lead me to Valhalla.

Read
Reading 10: Taylor, S.E. and Aspinwall, L.G. (1990). Psychosocial aspects of chronic illness.

Further reading
Gravelle, A.M. (1997). Caring for a child with a progressive illness during the complex chronic phase: parents’ experience of facing adversity. Journal of Advanced Nursing, 25, 4, 738-45, Apr.
Hainsworth, M.A., Eakes, G.G. and Burke, M.L. (1994). Coping with chronic sorrow. Issues in Mental Health Nursing, 15, 1, 59-66, Jan-Feb.
Almeida, C.M. (1995). Grief among parents of children with diabetes. Diabetes Educator. 21, 6, 530-2, Nov-Dec.
Lewis, S.L., Wesley, Y. and Haiken, H.J. (1996). Pediatric and family HIV. Psychosocial concerns across the continuum of disease. Nursing Clinics of North America. 31, 1, 221-30, Mar.
Cox, S. (1994). How I coped emotionally with diabetes in my family. Professional Care of Mother and Child, 4, 5, 139-41, Jun-Jul.
Eakes, G.G. (1993). Chronic sorrow: A response to living with cancer. Oncology Nursing Forum, 20, 9, 1327-34, Oct.
(See Abstracts in Resources.)

Unrecognised grief and unresolved grief
When a loss occurs it is easy to work with the obvious client on the primary loss. There are other hidden losses which may hinder resolution of the primary loss and there are other people whom we may ignore and not attend to as clients. The typical ignored grieving person in our society is the male. Males are socialised to be strong, show no emotion, do the hard work such as identify the body of someone who has died, negotiate with the authorities and support the family by getting back to work – usually resulting in less personal support. Fathers where a SIDS death occurs go back to work within a week usually. There may be some supportive comments by work-mates but for the most part, it is business as usual. There are even reports of company managers sending a staff message around on the email system alerting others to the loss and asking them not to mention it to the grieving male. This attempt at being sensitive and caring backfires. The man has no access to support or empathy from workmates and experiences considerable unreality. His world changed; he knows it did but there is no evidence of it in the place he spends most of his waking hours. When the feeling of being overwhelmed in a flood of grief occurs the father has to switch it off and ‘get on with the job’. They report overwhelming aloneness and sense of responsibility to keep working, to hold at least the finances together. Meanwhile the majority of mothers are at home usually with some support, or at least able to gain contact with family support and maternal child health personnel. Even if isolated they have the capacity to cry and feel sad when grief overwhelms them. Both parents can be truly isolated in their grief: she at home alone; he in the busy office, driving the truck, doing work.
In this section the readings therefore require you to examine the hidden losses, issues for men and new research on the grief experienced by children and twins especially. This is one of the areas of expansion in loss and grief work in this decade.

Read
Reading 11: Stevenson, R.G. (1990). Coping with unrecognized multiple grief.
Reading 12: Margo, J. (1996). Excerpts from Man maintenance: How the male body runs and what to do if it breaks down.
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Read Textbook
Worden, W.W. (2009). Abnormal Grief Reactions: Complicated Mourning in Grief Counseling and Grief Therapy: A handbook for the Mental Health Practitioner (pp. 127-152), 4th Edition, Springer Publishing Co Inc.
Klass, D., Silverman, P. R., & Nickman, S. L. (1996). Grief That Does not End In Continuing bonds: New understandings of grief (pp.45-57) Washington, DC: Taylor & Francis
Further reading
Bryan, E.M. (1995). The death of a twin. Palliative Medicine, 9, 3, 187-92, Jul.
We think you will find the Segal abstract very interesting as it contradicts the materno-centric view of loss and grief – posing the idea that it is the twin and particularly the monozygotic twin who will suffer greater intensity of grief following the death of the sibling.
Segal, N.L. and Bouchard, T.J Jr. (1993). Grief intensity following the loss of a twin and other relatives: Test of kinship genetic hypotheses. Human Biology, 65, 1, 87-105, Feb,
(See Abstracts in Resources.)
Termination of pregnancies
There are two factors affecting intensity and duration of grief. One already mentioned, is the closeness and significance of the relationship; the second is the sense people have of being responsible for the loss or death. It has been suggested that there is a direct relationship between the intensity of grief and the closeness of the relationship and between the responsibility for the loss and the duration of the grief. This model implies that people who are involved in causing a loss will suffer more than those who are innocent. As a model this is less helpful and clouds our understanding. If the relationship is very strong we will have times of remembrance and feel sadness to the end of our lives. Understanding that the death or loss of a person was unavoidable, or was a decision weighing up burden of care, pain and suffering to all involved seems to ease the burden of grief.
In termination of pregnancy as a result of foetal abnormality, a number of elements have been identified. First the commitment of genetic counsellors to non-directivity is reinforced as an appropriate principle (Marteau, 1994). This is difficult to do when time is very short between the diagnosis and when a decision needs to be made about terminating a pregnancy. For the parents and the staff of medical centres an unexpected diagnosis of abnormality can be experienced as a crisis. Crisis Intervention is directive. It is therefore up to counsellors to listen to the client, consider the circumstances and make an objective decision about whether this particular case constitutes a crisis. Directivity, in genetic counselling in this instance may be to ensure the clients have as much information as they can manage and are instructed to not make an instant decision.
The belief systems of the parents particularly the mother, are significant in determining the longer term outcome of the loss of a child following a termination for foetal abnormality. The Tentoni (1995) article outlines a creative approach to dealing with medium term needs of women following a termination of pregnancy. This strategy may not suit all clients, it does challenge us to use techniques, e.g. gestalt and psychodrama creatively and appropriately.
The Dallaire (1995) abstract identifies the importance of attending to those people who have an abnormal ultrasound result who have had no suspicion that there could be a problem with the foetus. People who have had counselling for genetic risk before the screening fare better. Dallaire concludes that all people with abnormal screening results need counselling and particular attention needs to be paid to the feelings of guilt which are greater in people where the abnormal screening result comes as a surprise. Lilford (1994) also encourages us to give feedback to the clinicians involved about their contributions to the clients’ progress and well-being. Spina bifida is a relevant example: usually at some point the parents ask ‘how did this happen?’ and the doctors honestly answer and include the research information about the role of folates in the diet of the woman before conception and during early stage pregnancy. It is easy to see how the mother can jump to the conclusion that she is to blame even if she was eating well and taking the appropriate supplements.
The process model outlined in the Stevenson (1990) reading can be well applied to termination counselling especially in its requirement to listen thoroughly in the first instance to the client’s expression of feeling and concern.

Read
Reading 13: Leming, M.R. and Dickinson, G.E. (1994). Disenfranchised grief.
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Read Textbook
Worden, W.W. (2009). Grieving special types of losses in Grief Counseling and Grief Therapy: A handbook for the Mental Health Practitioner (pp. 195-200), 4th Edition, Springer Publishing Co Inc.

Further reading
Marteau, T., Drake, H. and Bobrow, M. (1994). Counseling following diagnosis of a fetal abnormality: The differing approaches of obstetricians, clinical geneticists, and genetic nurses. Journal of Medical Genetics, 31, 11, 864-7, Nov.
Tentoni, S.C. (1995). A therapeutic approach to reduce postabortion grief in university women. Journal of American College Health, 44, 1, 35-7, Jul.
Dallaire, L., Lortie, G., Des Rochers, M., Clermont, R. and Vachon C. (1995). Parental reaction and adaptability to the prenatal diagnosis of fetal defect or genetic disease leading to pregnancy interruption. Prenatal Diagnosis, 15, 3, 249 59, Mar.
Lilford, R.J., Stratton, P., Godsil, S. and Prasad, A. (1994). A randomised trial of routine versus selective counseling in perinatal bereavement from congenital disease. British Journal of Obstetrics & Gynaecology, 101, 4, 291-6, Apr.
(See Abstracts in resources.)

Losses consequent to genetic screening
The Further reading by Kaback (1994) is the most relevant reading for this section and reinforces the material in the section of unrecognised loss and grief. The Morton (1996) article makes the point that bad news will not just occur once, there will be multiple painful events. Each piece of bad news needs to be communicated clearly, compassionately, and take cognisance of the issue of multiple losses.
Read Textbook
Worden, W.W. (2009). Grief Therapy: Resolving complicated mourning in Grief Counseling and Grief Therapy: A handbook for the Mental Health Practitioner (pp. 153-178), 4th Edition, Springer Publishing Co Inc.

Further reading
Lorenzen, T., Pociot, F., Hougaard, P. and Nerup, J. (1994). Long-term risk of IDDM in first-degree relatives of patients with IDDM. Diabetologia, 37, 3, 321 7, Mar.
Kaback, M.M. (1994). Perspectives in genetic screening. Principles and implications. International Journal of Technology Assessment in Health Care, 10, 4, 592-603, Fall.
Morton, R. (1996). Breaking bad news to patients with cancer. Source Professional Nurse, 11, 10, 669-71, Jul.
(See Abstracts in Resources.)
Clinical work in loss and grief
The reading contains clear direction and outlines of the main features of counselling in loss and grief. There is also sufficient information about the diagnosis of complicated grieving responses – some of these responses may be pathological long-term to the person grieving. We have still to examine the effect of deep grieving of parents on the live children in a family. Again we need to reflect on those whose grief is unrecognised, spouses, children and siblings.
The readings and abstracts cover working with families, different circumstances of loss including impairment to thought processes consequent to cancer or degenerative illnesses. There are two Further readings covering working strategies where the clients have learning disability.
Worden (1995) provided 10 principles for counsellors in cases of acute grief which are a helpful guideline:
1. Help the bereaved actualise the loss. Assist people to accept the reality so that they can deal with the emotional impact. In genetic counselling this requires education and interpretation of results and screening tests; explaining and explaining again and answering questions.
2. Help the bereaved identify and express feelings. Some feelings that are difficult are anger, guilt, anxiety and helplessness. Assisting people work through the pain is a major part of intervention and takes time.
3. Assist living without the deceased. Helping people come to terms with the loss and facilitating their ability to live independently. This includes enabling them to develop new skills and abilities.
4. Facilitate emotional relocation of the deceased. Helping the bereaved realise that although the deceased can never be replaced, it is alright to fill the void with a new relationship.
5. Provide time to grieve. Help the bereaved, family and friend understand that it takes time to accommodate to a loss and all its ramifications: that the process of letting go is a gradual one.
6. Interpret ‘normal’ grief behaviour. Bereaved people sometimes feel they are going crazy. Help to explain normal grief and place the person’s experience within that framework. It is rare that someone decompensates or becomes psychotic as a result of a loss. It can happen, so if you are concerned consult a psychiatrist or the mental health service.
7. Allow for individual differences. There is a wide range of responses and belief systems can play a part in how people react.
8. Provide continuing support. Consider connecting the person to a group.
9. Examine defences and coping styles. It is important for the counsellor to be mindful that some defences indicate competent life-affirming behaviours and others can be concerning e.g., using alcohol or other substances as a source of comport.
10. Identify pathology and refer. For some people, grief counselling is not sufficient and they need a referral to a specialist grief therapist, clinical psychologist or psychiatrist.
Reference: Worden, W.J. (1995) Grief counselling and grief therapy. 2nd edn London, Routledge.

Read
Reading 14: Shapiro, E. (1994). Helping bereaved families: Enhancing strategies for stable reorganization.
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Reading 15: Leick, N. and Davidsen-Nielsen, M. (1991). Risk groups and factors in deciding treatment.
Further reading
Krigger, K.W., McNeely, J.D. and Lippmann, S.B. (1997). Dying, death, and grief. Helping patients and their families through the process. Postgraduate Medicine, 101, 3, 263-70, Mar.
Phillips, B.M. (1996). Supporting relatives following a cot death. Postgraduate Medical Journal, 72, 853, 648-52, Nov.
Kuse-Isingschulte, M.W., Beutel, M., Hahlweg, B.C., Stauber, M. and Schneider, K. (1996) [Psychological coping with stillbirth. Course of grief response, influential factors, treatment satisfaction, patient management needs]. [German] Geburtshilfe und Frauenheilkunde, 56, 7, 380-9, Jul.
Marwit, S.J. (1996). Reliability of diagnosing complicated grief: a preliminary investigation. Journal of Consulting & Clinical Psychology, 64, 3, 563-8, Jun.
Read, S. (1996). Helping people with learning disabilities to grieve. British Journal of Nursing, 5, 2, 91-5, Jan 25-Feb 7.
Elliott, D. (1995). Helping people with learning disabilities to handle grief. Nursing Times, 91, 43, 26-9, Oct 25-31.
Deeken, A. (1995). [Death education as a way to improve the quality of life of cancer patients after a relapse]. Gan to Kagaku Ryoho [Japanese Journal of Cancer & Chemotherapy], 1, 22-5, Apr.
Kelly, M.P. (1994). Patients’ decision making in major surgery: The case of total colectomy. Journal of Advanced Nursing, 19, 6, 1168-77, Jun.
Langer, K.G. (1994). Depression and denial in psychotherapy of persons with disabilities. American Journal of Psychotherapy, 48, 2, 181-94, Spring.
Lilford, R.J., Stratton, P., Godsil, S. and Prasad, A. (1994). A randomised trial of routine versus selective counseling in perinatal bereavement from congenital disease. British Journal of Obstetrics & Gynaecology, 101, 4, 291-6, Apr.
Joffrion, L.P. and Douglas, D. (1994). Grief resolution: Facilitating self-transcendence in the bereaved. Journal of Psychosocial Nursing & Mental Health Services, 32, 3, 13-9, Mar.
Cibanal, L., Royo, R. and Ferri, R. (1994). [The newborn with spina bifida. Mourning for the imaginary child]. [French], Krankenpflege – Soins Infirmiers, 87, 1, 69-72, Jan.
Devan, G.S. (1993). Management of grief. Singapore Medical Journal, 34, 5, 445-8, Oct.
Persinger, M.A. (1993). Personality changes following brain injury as a grief response to the loss of sense of self: Phenomenological themes as indices of local lability and neurocognitive structuring as psychotherapy. Psychological Reports, 72, 3 Pt 2, 1059-68, Jun.
Hunt, M. and Meerabeau, L. (1993). Purging the emotions: The lack of emotional expression in subfertility and in the care of the dying. International Journal of Nursing Studies, 30, 2, 115-23, Apr.
Randall, L. (1993). Abnormal grief and eating disorders within a mother-son dyad. British Journal of Medical Psychology, 66, Pt 1, 89-96, Mar.
(See Abstracts in Resources.)

Clinical work in loss and grief
The reading contains clear direction and outlines of the main features of counselling in loss and grief. There is also sufficient information about the diagnosis of complicated grieving responses – some of these responses may be pathological long-term to the person grieving. We have still to examine the effect of deep grieving of parents on the live children in a family. Again we need to reflect on those whose grief is unrecognised, spouses, children and siblings.
The readings and abstracts cover working with families, different circumstances of loss including impairment to thought processes consequent to cancer or degenerative illnesses. There are two Further readings covering working strategies where the clients have learning disability.
Worden (1995) provided 10 principles for counsellors in cases of acute grief which are a helpful guideline:
1. Help the bereaved actualise the loss. Assist people to accept the reality so that they can deal with the emotional impact. In genetic counselling this requires education and interpretation of results and screening tests; explaining and explaining again and answering questions.
2. Help the bereaved identify and express feelings. Some feelings that are difficult are anger, guilt, anxiety and helplessness. Assisting people work through the pain is a major part of intervention and takes time.
3. Assist living without the deceased. Helping people come to terms with the loss and facilitating their ability to live independently. This includes enabling them to develop new skills and abilities.
4. Facilitate emotional relocation of the deceased. Helping the bereaved realise that although the deceased can never be replaced, it is alright to fill the void with a new relationship.
5. Provide time to grieve. Help the bereaved, family and friend understand that it takes time to accommodate to a loss and all its ramifications: that the process of letting go is a gradual one.
6. Interpret ‘normal’ grief behaviour. Bereaved people sometimes feel they are going crazy. Help to explain normal grief and place the person’s experience within that framework. It is rare that someone decompensates or becomes psychotic as a result of a loss. It can happen, so if you are concerned consult a psychiatrist or the mental health service.
7. Allow for individual differences. There is a wide range of responses and belief systems can play a part in how people react.
8. Provide continuing support. Consider connecting the person to a group.
9. Examine defences and coping styles. It is important for the counsellor to be mindful that some defences indicate competent life-affirming behaviours and others can be concerning e.g., using alcohol or other substances as a source of comport.
10. Identify pathology and refer. For some people, grief counselling is not sufficient and they need a referral to a specialist grief therapist, clinical psychologist or psychiatrist.
Reference: Worden, W.J. (1995) Grief counselling and grief therapy. 2nd edn London, Routledge.

Read
Reading 14: Shapiro, E. (1994). Helping bereaved families: Enhancing strategies for stable reorganization.
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Reading 15: Leick, N. and Davidsen-Nielsen, M. (1991). Risk groups and factors in deciding treatment.
Further reading
Krigger, K.W., McNeely, J.D. and Lippmann, S.B. (1997). Dying, death, and grief. Helping patients and their families through the process. Postgraduate Medicine, 101, 3, 263-70, Mar.
Phillips, B.M. (1996). Supporting relatives following a cot death. Postgraduate Medical Journal, 72, 853, 648-52, Nov.
Kuse-Isingschulte, M.W., Beutel, M., Hahlweg, B.C., Stauber, M. and Schneider, K. (1996) [Psychological coping with stillbirth. Course of grief response, influential factors, treatment satisfaction, patient management needs]. [German] Geburtshilfe und Frauenheilkunde, 56, 7, 380-9, Jul.
Marwit, S.J. (1996). Reliability of diagnosing complicated grief: a preliminary investigation. Journal of Consulting & Clinical Psychology, 64, 3, 563-8, Jun.
Read, S. (1996). Helping people with learning disabilities to grieve. British Journal of Nursing, 5, 2, 91-5, Jan 25-Feb 7.
Elliott, D. (1995). Helping people with learning disabilities to handle grief. Nursing Times, 91, 43, 26-9, Oct 25-31.
Deeken, A. (1995). [Death education as a way to improve the quality of life of cancer patients after a relapse]. Gan to Kagaku Ryoho [Japanese Journal of Cancer & Chemotherapy], 1, 22-5, Apr.
Kelly, M.P. (1994). Patients’ decision making in major surgery: The case of total colectomy. Journal of Advanced Nursing, 19, 6, 1168-77, Jun.
Langer, K.G. (1994). Depression and denial in psychotherapy of persons with disabilities. American Journal of Psychotherapy, 48, 2, 181-94, Spring.
Lilford, R.J., Stratton, P., Godsil, S. and Prasad, A. (1994). A randomised trial of routine versus selective counseling in perinatal bereavement from congenital disease. British Journal of Obstetrics & Gynaecology, 101, 4, 291-6, Apr.
Joffrion, L.P. and Douglas, D. (1994). Grief resolution: Facilitating self-transcendence in the bereaved. Journal of Psychosocial Nursing & Mental Health Services, 32, 3, 13-9, Mar.
Cibanal, L., Royo, R. and Ferri, R. (1994). [The newborn with spina bifida. Mourning for the imaginary child]. [French], Krankenpflege – Soins Infirmiers, 87, 1, 69-72, Jan.
Devan, G.S. (1993). Management of grief. Singapore Medical Journal, 34, 5, 445-8, Oct.
Persinger, M.A. (1993). Personality changes following brain injury as a grief response to the loss of sense of self: Phenomenological themes as indices of local lability and neurocognitive structuring as psychotherapy. Psychological Reports, 72, 3 Pt 2, 1059-68, Jun.
Hunt, M. and Meerabeau, L. (1993). Purging the emotions: The lack of emotional expression in subfertility and in the care of the dying. International Journal of Nursing Studies, 30, 2, 115-23, Apr.
Randall, L. (1993). Abnormal grief and eating disorders within a mother-son dyad. British Journal of Medical Psychology, 66, Pt 1, 89-96, Mar.
(See Abstracts in Resources.)
Theories and models of loss and grief
The major models related to loss and grief are stage or process models. Some of the models – for example Kubler-Ross – are more appropriate for use when there is an impending loss. This model may be useful in the lead-up with clients who are about to receive bad news in test results. In Kubler-Ross’s model there are five stages: denial, anger, bargaining, depression and acceptance. The model allows for someone to have time to move through these stages and come to a resolution or acceptance of their loss. One can compare this to people who do not wish to know that here is a genetic problem and who believe the diagnosis to be a mistake or that somehow they can beat the odds. The second stage, anger, occurs when they begin to acknowledge the truth of the matter, usually after a confirmed diagnosis, and become angry with anyone and about anything. The underscoring feeling is rage at being robbed or unfairly treated by life. Bargaining is about behaviours which may include prayers or promises to God to change if a miracle can occur, the pain can be reduced, life can be extended until… Any promises made are usually broken if a remission occurs. Depression comes with the questioning of what did the client do to deserve this – that you can’t win in this life, that there is no meaning and no hope. Acceptance is when the loss is incorporated into the person and positive steps are taken to say good-bye and tie up any unfinished personal or economic business.
Kubler-Ross herself says that there is more than one loss a person experiences when diagnosed, for instance with a terminal illness. There is not only the threat of loss of life but employment, sport, family, spouse, friends, hopes and dreams… therefore people may be in two or more stages or may appear to skip a stage. Some people never progress beyond denial or anger and die as they lived; true to themselves as an angry person.
In the readings you will be introduced to a variety of different models. Some are related to facing loss and dealing with it. Some are related to bereavement. In this case the loss has occurred – whether the client was prepared for it or not. In many cases in genetic counselling the loss has occurred:
• when a child has been born with a diagnosed genetic problem which results in the family needing to be screened and make decisions about whether to have further pregnancies;
• when a parent has been diagnosed as having Huntington’s Disease;
• when an ultrasound or maternal serum test results indicated significant health problems in the foetus.
In these cases models of the bereavement process may be more useful.
E. Shapiro’s contribution is an important one because it focuses on whole families and does not presume that loss and bereavement are experienced solely by the individuals who will attend counselling sessions – families are affected. To take this point further, Kessler and Bloch (1989) found the following when examining the social systems around people who are diagnosed with Huntington’s Disease:
in families where HD is diagnosed, individuals whose parents dealt with the diagnosis and disease progression with courage and dignity tended to perceive the personal threat of HD with less terror and panic than those whose parents were unable to cope and subjected them to abuse or molestation. The perception of the symptoms and the consequences of the chronic illness differ substantially;
families able to afford a full-time nurse or companion so that affected individual is kept at home differ markedly from those in which, due to lack of means and support, the affected person is either abandoned or placed out of the home. The comparison is so stark; it is almost as if one is dealing with two different diseases.
The economic and psychosocial factors of the whole family and social system surrounding the person with chronic, degenerative illness contribute significantly to the meaning of the biological aspects of the condition and the disease progress.
Finally Schechter and Zisook’s chapter gives us cause to reflect and be analytical about the relatively easy stage models of loss and bereavement. They remind us of cultural heterogeneity and that the models – those useful in a descriptive sense – in practice have not been validated by empirical research and may in reality have less validity than we would wish. This raises the perennial issue of whether it really matters if our models and ideas are invalid if, in the context of working with people the outcomes for clients appear to result in greater levels of happiness, calmness, ability to do necessary tasks, make hard and necessary decisions which are evidence of improved functional status. This comment begs the question is there more to life than our ability to ‘get on with the job’?
Mal and Di McKissock (1998) make this point in their recent publication Bereavement counselling: Guidelines for practitioners. Losses and grief are not some illness one ‘gets over’ and ‘gets on with life’. Thinking this is what spawns a series of treatments and counselling that encourages people to dwell on the loss and only ‘begin their life again’ once they come to some point of acceptance or ‘closure’. What Mal and Di are talking about recently is that we actually are in life through this whole process, this our life and the task of bereavement is about incorporating the loss into the whole scheme of who and what we are and how our life is drawn.
Some recent research in the UK suggests that people who keep busy and who don’t dwell on the loss have better long term outcomes. This can be seen to be true because they keep doing things that reinforce their abilities and competencies. Death is one of those things which is out of our control. We can let it undermine our sense of worth. If we still keep being and demonstrating worthwhile behaviours and generating positive outcomes (which we set for ourselves) we can claim back some agency and sense of control, reduce the stress and develop a whole life where the loss and the sorry is part of us, part of our experience, part of who we are and who we will become. This of course does not mean that we should revert to suppressing or denying our feelings. It does mean that we acknowledge and allow ourselves and others to feel, to express and to get active doing what they used to do. What we are therefore talking about is incorporating the loss into our experience of existence.

Read
Reading 5: Leming, M.R. and Dickinson, G.E. (1994). The dying process.
Reading 6: Raphael, B. (1990). The experience of bereavement separation and mourning.
Reading 7: Shapiro, E.R. (1994). A systemic developmental approach to family bereavement.
On the bottom right section of your ‘Dasboard’ you will find a section for doing library searches. Click on the tab that says ‘Special Reserve’ and then type WEL409 into the search bar to locate these readings.
Read Textbook
Worden, W.W. (2009). Understanding the Mourning Process in Grief Counseling and Grief Therapy: A handbook for the Mental Health Practitioner (pp. 37-56), 4th Edition, Springer Publishing Co Inc.
Worden, W.W. (2009). The Mourning Process: Mediators of Mourning in Grief Counseling and Grief Therapy: A handbook for the Mental Health Practitioner (pp. 57-82), 4th Edition, Springer Publishing Co Inc.
Klass, D., Silverman, P. R., & Nickman, S. L. (1996). Introduction: What’s the Problem? In Continuing bonds: New understandings of grief (pp. 3-23). Washington, DC: Taylor & Francis
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