ONCOLOGY SOCIAL WORK

Chapter 19Handbook of Health Social Work, 2nd Edition

Provide an introduction of cancer epidemiology, treatment, and the psychosocial, behavioral, and spiritual impact of the disease on individuals and families.

Describe the history, conceptual foundations, and functions of oncology social work in general, and the field of psychosocial oncology.

Describe the contributions of social work to oncology research.

CHAPTER OBJECTIVES

Define the scope of practice knowledge, skills, and interventions that oncology social workers use to assess and ameliorate psychosocial and quality of life concerns.

Address emerging issues in psychosocial oncology including cancer survivorship, family decision-making, genetic testing, and end-of-life care.

Present selected resources available for patient education and support, and professional development.

CHAPTER OBJECTIVES CONT.

Average American life span, 44% of men and 38% of women will develop some form of cancer.

Cancer is an umbrella term for hundreds of diseases characterized by uncontrollable growth of abnormal cells in the body.

EPIDEMIOLOGY

Breast, Uterine, Colon and Rectum, and Melanoma are the top leading cancers for women.

Prostate, Colon and Rectum, Urinary bladder, Melanoma and Non-Hodgkin Lymphoma are the top leading cancers for men.

CANCER BY MEN AND WOMEN

Carcinoma is used to describe all cancers especially the malignancies that originate in the epithelial linings of organs.

Sarcomas affect bones, cartilage, muscle or connective tissue.

Adenomas begins in the adrenal, pituitary, and hormonal glands.

TYPES OF CANCER

Lymphomas are cancers of the lymphatic system and affect the organs affiliated with the immune system.

Leukemias are blood cancers that arise in the bone marrow where stem cells mature and travel through the bloodstream.

TYPES OF CANCER CONT.

Health disparities are not full understand but they likely reflect complex interactions.

Such as: Biological, Social, and Behavioral factors.

Includes: Genetic differences, exposure to environmental toxins, and lack of access to good nutrition, preventive screening, and health insurance (Link & Phelan, 1995; Williams, 1997).

HEALTH DISPARITIES

Oncologists base treatments on type and invasiveness of the disease, or its stage in development.

Treatment may include some combination of surgery, chemotherapy, and radiation.

CANCER TREATMENT

An estimated 53-68% of all adults in the U.S. have reported using prayer or spiritual practices, naturopathic supplements, breathing and relaxation exercises, yoga, and chiropractic to enhance their health (Richardson, et. al., 2000; Tilden, Drach, & Tolle, 2004).

SPIRITUAL PRACTICES

Public and Private funding for cancer research and training began to increase once treatments became more common.

Federal government established National Cancer Institute in 1937.

American Society of Clinical Oncology to increase public education about cancer prevention.

FUNDING

Today social workers provide comprehensive psychosocial assessment, case management, and supportive individual, family, and group interventions that help patients and their families navigate medical systems, make use of community resources, and attain optimal adjustment to the disease and treatment (Hermann & Carter, 1994).

SOCIAL WORK CONTRIBUTION

Newly diagnosed patients experience a range of emotions including fear, shock, uncertainty, and grief.

Many struggle to mobilize coping skills needed to manage these emotions.

Psychosocial stressors can undermine an individual’s sense of self and self-worth, provoke fears and anxieties, and test coping mechanisms, values, and social support systems.

PSYCHOSOCIAL IMPACT

Individuals with cancer have higher rates of mental illness than their peers.

Adjustment disorders, anxiety, depression, and fatigue are the top disorders.

Depression is often under-diagnosed or viewed by healthcare professionals as a “natural” response to life-threatening disease (Spiegel, 1996).

MENTAL ILLNESS

• Disrupts family and social roles• Causes emotional upheaval • Hard to maintain normal family functioning • Family caregivers provide the bulk of care

for patients particularly if young, elderly, or has advanced cancer

CANCER AND THE FAMILY

Communication Flexibility Mutuality Cohesion Family life state Illness variables Patients level of functioning

Requires families to talk about things that they have little or no experience in talking about.

FAMILY ADAPTATION AND DYNAMICS

Interpret and experience illness and treatment differently.Children with cancer often experience increase anxiety,

depression, social isolation and regression.Can impede normal developmental tasks, identity

development and building intimate friendships.Can interfere with exploration of sexual identities; an

estimated half of adolescent survivors of cancer feel uncomfortable with the opposite sex and avoid dating (Zebrack & Chesler, 2001).

CHILDREN AND ADOLESCENCE

•Older adults account for 77% of new cases.•Older patients are more likely to die than those younger than 65 years. • Frailty is a condition defined by muscle weakness, limited mobility, and fatigue. •Older patients share many physical, psychological, social, and spiritual concerns that shape their aging and illness experiences, quality of life, and palliative care needs.

LATER LIFE

Fixed incomes and inadequate insurance benefits can limit an older cancer patient’s access to the resources needed for coping with treatment.Common challenges include paying for treatment not covered by Medicare, transportation to appointments, and needing assistance in performing daily self care. Older patients are frequently excluded from clinical trials based solely on age.Physicians may refrain from aggressive treatments under the assumption that older patients cannot handle adverse effects.

LATER LIFE CONT.

Outliving a life threatening condition requires managing long term effects that can cause emotional distress, functional limitations, and further chronic health problems. Chronic conditions and side effects act as ongoing reminders of the negative emotional experiences associated with cancer. Childhood survivors frequently worry about recurrence and may need support from parents and peer groups. Learning disabilities can develop and may impede academic progress, cause loss of self esteem, depression, anxiety, and family problems. As survivors become adults they become vulnerable to long term treatment side effects and early mortality.

SURVIVORSHIP

Oncology social work provide psychosocial support that maximizes the health & functioning of individuals, families, groups, & communities affected by cancer.

Social workers draw on the profession’s person-in-environment perspective to treat “the whole person” in the context of social & environmental factors that can enhance or exacerbate the illness experience.

SOCIAL WORK ROLE

Social workers intervene at multiple levels and across systems to enhance patient care & quality of life. Oncology social workers use a variety of interventions, & provide a range of services from clinical case management to intensive psychotherapy to meet the unique needs of cancer patients & their families at different points on the cancer continuum. Traditionally, they primarily practice in inpatient & ambulatory hospital settings, but the sub-specialty has grown to a range of inpatient, outpatient settings, home health &hospice services, community based cancer support programs, private practice and community based mental health settings.

SCOPE AND FUNCTIONS

Effective resource for cancer patients, caregivers, and other family members to find answers to illness-related questions & ameliorate psychosocial concerns.

Helped to reduce social isolation and build social supports, facilitate the sharing of emotional concerns, provide safe places to exchange strategies for managing symptoms, interacting with family members and healthcare providers.

Groups can help to keep children and adolescents on track developmentally, support overburdened and exhausted parents, and provide continuity during chaotic or uncertain transitions.

SUPPORT GROUPS

Oncology social workers emphasize the family as a unit of care

Family-centered care engages family members as allies in providing quality treatment, treats families with dignity & respect, and helps patients and families make more informed and consensual care decisions.

Social workers help families to adapt to illness-related changes in family roles & responsibilities, provide emotional support & resources to reduce the burdens of family caregiving, assist with financial & other logistical concerts, & empower families to stay informed about a patient’s status.

FAMILY

Oncology social workers act as a bridge between patients & the healthcare system, advocate for patients & families, & help keep the oncology team informed about the unique concerns, strengths, cultural beliefs, & care preferences that affect the patient’s experience with cancer.

They also contribute to the advancement of cancer prevention & quality care by developing social services and programs that responsive to the needs of cancer patients and survivors.

Promote public education about early cancer screening and treatment options.

INTERDISCIPLINARY TEAM

Practice is grounded in a variety of theoretical frameworks & empirical literatures, including psychosocial oncology, attachment & loss, stress & coping models, family systems, & relational coping, child & adult development, narrative & meaning-making.

For the oncology social worker, “the ecosystems perspective is a way of seeing care phenomena (the personal & the environment) that are interconnected & multilayered to order & comprehend complexity & avoid oversimplification” (Meyer, 1995, p.18).

CONCEPTUAL FOUNDATIONS

Social workers in oncology must be well informed about common types of cancer, symptoms, treatment protocols, medical procedures, short & long-term side effects, illness trajectories, and survivorship.

New research suggest that social workers can help with cancer prevention by tailoring individual, behaviorally oriented interventions to target harmful behaviors among groups.

MEDICAL AND PSYCHOSOCIAL KNOWLEDGE

Linking patients with essential programs and resources requires up-to-date knowledge of ever changing policies and services, including eligibility requirements, application procedures, and strategies for communication information to cancer patients and their caregivers.

Oncology social workers must be familiar with health insurance, managed care, Medicare, and Medicaid.

HEALTHCARE AND SOCIAL SERVICES

Early assessments help identify and resolve problematic coping and health behaviors.

Comprehensive assessments can predict morbidity and mortality in older patients with cancer.

Assessments should be ongoing as cancer progresses, remits, or recurs.

ONGOING ASSESSMENT

Ability to practice with people from a variety of cultural, ethic, racial, socioeconomic, and religious backgrounds is a requisite skill for oncology social workers.

Effective pain & symptom management is impossible without understanding individual, family, and cultural perceptions, values, and beliefs about pain, and developing interventions that respect the unique, individualized experiences of chronically ill patients and their families.

Social workers have professional mandate to intervene on multiple levels, ensure the provision of just and equitable care to all patients, etc.

CULTURAL COMPETENCE AND ADVOCACY

Oncology social workers play a key role in educating patients and their families about cancer and its anticipated disease trajectory, treatment, common psychosocial responses, community resources, and symptom management.

Oncology social workers empower patients and families to be more engaged in their care, by helping them ask to questions and make informed decisions about all aspects of medical treatment.

PATIENT EDUCATION

Although cancer mortality has decreased, oncology social workers should be skilled and comfortable in working with chronically ill and dying patients.

Oncology social workers service as consultants, mediators, and advocates on transdisciplinary teams addressing complex ethical dimensions of medical decision making, family communication, and care preferences.

In case of terminal cancer, social workers may provide end-of-life care to patients and family members by facilitating discussion of the patient’s end-of-life wises and supporting the selection of a healthcare proxy.

PALLIATIVE AND END-OF-LIFE

Despite all that is known, the healthcare system has not adequately addressed the psychosocial concerns of cancer patients, cancer survivors, and their families.

A report by the Institute of Medicine (2007) suggests that many of healthcare providers do not address these concerns or consider psychosocial support to be an integral part of quality oncology care.

CHALLENGES