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Article 5

Frequency and Importance of Grief Counselor Activities

Darlene Daneker

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Hospice care and grief counseling have become specialized areas of providing clinical services and have grown rapidly since Kubler-Ross’s book On Death and Dying (1969), yet little is known about the services individuals provide in the clinical aspects of hospice care. The care of the dying individual is managed by several types of professionals working under the broad heading of hospice care. This study focuses on individuals who provide direct clinical care to the terminally ill and their families.

The term hospice originated in medieval times when it was used to describe a place of shelter and rest for weary or sick travelers on long journeys (Hospice Foundation of America, 1998). In more modern times, hospices emerged to provide care to individuals who had a life expectancy of 6 months or less if their disease progressed as expected (Hospice Foundation of America, 1998). Hospice care is provided by a multidisciplinary team with the goal of controlling the client’s pain and helping the client deal with the emotional, social, and spiritual impact of the disease (Hospice Foundation of America, 1998). The first hospice in the United States was organized in 1974 in New Haven, Connecticut (Kitch, 1998), and the number grew to over 1,700 by 1995. There are three main types of hospice care: the home care unit, generally used by groups who are just beginning to provide hospice care; the hospital-based program, usually integrating palliative care units in the hospital and hospice workers at home; and the freestanding unit or full-service hospice in which the hospice staff oversee all aspects of terminal care (Kitch, 1998). Regardless of the type of hospice, all operate under the same four guidelines: (a) the client and the family are the primary unit of care, (b) care is provided by an interdisciplinary team, (c) pain and symptom control are paramount, and (d) bereavement follow-up is provided (Rhymes, 1990). The goal of hospice care is to make it possible for individuals to die at home, provide comfort and care when cure is no longer possible, and help dying persons and their families meet their spiritual, emotional, social, physical, and practical needs (National Hospice and Palliative Care Organization, 2002).

The purpose of this study was to examine what work behaviors individuals providing clinical services in hospice care perform, how often they do these things, and how important they feel these things are in performing their job. This information can help guide training for people seeking to work or volunteer in providing clinical services in Hospice.

Instrumentation

A survey was developed for this study.

Initial Item Generation

An initial list of work behaviors was drawn from the literature, including relevant items from the studies conducted by Loesch and Vacc (1993) and Nassar- McMillan and Borders (1999). This process resulted in a list of 132 work behavior statements.

Item Refinement

The initial list of items was reviewed by two focus groups consisting of four people in each group representing people who work with the terminally ill and the families of the terminally ill in the local community. Participants in the first focus group had training in counseling, nursing, social work, and the ministry. The second focus group consisted of individuals with training in nursing, counseling, and gerontology. The purpose of the focus groups was to eliminate duplicate items, clarify or reject confusing items, and add or delete any items necessary to best represent the work behaviors of individuals providing service in hospice settings. The refined list of work behaviors generated by the focus groups formed the initial practice analysis survey. At that point, the format of instrument was a 5-point Likert-type scale to measure frequency (1 = never to 5 = always) and importance (1 = no importance to 5 = crucial).

Participants

To provide a representation of the multi- disciplinary of clinical services in hospice settings, a random sample of 670 members of the Association for Death Education and Counseling (ADEC) who indicated their primary work setting to be clinical practice and who held a graduate degree at time of data collection were invited to participate. Of the 670 survey packets mailed out, 177 were returned for a response rate of 26%. Of the 177 returned survey packets, 42 were returned blank as requested in the instructions if the individual did not consider themselves a clinician; 135 (21%) were returned completed, and these respondents served as the sample for this study.

Participants were mainly women (N = 89, 79%), white (N = 110, 98%), and with an average of 12 years of experience and a range of 1 year (2.7%) to 35 years (1.8%). Twenty-six percent had MA degrees, 30% had MSW degrees, 14.3 % had MDiv degrees, 12.5 % had MS degrees, 8% had RNs, and 6.3% had PhDs. Participants were distributed among the fields of study with 26.8% studying social work, 24% counseling, 18.8% ministry, 16% psychology, and 14% nursing. Private practice was the most common work setting (29.5%), followed by hospice care centers (22.3%), hospitals (20.5%), and funeral homes (12.5%). Participants also were asked if they provided services to clients before the death individually or in a family setting, or if they provided services to clients after the death in an individual or family setting. Participants reported that they provided services to both individuals and families both before and after the death, indicating that service providers experience no disruption in the provision of service before or after a death of the terminally ill person.

The 15 work behaviors reported to be the most frequent are displayed in Table 1. Frequency of work behaviors had a wide range of means ranging from 1.09 to 4.64. The five work behaviors least frequently performed are reported in Table 2. The 15 work behaviors endorsed as being most important are reported in Table 3. The means for importance of work behaviors ranged from .77 to 4.79. The five work behaviors that were considered least important are reported in Table 4.

Many of the items endorsed as being very important were also items reported to be frequently performed. A comparison of means for each of the matched items was run, and results show a significant difference between the means of each of the items (p = .000). For example, give client permission to grieve was a work behavior that was very important and frequently performed. The means between the frequency and importance were significantly different, giving us greater confidence that respndents did not endorse the items the same way, and that they thought about their responses.

Table 1

Means and Standard Deviations for the 15 Most Frequently Performed Work Behaviors

Table 2

Means and Standard Deviations for the 5 Least Commonly Performed Work Behaviors

Discussion

Hospice provides a critical and welcome service to the terminally ill and their families. Individuals who provide clinical services to consumers of hospice services work closely with the families and with the terminally ill in a very personal way. This study demonstrated that these clinicians provide the work they believe is important frequently. The items assess for depression, provide individual counseling, and adapt intervention to individual client were all endorsed as very important but not reported to be frequently done. It may be important to provide the opportunity and/or training to include these aspects of service delivery. The items provide information on community resources and discuss changes in family roles were endorsed as being frequently performed but were not endorsed as important. This is interesting because the changes in family roles after a death would seem to be an important area to discuss. Training in hospice centers may want to include the importance of the family and the changes that occur to the family system during a terminal illness and death. Providing information on community resources is another activity that was not endorsed by this study as important. Training programs also may want to include the importance of being connected with community. It also may be helpful to examine how information about community resources is being provided to make sure it is easy to communicate, easy to understand, and accurate. For example, a short community handbook of information would be much easier way to provide information to consumers rather than having the clinician think of a short list on the spot.

Table 3

Means and Standard Deviations for the 15 Most Important Work Behaviors

This study examined the important and most frequently performed work behaviors performed by individuals providing clinical services for the terminally ill and their families. These clinical providers perform the work they believe to be most important most frequently, with a few exceptions. They provide clinical services to individuals and families both before and after the death. The work of the clinician in hospice settings is challenging and rewarding. Training in clinical work should include the aspects endorsed as important and frequently performed to assure that new clinicians are prepared for their work in hospice settings.

Table 4

Means and Standard Deviation of the Least Important Work Behaviors