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APPENDIX 5 - NPHAC REPORT ON THE FUTURE DIRECTION OF
COUNSELLING SERVICES FOR HUMAN PITUITARY HORMONE RECIPIENTS AND THEIR
FAMILIES (SEPTEMBER 1996)
TERMS OF REFERENCE
Counselling Services Sub-Committee
* Document examples of problems with existing services, including
case studies.
* Clearly define the nature of the counselling required by
human pituitary hormone recipients and their families.
* List the expectations of human pituitary hormone recipients
and their families regarding the delivery of counselling services.
* Propose options for the way in which counselling services
may best be provided to meet the needs and expectations of recipients
and their families. These options will have regard to privacy issues and
financial and administrative considerations associated with the provision
of Government funding for services and will include proposed policy on:
- mechanisms for resolving complaints;
- the duration and frequency of counselling;
- case management requirements;
- monitoring of access and usage including a defined minimum
data set; and
- quality control, including minimum professional qualifications.
REPORT OF THE COUNSELLING SERVICES SUBCOMMITTEE OF THE
NATIONAL PITUITARY HORMONES ADVISORY COUNCIL
Document examples of problems with existing services, including
case studies.
* Cost of services over the past two years appears to be in
the range of $300-$450 per contact. Part of the difficulty in determining
the exact costs is the inconsistent reporting of data. What constitutes
a "contact" varies from a brief phone call to an hours counselling
session.
* After a long delay a mechanism for subcontracting was developed,
but the arrangement required agreement with a highly invasive and controlling
legal contract that most (if not all) professionals would refuse to sign.
In one case a State Director sent the contract to a potential subcontractor
to review but indicated that she knew ..."that he wouldn't sign it."
In this particular case the State Director had agreed to a subcontracting
arrangement about six months ago, but at the time of this report, it had
yet to be implemented. In another case the potential subcontractor was
`shocked' by the contract, and only agreed to sign it because of the needs
of the recipient.
* Although most recipients were pleased with the services
provided, a significant percentage of consumers rated them as less than
satisfactory. Of the 87 people who indicated that they had used the counselling
services provided by Relationships Australia, 86.1% rated the services
as `satisfactory' to `excellent', whereas 13.8% rated the service as `poor'.
By contrast, in the same survey, of 240 respondents who had received information
or attended a CJD Support group 96.3% rated the experience as `satisfactory'
to `excellent' with 2.6% rating the group as `poor' (Pituitary Hormones
Section, 1996).
* Another survey (Pituitary Hormones Section, 1996) that received
17 responses from 66 letters to people who have used the Relationships
Australia counselling services indicated that 11 rated the services very
highly, 1 was neutral and 5 were negative.
* There has been confusion in consumer expectations about
the nature of appropriate counselling. This has raised concerns about
over-servicing for a minority of recipients. In 1995 the Counselling Services
Review Panel examined several cases where frequency, duration, and type
of treatment were evaluated to be outside the range of normal practise
(see later discussion under `Model of Responses to the Threat of CJD').
* Group sessions in one state are (according to the State
Director) oriented toward a strategy of `no change', that is the "....
recipients fears and anger were acknowledged and validated, but no change
was sought." Some recipients have found the group sessions to raise
their level of anxiety rather than alleviate it (Letter from State Support
Group Coordinator).
Clearly define the nature of the counselling required by
HPH recipients and their families.
List the expectations of HPH recipients and their families
regarding the delivery of counselling services.
Context
CJD has an uncertain incubation period, marked in years, with
exposure to infection carrying the threat of premature death. Most recipients
have been able to adapt to the risk of CJD. A minority of recipients use
counselling to provide relief from their fear and uncertainty about the
future.
Any future cost-effective counselling service would complement
the already well established hormone recipient community support and education
network. To promote stability and confidence within the recipient community,
established counselling arrangements could be maintained if they are found
to meet approved standards.
Assumptions
1. Knowledge of the possibility of contracting CJD, or that
one's child may be at risk of developing CJD is potentially a life
threatening traumatic event. "Traumatic event" is defined as
an occurrence that may trigger or cause significant psychopathology, e.g.,
a post traumatic stress disorder (PTSD), depression, or anxiety. The exact
effects produced by a diagnosis, or the threat of a diagnosis are difficult
to measure.
This type of traumatic event is obviously qualitatively different
from other occurrences in which the trauma is violent, or forceful and
often overwhelming, such as experienced by policeman and fireman, combat
veterans, or, more recently, survivors and witnesses of the Port Arthur
massacre. Although it is known that fearing early death or debilitation
may produce traumatic stress symptoms (Kelly and Raphael, 1993), most
research has focused on interventions following intrusive forceful events
"...outside the range of usual human experience" (DSM IV).
The second type of traumatic event experienced by the CJD
community is the actual death of a person who was found to have CJD. Issues
associated with grief and bereavement and survival guilt are common, and
may be long-lasting (Wortman & Silver, 1989). An additional concern
is that any verified or suspected CJD death impacts on the entire community
and, in fact, adds to the potency of the original knowledge and impact
of the traumatic event.
2. As well as social support, appropriate counselling can
mitigate and control the subsequent effects of the traumatic event. The
supporting research for this assumption is based on the general positive
effects of psychotherapy and counselling for any problem (Lipsey &
Wilson, 1993), and the helpfulness of some types of counselling in dealing
with traumatic events (see for example, Shapiro, 1995).
3. It is impossible to precisely predict how any individual
or family will react to the threat of developing CJD at a future time.
However, there are research findings that suggest a few significant variables
will affect the potential adjustment of the individual, which are discussed
below.
Model of Responses to the Threat of CJD 1.1 The following
model outlines how an individual might respond to the risk (or perceived
"threat") of developing CJD. The model describes behaviour,
and cognitive and emotional processes involved in healthy adaptation (e.g.
utilisation of support) and responses associated with emotional distress
(e.g. anxious preoccupation). The model begins at the point in time at
which the person becomes aware that she/he is at risk.
image
1.2 RESPONSES TO THE "THREAT" OF CJD
The preceding suggests three discrete types of consistent
responses, however, in reality fluctuations in adjustment phases may be
experienced depending upon available support, developmental stage and/or
presence of stressors. People may demonstrate many of the thoughts, feelings,
and behaviour associated with all three `types' at different times. Nonetheless,
most people either find some way to integrate the threat of CJD into their
life or end up in a state of chronic distress. As is true of adjustment
to any chronic threat, such as illness or the possibility of a serious
illness, the best predictor of successful adjustment is associated with
the development and utilisation of adequate support, whether it be from
family, friends, support groups, or counsellors (Taylor & Aspinwall,
1990).
Some people are more prone to intense emotional reactions
when faced with trauma or personal threat. Research indicates that trauma
is "necessary but not sufficient" to explain severe emotional
reactions (McFarlane, 1988). The traumatic event and factors intrinsic
to the individual (pre-disposing factors and how a person interprets the
"threat" of CJD) combine to determine how a person will respond.
The threat of CJD will probably interact with, and exacerbate, any pre-existing
psychological problems. Although, measuring the relative contribution
of premorbid factors is problematic.
A small minority may choose the route of `distancing', which
means they avoid information that may be upsetting, or that will make
them feel more at risk. For obvious reasons it is difficult to determine
how successful the denial strategy is, but it should not be dismissed
as a positive possibility.
Counselling can offer assistance at a number of points in
the process and may be used to remediate difficulties, such as anxiety,
depression, or a sense of hopelessness; or it may be helpful in developing
positive coping strategies and enhancing a personal sense of control and
self-esteem.
Types of Counselling Issues
Due to requirements of confidentiality it is impossible to
know exactly why some people have chosen to enter counselling and what
types of concerns that they have. Informal feedback from the Support Group
Coordinators, other people in the network, and HPH Counsellors (Zibell,
1996) has indicated the following counselling issues.
* Uncertainly about medical treatment received and what is
CJD
* Living with the threat of CJD
* Anger toward doctors or other medical people
* Anger about the loss of control and inadequacy of information
* Anxiety about other medical conditions
* Ongoing lifestyle issues, such as insurance or organ donation
problems
* Feelings of isolation
* Uncertainty or disagreement about what to tell children
* Family and Relationship problems resulting from the threat
of CJD
* Parental guilt about growth hormone programs
* Grief and bereavement
* Stress management and relaxation
Preferred Counselling Services
The following is a list of characteristics that recipients
and their families have indicated are important when seeking counselling.
The preferences were obtained from CJD Task Force surveys and feedback
from recipients and Support Group Coordinators.
* Some freedom to choose a counsellor
* Counsellor understands CJD and its implications
* Service is available for people in rural and remote areas
* Flexible hours for appointments
* Group counselling available
* Appointments are possible within seven days
* Telephone response within 24 hours of contact
* Ability to provide expanded services in an emergency; ie.,
episodic needs.
* Knowledge of community for possible referral services, e.g.
psychiatric consults
Length of Counselling
There is considerable research on the relationship between
the length of counselling and its effectiveness. In general, more psychotherapy
produces more gain as rated by the therapist and the client. However,
the initial impact of counselling is relatively strong and after about
6-8 sessions continued counselling improves functioning at a very slow
rate. (Howard, et.al., 1986). Other research suggests that with a focused
problem, brief therapy (less than 10 sessions) is as effective as long-term
therapy (Steenbarger, 1994). Finally, in fact most counselling is quite
brief. Extensive studies from the United States indicate that the average
length of counselling is no more than 4-6 sessions for all clients with
a variety of presenting problems (Pekarik, 1993). Interestingly, a brief
report by the Relationships Australia HPH counsellors indicate that 4-6
sessions would be an average figure for those seeking services (Zibell,
1996).
The research clearly supports brief, focused types of interventions
rather than long-term general approaches for most clients. Exceptions
include clients with significant psychopathology, individuals with serious
and chronic medical problems, people who have a difficult time forming
relationships, or (unfortunately) individuals who encounter incompetent
therapists.
Cost of Counselling Services
Two quotes from Western Australia indicate that the necessary
services can be provided at a cost from $80-$120 per hour. In other words,
the agencies would provide a pool of counsellors who would be provided
with the necessary training and the consumer would have some choice about
who he or she consulted. The government would be charged for the actual
services provided, with no fixed costs.
Propose options for the way in which counselling services
may best be provided to meet the needs and expectations of recipients
and their families. These options will have regard to privacy issues and
`financial and administrative considerations associated with the provision
of Government funding for services and will include proposed policy on:
- mechanisms for resolving complaints
- the duration and frequency of counselling
- case management requirements
- monitoring of access and usage including a defined minimum
data set
- quality control, including minimum professional requirements
RECOMMENDATIONS
* Establish a network of organisations and individuals that
are certified to provide appropriate counselling services to recipients
and their families.
* Develop a system that enables Counselling Providers to be
paid directly by the Health Department. However, this systems requires
that those who receive counselling services be identified by name.
* As much as possible, develop a process that requires the
counselling recipient to take responsibility for selecting an appropriate
Counselling Provider.
* Establish a Counselling Panel to oversee the certification
of Counselling Providers and the provision of counselling services.
I. Parameters of the Counselling Service
1. The counselling should be oriented toward a brief, problem-solving
model. However, the threat of CJD is a chronic condition and there may
be exacerbations or crisis periods where more support or intervention
is needed. The frequency of the counselling should be related to the objectives
that have been established by the counsellor and the client.
2. More than 15 sessions in a calendar year must be justified
and exceptions to the problem-solving model need to be justified. The
Counselling Panel should approve any provision of services outside the
listed parameters.
3. Phone counselling is appropriate for some people, but the
person must be willing to provide her/his name to the provider so that
fees may be paid by the Health Department.
4. Individuals or organisations considering group counselling
must have the group plan approved by the Counselling Panel. In the event
that a counselling provider wishes to refer a person to a group (e.g.
a stress management group) the experience must be approved by the Counselling
Panel.
II. Procedures for Certifying Counselling Providers
Recipients and their families will notify current Counselling
Providers that they need to apply for certification. The Health Department
will establish a system for providing information about the certification
process. Other organisations (such as Relationships Australia) or individuals
will be invited to apply for certification. Specific details will be determined
by the Counselling Panel.
Organisational certification will require that Counselling
Providers to be used by the organisation will meet the same standards
required for individual certification, which are outlined. Students or
trainees may not be used as Counselling Providers. The existing organisation,
Relationships Australia, will be granted an interim period of three months
from the date of certification to ensure that all counsellors providing
services to pituitary hormone recipients meet the standards required for
individual certification.
Requirements for Certification
Essential
a. Tertiary qualifications in Psychology*, Social Work or
Counselling. Eligibility for membership of relevant professional association.
*Current state registration for Psychologists.
(NOTE: Other counsellors with significant experience with
human pituitary hormone recipients and their families, will be considered
for certification by the Counselling Panel)
b. Evidence of an understanding of CJD or a commitment to
complete a training package.
c. Statement of accessibility and availability to provide
counselling services and an indication of normal and customary fees.
d. Evidence of ongoing consultation and supervision with colleagues.
e. Willingness to liaise with medical professionals, mental
health specialists and relevant others, and act in a case management capacity
if necessary (e.g. refer clients to suitable groups or specific mental
health programs).
f. Acceptance of a standard `Statement of Confidentiality'
that will apply to all clients.
Desirable
Experience in counselling recipients and their families or
previous work with chronic medical conditions is desirable.
III. Obtaining a Referral for Counselling Services
Prior to the implementation of this service all recipients
will receive a brochure outlining their rights and responsibilities and
the referral process.
1. Recipient or immediate family member calls a central 1800
number. This number will provide information and referral services, but
not phone counselling.
2. Callers are given a list of possible providers for their
area, or can propose a provider for certification.
3. Caller selects a Counselling Provider.
4. Counselling Provider calls the Health Department with the
client's name and the person is certified to receive services.
5. Recipient signs form (as in Medicare) to certify receipt
of services.
6. Counselling Provider is paid.
IV. Counselling Panel
1. Certifies providers.
2. Provides recommendations to the Department on exceptions
to length of counselling or the provision of services outside the normal
counselling parameters; advice concerning group proposals or the appointment
of an established provider who may fail to meet all essential criteria.
3. Acts as a resource for recipients and their families.
4. Disputes between recipients and Counselling Providers would
be handled by using the process normally available to a consumer, ie.,
the Counselling Provider's professional association or organisation employing
the individual provider. The Counselling Services Panel may provide advice
to recipients on how they might make their complaint.
5. Composition of Panel
Counselling Psychologist
Clinical Psychologist
Social Worker
Recipient Representative
Departmental Representative
The Recipient Representative and Departmental Representative
would not be involved in clinical discussions regarding an individual
recipient's counselling needs. Privacy of recipients will be safe-guarded
by restricted access to personal material, (available to professional
Counselling Panel members only) and standard confidentiality conventions.
References
* Blake, D., Abeug, F., Woodward, S., and Keane, T. (1993).
Treatment efficacy in postraumatic stress disorder. In T. Giles (Editor)
Handbook of Effective Psychotherapy. New York: Plenum Press.
* Diagnostic and Statistical Manual of Mental Disorders,
Fourth Edition. Washington, DC., American Psychiatric Association, 1994.
* Howard, K., Kopta, M., Krause, M., and Orlinsky, D. (1986).
The dose-effect relationship in psychotherapy. American Psychologist,
41(2), 159-164.
* Kelly, B., Raphael, B. (1993). AIDS: Coping with Ongoing
Terminal Illness. In J.P. Wilson and B. Raphael (Editors) International
Handbook of Traumatic Stress Syndromes. New York: Plenum Press.
* Lipsey, M. and Wilson, D. (1993). The efficacy of psychological,
educational, and behavioural treatment. American Psychologist, 48(12),
1181-1209.
* McFarlane, A. (1988). The longitudinal course of postraumatic
morbidity. The Journal of Nervous and Mental Disease, 176(1), 30-39.
* Pekarik, G., (1993). Beyond effectiveness: uses of consumer-oriented
criteria in defining treatment success. In T. Giles (Editor) Handbook
of Effective Psychotherapy. New York:Plenum Press.
* Shapiro, F. (1995). Eye Movement Desensitization and
Reprocessing. New York:The Guilford Press.
* Steenbarger, B. (1994). Duration and outcome in psychotherapy:
an integrative review. Professional Psychology: Research and Practice,
25(2), 111-119.
* Taylor, S. And Aspinwall, L. (1990). Psychosocial aspects
of chronic illness. In P. Costa (Editor.) Psychological Aspects of
Serious Illness. Washington, DC.:American Psychological Association.
* Wortman, C., and Silver, R. (1989). The myths of coping
with loss. Journal of Consulting and Clinical Psychology, 57(3),
349-357.
* Zibell, K., Personal Communication, 7 May, 1996.
COUNSELLING AND CJD
Report From Counselling Services Sub-Committee
Dr. Henry Andrews (Counselling Psychologist & Chair)
Ms. Janet Benson (Clinical Psychologist)
Mr. Angus Hopkins (Recipient Representative)
Ms. Suzanne Solvyns (Recipient Representative)
Ms. Cheryl Wilson (Departmental Representative)
August 1996
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