Professional Documents
Culture Documents
Adherence to Intervention
In Alberta, children can receive treatment through agencies that contract to Family Services for
Children with Disabilities (FSCD). FSCD uses a family-centered approach to provide parents with
funding to access a range of supports and services that strengthen their ability to promote their childs
healthy growth and development (humanservices.alberta.ca, 2013). Within FSCDs Specialized Services
funding there has been a recent change in focus. Instead of developing and tracking goals for the child,
they now mandate that multidisciplinary teams develop and track goals for parents. This recent shift in
service provision has forced multidisciplinary teams become proficient in teaching parents strategies.
This change in service provision is supported in other geographical areas and is identified largely
as Family Centered Therapy. These services stress the importance of the family in service provision;
emphasize the family as decision makers regarding Early Intervention (EI) services; respect the culture,
beliefs, customs, and values of families; and encourage service provision in the natural environment
(Bradshaw, 2012). Parent involvement in their childs treatment is imperative. As Allan and Warzak
(2000) state, the success of an intervention is dependent not only upon its effectiveness but also upon
its precise delivery by a clinician and the consistency with which parents implement that treatment.
When parents are able to develop skills and strategies to work with their child, they develop increased
confidence and abilities that will carry forward after services have ceased. Because successful
treatment outcome.requires that a precisely delivered treatment is.delivered on a consistent
basis (Alland & Warzak, 2000) it is difficult to imagine a treatment program that does not involve
parents.
By large investigators often assume that recommendations are implemented as prescribed
(Allan & Warzak, 2000), however, parents are not adhering to recommendations as often as
professionals may think. Examples of non-adherence include, but are not limited to: not
implementing strategies at all or implementing strategies incorrectly, implementing strategies that
professionals recommend the parents cease, inappropriately transferring one strategy to other goals,
not implementing strategies consistently or implementing strategies that actually sabotage
achievement of the objective. Also, from personal experience, it can be difficult to catch nonadherence within the common consultation model.
So, why does parental non-adherence occur? And, how can we use ethical principles to guide
our decision making when we are seeing parental non-adherence to treatment strategies? First, it is
important to understand factors that contribute to non-adherence.
Barriers to adherence
Parents as vulnerable persons. As Tarleton and Porter (2012) state, unfortunately the whole
issue of working with parents with disabilities is still permeated with negative stereotypes and
assumptions. Research states that 30-50% of children whose mothers have a learning disability are at
risk of poorer developmentand are more likely to have developmental delays, lower IQ and
behavioural problems (bestbeginnings.org, 2013). Professionals need to be educated and experienced
when working with parents with disabilities in order to increase the likelihood of adherence to
recommendations. Professionals should consider that, parents with learning disabilities are among the
most vulnerable in society and have multiple difficulties, including struggling with literacy and abstract
concepts such as time and everyday practical tasksand the number of families headed by parents
with learning disabilities is increasing (Tarleton & Porter, 2012). Professionals need to be prepared to
recommend strategies to assist the parents in learning as well as the child.
Families with parents and children with disabilities are often involved with a plethora of service
providers, from pediatricians to Child and Family Services. Because, it has frequently been reported that
parents who have a learning disability are far more likely than others to have their children removed from
their care (Tarleton & Porter, 2012), and parents are scared to admit difficulties with their parenting and
to engage with services, as they fear their children will be removed (Tarleton & Porter, 2012), service
providers need to have a heightened awareness of how this fear may impact adherence.
Professionals often become frustrated with parental non-adherence and feel that parents just do
not understand. As explained by Allen and Warzak (2000), parents may have a number of conditions
that function as barriers to adherencethat are beyond the influence of the clinician, such as
cognitive impairment (i.e., the concepts of the intervention cannot be made simple enough to bring
parental understanding to a level sufficient to master the skills). So, professionals may have to
respect the limits of the parents in developing teaching skills under some circumstances.
Cultural factors. As Bradshaw (2012) identifies, culture often guides or influences the
activities, routines, beliefs, and expectations of families. In Canada, a multicultural society, the
population of children and families receiving EI services is increasingly diverse, making it likely that
service providers will work with families from cultures other than their own (Bradshaw, 2012). As such,
professionals are required to maintain cultural sensitivity, knowledge and experience to effectively work
with families of diverse cultures. It is likely that parental non-adherence may result from service providers
not recognizing the importance of, or feeling unsure about how to provide culturally responsive services
to families from cultures different from their own (Bradshaw, 2012). It is also likely that professionals
may cross boundaries unintentionally due to their lack of cultural understanding, which would contribute
to result in non-adherence.
Within Canadas multicultural society is it likely that professionals will increasingly encounter
parents as English Language Learners (ELL). This places increased strain on verbal and written
communication between the family and the professional which could be a contributing factor to nonadherence. Processionals need to encourage open, honest and clear communication including such options
as providing a translator.
Grieving and stress. After their child receives a diagnosis, many families got through a grieving
process that may look different for each family member. For parents of children with special needs,
feelings of stress are often compounded by a profound sense of grief that results from this loss of ones
initial hopes, dreams and expectations (abilitypath.org, 2013). Also, recent research has indicated that
parents of children with special needs may even experience feelings and symptoms of traumatic stress,
particularly at the time of their childs diagnosis (abilitypath.org, 2013). In addition to grief, families
experience on-going stress due to the challenging external realities of raising a child with special needs
(abilitypath.org, 2013). Parents juggle the daily needs of their family in addition to daily needs of their
child with a disability (e.g. medical appointments, therapy appointments, sibling stress, etc.). All of these
factors, and more, contribute to the overarching stress families with children with disabilities experience.
When considering non-adherence, professionals must have a heightened sensitivity and awareness of the
grieving process, on-going stressors and the familys ability to cope. Professionals should be respectful
when making treatment recommendations that will place additional expectations on the parents.
Multidisciplinary and Multi Modal teams. Parents of children with disabilities often access
services of multidisciplinary teams. Services of other modalities are also accessed (e.g. social workers,
pediatricians, councillors, parent support groups, etc.). As identified within the Resource Guide for
Psychologists: Ethical Supervision in Teaching, Research, Practice, and Administration (2010), Canadian
Code of Ethics for Psychologists (CCEP), 3rd ed. (2000) ethical standards have an often-confusing and
conflicting simultaneous impact on multiple parties client(s), supervisee/therapist, supervisor, and
organization. Because of the number of people involved conflicting recommendations are imminent (i.e.
too many cooks in the kitchen), which can be stressful for families and may impact their adherence.
Within a multidisciplinary team there is often consent for consultation within the team itself. It is
often necessary for parents to access many additional services as well. However, when consent is not
provided between multi-modal services, the parent is left to coordinate and relay information between all
players. This contributes to on-going daily stress for the family. Adherence to all professional
recommendations is impossible, contributing to non-adherence, in most cases involving multiple service
providers.
Parental and child behaviour change. Professionals in the area of behaviour modification
understand the processes and positive outcomes to behaviour change. However, parents may find it
difficult to change their behaviours as they have not seen positive outcomes first hand. As Allen and
Warzak (2000) have identified for many parents, their most frequent experiences with professionals
dispensing advice are likely to revolve around health care recommendations that produce rather quick
and marked improvements in health (e.g. antibiotic treatment of bacterial infections), which
reinforces parent adherence to treatment by providing quick solutions. In contrast, when immediate
or marked changes in behaviour are not experienced, the adherence behaviours are effectively placed
on extinction and in some cases may be punished (Allen & Warzak (2000). The reward (childs
behaviour change) for parental behaviour change will be more delayed than anticipated, which may
reduce parental adherence.
Also, when working to make parental and child behavioural change, there is often removal of
positive payoffs for undesirable behaviours. This can result in an extinction burst of noncompliant
behavior in their child (Allen & Warzak, 2000) and can be socially detrimental to the family (e.g.
stranger giving parents disapproving look). For parents this experience can be highly aversive, which will
likely reduce adherence.
Programming expectations/understanding of services. Service providers place distinct roles,
responsibilities and expectations on parents. Parents often seem unsure of aspects of service, such as
risks/benefits, risks of non-action, informed consent, roles of the multidisciplinary team, role of
administrators, reasons for assessment, community programming, school placement, etc. (CCEP, 2000).
During intake it is likely that parents do not receive sufficient information required to have a clear
understanding of the service provision before they begin. Occasionally the service provision is not the
best fit for the family. If a parents expectation of involvement is not congruent with the service
providers expectations, there will likely be a reduction in adherence.
Groups- Professionals (e.g. OT, SLP) and psychologists as broad groups will be affected.
Professionals involved in the government funding source will likely be involved, due to their expectation
of parental adherence to recommendations and potential loss of funding. Cultural groups could also be
affected by the professionals actions, depending on the familys communication and involvement in their
cultural community.
Step 2: Identification of ethically relevant issues and practices, including the interests,
rights, and any relevant characteristics of the individuals and groups involved and of the system or
circumstances in which the ethical problem arose. Using The Four Ethical Principles with their
Respective Values and Standards (CCEP, 2000), there are multiple ethical values that are key to the
dilemma of parental non-adherence. Ethical values and principles that could be under violation, in a broad
respect, will be identified.
(CCEP) Principle 1: Respect for the Dignity of Persons. Respect for the dignity of persons, in
the CCEP (2000) requires that psychologists acknowledge that all persons have a right to have their
innate worth as human beings appreciated and that this worth is not dependent upon their culture,
nationality, ethnicity, colour, race, religion, sex, gender, marital status, sexual orientation, physical or
mental abilities, age, socio-economic status, or any other preference or personal characteristic, condition,
or status. When parents are engaging in non-adherence it is important that professionals value parents as
people not as an object or a means to an end, (CCEP, 2000).
Under the value of General Rights, principles 1.1 and 1.3 direct psychologists to Demonstrate
appropriate respect for the knowledge, insight, experience, and areas of expertise of others and strive to
use language that conveys respect for the dignity of persons as much as possible in all written or oral
communication. Regardless of what may be impacting parental non-adherence (e.g. stress, learning
disabilities, cultural conflicts), professionals need to respect, value and integrate the knowledge, insight
and experience of parents into their treatment plans.
Under the value of Non-Discrimination, principle 1.9 specifically directs psychologists to not
practice, condone, facilitate, or collaborate with any form of unjust discrimination. This principle is
imperative to the development of a positive relationship with parents, which will contribute to adherence.
Although many professionals would never intentionally discriminate, there is always potential for
professionals actions to be seen as discriminatory by the family. Additionally, the value of Fair
Treatment/Due Process, principle 1.12 dictates that the psychologist should work and act in a spirit of fair
treatment to others. A psychologist needs to treat parents with dignity and respect just as they would
expect to be treated themselves.
Informed Consent is also an important aspect to consider when parents may be demonstrating
non-adherence. This value states that psychologists informed consent is the result of a process of
reaching an agreement to work collaboratively..(psychologists should) seek as full and active
participation from others in decisions that affect them (and)respect the expressed wishes of persons to
involve others in their decision making (CCEP, 2000). Psychologists are required to work collaboratively
with parents to explain all aspects of the treatment process within informed consent. This includes:
purpose and nature of the activity; mutual responsibilities; confidentiality protections and limitations;
likely benefits and risks; alternatives; the likely consequences of non-action; the option to refuse or
withdraw at any time, without prejudice; over what period of time the consent applies; and, how to rescind
consent if desired (CCEP, 2000). Psychologists must ensure that parents understand what they are
consenting to by providing as much information as reasonable or prudent persons would want to know
before making a decision or consenting to the activity as outlined in principle 1.23 (CCEP, 2000). If these
processes are not adhered to, and barriers to adherence are not considered (e.g. ELL) it would be
detrimental to the parent-professional relationship, and impact adherence.
Under the value of Privacy, principle l.38 states, take care not to infringe, in research, teaching,
or service activities, on the personally, developmentally, or culturally defined private space of individuals
or groups, unless clear permission is granted to do so (CCEP, 2000). Professionals must have a proficient
11
The Value of Competence/Self Knowledge directs psychologists to only carry out activities in
which they have established competence, consult with other professionals or refer clients when they feel a
clients problems are beyond their competence (CCEP, 2000). This presents many ethical dilemmas when
working within parental non-adherence. A psychologist may not even realize when they are demonstrating
incompetent with regards to barriers (e.g. culture). Even though they may consult elsewhere for advise,
they may be required to refer a client at some point.
Principle ll.10 (CCEP, 2000)states that psychologists should evaluate how their own experiences,
attitudes, culture, beliefs, values, social context, individual differences, specific training, and stresses
influence their interactions with others, and integrate this awareness into all efforts to benefit and not harm
others. As such, it is imperative for psychologists to consider how their own values, beliefs and stressors
may contribute to unethical behaviours. And, psychologists should promote services that will maximize
the benefit for each family, considering their cultural and belief systems, as identified in Principle ll.21
(CCEP, 2000).
In Principle 11.7 it directs psychologists to not delegate activities to persons not competent to
carry them out (CCEP, 2000). This poses a significant issue when working with parental non-adherence
due to LDs, or parents that are low cognitive. Psychologists must carefully choose strategies, to ensure
parents can be competent within those strategies. Also, if parents are ELL, experiencing stress or
misunderstand the programming expectations, parental competence will need to be assessed before
recommendations are made to prevent non-adherence.
The value of Risk/Benefit Analysis can assist in making an ethical decision when psychologists
are faced with parental non-adherence and struggling to determine an ethical course of action. Principles
ll.13 and 11.14 state that psychologists should assess all persons involved in treatment activities to ensure
they are able to discern what will benefit and not harm the persons involved and when assessing, be
sufficiently sensitive and knowledgeable about individual, group, community and cultural differences and
vulnerabilities (CCEP, 2000). As such, psychologists should take time to ensure what they are
recommending as treatment is of clear benefit to all parties involved, is sensitive to cultural factors and
References
Bradshaw, W (2012). A Framework for Providing Culturally Responsive Early Intervention Services.
Young Exceptional Children, 2013 16: 3 originally published online 25 July 2012
DOI: 10.1177/1096250612451757
Canadian Psychological Association. (2000). Canadian Code of Ethics for Psychologists, 3rd ed.).
Ottawa: Author.
Canadian Psychological Association. (2001). Companion Model to the Canadian Code of Ethics 3rd ed.
(2001). Ottawa, ON: Author
Canadian Psychological Association. (2001). Guidelines for Non-Discriminatory Practice. In Canadian
Psychological Association, (2001). Companion Manual to the Canadian Code of Ethics for
Psychologists, 3rd edition. Ottawa, ON. Author.
Family Services for Children with Disabilities
Retrieved from: http://humanservices.alberta.ca/disability-services/14855.html
Feminist Code of Ethics (1999), Feminist Therapy Institute, Inc.
Retrieved From: http://www.chrysaliscounseling.org/Feminist_Therapy.html
Reinsberg, K. (2013, August 8) States of Grief for Parents of Children with Special Needs, Abilitypath.org
Retrieved from: http://www.abilitypath.org/areas-of-development/delays--special-needs/statesof-grief.html
Resource Guide for Psychologists: Ethical Supervision in Teaching, Research, Practice, and
Administration (2010) Canadian Psychological Association. (2000). Canadian Code of Ethics
for Psychologists, 3rd ed.). Ottawa: Author.
Tarleton, B. & Porter, S. (2012). Crossing no mans land: a specialist support service for parents with
learning disabilities. Child and Family Social Work, 17, 233-243.
doi:10.1111/j.1365-2206.2012.00833.x