Decision-making about Assistive Technology Interventions in Children with Disabilities: Considerations for Service Providers Working with Families
What is the issue?
A significant number of children have 'complicated lives' because of complex developmental and functional challenges. When mobility, communication, feeding or other dimensions of daily function are significantly compromised for extended periods of time, interventions may be needed to compensate and adapt. This will allow for better function and participation in everyday life. In these circumstances management options often include 'augmented' or 'alternate' ways for function to be achieved, whether fully or partially. Assistive technologies include devices that are really tools, equipment, or services designed to compensate for, or enhance the function of, some physical, cognitive or environmental limitation(s). For example, a child with cerebral palsy may require supplemental tube feeding to maintain an adequate nutritional state, or a walking aid to enhance independent mobility or a 'touch talker' to aid in communication.
It may be extremely difficult for parents to make decisions about these kinds of interventions. Parents may experience decisional conflict, which refers to the uncertainty about which course of action to take when the choice among alternatives involves risk, loss, regret or challenge to personal life values.1 These dilemmas in turn pose challenges to health care providers who counsel and advise parents in these matters.
This Keeping Current offers several conceptual frameworks that we hope will be helpful to health care providers offering advice to families, and to families facing the difficult decision about whether to consider and to adopt an alternative or augmentative approach in order to enhance function.
Models of decision-making
It is important to consider how families make decisions and how we partner with them in this process. Several models of the decision-making relationship in the health care provider-patient encounter are helpful to consider.2 In the paternalistic model, the assumption is that the health care provider will make the best treatment decision. The patient is passive, agreeing to the health care provider's choice. There is minimal information exchange around options and patient preferences. In the informed model, the health care provider provides information on the various treatment options but the patient deliberates independently on the merits of the options and makes the choice on their own. Here, there is little exchange between health care provider and patient around the values and personal contexts that are important in decision-making. In the shared model, the health care provider and patient exchange information about treatment options and the family's personal values around those options. They then deliberate and decide together about which treatment to implement.
In reality, the decision-making relationship may not fit exactly into these categories and may be a mixture of them. Over time, the relationship around decision-making may also change. As time elapses, issues and values around treatment options may become clear for parents. While most clinicians may not explicitly ask patients and families how they would like to be engaged with decision-making, patients and families may differ on how they wish to participate. Understanding these models of decision-making can help us, as health care providers, to reflect on how we engage families in this complex process.3
When the decisions being considered are serious or have long term implications for health, when options have very different trade-offs between risks and benefits, and/or when there may be no clear 'best' treatment, it is especially important to develop a partnership with families in the decision-making process. This may be the case when dealing with some assistive technology interventions. It is in these circumstances that the shared model of decision-making may be most important.4
Sources of Decisional Conflict
Parents and families may struggle over decisions for a variety of reasons. Broadly, the decisional conflict might be due to: (1) a struggle between the values they place on competing treatment options, or (2) the process of decision-making is inadequate (such as a lack of adequate information sharing and support). (3) Of course, the context of the child and family that make their situation unique also affects their decision-making.5 Often the treatment options and their associated risks and/or benefits may not be in keeping with families' personal values and preferences, so the decision between the two options becomes an inherently difficult one. For example, some families may perceive the use of assistive technology, such as feeding tubes, as unnatural, and may challenge the way they see their child's life. Inadequate information-sharing may result in a lack of knowledge about options, the potential outcomes of options or unrealistic perceptions of the likelihood of outcomes. There may be a lack of support from some health care providers or family members (for example grandparents) during the decision-making process. At the other extreme there may be pressure from others (e.g. from family members, other caregivers, or from professionals within the school sector) to choose a particular option. The specific context of the family, such as the family makeup, education, financial resources, culture, and previous experiences with their child's health and/or health care system, or with disability, often also influences their decision-making.
A systematic review identified the decision support needs of parents attempting to make an informed health decision for their child.6 The review identified three key issues related to parental needs: (1) information, which concerned the content, delivery, source and timing; (2) talking to others; and (3) feeling a sense of control over the process.
Moving forward in decision-making with families: Process and conversations
General recommendations around communicating to parents and families in decision-making include understanding their experience and expectations; developing partnerships; providing the best unbiased evidence, including consideration of the uncertainties; presenting recommendations; and checking for understanding and agreement.7 For clinicians working with children with disabilities, it is important to think about both the process and content involved in the discussions and conversations with families about decision-making concerning assistive technology interventions.
Decision-making in the context of 'major' or 'serious' treatment decisions, such as those that concern augmentative interventions, often is an evolving process that needs to occurs over time. Information may need to be repeated and issues discussed on several occasions as parents digest information, do their own research, and deliberate over the decision. Information provided in print and/or web format is helpful for families to review the information independently. It is important to think of the development of a partnership with families as a key component in this process. Families should feel open to bringing forward their concerns and should not feel pressure from the health care team.
The information exchange needs to include not only the evidence base around the risks and benefits of the treatment but also the family's values and preferences around the treatment options. Being family-centred means understanding and being respectful of families' perspectives and wishes. It is important to discuss the everyday implications of the options and to understand how parents see the impact of the interventions on their child's daily life and their own. This provides opportunities to allay fears and to discuss strategies to adapt to a new way for their child to function. It can be very helpful to meet with and involve the extended family as part of the information sharing process. Family members might be helpful in asking questions that are relevant to the child and family's particular situation and in framing the options from other perspectives.
The International Classification of Functioning, Disability and Health (ICF) provides a powerful framework to help us think and guide our conversations with families about decision-making about augmentative therapies.8 The framework emphasizes thinking beyond disease and toward consideration of function, activity and participation in the context of the child and family's environment and personal context. This framework can help us when we discuss the augmentative intervention in terms of how it might help their child function and participate in their environment. For example, one might discuss the benefits of gastrostomy feeding in a child with cerebral palsy (CP) in terms of improving caloric intake and weight. However, one might use the ICF framework to discuss how gastrostomy feeding might reduce the struggle of feeding and long feeding times and increase the time the child spends in other enjoyable activities such as play. It is also important to talk to families about how they can still ensure that their child who is gastrostomy fed can participate in family meals.
It is extremely important to frame the issue of these interventions in 'positive' terms - making function possible (e.g. 'mobility', 'communication', 'nutritional management') as opposed to seeing these interventions solely as evidence of 'failure' (as families often do, at least initially). Often we focus on the issues with a biomedical lens, seeing how these interventions might impact the child. In discussing the trade-offs between the option of intervention vs. no intervention (i.e. continuing to do things the same way) it is important to talk about the daily reality of what this course of action means for the family as well as the child. Furthermore, it is important to talk of potential gains such as time and other resources to be used with the child and family. It is also useful to talk about what we have learned from other families in the same situation. Studies on decision-making have highlighted the fact that parents value the opportunity to meet with and understand the experiences of other families in a similar situation.
Future Work: Patient Decision Aids
Patient decision aids are tools that are meant to complement counseling, facilitate shared decision-making and improve decision quality. These can (1) provide facts about the condition, options, outcomes, and probabilities; (2) clarify a patient's evaluations of the outcomes that matter most to them; and (3) guide patients in the steps of deliberation and communication so that a choice can be made that matches their informed values.9 Patient decision aids can be delivered as self- or practitioner-administered tools in one-to-one or group sessions. The medium may vary and can include print, video, computer and/or the web. The evidence, largely derived from studies wherein adults are making decisions around interventions for their own health, has demonstrated their effectiveness. They improve patient knowledge, improve realistic perceptions of chances of benefits and harm, reduce decisional conflict, result in greater engagement of patients in decision making, and improve the agreement between patients' values and the option actually chosen.9 Few decision aids are available for use for child health interventions, and those that do exist address interventions such as immunizations or antibiotics for acute infections like otitis media. Decision aids that address the use of assistive technology in children are needed.
Decision-making about assistive technology interventions can be very difficult for parents. Health care providers should understand the key principles guiding this complex process and the practical strategies that are important for aiding families to make these decisions (Tables 1 and 2).
Want to know more? Please contact Sanjay Mahant, firstname.lastname@example.org