The CTKC will review and fund requests for applied research projects relating to the outlined themes. Projects should fall under at least one of the following four theme areas:
In Canada, there has been a growing focus on self-care over the last few decades, with a particular emphasis on the role of the individual client in health care.1 While self-care strategies can be used to promote health and prevent illness, there has been increasing attention on their use to manage chronic health conditions, which are the greatest single cause of death, disability, and illness in Canada.2,3,4 As the number of adults over age 60 is expected to rise substantially and the prevalence of chronic disease increases with age,5,6 research focused on maintaining health and managing chronic illness through self-care strategies has become increasingly critical to improve system efficiencies and to better support health clients.
Self-care refers to all clients do to promote health, prevent illness, and manage all aspects of living with a chronic health condition, including symptoms, treatment, physical and social consequences, and lifestyle changes.7,8 Health care providers can also support self-care by taking a client-centred, "collaborative approach to care that promotes [client] activation, education and empowerment".9 Self-care strategies and programs can empower clients to enhance their health, monitor their illnesses, and make the necessary cognitive, behavioural, and emotional changes to maintain a satisfactory quality of life.7 Clients take responsibility for treatment adherence10 and living well with illness and health events by questioning the direction of their health care, making choices about every aspect of the care they receive, and ensuring treatment suits their lifestyles and is in line with their goals and priorities.11,12,13
Those suffering from a chronic illness or recuperating from another health event, such as an injury, may employ a number of self-care strategies to cope with their condition. Some may have been suggested to clients by health care professionals on an informal basis, as part of their regular care, while others may simply be undertaken by clients without any direction from their care providers. These might include lifestyle modifications, treatment adherence and/or seeking support from social networks or support groups.14,15,16 Clients may also participate in more formal illness self-management programs that may be facilitated by either health care professionals or consumer-led groups. Self-management programs often focus on consumer empowerment and may teach specific self-care skills and behaviours, techniques to cope with symptoms, appropriate use of medication, nutrition, and/or communication and social skills. Clients may also be supported through the provision of disease-specific education and other resources to assist with self-care and navigating through the health care system.17,16,18
Past research has demonstrated that self-care practices can be effective in enabling clients to minimize pain, improve quality of life, enhance elements of health status, and reduce utilization of medical services.11,19,20,16,17,21 Self-care can also be a means of containing costs22 and increasing the sustainability of the health care system, as it can reduce hospitalizations, emergency department use, visits to medical doctors, and overall managed care costs.7,19,20,16,11
With an increasing prevalence of chronic illness in the population,2 which places a huge burden on the health care system,23 and a shift towards client self-care and health promotion, we feel it is vital to continue the development and evaluation of these practices, with a particular focus on the client experience of self-care and the partnership between clients and health care providers. This will provide a better understanding of client priorities and goals, reasons for treatment non-compliance or alteration, the nature of client/provider interactions, and ways to assist clients as they navigate through the health care system.
Proposals related to Client Self-Care Strategies and Programs may focus on one of the following areas and should include client input and perceptions wherever possible:
Technology is playing a growing role in the way in which health care partnerships are created and maintained. It is possible to enhance client and caregiver collaboration through the use of information communication technology, as it increases the availability of clinical information, encourages the use of decision support tools, and allows for communication and practice across distances. Computer technology can aid health care providers in meeting clients` expectations for services that are readily available, accessible, and seamlessly coordinated. In addition, it provides alternative ways for health information and services to be delivered directly to clients in their home, such as through the use of the internet25 or telephone-delivered interventions.26
Information communication technology can also be related directly to self-care, assisting home care clients to continue to live independently at home and increasing their confidence in their ability to self-manage their conditions. This may be accomplished through the provision of information, allowing them to more actively participate in care planning, and telehomecare strategies.27 For example, technologies/equipment in the home can allow client self-monitoring and transmission of health data (e.g. blood pressure, cardiorespiratory signals), which would provide progress indicators to health care professionals without the need for recurrent home visits or visits to the doctor`s office or hospital.28,29,30,27 Technology, such as home dialysis, can provide some clients with the ability to treat their illness at home, rather than requiring frequent clinic visits.12 Self-care may also be supported through the use of computer programs to assist with client preference assessment and "decision aids" that help clients think carefully about complex health issues, understand and clarify values, treatment and screening options, and likely outcomes.31,13
While it is important to understand the transformative impact of technology as a positive influence, it is also crucial to explore client perspectives on information communication technology, its desirability, and its congruence with their lives and understanding of their illness.32,33 It is essential to assess how technology modifies client expectations, client/care provider interactions, and the actions that each may take, as well as the actual effect the technology has on health and wellness.33 We should not just to assume that technology is beneficial and will be welcomed by clients and health care providers alike. For example, the use of technology assumes computer literacy, which may be a barrier to some users.27 Technology may also be perceived as having a negative impact on the client/provider relationship, as it may reduce the need for face-to-face communication, which may be an important part of their care to some clients.
Through the ACT Research Grants Program, we aim to promote an approach that incorporates consultation with clients and care providers during the design phase of new technology, as opposed to only following implementation. This will allow for an assessment of needs and interest, taking into account the fact that technology may be perceived as desirable by some groups (e.g. designers) and not others (e.g. clients).33 We encourage the investigation of initiatives that combine technology with other types of communication and include one-to-one interaction.
Proposals related to Information Communication Technology may focus on one of the following areas and should include client input and perceptions wherever possible:
Client-centred care involves the manner in which care is organized and delivered with a focus on client empowerment and respect for his/her autonomy, needs, concerns, values, and priorities. Ideally, at an individual level, clients are viewed as whole persons, not diagnoses, and are leaders in their healthcare. Clients decide if and who will participate in their care, defining the goals that shape the practices of the health care team. Evidence has shown that, at an individual level, client-centred care has been effective in increasing client satisfaction and improving the quality of care.34,35 There are many efforts to create and deliver client-centred care in partnership with health providers across Canada and internationally. One strong example of this commitment is the Registered Nurses` Association of Ontario`s Best Practice Guideline on Client Centred Care.34
In order to continue to improve care and impact clients in a positive way at the point of care, it is important to evolve individual organizational models of client-centred care to a system-wide, collaborative approach. Such a shift in focus would involve efforts across delivery sites, policy and professional designations. It would be a complex undertaking that would require significant input from clients, caregivers, health care providers, governments, and stakeholders to identify and investigate new models, procedures, and policies to ensure that an integrated team approach to health care is achieved. However, it is this type of approach, one that is open to an exploration of new ways to integrate, communicate, transition, partner and to create unique models that honour the experience of clients that may have the most potential to transform the client experience of health care. The Care to Know Centre is interested in projects that will advance efforts and provide effective strategies relating to evidence-informed policy, procedures, and practices that will promote the adoption of client-centered approaches across the health system. Projects must involve investigations of strategies and practices between two or more organizations, examining the interrelationship of key stakeholders, and should involve the client and/or their network of family and informal care givers.
Proposals related to System Approaches to Client-Centred Care may focus on one of the following areas and should include client input and perceptions wherever possible:
With an aging population and a growing number of clients being cared for in the community, informal caregivers are playing an increasingly vital role in caring for clients in their homes. Informal caregivers are most often “unpaid individual family members who aid in patients’ physical care and disease process coping”.36 They can be seen as providing three main types of social support to their loved one: informational, instrumental (such as driving patient to doctor’s appointments and preparing meals) and emotional.36 In terms of prevention and health promotion, the family is also important in encouraging healthy behaviors.36
Given the significant role caregivers play in the client’s care, it is important for health care providers to understand the concerns and needs of caregivers in order to provide as much support as possible, which is likely, in turn, to improve patient care. This can be accomplished through on-going collaboration and effective communication between formal and informal caregivers.
While caring for a family member can be a rewarding experience, caregivers often also experience many negative emotions such as burden, stress and worry.37 Caring for someone with a chronic disability has been shown to have significant effects on the caregiver’s health, particularly their psychological health.38Caregivers may struggle with role changes, feelings of losing control, a sense of inadequacy in providing care, guilt, denial, anger, fear and anxiety.37 Dealing with emotional or behavioural problems with the client has also been shown to consistently increase caregiver distress and/or burden.39
Research points to fact that interactions between caregivers and formal providers have often failed to properly prepare and support caregivers for their care provider role.40,41 Health care professionals may not fully recognize the complexity of work carried out by caregivers and may not acknowledge them as integral members of the care team. In some cases, health care providers may focus solely on the needs of their clients and may not see it as part of their job to attend to the needs of the patient’s informal caregivers.36,40 If caregivers' needs or concerns are overlooked, they will be ill-prepared to provide care for the client.
Research has indicated several key areas in which caregivers may need support from providers or other resources. Specific caregiver requirements will depend on individual characteristics and the unique caregiving situation, however there are some common needs that can be anticipated. For example, caregivers will likely have many learning requirements, such as a general need for health-related information so that they can provide adequate and appropriate support and care to the patient and be involved in decision-making.36 Some specific types of information that may be needed is information about the disease, delivery of home care, medications and side effects, depression, health promotion, community resources and financial resources.37,39,42 Caregivers also wish to be informed of the client’s condition. This type of information can reduce the caregiver’s distress and increase control and informed decision-making, thus making the caregiving experience more rewarding and the care they can provide more effective.39,42
In addition to learning needs, a systematic review of the literature demonstrated that caregivers have a need for opportunities to get out more themselves and for respite care.37 They also reported a need for assistance with running errands, shopping and cooking and a desire for more stimulation for their relative.37
Given the different forms of many diseases, the various treatment options, the changing nature of the information, as well as the unique characteristics of the caregiver, client and health team, more dynamic approaches to caregiver support are needed.
Proposals related to Caregiver Support Programs and Services may focus on one of the following areas and should include client and/or caregiver input and perceptions wherever possible:
For more information on the above themes, please click on Theme title.