Value and Principle Based Policy
Developing policy is a value-laden process which requires both empirical evidence and an ethical or principle-based framework to guide policy development. – An ethical framework facilitates a move from approaches based on cost reduction, towards those that also recognize and value caregiving as a worthwhile activity. Such a move positions caregiving as a social or collective responsibility rather than a purely individual or familial one. Employing principle-based frameworks and transparency of values can serve to reveal the realities of caregiving as well as the potential cost of ignoring the limitations of existing policies and programs.
The Caregiver Policy Lens (CGPL) is guided by values and principles derived from more than 250 discussions with the caregivers, caregiver organizations, service providers, program planners and policy makers across Canada who participated in this project. Values and principles of sustaining resilient caregivers were also reviewed from pertinent literature. These values, principles, and key concepts that frame the CGPL are described below and have been “translated” into the set of questions that make up the CGPL.
Values and Principle Underpinning the CGPL
I. Process Factors
A socially inclusive society is one in which all people are recognized as equal and given free voice. No one person is given more value or respect than another. Social inclusion ensures a focus on the needs of every individual and ensures the right conditions and support are in place for each person to achieve their full potential. For caregivers, this means recognizing and valuing them as equally important as those they care for, while realizing that no two caregivers are alike.
Inclusion and diversity go hand in hand. Inclusion requires acknowledging and valuing a range of cultures, genders, ethnicities, sexual orientations, disabilities, capacities, interests, values, beliefs and opinions. To provide inclusive policies, programs and services to caregivers, basic knowledge of your caregiving population and those they are caring for is essential. Otherwise, social exclusion results in economic, social, political and cultural disadvantage. Those who are included have access to valued goods and services in society while those who are excluded do not.
Engaging caregivers and caregiver organizations in the process of developing, implementing, and evaluating policies and programs has the potential to make a positive difference in achieving desired outcomes. Collaborative and participatory approaches permit those affected by new public policy directions the opportunity to be involved in the process that produces inputs, such as research information, used to inform policy. Those engaged in the policy process from the outset inevitably also contribute to creating the policy. Caregivers’ experiential knowledge and reflection of the values and beliefs of their peers contribute to making sound policy.
For caregivers, service provision communication is not just about disseminating information; through communication, we offer the presence of caring, comfort, support, and respect. Good communication has the following components:
- It facilitates comprehensive knowledge transfer, without information or emotional overload
- Uses strategies for active, critical, and empathic listening
- It takes into account diversity: cultural, socio-economic, ability, and literacy
- It breaks down barriers between agencies, services providers, and government and/or organizational departments
- Respects privacy and confidentiality requirements while taking into account the need for information
- Does not assume that the caregiver and care recipient are one entity
- Recognizes the importance of relationships between the caregiver and service providers in building trust and confidence in care/services.
- Creates a voice/space for the caregiver in the care team – involves caregivers in goals of care planning for the care recipient
Policies, programs and services designed for caregivers need to have these components of good communication; ideally they will also contain tools and resources for caregivers to improve their own communication with care recipients.
In developing policies and programs, being inclusive means asking: Are caregivers and caregiver organizations participants in developing the policies and programs that affect them?
- Are caregivers included in developing care plans, discharge plans, etc. for the care recipient?
- Are caregivers consulted about any significant changes in service provision including discharges of the senior from community or hospital prior to their occurrence?
We live in a society where competition for funding has created growing divisions between professions, agencies and groups representing similar causes. This fragmentation has created ‘silos’ of information and a lack of communication between professions, policy, services, research and practice. Developing policy, programs and services for caregivers requires that non-medical supports are given equal emphasis as medical needs. For caregivers, the needs for support regarding non-medical activities of daily living are as important as a biomedical focus. Unfortunately, caregivers’ needs are all too often ‘lumped in’ with the care recipients’ health concerns. This means that support (or lack of support) for caregivers usually remains in the domain of health services and organizations. Additionally, services, programs and policies can unintentionally affect caregivers’ rights and services in other areas (e.g., time off work can result in decreased pension benefits at retirement).
Sustainable caregiving requires the development of solutions that are broader than any one department, agency or organization. Inter- and intra-jurisdictional communication, networking and capacity building is the only viable way to develop caregiver policies and programs. Through these relationships, those interested in developing supports for caregivers bring their unique challenges and unique approaches to similar issues. The goal is to break down individual ‘silos’ and share expertise on the best way to support caregivers; this connectivity will also ensure that unintended negative impacts on caregivers are minimized or eliminated. For example, where a municipality or health region is designing policies and programs in rural communities (e.g., caregiver support group), are service groups involved that may be able to provide volunteers and transportation?
Policies, programs and services must be designed to encourage open and innovative forms of communication between and among organizations. This is particularly relevant for government departments or organizations that have traditionally organized their work and focus as ‘silos’ from other departments and organizations. Good communication is a cornerstone in developing and delivering programs and services that sustain caregiving. Caregivers should not, as is often the case, need to tell their stories repeatedly or to constantly orient new service providers. Clear lines of communication and responsibility between caregivers and service providers, and between agencies, is crucial. Policies, programs and services need mechanisms to ensure input and feedback from caregivers, without adding to their responsibilities. Caregivers need to know the processes in place to resolve any concerns about care. Caregivers may feel that complaints about care or services will place the care receiver (or themselves) at risk of retaliation, necessitating support to do so.
When developing policies and programs, ask: Are all stakeholders (e.g., different levels of government, health and non-health organizations, voluntary and business sectors) pertinent to the development, implementation and support of the policy or program involved and collaborating effectively with each other and with caregivers?
- Are the roles and responsibilities of each agency and worker providing services to the care recipient made clear to the caregiver?
- Are mechanisms in place so that caregivers and workers can exchange information/update each other on changes in the care recipients’ needs and care (with appropriate consents)?
- Is adequate communication between agencies and workers in place such that the caregiver does not have to repeat information over and over?
- Are staff knowledgeable about, and able to refer caregivers to programs for which they are eligible outside of their own agency?
Policies and programs must be informed by the best available evidence found in the peer reviewed literature and the experiential knowledge of those receiving services and those delivering them. The Service Provider Resource Guide: A Toolkit for Supporting Caregivers of Older Adult includes a review of caregiver assessment tools, proven caregiver interventions programs and other pertinent resources to inform policies and programs.
Monitoring and evaluation are the processes of collecting and analyzing information about a program, policy or service that tells you whether you are ‘on track’ in reaching your objectives, and whether or not the program, policy or service achieved what you wanted it to. You cannot know this without monitoring a policy, program or service during its implementation as well as evaluating its impact at specific points. It is necessary to plan for monitoring and evaluation when you design your program, policy or service; this will help you design and maintain an effective policy, program or service. For policies, programs or services that have either a direct or indirect effect on caregivers, mechanisms should be in place to ensure inclusion of caregiver perspectives and experiences. By gathering and reviewing this information, you will be able to evaluate effectiveness and impact for caregivers, and develop a better program and service that responds to the specific needs and circumstances of caregivers as they change over time.
- What mechanisms are in place to obtain input and feedback from caregivers in program development, service delivery and evaluation of outcomes?
- How are diverse caregivers engaged and supported to provide input and feedback?
II. Assessing Policies and Programs
Family caregivers must be acknowledged, respected and valued for their caregiving work (Canadian Caregiver Coalition). They have the right (but not the obligation) to be active partners both in decisions about service provision and as providers of services to the care recipient. Respect is conveyed through language used to refer to caregivers and caregiving which should portray caregivers positively. This is important as policies and programs create an image of those at whom the policy is directed, filtering down into programs and practices, shaping the social environment. Respect is conveyed when privacy and confidentiality requirements are met. Respect is conveyed when caregivers’ input and feedback on policies, programs and services is solicited and considered. Ensuring that policies and programs recognize the importance of the relationship between the caregiver and the care recipient, and facilitating this relationship, denotes respect.
- Do policies reflect recognition of the importance of the relationship between the care recipient and caregiver (e.g., visiting policies in institutions, no “first available bed” polices, “allowable” care in care facilities)?
- Do policies take into account that caregivers may have other roles and responsibilities outside of their caregiving role (e.g. spouse, mother, employee, friend, etc.)?
- Are protocols in place between agencies and workers so that caregivers do not have to repeat information over and over?
Caregivers are a diverse group, with diverse needs, desires and abilities. Understanding the diversity of caregivers so that they are not marginalized means being aware of how ethnicity, cultural diversity, faith, income, mental health, and sexual orientation influence a person’s experience as a caregiver. Diversity can become marginalization when these differences are not recognized, or worse, discriminated again. Caregivers’ needs and appropriate solutions vary depending on their ethnicity, income, physical and mental health, culture, and gender – and where the care receiver is in their illness journey and/or type of illness. Many caregivers are marginalized for more than one reason. When developing policies, programs and services, necessary concepts in diversity and marginalization include:
- Ethno-cultural – particularly for recent immigrants, First Nations, Métis, and Inuit communities, and Canadian Africans.
- Gender – including gender analysis given that women, as the majority of caregivers, often experience considerable challenges managing caregiving with work and other responsibilities.
- Poverty – economic marginalization can be both a cause and consequence of caregiving. People living on low incomes may face a double burden of marginalization.
- Mental health – of both the caregiver, and the care receiver.
- Addiction issues – of both the caregiver, and the care receiver.
- Challenging behaviours – emotional and behavioral symptoms of an illness, particularly dementia, can cause extreme hardship for caregivers.
- Sexual orientation – GBLT caregivers may face unique issues from other caregivers, due to their sexual orientation.
- Aging/ill health/disability – as the majority of caregivers age, this is an increasingly pressing issue.
Caregivers can be socially and economically marginalized due to their provision of care, including blame or stigma associated with some illnesses. Polices, programs and future research must be responsive to the changing context of caregiving in Canada and the increasing diversity in our society at large.
- Are eligibility criteria, application processes and other relevant information presented clearly and simply (including in languages and cultures specific to the communities served)?
- Is eligibility criteria and other relevant information available in a variety of mediums (e.g., print, audio, telephone, web) designed to reach caregivers who are isolated or live in rural and remote areas?
- Are staff available to “interpret” policies and programs and assist with applications when needed (e.g., for caregivers with barriers related to language, literacy, or are feeling overwhelmed)?
“Family caregivers have a choice to become partners in care and have the right to choose the degree of their involvement at every point on the continuum of care” (Canadian Caregiver Coalition). Willingness or capacity to take on the role of caregiver cannot be assumed. This necessitates that service providers explore this issue at the time of the initial assessment and review on an ongoing basis. In order for there to be genuine choice, information must be provided about what to expect in terms of the care recipients’ care needs and what support can be expected from the health and service system (including information about eligibility, wait lists, etc.), and what can be expected if crises occur or if a decision is made to limit or end caregiving at some point.
- Are caregivers provided with clear information required to make informed choices (e.g., about care the care recipient requires, potential changes, likely duration, and the system support they can expect, including during crises)?
- Is the caregiver informed about and offered services available to the care recipient proactively and prior to crises?
- Is the caregiver’s willingness to provide care, the boundaries of their care, and the care recipient’s needs reviewed on a regular basis, and at critical transition points during the care (e.g., hospital admission or discharge, access home care, moving to long-term care, etc.)?
- Is there a plan in place if the caregiver chooses to limit or end part or their entire caregiving role?
- Are other options to provide care explored with the care recipient and caregiver (e.g., help mobilizing their support networks to provide more care, access additional community services, move to long-term care, etc.)
Supporting caregivers requires that policies, programs and services are both accessible and responsive to the needs of diverse caregivers. How a program or service is organized, promoted, and delivered has important effects on caregivers. To access services caregivers require education, and information about system requirements and pathways (e.g., wait lists, service elements, eligibility criteria, how to request and use time with healthcare professionals and service providers, identify their needs, and access services), delivered in ways that are appropriate to their needs, circumstances (e.g., vision, literacy, language) and culture.
- Are staff available to “interpret” policies and programs and assist with applications when needed (e.g., for caregivers with barriers related to language, literacy or are feeling overwhelmed)?
- Are any practical barriers addressed (e.g., cost, transportation)?
“Family caregivers have the right to express their needs and receive support” (Canadian Caregiver Coalition).Caregivers have the right to have their own needs assessed, not just in relation to those of the seniors for whom they are providing care. This is to ensure that the risks to their own health and well being that caregiving presents, are as much as possible, ameliorated so that they do not become “second victims”.
Promoting and Supporting Resiliency
Resiliency is the capacity of a caregiver to cope with stress and adversity. Resiliency is a process, not an inherent trait of an individual. Resilience is the result of individuals interacting with their environments and the processes that either promote well-being or protect them against the overwhelming influence of risk factors. An environment that promotes resiliency includes inclusive services, communities, and social policies.
In the development of policies or provision of services for caregivers, a focus on resiliency requires that we identify the individual, family and community factors that support caregivers’ resiliency and those that place it at risk. Service providers need to be proactive and non-judgmental in asking caregivers about their self-care, the challenges they are experiencing, and what might help. To do this service providers require not only the time and skills to gather information but sufficient knowledge of their communities to link caregivers to appropriate program and resources (e.g., health promotion, recreation, transportation, income supports, etc.)
At the organizational/program level, consider the following:
- Are caregivers explicitly asked about their own needs and how they might be best addressed?
- Are caregivers asked to identify changes needed to the support and services they need/use?
- Relationship to the care recipient/family dynamics; social support available (e.g., family, friends, community services;
- Competing responsibilities to other family members/friends; work responsibilities (e.g., impact of taking time off work);
- Personal needs for self-care (recreation, learning, exercise, etc.);
- Geographic distance from the care recipient;
- Personal health and functioning;
- Financial costs (e.g. supplementing seniors’ income, travel, supplies, and assistive devices for the care recipient);
- Emotional and mental health issues/needs;
- Knowledge about care management;
- Risk factors impacting health and well being (e.g., age, health conditions, isolation, etc.)
Sustaining the caregiver role is about having access to the necessary system supports during the caregiving journey. For caregiving to be sustainable, caregivers need a combination of personal support networks and community-based supports that help create and sustain resiliency. There are two main components to system sustainability: appropriate staffing and education, and appropriate focus of policies, programs and services. In short, it means the right programs at the right time.
Even well-developed policies and programs for care recipients may have unintended negative impacts on the caregiver. For example, many day programs for care recipients do not include transportation, and require caregivers to juggle competing priorities and time constraints. If a program or policy has unintended negative impacts for the caregiver, this translates to negative impacts for the care recipient as well.
Sustainability in developing or evaluating policies, programs and services means asking “What are the tools caregivers need to support their caregiving endeavors?” Necessary tools include:
- Education and information about the services available to themselves and the care recipient
- Training (how to provide appropriate care)
- Services (for both caregivers and care recipients)
Caregivers need to feel that they can trust service providers which necessitates sufficient time and sanction to develop relationships. Continuity of care can be facilitated by keeping the number of different staff to a minimum, perhaps offering services as teams or pods so that shifts and absences can be accommodated while ensuring least disturbance to caregivers and care recipients.
- Personal relationship building (the development and provision of care, support, trust and encouragement, both within and outside the family).
- Emotional/psychological support (including time to themselves, self-care knowledge and practice).
- Practical support (connection to resources, information about the caregiving journey – especially challenges and transitions).
- Respite (understood as an ‘outcome’ and not just a service? ), offered proactively on a regular basis and in form preferred, and also made available when the caregiver expresses the need for it.
- Healthy aging (supportive community, services supporting non-medical activities of daily living, periodic reassessments during caregiver journey).
- Personal counselling for issues related to caregiving (e.g., grief, depressed mood) when needed.
- Support groups accessible through a variety of delivery methods.
- Individualized information about the medical, cognitive and functional needs of the care recipient, and how to meet these, using appropriate health literacy principles.
- Individualized information and coaching to address specific issues confronting the caregiver (e.g., paranoid behaviours) using adult education principles.
- Information about community resources and support to navigate the system.
A system that sustains caregiving also ensures that transition crises, premature placement or hospitalization are minimized. Policies and programs should to be flexible enough to respond to individual and immediate needs. Service delivery policies need to take into account the caregivers’ schedule and needs (including those of the care recipient), which may, for example, occur outside business hours. The need to always plan in advance and wait lists for accessing and receiving services should be avoided. Perhaps most importantly, accessibility and flexibility of polices, programs, and services means that they are proactive where the burden of ‘not knowing the right questions to ask’ or what services exist is not placed on the caregiver. This means asking – Does the policy, program, or service support caregivers in such a way that crises and excess use of system supports are likely to be avoided?
Components of a sustainable system of support for caregivers include: 1) front-line staff with appropriate education, training, and relationship skills to support caregivers as well as care receivers; 2) programs, policies and services based on best practices, and 3) evaluation and monitoring mechanisms of policies, programs and services that include caregivers’ perspectives. Health professionals and other service providers often need training on how to better communicate with and involve family caregivers as part of the care team. Additionally, to facilitate sustainable caregiving, caregivers and care receivers should receive support and services that reflect their cultural and linguistic backgrounds. Sustainable caregiving means that programs, policies and services must recognize that initiatives to support care receivers influence the degree of caregiving required, and that initiatives for both populations are mutually supportive.
- Is there sufficient flexibility in policies (e.g., eligibility, implementation and service delivery) for preventative action?
- Are services offered proactively and provided before needs reach crises proportion?
- Is there sufficient capacity and flexibility to respond to crises in a timely manner without escalating needs?
- Is there a menu of options to provide for the information, support (including financial), and education needs of caregivers?
- Are service providers educated about, and sensitive to, the needs of caregivers and how to support them?
- Do service providers have the appropriate knowledge, skills and supervision to provide sensitive and competent care to care recipients?
- Is the number of different service providers/workers kept to the minimum, encouraging trust, relationship building and continuity of care?
- Do service providers have the time, skill and support to develop caring, trusting relationships? Do the hours of services provided to the care recipient take into account the caregivers’ preferred schedule?
- Are the services for the care recipient affordable to them (e.g., scaled fees or not requiring caregiver to pay)?
- Is transportation attached to seniors’ programs outside of home, appointments etc., and when desired, does it allow the caregiver to accompany the care recipient?
The impacts of policies can be long term, intergenerational and society-wide, and can affect different populations differently- benefitting some and disadvantaging others. In examining and developing caregiver policy, it is important to consider whether the policy is fair not only to today’s caregivers but also to those of tomorrow. The provision of elder care can affect private business productivity and profits as well as both the public and private sectors of the economy. Brink (2004) argues that policy development must examine the data on elder care from the perspective of the senior, the caregiver, the worker and the employer as well as the macro view of the labour force, caregiver pool and the economy. For example, it is possible that a policy that benefits caregivers of seniors may impact workers and their families negatively. Furthermore, while health outcomes may be positive, economic and social effects may be detrimental for one or more groups.
- Are eligibility criteria disclosed with rationale for exclusions and mitigation strategies provided?
- Are individual needs balanced with those of the larger group (e.g., behavioural challenges of individuals in a congregate living setting)