caregiver well-being
CAREGIVER WELL-BEING & ADVOCACY
Based on our experience and knowledge, we understand advocacy to be about empowering yourself or others and improving care for your loved ones. It is about raising awareness, disseminating knowledge, connecting people, and finding new ways to share information in order to approach gaps in healthcare. This starts with providing you with tools to review your own situation and advocate for your personal needs.
Our vision is to reduce needless suffering for you and your loved ones. We aim to do this through close collaboration and communication with parents/ caregivers and healthcare professionals. While our website provides you with information that might help you to streamline the care of your loved ones with
special needs, we also want to highlight the need for reflection about your own well being and family’s ecology. This way you might become a better advocate, as you will express your needs more specifically.
Our research has shown that the voice of patients was not only not heard in clinical history taking, but also not in the discussion or evaluation of clinical services. The following tools will help to change that.
YOUR OWN WELL-BEING
Explore your own current state of well-being, with the distress thermometer and fatigue scale beside.
See electronic detailed version below
National Comprehensive Cancer Network. (2020). NCCN Distress Thermometer and Problem List. Retrieved May 9, 2020, from https://www.nccn.org/about/
Ownby, K. K. (2019). Use of the Distress Thermometer in Clinical Practice. Journal of the Advanced Practitioner in Oncology, 10(2), 175–179. Retrieved from https://pubmed.ncbi.nlm.nih.
See electronic detailed version below
Single Item Fatigue Impact Scale (SIFIS)
Chan, A. D. F., Reid, G. J., Farvolden, P., Deane, M. Lou, & Bisaillon, S. (2003). Learning needs of patients with congestive heart failure. The Canadian Journal of Cardiology, 19(4), 413–417.
FAMILY ECOLOGY
Family ecology investigates features of a family’s ecology in order to design family-centered behaviour support plans. The concept of ecology helps to review stress and distress of parents, family ecology1–2 and the stress and distress of professional staff, review of ecologies3. The ecology concept encourages a curiosity driven, family-oriented language that neutralizes the conversation with empathy, as the explorative questions are presented organically within the flow of exploration, and not a questioning, which can often be experienced as patronizing.
Review the following questions:
What would you characterize as strengths of your family? What are your sources of stress? What are your sources of social support?
See electronic detailed version below
Lucyshyn, J., & Albin, R. (1993). Comprehensive support to families of children with disabilities and problem behaviors: keeping it “friendly”. In G. Singer, & L. Powers (Eds.), Families, disabilities, and empowerment: active coping skills and strategies for family interventions (pp. 365-407). Baltimore, MD: Paul H Brookes.
Lucyshyn, J., Albin, R., & Nixon, C. (1997). Embedding comprehensive behavioural support in family ecology: an experimental single-case analysis. Journal of Consulting & Clinical Psychology, 65, 241-251.
Stockler, S., Moeslinger, D., Herle, M., Wimmer, B., & Ipsiroglu, O. S. (2012). Cultural aspects in the management of inborn errors of metabolism. Journal of Inherited Metabolic Disease, 35(6), 1147-1153. doi: 10.1007/s10545-012-9455-4
Ipsiroglu, O. S. (2016). Applying ethnographic methodologies & ecology to unveil dimensions of sleep problems in children & youth with neurodevelopmental conditions [PhD, The University of British Columbia]. https://doi.org/10.14288/1.0223691
IS YOUR SLEEP AFFECTED BY YOUR CHILD?
Explore how your sleep may be affected or impaired by your child’s sleep disturbances, please see the electronic version beside.
See electronic detailed version below
Parent Sleep Related Impairment Short Form 8a
Yu, L., Buysse, D. J., Germain, A., Moul, D. E., Stover, A., Dodds, N. E., … Pilkonis, P. A. (2012). Development of Short Forms From the PROMISTM Sleep Disturbance and Sleep-Related Impairment Item Banks. Behavioral Sleep Medicine, 10(1), 6–24. https://doi.org/10.1080/
IS YOUR SLEEP AFFECTED IN GENERAL?
Explore your sleep situation independent of your child’s sleep disturbances, please see the electronic version beside.
See electronic detailed version below
Parent Sleep Disturbance Short Form 8a