Presentation Overview

Overview of the Concept of Caregiver Stress and Other Related Concepts Gaps Between Caregivers and OT Professionals Identifying Sources of Caregiver Stress in Aspergers Syndrome Context

Presentation Overview (cont.)

Why OT Community Has to Pay Attention to What Was Said About Them Online Limitations in Addressing the Needs of Caregivers in OT Settings Identifying Solutions to Within OT Settings

Terminology Overview
Life = Configurations of everyday patterns of occupation meeting essential human needs (Matuska & Christiansen, 2008) Lifestyle balance = unique patterns of occupation enable needs essential to resilience, well-being, and quality of life are wellmet (Matuska & Christiansen, 2008)

Terminology Overview (cont.)

Role strain/Role burden = stress or strain experienced by an individual when incompatible behavior, expectations, or obligations are associated with a single social role. (dictionary.com)

5 Dimensions of the Model of Lifestyle Balance

Rewarding & self-affirming relationships selfwith others- #1 othersFeeling interested, engaged, challenged, and competent- #2 competentCreating meaning and a positive personal identityidentity- #3

5 Dimensions of the Model of Lifestyle Balance (cont.)

Organizing time and energy to meet importance personal goal and personal renewalrenewal- #4 Biological health and physical safety- #5 safety(Matuska & Christensen, 2008; Stein et. Al, 2011)

5 Dimensions of the Model of Lifestyle Balance (cont.)

(Stein et. Al, 2011) #1- Caring for a child with ASD can alter a parents social supports and relationships with friends, family, and others. Bills research #1- This is dependent on family to family. Some families can be accepting. Some families can be in denial/refusal to accept. However, proactive parents can find support by befriending other parents and knowledgeable Aspies on places such as Facebook, where they could find others who might better understand what they are going through.

5 Dimensions of the Model of Lifestyle Balance (cont.)

(Stein et. Al, 2011) #2- Parents of children with ASD may have particular challenges with providing appropriate services and care, fostering development and feeling engaged with their child, and managing behaviors. These challenges can lead to feelings of incompetence in the parenting role. Bills research #2- These challenges is caused by a problem with health literacy in the general public. So, parents would end up asking other parents or consumers who happen to know more than they do. Parents do feel incompetent when they posted questions about their challenges, but would often be relieved if someone can provide them with possible solutions.

5 Dimensions of the Model of Lifestyle Balance (cont.)

(Stein et. Al, 2011) #3- For some parents, caring for a child with ASD results in increased life satisfaction, but many others experience a loss of self and feelings of being trapped in the role of caregiver as they struggle to maintain their individual identity Bills research #3- This varies from parent to parent. Their support network and knowledge of autism can have a correlation with their life satisfaction.

5 Dimensions of the Model of Lifestyle Balance (cont.)

(Stein et. Al, 2011) #4- The lives of parents of children with ASD are often dominated by the needs of the child, leaving parents with little time to engage in other personally meaningful occupations. Bills research #4- Same as the article had mentioned, for the most part. However, proactive parents have learned to enfold their occupationsparticularly when they are on the computer. Their interactions with other parents and Aspies can be potentially therapeutic- whether its finding answers to their own questions or other peoples questions.

5 Dimensions of the Model of Lifestyle Balance (cont.)

(Stein et. Al, 2011) #5- Parents of children with ASD are at increased risk for stress, anxiety, depressive feelings, poor sleep quality and quantity, decreased daily mood, and decreased perceived well-being. Bills research #5- The article is right on target. Hence, Internet (such as Facebook groups and fan pages) have become popular sounding boards for parents to express these feelings in their quest of finding answers for their children with ASD.

Gaps Between Caregivers and OT Professionals

OT OTs capacities to develop effective relationships depend on the institutional environment of their workplace. Parents are often involved in initiating referrals or expressing their concerns, but their involvement in framing the problem is limited. (Lawlor & Mattingly, 1998)

Gaps Between Caregivers and OT Professionals (cont.)

A lot of parents might have little or no knowledge of what they are in for, or what the professionals are looking for. Time constraints make matters worse. Even if the parents are well-informed, parents wellmight not realize the importance of their roles for their children. (Woods & Lindeman, 2008)

Gaps Between Caregivers and OT Professionals (cont.)

Even though parents and professionals share the same objectives, parents dont don care as much about rules and regulations that OTs and other professionals might have OT to deal with. Aspies Aspies behavior might differ between the therapy setting and other common common settings

Gaps Between Caregivers and OT Professionals (cont.)

Parents and OT professionals interpreting things differently about the child. Parents could have tough times grasping the OT concepts/theories that we know.

Parents Voices on the Internet and Their Importance

Parents are on online support groups for the following reasons.
Finding support and/or solutions to their problems in their daily lives Offering support and/or solutions to other parents or individual Aspies Ranting about their current situation

Notable Online Posts

I wonder if my nearly 9 yr old Aspie daughter will ever get to the point of doing things independent of me guiding/prodding her along or doing it myself for her. She can spend over a half hour just standing there in the shower spacing out without even starting to wash up- and upthat with being told several times to start shampooing. Anyone with an older Aspie? Have they got past that, or is stuff like that continuing to be a problem?

Notable Online Posts

Hello. My son is 11 and in year six in primary school. Yesterday after school he sat down with me and i could see he was upset. He started to tell me that one of his class mates told him that his dad said he was not allowed to play with him anymore . of course being an aspi he could not compute this one bit. He broke down in tears. I just had to say to my son that there will always be people who won't understand. Or don't want to understand. All part of the rocky road i think.

Notable Online Posts

How do other parents of asperger children deal w/family members who exclude them from family functions. The most recent was his cousins wedding, he was only invited to the ceremony and the family pictures after the ceremony, but, not to the reception. He was almost 12 at that time and he would have been fine. We almost did not go, and we have decided that when he 2 other cousins get married if Josh is not invited we will not go. What would others do in this situation?

Notable Online Posts

my son was diagnosed with aspergers syndrome 2009 and for a single parent like myself can be very stressful at times i would like to take this opportunity and share this with you all hoping you can give me some answers first of my son is a compulsive eater he attends a dietician he cant stop eating i try my best to give him the best fruit and veg he has plummetted to nearly 9 stone and he is only 9yrs of age pls can you advise me if this is all part of the autism too :@?

Finding Support/Solutions
Parenting is a 24/7/365 occupation. 24/7/365 OT sessions for their child only represents a small percentage their overall life. The initial poster is usually desperate for answersanswers- feelings included anxiety, selfselfblame, grief, and acknowledgement (Klein et. acknowledgement Al, 2011)

Offering Support/Solutions
Everyone treats each other as family, especially in advices goes. They understand that some of the processes can be overwhelming for parents who are new to the diagnosis. Potential therapeutic benefits

Rants
Typically they are things that are left unsaid in OT settings If they are said, you have to reflect on the comments and see if you have done your job. Support groups (particularly ones on the Internet) has become a commonplace for these rants.

Why Do We Have to Be Aware?

Good feedback on whether our profession as a whole has done a good job on familyfamilycentered care or not. Our chance to ADVOCATE and CLARIFY about what we do or dont do!!! don

Why Do We Have to Be Aware? (cont.)

Assistance to parents on how to give constructive criticism to our colleagues (if necessary). Avenue to educate parents where we might not have otherwise due to time constraints. Practice to explain your clinical reasoning and what we know in clinic settings!

Why Do We Have to Be Aware?

Open dialogue between parents and OT- in our OTrole to be advocates for them and their child Parents will join as many of these groups as possible to find answers. Our interventions shouldnt be only childshouldn childspecific with narrow sensory perspectives. (Rodger et. Al, 2010)

Hands On Activity
Hands on the Activity- 5 minutes ActivityBrainstorm potential sources of caregiver stress.

Potential Sources of Caregiver Stress

Ability to access services (e.g. Socioeconomic status) Search for appropriate services and/or medications Attempt to understand what they could about AS and the things they will be in for

Potential Sources of Caregiver Stress

Altered routine in getting their kids to different services, on top of the existing familyfamily-related occupations. (Werner(WernerDeGrace, 2004; Mailick Seltzer et. Al, 2001) Their aspies behavior aspies Differences in opinion between the parents and the professionals (e.g. over services)

Potential Sources of Caregiver Stress

Running out of tricks to keep their aspies tricks aspies behavior in check Seeing that their aspies have few or no friends. Their aspies transitioning into a teenager as well as adulthood and their abilities to be independent.

Potential Sources of Caregiver Stress

Knowledge about Aspergers and how the Asperger diagnosis presents itself in their aspies. The news of the diagnosis impacting themselves and their families. Process of waiting for the diagnosis. (Lewis et. Al, 2010) Lack of support from family and/or friends.

Potential Sources of Caregiver Stress

People (family or strangers) making unjust unjust criticism (well intended or not) about their child in public. Sensory differences affecting choices of occupations; preparation and planning of occupations; overall experiences, meaning, and feelings of occupations (dependent on quality of experience) (Bagby et. Al, 2012)

Explanation of Factors
Parental stress is positively correlated with emotionalemotional-focused strategies and poorer quality of life. Perception of experiences as a threat have a positive correlation with poor ability to adapt. Parents perceiving their experiences as a challenge has a better relationship with their child and greater self-fulfillment. self-

Explanation of Factors
Parental feelings of ineffectiveness in parenting, lack of feelings for responsibility for child childs behavior, and perception of their childs child needs dominating their lives are associated with the increased reports of stress. Parents who have external loci of control and blame themselves for the problem tend to feel they have less control of their lives and their child.

Explanation of Factors
Parents feel a higher level of coherence are associated with seeking social support and selfself-controlling coping Parents who reported more guilty feelings ad who felt having poor control over their childs child development have less available social support.

Explanation of Factors
Parents who employ emotion focused strategies are more stressed, feel more disturbed in more areas of their lives, have decreased well-being, tend to experience more wellguilt and false beliefs of autism. (Cappe et. Al, in press)

OT Settings Limitations
Rigid specialization tend to cause gaps in service delivery, miscommunication, and limited attention to gray areas (Lawlor & areas Mattingly, 1998)
E.g. School-based OT settings School-

OT Settings Limitations (cont.)

Assessments Results
PDMSPDMS-2, VMI, BOT-2, SIPT, SPM, M-FUN, SFA BOTMAge range/limit for certain tests- PDMS-2, M-FUN, tests- PDMS- MSIPT Potential room for disagreement- particularly if disagreementthere is a school form and a home form.

OT Settings Limitations (cont.)

Parents have little or no knowledge of day-to-day day-tooperations in an OT setting. Hence, they might hire advocates and/or lawyers to attend IEP meetings. Time is very precious, especially considering how caseloads are stacked up. There might only be time for a brief overview of how the current days day session went.

OT Settings Limitations (cont.)

Rarely services are available for Aspies once they are past 21. Hence parents can have more difficulty finding services for their Aspies who are diagnosed at that age or later. Transitions (to high school and adulthood) are major areas of weakness of school based OT (from Interactive Session at Autism West Specialty Conference)

Hands on Activity #2
Identify possible solutions to help parents of Aspies. For each solution, please ALSO list AT LEAST1 pro and 1 con of each LEAST1 solution.(Practice areas of focusfocusPediatrics and Mental Health/Health and Wellness)Wellness)- 5 minutes

Solution #1- Pediatrics

Have parents observe your sessions, at least early on.
Pro: Parents can learn on the spot and ask questions. Con: Not necessarily feasible in all clinic settings.

Solution #2- Pediatrics

Give parents your email address (work or personal), allow parents to send you friend requests on Facebook, and/or provide your phone number.
Pro: Time to answer parents question and/or explain parents your clinical reasoning in detail Con: Parents generally want answers ASAP.

Solution #3- Pediatrics (also applies in M.H./H & W)

Provide links/information on online and/or offline support groups
Pro: Helps parents to not feel that they are alone. Con: Quality of these groups might vary. Parents might or might not like them.

Solution #4- Pediatrics (also applies in M.H./H & W)

Provide stress management sessions for the parents while their child receive services.
Pro: Can directly address potential well-being and wellquality of life issues. Con: Feasibility issues for the clinic as well as perhaps the parents.

Solution #5- Pediatrics (also applies in M.H./H & W)

Linking up parents with similar issues offline and/or online.
Pro: Parents can get reassurance that they are not alone. Con: HIPPA/Confidentiality (offline), might not have the time to go online (online)

Solution #6- Pediatrics (also applies in M.H./H & W)

Create a blog that speaks about your experiences in OT, with its target audience are parents.
Pro: Parents can get a better general idea of what is idea going on inside the setting you are working in. Con: Blog must be updated regularly in order for this to be useful (at least once a week).

Solution #7- Pediatrics (also applies in M.H./H & W)

Collaborate with other OTs in the facility to OT apply a divide and conquer approach to go conquer on different online support groups.
Pro: Great way to create an open dialogue between OT professionals and parents. Con: Many different groups out there.

Solution #8- Pediatrics (also applies in M.H./H & W)

Organize an Ask an Expert forum for Expert parents about stress management.
Pro: Parents could get valuable information on how to reduce their stress. Con: Logistics required (finding an expert, parents expert have to set aside time to attend the forum, etc.)

Solution #9- Pediatrics

Set aside time for heart-to-heart talk with heart-tothe parents on your caseload- whether its caseloadit email, text/video chat, or phone call once a month.
Pro: Family-centered service FamilyCon: How much time do you really have for each parent, especially if you work full time?

References
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References
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References
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