This document summarizes a presentation on promoting family resilience when parenting a child with a chronic illness. It discusses common challenges families face, including loss of control, anxiety, and financial concerns. It emphasizes the importance of open communication between family members, maintaining routines, and finding time for self-care. The presentation provides advice directly from parents and children on maintaining relationships, social support systems, and a positive attitude during difficult times.
Jennifer Hanratty presentation from the 2021 Reaching Out, Supporting Families conference on building connections to strengthen families in Northern Ireland.
Children are placed in foster care every day. There is a need for people to learn more about foster care and the needs of the children, youth and families impacted by the child welfare system.
Jennifer Hanratty presentation from the 2021 Reaching Out, Supporting Families conference on building connections to strengthen families in Northern Ireland.
Children are placed in foster care every day. There is a need for people to learn more about foster care and the needs of the children, youth and families impacted by the child welfare system.
This workshop helps ministry leaders to recognize situations when anxiety represents a barrier to participation in Awana activities and develop strategies for welcoming and including kids with all types of anxiety into your programming.
Autimisms - An Optimistic View of Life on the SpectrumJodi Murphy
Our inspirational little e-book of optimism from the women who work with, support and love someone on the autism spectrum. We hope our words lift you up and help you on your own autism journey.
This workshop is designed to help Awana leaders and volunteers develop strategies for serving kids at risk for behaving aggressively during ministry activities.
Powerpoint parenting plans for children with special needsBrenda McCreight
Children who have special needs require specialized parenting plans that reflect the child's unique capacity to make transitions, to have health care needs met, and to have therapeutic services provided in each home.
This workshop helps ministry leaders to recognize situations when anxiety represents a barrier to participation in Awana activities and develop strategies for welcoming and including kids with all types of anxiety into your programming.
Autimisms - An Optimistic View of Life on the SpectrumJodi Murphy
Our inspirational little e-book of optimism from the women who work with, support and love someone on the autism spectrum. We hope our words lift you up and help you on your own autism journey.
This workshop is designed to help Awana leaders and volunteers develop strategies for serving kids at risk for behaving aggressively during ministry activities.
Powerpoint parenting plans for children with special needsBrenda McCreight
Children who have special needs require specialized parenting plans that reflect the child's unique capacity to make transitions, to have health care needs met, and to have therapeutic services provided in each home.
Parent Experience of Stress and Coping When Caring for a Child With Mitochond...mitoaction
* Describe what is known about stress and coping when caring for a child with chronic illness
* Describe what is known about the needs of parents caring for a child with Mito
* Discuss the importance of identifying the specific needs of stress and coping for parents of children with Mito
Illness as a stress and coping with illness is the topic of this power point presentation and it includes the descriptions of stress, stress in acute and chronic illnesses and stress in terminal illness.
I think it will be useful to public, medical students and doctors as well.
When Cancer Changes our Relationship with Our Childrenbkling
When a parent has cancer the whole family experiences the trauma of the diagnosis and it can have untold affects on our children and our relationships with our children. Join us and our guest speaker Haley Pollack, Co-Founder and Executive Director of Bright Spot Network, to learn some ways to remain connected to your children while you are navigating a cancer diagnosis, its treatment, and its aftermath. There will be plenty of time to talk with others who are also navigating their own changing relationship to their children in the shadow of their cancer diagnosis.
Post by TerryAdolescent rebellionIn the discussion of adolesce.docxChantellPantoja184
Post by Terry
Adolescent rebellion
In the discussion of adolescent rebellion, it is important to “examine any potential environmental causes or influences of an adolescent’s maladaptive behavior” (Martin, 2014, p. 128). Most adolescents to do not intentionally set out to conduct themselves in antisocial delinquent behaviors; they normally are a result of the environment in which they live and how they react to that environment. For example, if an adolescent has a temperament which is prone to acting out or attention seeking, then he or she may not positively react to a divorce or constant bullying. Further, a child that grows up in a single parent family in a drug infested, poverty stricken neighborhood has a higher probability of engaging in delinquent behavior than a child who grows up in an affluent suburb. The problem intensifies when the adolescent has no outlet in which to express their anger and emotions. Often, these adolescents receive no guidance from home on how to react to stresses in life due to a single parent working multiple jobs in order to make ends meet or because they have no parents.
In these instances, it is critical for Christians and the Church to take these troubled adolescents into our fold and instruct them in areas they may not receive instruction by any other means. It is our duty, as stated in James 1:27, to “visit the fatherless and widows in their tribulation.” If we, as a Church, were more interested in looking after the fatherless in their communities, we could cut our juvenile delinquent problem in half. Concerning the fatherless and poor, Psalm 81:5 tells us that they walk in darkness without understanding. They need the Gospel brought to them and instructed to them with love and compassion.
Martin, M. E. (2014). Introduction to human services. (3rd ed.). Upper Saddle River, NJ: Pearson Education.
Post by Melissa
Teenage Pregnancy
Teen pregnancy is an important issue that is currently occurring in the human services field. One of the primary causes of teenage pregnancy is having sex unprotected (Understanding cause and effects of teenage pregnancy, n.d.). Other issues that occur that can bring about teenage pregnancy is drug as well as alcohol use, stressful life, being involved in the wrong crowd, being exposed to violence, living situation as well as financial difficulties (Understanding cause and effects of teenage pregnancy, n.d.). Some other causes are absent parents, lack of knowledge, being abused, being pressured by peers, and seeing pregnancy in the media (Langham, 2014).
Before, during, and after pregnancy, teens can experience even more problems. They may have more medical issues when giving birth (Bodeeb, 2014). They may not have anyone to watch their baby once they are born and may experience depression, exhaustion as well as a variety of emotional issues (Bodeeb, 2014). They may have to delay going back and finishing school (Bodeeb, 2014). They may have more financial issues and .
Ethanol (CH3CH2OH), or beverage alcohol, is a two-carbon alcohol
that is rapidly distributed in the body and brain. Ethanol alters many
neurochemical systems and has rewarding and addictive properties. It
is the oldest recreational drug and likely contributes to more morbidity,
mortality, and public health costs than all illicit drugs combined. The
5th edition of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) integrates alcohol abuse and alcohol dependence into a single
disorder called alcohol use disorder (AUD), with mild, moderate,
and severe subclassifications (American Psychiatric Association, 2013).
In the DSM-5, all types of substance abuse and dependence have been
combined into a single substance use disorder (SUD) on a continuum
from mild to severe. A diagnosis of AUD requires that at least two of
the 11 DSM-5 behaviors be present within a 12-month period (mild
AUD: 2–3 criteria; moderate AUD: 4–5 criteria; severe AUD: 6–11 criteria).
The four main behavioral effects of AUD are impaired control over
drinking, negative social consequences, risky use, and altered physiological
effects (tolerance, withdrawal). This chapter presents an overview
of the prevalence and harmful consequences of AUD in the U.S.,
the systemic nature of the disease, neurocircuitry and stages of AUD,
comorbidities, fetal alcohol spectrum disorders, genetic risk factors, and
pharmacotherapies for AUD.
New Directions in Targeted Therapeutic Approaches for Older Adults With Mantl...i3 Health
i3 Health is pleased to make the speaker slides from this activity available for use as a non-accredited self-study or teaching resource.
This slide deck presented by Dr. Kami Maddocks, Professor-Clinical in the Division of Hematology and
Associate Division Director for Ambulatory Operations
The Ohio State University Comprehensive Cancer Center, will provide insight into new directions in targeted therapeutic approaches for older adults with mantle cell lymphoma.
STATEMENT OF NEED
Mantle cell lymphoma (MCL) is a rare, aggressive B-cell non-Hodgkin lymphoma (NHL) accounting for 5% to 7% of all lymphomas. Its prognosis ranges from indolent disease that does not require treatment for years to very aggressive disease, which is associated with poor survival (Silkenstedt et al, 2021). Typically, MCL is diagnosed at advanced stage and in older patients who cannot tolerate intensive therapy (NCCN, 2022). Although recent advances have slightly increased remission rates, recurrence and relapse remain very common, leading to a median overall survival between 3 and 6 years (LLS, 2021). Though there are several effective options, progress is still needed towards establishing an accepted frontline approach for MCL (Castellino et al, 2022). Treatment selection and management of MCL are complicated by the heterogeneity of prognosis, advanced age and comorbidities of patients, and lack of an established standard approach for treatment, making it vital that clinicians be familiar with the latest research and advances in this area. In this activity chaired by Michael Wang, MD, Professor in the Department of Lymphoma & Myeloma at MD Anderson Cancer Center, expert faculty will discuss prognostic factors informing treatment, the promising results of recent trials in new therapeutic approaches, and the implications of treatment resistance in therapeutic selection for MCL.
Target Audience
Hematology/oncology fellows, attending faculty, and other health care professionals involved in the treatment of patients with mantle cell lymphoma (MCL).
Learning Objectives
1.) Identify clinical and biological prognostic factors that can guide treatment decision making for older adults with MCL
2.) Evaluate emerging data on targeted therapeutic approaches for treatment-naive and relapsed/refractory MCL and their applicability to older adults
3.) Assess mechanisms of resistance to targeted therapies for MCL and their implications for treatment selection
ARTIFICIAL INTELLIGENCE IN HEALTHCARE.pdfAnujkumaranit
Artificial intelligence (AI) refers to the simulation of human intelligence processes by machines, especially computer systems. It encompasses tasks such as learning, reasoning, problem-solving, perception, and language understanding. AI technologies are revolutionizing various fields, from healthcare to finance, by enabling machines to perform tasks that typically require human intelligence.
Pulmonary Thromboembolism - etilogy, types, medical- Surgical and nursing man...VarunMahajani
Disruption of blood supply to lung alveoli due to blockage of one or more pulmonary blood vessels is called as Pulmonary thromboembolism. In this presentation we will discuss its causes, types and its management in depth.
These lecture slides, by Dr Sidra Arshad, offer a quick overview of physiological basis of a normal electrocardiogram.
Learning objectives:
1. Define an electrocardiogram (ECG) and electrocardiography
2. Describe how dipoles generated by the heart produce the waveforms of the ECG
3. Describe the components of a normal electrocardiogram of a typical bipolar leads (limb II)
4. Differentiate between intervals and segments
5. Enlist some common indications for obtaining an ECG
Study Resources:
1. Chapter 11, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 9, Human Physiology - From Cells to Systems, Lauralee Sherwood, 9th edition
3. Chapter 29, Ganong’s Review of Medical Physiology, 26th edition
4. Electrocardiogram, StatPearls - https://www.ncbi.nlm.nih.gov/books/NBK549803/
5. ECG in Medical Practice by ABM Abdullah, 4th edition
6. ECG Basics, http://www.nataliescasebook.com/tag/e-c-g-basics
Prix Galien International 2024 Forum ProgramLevi Shapiro
June 20, 2024, Prix Galien International and Jerusalem Ethics Forum in ROME. Detailed agenda including panels:
- ADVANCES IN CARDIOLOGY: A NEW PARADIGM IS COMING
- WOMEN’S HEALTH: FERTILITY PRESERVATION
- WHAT’S NEW IN THE TREATMENT OF INFECTIOUS,
ONCOLOGICAL AND INFLAMMATORY SKIN DISEASES?
- ARTIFICIAL INTELLIGENCE AND ETHICS
- GENE THERAPY
- BEYOND BORDERS: GLOBAL INITIATIVES FOR DEMOCRATIZING LIFE SCIENCE TECHNOLOGIES AND PROMOTING ACCESS TO HEALTHCARE
- ETHICAL CHALLENGES IN LIFE SCIENCES
- Prix Galien International Awards Ceremony
Ozempic: Preoperative Management of Patients on GLP-1 Receptor Agonists Saeid Safari
Preoperative Management of Patients on GLP-1 Receptor Agonists like Ozempic and Semiglutide
ASA GUIDELINE
NYSORA Guideline
2 Case Reports of Gastric Ultrasound
These simplified slides by Dr. Sidra Arshad present an overview of the non-respiratory functions of the respiratory tract.
Learning objectives:
1. Enlist the non-respiratory functions of the respiratory tract
2. Briefly explain how these functions are carried out
3. Discuss the significance of dead space
4. Differentiate between minute ventilation and alveolar ventilation
5. Describe the cough and sneeze reflexes
Study Resources:
1. Chapter 39, Guyton and Hall Textbook of Medical Physiology, 14th edition
2. Chapter 34, Ganong’s Review of Medical Physiology, 26th edition
3. Chapter 17, Human Physiology by Lauralee Sherwood, 9th edition
4. Non-respiratory functions of the lungs https://academic.oup.com/bjaed/article/13/3/98/278874
Anti ulcer drugs and their Advance pharmacology ||
Anti-ulcer drugs are medications used to prevent and treat ulcers in the stomach and upper part of the small intestine (duodenal ulcers). These ulcers are often caused by an imbalance between stomach acid and the mucosal lining, which protects the stomach lining.
||Scope: Overview of various classes of anti-ulcer drugs, their mechanisms of action, indications, side effects, and clinical considerations.
Title: Sense of Taste
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the structure and function of taste buds.
Describe the relationship between the taste threshold and taste index of common substances.
Explain the chemical basis and signal transduction of taste perception for each type of primary taste sensation.
Recognize different abnormalities of taste perception and their causes.
Key Topics:
Significance of Taste Sensation:
Differentiation between pleasant and harmful food
Influence on behavior
Selection of food based on metabolic needs
Receptors of Taste:
Taste buds on the tongue
Influence of sense of smell, texture of food, and pain stimulation (e.g., by pepper)
Primary and Secondary Taste Sensations:
Primary taste sensations: Sweet, Sour, Salty, Bitter, Umami
Chemical basis and signal transduction mechanisms for each taste
Taste Threshold and Index:
Taste threshold values for Sweet (sucrose), Salty (NaCl), Sour (HCl), and Bitter (Quinine)
Taste index relationship: Inversely proportional to taste threshold
Taste Blindness:
Inability to taste certain substances, particularly thiourea compounds
Example: Phenylthiocarbamide
Structure and Function of Taste Buds:
Composition: Epithelial cells, Sustentacular/Supporting cells, Taste cells, Basal cells
Features: Taste pores, Taste hairs/microvilli, and Taste nerve fibers
Location of Taste Buds:
Found in papillae of the tongue (Fungiform, Circumvallate, Foliate)
Also present on the palate, tonsillar pillars, epiglottis, and proximal esophagus
Mechanism of Taste Stimulation:
Interaction of taste substances with receptors on microvilli
Signal transduction pathways for Umami, Sweet, Bitter, Sour, and Salty tastes
Taste Sensitivity and Adaptation:
Decrease in sensitivity with age
Rapid adaptation of taste sensation
Role of Saliva in Taste:
Dissolution of tastants to reach receptors
Washing away the stimulus
Taste Preferences and Aversions:
Mechanisms behind taste preference and aversion
Influence of receptors and neural pathways
Impact of Sensory Nerve Damage:
Degeneration of taste buds if the sensory nerve fiber is cut
Abnormalities of Taste Detection:
Conditions: Ageusia, Hypogeusia, Dysgeusia (parageusia)
Causes: Nerve damage, neurological disorders, infections, poor oral hygiene, adverse drug effects, deficiencies, aging, tobacco use, altered neurotransmitter levels
Neurotransmitters and Taste Threshold:
Effects of serotonin (5-HT) and norepinephrine (NE) on taste sensitivity
Supertasters:
25% of the population with heightened sensitivity to taste, especially bitterness
Increased number of fungiform papillae
Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
As flu season approaches, health officials in Bangalore, Karnataka, are urging residents to get their flu vaccinations. The seasonal flu, while common, can lead to severe health complications, particularly for vulnerable populations such as young children, the elderly, and those with underlying health conditions.
Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
- Video recording of this lecture in English language: https://youtu.be/lK81BzxMqdo
- Video recording of this lecture in Arabic language: https://youtu.be/Ve4P0COk9OI
- Link to download the book free: https://nephrotube.blogspot.com/p/nephrotube-nephrology-books.html
- Link to NephroTube website: www.NephroTube.com
- Link to NephroTube social media accounts: https://nephrotube.blogspot.com/p/join-nephrotube-on-social-media.html
Triangles of Neck and Clinical Correlation by Dr. RIG.pptx
Resilient Family, Resilient Kid
1. Resilient Family, Resilient Child… Juvenile Arthritis Conference Washington, DC July 7-10, 2011 Shelia Rittgers, MSW Licensed Clinical Social Worker Duke University Hospital
2. Goals Look at the challenges of parenting a child with a chronic illness Identify interventions that help promote a healthy family, marriage and resiliency in a child with a chronic illness Identify resources to assist families coping with a child with a chronic illness
3. It’s a Family Affair “Chronic illness doesn’t just affect the person with the condition. The whole family must come to terms with the illness, make major changes in schedules, priorities, and some how manage to remain a family.” J. Laundry, M.D. and L. Boujaoude, M.D. Your Child: Development and Behavior Resources
4. “…it is not the child’s disability that handicaps and disintegrates families; it is the way they react to it and to each other” Dickman & Gordon: One Miracle at a Time: How to Get Help For Your Disabled Child-From the Experience of Other Parents
5. Common Challenges Loss of control Anxiety Anger/resentment Sadness Guilt Financial concerns How to manage everything!
6. “The day we were told the diagnosis began what we called the train ride. We weren’t asked to hop on board and we can’t jump off.” Allison’s mom Finding Our Way, Dartmouth STAR Program, Dartmouth Children’s Hospital
7. Family Maintenance Plan Education Communication Social Support Perception Routine yet flexible Organization R & R
8. “ I was so busy taking care of Allison that I often neglected myself. I’m fine, healthy but I often feel that my “cup is empty” and I wasn’t a good role model.”Allison’s motherFinding Our Way, Dartmouth STAR Program, Dartmouth Children’s Hospital
19. “I’m a person, not just a disease... that’s not all that I’m about. Sometimes I have to remind myself about that as much as I do other people.” - Derek-Teens Face to Face With ChronicIllness, by Suzanne LeVert
20. What Our Kids Have to Say…“I must be the first teen ever to complain about this. I don’t have any chores to do at home. My brother and sister both have things they have to do. They each have ‘everyday’ jobs- making up their beds and one other thing like washing the dishes. Then they have a ‘weekend job’ like washing the kitchen floor or cleaning the bathroom. They both feel resentful that I don’t help out. I feel useless.”Easy For You To Say:Q & A’s for Teens Living with Chronic Illness or Disability by Miriam Kaufman, M.D.
21. What Our Kids Have to Say… “Every time I leave the house, my mother asks if I have medication in case I have a flare-up, even if I’m just going to the store… and to call if I’m too tired to walk home. And she says this in front of my friends so I feel like a baby.” -Kathleen- Teens Face to Face With Chronic Illnessby Suzanne LeVert
22. Nurturing the Bounce Back Child Listen and Educate Provide Choices Promote Responsibility Thinking Outside the Box Promote Good Job Attendance Socialize and Remain Active Attitude Your living is determined not so much by what life brings you…as by the attitude you bring to life. John H. Mills
23. Words Of Advice…“I guess one thing I’ve learned from having arthritis is that man is a very adaptable animal. If you can’t do something one way, there’s sure to be another way that’ll work.”-Carl-Teens Face to Face With Chronic Illnessby Suzanne LeVert
27. Have arthritis? Here by chance because you know someone who does? Then you've come to the right place. Welcome to CreakyJoints, a community for people of all ages with arthritis who want to live their lives despite their condition. A place where having a little chronic pain (or even a lot of chronic pain) is OK, because there are others within earshot who understand. www.creakyjoints.com
28. Decision Making for Teenagers with Arthritis Includes advice on choosing a career, preparing for after high school, the school-to-work transition, going to college, paying for your education, work, financial and social security benefits, and tips for living on your own. The Arthritis Foundation
29. Teens Face to Face With Chronic Illness Suzanne LeVert
30. Learn about treatments, practical tips for dealing with school, peers, plus some personal stories
31. Find out what happens when the school project is about you Jennifer has a secret. Can she keep it? Should she?
32. FamilyVillage-online forum for discussion about any kind of health related issue for adults and children www.familyvillage.wisc.edu Brave Kids-online information and resource website for children with chronic illness, life threatening illness and disabilities www.bravekids.org
33. Bandaides andBlackboards-online site about growing up with medical problems www.lehmans.cuny.edu Exceptional Children’s AssistanceCenter-online site focusing on educational needs, parent advocacy and health information www.ecac-parentcenter.org
Editor's Notes
Looking a system- a family is not a closed system there are many things that impact it each day and larger things such as a job change, a move and illness bring about more change and can have an even greater impact on those who make up the system
What do statistics say about the divorce rate of parents with a chronically ill child?Many studies but none conclusively linked the chronic illness of a child to divorce and many report that parents who did get divorced after dx had an underlying problem in the marriage prior to the child’s dx. There are differences in rates depending on the illness and the severity of it and most studies do indicate that there is more discord and divorce in families where the child is severely impaired by their illness.Just the daily stresses and needs of a family can be sometimes feel overwhelming-what about the added challenge of a child with a chronic health problem?This situation can lead to a crisis or an environment of operating in chronic stress mode but it does not have to lead to the this or the end of a marriage. This is where resileincy comes into play.Hodapp&Krasner 1995; Ziolko, 1991, Wallander&Noojin 1995; Syse&Lodge 2009 Norweigan study
You can’t control the fact that your child has JIA but you can begin to move toward acceptance of the reality of the situation and the need to live a different kind of life than what you were living. Your values have not changed but your situation has.
Your marriage really comes first. It sets the tone for the health of the family system. Nurturing and strengthening it can make a difference in the way the family group manages the added stress of a child’s illness and influence the meaning that is given to this particular challenge (perception) So I want to take some time to focus on taking care of your marriage.As individuals we have differences of opinion, individual coping styles and risk of miscommunication based on gender differenceThese are tendencies not facts chiseled into stoneWe look at things from a gender perspective whether biological or social development ..cultural etc.Women look at things from a relational perspective, men are often more focused on the goal, the end result of the task,situationIf all else fails, read the manual
Talk to each other. Don’t allow tension to build up, share your concerns and feelings.Debrief Really listen-focus on your spouse, have an empty mind not be searching for an answer while spouse is talking to you. If u do this u will find that you can be more attentive and understandingDifferent views can be valuable. It pushes us to think more about what we believe and we can look for common ground to create a solution.Look to understand the distress, what is behind it-values, experiences of life—helps you stop and be less ready to judge during a disagreement.When disagreeing focus on the problem not the person- if you are struggling, in a disagreement I would suggest that practice suspending judgment if you will.n It goes back to being a good listener. When this is happening think about the values, beliefs he/she is representing that are behind how they are feeling. Ex. Of the lady w the dogIF you need to step away to cool down-use the Benefactor exercise—think about who in your life has always had your back, loved you unconditionally (maybe a grandmother, grandfather, your parent. Envision that person in your mind, how they made you feel, find yourself relaxing and getting the focus back on the problem that needs to be resolved not how much you don’t like how he/she acts etc.Bitter, party of one. It will destroy you and your marriage
Mom’s often focus on the emotional health of the family/part of role is to take child to appts, responsible for meds.Risk that the other parent gets out of touch w what is going on, questions asked about tx, why didn’t u ask this question or that one-makes the caregiver feel undermined, second guessing going on-give Charlie B and Kathryn E examplesChanging up things can be nice, help you see things in a different way, nice for kids to see both parents in caretaking role, interacting w MD’s etc.Extremely important to take time to be alone, nurture your relationship. This could be a quick lunch, little love note, a night out, a walk. Be honest and considerate of each others needs. You are mom/dad, chaffeur, nursing assistant , but you were friends and lovers first.. Don’t lose that focusSupport of friends and family is important. Don’t hesitate to enlist their help to ease the stress you are feelings. Blow off steam, They can be a listening post or a baby sitter, errand runner, what ever you need. If you feel that you are struggling and need neutral assistance from someone outside of your circle of support, please do not hesitate to meet with a professional.
I believe that the process of transition-that is preparing your children to move to the adult world of medicine and self care starts early on in their care.TALK to your child and to your other do they thing is happening to them. I have met w frightened children who thot the reason no one was talkng to them about why they were seeing so many doctors was bec they were going to die and no one wanted to tell them. I have had others who were very distressed about their friends finding out or asking questions bec they did not know how to tell them about their illness . Carefully listen to what they are saying or not saying to you and include them as appropriate in discussions that are going to impact them as well as correct any misunderstandings they have.
Talk about Tom—17 , unsure of himself, began to believe that he was “so different” from peers that he wouldn’t get a job, wasn’ta what his future would be. When challenged he could not see beyond his small circle of friends/family who it seems often said to him—you sure you want to do that, can you do this that or you can’t due to his arthritis. We talked a lot about identifying what he like, skills and he ended up working w Voc Reb. To obtain job training.