Maternal Caregivers of Transplant Children
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Maternal Caregivers of Transplant Children

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Presentation to medical personnel discussing the procedures, problems, hopes and aspirations of maternal caregivers of transplant children.

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  • Title: The Second Chance SelfDescription: Presentation to medical personnel discussing the procedures, problems, hopes and aspirations of maternal caregivers of transplant children.Category: Health CareTags: organ transplant, kidney transplants, peritoneal dialysis, Cynthia Grace, Wayne Grace, maternal caregivers, posttraumatic stress, PTSD, posttraumatic growth, trauma, PTG, transformation
  • I am also the kidney donor and primary caregiver for Wayne, who experienced a trauma at birth that caused irreversible kidney failure.
  • After a rocky course of peritoneal dialysis, in 1992, at eight months of age, Wayne got his “Second Chance.” He was successfully transplanted. According to OPTN data, Wayne is one of 110 infants in the US to be transplanted under the age ofone year with an adult living donor kidney.He weighed 14 lbs at the time.
  • I was elated and grateful for Wayne’s ”Gift of Life” . . . He had come a long way whenwe celebrated his first birthday - only three months post transplant.But little did I understand at the time, that as the old song says, our journey . . . “had only just begun.”As one of the nurses told me in my dialysis training only six weeks after Wayne was born, Transplantation is a modality, not a cure!
  • As my son’s informal medical caregiver, I encountered multiple rounds of crisis pre-transplant and repetitive instances of traumatic events post- transplant. I had administered peritoneal dialysis at home to my infant son for months and . . .*I would continue to place feeding tubes for years,*spend countless hours in doctors offices, labs and hospitals *be rendered helpless in the face of multiple secondary illnesses,*anxiously await the results of biopsies for cancer on two separate occasions, *see my son through a dozen other surgeries,*witness indescribable occurrences of his suffering *and finally understand that he would never attain full cognitive capacity to live as a completely independent adult. As the mother and caregiver of a transplant child, what I would learn over the next two decades, is that my life and my identity would be irretrievably altered. *I would be “transformed” by my experience.
  • Leading me to the place where I am today, a potential research partner with you, the very medical team that saw Wayne through 18+ years of pre and post transplant life! As you can see, I am sharing some of my personal story of being a transplant mother and caregiver, because it’s my experience in these roles that led to a vision of connecting with other transplant mothers in a helping capacity, It’s what motivated my return to school to obtain a doctorate in clinical psychology and inspired me to choose the topic I did for this research project on Trauma, Posttraumatic Growth and Transformation.My experience of being a transplant mom and caregiver was the cause of my own posttraumatic stress and the catalyst for my experience of positive growth.
  • I’m pleased to provide highlights from the literature review on Trauma, PTG and Transformation and to share a brief outline of the research project.I’m excited to finally have the opportunity to explore if and how these phenomenaoccur in othermaternal caregivers of transplant children.I’m honored to have already begun conducting the research interviews with other transplant moms. There accounts have validated much of my own experience. There is definitely trauma, but there are also moving and promising “silver lining” stories, pointing to the possibility of lasting positive change.Coincidentally, five of those moms have transplant children who are seen here at the Stanford Clinic! Some of the stories they have shared reflect the incredible compassion and humanity this team so beautifully provides. I look forward to sharing parts of those with you once the research findings are concluded, which will be somewhere near the end of this coming August! [Pause]
  • As medical providers on a transplant team, you are quite familiar with the landscape of a post-transplant life, but let’s take a quick glance at what the studies reveal.
  • Based on the statistics, organ transplantation as a treatment modality is not going away.Transplantation has increased in All Age Groups and Organ Categories,According to OPTN data, a total of 12,623 transplants were performed in 1988 growing over time to a total of 568,055 transplants performed by 2013.Nearly 60% of those were kidney transplants.The waiting list also reveals current and growing demand in all age groups and categories,With nearly 80% of those on the waiting list in need of a kidney.
  • Although the majority of transplant recipients are adults, there has been a growing population of pediatric recipients since the 1970’s.Of the 568,055 total transplant performed to date,7% or 42,174 of those were Pediatric patients,and 43% or 18,289 were Kidney transplants.Of the 1,989 children awaiting organs, 909 or approximately 46% of them need a kidney.This may be great for your job security, but what does it mean for the families who are involved?
  • The research to date clearly indicates that patients as well as family members are susceptible to experiencing extreme distress both pre- and post-transplant.
  • The illness is not confined to the child. The entire family structure may be altered as the issues that impact the young patient will impact every family member (Kazak, 1989).Family may continue to have problems in normalizing interactions inside and outside family (Bradford, 1991).Parents of both transplant and dialysis children reported psychological stress associated with tx, marital relations, anxiety/depression in selves and child and behavioral issues in child (Brownridge and Fielding, 1991).Results of a quantitative study of children with nephrotic syndrome, chronic renal insufficiency and transplant, indicates that aspects of the family environment predict both psychosocial and medical adjustment in the pediatric kidney patient (Soliday, Kool & Lande 2001).While physical health, behavior, and family functioning improved post-transplant, parents required continued psychological and social support (Reynolds, Garralda, Postletwaite, and Goh,1991).The transplant experience as a whole is a traumatic event for parents (Young, Mintzer, Seacord, Meskhani and Stuber, 2003),but for purposes of this research project, although we recognize both parents are affected, I’ll refer to the process of coping in terms of the maternal caregiver in particular.
  • When a child is critically ill, a maternal caregiver faces many crisis situations that trigger a host of common reactions.Take for example what occurs at the time of diagnosis, a point when 70% of parents report experiencing their greatest stress ( . . . ) – There is:ShockDisbeliefDenialAngerGuiltLeading toLack of confidence andDecreased self-worthAnd finally grief and sorrow over the many layers of loss being incurred.
  • But what qualities of the crises are likely to foreshadow negative psychological consequences leading to Posttraumatic Stress?How do those predisposing variables impact a transplant caregiver? Answers to these questions are summed up well by Tedeschi and Calhoun (1995) in their review of the trauma research: Situations that are:Sudden and Unexpected (McCann & Pearlman, 1990) are threatening to a person’s wellbeing andIf the situation is out of the Ordinary and Unfamiliar (McCann & Pearlman, 1990) the caregiver doesn’t have the resource of prior experience to draw from.The more Uncontrollable (Davidson, Fleming & Baum, 1986) the situation, the more powerless one will perceive themselves to be andIf this is compounded by the situation being Long Lasting, Irreversible & Unchangeable (Davidson, Fleming & Baum, 1986), the caregiver may begin to feel hopeless and helpless.Additionally, if the crisis Occurs at Sensitive Time in Life Cycle (Tedeschi & Calhoun, 1995) a person’s basic identity can feel threatened, creating a psychological threat to basic security, whichMay evolve into a caregiver Blaming herself or others (Downey, Silver & Wortman, 1990; Tennen & Affleck, 1990).The bottom line is that Posttraumatic Stress might best be viewed as a NORMAL reaction to SEVERE stimuli!
  • A notable number of mothers report chronic and persistent feelings of fear, helplessness and intrusive memories suggesting the presence of Complex Trauma (Ambrosino 2002), a term used to describe the end result of Compounded Traumatic Stress.Compounded Traumatic Stress has qualities that make it especially severe as well as extreme in nature and duration.The stressors are repetitive, prolonged and often life-threatening.The harm to the victim is inflicted by a caregiver or ostensibly responsible adult and it is physically assaultive.The trauma occurs at a developmentally vulnerable time in life and is psychologically and physically dysregulating.This can severly compromise a child’s development and render them overstimulated and dysregulated.The trauma is ongoing and thus chronically compromising.that are extreme in nature and long-lasting. Let’s take a glance at these elements as they impact the pediatric patient: SLIDEThrough medical necessity, the patient who is also a child, is always a victim of complex trauma with Mom being a vicarious witness. Tragically, as an informal medical caregiver, Mom is often the perpetrator of her child’s traumatic stress as well; however, this aspect of caregiving traumatization to the maternal caregiver goes completely unaddressed in the literature.It is not surprising that many caregivers who do not meet full criteria for Post Traumatic Stress Disorder still experience many of the associated symptoms.
  • As you can see, a parent experiencing even some of these symptoms will feel challenged by the responsibilities of caring for a sick child.
  • However, highlights of a 3-year longitudinal study of psychosocial predictors of functional outcome of caregivers found that many do meet criteria for a diagnosis of PTSD (Young et al., 2003).The study also found some associated predisposing factors to PTSD:These include: Perception of Child’s Physical Health StatusAppraisal of Life Threat to ChildPerception of Intensity of Child’s TreatmentAttitude toward Healthcare Providers / ServicesLack of Mastery over Family & Social ImpactsPresence of DepressionLevel of Personal StrainLack of Social SupportNegative Financial Impact
  • Even if a caregiver weathers all of the situational stress successfully, she will be subject to layers of loss that cause endless rounds of grief and sorrow. Grief doesn’t occur in predictable cycles or stages, but studies reveal there are circumstances that can trigger it to occur, such as:1. Emergence of new medical issues2. Never ending caregiving responsibility3. Risk of complications Unpredictability of child’s illness, which equates to no predictable end to the lossUncertainty of child’s future, which allows no resolution or closure to the issues (Titelman, Psyk, 1991; Atkinson, 1994)All of which are common in the world of transplant
  • In sum, the experience of being a caregiver for a transplant child is traumatic.But let’s take a look at what is involved in fulfilling this role.
  • Transplant moms are informal medical caregivers, problem solvers, negotiators, and advocates.The tasks associated with the role are numerous and impossible to cover in this overview.But some of the most notable duties include:(1) Administrating uncomfortable and painful medical procedures to one’s own child, which can elicit fear, create internal conflict and cause grief.(2) Handling crisis level situations in an isolated and unsupported home environment.(3) Maintaining composure, emotional distance and psychological attentiveness for the sake of the child at the caregiver’s expense.(4) Shouldering the burden of responsibility for the other children in the home, often times in addition to working outside the home.(5) Navigating and advocating in public systems to obtain support resources for a compromised child .We can use my experience as an example of how this plays out:
  • Wayne is 21 years old now and miraculously still doing well with his original graft!! By society’s standards he is also an adult. However, like many young transplant patients, Wayne has other challenges combined with his a post-transplant status. Some of these include ADHD, Anxiety and cognitive delay. Thus as his mom and caregiver I have had and still have multiple roles to fulfill . . . such as being his:Informal medical caregiver at homeSpokesperson and decision maker for all medical concernsNegotiator for insurance coverageRepresentative for transition from pediatric to adult medical careAdvocate in school IEP’sAdvocate for transition from teen to adult status in the world of disability and transplantAdvocate for The Department of Rehabilitation and The Regional Center for transition to adult status Driver to every single appointment and activityRepresentative payee for SSIAnd finally his Legal ConservatorFighting for the proper resources to meet Wayne’s needs is ongoing. Some of the action I had to take in order to get a response included but were not limited to:
  • Contacting a newspaper to run a story on my insurance company who would not cover expenses for life sustaining formula for his GI feeds and supplemental nursing care so I could keep my job. The health insurance was tied to my employment!Fighting for eight months to get his case reopened with The Regional Center in 2007. They had closed it in 1995 when he was 3 years old. Paying thousands of dollars to hire psychologists to assess Wayne’s cognitive capacity when the school district failed to do so properly. Fighting with the school district to get him proper support in the classroom and protection on campus from other kids who picked on him.Hiring an attorney to represent his case in a court hearing after SSI had twice declined our application.The list goes on, but worst of all was the experience of Being viewed as a “helicopter mom” by those who didn’t understand his cognitive limitations.Interfacing with some people in these battles was not only frustrating, it was demoralizing.
  • Demoralization entails the loss of a specific psychological essence by the individual, an essence that is not necessarily encompassed in the diagnostic construct of depression (Sansone & Sansone, 2010).I experienced multiple failed attempts before I accomplished any single one of these tasks.On many occasions I felt disappointed in myself for not solving the problem more efficiently. I was used to resolving complex problems in my personal and business environments up until now!I often felt incompetent for falling short of my own expectations. Sometimes when I was feeling really worn down, I started to question my ability to cope and wanted to give up.The sad fact is that feelings of demoralization may be largely preventable. Although the situation itself can lead to such feelings, it is more often the result of repetitive, demeaning and invalidating interactions with other people!
  • In looking at the roles and responsibilities of the transplant caregiver, it is not wonder that Mothers express concern.Transplant moms I’ve interviewed thus far have ALL voiced two worries in particular:How long will my child live and What will happen if my child lives longer than I do?
  • These are legitimate concerns.Studies are revealing that adult transplant children transplanted at a younger age with early struggles are less socially mature overall, often live with parents, have few school qualifications, and are often unemployed (Brownridge & Fielding, 1991).Transplant Children who start out developmentally delayed are continuing to remain delayed (Bradford, 1991)Those who have children like Wayne with vulnerabilities in addition to the transplant express the greatest concerns.Even if the resources of SSI, the Regional Center, and the Department of Rehabilitation are attained, the funding is inadequate and the services and programs were not designed to meet the needs of a child with a kidney transplant.Because of the impersonal nature of these organizations, who will compassionately advocate for our transplant child when we are no longer around to advocate. Not all young transplant patients will have the array of challenges that Wayne does. Some will have fewer and some will have more. But all of them will have the some issues associated with the paradoxical blessing and “hidden disability” of living a post-transplant life.
  • At this point, you may be wondering if a transplant caregiver can possibly experience posttraumatic growth versus posttraumatic stress resulting in lasting positive change.You may also be asking yourself, why does it matter?
  • Well, let me ask you a question – Have any of YOU had an especially bad day in clinic? Did it involve an upset caregiver? Anymore questions?
  • I was curious about both of these questions in regard to other maternal caregivers, because I knew something pivotal took place for me in 1998 as my son endured months of invasive treatment for an infectious disease that could not be identified and was barely arrested in time to save his life. I found a silver lining that would help me through many more incidents of death defying crisis. That turning point motivated a vision for me to find a way to reach out to other transplant families in order to help them deal with transplant related trauma and find a silver lining of hope no matter what the circumstances. As a clinical psychology researcher, I discovered that my experience had been described by several terms:Posttraumatic Growth and Positive TransformationThis leads to the next question – What is this phenomenon? Well, before I give you the scientific or psychological explanations, let me share a real life example of how this unfolded for me as a mother and transplant caregiver.
  • In 1998, seven years into the transplant journey, I was faced yet again with another Wayne related crisis. Wayne had a serious intestinal infection. He was hospitalized for six months, during which time he was administered a number of antibiotics to no avail, taken off his anti-rejection meds, and finally moved to the infectious disease department and team at the hospital. As I witnessed multiple invasive procedures and watched his weight dwindle, my spirit hit an all time low. I wondered if he might not make it through this one. My family of origin expressed concern, but did not visit as they had become desensitized after so many years of” Wayne crisis,” my marriage was falling apart, and my 11yr old son was withdrawn and depressed. The beloved family cat got run over by a car. I did what I suspect many moms do. I cried, I cursed God and prayed at the same time, and I felt very lonely. As I packed Wayne’s belongings to relocate to the infectious disease floor, I saw the mom next door readying herself and her son for discharge. I suspected that her son had some sort of chronic illness and asked her if this was the case. She confirmed this to be so and asked how I knew. I told her that I could see she was a veteran hospital mom – she knew the ropes, but more telling was the absence of balloons, cards or visitors that are ordinarily seen in acute circumstances. I bid her warm wishes and internally wished I was leaving with my son too. I continued in my sleep deprived stupor to transfer our belongings to the other floor of the hospital.
  • When I returned to the room for the last of our belongings I found a surprise. A bouquet of balloons, a card, and a stuffed huggie frog for Wayne. It was from the mom who was in the room next door whose son had been discharged. I got what I asked for after all – not from my family – but from a perfect stranger . . .the gift of knowing that I wasn’t really alone. That mom understood because she had a chronically ill child like me. My despair lifted. If I could be present for another mom like this mom had been for me, I could find a meaning despite all of the suffering. I could find a greater purpose in my life than merely being a good mom for my other son if Wayne didn’t make it. His suffering might have a more far reaching purpose based on what I did with my grief. Her simple act of kindness and compassion was pivotal. I vowed in that moment to find a way to reach out to other caregivers who had medically fragile children. A simple act of human compassion from someone else who really understood my suffering inspired a positive change in my way of feeling, thinking and behaving. It eventually transformed how I identified with and lived my life as a mother, caregiver and donor of a transplant child!
  • I had experienced Posttraumatic Growth as defined by Tedeschi and Calhoun (1995) who coined the term
  • PTG is defined as apositive psychological change experienced as a result of struggle with highly challenging life circumstances.Some interchangeable terms help to capture the concept: REVIEW SLIDEAccording to Tedeschi & Calhoun (1995), PTG describes the experience of individuals whose development surpasses what was present before the struggle with the crisis.They have done more than survive in the face of trauma. They have thrived!PTG includes a perceived change that can affect cognitive, emotional and behavioral processes, unlike what is understood by the act of merely coping.Interchangeable Terms: Stress Related Growth (Park, Cohen, & Murch, 1996); Adversarial Growth (Joseph & Linley, 2005; Linley & Joseph, 2004); Perceived Benefits (McMillen & Fisher, 1998); Flourishing (Ryff & Singer, 1998); Thriving (Carver, 1998; O’Leary & Ickovics, 1995); Self Transcendence (Reed, )Coping mechanisms of positive reinterpretation (Scheier, Weintraub, & Carver, 1986); Drawing Strength from Adversity (McCrae, 1984) Transformational Coping (Aldwin, 1994; Pargament, 1996) have also been described.Resilience (Richardson, 2002);
  • Though anecdotal research underpinning the phenomenon of postive change can be traced back to the 60’s, 70’s and 80’s in the areas of life-threatening illness, disabilikty and chronic illness,Systematic evidence-based research on trauma-related positive change only began around 1991 (Tedeschi & Calhoun, 2006). In the arena of illness related trauma, the research has mainly studied adult cancer patients and their caregivers, which may or may not be generalizable to other populations. (Stanton, Bower & Low, 2006). Unfortunately, there is little to no research investigating growth among solid organ transplant populations in any age category or their caregivers (Widows, Jacobsen, Booth- Jones, & Fields, 2005).
  • Tedeschi and Calhoun (1995) organized Posttraumatic Growth into categories of:Self-PerceptionInterpersonal RelationshipsAnd Philosophy of LifeThe structure of PTG as a diagram is parsimoniously diagrammed above.
  • Tedeschi and Calhoun (1995) organized Posttraumatic Growth into categories of:Self-PerceptionInterpersonal RelationshipsAnd Philosophy of LifeThe structure of PTG as a diagram is parsimoniously diagrammed above.
  • Transformation refers to people being transformed by the experience of living with chronic illness, allowing them to move focus away from the associatedburden and suffering. It is seen as a process and an outcome.Transformation has received considerable attention as a focus of research in healthcare; however, few studies look at the context of transformation.(Dubouloz et al., 2010) constructed a conceptual framework that explains the process of personal transformation within a primary care context for people living with chronic illnesses.The Dubouloz (2010) model identifies three phases of the transformation process:Initial ResponseEmbracing the ChallengeIntegrating New Ways of BeingThere are three aspects to navigate:Progression from one phase to the otherDuration of each phaseRepetitive nature of the processAll phases of the transformation process are influenced by Social and Personal Context including:Interactions with peersInteractions with healthcare professionalsSocial SupportHealthcare SystemPerson’s willingness and/or ability
  • Transformation refers to people being transformed by the experience of living with chronic illness, allowing them to move focus away from the associatedburden and suffering. It is seen as a process and an outcome.Transformation has received considerable attention as a focus of research in healthcare; however, few studies look at the context of transformation.(Dubouloz et al., 2010) constructed a conceptual framework that explains the process of personal transformation within a primary care context for people living with chronic illnesses.The Dubouloz (2010) model identifies three phases of the transformation process:Initial ResponseEmbracing the ChallengeIntegrating New Ways of BeingThere are three aspects to navigate:Progression from one phase to the otherDuration of each phaseRepetitive nature of the processAll phases of the transformation process are influenced by Social and Personal Context including:Interactions with peersInteractions with healthcare professionalsSocial SupportHealthcare SystemPerson’s willingness and/or ability
  • 1. Pediatric Transplantation has only been in practice for about 30 years. Recipients and Caregivers are understudied.2. There is established evidence that caregivers of transplant candidates and recipients are at risk for high levels of stress. Studies are needed that will help better serve this sometimes forgotten population (Engle, 2001).3. Although caregiver stress is reported, there is a lack of study pursuant to the pediatric transplant caregiver that also experiences trauma.4. There is some research on Posttraumatic Growth in the parents of chronically ill children, but not exists on the Maternal Caregiver of a transplant child.5. There are few interventions suggested to ameliorate caregiver stress and none on how to promote Posttraumatic Growth and Transformation.
  • 1. The purpose of this study was to analyze and better understand the positive growth experiences of the mother who is the primary caregiver for her medically compromised transplant child. 2. This study expands on the existing research which reveals traumatic impact on the caregiver, while it concurrently underscores the positive growth and transformation experienced by some caregivers. Researcher hypothesizes that unaddressed Type II Trauma is a catalyst for Posttraumatic Stress and an obstacle to Posttraumatic Growth and Transformation. 3. The process models of Posttraumatic Growth and Positive Transformation reveal that a persons connection to self, others and the environment are critical to the process of growth.4. The model for transformation reveals that medical patients often experience a pivotal turning point in their adjustment. This researcher hypothesizes that she will uncover “silver lining” stories at this juncture in the caregiver’s process.5. Althoughcaregiving for a chronically ill child leaves the maternal caregiver vulnerable to posttraumatic stress, it has been shown that exponential growth and long-lasting life transformation may also occur (Hungerbuehler, Vollrath, & Landolt, 2011).
  • 1.The occurrence of solid organ transplantation in the adult and pediatric population is growing in all organ categories (OPTN data source)2. If elements that contribute to positive change can be identified , it may be possible to encourage them in caregivers. 3. As opposed to merely preventing posttraumatic stress or returning a stressed caregiver to an adequate or pre-trauma level of functioning, steps can be taken to promote long-lasting levels of change, such as those described by posttraumatic growth, self-transcendence and transformation.4. This topic is important because research findings about what supports positive growth can be synthesized with existing therapeutic interventions that simply ameliorate posttraumatic stress. 5. Understanding what promotes well-being in a caregiver and what medical providers believe contributes to optimal relations can help toward fostering optimal relations and promoting PTG in caregivers.
  • General researcherquestions pursuant to caregivers that were explored in an effort to achieve this objective included:  What are the maternal caregiver’s experiences of long-term beneficial change associated with transplantation of her child?2. What are the maternal caregiver’s experiences of connection with self, others, and the environment as a result of the transplant journey?3. What are the specific events or experiences during the transplant journey that create a turning point or catalyst for lasting positive change in the life of the pediatric maternal caregiver?
  • Basic Demographic and Situational Info:Ethnicity____________________Age of mother at time of transplant ________Number of transplant patient siblings _______Total number of transplants to date Date of TransplantAge of Child atTransplantDeceased DonorLiving DonorWho Donated?Transplant CenterPre-Transplant Dialysis?Peritoneal Dialysisor HemodialysisDid you work outside the home before the transplant? Did you work outside the home after the transplant? At the time of transplant Marital Status?Current Marital Status?First two questions limited descriptor – like newspaper article title or theme title in a book
  • The people most prominently involved in the ongoing care of the transplant child are the primary caregiver, typically the mother, and members of the post-transplant medical team. The relationship between the primary caregiver and post-transplant team represents a critical link to post-transplant success, as the caregiver mediates practically 100% of the in-home protocol for the child (Epner, Ravi, & Baile, 2011).Researcher general questions pursuant to the transplant medical team were aimed at gaining a better understanding of the transplant caregiver adjustment from the provider’s perspective.The researcher is also curious about what presents the greatest challenges for providers.In an attempt to gather this information, a questionnaire is presented to transplant medical providers. The responses will be generally reported, but not phenomenologicallyanalayzed for this study.
  • Which leads to the next set of questions: Who has experienced it? Why don’t I have it? How can I get it? When can I get it?Have the pharmaceutical companies bottled it yet? (humor)I’m sure they would if they could. I don’t know the answers to most of these questions, but I’d like to find out!I do know being a mother, transplant caregiver and donor became my “gift of life,” because without the transplant journey I may not have experienced Posttraumatic Growth and Positive Transformation at all! Thus, I believe I might be able to make a positive impact for other transplant caregivers – and so can you.
  • Even if we don’t have PTG and Positive Transformation patented yet, studies reveal that you as a medical professional can contribute to patient and caregiver adjustment in a positive way:By simply:Respecting the knowledge that parents have gained as a result of their experiences with a chronically ill child, acknowledging, partnering and fostering a sense of parental control (Paterson, Russell & Thorne 2001) – Ajesh ArticleIncluding a parent in the decision-making process, helping them feel empowered and useful (Ajesh Article)Providing useful information in an honest, direct, factual yet compassionate manner, helping parents to feel respected, acknowledged, empowered and understood (Grace 2013).Showing sensitivity toward a parent who is exhibiting grief and anxiety, especially in early disease stages, helping them to cope more effectively with feelings of powerlessness (Hodges & Parker 1987).Your power to make a difference doesn’t end here!
  • You as medical provider on a child’s transplant team you interface with the transplant caregiver and pediatric patient for many years.It maycome as a surprise for you to hear that many transplant moms view you as an EXTENDED MEMBER OF THE FAMILY! I know your internal voice is screaming . . . “oh no, not another one of THOSE relatives!” . . . But, on a serious note . . .
  • As an extended family member your inclusion is longed for and appreciated.There is no “real team” or complete transplant family without you! With your help, perhaps we can move toward understanding how more caregivers of transplant children can experience posttraumatic growth and be positively transformed by their challenges.Please join me in my curiosity about what contributes to a transplant caregiver’s Posttraumatic Growth and Transformation by:*Filling out the brief Questionnaire and signing the consent forms in your envelopes (10 mins or so!)*Mentioning the study to maternal caregivers, who can contact me directly for all the details.The worst case scenario is that the research will simply be interesting, but it is also possible we will discover a key to fostering lasting positive adjustment in caregivers.Which may after all translate into a decent day in clinic!I look forward to presenting results of the study to you sometime in September or October!

Maternal Caregivers of Transplant Children Maternal Caregivers of Transplant Children Presentation Transcript