Exploring Family Management of Childhood Brain Tumor Survivors

Janet A. Deatrick, PhD, FAANUniversity of Pennsylvania School of NursingAssociate Professor and Associate DirectorCenter for Health Disparities Research1Exploring Family Management of Childhood Brain Tumor Survivors5/20/[email protected] a years sabbatical in 2002 in which I worked with the psychosocial oncology team at The Childrens Hospital of Philadelphia, I was drawn to the families of survivors as they shared so much with the families who had children with other chronic conditions; in particular, I was drawn to the survivors of childhood brain tumorsBrain tumors are the most common type of childhood solid tumors 65% of children diagnosed these tumors survive There are now some 26,000 BT survivors in the US who are under 19 years of age (http://www.cbtrus.org/factsheet.htm) In terms of the clinical and scientific significance of this workSurvivors of bone tumor, CNS tumors, and Hodgkins disease are the 3 highest risk groups for long term morbidity (over 28 years) (Investigators recently compared 10, 397 survivors and 3,034 siblings from the Childhood Cancer Survivor Study)Cognition can be impacted with changes in overall I.Q., slower processing speed, declining short-term memory, poor attention span and impaired organizational skills. Physical squeal often require the care of multiple specialists and may include visual disturbances, hearing impairment, endocrine dysfunction, neurological deficits and changes in physical appearance. These effects, on both mind and body, greatly impact the survivors ability to develop social skills and to meet normal developmental milestones. In turn, as these survivors attempt to transition to adolescence, young adulthood, and beyond, they are often incapable of managing the complexity of their chronic physical healthcare needs and are unable to function independently in society Survival of these children, therefore, comes at a significant cost to their cognitive and social functioning, growth and development, and major organ functionUltimately, families influence the process and outcomes of their care through their ability to monitor the childrens condition, make timely decisions about consulting health care professionals, enable their childrens cooperation with care, and balance demands of cancer survivorship with other responsibilities of family life. Thus, every member of the pediatric neuro-oncology health care team must simultaneously focus on supporting child and family functioning while implementing careEven in the face of these potential vulnerabilities, brain tumor survivors and their families/caregivers have been underrepresented in research, in both pediatric and adult care

Research Team2Wendy Hobbie, MSN, CRNP CHOP PISusan Ogle, MSN, CRNPJill Ginsberg, MDMichael Fisher, MDErin K. Mullaney, MSN, CRNPKim Mooney-Doyle, MSN, CRNP5/20/[email protected] want to recognize my present research team for our ongoing research- a wonderful interdisciplinary team of colleagues

Acknowledgements3The families who participatedOncology Nursing Society and the American Brain Tumor Foundation National Institute of Nursing Research (NINR)

R01 NR08048 (Knafl)R01 NR00965 (Deatrick & Hobbie)5/20/[email protected] want to recognize my long term research partners (Kathleen Knafl and Agatha Gallo) as well as our supporters, including the families who participated in this research; ONS/ABTF who funded the research which is the focus of our presentation, as well as NIH/NINR who funded the development of the Family Management Measure (FaMM) and our ongoing research.

Goals4Short term: What does family management mean to parents of adolescent and young adults who survived brain tumors?Long-term: Derive a theoretical base for understanding families of childhood brain tumor survivors

5/20/[email protected] our research has focused on how the family integrates and handles the chronic condition in everyday life we wondered how we could extend these understandings into this population; in the long term we wanted to derive a theoretical base for interventions with families of childhood brain tumor survivorsTo meet our short term goal Today we will report the results of our study in which we sought to explore family management from the perspective of parents whose adolescent and young adult children survived brain tumorsWhat Theoretical/Conceptual Models Currently Exist To Understand These Families?5Family stress and coping Role theoryFamily adaptation and family hardinessSystems theoriesSubstantive theories developed via qualitative methods

5/20/[email protected] theoretical/ conceptual base do we have to better understand these families?Family stress and coping (e.g. Double ABCX Model)Role theoryFamily adaptation and family hardinessSystems theoriesSubstantive theories developed via qualitative methods

What Measures Currently Exist To Study These Families?6 Well established instruments exist consistent with these conceptual/ theoretical frameworks, measuring:General family processesDisease specific family management-asthma, cystic fibrosis, and diabetes

5/20/[email protected] terms of descriptive research: Standardized measures of family functioning present a mixed picture of the family life during survivorship; studies have found that family systems variables (decreased family functioning) predicted individual outcomes including PTSD and PTSS of survivors and family members. Family issues, however, are not consistently included in studies of psychological adjustment of survivors of childhood brain tumors and their families; when they are they are confined to measures of general family functioning or disease specific family management related to the cancer experience.

The Family Management Measure (FaMM) Can Help us Understand These Families7The FaMM tells us aboutThe integration of the condition in everyday lifeFamilies efforts to manage childhood illness & incorporate illness management into family lifeFamily life in the context of chronic illnessThe FaMMComplements research on family/individual functioning5/20/[email protected] propose that Family Management can fill some of these gaps FM is how the family integrates and handles the condition in everyday lifeAs such, it is focused more specifically than other frameworks that conceptualize overall family functioning or family stress and coping. The FM Framework assumes that childhood cancer shares some of the same demands as other chronic illnesses. We feel some differences may exist, however, based on the persisting beliefs of family members about the life-threatening nature of childhood cancer and the difficulty expressed by these families about putting illness in the background rather than making it a central focus of family life (Clarke-Steffen, 1997; Gonzales, Steinglass, & Reiss, 1989). Family Group of intimates living together or in close geographic proximity and functions together with strong emotional bonds and a history and a future (Fisher, et al., 1998)Parent Person who views self as assuming major responsibility for childs carePartner- Refers to a spouse or partner living in the same household

Scale# ofitemsContentParents Perceptions ofChilds Daily Life 5child & his/her everyday life (higher values more normal life despite condition)View of Condition Impact10seriousness of condition & its implications for childs & familys future (higher values-condition more serious)Family Life Difficulty 14extent to which condition makes family life more demanding (higher values-life more difficult)Condition Management Effort 4the time & work needed to manage the illness (higher values-greater work)Condition Management Ability 12competence to take care of the childs condition (higher values-more capable)Parental Mutuality (completed by partnered parents only)

8support, shared views, & satisfaction with how couple works together to manage condition (higher values-greater satisfaction)8

nursing.unc.edu/research/famm/5/20/[email protected] is the layout of the FaMM (Refer to the WWW site and JPP manuscript)Results of the FaMM project: A combination of exploratory and confirmatory factor analysis methods was used to identify 5 summated scales measuring the dimensions of difficulty, manageability, concern, effort, and child identity. A sixth scale, mutuality, was identified for partnered respondents. Internal consistency reliability for the scales ranged from .72 to .90 when accounting for intra-parental correlations. Test-retest reliability, based on responses from 65 parents retested within 2-4 weeks, ranged from .75 to .94. Construct validity was supported by significant correlations of weak to moderate strength between each of the scales and each of the related measures, with strength and direction of relationships as expected. Family functioning, child adaptation, and child functional status were positively associated with more normal child identity, manageability, and mutuality and negatively associated with more concern, difficulty, and effort. Correlations with social desirability were non-significant for all but the mutuality scale. The analysis supports the reliability and validity of the FaMMHere are the number of items and the content of each scale as shown on your handout along with our WWW site along with the total number of items53 items for partnered parents and 45 items for non-partnered parents5 summated scales measure: child identity, concern, difficulty, effort, & manageability6th summed scale measures mutuality for partnered respondentsResults of the FaMM project: Refer to handoutA combination of exploratory and confirmatory factor analysis methods was used to identify 5 summated scales measuring the dimensions of difficulty, manageability, concern, effort, and child identity. A sixth scale, mutuality, was identified for partnered respondents. Internal consistency reliability for the scales ranged from .72 to .90 when accounting for intra-parental correlations. Test-retest reliability, based on responses from 65 parents retested within 2-4 weeks, ranged from .75 to .94. Construct validity was supported by significant correlations of weak to moderate strength between each of the scales and each of the related measures, with strength and direction of relationships as expected. Family functioning, child adaptation, and child functional status were positively associated with more normal child identity, manageability, and mutuality and negatively associated with more concern, difficulty, and effort. Correlations with social desirability were non-significant for all but the mutuality scale. The analysis supports the reliability and validity of the FaMM

Families Management Clusters9Hi Effort (Demand)Hi Ability (Competence)

Hi Effort (Demand)Low Ability (Competence)Low Effort (Demand)Hi Ability (Competence)Low Effort (Demand)Low Ability (Competence)We were particularly interested in these 2 areas; effort/demand and ability/competence5/20/[email protected] interviews (see: Knafl, Deatrick, Gallo, Holcombe, Bakitas, Dixon, & Grey, 2007)Interviewed 22 parents Discovered what family management means to themCase studiesSelected 2 families with contrasting family management to illustrate research and clinical potential of family management5/20/[email protected]: Professional expert interviews:The expert survey necessitated that 14 Cancer Survivorship and Neuro-Oncology APNs assess the relevance and clarity of each item on a previous iteration of the FaMM and then rewrite the item as they deemed necessary, along with providing any feedback about phenomena or wording (qualitative). Through statistical analysis, we found that the APNs rated a majority of the items as relevant (96%) and clear (95%)

The methods for the study being reported today included Cognitive interviews: In person or telephone interviews were conducted with each parent to assess the meaning, interpretation, relevance, and clarity of FaMM items; FaMM items used as an interview guide. Transcribed data were entered into a data base, parents interpretations were summarized descriptively and problems with the items were reviewed, including limited applicability; unclear reference; unclear perspective; and problems with wording or tone; Two case studies: were selected by the research team from the aforementioned interviews to illustrate our findings; two cases were selected based on the comparability of their clinical context and the contrastability of their family managementThe family and the survivors will both be described; then items from the FaMM will be used as anchors to further describe first one family and then the otherFirst: a family that illustrates one that is Thriving: more manageable, less difficulty and effort-Tims familySecond: a family that illustrates one that is Enduring: less manageable, more difficulty and effort-Allison's familyAgain remember our purpose: To explore family management from the perspective of parents whose adolescents and young adult children survived brain tumorsParent Sample for Cognitive Interviews (n=22)11Respondents:Mothers: 77% (17/22)Fathers: 23% (5/22)

Demographics:Married: 86% (19/22)Biological parent of survivor: 100% (22/22)Age 31-50 years: 55% (12/22)Caucasian: 82% (18/22); African American: 14% (3/22); Asian: 5% (1/22)Employed FT: 64% (14/22) College educated: 45% (10/22)Parent with serious illness: Mothers: 23% (5/22)Fathers: 0% (0/22)

5/20/[email protected] 22 parents, we found that the majority of the respondents were female (77.3% or 17/22) and Caucasian (82%). The majority of the parental respondents worked full time (63.6 % or 14/22) and approximately 32% did not work outside the home. In the majority of homes, a spouse is present and participates in the care of the brain tumor survivor (86.4% or 19/22 and 81.8% or 18/22 respectively). Of note is the 5 of the 22 mothers reported that they had a serious illness. Such illnesses included diabetes mellitus type 1 and 11 and fibromyalgia

Survivor Sample for Cognitive Interviews (n=22)12Male: 73% (16/22)Female: 27% (6/22)Mean age:19.3 yearsSchool:Grade school: 23% (5/22)High school: 9% (2/22)Post-high school: 64% (14/22)Parental rating of survivor health status:Good or excellent: 91% (20/22)Presence of additional chronic illness: 91% (20/22)

5/20/[email protected] of our sample is comprised of survivors of PNET/Medublastoma [50% (11/22)] and of astrocytomas [5/22 (22.7%)]. (dont read this detail-Other diagnoses included choroid plexus carcinoma, term cell tumor, oligodendroglioma, pinealblastoma, and optic glioma. Most (59% or 13/22) of the survivors underwent surgery, radiation, and chemotherapy. (dont say this---A smaller amount (22.7% or 5/22) had surgery and radiation. The rest of the survivors had either surgery or chemotherapy or radiation.) Most survivors did not have any medical conditions prior to the cancer diagnosis (81.8% or 18/22). Conversely, the majority of parents reported that their child did have medical effects from their cancer therapy (90.9% or 20/22). The impact of the cancer therapy was further delineated into 3 categories: cognitive/academic, physical, and social functioning. 54.5% of the respondents reported that their childs cognitive/academic functioning was highly affected by the cancer therapy (vs. 13.6% who had diminished cognitive/academic functioning prior to the cancer diagnosis). 16 of the 22 respondents reported that their survivors did have learning problems at present. Approximately 45% of caregivers (10/22) reported that their survivors physical functioning was highly impacted by the cancer therapy (vs. 81.8% of respondents who reported no physical limitations on their survivor prior to therapy). The impact of cancer therapy on the survivors social functioning was more evenly distributed. 5 of the 22 (22.7%) respondents reported no impact, 18.2% (4/22) reported a low impact, 22.7% reported a moderate impact, and 36.4% reported a high impact. 18/22 (81.8%) denied prior issues impacting their social functioning prior to cancer. Despite these issues, 20/22 respondents rated the survivors health as good or excellent (68.2% and 22.7% respectively). In addition, 50% were working in several capacities but the other 50% are either in School or Home. All live @ home with parent(s).When queried about mental health services, 6/22 said at least one family member used such services; 4 noted the survivor used such services and 4 noted other family member used such services. Surprisingly 16/22 reported that no one in the immediate family ever used mental health services.

Family Management ScalesManifestations in Families of Brain Tumor SurvivorsChilds Daily Life child & his/her everyday life (higher values more normal life despite condition)Getting to know childs abilities after treatment and helping the child get to know himself/herselfView of Condition Impact-seriousness of condition & its implications for childs & familys future (higher values-condition more serious)Implications of brain tumor for future of child and family Family Life Difficulty- extent to which condition makes family life more demanding (higher values-life more difficult)Ability for family to balance their focus on ongoing family life with the needs of the survivorCondition Management Effort-the time & work needed to manage the illness (higher values-greater work)Amount of time and work needed to manage then during diagnosis and now during survivorshipCondition Management Ability competence to take care of the childs condition (higher values-more capable)Overall ability to handle needs of the survivor over the long haul within the context of ongoing lossParental Mutuality (completed by partnered parents only) -support, shared views, & satisfaction with how couple works together to manage condition (higher values-greater satisfaction)Relationships, shared views, mutual support; flexibility135/20/[email protected] slide gives you more concrete descriptions of scale within our population

The six components or factors of the FaMM describe and measure parents perceptions of managing their childrens conditions and how they incorporate the condition into everyday family life. The FaMM can be used to identify key components of family management from the point of view of the parents.

Additional Finding14Carefully framing empirical method, research questions, and measures to include ideas of participantsIncluded measures of Life Threat in current researchModified directions for the FaMMAcknowledged the importance of their effort during diagnosis and treatment, but stress the importance of reporting their present effort for this instrumentimportance of carefully framing our empirical model, research questions, and measures to include ideas expressed by these participants. For instance, in the current study a measure of life threat (Assessment of Life Threat and Treatment Intensity Questionnaire) is included to accurately measure the presence and intensity of said perceptions that were important in defining the view of the condition. Finally, directions to the FaMM were modified (i.e. acknowledge the importance of their effort during diagnosis and treatment, but stress the importance of reporting their present effort for this instrument) based on the interviews and information obtained.

5/20/[email protected] Survivors and Their Families: Two Stories15

5/20/[email protected] I am going to tell you about two survivors (Tim and Alison) and their families who appear clinically to look alike but whose family management differs in important ways; I do this to illustrate the importance of research to better understand the nuisances behind these differences; I am not going to talk about the families who are having a very difficult time; that is the subject of another presentation!

Two SurvivorsTL, a 23 year old maleDiagnosis: medulloblastoma at age 8 years.Treatment: surgery chemo & radiationComplications during therapyOff-therapy issues16AZ, a 22 year old femaleDiagnosis:Hypothalamic astrocytoma at age 14 years.Treatment consisted of surgery, chemo, & radiation Complications during therapyOff-therapy issues5/20/[email protected] and AlisonTL: after being diagnosed with medulloblastoma at 8 years of age and was treated with all three modalities: surgery (near total resection), chemo (cisplatin, CCNU, & vincristine), & radiation (3600 cGy [whole brain and spine] + 5580 cGy boost to the PF); he had the following complications during therapy: post-operative ventriculitis, and post-operative cerebellar artery infarct; post treatment issues include hypoplasia of craniospinal axis, alopecia, hypothyroidism, growth hormone deficiency, seizures, scoliosis, cataracts, diabetes, learning disabilities, and Herpes Simplex Virus encephalitis (HSV); is currently followed by CSP, endocrinology, neurology, and ophthalmology; A.Z. After being diagnosed with a thalamic hypothalamic anaplastic astrocytoma at 14 years of age was treated with all three modalities: surgery (near total resection & ventriculostomy), chemo (procarbazine, CCNU, & vincristine), & radiation (4140 cGy focal & total of 5940 cGy with cone downs) so got more focal treatment than TL; Complications during treatment included post-operative DI & adrenal insufficiency, transient language & memory loss, chemo reduction due to depressed counts [6 cycles rather than 8]; Off-therapy issues include: hypothyroidism, GH deficiency, sensorineural hearing loss, migraines, learning disabilities, alopecia/hypoplasia of craniospinal axis; she is currently followed by endocrinology, nutrition, and psychology, and CSP; Two Families17Mr. & Mrs. LCaucasianSpousal roles & different coping stylesNo chronic /acute illnesses in familySiblingsCancer experience in familyRole of the survivor in familyCaregivers strugglesMr. & Mrs. ZHispanicSpousal roles & different coping stylesMom is a diabetic: no other issuesSiblingsCancer experience in familyRole of survivor in familyCaregivers struggles5/20/[email protected] family: Tims family appears to be a cohesive and supportive family who rolls with the punches. Mother and father have a complemental relationship in that they manage differently but have similar views about the illness. For instance, during TLs illness, his mother was extremely anxious and attentive to details and his father managed more long term goals and would step in when his wifes distress escalated. When pressed, Tims mother is able to redirect her concerns to long-term goals (e.g. independence); for instance, she recently was able to agree with her husband that Tim return to college after an episode of encephalitis and coma for 3 days. Tim lets Mom hover and do things for him; Tim seen as more fragile than other sibling. Not working yet since just about to finish college.. Grandparents are also involved; Maternal grandmother died of cancer as TL became a survivor There overall belief is that just have to keep working at a problem until it gets solved or changes Tims older brother is healthy lives outside the home. Allisons family: Family lives paycheck to paycheckAlthough very competent and appearing in control, Allisons mom perceives that she carries burdenParents have more discrepant views of Allisons situation in that Allison mother sees her daughter as more fragile than her husband; Allisons father thinks that his wife coddles Allison too much; they struggle with worry and promoting independence; One nephew survived leukemia; distant cousin died of a brain tumor One brother is 19 year old college sophomoreAllison has worked at a grocery store for 6 years; store will not grant her FT employment; graduated from community collegeMom oversees medication mgmt and appointment attendance; mom pushed for OVR counselor; Moms goal-help survivor function independentlyAZs mom feels that the safety net is not there and that if I dont do it, who will? Mom sees the experience as a lifetime deal and struggles with being able to really do this; keep wondering when things will get easierdont see light at the end of the tunnelAZs mom has sense that her husband and his extended family dont get seriousness of AZs situation and that her concerns are not taken seriously.AZs mother has the sense that AZs father doesnt get the seriousness of AZs situation and that her concerns are not taken seriously by him

Compare and Contrast their Stories18Survivors Daily LifeView of Condition ImpactFamily Life DifficultyCondition Management EffortCondition Management AbilityParental MutualityStory will be structured around the FaMM Scales5/20/[email protected] Management - Tims Family19Survivors Daily Life: even though Tims normal has changed nothing of any consequence is different for him; there are things he cant do but he compensates and does other things:View of Condition Impact: his cancer is no longer the focus of family life, it used to be the first thing that we thought about every dayFamily Life Difficulty: his cancer doesnt get in the way of our relationships; however as he attempts to assert his independence we struggle like any other family. Tims Story Continues20Condition Management Effort: it doesnt take as much time as active treatment, but, there are still scary times; last year he got encephalitis and it was a reminder of how fragile his life still isa week or so later he returned to collegethat was hard but the right thing to doCondition Management Ability: the doctors and nurses know what is best about some things but we understand what he has been through and have ideas about how to best help himParental Mutuality: we are pretty much in sync although I am more protective then his father; we are able to set aside our differences when he has a problem

Family Management-Allisons Family21Survivors Daily Life: her normal has changed since she had the brain tumor in ways that are consequential for her and for us; for instance, she is 21 years old and doesnt go out with friends and doesnt have a boyfriendView of Condition Impact: a day doesnt go by that Allisons cancer isnt a top concern to us in terms of worrying about late effects or waiting for the cancer to recur Family Life Difficulty: Allisons cancer has put a strain on family relationships; it is scary for me as her mother and a lot of responsibility that takes me away from care of my other children5/20/[email protected] Story Continues22Condition Management Effort: Allisons disabilities create a lot of work and we feel like we are on a rollercoasterCondition Management Ability: I want to help her become more independent but dont know how to do so; I feel that everything falls back on me to do and I wish Allison could do more for herselfParental Mutuality: my husband and I dont agree on the seriousness of Allisons situation; I feel that my husband doesnt listen to my concerns and my husband feels that I worry too much about her

Perceptions of ParentsTimAllisonSurvivors Daily LifeMore normalLess normalView of Condition ImpactLess seriousMore seriousFamily Life DifficultyNot particularly difficult; Doesnt interfereMore difficultCondition Management EffortLess effort now (low effort)More effort (High effort)Condition Management AbilityHigh AbilityModerate AbilityParental MutualityHigh satisfaction (high mutuality)Low satisfaction (low mutuality)235/20/[email protected] parents generally supported the same interpretations of family management as did parents of children with chronic conditions. The nature of their caregiving work differed, however, in the examples and descriptions used to communicate their ideas. In particular, their interpretations are imbued with descriptions of loss and fears about the future.

This slide gives you more concrete descriptions of scales for each family and scale/component of the FaMM with emphasis on effort and ability that I feel relate most closely to caregivingFamily Management Clusters in Our Current Research24Hi Effort (Demand)Hi Ability (Competence)

Hi Effort (Demand)Low Ability (Competence)Low Effort (Demand)Hi Ability (Competence)Low Effort (Demand)Low Ability (Competence)5/20/[email protected] these are the ways that we are grouping the families in our current research

Parents may perceive that they are competent (Condition Management Ability) under the conditions of needing to expend a great deal of effort or relatively little effort (Condition Management Effort). Both can be of potential concern to the clinician. Parents who see themselves as competent and are expending a great deal of effort may experience (undetected) burden or parents who see themselves as competent and not expending much effort might experience an unexpected crisis that dramatically increases effort. Parents who do not see themselves as competent either when they are or when they are not expending a great deal of effort can also be of concern to the clinician. Parents who do not see themselves as competent and not expending much effort, may find it difficult to identify actual needs of their children. Parents who do not see themselves as competent but who are expending a great deal of effort are probably of greatest concern to the clinician in terms of poor child and family outcomes. Interventions tailored to these areas family management will potentially be more effective than interventions created with a one size fits all philosophy. Discussion: Practice and Research Implications25Condition management effort and condition management ability are clearly important Parents of children with chronic conditionsRecent FaMM study (R01 NR08048 (Knafl)Parents of brain tumor survivorsThis study (Oncology Nursing Society and the American Brain Tumor Foundation Deatrick & Hobbie])Current study (National Institute of Nursing Research (NINR); R01 NR00965 [Deatrick & Hobbie])

5/20/[email protected] research reported in this manuscript provided both professional and parental input into the design and implementation of present research regarding family caregiving (NIH/NINR (R01 NR009651-01A1). From this study the interdisciplinary team learned about the importance of carefully framing our empirical model, research questions, and measures to include ideas expressed by these participants. For instance, in the current study a measure of life threat (Assessment of Life Threat and Treatment Intensity Questionnaire) is included to accurately measure the presence and intensity of said perceptions that were important in defining the view of the condition. Finally, directions to the FaMM were modified (i.e. acknowledge the importance of their effort during diagnosis and treatment, but stress the importance of reporting their present effort for this instrument) based on the interviews and information obtained.

The mixed methods study based on a heuristic model, Perceived Competence for Caregivers of Brain Tumor Survivors. condition management effort and condition management ability are central concernsQuantitative data will be gathered regarding perceived caregiving demands, psychosocial functioning of the survivor and caregiver, physical-related functioning of the survivor, and household functioning from 196 caregivers and their adolescent and young adult survivors (as appropriate) of childhood brain tumors All caregivers meeting these criteria will be screened for inclusion in the study: caregivers who are mothers will be recruited if their adolescent and young adult survivors are 5 or more years from diagnosis; 2 or more years from discontinuation of therapy; and, between the ages of 14 and 30 years. Qualitative data will then be gathered from a purposeful, criterion based sample of at least 28-40 caregivers from the quantitative phase of the study based on their scores on measures of caregiver competency and caregiver demands. This Model can then be used as the basis to meet the long-term goal of developing theory based interventions to enhance the perceived caregiver competence of mothers who are caregivers for children with brain tumors. Nursing and health care providers are concerned about functioning of caregivers as well as the health of long-term survivors of cancer because caregivers cannot be effective in their caregiving roles and assist the survivor with their needs without feeling competent as caregivers.FaMMDeveloping styles through cluster analysis to identify a typology of family management styles to increase clinical and research applicability

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5/20/[email protected]://caregiverproject.securespsites.com/27Visit our WWW site