Showing papers in "Families, Systems, & Health in 2009"
TL;DR: Frequency of NBGM was positively associated with basal-bolus regimen, longer illness duration, and increased parent-reported anxiety and parenting stress, suggesting that parents' nighttime caregiving practices and resulting sleep disruption should be routinely addressed in clinical practice.
Abstract: Parents of young children with Type 1 diabetes describe daily management as relentless. Nighttime caregiving, including nocturnal blood glucose monitoring (NBGM), occurs and may increase parents' anxiety and stress. The goal of this study was to examine the frequency of NBGM among parents of young children with Type 1 diabetes, and to identify children's illness characteristics and parents' fear of hypoglycemia, anxiety, and parenting stress associated with nighttime monitoring. Parents (N = 71) of children with Type 1 diabetes ages 2 to 6 completed questionnaires to assess frequency of NBGM, illness characteristics and health outcomes, and parent concern. Approximately one third of parents reported regularly monitoring their child's blood glucose level after their child was asleep. Frequency of NBGM was positively associated with basal-bolus regimen, longer illness duration, and increased parent-reported anxiety and parenting stress (p < .05). NBGM is prevalent among parents of young children with Type 1 diabetes, suggesting that parents' nighttime caregiving practices and resulting sleep disruption should be routinely addressed in clinical practice. Further investigations of NBGM, child health outcomes, and parent quality of life are warranted.
123 citations
TL;DR: It is suggested that Agreement about sharing of diabetes responsibilities may be an important target for family-based interventions aiming to optimize glycemic control in preteen youth.
Abstract: To identify aspects of family behavior associated with glycemic control in youth with type 1 diabetes mellitus during the transition to adolescence, the authors studied 121 9- to 14-year-olds (M = 12.1 yrs) and their parents, who completed the Diabetes Family Conflict Scale (DFCS) and the Diabetes Family Responsibility Questionnaire (DFRQ). From the DFRQ, the authors derived 2 dyadic variables, frequency of agreement (exact parent and child concurrence about who was responsible for a task) and frequency of discordance (opposite parent and child reports about responsibility). The authors divided the cohort into Younger (n = 57, M = 10.6 yrs) and Older (n = 64, M = 13.5 yrs) groups. Family conflict was significantly related to glycemic control in the entire cohort and in both the Younger and Older groups. However, only in the Younger group was Agreement related to glycemic control, with higher Agreement associated with better glycemic control. Findings suggest that Agreement about sharing of diabetes responsibilities may be an important target for family-based interventions aiming to optimize glycemic control in preteen youth.
122 citations
TL;DR: A blueprint for patient-centered medical home must address patient complexity by promoting the interplay of usual care for conditions and individualized attention to patient-specific sources of complexity-across whatever diseases and conditions the patient may have.
Abstract: Primary care is increasingly geared toward standardized care and decision-making for common chronic conditions, combinations of medical and mental health conditions, and the behavioral aspects of care for those conditions. Yet even with well-integrated team-based care for health conditions in place, some patients do not engage or respond as well as clinicians would wish or predict. This troubles patients and clinicians alike and is often chalked up informally to "patient complexity." Indeed, every clinician has encountered complex patients and reacted with "Oh my gosh"-but not necessarily with a patterned vocabulary for exactly how the patient is complex and what to do about it. Based on work in the Netherlands, patient complexity is defined here as interference with standard care and decision-making by symptom severity or impairments, diagnostic uncertainty, difficulty engaging care, lack of social safety or participation, disorganization of care, and difficult patient-clinician relationships. A blueprint for patient-centered medical home must address patient complexity by promoting the interplay of usual care for conditions and individualized attention to patient-specific sources of complexity-across whatever diseases and conditions the patient may have.
110 citations
TL;DR: It is suggested that clinicians working with couples who have recently had a child evaluate the extent of sleep disturbance in the family and educate couples regarding the mood and cognitive changes that co-occur with sleep loss and that future research into the transition to parenthood assess level of sleep loss.
Abstract: Despite the joy surrounding the birth of a child, numerous studies have documented a robust decline in marital satisfaction across the transition to parenthood. Various hypotheses, each supported by empirical evidence, have sought to explain this decline. This review considers the additional role of sleep loss in the postpartum decline in marital satisfaction. The authors begin by highlighting the problem of parental sleep disruption in a child's 1st year of life and then outline findings related to the affective and cognitive consequences of sleep deprivation and chronic sleep restriction. The demands brought on by the transition to parenthood are reviewed, and the ways in which the consequences of sleep disruption further exacerbate these stresses are considered. The authors suggest that clinicians working with couples who have recently had a child evaluate the extent of sleep disturbance in the family and educate couples regarding the mood and cognitive changes that co-occur with sleep loss. The authors further suggest that future research into the transition to parenthood assess level of sleep loss and that research into the consequences of sleep loss aim to identify individuals particularly vulnerable to mood and cognition changes.
92 citations
TL;DR: Qualitative data analysis revealed dominant themes across subject areas and implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.
Abstract: When children have special health care needs, parents assume the roles of care coordinator, medical expert, and systems advocate as well as their typical parenting roles. They face many challenges in managing their child's chronic condition in the context of everyday life. Health care providers are uniquely positioned to assist parents in meeting those challenges and to promote parent competency and confidence in their child's care. The data for this analysis were collected during classes for parents of children with chronic conditions who took part in a randomized controlled study of a curriculum's effectiveness. During facilitated discussions, parents discussed challenges they faced and generated strategies they found helpful. Qualitative data analysis revealed dominant themes across subject areas. Challenges included social isolation, strained relationships and ongoing frustrations with health care and educational systems. Helpful strategies focused on being prepared, connecting with peers, becoming an advocate, developing partnerships and caring for one's self. Implications for health care providers include: understanding common challenges parents face; promoting parent-to-parent connections; and building partnerships with parents and their children with special needs.
91 citations
TL;DR: These data suggest ways to enhance collaborative decision-making interactions between children with a chronic illness and their parents, as well as several areas for future quantitative research.
Abstract: Parent-child collaborative decision making (CDM) is a potentially important precursor to full decision-making independence and may be particularly significant for the management of childhood chronic illnesses. The primary aim of this qualitative study was to explore the concept of CDM from the perspective of children and parents. Children (ages 8-19 years) with asthma, type 1 diabetes, or cystic fibrosis and parents of children with these illnesses participated in focus groups and individual interviews. Participants described various ways they collaborate with one another (e.g., asking for the other's opinion; providing information). Participants viewed collaboration as beneficial, regardless of who ultimately makes the decision. Several factors emerged as potential predictors of CDM, including parent/family factors (e.g., parental time; parent-child conflict), child factors (e.g., maturity; emotional/behavioral functioning), and decision/situation factors (e.g., seriousness of the decision; extent to which the child is experiencing symptoms). These data suggest ways to enhance collaborative decision-making interactions between children with a chronic illness and their parents, as well as several areas for future quantitative research.
87 citations
TL;DR: Results of multiple regression show that fathers' pediatric parenting stress is positively associated with state anxiety and mother-reported difficult child behavior, which suggests that fathers may experience parenting stress differently than mothers, and that their experiences may have implications not only for their own level of anxiety, but also for their children's behavior.
Abstract: Although fathers’ stress has been shown to have important implications for children’s health and well-being, few studies of children with type 1 diabetes have considered paternal parenting stress. The current study contributes to the literature by exploring correlates of fathers’ pediatric parenting stress in a sample of young children with type 1 diabetes. Forty-three fathers of children 2–6 years old with type 1 diabetes completed self-report questionnaires examining pediatric parenting stress, child behavior, participation in diabetes management tasks, and parental psychological resources. Results of multiple regression show that fathers’ pediatric parenting stress is positively associated with state anxiety and mother-reported difficult child behavior. These findings suggest that fathers may experience parenting stress differently than mothers, and that their experiences may have implications not only for their own level of anxiety, but also for their children’s behavior.
86 citations
TL;DR: The authors examine the reorganization of family life after cancer diagnosis by reporting findings from a qualitative study of families with young children dealing with a parent's cancer, focusing specifically on parents' self-reports of how their families developed and experienced new routines and rituals while one parent underwent cancer treatment.
Abstract: A growing literature has drawn attention to the psychosocial impact of cancer on families with young children. However, to help families develop adaptive responses to chronic illness, recent scholarship has begun to advocate a shift in orientation from a deficit to a strengths perspective. In this article, the authors examine the reorganization of family life after cancer diagnosis by reporting findings from a qualitative study of families with young children (ages 2-9) dealing with a parent's cancer. The authors focus specifically on parents' self-reports of how their families developed and experienced new routines and rituals while one parent underwent cancer treatment. Despite significant upheaval in family life, the families in this study found ways to stabilize routines and maintain a sense of normalcy. Although cancer compels disruptions to existing routines and rituals, families demonstrated creative resilience in their capacity to incorporate cancer care into the formation of new family traditions, habits, and practices. By considering how families manage cancer as a joint endeavor, the authors hope to illuminate the ways in which cancer can bring families together as well as pull them apart.
77 citations
TL;DR: The researchers conducted 10 focus groups across rural Nebraska with PCPs and patients they had treated for depression and found that behavioral telehealth is a reasonable solution to the access-to-care problem.
Abstract: Due to a shortage of mental health professionals (MHPs) in rural areas, primary care physicians (PCP) are often the first, and in many cases, the only providers of depression treatment for rural individuals. This study was an investigation of the acceptability of behavioral telehealth to PCPs and patients with depression as a way of making mental health treatments more accessible to rural patients. The researchers conducted 10 focus groups across rural Nebraska with PCPs and patients they had treated for depression. A qualitative multiple-case study approach was used to analyze the transcriptions. The participants felt that behavioral telehealth is a reasonable solution to the access-to-care problem. They expressed concern that professional and therapeutic relationships would be difficult to maintain at a distance and they provided suggestions for how to preserve these relationships when using technology to deliver treatment such as focusing on fostering collaborative relationships between MHPs and PCPs. It is essential for MHPs and PCPs to develop and maintain a collaborative working relationship that will facilitate frequent communication.
58 citations
TL;DR: Future research should examine ways to identify factors that can help affected children experience posttraumatic growth while minimizing the adverse consequences of having a parent with cancer.
Abstract: This study examined the long-term impact of parental cancer during childhood. Nineteen female and 8 male adults who had a parent with terminal or nonterminal cancer during childhood participated in face-to-face interviews during which they discussed how their parent's cancer affected their lives. Their interview responses were transcribed and analyzed using a constant comparative method of analysis. Posttraumatic growth experiences were reported by 44% of participants, and 59% reported adverse consequences. Future research should examine ways to identify factors that can help affected children experience posttraumatic growth while minimizing the adverse consequences of having a parent with cancer.
55 citations
TL;DR: Fatigue explained additional variance in predicting monitoring for all three groups of mothers, and was also a significant predictor of parenting daily hassles for both well mothers and mothers with RA, but not for mothers with MS.
Abstract: For women with an autoimmune illness, fatigue can be a debilitating symptom that impacts many aspects of their life. There is scant research on maternal fatigue and its impact on the caregiving environment for either well women or women with chronic illnesses. The objective of this study was to examine the role maternal fatigue played in the caregiving environment, specifically in the mother's experience of the daily hassles of parenting, the discipline style she employed, and how she monitored her child's whereabouts. Two-hundred sixty-two mothers participated in this study: 103 mothers with multiple sclerosis (MS), 68 mothers with rheumatoid arthritis (RA), and a comparison group of 91 well mothers. Mothers completed questionnaires assessing their self-reported levels of fatigue, depression, quality and quantity of sleep, parenting daily hassles, discipline styles, and monitoring. After sleep, depression, and number of children were controlled for, fatigue explained additional variance in predicting monitoring for all three groups of mothers. Fatigue was also a significant predictor of parenting daily hassles for both well mothers and mothers with RA, but not for mothers with MS. For mothers with MS, it was the covariates (i.e., the number of children in the family and sleep quality and quantity) that were predictive of parenting daily hassles. Several explanations for mothers with MS not being as influenced by fatigue are discussed.
TL;DR: Findings highlight multi-level opportunities to intervene and support siblings in SB and explain a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties.
Abstract: The intensive health management activities associated with spina bifida (SB) often command a pervasive presence in the lives of families and may place some members at risk for psychosocial difficulties. However, research on the risk and protective factors associated with sibling adjustment is limited. Anchored upon a social-ecological theoretical framework, the purpose of this cross-sectional study was to explore the relationships between select individual, family, and peer factors and sibling adjustment. A convenience sample of 224 adolescent siblings and parents of youths with SB responded to anonymous mailed surveys. Siblings completed measures of attitude toward spina bifida, family satisfaction, warmth and conflict in the sibling relationship, peer support, and three dimensions of adjustment—self-concept, prosocial behavior, and behavior problems. Parents provided SB clinical data and family demographics. The individual, family, and peer factors explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties, with R 2 ranging from .27 to .57. Differing patterns of the relationships between the ecological factors and sibling adjustment emerged. Findings highlight multi-level opportunities to intervene and support siblings. Minimizing threats and bolstering protective influences on sibling adjustment is an essential component of family-centered services in SB.
TL;DR: The authors recommend the use of narrative methods to integrate multiple or competing perspectives into a comprehensive story of the illness experience, accommodate historically based illness narratives to modern technological advances that enable novel trajectories, and identify pathways to sustained physical and mental health through enhanced medical decision making.
Abstract: Family narratives of genetic disease address multigenerational legacies of illness, guide expectations about future diagnoses and anticipated losses, and promote continuity and coherence. Yet contemporary families with histories of genetic disease face the challenge of integrating long-standing family illness narratives with technological advances in the detection and treatment of the identified disease. The authors recommend the use of narrative methods to (a) integrate multiple or competing perspectives into a comprehensive story of the illness experience, (b) accommodate historically based illness narratives to modern technological advances that enable novel trajectories, and (c) identify pathways to sustained physical and mental health through enhanced medical decision making. A case example illustrates the use of a medical genogram to track patterns of illness expression and narrative construction over multiple generations, and implications for family therapy and research are discussed.
TL;DR: The family systems perspective is used to synthesize existing studies on the 3 components of Olson's (2000) Circumplex Model-family cohesion, flexibility, and communication-as they relate to family adaptation to cancer; and to extend the discussion to the cultural influences on these components.
Abstract: This paper uses the family systems perspective to synthesize existing studies on the 3 components of Olson's (2000) Circumplex Model-family cohesion, flexibility, and communication-as they relate to family adaptation to cancer; and to extend the discussion to the cultural influences on these components. Family systems theory was found to be a useful framework for understanding the variance of positive and negative family adaptation in the survivorship of childhood cancer and the cultural impact on the family level variables.
TL;DR: In this article, the authors provide an in-depth description of primary care providers' attitudes and perceptions of adolescent behavioral health care across a diversity of different primary care settings (i.e., Federally Qualified Health Center [FQHC], FQHC-Look Alike, school-based, military) using sixteen focus groups at five primary care clinics.
Abstract: Several major policy reports describe the central role of primary care in improving the delivery of behavioral health care services to children and adolescents Although primary care providers are uniquely positioned to provide these services, numerous obstacles hinder the integration of these services, including time, clinic management and organization issues, training, and resources Although many of these obstacles have been described in the literature, few studies have investigated these issues from the first-person perspective of front-line providers The purpose of this study, therefore, is to provide an in-depth description of primary care providers' attitudes and perceptions of adolescent behavioral health care across a diversity of primary care settings (ie, Federally Qualified Health Center [FQHC], FQHC-Look Alike, school-based, military) Sixteen focus groups were conducted at 5 primary care clinics Thematic analysis was used to analyze the focus group data Obstacles to integration are presented as well as strategies to overcome these challenges, using training and education, working groups, and community collaboratives
TL;DR: Roles of the therapeutic team are incorporated along with a case example highlighting the bio-psychosocial-spiritual model in action and sustainability, challenges, and strengths are included to facilitate a realistic appraisal of the program.
Abstract: The research on diabetes has shown the need to move from a traditional medical model to a patient-team orientation. This has led to a number of collaborative programs targeting the patient and family's comprehensive needs. This paper details one collaborative care program for underserved patients with Type-2 diabetes set in rural, eastern North Carolina. Roles of the therapeutic team are incorporated along with a case example highlighting the bio-psychosocial-spiritual model in action. Sustainability, challenges, and strengths are included to facilitate a realistic appraisal of the program.
TL;DR: The finding that children who had only partial information about their parents' illness presented more problems, illustrates the importance of "how, what, and how much" of information is communicated to children.
Abstract: This study investigates the relation of communication around parental multiple sclerosis (MS) to family dysfunction and mental health problems of the children in Greek families. Fifty-six families with a parent with MS were studied regarding emotional well-being of children, parental depression, family functioning, and illness' related impairment, correlated to the amount of information about parental illness provided to children. Significant differences were found in three dimensions of child psychopathology on maternal scores of Child Behavior Checklist, between children who had partial information about parental illness and the other two groups of children who had explicit or no information at all. Differences were also observed in children's scores on (Youth Self Report) social problems between the same groups. The finding that children who had only partial information about their parents' illness presented more problems, illustrates the importance of "how, what, and how much" of information is communicated to children. Clinical implications are discussed in terms of the families' difficulties with communicating parental illness with their children and possible need for professional support.
TL;DR: The authors explored the associations between parent and adolescent reports of adolescent attachment and glycemic control in adolescents with Type 1 diabetes and found that more secure attachment would correlate with more optimal diabetes control.
Abstract: This pilot study explored the associations between parent and adolescent reports of adolescent attachment and glycemic control in adolescents with Type 1 diabetes. We hypothesized that more secure attachment would correlate with more optimal diabetes control. Thirty-one families completed written self-report questionnaires about adolescent attachment, demographic data, and diabetes control. Adolescents and parents reported on their perceptions of adolescents' attachment to mothers and fathers. Mean HbA1c for the sample was 7.6% (SD = 1.14). Mothers' perceptions of adolescents' attachment were significantly correlated with adolescents' hemoglobin A1c (r = -.42, p = .022), indicating that maternal perceptions of more secure attachment was associated with better glycemic control. Neither fathers' perceptions nor adolescents' reports of attachment was significantly correlated with glycemic control. Attachment appears to be associated with glycemic control in this population though the mechanisms are unclear. Mothers' perceptions of attachment had the strongest associations with control, not adolescent reports. Further research is needed to understand the mechanisms through which parent reports of adolescent attachment are associated with glycemic control.
TL;DR: This study was conducted as a phenomenological exploration of the common experiences of those who work with, and participate in, this "culture of cancer" (i.e., members of a pediatric oncology treatment team that includes medical family therapists).
Abstract: The authors propose that families facing childhood cancer inadvertently become part of a distinct cultural group. To better train clinicians working with these families, this study was conducted as a phenomenological exploration of the common experiences of those who work with, and participate in, this "culture of cancer" (i.e., members of a pediatric oncology treatment team that includes medical family therapists). Two primary themes emerged from the data: culture of change and relationships. A qualitative description of medical family therapists as part of the treatment team was also developed. Insight into this culture and recommendations for family therapists working in this area of practice are provided.
TL;DR: This paper retrospectively examined the levels of family support in a sample of 50 North American urban minority youth coping with HIV in an HIV/AIDs pediatric clinic from 2003 to 2007 and began developing a clinician-rated family support tool.
Abstract: Family therapists working in medical con-texts often struggle to Þnd a common lan-guage for communication with medicalstaff about the importance of family sup-port. HIV positive youth are a group whohave particular need for family support tohelp improve medication adherence, pro-mote more open and positive communica-tion, and decrease substance use and riskbehaviors. In this paper, the authors retro-spectivelyexaminedthelevelsoffamilysup-port in a sample of 50 North American ur-ban minority youth coping with HIV in anHIV/AIDs pediatric clinic from 2003 to2007 at 2 time points (pre- and postdiagno-sis) and began developing a clinician-ratedfamily support tool. The authors highlightthe use of a common clinician-rated familysupport tool for medical and mental healthstaff to discuss patients and their families.Results suggest that the family supportyouth were receiving fell between mixed andunsupportive levels both at pre- and postdi-agnosis. Through the use of a case examplethe authors elaborate on how this familysupport tool aided in building a collabora-tive relationship with a focus on garneringfamily support for youth coping with thediagnosis of HIV.Keywords: collaborative care, HIV youth,family support
TL;DR: Patients who were more depressed, demonstrated poorer problem-solving ability, and had poorer physical health were more likely to receive any treatment and to receive minimally adequate treatment for depression.
Abstract: In order to characterize depression treatment-as-usual in a large primary care practice in the United States with colocated mental health care, and to examine predictors of receiving any treatment and receiving adequate treatment, primary care patients were systematically approached in waiting rooms. Those with a minimum level of depression symptoms (n = 91) were asked to participate in a study in which they completed assessments of mental health service use, depression symptoms, and related problems. Results suggested that most patients with elevated depressive symptoms were receiving some type of mental health care, indicating they had been identified as depressed. However, only half were receiving "minimally adequate care." Minority patients were less likely to receive any care. Patients who were more depressed, demonstrated poorer problem-solving ability, and had poorer physical health were more likely to receive any treatment and to receive minimally adequate treatment for depression. These results suggest that, even in the context of colocated mental health care, there is still room for improving treatment of depressed patients.
TL;DR: Camp Golden Treasures, the first non-profit weight loss camp for overweight adolescent girls in the nation, was held for six weeks from June 24 to August 3, 2007 at the East Carolina University campus in Greenville, NC.
Abstract: Camp Golden Treasures, (CGT) the first non-profit weight loss camp for overweight adolescent girls in the nation, was held for six weeks from June 24 to August 3, 2007 at the East Carolina University campus in Greenville, NC. The primary goal was to support campers to lose weight, raise self esteem, and to learn the tools necessary to lead a healthy lifestyle while reducing risks for developing chronic disease or mitigating the effects of existing obesity-related conditions (sleep apnea, insulin resistance, hypertension, lower extremity dysfunction, etc.). While at CGT, campers learned about the importance of physical activity and proper nutrition through workshops, discussion groups and hands-on activities. Additionally campers were taught the necessary tools and strategies needed to make concrete, positive lifestyle changes so they can achieve a healthy weight. Due to the nature of a chronic disease such as obesity, multidisciplinary collaborators including physical therapy, nutrition, health education, management, family therapy, risk management, fundraising, public relations, medical, nursing, and physician coverage were involved in designing, planning, and implementing CGT.
TL;DR: Four themes emerged from the data: "cowboy up," access, access, self and family knowledge, and community as family, which have important implications for rural health care providers and EBP.
Abstract: Evidence-based practice (EBP) is the integration of research, clinician experience, and patient values; however, most studies focus on research and clinician experience and ignore patient values. Acute respiratory infections (ARIs) are experienced routinely by both adults and children and are often mistreated with antibiotics, despite findings from multiple research studies indicating that antibiotics do not decrease the severity or duration of ARIs. Several studies indicate that clinicians tend to prescribe antibiotics for ARIs when they perceive that patients want them; however, little is known about actual patient values related to ARI management and even less is known about rural patient values. The aim of this study was to learn more about the values, beliefs, and attitudes held by rural individuals and families regarding ARI management. Focus group interviews were conducted with 42 individuals from five rural communities in Wyoming. Four themes emerged from the data: (a) "cowboy up," (b) access, (c) self and family knowledge, and (d) community as family. These themes have important implications for rural health care providers and EBP.
TL;DR: The family context of 144 HIV+ women in drug abuse recovery who are enrolled in a randomized trial of a family intervention to improve medication adherence and reduce relapse is described and methodological implications for future family based clinical research with HIV+ adults are concluded.
Abstract: HIV/AIDS is recognized as affecting and being affected by the family. HIV+ women in drug recovery and their families are particularly at risk due to family disruption and stigma. Yet family research with HIV+ adults is hampered by the challenges of defining the family, engaging family members into research, and tracking changes in family composition. In this paper we describe the family context of 144 HIV+ women in drug abuse recovery who are enrolled in a randomized trial of a family intervention to improve medication adherence and reduce relapse. “Family” was defined to include the women’s household members, romantic partners, children and their caregivers, and others identified as a major source of support. The women reported on a total of 651 family members. We describe the family and household networks, romantic partnerships and parenting arrangements of our participants. We also describe the engagement rate of family member enrollment in the research study, and the stability of romantic partnerships, parenting and living arrangements over one year. We conclude with methodological implications for future family-based clinical research with HIV+ adults.
TL;DR: A new taxonomy is presented that uses insights from Self Determination Theory and Adult Learning Theory to expand the scope of recognized health outcomes by including what the authors call "outcomes that matter."
Abstract: The inability to cure disease or reverse dysfunction results in chronic illness. With it, patients, their families, and society face a unique set of needs and challenges. In the United States, its care consumes 75% of total health care resources. Two thirds of Medicare resources are spent on the 25% of beneficiaries having multiple chronic diseases. Surprisingly, health outcomes of greatest importance to this population remain poorly described and researched. A new taxonomy is presented that uses insights from Self Determination Theory and Adult Learning Theory to expand the scope of recognized health outcomes by including what the authors call "outcomes that matter." Targeting this broader set of outcomes may lead to more effective and meaningful care and open new areas for outcomes research in chronic illness management.
TL;DR: It was concluded that in this uncontrolled study, a biopsychosocial intervention produced a positive effect on function and self-perception of health in a group of frequent attenders from primary care.
Abstract: The objective of this study was to assess the effect of a biopsychosocial intervention on patients' feelings of well-being, perceptions of health and health indicators before and after treatment in a clinic for primary care frequent attenders. One hundred patients referred to a community-based clinic were assessed using the WONCA-COOP charts and MOS-SF36 questionnaires before and after treatment with an intervention consisting of a narrative interview, short-term cognitive-behavioral therapy, stress reduction techniques and medication. Sixty-three out of 100 patients who completed the COOP charts at intake completed them again at follow-up and 35 patients out of 40 who completed the MOS-SF36 at intake completed them at follow-up. Statistically significant improvement was noted in five out of six categories on the COOP charts ("physical fitness" "emotions", "social function", "daily activity" and "general health status") and in four out of eight categories of the MOS ("emotional health", "physical health", "social functioning", and "pain"). We concluded that in this uncontrolled study, a biopsychosocial intervention produced a positive effect on function and self-perception of health in a group of frequent attenders from primary care.
TL;DR: This work describes how enhanced access, continuity, coordination, and cultural appropriateness can facilitate favorable outcomes in even daunting circumstances and demonstrates the particular strengths of family medicine training sites in caring for similar patients and families with complex cultural and linguistic barriers to care.
Abstract: The intersection of 2 underserved populations-refugees and deaf individuals-presents novel challenges to health care systems and has not been described previously. A patient-centered medical home (PCMH) is uniquely equipped to provide outstanding primary care to disadvantaged groups. As an illustrative case study, we present our experience applying principles of the PCMH to address an extremely challenging clinical situation: providing high-quality maternity care to a recently immigrated Vietnamese refugee couple lacking formal language skills. We describe how enhanced access, continuity, coordination, and cultural appropriateness can facilitate favorable outcomes in even daunting circumstances. By collaborating with multiple interpreters, the health center staff, and the extended family, we effectively mobilized an expanded system of care to ensure informed consent and shared decision making, ultimately culminating in a successful labor and vaginal delivery. Through organizational and individual commitment to the tenets of the PCMH, we demonstrate the particular strengths of family medicine training sites in caring for similar patients and families with complex cultural and linguistic barriers to care.
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TL;DR: Only careful inspection by the medical teams, dialogue and co-operation can bring to an end the harmful behavior of Sarah, the loving mother of Joy, which damages her daughter's health and exposes her to the dangers of sophisticated medical interventions.
Abstract: Munchausen's Syndrome by Proxy is hard to diagnose and treat. The patient harms a defenseless person who is in his care, usually a baby or a child, in order to receive the attention the parent requires. Such a parent makes his child ill, introduces his body to various dangers, and with much concern and sacrifice brings him in for medical treatment, accompanying it all patiently, lovingly and anxiously. All the while, the caregiver is making sure to sabotage the healing and cause further harm. This syndrome is a challenge to family physicians, internists and pediatricians, since only the continuity of care of these families may reveal the dangerous syndrome and prevent its harmful outcomes. In this case report, Sarah, the loving mother of Joy, continuously damages her daughter's health and exposes her to the dangers of sophisticated medical interventions. Only careful inspection by the medical teams, dialogue and co-operation can bring to an end the harmful behavior of Joy's mother.
TL;DR: A confounding element to identifying MSP can also be at play when parent(s) have become proficient in the jargon and technical communication with which professionals on the healthcare team are most comfortable.
Abstract: Munchausen Syndrome by Proxy (MSP) is a disturbing diagnosis that should be considered when persistent signs and symptoms defy adequate explanation despite extensive testing. Insistence by a parent (often mother) that more, and particularly invasive investigations be pursued, should serve as a warning sign that MSP might be present. The primary care provider who has an existing, over-time, relationship with the child and family is in an important position to raise the question of MSP because this professional may be able to recognize larger dynamics at play between child and family that are less apparent to subspecialists who are focused on a narrow aspect of the evaluation. A confounding element to identifying MSP can also be at play when parent(s) have become proficient in the jargon and technical communication with which professionals on the healthcare team are most comfortable. This easily occurs in cases of MSP both because frequent hospitalizations offer ample opportunity for the articulate and inquisitive parent to pick up the ways of "medical-speak," and because the World Wide Web provides countless and effortlessly accessible sources of disease related information (albeit not always accurate or relevant to the diagnostic dilemma in question). An additional complicating factor in posing a risk for MSP is the child with a chronic illness, or one whose neonatal course has served to label the child as vulnerable.
TL;DR: Using a version of this method, the author processes losses by responding to the poems her husband wrote about the illnesses and deaths of a friend and several family members.
Abstract: Families navigate loss of loved ones in a number of ways, including the creation of narratives of family experiences during the patient's illness and death. Robinson (2004) suggests that grieving family members create poetry together. Using a version of this method, the author processes losses by responding to the poems her husband wrote about the illnesses and deaths of a friend and several family members. Each poem is followed by a letter in which the author addresses the main character of the poem in order to provide new perspectives on her identity and her memories.