Family Support of Older Caregivers: Factors Influencing Change in Quality of Life.

Understanding factors that can improve the quality of life (QOL) of older caregivers of people with intellectual and developmental disabilities (IDD) is important in broadening participation in family empowerment interventions. The purpose of this study was to identify the factors influencing the QOL of older caregivers (50+) of adults with IDD who participated in a peer-mediated state-wide family support project. The research study used a quasi-experimental research design grounded in the family quality of life (FQOL) framework, with pretest and posttest data gathered from 82 caregivers. Correlation and regression analyses were conducted to identify factors influencing changes in the QOL of study participants. Findings indicated that improvements in caregiver QOL after participating in the project could be explained by caregiver's employment status, increased global FQOL, and decreased caregiver stress and depression.

Assessing the Nurse Anesthesiologists' Self-Perceived Preparedness to the Care for Individuals With Intellectual and Development Disability: A Cross Sectional Survey.

Approximately 6.5 million people in the U.S. are affected by an intellectual or developmental disability (IDD). However, their healthcare needs often remain unmet due to the inadequate education and training of healthcare professionals. Given that various procedures may require anesthesia in as many as 40% of individuals with IDD, Certified Registered Nurse Anesthetist Programs need to incorporate IDD training into their curriculum. A cross-sectional survey using a 12-item questionnaire was conducted to assess IDD training. Statistical analyses included the chi-square test and participant demographics were reported as frequencies or percentages. Numerical data were presented as means and standard deviations. A total of 277 respondents completed the survey and most reported (55%) a lack of IDD training at nurse anesthesia programs and 90% recognized the need for additional training. Only 24% felt competent in providing care for patients with IDD, while 52% reported feeling somewhat or very competent. A significant correlation was found between the number of clinical anesthesia experiences and self-rated competence (P < 0.001). Incorporating IDD training into the nurse anesthesia curriculum is critical to preparing competent graduates capable of serving this diverse population. Nurse anesthesia programs should evaluate their curriculum to effectively address this healthcare inequality.

Comparing the initial impact of COVID-19 on burden and psychological distress among family caregivers of children with and without developmental disabilities.

The current COVID-19 pandemic is presenting challenges for families (Cluver et al., The Lancet, 2020), which may be exacerbated for caregivers of children with developmental disabilities (DDs; Center on the Developing Child, Stress, hope, and the role of science: Responding to the coronavirus pandemic, 2020). The purpose of this study was to explore caregiver burden and psychological distress among caregivers of children with DD as compared to caregivers of typically developing children across the United States as a result of COVID-19. Between 2 weeks and 1 month following COVID-19-related school closures, a total of 460 caregivers from across the U.S. completed an online survey via Qualtrics; recruitment and initial survey completion occurred simultaneously. Of the total sample of eligible participants (N = 407), 225 were the primary caregiver of a child with autism spectrum disorder (ASD)/attention-deficit/hyperactivity disorder (ADHD) and 182 were the primary caregiver of a child without ASD/ADHD. Participants across groups indicated varying levels of exposure to COVID-19 and an impact of COVID-19 at the community and individual or family levels. However, caregivers of children with ASD/ADHD reported significantly higher levels of burden, depression, anxiety, and stress. Overall, findings are consistent with anecdotal and preliminary reports that all caregivers are experiencing COVID-19-related challenges, with caregivers of children with ASD/ADHD experiencing even greater challenges, particularly with regard to burden and psychological distress. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Case Report: Managing Growth Failure While Maintaining Exclusive Breastfeeding.

This case study presents a mother who was able to maintain exclusive breastfeeding after having an infant who experienced growth failure between the two- and four-month pediatric primary care visits. This mother was exclusively breastfeeding her child and the infant was noted to "fall off the growth curve" at the four-month infant pediatric visit. At this point the mother was advised to formula feed her infant. The mother did not want to give formula and sought out assistance from the first author who connected the mother with an advance practice nurse at the pediatric site. By working with a nurse practitioner to develop an individualized feeding plan, the mother's breastfeeding relationship was able to be maintained and the infant gained weight. Despite receiving initial recommendations to formula feed her child, we were able to work beyond those recommendations by providing evidence based breastfeeding interventions and support. A breastfeeding assessment is an important factor in each wellness visit.

Vivências de enfermeiros na consulta de puericultura: percepção sobre os sinais de risco/atraso para o des-envolvimento infantil / Nurses' experiences in childcare consultation: perception of the risk/delay for child development / Experiencias de enfermeras en consulta de puericultura: percepción de los signos de riesgo/retraso para el desarrollo infantil

Introdução: A infância é um período da vida de grande transformação física, psíquica e social e como forma de prevenir enfermidades e promover o desenvolvimento saudável das crianças, as políticas de saúde vigentes no Brasil, estabelecem um acompanhamento longitudinal e com foco na atenção integral através da puericultura. Objetivo: Compreender a percepção e a prática do enfermeiro sobre a identificação dos sinais de risco/atraso do desenvolvimento em crianças acompanhadas durante a consulta de enfermagem em puericultura. Métodos: Estudo qualitativo, realizado com 12 enfermeiros que trabalham nas unidades de saúde da família de um distrito sanitário da cidade do Recife, entre janeiro e março de 2017. Para a coleta de dados foi empregada entrevista individual semiestruturada com o uso da gravação, sendo os mesmos submetidos à análise de conteúdo na modalidade temática. Resultados: A maioria das enfermeiras conhecia e utilizava a ficha de acompanhamento do desenvolvimento infantil proposta pelo Ministério da Saúde (MS) e inserida na caderneta da criança durante a consulta de puericultura, entretanto, a linguagem utilizada para definir os sinais de risco e atraso não é precisa. Porém, quando identificam alguma alteração no Crescimento e Desenvolvimento (CD) recorrem a equipe multiprofissional para acompanhamento dos casos. Considerações finais: O estudo permitiu perceber e discutir a importância da avaliação do desenvolvimento neuropsicomotor, destacando a enfermeira como agente essencial desse processo. Ficou demonstrado na prática das enfermeiras o conhecimento dos protocolos para o acompanhamento do CD, porém destacou-se que a falta de cumprimento e registro dos parâmetros/indica-dores de avaliação orientados pelo MS foi um fato dificultador para uma assistência integral, sem deixar de enxergar a família como aliada no cuidado à criança.

Introduction: Childhood is a period of life of great physical, psychological and social transformation and as a way to prevent diseases and promote the healthy development of children, the health policies in force in Brazil, establish a longitudinal monitoring and focusing on comprehensive care through childcare. Objective: Understand the nurse's perception and practice on the identification of signs of risk / delay in development in children monitored during the nursing consultation in childcare. Methods: Qualitative study, conducted with 12 nurses who work in family health units in a health district in the city of Recife, between January and March 2017. For data collection, a semi-structured individual interview was used with the use of the recording, the same being analyzed by the thematic content analysis. Results: Most nurses knew and used the child development monitoring form proposed by the Ministry of Health (MH) and inserted in the child's handbook during the pediatric consultation, however, the language used to defi ne the signs of risk and delay is not accurate. Yet, when they identify any change in Growth and Development (GD), they use the multidisciplinary team to monitor the cases. Conclusions: The study made it possible to perceive and discuss the importance of assessing neuropsychomotor development, highlighting the nurse as an essential agent of this process. It was demonstrated in the nurses' practice the knowledge of the protocols for the monitoring of the GD, however it was highlighted that the lack of compliance and registration of the parameters/evaluation indicators oriented by the MH was a hindering factor for comprehensive care, without fail to realize the family as an ally in child care.

Introducción: La infancia es un período de vida de gran transformación física, psicológica y social y, como una forma de prevenir enfermedades y promover el desarrollo saludable de los niños, las políticas de salud vigentes en Brasil establecen un monitoreo longitudinal y se centran en la atención integral a través de la puericultura. Objetivo: Comprender la percepción y práctica de la enfermera sobre la identificación de signos de riesgo/retraso en el desarrollo en niños monitoreados durante la consulta de enfermería en la puericultura. Métodos: Estudio cualitativo, realizado con 12 enfermeras que trabajan en unidades de salud familiar en un distrito de salud de la ciudad de Recife, entre enero y marzo de 2017. Para la recopilación de datos, se utilizó una entrevista individual semiestructurada con el uso de la grabación, siendo el mismo sometidos al análisis del contenido en la modalidad temática analizado por el método de interpretación de los sentidos. Resultados: La mayoría de las enfermeras conocían y usaban el formulario de monitoreo del desarrollo infantil propuesto por el Ministerio de Salud (MS) e insertado en el manual del niño durante la consulta pediátrica, sin embargo, el lenguaje utilizado para definir los signos de riesgo y retraso no es exacto. Sin embargo, cuando identifican cualquier cambio en el Crecimiento y Desarrollo (CD), utilizan el equipo multidisciplinario para monitorear los casos. Consideraciones finales: El estudio permitió percibir y discutir la importancia de evaluar el desarrollo neuropsicomotor, destacando a la enfermera como un agente esencial de este proceso. Se demostró en la práctica de las enfermeras el conocimiento de los protocolos para el monitoreo de la CD, sin embargo, se destacó que la falta de cumplimiento y registro de los parámetros/indicadores de evaluación orientados por el MS era un factor que obstaculizaba la atención integral, si no se dan cuenta de la familia como aliada en el cuidado infantil.

Meeting the need: Creation of an online infection prevention course by the Golisano Institute for Developmental Disability Nursing for direct support professionals during COVID-19.

The Center for Disease Control (CDC) recommended that direct support professionals (DSPs) take additional steps to protect people with disabilities during COVID-19 and receive training on the use of personal protective equipment and infection prevention. The Golisano Institute for Developmental Disability Nursing identified this as an unmet need and created an online asynchronous course for DSPs on infection prevention and use of personal protective equipment to reduce transmission of COVID-19 among individuals with disabilities and DSPs. Constructivism, experiential learning theory, and active learning theory guided content development. The course used games to break-up dense information into more manageable chunks as a means to increase learner engagement and motivation. The course was delivered on a dynamic Learning Management System to allow for a variety of content authoring tools to be utilized. After evaluation, the course was disseminated to DSPs. Future directions include a broader infection protection course for DSPs, without a direct focus on COVID-19.

Examining the impact of COVID-19 in ethnically diverse families with young children with intellectual and developmental disabilities.

BACKGROUND: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals. METHOD: The present study sought to examine the impact of COVID-19 in 77 ethnically, linguistically and socioeconomically diverse families with young children with intellectual and developmental disabilities (IDDs) in California and Oregon, who were participating in larger intervention studies. Parents responded to five interview questions about the impact of the pandemic, services for their child, silver linings or positive aspects, coping and their concerns about the long-term impact of the pandemic. RESULTS: Parents reported that their biggest challenge was being at home caring for their children with the loss of many essential services. Parents reported some positive aspects of the pandemic, especially being together as a family. Although there were positive aspects of the situation, many parents expressed concern about long-term impacts of the pandemic on their children's development, given the loss of services, education and social engagement opportunities. CONCLUSION: Results suggest that parents of young children with IDD report significant challenges at home during the pandemic. Professional support, especially during the reopening phases, will be critical to support family well-being and child developmental outcomes.

Factor structure of the professional quality of life scale among direct support professionals: factorial validity and scale reliability.

BACKGROUND: Direct support professionals (DSPs) support people with intellectual and developmental disabilities in activities of daily living. DSPs may experience both contentment and struggles with their work. As agencies grapple with their recruitment and retention, understanding DSPs' holistic work experience is important. The Professional Quality of Life (ProQOL) scale assesses multiple domains of work experiences (i.e. compassion satisfaction, burnout and secondary traumatic stress). Despite extensive use across helping professions, the ProQOL is largely absent from DSP research. METHOD: This study examined the factor structure of the ProQOL with DSPs. Using secondary data from 495 DSPs, confirmatory factor analysis was conducted to determine if the original three-factor structure holds for this population. RESULTS: We confirmed the factorial validity of the ProQOL with the three-factor solution. In the validation process, some modifications were suggested to the model, which also improved the scale reliability. CONCLUSIONS: The current study provides initial evidence of the factorial validity of the ProQOL when used with DSPs, as well as recommendations for subsequent improvements and future research.

Equity Access: Online Nursing Education on Care for People With Disabilities.

BACKGROUND: Few schools of nursing have explicit content that focuses on disability as a multidimensional construct. Time and expertise are two barriers to increasing that material. METHOD: To address this gap, a set of online modules were developed to provide an introduction to the specialized knowledge related to the care of individuals with disabilities, with a focus on advocacy. The modules include multiple teaching strategies and can be assigned as supplemental to existing coursework. The modules were tested with 256 undergraduate senior-level nursing students. RESULTS: Overall, students assessed the learning experience as very effective and reported achieving the stated learning objectives. Negative feedback was primarily issues related to technology and ease of use of one particular module. CONCLUSION: The Equity Access modules are a feasible way to supplement existing nursing curricula content specific to the care of individuals with disabilities. Additional systematic evaluation is needed to assess how the modules influence practice. [J Nurs Educ. 2020;59(6):349-351.].

Negative social interactions and coping behaviors: experiences of Japanese mothers caring for children with special needs in disaster areas.

OBJECTIVE: This study aims to identify the challenging experiences pertaining negative social interactions and the coping behaviors of mothers of children with special needs after two major earthquakes in Japan. A qualitative content analysis was conducted based on the interviews of 26 mothers of children with special needs who had experienced the Great East Japan Earthquake in 2011 or Kumamoto Earthquake in 2016. RESULTS: The themes extracted were "perceiving pressures and unfairness," "failing to obtain support and deeper understanding," "realizing child's characteristics that are difficult for others to understand," and "tackling challenges on their own in different ways." The experienced negative social interactions and coping behaviors were found to be similar in both earthquakes. Although the Japanese legislation was amended 2 years after the Great East Japan Earthquake, it may not have had necessarily improved the mothers' situations. Thus, while it is important to provide specific support for families of children with special needs after natural disasters and organize food supplies with a focus on family units, it is also important to increase Japanese society's understanding of the varied characteristics of disabilities.

An Exploration of Health Behaviors in a Mind-Body Resilience Intervention for Parents of Children with Developmental Disabilities.

OBJECTIVE: Parents of children with special needs such as learning and attentional disabilities (LADs) and autism spectrum disorder (ASD) are at high risk for stress-related disorders. The demands of parenting may compete with time for self-care behaviors such as physical activity, healthy eating, and adequate sleep. The objective was to describe health behaviors among this understudied population and assess the changes after a resilience intervention. METHODS: This was a secondary data analysis of a randomized controlled pilot virtual mind-body resilience intervention (Stress Management and Resiliency Training: A Relaxation Response Resiliency Program) trial for parents of children with LADs (n = 52) and ASD (n = 47). Parents completed self-report questionnaires about their weekly physical activity, eating behaviors, sleep duration, and fatigue before and after the 8-week intervention. Descriptive statistics and pre-post intervention effect sizes (Cohen's d) were calculated. RESULTS: Both parent groups reported suboptimal levels of health behaviors at baseline, but ASD parents reported lower health behaviors than LAD parents. LAD parents improved more on physical activity, with a higher percentage meeting recommendations at postintervention follow-up (d = 0.71) than ASD parents (d = 0.01). Eating behaviors showed small effect size improvements for both groups. Although sleep duration improved only with small or medium effect sizes for both groups, ASD parents rated their fatigue lower after the intervention (d = 0.81). CONCLUSION: Parents of children with special needs who participated in a virtual resilience intervention demonstrated suboptimal health behaviors. There is a need for targeted interventions for health behaviors that can promote resilience in these high-stress populations.

A nurses' ethical commitment to people with intellectual and developmental disabilities.

Aim: This article explores the issues of knowledge deficits of healthcare professionals in meeting the needs of people with IDD throughout the life span, and to identify factors that contribute to these deficits. Although statistics vary due to census results and the presence of a "hidden population," approximately 1%-3% of the global population identify as living with an intellectual or developmental disability. People with intellectual or developmental disability experience health inequities and confront multiple barriers in society, often related to the stigma of intellectual or developmental disability. Disparities in care and service are attributed to a lack of knowledge and understanding among healthcare providers about people with intellectual or developmental disability, despite their increased risk for chronic health problems. The near absence of educational programs in nursing both nationally and internationally contributes to this significant knowledge deficit. In addition, ethical considerations between paternalistic beneficence and idealized autonomy have resulted in a lack of clear direction in working with a population that is often ignored or exploited. Nurses who view people with intellectual or developmental disability as vulnerable without assessing or acknowledging their capabilities may err toward paternalism in an effort to "first do no harm." Likewise, nurses who fail to recognize the challenges and limitations faced by people with intellectual or developmental disability may not provide sufficient protections for a vulnerable person. People with intellectual or developmental disability are not binary, but rather complex individuals with a myriad of presentations. This article seeks to encourage a well-informed model of nursing care. Through an ethical lens, this article explores the nurse's ethical commitments in cases of victimization, access to care, decision making, and the provision of optimal end-of-life care for people with intellectual or developmental disability.

Coparenting and Child Outcomes in Families of Children Previously Identified With Developmental Delay.

The current study explored cross-sectional relations between coparenting quality and child problem behaviors, as measured by parent report and direct observation, in families of school-aged children previously identified with a developmental delay in early childhood. Parents' reports of difficulty with coparenting problems predicted child problem behaviors. For primary caregivers, parenting self-efficacy mediated the relation between coparenting quality and problem behaviors. Observed undermining behavior significantly positively predicted child appropriate behavior across specific tasks and observed partner support behavior significantly negatively predicted child appropriate behavior across specific tasks. Discussion focuses on the clinical significance of these findings and future research directions.

Avaliação do conhecimento de Agentes Comunitários de Saúde sobre o conteúdo da Caderneta da Saúde da Criança / Assessment of the knowledge of Community Health Agents on the content of the Child Health Records

Objetivo: caracterizar o conhecimento dos agentes comunitários de saúde (ACS) sobre o conteúdo da Caderneta da Saúde da Criança (CSC) e identificar a capacidade de detectar atraso no Desenvolvimento Neuropsicomotor (DNPM) das crianças por meio da caderneta. Método: estudo transversal, realizado entre agosto de 2018 e novembro de 2019, em Recife, Pernambuco (PE). A amostra foi composta por 109 ACS de diferentes municípios de PE, que responderam, voluntariamente, a um questionário semiestruturado sobre a CSC. A análise estatística foi realizada pelo programa Statistical Package for the Social Sciences (SPSS) versão 20.0, com medida da razão de chances e intervalos de confiança, assumindo um erro de 5% (Odds Ratio - OR e IC 95%). Resultados: 88,1% (n=96) dos ACS eram do sexo feminino; 85,2% (n=92) pertenciam à Estratégia de Saúde da Família e 58,9% (n=63) tinham cobertura de equipe do Núcleo Ampliado da Saúde da Família e Atenção Básica. Informações sobre vacinação foi o item mais assinalado na CSC (99,1%). Quanto à avaliação do DNPM, 60,4% dos ACS relataram saber usar o instrumento de vigilância contido na CSC. Uma análise bivariada encontrou que o ACS que já tinha participado de algum treinamento sobre DNPM referiu sentir-se 6,75 vezes mais capaz de detectar atraso no DNPM. Conclusão: a utilização da CSC pelos ACS tem sido caracterizada, principalmente, para acompanhamento e registro de atividades de vacinação e de crescimento pôndero-estatural. A realização de treinamentos com esses trabalhadores pode ampliar sua qualificação para o acompanhamento do DNPM, fortalecendo a vigilância do desenvolvimento infantil.

Objective: To characterize the knowledge of community health agents (CHA) on the content of the Child Health Records (CHR) and to identify the ability to detect delays in the Neuropsychomotor Development (NPMD) of children through the handbook. Method: cross-sectional study, conducted between August 2018 and November 2019, in Recife, Pernambuco (PE). The sample consisted of 109 Community Health Agents from different cities of Pernambuco (PE) who voluntarily answered a semi-structured questionnaire about the information contained in the CHR. Statistical analysis was performed using the Statistical Package for Social Sciences (SPSS), version 20.0, and by measuring the odds ratio and confidence intervals, assuming a 5% error (OddsRatio - OR and 95% CI). Results: A total of 88,1% (n = 96) of the CHA were female, 85.2% (n = 92) belonged to the Family Health Strategy and 58,9% (n = 63) had team coverage from the Expanded Center of the Family Health and Primary Care. Vaccination information was the most highlighted item in the CHR (99,1%). As for the NPMD assessment, 60,4% of the CHA reported knowing how to use the surveillance instrument contained in the CHR. A bivariate analysis found that the CHA who had already participated in some NPMD training reported feeling 6,75 times more capable of detecting delay in the NPMD. Conclusion: The use of the CHR by the CHA has been characterized mainly for monitoring and recording activities of vaccination and statural weight growth. Conducting training with these workers can increase their qualification for monitoring the NPMD follow-up by strengthening surveillance of child development.

Caregiving in the shadows: National analysis of health outcomes and intensity and duration of care among those who care for people with mental illness and for people with developmental disabilities.

BACKGROUND: The health impacts of caring for people with mental illness (MI) and developmental disabilities (DD) are not well understood. OBJECTIVE: The present study explored whether health outcomes differed between MI and DD caregivers, and if intensity and duration of care moderated health outcomes. METHODS: Nationally representative 2016 Behavioral Risk Factor Surveillance System survey data were used to explore how caring for people with MI (n = 1071) and DD (n = 888) impacted general health status and physical and mental health days, and whether intensity and duration of care moderated health outcomes. Logistic regression models and cumulative logistic regression models were used to model health outcomes. RESULTS: Caregivers had worse health (p = 0.0001) and more poor physical (p < 0.0001) and mental health days (p < 0.0001) than non-caregivers. Relative to DD caregivers, MI caregivers had worse health status (p = 0.02) and more poor physical (p = 0.02) and mental (p = 0.003) health days. As intensity of care increased, MI caregivers had more poor physical health days (p = 0.04) than DD caregivers and as duration of care increased, MI caregivers had worse health status (p = 0.03) than DD caregivers. CONCLUSIONS: Although the care provided to adults with DD was more intense and for a longer duration, MI caregivers had poorer health outcomes and were more impacted by intensity and duration of care. Implications for supporting MI and DD caregivers are discussed.

Physical inactivity among parents of children with and without Down syndrome: the National Health Interview Survey.

BACKGROUND: Emerging evidence suggests that parents of children with intellectual disabilities have poorer physical health than parents of typically developing children. However, it is unclear why. The purpose of this study was to examine differences in physical inactivity among a population-based sample of parents of children with and without Down syndrome. METHODS: Data for this analysis come from 11 waves (2005-2016) of the National Health Interview Survey, a U.S. nationally representative survey. Minutes per week of leisure-time physical activity were ascertained by self-report with physical inactivity defined as reporting no leisure-time physical activity. Parents were classified as (1) parents of typically developing children, (2) parents of children with Down syndrome, (3) parents of children with a developmental disability that had a high functional impact (autism, cerebral palsy, vision impairment or hearing impairment), (4) parents of children with an intellectual or developmental disability, but who did not have Down syndrome or a high-impact developmental disabilities, and (5) parents of children with other special health care needs. RESULTS: Parents of children with Down syndrome were more likely to be physically inactive compared with parents of typical children (odds ratio [OR]: 1.51 [95% confidence interval, CI: 1.08, 2.12]) and had the lowest likelihood among all subgroups of parents to children with developmental disabilities or special health care needs. Parents of children with Down syndrome also had a significantly greater likelihood of being physically inactive compared with parents of children with other special health care needs (OR: 1.56 [95% CI: 1.11, 2.19]), with developmental disabilities without high functional impact (OR: 1.58 [95% CI: 1.12, 2.24]) and with developmental disabilities with high functional impact (OR: 1.46 [95% CI: 1.03, 2.08]). CONCLUSION: Parents of children with Down syndrome are more likely to be physically inactive compared with parents of typically developing children and parents of children with other developmental disabilities or special health care needs. These findings suggest that parents of children with Down syndrome are a population in urgent need for interventions/programmes that promote physical activity, particularly as child well-being is linked to caregiver health.

Interpersonal capitalization moderates the associations of chronic caregiving stress and depression with inflammation.

Chronic stress and depression can enhance chronic low-grade inflammation. Interpersonal factors may buffer the impact of stress and depression on inflammation. Interpersonal capitalization is a social support process in which one discloses positive personal events and experiences to close others. Greater capitalization may attenuate the deleterious impact of chronic stress and depression. The goal of the current study was to assess whether interpersonal capitalization is associated with inflammation and whether it moderates the association of chronic stress and depression with inflammation. In this cross-sectional study of chronic caregiving stress, 222 caregiving mothers of adolescents with developmental disabilities or comparison mothers of typically developing adolescents completed a self-reported daily diary assessment of capitalization, the Center for Epidemiological Study-Depression scale, and provided blood samples to assess interleukin-6, tumor necrosis factor-α, and C-reactive protein, three circulating inflammatory markers. Regression analysis indicated that there was no main effect of capitalization on inflammation, p = .24, R2 = .006. However, there was a significant three-way interaction among capitalization, chronic caregiving stress, and depressive symptoms, p = .01, R2 = .02. Among participants with lower capitalization, greater depressive symptoms were associated with higher inflammation in the caregiving group, but not in the comparison group. Among participants with higher capitalization, greater depressive symptoms were no longer significantly associated with higher inflammation among caregivers, but were marginally related to inflammation in the comparison group. Capitalization may thus be an interpersonal process mitigating the effects of chronic stress and depression on inflammation.

Generativity and Well-Being of Midlife and Aging Parents With Children With Developmental or Mental Health Problems.

Parents who have a child with a developmental problem or mental disorder often provide support and assistance to their child throughout their lives, and the burden of caregiving can have an adverse impact on parents' mental and physical health. Using Erikson's theory as a framework, the present study investigated generativity as a moderator of the effects of parenting a child with a disability on parents' well-being during mid- to late life. Using data from the study of Midlife in the United States, we identified 220 parents who had a child with a disability and 3,784 parents whose children did not have a disability. Regression analyses showed that the effect of parenting a child with a disability on negative affect, positive affect, and physical health was conditional on both parental gender and generativity, with mothers experiencing greater adverse effects of parenting but showing a benefit from high levels of generativity.

Correlates of current caregiving among siblings of adults with intellectual and developmental disabilities.

BACKGROUND: As individuals with intellectual and developmental disabilities (IDD) grow older, siblings are likely to become caregivers for their brothers and sisters with IDD. Thus, it is important to identify the correlates of sibling caregiving to facilitate transitions to caregiving roles. METHOD: This study involved the secondary analysis of a national data set of 429 adult siblings of individuals with IDD. RESULTS: Current sibling caregiving was positively correlated with sibling relationship quality, sibling advocacy and future planning, maladaptive behaviours of individuals with IDD, and family size. Current sibling caregiving was negatively correlated with parent caregiving abilities and functional abilities of individuals with IDD. Further, among siblings who provided care, the level and nature of sibling caregiving were negatively correlated with parent caregiving abilities. CONCLUSIONS: The results identify the correlates of current caregiving among siblings of individuals with IDD. More research is needed to understand current sibling caregiving.

Siblings of adults with intellectual and developmental disabilities: Their knowledge and perspectives on guardianship and its alternatives.

BACKGROUND: Siblings of adults with intellectual and developmental disabilities (IDD) often support their brothers and sisters through caregiving and guardianship. METHODS: In this qualitative study, the knowledge and views of 10 adult siblings were explored. RESULTS & CONCLUSIONS: The tripartite impact of limited knowledge of guardianship and alternatives, the viewpoint of full guardianship as necessary and the desired/anticipated roles of siblings combined to create the Sibling Reciprocal Effect (SRE). The present authors define SRE as the phenomenon of siblings to recognize the applicability of complementary forms of guardianship for other adults with IDD, but fail to see the advantage of available decision-making alternatives with their own brothers/sisters. Instead, siblings defer to full guardianship as the preferred mechanism for decision making. Implications for practitioners include informing families of the full range of options for supporting persons with IDD in decision making. Future research suggestions include examining the elements of the SRE and siblings' knowledge regarding guardianship and the alternatives.