Family Management Measure Research Articles

A Pilot Study of a Family Management Program for Parents of Children with Acute Lymphoblastic Leukemia

ObjectivesThe aim of this completed pilot study was to evaluate the feasibility of implementing a family management program (FMP) for parents of children with acute lymphoblastic leukemia (ALL). Data SourcesA convenience sample of 11 parents of preschool-aged children with ALL were recruited from an ambulatory chemotherapy-care clinic at a tertiary hospital in Thailand. Participants received three FMP sessions over 3 weeks. The FMP is based on two established family programs (ie, FMP-style framework and building on family strengths) and reviewed literature. The following measures were used to evaluate parents’ responses at baseline, postintervention, and follow-up: Family Management Measure, Beach-Center Family Quality-of-Life Scale, and Pediatric Quality of Life Inventory. Data were analyzed using one-way repeated-measures analysis of variance. ConclusionThe study results provide promising evidence that the FMP is feasible and improves family management and quality of life for parents of enrolled children with ALL. Implications for Nursing PracticeEducating pediatric oncology nurses and other healthcare professionals to replicate the FMP may help to provide better family management, and child quality of life support to future parents and other family members of young children diagnosed with ALL. This support should focus on educating parents about the potential effects of caring for a child with ALL on the family and fostering positive relationships within the family and offering guidance on effective family communications and decision-making processes.

Families' situation of caring for a child with a chronic condition: a mixed methods study.

To analyze the meanings attributed by family members to the situation of caring for a child with a chronic condition (CCC), in the light of the Family Management Style Framework (FMSF). A mixed-methods, parallel-convergent study, guided by the FMSF theoretical framework, using the conceptual component "Definition of the Situation". Fifty-three CCC families took part. Data was collected using a semi-structured interview, a questionnaire to characterize the participants and a Family Management Measure scale. Descriptive and inferential statistical analysis was carried out on the quantitative data and the qualitative data was subjected to deductive thematic analysis. Family members reported a view of normality in relation to CCC, also verified by the Child's Daily Life scale. However, they indicate the repercussions of the chronic condition on the family, and that they devote more attention and time to meeting the child's care needs, which was also verified in the View of the Impact of the Condition and Management Effort scales. Families have a positive view of the situation of caring for CCC at home, but point out some negative effects, such as the greater time spent caring for the child.

Psychosocial Outcomes of Parents of Children with Hirschsprung Disease Beyond Early Childhood

PurposeThe lifelong impact of Hirschsprung disease (HD) upon children and their families is increasingly well recognized. Parental psychosocial wellbeing and family functioning are determinants of psychological and health-related outcomes in children with chronic conditions. We performed a cross-sectional cohort study to evaluate the psychosocial functioning of parents/caregivers of children with HD, beyond early childhood. MethodsParents/caregivers of children with HD, aged 4–14 years, managed at a tertiary pediatric surgical center were surveyed. Parent psychosocial outcomes, including adjustment to illness and family response, were assessed using four validated measures: Family Management Measure (FaMM); Parent Experience of Child Illness (PECI); Patient Reported Outcomes Measurement Information System (PROMISR) anxiety; and PROMISR depression. The Pediatric Quality of Life Inventory (PedsQL) was administered to assess child quality of life (proxy-report). ResultsForty parents (mean age 38.7 ± 5.6 years) of children with HD (mean age 8.0 ± 2.5) participated. Parents expressed greater long-term uncertainty (PECI) and poorer perceived condition management ability (FaMM) than comparator chronic disease cohorts. Other scores for parental adjustment to their child's condition (PECI) and family response (FaMM) were comparable to reference cohorts. Symptoms of anxiety and depression were prevalent in our cohort (52.5 % and 42.5 % respectively); however, the proportion with moderate - severe PROMISR anxiety (χ2 = 2.50, p = 0.114) and depression (χ2 = 0.156, p = 0.693) scores did not significantly differ from the expected population distribution. Proxy-reported child quality of life (PedsQL) was significantly reduced relative to healthy children (p = 0.0003), but comparable to those with physical health problems with special healthcare needs (p = 0.624). ConclusionsParents of children with HD experience long-term uncertainty and have poorer perceived condition management ability than parents of children with other chronic childhood illnesses. This work highlights the importance of targeted parental education and support beyond primary surgical management, and provides a benchmark for this cohort, against which subsequent intervention-based studies may be assessed. Level of evidenceII.

Chronic Disease Management of Children Followed with Type 1 Diabetes Mellitus.

With the diagnosis of chronic illness in children, a stressful period is likely to begin in children and their families. The aim of this study was to investigate the factors affecting chronic disease management by the parents of children with T1DM diagnosed with Type 1 Diabetes Mellitus (T1DM). The sample consisted of 110 children, aged between 4-17 and their mothers. The patients had been diagnosed with T1DM for at least one year, and had attended pediatric endocrinology outpatients or were hospitalized in a single center. First, sociodemographic information about the child with T1DM were obtained. Then, the "Family Management Measure" (FaMM) was applied. The FaMM is constructed to measure family functioning and management in families who have a child with a chronic illness. Paternal years of education (p=0.036), family income (p=0.008), insulin pump use (p=0.011), time elapsed after diagnosis (p=0.048) positively affected both the management of T1DM and the child's daily life but presence of chronic diseases in addition to T1DM (p=0.004) negatively affected diabetes management. Higher maternal education year (p=0.013) and family income level (p=0.001) increased parental mutuality scores. However, as the time after diagnosis increased, parental mutuality scores decreased. It is important to evaluate the child with chronic disease with a biopsychosocial approach. This approach aims to evaluate the problems of the child and his/her family who experience the disease with a holistic approach.

Factors Affecting Family Management Among Chinese Parents of Children With Leukemia: A Multisite Study.

Effective family management can improve the ability of children's families to cope with the disease. However, the family management styles of children with leukemia are unknown. This study used a family management style framework and structural equation model to determine the direct and indirect predictors of family management of children with leukemia. A total of 496 parents of children with leukemia completed the Family Management Measure, the Feetham Family Functioning Survey, the Social Support Rating Scale, and a demographic family information form. We used structural equation modeling to explore the direct and indirect effects of the study variables on family management styles. Family functioning, family income, parental education level, and geographic location affect family management directly, among which family functioning has the most significant coefficient in the model (0.53). Siblings and social support can affect family management through the mediating effect of family functioning. Employment change can directly affect family management (-0.27) and indirectly affect family functioning (-0.08). Our results support the family management style framework. Individual and family factors such as family income, parental education level, geographic location, employment change, siblings, and social support contribute to the ease or difficulty of family management. In addition, family functioning can also mediate between contextual influences and family management styles. Family functioning plays a vital role in relationships between contextual influences and family management. We can construct family management interventions according to family management influencing factors.

Habilidade de manejo de famílias de crianças com condições crônicas para o cuidado no domicílio

ABSTRACT: Objective to analyze the relationship between families' living context and their management skills in caring for children with chronic health conditions. Method a mixed, convergent parallel study, with the Family Management Style as the theoretical framework. Participants were family members of children with chronic conditions egressing from a Neonatal Intensive Care Unit in Southeastern Brazil. For the collection of quantitative data, the instrument Family Management Measure and a questionnaire of socio-demographic characterization were used. Quantitative data were analyzed using the Stata 15 statistical program. Qualitative data were produced by means of semi-structured interviews and submitted to the Directed Content Analysis. Results the families presented a positive average score in the Management Ability scale, having greater ease to meet the care needs of the child with chronic condition at home. Favorable social and economic conditions contributed to the family's ability to care for the child with chronic health condition. Conclusions and implications for practice it was concluded that there is a relationship between the context of life of the families and the ability to manage the child in chronic condition. Being able to count on a partner or other family members can improve the management skills of these families.

O048 The CF elephant in the adolescent room: a cross sectional study of sleep and mood in adolescents with cystic fibrosis

Abstract Background Mental health issues are of increasing burden within the adolescent CF population, with known impacts from sleep disturbance. There are limited studies examining mediators of this relationship. We aimed to investigate the relationship between sleep quality and mood in adolescents with CF alongside a range potential mediating factors including socioeconomic and family influences in adolescents. Study Design Adolescents with CF aged 10–18 and their parents at a Victorian tertiary paediatric CF centre were eligible. Adolescents-parent pairs cross sectionally completed age appropriate online questionnaires assessing sleep (Pediatric Daytime Sleepiness Scale, Sleep Disturbance Scale for Children), mood (Global Anxiety Disorder-7, Patient Health Questionnaire-9, Beck’s Depression Inventory, Brigid Jordan CF screen), health-related quality of life (CF Questionnaire-Revised), family dynamics (Family Assessment Device, Family Management Measure), CF respiratory symptoms (CF Respiratory Symptom Score), and treatment adherence. Socioeconomic status and impacts from pandemic lockdowns were also surveyed. Progress to date 45 CF adolescents-parent pairs have been recruited. Questionnaires have been distributed and awaiting return of results for analysis. Intended outcome and impact We anticipate demonstrating the known association between impaired sleep quality and elevated mood scores. We will also make commentary on associations with a range of social factors (family dynamics, socioeconomic status) as well as parental mental health. Discussion will also include impacts on treatment adherence, HRQOL and respiratory symptom scores. Results from this pilot will inform the upcoming AREST CF prospective longitudinal study where the bidirectional relationships between factors studied can be further explored.

Association Between Caregivers' Family Management and Quality of Life in Children with Chronic Disease in Southern Thailand.

PurposeCaring for children with chronic diseases, caregivers have to manage their child’s daily life to prevent complications and improve their quality of life. This study investigated family management of children with chronic diseases, quality of life of children, and correlation between family management of caregivers and quality of life of children as perceived by the caregivers.Patients and MethodsThis cross-sectional study collected data from 200 pairs of caregivers and children with asthma, anemia, and thalassemia aged 5 to 12 years after receiving treatment and follow-up in the pediatric outpatient department of the tertiary hospital, June to November 2020. Research instruments comprised a Family Management Measure (FaMM) and the Pediatric Quality of Life Inventory (PedsQL 4.0). Data were analyzed using descriptive and Spearman rank correlation coefficient statistics.ResultsThe caregivers of children obtained a mean score on family management of 166.88 (S.D.= 11.32). The quality of life of children with chronic illness had a mean score of 66.59 (S.D.= 18.63). Correlation analysis revealed that easy family management of the caregivers had a positive correlation with the quality of life of children with chronic diseases. On the contrary, difficulty in family management negatively correlated with the quality of life of the children.ConclusionMost caregivers could have easy family management in caring for the children. In summary, easy family management will allow children with chronic illness to receive decent care from their caregivers, contributing to improved quality of life.

Tracing the Use of the Family Management Framework and Measure: A Scoping Review.

This article reports the results of a scoping review of research applications of the Family Management Style Framework (FMSF) and the Family Management Measure (FaMM). We identified 32 studies based on the FMSF and 41 studies in which the FaMM was used, 17 of which were based on the FMSF. Both the framework and measure have been used by investigators in multiple countries, with most applications of the FaMM outside the United States. Although the FMSF and FaMM were originally developed for use with families in which there was a child with a chronic physical condition, both have been applied to a broader range of health conditions and to studies focusing on families with an adult member facing a health challenge. Based on our findings, we make recommendations for how researchers can more fully address all aspects of the FMSF.

Family Management Style and Psychosocial Health of Children with Chronic Conditions

This study aimed to examine the associations among variables related to the sociocultural context (including social support, parenting stress, and parents’ perceived severity of their child’s condition), the ease or difficulty of family management, and psychosocial outcomes of children with chronic conditions. This cross-sectional study analyzed a convenience sample of 277 parents of children with chronic diseases who had been receiving follow-up care for at least 6 months at a university hospital located in a metropolitan area. Family members answered a questionnaire on demographics, illness characteristics, perceived severity of the child’s chronic condition, social support, the Parenting Stress Index, the Pediatric Symptom Checklist, and the Korean version of the Family Management Measure (FaMM). The six scales of the FaMM were divided into two domains, corresponding to ease and difficulty of family management, respectively. PASW version 18.0 and AMOS version 22.0 with bootstrapping analysis were used. Social support, parenting stress, and perceived disease severity significantly affected both ease and difficulty of family management. Sufficient social support, low parenting stress, and a less severe chronic condition of the child were associated with ease of family management. Both ease and difficulty of family management explained 73.9% of the variance in children’s psychosocial problems and showed significant direct effects. Care plans for chronically ill children and their families should be designed to promote positive aspects of family management by decreasing parenting stress and enhancing social support, thereby making family management easier and reducing the risk of psychosocial problems in children with chronic conditions.

Effect of parental mutuality on the quality of life of mothers of children with special health needs.

Objective:to analyze the effect of parental mutuality on the quality of life related to the health of mothers who care for children with special health needs.Method:an observational, analytical and cross-sectional study with a quantitative approach. The following instruments were applied to 181 caregiving mothers: The Medical Outcomes Study 36-Item Short Form and Family Management Measure (Parental Mutuality subscale). In the statistical analysis, Spearmans correlation and univariate and multivariate linear regression were used.Results:the total score of parental mutuality was 30.8, indicating a satisfactory perception of the caregiving mother about the way the couple shares decisions regarding the care of the child. In the multivariate regression analysis, parental mutuality maintained a statistically significant association with the domains of pain, social aspects and emotional limitations of quality of life related to health (p=<0.001, 0.003, 0.002), respectively.Conclusion:parental mutuality has a positive effect on some domains of quality of life related to health. It is recommended to plan actions aimed at strengthening the complicity and connection between the couple, especially in matters related to the care of the child with special health needs.

Tracing the Use of the Family Management Framework and Measure: A Scoping Review

Tracing the Use of the Family Management Framework and Measure: A Scoping Review

Developing a culturally appropriate version of family management measure in Taiwan: a cognitive interviewing study

ABSTRACT A measure concerning family management of children with chronic conditions is needed to identify the relationship between family management and family and child outcomes. This study aimed to use cognitive interviews to apply the Family Management Measure (FaMM) to Taiwanese families with children who have chronic conditions. When using a measure from other cultures, cultural adaption should be considered besides the language translation from foreign language to first language. Conducting a cognitive interviewing study is an efficient way to examine semantic equivalence and culture applicability of a measure. Our study involved cognitive interviews with 28 caregivers to develop the Family Management Measure Taiwanese Version (FaMM-TW). Through cognitive interviews, three types of problems in the initial translation version were identified. Four items were modified due to semantic problems. One language expression and three items with colloquial and idiomatic problems were rephrased. One item was revised for cultural and experiential reasons. Each modified item in the translated version was culturally adapted, but the key concepts in the original measure were still reserved. This paper shed light on the application of cognitive interviews to cross-culturally adapt the FaMM for Taiwanese participants with different family types.

Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.

Family functioning according to clusters of family management styles in Korean families of children with chronic atopic disease: A cross-sectional study

BackgroundChronic allergic diseases in children are often linked with behavioral problems, poor daily living, negative perceptions of health, and low life satisfaction. ObjectivesThis study aimed to propose clusters of family management styles in the Korean families of children with chronic atopic disease, including allergic asthma, atopic dermatitis, and/or allergic rhinitis and examine the level of family functioning according to these clusters. DesignCross-sectional study. SettingsA university-level hospital in metropolitan Seoul, South Korea. ParticipantsParents of children with chronic atopic disease. MethodsThis study included 146 participants. The Korean version of the Family Management Measure and the Korean Family Functioning Scale were used to assess family management styles and family functioning, respectively. Data were analyzed using SPSS 24.0 using descriptive statistics, agglomerative hierarchical clustering with Ward's method prior to k-means clustering, k-means clustering analysis, analysis of variance, and chi-squared test. ResultsFour clusters of family management styles were identified as follows: stable-resilient, less committed, parents’ mission, and challenging. Among all participants, 19.9%, 30%, 20.6%, and 29.5% belonged to each of these clusters, respectively. The level of family functioning significantly differed between the four clusters, with the stable-resilient cluster having the highest mean level and the challenging cluster having the lowest mean level. Parents’ perceived the complexity of self-managing their child's condition as one of the factors differentiating the level of family functioning of each cluster. ConclusionsThis study identified four clusters of family management styles and showed that each cluster was associated with a different level of family functioning. The unique characteristics of the four clusters may be helpful in providing individualized care and promoting positive family functioning in families with children having chronic atopic disease.

Association between family management and asthma control in children with asthma.

The purpose of this study is to investigate the association between family management and asthma control in children with asthma. This cross-sectional descriptive study recruited 142 children with asthma and their parents. We used the Family Management Measure (FaMM), the Childhood Asthma Control Test (C-ACT), and fractional exhaled nitric oxide (FeNO) detectors to assess family management and asthma control. The McNemar's test was used to determine the proportional difference between C-ACT and FeNO in evaluating asthma control. Pearson correlation analysis and multiple linear regression analysis were used to assess the relationship between family management and asthma control in children with asthma. There was no significant difference in the proportion of C-ACT and FeNO in evaluating asthma control (McNemar's test p = .593). Child's Daily Life, Condition Management Ability, and Parental Mutuality were positively correlated with C-ACT (r = 0.398 to 0.655; all p < .05) and negatively correlated with FeNO (r = -0.245 to -0.402; all p < .05); Condition Management Effort, Family Life Difficulty, and View of Condition Impact were negatively correlated with C-ACT (r = -0.416 to -0.672; all p < .05) and positively with FeNO (r = 0.248 to 0.427; all p < 0.05). Child's Daily Life, Condition Management Effort, and View of Condition Impact dimensions significantly predicted the C-ACT results, and the Condition Management Effort and View of Condition Impact dimensions significantly predicted the FeNO results (p < .05). Pediatric nurses could provide family management education for parents to improve asthma control in children. In addition, pediatric nurses might assess asthma control condition of asthmatic children in combination with C-ACT and FeNO levels.

Correlation between resilience and family management mode in nephrotic syndrome children

Objective To understand the family management and resilience in nephrotic syndrome children to explore the influence of family management on resilience so as to provide a reference for family management and environmental support for chronic disease children. Methods From April 2017 to April 2018, we selected 130 nephrotic syndrome children and main caregivers at a Class Ⅲ Grade A comprehensive children's hospital as subjects by convenience sampling. The investigation was carried out with the general information questionnaire, Chronic Illness Children's Resilience Scale (CICRS) and Family Management measure (FaMM) . A total of 130 questionnaires were sent out and 127 valid questionnaires were collected with 97.69% for the valid recovery rate. Results Among those 127 nephrotic syndrome children, the total score of resilience was (99.84±12.53) . There were 15 (11.81%) children with the high level of resilience, 102 (80.31%) children with medium level and 10 (7.87%) children with the low level. Results showed that the score of child daily life had a positive correlation with the total score of children's resilience (P<0.05) ; scores of family members' fears of disease and difficulty of disease management had negative correlations with the score of children's coping style (P<0.05) ; score of family members' management ability had a positive correlation with the score of children's coping style (P<0.05) ; score of disease burn out was negatively correlated with the score of interpersonal relation (P<0.05) ; score of supporting each other of parents were positively correlated with the scores of children's individual characteristics and children's perceived family influence (P<0.05) . Conclusions Resilience and family management of nephrotic syndrome children need to be improved. Nurses should pay attention to the influence of family support and environmental support on psychological factors in children, and guide children to improve their coping capacity and family members to positively perceive children's school function, interpersonal relation and family environment to improve children's psychological health. Key words: Nephrotic syndrome; Resilience, psychological; Family management; Correlation

Chinese family care patterns of childhood rheumatic diseases: A cluster analysis

ObjectivesThe purpose is to distinguish family care (FC) patterns of childhood rheumatic diseases in Chinese families and to determine the predictors of FC patterns. MethodsThis secondary analysis contained two cross-section surveys with a convenient sample of totally 398 caregivers who have a child with rheumatic diseases from four pediatric hospitals. Caregivers were required to completed Family Management Measure questionnaire. Cluster analysis was used to distinguish patterns and multinomial logistic regression analysis was used to find predictors. ResultsFour patterns were identified: the normal-perspective and collaborative (28.4%), the effortless and contradictory (24.6%), the chaotic and strenuous (18.3%), and the confident and concerning (28.7%). Disease category (χ2 = 21.23, P = 0.002), geographic location (χ2 = 8.41, P = 0.038), maternal educational level (χ2 = 12.69, P = 0.048) and family monthly income (χ2 = 33.21, P < 0.001) predicted different patterns. ConclusionsFC patterns were different among families. Disease-related and family-related factors were vital predictors to distinguish patterns consistent with the Family Management Style Framework. The result assisted that clinicians recognize FC patterns and predictors effectively to provide tailored advice in time.

Family Management of Down Syndrome: Cross-Cultural Perspectives

Aims With a worldwide incidence of one in every 1000 – 1100 live births, Down Syndrome (DS) is the most common genetic cause of intellectual disability. How families incorporate the child's special needs into everyday family life (family management) influences both child and family adaptation. The purpose of this analysis was to assess the internal consistency reliability of seven translations of the Family Management Measure (FaMM) and to examine cross-cultural differences in family management of DS. Methods 2740 parents of individuals with DS (2387 mothers and 353 fathers) from 11 countries completed the 53-item FaMM as part of a cross-cultural study of adaptation in families of individuals with DS. Selected descriptive statistics were computed. Reliability was assessed using Cronbach's alpha. Cross-cultural comparison of family management was addressed by rank ordering FaMM subscale means with a higher rank indicating greater ease in family management. Results Parents from Portugal, Spain and the US had mean scores reflecting greater ease in family management across all FaMM subscales; parents from Ireland, Italy, Korea, and Thailand had mean scores across all FaMM subscales indicating more problematic family management. The rankings for Brazil, Netherlands, and United Kingdom reflected areas of both management ease and difficulty. Conclusions Findings from this study suggest there are cross-cultural differences in family management of DS. More research is needed to fully understand if these differences are related to social determinants of health such as culture, societal attitudes towards DS and national approaches to integrating non-invasive prenatal testing into clinical practice.

Family Management Style as a Mediator between Parenting Stress and Quality of Life of Children with Epilepsy

PurposeTo examine the possible relationship between parenting stress and quality of life of children with epilepsy together with the mediating effects of family management styles on this relationship. Design and methodsWe conducted a descriptive and exploratory study using data of participants were 93 parents with an epileptic child. Instruments were self-reported questionnaires including the Korean version of the Quality of Life (QOL) in Childhood Epilepsy Questionnaire (K-QOLCE), the Korean version of the Parenting Stress Index (PSI), and the Korean version of the Family Management Measure (FaMM). Six domains of FaMM were clustered into two domains: easy or difficult family management styles. Descriptive and Pearson correlation path analyses were used to analyze the data. ResultsThe direct effects of PSI on QOL were not significant (b = −0.21, t = −0.94, p = .349). Indirect effects of PSI through easy family management styles on QOL were significant (b = −0.33, 95% CI = [−0.77, −0.05]). Additionally, two other effects (i.e., indirect effects through difficult family management styles and direct effects) were non-significant. All effects of PSI on QOL were fully mediated through easy family management styles. ConclusionEasy family management styles are the most important factor in predicting QOL in childhood epilepsy patients. Practice implicationsComprehensive intervention programs are recommended for parents and families of epileptic children to promote positive perceptions of the child's life and to increase parental management ability of the child's condition and parental mutuality.