Effects of dyadic interventions on psychological outcomes among cancer patients with non-active treatment: a systematic review and meta-analysis.

OBJECTIVE: Cancer and its treatment can generate substantial psychological distress (depression and anxiety). The objective of this systematic review and meta-analysis is to explore the effectiveness of dyadic interventions on psychological outcomes in cancer patients with non-active treatment and to test subgroup analyses to explore the source of heterogeneity affecting effect sizes. DESIGN: Systematic searching across eight databases identified studies related to dyadic interventions for psychological outcomes of cancer patients published between 2007 and 2022. Rigorous inclusion and exclusion criteria were utilized. Random-effects models were used to compute effect sizes with Hedge's g, forest plot, and Q and I2 statistics to measure heterogeneity. Moderator analyses were examined. RESULTS: Eleven primary studies were identified (938 patients with cancer, 56.14 ± 7.29 years old). Overall, dyadic interventions significantly improved depression (g = .36, 95% confidence interval .026 to .68, I2 = 76%) and anxiety (g = .29, 95% confidence interval 0.14 to .45, I2 = 0%) compared to controls. With subgroup analyses, fidelity of dyadic interventions, number of weeks across intervention, and number of days after intervention measured were moderators affecting effect sizes. CONCLUSION: Dyadic interventions appear to be effective among adults with cancer with non-active treatment. Additional research is needed to explore the efficacy of dyadic interventions among more diverse samples and to examine routes for integrating dyadic interventions into practice. IMPLICATIONS FOR CANCER SURVIVORS: Adult with cancer might participate in the dyadic intervention for improving psychological outcomes.

Financial strain among West-Javanese parents: its association with marital satisfaction and quality of life, and the role of dyadic coping.

In the past decade, the concept of dyadic coping as a buffer against stress in romantic relationships has received much attention in Western countries, but it has rarely been studied in non-Western countries and among parents with school-aged children. The aim of the present study was to investigate the moderating effect of dyadic coping on the link between financial strain and marital satisfaction, as well as the mediating effect of marital satisfaction on the relationship between financial strain and quality of life. There were 751 heterosexual couples whose eldest child aged 7-12 years in West Java, Indonesia (mean age husband = 37.53 SD = 5.09; mean age wife = 34.42 SD = 4.85) fulfilled the paper and pencil questionnaires in the study. The moderated mediated model illustrated that (1) greater levels of dyadic coping weakened the negative association between financial strain and marital satisfaction for husbands and for wives (2) for both husbands and wives, there were no mediation effect (3) for both husbands and wives, financial strain was negatively associated with quality of life; and marital satisfaction was positively associated with quality of life. We discuss both the theoretical and practical implications of these findings.

Comparing emergency department versus high school-based recruitment for a hypertension research study with adult-youth dyads.

Dyads can be challenging to recruit for research studies, but detailed reporting on strategies employed to recruit adult-adolescent dyads is rare. We describe experiences recruiting adult-youth dyads for a hypertension education intervention comparing recruitment in an emergency department (ED) setting with a school-based community setting. We found more success in recruiting dyads through a school-based model that started with adolescent youth (19 dyads in 7 weeks with < 1 hour recruitment) compared to an ED-based model that started with adults (2 dyads in 17 weeks with 350 hours of recruitment). These findings can benefit future adult-youth dyad recruitment for research studies.

Associations between dyadic coping, marital satisfaction, and prenatal depression symptoms among couples with gestational diabetes mellitus.

AIMS/BACKGROUND: Coping with gestational diabetes mellitus (GDM) presents significant challenges for pregnant women and their partners, which may result in elevated prenatal depression symptoms. However, research has predominantly centred on pregnant women with GDM, with little involvement of their partners. To understand their dyadic interactions, it is imperative to involve GDM couples in the study. This study aims to examine the interplay between dyadic coping and prenatal depression symptoms among GDM couples and to explore the possible mediating role of marital satisfaction. DESIGN/METHOD: A cross-sectional study was conducted in Guangzhou, China. A total of 400 couples completed the Dyadic Coping Inventory, Locke-Wallace Marital Adjustment Scale, Edinburgh Postnatal Depression Scale, and sociodemographic data sheet. The actor-partner interdependence mediation model was utilised for dyadic data analysis. RESULTS: Overall, 13.0% of pregnant women with GDM and 8.3% of partners experienced elevated prenatal depression symptoms. Dyadic coping was directly or indirectly related to their own and partners' prenatal depression symptoms in GDM couples, with marital satisfaction acting as a mediator. Specifically, positive dyadic coping was associated with lower prenatal depression symptoms, while negative dyadic coping exhibited an opposite relationship. CONCLUSION: The prevalence of elevated prenatal depression symptoms was high in GDM couples. It is important to view pregnant women with GDM and their partners as a dyad of a transactional system in prenatal clinical care. Couple-centred interventions targeting to enhance positive dyadic coping and mitigate negative dyadic coping might be beneficial to prevent and alleviate prenatal depression symptoms.

Effects of home disease management strategies based on the dyadic illness management theory on elderly patients with chronic heart failure and informal caregivers' physical and psychological outcomes: protocol of a randomized controlled trial.

BACKGROUND: Currently, most elderly chronic heart failure (CHF) patients go home for rehabilitation after certain treatment in hospitals. However, the results of their rehabilitation at home are not satisfactory. According to studies, dyadic treatments can increase the efficiency of home rehabilitation, enhance both partners' quality of life, lessen the caregiver's load of care, and alleviate the strain of medical resources. Thus, the aim of our research is to design a study protocol that included elderly CHF patients and their informal caregivers as an intervention unit and to explore the impact of the protocol on their health and physical outcomes. METHODS: This is a prospective randomized controlled trial conducted in a triple-A hospital. In total, 80 elderly CHF patients and informal caregivers (80 dyads) will be recruited with informed consent. Based on the randomized numbers, they are divided into a control group (40 dyads) and an intervention group (40 dyads), subjects in the control group will receive usual care, and subjects in the intervention group will receive a home-based disease management program based on the Theory of Dyadic Illness Management on the basis of the control group. The duration of the intervention is 3 months, and the follow-up is 6 months. Data is collected at enrolment, 3 months after the intervention, and 3 months after the end of the intervention. The primary outcome is patients' quality of life and readmission. Secondary outcomes include patients' self-management behaviors, anxiety, and depression and caregivers' quality of life and care burden. DISCUSSION: This study focuses on whether this home-based disease management program can improve the quality of life of elderly patients with CHF, reduce the readmission rate, enhance their self-management capacity, reduce negative emotions, and reduce the burden of informal caregivers. It can provide a new perspective on home management and cardiac rehabilitation of heart failure disease in the elderly, as well as alleviate problems such as the burden of healthcare resources. TRIAL REGISTRATION: Chinese Clinical Trials Registry ChiCRT2300068026. Registered on 3 February 2023, manuscript Version: 1.0,  https://www.chictr.org.cn/ .

Extradyadic stress as a barrier to sexual activity in couples? A dyadic response surface analysis.

Sexuality is integral to most romantic relationships. Through stress spillover, however, factors such as individually experienced stress outside of the relationship (i.e., extradyadic stress) can negatively impact sexuality. In this study, we explored how a possible (mis)matching of both partners' levels of extradyadic stress is related to sexual activity and tested for gender differences. Analyzing 316 mixed-gender couples from Switzerland, we employed Dyadic Response Surface Analysis to assess how extradyadic stress is associated with sexual activity. Our results showed that extradyadic stress was positively linked to sexual activity for women (in general) and men (in the case of matching stress levels). As this result was surprising, we conducted additional exploratory analyses and split the measure of sexual activity into (1) exchange of affection and (2) eroticism (petting, oral sex, and intercourse) and controlled for age. Results from this second set of analyses showed that for women, matching stress levels were associated with higher exchange of affection, whereas men's exchange of affection was higher if men reported higher stress levels than women. Notably, after accounting for age, the link between stress and eroticism dissipated. Our findings suggest that exchange of affection may serve as a coping mechanism for stress, with gender influencing this dynamic. However, future research investigating stress and sexual activity should consider additional factors such as age, relationship satisfaction, stressor type, and stress severity.

'I'm ruined': Young people's and their mothers' experiences of living with, and receiving a diagnosis of, borderline personality disorder: An interpretative phenomenological analysis.

BACKGROUND: The adolescent borderline personality disorder (BPD) diagnosis has been widely debated for many years. Strikingly, young people's experiences of both receiving a diagnosis of BPD, and of living with BPD, are largely under-explored. The current study seeks to address these gaps in the literature in a multi-perspectival design utilising young people-parent dyads. METHODS: Young people (aged 16-18 years) with a diagnosis of BPD (n = 5) and their mothers (n = 5) were recruited from two NHS Community Mental Health Services in the West Midlands and participated in semi-structured interviews. Data were analysed using interpretative phenomenological analysis [IPA]. FINDINGS: Analysis identified two superordinate themes with five subthemes: (1) The "ugly" reality of living with BPD (providing a stark insight into what it is like to live with the unpredictable nature of experiences labelled as BPD), and (2) The diagnosis that dare not speak its name (highlighting the complexities of how the diagnosis itself is experienced by participants as a symbol of personal and permanent defectiveness and danger). DISCUSSION: Findings highlight a clear commonality of experience centred around the intensity of the young people's emotional distress and the accompanying pressure on parents to keep young people safe, both of which services must strive to do more to contain. Ultimately, the costs of receiving a BPD diagnosis appear to outweigh the benefits, and this paper adds support to calls for change in respect to how we conceptualise difficulties labelled as BPD and how we communicate about these difficulties, in order to avoid causing harm.

Emphasizing the Social in Social Emotion Regulation: A Call for Integration and Expansion.

The Future of Affective Science Special Issues illuminate where the field of Affective Science is headed in coming years, highlighting exciting new directions for research. Many of the articles in the issues emphasized the importance of studying emotion regulation, and specifically, social emotion regulation. This commentary draws on these articles to argue that future research needs to more concretely focus on the social aspects of social emotion regulation, which have been underexplored in affective science. Specifically, we discuss the importance of focusing on social goals, strategies and tactics, and outcomes relevant to social emotion regulation interactions, more closely considering these processes for all individuals involved. To do so, we draw on research from neighboring subdisciplines of psychology that have focused on the social aspects of interactions. Moreover, we underscore the need to better integrate components of the process model of social emotion regulation and approach empirical inquiry more holistically, in turn illuminating how piecemeal investigations of these processes might lead to an incomplete or incorrect understanding of social emotion regulation. We hope this commentary supplements the research in the special issues, further highlighting ways to advance the field.

Social and leisure engagement moderates the association between care partner distress and cognitive status of care recipients with dementia.

OBJECTIVES: Despite the established impact of care recipient cognitive impairment on care partner (CP) distress, limited quantitative research has explored how social and leisure engagement may moderate this relationship, offering a potential avenue for enhancing well-being in both care partners and recipients. The current study therefore examined the between- and within-dyad associations between cognitive impairment of persons with dementia (PwD) and their family CP's distress, and whether social and leisure activity moderated this relationship. METHODS: Data were utilized from dyads (PwD, n = 33, and their CPs, n = 34) engaged in the Voices in Motion project, a social-cognitive choral intervention for PwD and their family CPs. Measures indexing PwD cognitive status, CP distress, and PwD and CP social and leisure engagement were assessed using an intensive repeated-measures burst design, with multilevel models of change employed to disaggregate between- and within-person effects. RESULTS: Diminished cognitive functioning in PwD was associated with increased CP distress (p < 0.01) between-dyads; however, this relationship was not significant within-dyads. The between-dyad association was significantly moderated by the extent of social and leisure engagement of both CPs (p < .001) and PwD (p = .04). Follow-up simple slopes demonstrated that, at mean- and high-levels (+1SD) of social and leisure engagement for PwD and/or CP, increased PwD cognitive function significantly predicted lower CP distress. CONCLUSION: The significant moderating influence of social and leisure engagement of dyads underscores the protective role of such engagement for reducing care-related distress. Activity engagement for CPs and PwD may help modulate the deleterious impact of PwD cognitive impairment and attenuate CP distress. These findings highlight the potential for dyadic interventions that promote social and leisure activities to mitigate caregiving challenges and enhance quality of life for both CPs and PwD.

Effectiveness of the Dyadic Coping Intervention of Social Participation (DCISP) for stroke survivors: study protocol for a randomized controlled trial.

BACKGROUND: Enhancing social participation is not only the main goal of stroke survivors' community rehabilitation but also a protective factor affecting their physical and emotional health. The current state of stroke survivors' social participation is not encouraging due to the high disability incidence of stroke. Spouses may play a facilitating role in the social participation of patients by providing them with support and assistance. However, there remains a lack of evidence specifically regarding dyadic coping interventions of social participation for stroke survivors, and the intervention strategies are still underdeveloped without clear theoretical frameworks. Therefore, this proposed study aims to develop and evaluate the effectiveness of the Dyadic Coping Intervention of Social Participation (DCISP) for survivors of first-episode homebound stroke. METHODS: A single-blind (assessor-blinded), randomized controlled trial will be conducted to verify the effectiveness of DCISP. The randomized controlled trial will be preceded by a feasibility study (N = 20) of DCISP in stroke survivors. Stroke survivors will be randomly classified (1:1) into either a control (N = 50) or an experimental group (N = 50). In addition to routine care, participants in the experimental group will receive six 40 ~ 45 min sessions of guidance, once every two weeks. The primary outcome is social participation of stroke survivors, measured using Impact on Participation and Autonomy Questionnaire (IPA) and Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P), and the secondary outcomes will be measured by Knowledge Questionnaire for Stroke Patients (SPKQ), Stroke-specific Quality of Life Scale (SS-QOL), Dyadic Coping Inventory (DCI), Modified Rankin Scale (mRS) and Zarit Caregiver Burden Interview (ZBI-22). These will be measured at baseline(T0), during the intervention (T1 = 1 month), and after intervention completion (T2 = 3 months, T3 = 6 months). DISCUSSION: Findings from the study will provide evidence of the effects of DCISP on improving the social participation of first-episode homebound stroke survivors. The results of this study may support the implementation of survivor-spouse dyads care support in stroke survivors and provide a reference for clinical rehabilitation nursing practice, offering new insights into nursing interventions for stroke patients. TRIAL REGISTRATION: Chinese Clinical Trial Registry (ChiCTR) ChiCTR2400083072. Registered on 20 July 2023.

Perceived stress and prenatal depression symptoms among couples with gestational diabetes mellitus: The mediating role of dyadic coping.

PROBLEM: No studies have been conducted to examine the relationships between perceived stress, positive/negative dyadic coping, and prenatal depression symptoms in Chinese couples with gestational diabetes mellitus (GDM). BACKGROUND: GDM is a stressful event for pregnant women and their partners, which may result in clinically significant prenatal depression symptoms in couples. AIM: This study aims to examine the relationships and differences in perceived stress, positive/negative dyadic coping, and prenatal depression symptoms between Chinese pregnant women with GDM and their partners and to explore the mediating role of positive/negative dyadic coping. METHODS: A cross-sectional study was conducted in Guangzhou, China, from January to October 2021. 402 pairs of GDM couples completed the questionnaires, including the Edinburgh Postnatal Depression Scale, the Chinese version of the Dyadic Coping Inventory, and the Perceived Stress Scale. Dyadic data was analyzed using the actor-partner interdependence mediation model. FINDINGS: 37.6 % of pregnant women with GDM and 24.6 % of their partners experienced clinically significant prenatal depression symptoms. Depression symptoms in couples mutually influence each other. Perceived stress was directly or indirectly related to their and partners' prenatal depression symptoms in GDM couples, with negative dyadic coping acting as a mediator. Maternal negative dyadic coping was also a partner-mediator. DISCUSSION: The findings of the present study may provide healthcare professionals with a better understanding of the effect of the interpersonal interaction between the couples as a dyad on prenatal depression symptoms in Chinese context. CONCLUSION: There were intrapersonal and interpersonal associations among perceived stress, negative dyadic coping, and prenatal depression symptoms in pregnant women with GDM and their partners. It suggests a need for screening clinically significant prenatal depression symptoms and decreasing perceived stress and negative dyadic coping among couples with GDM with a focus on pregnant women with GDM.

Status quo and factors influencing dyadic disease appraisal in chronic heart failure based on latent profile analysis in Northern Sichuan Province, China.

PURPOSE: This study explored potential categories of dyadic disease appraisal differences among patients hospitalized with chronic heart failure (CHF) in China and analyzed the main factors influencing these categories. METHODS: A survey was conducted using various tools and scales, including the Chinese version of the Memorial Heart Failure Symptom Appraisal Scale, Heart failure self-care index scale, Social Support Rating Scale, Zarit burden interview, and Self-rating anxiety scale. The data was collected from patients who were hospitalized with CHF in the cardiology department of one of two tertiary hospitals in Nanchong City, China. The dyadic disease appraisal categories were identified using latent profile analysis (LPA). Multiple logistic regression analysis was also employed to analyze the factors influencing the formation of potential categories of differences in dyadic disease appraisal in CHF patients. RESULTS: A total of 262 pairs of hospitalized CHF patients and their caregivers participated in this study. The dyadic disease appraisal of CHF patients was potentially categorized as the "negative difference group" (28 individuals, 10.7%) and the "positive or convergence group" (234 persons, 89.3%). The results showed that the factors influencing the categorization of dyadic disease appraisal differences included the patient's social support, disease progression, and Caregivers anxiety level, burden, gender, educational attainment, and age (p < 0.05). CONCLUSION: The study findings demonstrated heterogeneity between the two groups of CHF patients in the dyadic disease appraisal. Therefore, it is necessary to focus on patients who have a brief duration of illness and limited social support. Specifically, it is important to prioritize support for female caregivers who are 65 years or older, have lower levels of educational attainment, and experience a significant burden and anxiety. Regular implementation of support person-bilateral co-management strategies can effectively reduce differences in how the disease is perceived and enhance the overall well-being of both caregivers and patients.

Associations between parents' adult attachment, Co-parenting and parent-child relationships: an actor-partner interdependence model.

This study used the Actor-Partner Interdependence Model to examine how parents' adult attachment influences their their own and the partners' co-parenting and parent-child relationships. Participants were from a cross-sectional sample of 1313 Chinese heterosexual married couples (fathers' Mage = 39.74, SD = 5.61; mothers' Mage = 37.55, SD = 5.04) whose biological children were pupils (Mage = 10.25, SD = 2.35). Results revealed that: (a) Couple members' actor effects from adult attachment avoidance to positive and negative co-parenting and parent-child closeness and conflict were found both significant; (b) The actor effects from adult attachment anxiety to negative co-parenting and parent-child conflict were found significant, whereas only partner effect from attachment avoidance to positive co-parenting and from attachment anxiety to parent-child conflict were significant. The results highlight the negative effects of parents' attachment avoidance and anxiety on their partners' parenting function.

Dyadic coping and related factors among couples with colorectal cancer: A latent profile analysis.

Objective: This study aimed to identify latent subgroups of dyadic coping (DC) among colorectal cancer (CRC) patients and their spousal caregivers, and to explore the factors associated with these subgroups. Methods: We conducted a cross-sectional study involving 268 pairs of CRC patients and their spousal caregivers. Participants completed the General Information Questionnaire, the Dyadic Coping Inventory, the Cancer-Related Communication Problems Scale, and the Fear of Progress Questionnaire-Short Form. Latent profile analysis (LPA) of DC among CRC couples was performed using Mplus 8.3. We compared couple illness communication, fear of cancer recurrence (FCR), and demographic characteristics between the identified subgroups and conducted ordinal logistic regression analysis to examine factors associated with these subgroups. Results: The 268 pairs of CRC patients and their spousal caregivers were classified into four subgroups based on their coping levels: low-DC group (12.3%), low common-DC group (7.1%), moderate-DC group (52.6%), and high-DC group (28.0%). Disease stage, couple illness communication, and spouse's FCR were significantly associated with the four subgroups. Conclusions: There is considerable variability in DC levels among CRC patients and their spousal caregivers. Patients with advanced disease stages, inadequate communication between spouses, and severe RCR exhibit lower levels of DC. These findings provide a theoretical basis for nursing personnel to develop personalized intervention strategies tailored to the characteristics of these subgroups.

Dyadic examination of parents' general psychological distress and coparenting in families with young children: The mediating role of couple satisfaction.

The current research explored the dyadic relationships between general psychological distress (GPD) and coparenting dimensions (cooperation, conflict, triangulation) through the mediation of couple satisfaction among parents with young children. The sample comprised 184 heterosexual couples (184 mothers, 184 fathers, age range from 25 to 57 years) married for 10 years on average. The actor-partner interdependence model (APIM) and APIM Mediation Model analyses demonstrated significant relationships between mothers' and fathers' GPD and all three of their own coparenting dimensions (direct actor effects), also through their own couple satisfaction (indirect actor-actor effects). Additionally, mothers' GPD had direct effects on fathers' coparenting cooperation (partner effect). Fathers' GPD had significant indirect effects on all dimensions of mothers' coparenting through mothers' couple satisfaction (partner-actor effects), plus on mothers' coparenting triangulation through fathers' couple satisfaction (actor-partner effect). Findings were in line with Family System Theory and consistent with prior research. Clinical implications were discussed.

Constructing the "Family Personality": Can Family Functioning Be Linked to Parent-Child Interpersonal Neural Synchronization?

INTRODUCTION: Early child development occurs within an interactive environment, initially dominated by parents or caregivers, and is heavily influenced by the dynamics of this social context. The current study probed the neurobiology of "family personality", or family functioning, in the context of parent-child dyadic interaction using a two-person neuroimaging modality. METHODS: One hundred and five parent-child dyads (child mean age 5 years 4 months) were recruited. Functional near-infrared spectroscopy (fNIRS) hyperscanning was employed to measure neural synchrony while dyads completed a mildly stressful interactive task. Family functioning was measured through the Family Adaptability and Cohesion Scale IV (FACES-IV). RESULTS: Synchrony during stress was significantly greater than synchrony during both baseline and recovery conditions for all dyads. A significant interaction between neural synchrony in each task condition and familial balanced flexibility was found, such that higher levels of balanced flexibility were associated with greater changes in frontal cortex neural synchrony as dyads progressed through the three task conditions. DISCUSSION: Parent-child dyads from families who display heightened levels of balanced flexibility are also more flexible in their engagement of neural synchrony when shifting between social conditions. This is one of the first studies to utilize a two-person imaging modality to explore the links between family functioning and interbrain synchrony between parents and their children.

Latent profile analysis of family adaptation in breast cancer patients-cross-sectional study.

When individuals face life pressure or significant family changes, individuals with better family adaptation can better survive the crisis. Although the influencing factors of family adaptation have been investigated, the application of potential profile analysis has yet to be found. This analytical approach can reveal different potential categories of family adaptation, providing new perspectives for theoretical development and interventions. This study used latent profile analysis to explore family adaptation levels in breast cancer patients and identify different latent categories, examining their characteristic differences. A cross-sectional study was conducted in Jinzhou, China, from July 2023 to March 2024. The questionnaire included Sociodemographic and clinical characteristics, Benefit Finding Scale (BFS), Dyadic Coping Scale (DCI), Chinese Perceived Stress Scales (PSS), and Family adaptability and cohesion evaluation scales (FACES). Mplus8.3 and SPSS26.0 software were used for data analysis. The latent profile analysis (LPA) method was used to fit the family adaptations of breast cancer patients. Three latent categories of family adaptation were identified: low-level family adaptation (21.5%), medium level family adaptation (47.8%), and high-level family adaptation (30.6%). All 14 items with high levels of family adaptation scored higher than the other two groups. In particular, out of all the categories, item 9, "The idea of educating children is sound," scored highest. Compared with the low-level group, the influential factors of family adaptation in the high-level group were BFS, DCI, PSS, relapse and personal monthly income; The factors influencing family adaptation at the middle level are DCI, BFS, breast cancer type, family history of breast cancer, and personal monthly income. Compared with the medium level group, PSS and DCI were the influential factors of family adaptation in the high-level group. Family adaptation in breast cancer patients can be divided into three categories: low-level, medium-level, and high-level. There were significant differences among different categories of family adaptation levels in "personal monthly income", "family history of breast cancer", "type of breast cancer", "recurrence", "dyadic coping", "benefit finding", and "perception stress".

The Seattle Amyotrophic Lateral Sclerosis (ALS) Patient Project Database: observational, longitudinal, dyadic characterization of people with ALS and their partners.

Introduction: The median survival time in ALS is approximately 3 years, but survival times range from less than a year to more than 10 years and much variance in disease course remains to be explained. As is true for physical outcomes, there is considerable variance in QOL, which is influenced by psychological health, coping, and social support, among other psychosocial factors. The Seattle ALS Patient Project Database (SALSPPD) provides a unique opportunity for researchers to address established and novel hypotheses about disease progression and QOL in ALS. Methods: The SALSPPD is a longitudinal dataset of people with ALS (n = 143) and their partners (spouses, significant others, or caregivers; n = 123) from clinics and community-based ALS support groups. Participants were interviewed in their homes every 3 months for up to 18 months between March 1987 and August 1989. Follow-up phone calls were completed in 1990, 1994, and 2008, primarily to ascertain disease outcomes. Results: The provided data dictionary includes details of the over 500 variables measured in the study, which have been subsetted into domain datasets. Domains address physical, psychological, social, and behavioral status on the person with ALS and their partners. Missing data were coded according to their mechanism. Data are available in two formats: The person-level (wide) databases and the time-level (long) databases. Discussion: The SALSPPD will provide a rich resource to scientists interested in the natural history of ALS, psychosocial effects on ALS outcomes and vice versa, and psychosocial and disease outcomes of treatments.

Posttraumatic stress symptoms in parents of children with newly diagnosed cancer: 1-year trajectories and relationship variables as predictors.

OBJECTIVE: The way in which parental posttraumatic stress symptoms (PTSS) unfold in the first year after a cancer diagnosis in their child is poorly understood. The aims of this study were to identify parental PTSS trajectories and to examine couple-related predictors (dyadic coping and we-disease appraisals), sociodemographic predictors (education and sex), and medical predictors (child's physical impairment) of trajectory membership. METHOD: A 1-year prospective study was conducted, and 157 parents of children newly diagnosed with cancer were assessed. PTSS was measured with the Posttraumatic Diagnostic Scale for DSM-5 (PDS-5) at 3-6 weeks (T1), 6 months (T2), and 12 months (T3) after the diagnosis. The trajectories were identified with Latent Class Growth Analysis, the predictors were explored with binomial logistic regression. RESULTS: Two distinct trajectories were found. The majority of parents (86.0%) followed a low PTSS trajectory, characterized by initially low scores that slightly decreased over 12 months. In contrast, 14.0% of parents displayed a stable, high PTSS trajectory. A high trajectory of child's physical impairment and low scores in parental dyadic coping were significantly associated with the likelihood of a high parental PTSS trajectory. CONCLUSIONS: The findings provide new insights into the critical period of the first year after a child's cancer diagnosis. While most parents display a resilient, low PTSS trajectory, a minority consistently experience high PTSS levels. Child's physical impairment and dyadic coping should be considered as predictors for early identification of vulnerable parents. Incorporating dyadic coping in parental support following a childhood cancer diagnosis could be beneficial for parental mental health.

Hope and relationship dynamics among couples faced with their child's cancer: A dyadic phenomenological interpretative analysis.

PURPOSE: The onset of paediatric cancer leads to changes in the functioning of the parental couple. The interactions and interdependence between partners affect their individual and dyadic adjustments. Hope can enable parents to cope with difficulties and alleviate their distress. The aim of this study is to explore how both partners experience their relationship dynamics and hope within the couple. METHOD: This qualitative study focused on 7 couples whose child was in remission from cancer; each parent was interviewed separately. The semi-structured interviews were subjected to interpretative phenomenological analysis. RESULTS: Three themes were found to characterise the experiences of couples faced with their child's cancer. "Captain and first mate" emphasises the gendered and hierarchical distribution of roles based on the analogy of a crew struggling against the threat of cancer. "The emotional compass" focuses on how emotions guide each partner's attempts to meet their own need for emotional expression and that of their partner. "In the same boat, with divergent hope sails" reflects the complex and diverse ways in which hope and forms of hope are expressed, perceived as a resource which is often precious, sometimes viewed as unthinkable because it reflects the violence associated with the despair of the situation and transferred from one parent to the other. DISCUSSION: These findings highlight the need to focus on the organisation of role, the interaction of emotional needs and the dynamics of hope within parental dyads to optimise the management of couples faced with their child's cancer.