Dataset Information

Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness.

ABSTRACT:

Objective

This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.

Participants and setting

A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.

Results

Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).

Conclusion

Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.

SUBMITTER: Ho AHY

PROVIDER: S-EPMC6887006 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Publications

Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness.

Ho Andy Hau Yan AHY Dutta Oindrila O Tan-Ho Geraldine G Choo Ping Ying PY Low Xinyi Casuarine XC Chong Poh Heng PH Ng Carolyn C Ganapathy Sashikumar S

BMJ open 20191119 11

<h4>Objective</h4>This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.<h4>Participan ...[more]

PMID: 31748309

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Project description:ImportanceA substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child's recovery.ObjectiveTo evaluate the efficacy of an acceptance and commitment therapy-based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents.Design, setting, and participantsThis study was a randomized clinical trial of an intervention for parents with elevated acute stress symptoms. It was a single-site study conducted in a tertiary pediatric hospital in Australia. Parents of children aged 0 to 18 years admitted for a life-threatening illness or injury to the oncology, cardiology, or pediatric intensive care departments were eligible. Participants were screened for eligibility within the first month after diagnosis or admission and then were randomized to the intervention group or the waiting list control group 4 to 10 months after diagnosis or admission. Recruitment commenced January 2014, and final postintervention follow-up was completed in February 2018. Data analysis was performed from July to September 2018.InterventionsTreatment was a psychological acceptance and commitment therapy-based group therapy program called Take a Breath, which consisted of a 6-session parent-mediated psychological intervention delivered via online videoconferences over the course of 8 weeks. Waiting list control participants received treatment as usual and were offered the intervention 3 months after randomization.Main outcomes and measuresThe primary outcome was PTSS, as measured by the Posttraumatic Stress Disorder Checklist-Version 5 (total score range, 0-80, with higher scores indicating greater symptom severity). The PTSS was measured both before and immediately after the intervention. Changes in psychological skills taught within the intervention were also evaluated, including acceptance, mindfulness, values-based living, and psychological flexibility.ResultsOf 1232 parents who were assessed for eligibility, 313 were randomized; 161 were allocated to the waiting list control group, and 152 were allocated to the intervention group. Of those allocated, 44 parents in the waiting list group and 37 in the intervention group completed the postintervention questionnaire and were analyzed (81 participants total; mean [SD] age, 37.17 [6.43] years). Sixty-five participants (80.2%) were women, 48 participants (59.3%) were married, and 40 participants (49.4%) lived in rural or regional areas, or in a different state. In addition, 24 parents (29.6%) were in the cardiology illness group, 32 parents (39.5%) were in the oncology group, and 25 parents (30.9%) were in the pediatric intensive care unit group. The intervention group demonstrated significantly greater improvements in PTSS compared with the waiting list group (Cohen d = 1.10; 95% CI, 0.61-1.59; P = .03). The mean Posttraumatic Stress Disorder Checklist-Version 5 scores decreased from 31.7 (95% CI, 27.0-36.4) to 26.2 (95% CI, 21.8-30.7) in the waiting list control group and from 23.3 (95% CI, 18.6-28.1) to 17.8 (95% CI, 13.8-21.8) in the intervention group.Conclusions and relevanceThe findings of this study support the use of acceptance and commitment therapy to reduce PTSS in parents of very ill children, regardless of diagnosis. These findings also suggest that a brief, group format using a videoconferencing platform can be used effectively to access hard-to-reach populations, particularly fathers and caregivers living in nonmetropolitan areas.Trial registrationAustralian New Zealand Clinical Trials Registry Identifier: ACTRN12611000090910.

Project description:ImportanceDespite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members.ObjectivesTo examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions.Design, setting, and participantsThis retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021.ExposuresHaving a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment.Main outcomesRates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level.ResultsThe study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85).Conclusions and relevanceIn this cohort study, mothers, fathers, sisters, and brothers who had a child or sibling with 1 of 4 types of LTCs had higher rates of health care encounters, diagnoses, and medication prescriptions compared with families who did not have a child with that condition. The findings suggest that family members of children with LTCs may experience poorer mental and physical health outcomes. Interventions for parents and siblings of children with LTCs that aim to safeguard their mental and physical well-being appear to be warranted.

Project description:PURPOSE:This study aimed to examine health-related quality of life (HRQoL) of children and their parents, 6 months after the child's admission to the Pediatric Intensive Care Unit (PICU). Associations between parents' reports regarding HRQoL of their child and of themselves were investigated, as well as associations between children's baseline variables and their parent-reported HRQoL outcomes. METHODS:This is a secondary analysis of cross-sectional data collected in a group of children who participated in the PEPaNIC trial. Six months after discharge from the PICU, parents of critically ill children completed the Infant-Toddler Quality of Life Questionnaire (ITQOL, for age 0-3 years) or the Child Health Questionnaire-Parent Form 50 (CHQ-PF50, for age 4-18 years), which are parallel questionnaires. Parents completed the Short Form Health Survey (SF-12) regarding their own HRQoL. Results were compared with normative data. RESULTS:At 6 months' follow-up, 86 children of the 1343 (6%) had died which resulted in 1257 eligible children. Parents of 576 surviving children (46%) completed the questionnaires. Children of responding parents had less often an acute reason for admission and differed in diagnosis compared with children of non-responders. PICU children scored lower on most ITQOL (n = 390) scales and CHQ-PF50 (n = 186) scales compared with normative data. Parents reported (n = 570) higher scores on the physical (p < 0.001) and lower scores on the mental SF-12 scale (p < 0.001) compared with normative data. Parents̕ mental HRQoL correlated with HRQoL they reported for their child (Pearson Correlations range 0.25-0.57, p < 0.001-0.002). Shorter length of stay, lower risk of mortality, younger age, and cardiac diagnosis were associated with higher parent-reported HRQoL outcomes for the child. CONCLUSIONS:Six months after PICU discharge, critically ill children have lower HRQoL compared with normative data. The mental component of HRQoL is impaired in parents and is associated with lower overall parent-reported HRQoL of their child.

Project description:BACKGROUND:Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS:Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS:Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS:MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

Project description:IMPORTANCE:Play is essential to children and provides opportunities to promote their health and well-being. Children living with life-threatening and life-limiting conditions experience deprivation in play. OBJECTIVE:To conduct a scoping review of studies that examined play of children with a life-threatening or life-limiting condition to explore their play characteristics and possible factors influencing their participation in play. DATA SOURCES:A search of literature published between 1990 and 2017 was conducted in the health, social care, and built-environment fields. The scoping review included multiple searches in electronic databases, a gray literature search, and manual searches of relevant journals and reference lists of included articles. STUDY SELECTION AND DATA COLLECTION:Defined criteria were used to select articles describing studies that examined the daily play of children ages 5-11 yr with life-threatening and life-limiting conditions; articles that focused on play as therapy or that used parents' accounts of a service were excluded. The identified articles were critically appraised with the Critical Appraisal Skills Programme and the Joanna Briggs Institute Critical Appraisal Tools. FINDINGS:Thirteen articles were reviewed. The findings indicate that children's play is influenced by their health conditions and play opportunities and by the limited availability of appropriate play equipment and spaces allowing play and social interaction. CONCLUSIONS AND RELEVANCE:Available appropriate play opportunities need to be maximized for children living with life-threatening and life-limiting conditions. This goal can be achieved by understanding and considering the needs of these children and by facilitating environmental enablers and limiting barriers. WHAT THIS ARTICLE ADDS:Promoting the participation in play of children who live with life-threatening and life-limiting conditions is important to their health and well-being and can be achieved by targeting the cultural, social, and physical environmental factors that shape the children's play.

Dataset Information

Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness.

Objective

Participants and setting

Results

Conclusion

Publications

Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness.

Similar Datasets

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