Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study.
Ontology highlight
ABSTRACT: Background
Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs.Objective and methods
We conducted a concurrent, cross-sectional mixed-methods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for children with LTI and healthy siblings with quantitative data, and describe parenting in terms of the process of prioritizing tasks and goals for all children in the family.Results
Participants included 31 parents of children with LTI who have healthy siblings and were admitted to a children's hospital. Qualitative interviews revealed how parents managed children's needs and their perceptions of the toll it takes. Quantitative data revealed that parents prioritized "making sure my child feels loved" highest for ill and healthy children. Other goals for healthy siblings focused on maintaining emotional connection and regularity within the family and for ill children focused on illness management. Mixed-methods analysis revealed that parents engaged in a process decision making and traded-off competing demands by considering needs which ultimately transformed the meaning of parenting.Discussion
Future research can further examine trade-offs and associated effects, how to support parent problem-solving and decision-making around trade-offs, and how to best offer social services alongside illness-directed care.
SUBMITTER: Mooney-Doyle K
PROVIDER: S-EPMC5797322 | biostudies-literature | 2018 Feb
REPOSITORIES: biostudies-literature
Publications
Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study.
Mooney-Doyle Kim K Deatrick Janet A JA Ulrich Connie M CM Meghani Salimah H SH Feudtner Chris C
Journal of palliative medicine 20171003 2
<h4>Background</h4>Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs.<h4>Objective and methods</h4>We conducted a concurrent, cross-sectional mixed-methods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for children with LTI and healthy siblings with quantitative data, and describe parenting in terms of the process of prio ...[more]
Similar Datasets
Project description:BackgroundSpirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals.AimWe explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care.DesignA mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318).Data sourcesPubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives.ResultsSixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support.ConclusionsAlthough studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.
| S-EPMC10548770 | biostudies-literature
Project description:BackgroundMusic therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement).MethodsEligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration.ResultsA total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes.ConclusionsQualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs.Systematic review pre-registrationPROSPERO [CRD42021244859].
| S-EPMC10898157 | biostudies-literature
Project description:This paper aims to explore how to help terminally ill patients and their families find meaning in their suffering from the logotherapeutic perspective, which is the essence of palliative care. For this purpose, this paper examines the main concepts and principles of logotherapy, and specific approaches based on the logotherapeutic perspective to help terminally ill patients and their families find meaning in life are presented. Emphasizing the will to meaning as the primary motive to explain human behaviors and based on its unique perspective of the human being, which is called the dimensional ontology, logotherapy considers the human being to consist of the body, the mind, and the spirit. The dimensional ontology implies that the human being "has" the body and the mind, but the human being "is" the spirit itself. Therefore, even though a human being can be sick physically or psychologically, Accordingly, it is essential to help these patients realize that they are not their illnesses, but just have them, and to rise above themselves to reach out toward something meaningful or someone to love; despite their suffering, they can still do something meaningful, even in a small way. Above all, the most important thing for these patients is to acknowledge that they have already lived a meaningful life and to believe that their meaningful work has been safely preserved in the past and nothing can take it from them, for as spiritual beings, their lives have been meaningful unconditionally.
| S-EPMC10332715 | biostudies-literature
Project description:OBJECTIVE:Mental illness has persistently been found to be a leading cause of death during pregnancy and the year after birth (the perinatal period). This study aims to explore barriers to detection, response and escalation of mental health-related life-threatening near miss events among women with perinatal mental illness. DESIGN:Qualitative study. PARTICIPANTS:Healthcare professionals (HCP) working in psychiatry, maternity and primary care (n=15) across community and hospital maternity and perinatal services within the UK. METHODS:In-depth semistructured interviews were conducted with a range of healthcare professionals working with women during the perinatal period. An iterative process of inductive and deductive thematic analysis, informed by systems theories of healthcare and the Three Delays model, was employed to analyse the data. RESULTS:Three overarching themes were identified: recognition of severity, communication of risk and service provision and access to treatment. Differing perspectives of mental illness severity influenced how life-threatening situations among women with perinatal mental illness were described, recognised and communicated between teams. Under-resourced mental health service provision, particularly within emergency and specialist perinatal mental health services, unclear thresholds for escalating care and poor infrastructure for sharing information all contributed to delays in a timely response to crisis situations. Reluctance to prescribe medication or admit women to psychiatric hospital, stigma and missed appointments created further delays. CONCLUSIONS:Response and escalation of care for life threatening near miss events among women with mental illness is strongly influenced by professional culture and understandings of mental illness embedded within different healthcare disciplines. Focusing on how differences in organisational and professional culture contribute to the recognition of severe mental illness and interdisciplinary communication may help facilitate clearer co-ordination between teams.
| S-EPMC6475171 | biostudies-other
Project description:BackgroundParity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all.AimTo synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness.DesignA mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches.Data sourcesTen electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary.ResultsOf the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness.ConclusionsImplications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.
| S-EPMC8637363 | biostudies-literature
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).
| S-EPMC6823967 | biostudies-literature
Project description:The pace-of-life hypothesis is a socio-psychological theory postulating that citizens of different cities transact the business of life at varying paces, and this pace is associated with a number of population level variables. Here we apply the pace-of-life hypothesis to a hospital context to empirically test the association between pace and patient and staff outcomes. As pressure on hospitals grow and pace increases to keep up with demand, is there empirical evidence of a trade-off between a rapid pace and poorer outcomes? We collected data from four large Australian hospitals, inviting all staff (clinical and non-clinical) to complete a survey, and conducted a series of observations of hospital staff's walking pace and transactional pace. From these data we constructed three measures of pace: staff perception of pace, transactional pace, and walking pace. Outcome measures included: hospital culture, perceived patient safety, and staff well-being outcomes of job satisfaction and burnout. Overall, participants reported experiencing a "fast-paced" "hurried" and "rapid" pace-of-life working in the Australian hospital sector. We found a significant difference in perceived pace across four hospital sites, similar to trends observed for transactional pace. This provides support that the pace-of-life hypothesis may apply to the hospital context. We tested associations between faster perceived pace, hospital culture, staff well-being and patient safety. Results revealed perceived faster pace significantly predicted negative perceptions of organizational culture, greater burnout and lower job satisfaction. However, perceived pace did not predict perceptions of patient safety. Different perceptions of hospital pace-of-life were found between different clinical settings and the type of care delivered; staff working in emergency departments reported significantly "faster-paced" work environments than staff working in palliative, aged care, or rehabilitation wards.
| S-EPMC8372908 | biostudies-literature
Project description:IntroductionDigital parenting interventions could be potentially cost-effective means for providing early child development services in low-income settings. This 5-month mixed-methods pilot study evaluated the feasibility of using Afinidata, a comprehensive Facebook Messenger-based digital parenting intervention in a remote rural setting in Latin America and explored necessary adaptations to local context.MethodsThe study was conducted in three provinces in the Cajamarca region, Peru, from February to July 2021. 180 mothers with children aged between 2 and 24 months and regular access to a smartphone were enrolled. Mothers were interviewed three times in-person. Selected mothers also participated in focus groups or in-depth qualitative interviews.ResultsDespite the rural and remote study site, 88% of local families with children between 0 and 24 months had access to internet and smartphones. Two months after baseline, 84% of mothers reported using the platform at least once, and of those, 87% rated it as useful to very useful. After 5 months, 42% of mothers were still active on the platform, with little variation between urban and rural settings. Modifications to the intervention focused on assisting mothers in navigating the platform independently and included adding a laminated booklet with general information on child development, sample activities and detailed instructions on how to self-enrol in case of lost phones.ConclusionsWe found high access to smartphones and the intervention was well received and used in very remote areas of Peru, suggesting that digital parenting interventions could be a promising path forward for supporting low-income families in remote parts of Latin America.
| S-EPMC10313948 | biostudies-literature
Project description:BackgroundTo investigate the impact of a serious illness communication skills training course on medical students' attitudes regarding clinical empathy, self-efficacy in empathic communication, and learning on different dimensions of empathy.MethodsA mixed-methods design was used. A blended learning Serious Illness Communication Skills Training (SI-CST) course was delivered to sixth-year medical students. Students (n=185) completed questionnaires with the 20-item Jefferson Scale of Empathy (JSE) and self-rated preparedness level for five empathic communication tasks at baseline (T1), six weeks (T2), and three-to-six months post-training (T3). Written reflections on key lessons learned were analyzed using inductive thematic analysis.ResultsTotal JSE scores significantly improved from T1 to T2 (111.4 vs 113.9, P=.01) and from T1 to T3 (111.4 vs 113.9, P=.01). There was an increase in Standing in Patient's Shoes subscale of the JSE with an effect size of 0.56 whereas the Perspective-Taking and Compassionate Care subscales showed no significant changes. Self-rated preparedness for all five empathic communication tasks significantly improved from T1 to T2 (P ≤ .001) and from T1 to T3 (P ≤ .001) with large effect sizes (1.09-1.41). Four key themes emerged from the qualitative analysis. They were appreciating the important role of empathy in clinical care (moral empathy), learning skills in detecting and understanding patient emotions (cognitive empathy), learning skills in responding to emotion with empathy (behavioral empathy), and appreciating that communication skills can be improved with continual practice and self-reflection.ConclusionsOur results revealed that SI-CST improved medical students' empathic attitudes and self-efficacy in empathic communication. Qualitative results found learning on the cognitive, behavioral and moral dimensions of empathy.
| S-EPMC9835381 | biostudies-literature
Project description:ImportanceLong-term prognosis informs clinical and personal decisions for older adults with late-life disability. However, many clinicians worry that telling patients their prognosis may cause harm.ObjectiveTo explore the safety of and reactions to prognosis communication in late-life disability.DesignParticipants estimated their own life expectancy and were then presented their calculated life expectancy using a validated prognostic index. We used a semi-structured interview guide to ask for their reactions. Qualitative data were analyzed using constant comparative analysis. Potential psychological and behavioral outcomes in response to receiving one's calculated prognosis were recorded and re-assessed 2-4 weeks later.SettingCommunity-dwelling older adults age 70+ residing in the San Francisco Bay Area.ParticipantsThirty five older adults with a median age of 80 requiring assistance with ≥1 Activity of Daily Living.ResultsSelf-estimates of life expectancy were similar to calculated results for 16 participants. 15 estimated their life expectancy to be longer than their calculated life expectancy by >2 years, while 4 shorter by >2 years. An overarching theme of, "fitting life expectancy into one's narrative" emerged from qualitative analysis. Discussing life expectancy led participants to express how they could alter their life expectancy (subtheme "locus of control"), how they saw their present health (subtheme "perceived health"), and their hopes and fears for the remaining years of their lives (subtheme "outlook on remaining years"). Feelings of anxiety and sadness in reaction to receiving calculated prognosis were rare.Conclusions and relevanceAbout half of the disabled older adults' self-estimates of prognosis were similar to calculated estimates. Evidence of sadness or anxiety was rare. These data suggest that in most cases, clinicians may offer to discuss prognosis.
| S-EPMC5681411 | biostudies-literature