Parent Caregivers Of Children Research Articles

Experiences and the psychosocial situation of parental caregivers of children with spinal muscular atrophy against the background of new treatment options: a qualitative interview study

BackgroundSpinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and a shortened life expectancy. Parents as primary caregivers are often physically and psychologically burdened. In recent years, new and promising treatment options have been approved, but it remains unclear if they have an impact on the psychosocial situation of affected families.ObjectivesThe aim of this study was to explore the views and experiences of parents as informal caregivers of children with SMA in the course of the disease against the background of new treatment options (Spinraza® or Zolgensma®).MethodsWe conducted qualitative interviews with 27 parents of children with SMA treated with Spinraza® and Zolgensma® from April to September 2020. The analysis was done using thematic analysis and reported according to the COREQ criteria.ResultsThe data analysis resulted in three main themes: a) caregiver burden and negative consequences for families, b) resources and protective aspects, c) psychosocial care needs. The results are discussed against the background of new treatment options and previous models of supportive care needs. Parental caregivers of affected children face multiple burdens in different stages of the child’s disease progression.ConclusionAlthough new treatment options for SMA showed observable effects for most parents, the main caregiver burden and reported symptoms were attributable to the overburdening care tasks. To unburden families, more screening for unmet needs, family-centered help services, professional caregivers, childcare, and sufficient financial support are needed.

A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at Home

IntroductionThe purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts. MethodA qualitative descriptive study was completed with 11 parental caregivers interviewed. ResultsUsing conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role. DiscussionNavigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.

614P Burden on parent caregivers of children with a muscle disease: a qualitative study

614P Burden on parent caregivers of children with a muscle disease: a qualitative study

Serial Multiple Mediation of Mastery and Sleep Quality in the Relationship between Caregiving Burden and Anxiety among Parental Caregivers of Children with Leukemia in China

Serial Multiple Mediation of Mastery and Sleep Quality in the Relationship between Caregiving Burden and Anxiety among Parental Caregivers of Children with Leukemia in China

Burdens and Difficulties Experienced by Parental Caregivers of Children and Adolescents with Idiopathic Nephrotic Syndrome in Mainland China: A Qualitative Study

Burdens and Difficulties Experienced by Parental Caregivers of Children and Adolescents with Idiopathic Nephrotic Syndrome in Mainland China: A Qualitative Study

Burdens and Difficulties Experienced by Parental Caregivers of Children and Adolescents with Idiopathic Nephrotic Syndrome in Mainland China: A Qualitative Study [Letter

Burdens and Difficulties Experienced by Parental Caregivers of Children and Adolescents with Idiopathic Nephrotic Syndrome in Mainland China: A Qualitative Study [Letter

Efficacy of a Resourcefulness Intervention to Enhance the Physical and Mental Health of Parents Caring for Technology-dependent Children at Home: A Randomized Controlled Trial

Parent caregivers of children who require lifesaving medical technology (e.g., mechanical ventilation, feeding tubes) must constantly maintain vigilance. Poor physical and psychological health can negatively impact their ability to do so. A two-arm randomized controlled trial was conducted with 197 parent caregivers of technology-dependent children (aged < 18 years) to test the efficacy of Resourcefulness Training1, a cognitive-behavioral intervention that teaches social (help-seeking) and personal (self-help) resourcefulness skills, in improving key outcomes including mental health-related quality of life (HRQOL), depressive cognitions and symptoms, perceived and physiological chronic stress, burden, and physical HRQOL at five-time points. Mixed-effects models using the intent-to-treat principle indicated statistically significant improvement with intervention participants at six and/or nine months postintervention for depressive cognitions, perceived stress, and physical HRQOL, controlling for covariates. Study findings support the efficacy of Resourcefulness Training to significantly decrease perceived stress and improve psychological/physical outcomes with these vulnerable caregivers.

Decisional conflict, caregiver mastery, and depression among Chinese parental caregivers of children with leukemia

BackgroundInformal caregivers of children with leukemia can be emotionally and psychiatrically vulnerable when facing difficult treatment decisions (e.g., chemotherapy, targeted therapy, radiation, transplantation). A common behavioral manifestation of decisional conflict is the verbalized expression of uncertainty about which medical treatment plan to take. The study aims to examine the associations between decisional conflict, mastery, and depressive symptoms among parental caregivers of children with leukemia in China. It explored the mediating role of mastery in the relationship.MethodsA cross-sectional survey design was adopted. A total of 386 parental caregivers were recruited, and 325 valid questionnaires remained. The mean age of caregivers was 37.7 years, and 61.5% caregivers were female. We used Question Format Decisional Conflict Scale to assess decisional conflict, Pearlin’s Mastery Scale to assess mastery, and Center for Epidemiological Studies Depression 10 to assess depressive symptoms. We used mediation analyses to test the mediating effect of mastery.ResultsThe total score of decisional conflict scale, along with its dimensions of uncertainty, support, and effective decision were found negatively associated with depressive symptoms. In contrast, the dimension of information and value were not significantly associated with depressive symptoms. Mediation analyses demonstrated the direct effects of overall decisional conflict and uncertainly were fully mediated by mastery, while the direct effect of support and effective decision were partially mediated.ConclusionsEfforts should be made to alleviate parental caregivers’ decisional conflict and enhance sense of mastery. Particular attention should be paid to the psycho-social support to relieve uncertainties and ineffectiveness in decision making.

Evaluation of a Secure Messaging System in the Care of Children With Medical Complexity: Mixed Methods Study.

The Connecting2gether (C2) platform is a web and mobile-based information-sharing tool that aims to improve care for children with medical complexity and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child's care team members (CTMs) in a timely manner. The objectives of this study were to (1) evaluate the use of a secure messaging system, (2) examine and compare the content of messages to email and phone calls, and (3) explore PCs' and CTMs' perceptions and experiences using secure messaging as a method of communication. This is a substudy of a larger feasibility evaluation of the C2 platform. PCs of children with medical complexity were recruited from a tertiary-level complex care program to use the C2 platform for 6 months. PCs could invite CTMs involved in their child's care to register on the platform. Messages were extracted from C2, and phone and email data were extracted from electronic medical records. Quantitative data from the use of C2 were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages and phone and email communication. Semistructured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis. A total of 36 PCs and 66 CTMs registered on the C2 platform. A total of 1861 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. Of all the C2 messages, 85.45% (1257/1471) were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and nonmedical aspects of the child's life. Four themes emerged from the platform user interviews related to C2 messaging: (1) connection to the care team, (2) efficient communication, (3) clinical uses of secure messaging, and (4) barriers to use. Overall, our study provides valuable insight into the benefits of secure messaging in the care of children with medical complexity. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from health care providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child's health care team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reducing the associated burden of care coordination and ultimately enhancing the experience of care delivery. Future directions include the evaluation of secure messaging when integrated into electronic medical records, as this has the potential to work well with CTM workflow, reduce redundancy, and allow for new features of secure messaging.

Oral health status and quality of life of the parental caregivers of children with Down syndrome: A case-control study.

The aim of this study was to investigate the oral health status and quality of life (QOL) of the parental caregivers of individuals with Down syndrome (DS), and to evaluate whether there is an association between these variables. The sample of this cross-sectional study was composed by parental caregivers of children with DS (CCDS) and parental caregivers of children without DS (CNDSC). Oral examination was undertaken and a questionnaire was given to participants. QOL was evaluated by WHOQOL-Bref. CCDS presented a higher number of dental prosthesis users and higher gingival bleeding index compared to CNDSC. When oral health was associated with QOL, the use of dental prosthesis was associated with physical domain and the variables having chronic disease and family income were associated with the social domain for both caregivers. The results suggest that caregivers of children with DS have similar oral health and QOL compared to caregivers of children without DS. In both caregivers, oral health status is associated with QOL.

Caregiving of children with Down syndrome: impact on quality of life, stress, mental and oral health.

Parental caregivers of children with Down Syndrome (DS) have a greater burden of daily activities that may affect their health. The aim of this exploratory study was to evaluate the impact of caregiving of children with Down syndrome on parenting quality of life, stress, mental and oral health. Fifty-four parental caregivers of children with DS and 51 parents of children without physical or mental disabilities participated of this study. All participants were clinically examined to evaluate the presence of dental caries, gingival conditions and answered a sociodemographic questionnaire. Depression, anxiety, quality of life and coping strategies were assessed using specific instruments. Hair cortisol level was assessed as biological marker of chronic stress. Psychological and quality of life parameters were similar between the groups of caregivers (p>.05). Caregivers of children with DS were older (48.6vs. 41.5, p<.001), had longer caregiving period (>10 vs<10 years, p=.003), presented higher gingival bleeding index (6.1vs. 4.7, p=.014) and higher cortisol levels (55.9vs. 38.4, p=.07) as compared with parents of children without disabilities. Sociodemographic data has no influence on cortisol levels (p>.05). These findings suggest that the caregiving of children with DS has an impact on parenting oral health and stress.

Characterising common challenges faced by parental caregivers of children with type 1 diabetes mellitus in mainland China: a qualitative study

ObjectivesThe mental state of parental caregivers affects outcomes in children with type 1 diabetes mellitus (T1DM). This study aimed to qualitatively examine perception of common challenges among parental caregivers of...

Resourcefulness Intervention Efficacy for Parent Caregivers of Technology-Dependent Children: A Randomized Trial.

Parent caregivers of children who require lifesaving technology (e.g., mechanical ventilation, feeding tubes) must maintain a high level of vigilance 24/7. A two-arm randomized controlled trial tested the efficacy of a resourcefulness intervention on parents' mental/physical health and family functioning at four time points over six months. Participants (n = 93) cared for their technology-dependent children <18 years at home. The intervention arm received teaching on social (help-seeking), personal (self-help) resourcefulness skills; access to the intervention video and skill application video-vignettes; four weeks of skills reinforcement using daily logs; four weekly phone contacts; and booster sessions at two- and four-month postenrollment. The attention control arm received phone contact at identical time points plus the current standard of care. Statistically significant improvement was noted; fewer depressive cognitions and improved physical health for the intervention participants than attention control participants over time after controlling for covariates. The findings support the resourcefulness intervention efficacy.

The Relationship Between Self-Compassion, Concern for Others, and Parental Burnout in Child's Chronic Care Management.

ObjectivesParental burnout is a construct that reflects the exhaustion and emotional distancing of parents from their children due to the growing demands of caring for them. Research has pointed to a heightened risk for parental burnout among parents of children with special needs. Additional research has indicated that parents’ personality traits and relational dynamics serve as resiliency factors regarding parental burnout.MethodsIn the present study, 91 primary parental caregivers of children receiving ongoing treatment at a pediatric ambulatory care unit were recruited. A theoretical model proposing the specific ways in which self-compassion and concern for others complement each other in predicting parental burnout was examined. In this model, the relationships between self-compassion, concern for others, and burnout respectively are mediated by different basic psychological needs, detailed in self-determination theory. Participants completed various questionnaires measuring these constructs. Regression and mediation analyses were used to examine our hypotheses.ResultsResults indicated that self-compassion and concern for others predicted levels of parental burnout. The covariance between concern for others and burnout was mediated by the psychological need of relatedness.ConclusionsThe findings support the extension of a three-layered conceptual model of (a) self-compassion and concern for others, (b) psychological needs, and (c) burnout. The present study highlights self-compassion and concern for others as potential resilience factors regarding the risk of burnout in parental caregiving. These findings point to promising avenues for burnout prevention and preemptive facilitation of parental caregiving.Supplementary InformationThe online version contains supplementary material available at 10.1007/s12671-021-01752-z.

The Parental Experience of Caring for a Child With Pain and Irritability of Unknown Origin

Background and ObjectiveApproximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental caregivers and families. The primary objective of this study was to understand the parental caregiver experience of caring for a child with SNI who experiences persistent PIUO. MethodsWe conducted a qualitative study using semi-structured interviews to explore the experience of parental caregivers of children with SNI. Interview guide questions focused on exploring pain behaviours, the diagnostic process, pharmacological and non-pharmacological management, healthcare-team support, discussion surrounding irritability, and family impact. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed by 2 independent reviewers using thematic analysis. Results15 parental caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed 3 major themes: 1) Variations in Clinical Care for PIUO; 2) The Experience and Challenges of Living with PIUO); 3) Managing the Impact of PIUO on Parental Well Being. Interviews demonstrated that parent and child can be viewed as a dyad, in which the child's experience is inherently linked to the parental experience. ConclusionParental caregivers described caring for a child with persistent PIUO as physically and emotionally exhausting, and negatively impacting family quality of life. Interviews highlighted avenues of future exploration for clinical care, including both enhanced management pathways for children and supportive resources for education and coping for parents.

DRAVET ENGAGE. Parent caregivers of children with Dravet syndrome: Perspectives, needs, and opportunities for clinical research

Dravet syndrome (DS) is an intractable developmental and epileptic encephalopathy significantly impacting affected children and their families. A novel, one-time, adeno-associated virus (AAV)-mediated gene regulation therapy was designed to treat the underlying cause of DS, potentially improving the full spectrum of DS manifestations. To ensure the first-in-human clinical trial addresses meaningful outcomes for patients and families, we examined their perspectives, priorities, goals, and desired outcomes in the design phase through a mixed methods approach (quantitative and qualitative). We conducted a non-identifiable parent caregiver survey, shared through a patient advocacy organization (n = 36 parents; children age ≤6 years). Parents were also engaged via three group discussions (n = 10; children age 2–20 years) and optional follow-up in-depth individual interviews (n = 6). Qualitative data analysis followed an inductive interpretive process, and qualitative researchers conducted a thematic analysis with a narrative approach. Survey results revealed most children (94%) were diagnosed by age 1, with onset of seizures at mean age 6.2 months and other DS manifestations before 2 years. The most desired disease aspects to address with potential new disease-modifying therapies were severe seizures (ranked by 92% of caregivers) and communication issues (development, expressive, receptive; 72–83%). Qualitative results showed the need for trial outcomes that recognize the impact of DS on the whole family. Parents eventually hope for trials including children of all ages and were both excited about the potential positive impact of a one-time disease-modifying therapy and mindful of potential long-term implications. Participants reflected on the details and risks of a clinical trial design (e.g., sham procedures) and described the different factors that relate to their decision to participate in a trial. Their main aspirations were to stop neurodevelopmental stagnation, to reduce seizures, and to reduce the impact on their families' wellbeing. To our knowledge, this is the first study within a patient-oriented research framework that specifically explored parents’ needs and perceptions regarding clinical trials of a potential disease-modifying therapy for children with a severe, developmental disease, such as DS.

Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal.

The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters. The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed. Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner-strengthening, recognition of parental skills, and promotion of self-efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope. To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope-based intervention to provide an evidence base from which to enhance the well-being of parental caregivers of children who have CCCs.

Exploring opportunities for holistic family care of parental caregivers of children with life-threatening or life-limiting illnesses

Life-threatening and life-limiting illnesses in children have profound implications for all family members, many of whom experience unmet health and support needs. Guided by literature on family-centered care and an Interpretive Description methodology, qualitative focus group interviews were conducted with 18 parental caregivers and health care and support providers to explore family experiences and identify care and support needs across the illness trajectory. Data analysis resulted in three themes related to parental participation in children’s medical care, parental and familial psychological well-being, and social support needs. These inter-related themes reflect the complex nature of family life with childhood illness, highlighting families’ holistic needs and how children’s physical and psychological care is intertwined with the psychological and social well-being of the family system. Additionally, the findings revealed the significance of communication to parental caregivers’ hope, coping, and well-being. The findings add depth to existing literature, and identify opportunities for addressing families’ unmet needs, with specific attention to the role that social workers can play in facilitating family-centred care to promote effective support of parental caregivers. As such, the findings emphasize the important contributions that social workers can make within health care teams and in educational settings to optimize parents’ ability to care for ill children while maintaining family functioning and well-being, and as advocates for social and policy change.

Depression, anxiety and treatment satisfaction in the parents of children on antiretroviral therapy in South Africa

ABSTRACT Parents of children living with HIV are at increased risk of emotional distress, with negative implications for both their health outcomes. There is limited data on depression and anxiety symptoms in the biological parents as caregivers of children on antiretroviral therapy (ART) in South Africa. We investigated the prevalence and correlates associated with depressive and anxiety symptoms in 200 biological caregiving parents of children on ART at a public hospital in KwaZulu-Natal Province, South Africa. Data were obtained from the Patient Health Questionnaire (PHQ-9) for depressive symptoms and the Generalized Anxiety Depression (GAD-7) for anxiety symptoms, along with sociodemographic questionnaire. Most of the parent caregivers assessed were female (n = 190, 95%), younger than 40 years (n = 151, 75.5%), single (n = 173, 86.5%), unemployed (n = 156, 78%) and HIV+ (n = 183, 91.9%). Sixty-five (32.5%) parents screened positive for depression, 37 (18.5%) for anxiety and 31 (n = 31, 15.5%) for both disorders (i.e. depression/anxiety comorbidity). There were significant associations between death of a child to HIV (aOR = 4.66, 95% CI: 1.33–16.28) with depression/anxiety comorbidity as well as with treatment dissatisfaction (aOR = 13.98, CI: 2.09–93.66), but not with other socio-demographic factors. The high prevalence of depression and anxiety amongst the parent caregivers of children living with HIV suggests the need for mental health screening and care among parents of children attending pediatric HIV services, and particularly for those with history of children lost to HIV.

102 Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments: A Qualitative Study

Abstract Introduction/Background Pain and irritability of unknown origin (PIUO) is reported to effect 73% of children with severe neurological impairments (SNI), and is a source of stress for children and families alike. Currently, there is no consensus among clinicians on how to manage PIUO and it is often difficult to determine the source of pain. Lacking an explanation for the source leaves clinicians unable to effectively treat the pain and increases a caregiver’s obstacles in providing care. Limited research exists on the effect of PIUO on children with SNI and their families. Objectives To explore and characterize the overall experience of PIUO for children with SNI and their families. Design/Methods Semi-structured interviews were conducted with parental caregivers of children with SNI who experience PIUO and are followed by the Complex Care Program at SickKids. Interview guide topics included pain expression and management, healthcare-team support and family coping. Interviews were conducted until saturation was reached. Interviews were audio-recorded, transcribed verbatim, coded and analyzed by two independent reviewers using an inductive six-step thematic analysis process on NVivo software. Results Fifteen caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed two major themes and associated subthemes (in parentheses): 1) Day-to-day life with PIUO (pain expression and frequency, management, and quality of life) and, 2) Areas for improvement (diagnostic process, resources and support, healthcare-team interactions). Characterizing the PIUO experience is an important area of research as findings can be used to guide clinical teams in providing holistic family-centered care to children with SNI. The findings support the need for clinical innovation by adjusting practice guidelines through the creation and implementation of an integrated clinical pathway to identify treatable causes of pain and irritability in children with SNI. Conclusion Diagnostic tests for PIUO are often inconclusive and stressful for patient-families. Limited pharmacological and non-pharmacological treatments exist for PIUO. Parental caregivers describe the experience as emotionally challenging and requested support for coping. Future research should focus on interventions for PIUO in children with SNI and reducing caregiver stress and burden.