Family Caregivers Of Children Research Articles

Effect of Nursing Intervention Program on Psychosocial Problems among Family Caregivers of Children with Autism Spectrum Disorder

Effect of Nursing Intervention Program on Psychosocial Problems among Family Caregivers of Children with Autism Spectrum Disorder

Perceived Discrimination among Caregivers of Children with Disabilities in China: Unraveling the Effects of Social Determinants

PurposeAlthough discrimination has gained increasing attention in research and practice intervention for family caregivers of children with disabilities, little is known about the social determinants that associate with the perceived discrimination among caregivers, especially in non-Western contexts. This study aims to examine the socio-familial and child-level determinants of perceived discrimination among family caregivers of children with disabilities in China. MethodThis study drew from a population-based cross-sectional survey in Shenzhen, China. Proportional quota sampling was conducted to get data from 2,500 family caregivers of children with disabilities in rehabilitation service centres (response rate = 94.9%, n=2,373), accounting for 25% of the total population of children with disabilities receiving service in Shenzhen. Latent profile analysis was conducted to categorize three perceived discrimination groups among caregivers (i.e., severe perceived discrimination group, moderate perceived discrimination group, and low perceived discrimination group). The multinomial logistic regression models were conducted to test the association between these social determinants and perceived discrimination. ResultsMost caregivers (82.9%) reported moderate or severe levels of perceived discrimination. Caregivers of children with moderate and severe impairments and children with mental and multiple disabilities were more vulnerable to perceiving severe social discrimination. Socio-familial characteristics, particularly the intersectionality between gender and employment, influence caregivers’ perceived discrimination. ConclusionCaregivers of children with disabilities experience pervasive social discrimination in contemporary urban China. Our study demonstrates that the social construction of disablism and the affiliate discrimination against family caregivers of children with disabilities is complex and multidimensional and depends upon the children’s disability and the caregivers’ socio-demographic characteristics.

Caring for the caregivers: A cross-sectional study of the burden experienced by family caregivers of children with cancer in South Gujarat

Caring for the caregivers: A cross-sectional study of the burden experienced by family caregivers of children with cancer in South Gujarat

Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study

BackgroundGlobally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID’s physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa.MethodsThis qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers.ResultsThe findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services.ConclusionsGiven the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.

Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU.

Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their child's PICU care to explore ways parents make meaning in relation to these stressors. This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents' psychosocial well-being around the time of their child's PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week. Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4-11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36-42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child. Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI.

Family Caregivers of Children With Medical Complexity: Changes in Health-Related Quality of Life and Experiences of Care Coordination

ObjectiveExamine the longitudinal association between family experiences of care coordination (FECC) and health-related quality of life (HR-QOL) for family caregivers of children with medical complexity (CMC). MethodsA longitudinal survey of family caregivers of CMC was completed between July 2018 and June 2020. Baseline data were collected at initial contact with a regional complex care center; follow-up data were collected 12 to 16 months later. Assessed receipt of care coordination and caregiver HR-QOL via FECC questionnaire and Center for Disease Control’s HR-QOL-14 measure, respectively. Baseline and follow-up results were compared via McNemar’s and Wilcoxon signed-rank tests. Relationships between changes in FECC and changes in HR-QOL were examined using multivariable logistic regression. ResultsOf 185 eligible, 136 caregivers enrolled and completed baseline surveys (74%) and 103 (76% initial sample) follow-up surveys. Caregivers reported significant improvements in 8 of 9 FECC measures after 1 year of care within a complex care center (all P < .05). In contrast, caregiver HR-QOL (general health status, unhealthy days, symptom days) remained stable over the study period (all P > .05) except for monthly days of poor sleep (baseline vs follow-up median; 16 vs 15 [P = .05]). At both timepoints, >20% participants rated their general health status as fair-to-poor, and >50% reported frequent poor sleep and fatigue. No significant associations were observed between changes in FECC and changes in HR-QOL. ConclusionsAfter receiving 1 year of care through a complex care center, CMC family caregivers report improvement in care coordination but not in HR-QOL. Caregivers’ continued mentally unhealthy days and negative mental symptom days highlight the need for a directed intervention.

Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment.

Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences. To examine how parents and family caregivers of children with SNI navigate stress during PICU admissions. This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated. Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents. Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times.

Effect of counselling intervention on stress and expressed emotions among family caregivers of children with autism.

Parenting a child with autism represents an extraordinary challenge for families, resulting in prominent levels of stress and burden that subsequently affect their expressed emotions. This study aimed to evaluate the effect of counseling intervention on stress and expressed emotions among family caregivers of children with autism. The research used a pre-post interventional design, to evaluate 40 family caregivers of children with autism. The interviewing questionnaire assessed socio-demographic data, expressed emotions, and parenting stress, revealing that 57.5% of the evaluated family caregivers had severe stress pre-counseling, compared to 25% post-counseling intervention. Additionally, 80% of them had elevated levels of expressed emotions pre-counseling, compared to 32.5% during the post-counseling intervention. Most family caregivers of children with autism experienced significant levels of expressed emotions, and over half of them had severe levels of stress. However, these levels decreased following the implementation of the counseling interventions. Furthermore, there were highly statistically significant correlations between the total levels of expressed emotions and total stress levels among family caregivers before and after the implementation of the counseling intervention.

Anxiety, Depression, Quality of Life, and Family Support Among Family Caregivers of Children with Disabilities.

To investigate the family support, anxiety, depression, health-related quality of life (HRQoL), and their associations among parents and grandparents of children with disabilities. This is a cross-sectional study and a total of 327 family caregivers were included. Chi-square test, Mann-Whitney U-test, and two independent t-test were used to identify the intergenerational differences in sociodemographic characteristics, received family support, anxiety, depression, and HRQoL. Eight generalized linear models were developed to examine the associations in both generations. Parents and grandparents were most in need of rehabilitation and financial support, but both populations received the least amount of financial support. 33.6% and 36.1% of family caregivers had the risk of anxiety and depression and found no significant intergenerational differences. As for HRQoL, intergenerational differences were found in the physical component score, but not found in the mental component score. Among parents, childcare support of respite care and household tasks assistance was negatively associated with their depression (p<0.05), professional support of appropriate surgery for children (p<0.05) and psychological support from professional psychologists (p<0.01) were negatively associated with their anxiety and depression, psychological support from relatives and friends was negatively associated with their depression (p<0.05) whereas was positively associated with their mental HRQoL (p<0.01). As for grandparents, financial support for daily living expenses was negatively associated with depression (p<0.05), and psychological support from families was negatively associated with depression (p<0.05) whereas was positively associated with mental HRQoL (p<0.05). However, no relationship was found between family support and anxiety among grandparents. Notably, no association was found between family support and physical HRQoL among both populations. Both parents and grandparents had high risks of anxiety, depression and low levels of mental HRQoL. To efficiently improve psychological health, care providers and policymakers may consider intergenerational differences and provide targeted family support.

Innovative communication approaches for initializing pediatric palliative care: perspectives of family caregivers and treating specialists

BackgroundEffective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation.MethodsThis was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis.ResultsIn total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report.ConclusionsOur study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital.

Depression and Associated Factors among Family Caregivers of Children with Disabilities: Analysis of Intergenerational Differences.

Family caregivers of children with disabilities might face high risks of depression, whereas the existing literature focused more on parents neglecting grandparents. This study investigated 380 parents and 108 grandparents of children with disabilities to identify depression and associated factors. Descriptive statistics, Chi-square test, Mann-Whitney U test, and multivariable logistic regression were performed to describe the participants' characteristics and risks of depression and identify significant factors. Results showed that parents (35.5%) had higher risks of depression than grandparents (32.4%), but statistical differences were not found. Children's sleep problems (AOR = 1.751, 95%CI = 1.019, 3.008), harmonious family relationships (AOR = 0.694, 95%CI = 0.569, 0.846), and better barrier-free construction (AOR = 0.742, 95%CI = 0.568, 0.970) were significantly associated with depression among parents. As for grandparents, higher education (AOR = 4.108, 95%CI = 1.526, 11.057) and caring for children who experience frequent mood swings (AOR = 2.242, 95%CI = 1.161, 4.329) were associated with higher risks of depression. Further, house ownership (AOR = 0.167, 95%CI = 0.031, 0.887), higher family cohesion (AOR = 0.545, 95%CI = 0.297, 1.000), and better barrier-free construction (AOR = 0.401, 95%CI = 0.185, 0.869) were associated with lower odds of depression. Therefore, both parents and grandparents of children with disabilities had high risks of depression and thus required urgent attention. Healthcare providers and policymakers should develop and implement interventions considering intergenerational differences to reach optimal efficiency.

Lack of freedom predicted poor self-reported health among family caregivers of children with disabilities during the COVID-19 pandemic in Europe.

We aim to assess the effects of the COVID-19 pandemic on self-reported health and quality of life among family caregivers of children with disabilities across Europe. Cross-sectional study. Data from the survey by the Eurocarers and IRCCS-INRCA were used. The data were collected between November 2020 and March 2021 from 16 European countries. Data analysis was done using regression analysis to identify family caregivers' self-reported health and well-being predictors. This study included 289 caregivers. The mean age of children was 12 years. Their family caregiver's mean age was 44, and they were mainly women. Experience of lack of freedom predicted family caregivers' poor self-reported health and quality of life. Children's interrupted health and social services also predicted family caregivers' poor self-reported mental well-being. Longitudinal evidence on the pandemic's effects and a diverse view of family caregivers of children with disabilities are needed to plan effective post-pandemic health services and nursing practice. No Patient or Public Contribution.

Factors associated with caregiver burden among family caregivers of children with cerebral palsy: a systematic review

ObjectivesTo identify caregiver and children factors associated with caregiver burden on primary caregivers of children with cerebral palsy (CP).DesignSystematic reviewData sourcesSeven electronic databases, including PubMed, Cochrane Library, Scopus, PsycINFO, Web...

Medication management strategies by family caregivers of children with special healthcare needs.

Little is known about the strategies utilized by family caregivers managing medications for their children with special healthcare needs (CSHCN), those who require higher than normal care due to their multifaceted healthcare needs. Medication management strategies are a set of methods or techniques developed or adapted by caregivers to overcome medication-related barriers and ensure successful therapeutic outcomes. An in-depth understanding of such strategies is a requisite first step toward developing interventions that support caregiver-mediated medication management. We conducted semi-structured qualitative interviews with 20 family caregivers of CSHCN who were recruited as part of a community engaged research between PurdueUniversityCollegeofPharmacy and IndianaFamilytoFamily. Interviews were conducted through zoom and audio recorded. Each participant was provided with a $50 honorarium. Interviews were professionally transcribed and content analyzed to generate categories of medication management strategies. Five overarching categories of medication management strategies were identified. These included (1) medications, supplies and equipment inventory management; (2) organizing and tracking medications, supplies and equipment; (3) medication-related communication, coordination and engagement; (4) medication administration and (5) researching and learning about medications. Within each category, caregivers developed or adapted specific strategies to overcome barriers in diverse care contexts (e.g., when interacting with healthcare systems, school staff or other members of their household). These findings can inform current clinical practice through improved awareness of different strategies employed by caregivers and lay a foundation to develop interventions designed to support caregiver mediated medication management.

Resilience measurement scale in family caregivers of children with cancer: Multidimensional item response theory modeling.

Currently, information about the psychometric properties of the Resilience Measurement Scale (RESI-M) in family caregivers of children with cancer according to item response theory (IRT) is not available; this information could complement and confirm the findings available from classical test theory (CTT). The objective of this study was to test the five-factor structure of the RESI-M using a full information confirmatory multidimensional IRT graded response model and to estimate the multidimensional item-level parameters of discrimination (MDISC) and difficulty (MDIFF) from the RESI-M scale to investigate its construct validity and level of measurement error. An observational study was carried out, which included a sample of 633 primary caregivers of children with cancer, who were recruited through nonprobabilistic sampling. The caregivers responded to a battery of tests that included a sociodemographic variables questionnaire, the RESI-M, and measures of depression, quality of life, anxiety, and caregiver burden to explore convergent and divergent validity. The main findings confirmed a five-factor structure of the RESI-M scale, with RMSEA = 0.078 (95% CI: 0.075, 0.080), TLI = 0.90, and CFI = 0.91. The estimation of the MDISC and MDIFF parameters indicated different values for each item, showing that all the items contribute differentially to the measurement of the dimensions of resilience. That regardless of the measurement approach (IRT or CTT), the five-factor model of the RESI-M is valid at the theoretical, empirical, and methodological levels.

Assessment of Health-Related Quality of Life and its Associated Factors in Family Caregivers of Children with Lymphoma at a National Hospital in Central Malawi

International Journal of Medicine and Public Health,2022,12,4,191-197.DOI:10.5530/ijmedph.2022.4.35Published:January 2023Type:Original ArticleAssessment of Health-Related Quality of Life and its Associated Factors in Family Caregivers of Children with Lymphoma at a National Hospital in Central MalawiPatrick GMC Phiri, Alfred Owino Odongo, and John G Kariuki Patrick GMC Phiri1,2,*, Alfred Owino Odongo1, John G Kariuki1 1School of Public Health, Mount Kenya University, Thika, KENYA. 2Institute of Applied Technology, Fatima College of Health Sciences, Al Maqam, Al Ain, Abu Dhabi, UAE. Abstract:Background: The health-related quality of life (HRQoL) HRQoL continues to be understudied among family caregivers with chronically ill children especially in developing countries like Malawi. Aim: This study aimed to assess health-related quality of life and determine the sociodemographic factors associated with the health-related quality of life of caregivers of children with lymphoma at a referral hospital in Malawi. Materials and Methods: A cross-sectional study was carried out at a referral hospital in Malawi, and 107 caregivers were recruited. The Medical Outcomes Study Questionnaire 36-Item Short Form was used to collect data which were analysed using SPSS Version 25. Results: All 107 targeted participants were assessed. Both the physical health component and the mental health component mean scores were low (M=50.63, SD=11.86 and M=45.51, SD=11.95, respectively). Time since diagnosis of the child’s cancer accounted for significant differences in both the physical and mental health components’ mean scores (F(2, 104)=5.030, p=0.002 and F(2, 104)=5.030, p=0.006, respectively). The caregivers >41years old, those who were married, those who were employed, and caregivers whose children were diagnosed >12 months were among those more likely to report a better physical health perception compared to those without these characteristics. Conclusion: The health-related quality of life of the caregivers at the referral hospital was severely impaired. The findings suggest that caregivers of children with lymphoma have the potential to develop more serious mental and physical health problems; hence, interventions to mitigate the burden of caring for children with lymphoma are needed. Keywords:Central hospital, Family caregivers, health-related quality of life, Lymphoma, Malawi, Medical outcomes questionnaire, Mental health, Physical healthView:PDF (223.6 KB)

The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey

BackgroundThe COVID-19 pandemic is affecting many areas of life and has posed additional strains on the highly vulnerable group of caregivers of children with rare diseases (RDs). The psychosocial situation of the family caregivers deserves more attention, both in research and practice. The current study explores the distress level of caregivers of children with RDs, their psychosocial information needs, and caregiver-reported health-related quality of life (HRQoL) of children with RDs in times of the COVID-19 pandemic.MethodsData from a cross-sectional online survey conducted within the German CARE-FAM-NET project (children affected by rare diseases and their families-network) between March and August 2020 were examined. The study sample included 149 family caregivers, mostly mothers (83.2%) of 167 children with RDs. The survey assessed demographic and disease-related characteristics, distress and everyday problems of caregivers (Distress Thermometer for Parents; scale 0–10), psychosocial information needs (self-developed items; scale 0–100), and caregiver-reported HRQoL of the children with RDs (DISABKIDS Chronic Generic Measure, short-form; scale 0–100). Using descriptive statistics, we analyzed the psychosocial situation of families during the COVID-19 pandemic. We further conducted correlation analysis to investigate interrelations.ResultsThe distress level among caregivers was high (M = 6.84, SD = 2.43); 89.6% reported clinical distress (≥ 4). Everyday problems (e.g., sleep problems, fatigue, being out of shape, fears, feeling tense or nervous, and worry) were frequent. Caregivers reported a wide range of psychosocial information needs. In about half of the children (49.5%), caregiver-reported HRQoL was low, while average HRQoL (M = 58.7, SD = 19.5) was comparable to parent-reported norm data of children with severe clinical conditions. Distress correlated positively with psychosocial information needs (r = 0.40), and negatively with the caregiver-reported HRQoL of the children (r = − 0.46).ConclusionsThis study indicates a high psychosocial burden on family caregivers of children with RDs during the early COVID-19 pandemic, characterized by high distress levels and wide-ranging everyday problems, unmet psychosocial information needs, and reduced caregiver-reported HRQoL in children with RDs. The findings highlight the ongoing need for target group-specific, low-threshold support services (e.g., websites) during and after the pandemic.

Evaluating the Benefits of a Family Support Program on the Health and Well-Being of Aging Family Caregivers of Adults with Intellectual and Developmental Disabilities

ABSTRACT Providing care to a family member with intellectual and developmental disabilities (I/DD) takes a toll on the health of the caregiver and the family, especially as they age. Research shows that peer mediated family support programs can improve caregiver health and well-being. To date, most family support programs have focused on family caregivers of children and youth with I/DD. The purpose of this study was to examine the benefits of participating in the Michigan Older Caregivers of Emerging Adults with Autism and Neurodevelopmental Disabilities (MI-OCEAN) family support program grounded in the Family Quality of Life (FQOL) framework. Specifically, we examined the effect of participation on health care utilization, caregiver well-being, and perceptions of global FQOL for older caregivers of adults with I/DD. Quantitative analysis of data gathered from 82 caregivers (age 50 and older) indicated that study participation was associated with increased use of Medicaid and improved caregiver well-being (reduced burden, stress, depression; increased health satisfaction and FQOL). Future research is needed to examine the long-term impact of the family support programs in improving the health and well-being of older caregivers of adults with I/DD.

The Health Economic Impact of Nephrotic Syndrome in the United States.

Nephrotic syndrome (NS) is a rare kidney syndrome with high morbidity. Although a common contributor to the burden of chronic kidney disease, the direct and indirect costs of NS to patients and family caregivers are unrecognized. The objective was to characterize the direct and indirect costs of NS to patients. Adults with NS and family caregivers of children with NS were eligible to participate if they had a diagnosis of primary NS, had disease for at least 1 year, and had no other severe health conditions. Data-collection surveys were generated with input from the Kidney Research Network Patient Advisory Board, and surveys were mailed to the eligible participants. Participants were provided $50 for the return of completed surveys. Costs were defined as either direct out-of-pocket costs or indirect costs (e.g., time). Descriptive statistics, including percentage and median (interquartile range [IQR]) are reported. Respondents included 28 adult patients and 17 caregivers of patients who were minors. Reported health insurance coverage included 35 (78%) with private insurance, 12 (27%) with public insurance, six (13%) with Children's Special Health Care Services, and one (2%) uninsured. Median annual direct costs were $3464 ($844-$5865) for adult patients and $1687 (IQR $1035-$4763) for caregivers. Of these costs, diet-associated costs contributed $1140 (IQR $600-$2400). The most substantial indirect cost was from the time spent planning/prepping meals (adults: 183 h/yr [IQR 114-331]; caregivers: 173 h/yr [IQR 84-205]). Adults and caregivers of children with NS face substantial disease-related direct and indirect costs beyond those covered by insurance. Following replication, the study will help health care providers, systems, and payers gain a better understanding of the financial and time burden incurred by those living with NS, consider barriers when treating patients, and develop supportive strategies.

Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study

BackgroundCaring for children living with life-threatening and life-limiting illnesses can be challenging. Parents’ roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights into the provision of home-based Pediatric Palliative Care (PPC) for seriously ill children. This study is aimed at exploring the experiences of family caregivers of children diagnosed with cancer while receiving home-based PPC.MethodsThis was a qualitative study. This study used semi-structured interviews which were audio-recorded with family caregivers of twelve children diagnosed with cancer who had received home-based PPC. The interviews were transcribed verbatim. The data were analyzed using qualitative content analysis. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.ResultsThree main themes emerged: (1) The implementation of home-based PPC; (2) The benefits of home-based PPC; and (3) The family caregivers’ hopes of the home-based PPC service and their impressions of home-based PPC. The implementation of home-based PPC described the experiences of family caregivers in receiving home-based PPC provided by nurses with particular attention to the bio-psychosocial-spiritual aspects. Family caregivers experienced several benefits from the home-based PCC service, where holistic care was provided for both the patient and the family. Family caregivers shared their hopes prior to receiving support from competent health care professionals to care for their sick child at home and improve the child's quality of life. They confirmed that these hopes were fulfilled through the home-based PPC service delivered by Rachel House.ConclusionsHome-based PPC provides several benefits with a positive impact for both the children diagnosed with cancer as well as their families. Nurses involved in the home-based PPC service provide holistic care with a family-centered approach. We believe that children with terminal illnesses and their families need and deserve home-based PPC during difficult times.