Sibling Support Research Articles

Factor structure of the Quality of Children\u2019s Palliative Care Instrument (QCPCI) when completed by parents of children with cancer

BackgroundCurrently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers’ perspectives on the quality of end-of-life care and assessed its psychometric properties with mothers and fathers of children with cancer at any stage of the illness.MethodsFour subscales were included in the analysis: Connect with Families, Involve Parents, Share Information Among Health Professionals, Support Siblings. The number of items across the four subscales was reduced from 31 to 15. We conducted confirmatory factor analysis, composite reliability, internal consistency, and tests of correlation between the overall scale and subscale totals and a separate question inquiring about overall quality of care. Measurement invariance between mothers and fathers was assessed.ResultsA total of 533 mothers and fathers completed the survey. The four-factor model was confirmed and there were significant correlations between each subscale score and responses to the overall item on care quality. Cronbach’s alpha was adequate for the scale as a whole and for each subscale ranging from 0.78 to 0.90. We also found the factor structure, means, and intercepts were similar across mothers and fathers, suggesting the tool can be used by both groups.ConclusionsThere is evidence for a four-factor structure within a new Quality of Children’s Palliative Care Instrument (QCPCI) with demonstrated reliability when used with mothers and fathers of children with cancer. Ongoing assessment of the psychometric properties is needed, including testing in additional populations. However, our initial findings suggest that the QCPCI may be a helpful tool for assessing the quality of palliative care for pediatric patients anywhere along the disease trajectory from the perspective of parents.

Empirical Examination of Caregiving Processes and Outcomes among Adult Siblings of Individuals with Intellectual and Developmental Disabilities

Most individuals with disabilities in the US live in family settings; in some families, siblings are default long-term support providers. Although researchers have explored the roles of parent caregivers, the roles of sibling caregivers need attention. In this study, we examined caregiving processes and outcomes among 322 adult sibling support providers (SSPs) with a range of support roles. Adapting a conceptual model of caregiving processes, we used structural equation modeling to assess relationships among perceived social support, demands, appraisal of caregiving, empowerment, and depression. Results indicate significant associations among most variables. Appraisal of caregiving emerged as a partial mediator, suggesting that the meaning that SSPs make of their experiences exerts influence on their sense of empowerment and depressive symptoms.

Perinatal bereavement and support for siblings

When the premature death of a baby occurs in a family, brothers and sisters need support. Their silence, their absence of questions or reactions must set off alarm bells. The parents, beyond their own bereavement, have a key role to play in enabling their children to integrate this loss into their lives.

A family affair: Supporting children with chronic illnesses.

Children living with chronic illnesses may rely on family for social support during hospitalization. Understanding child and parent perspectives about the nature of the sibling and family relationships during hospitalization will provide information about these relationships during a stressful period. English-speaking children diagnosed with chronic illnesses, siblings, and parents participated. They were residing at a Ronald McDonald House. A qualitative study using interviews with children and parents was completed. Seventeen mothers, eight children with illnesses, and twelve siblings completed interviews. Children with illnesses benefitted from connections with parents. Mothers believed that siblings and the ill child benefitted from being in close contact. Siblings were worried about their brother or sister with an illness, and despite this, the family was coping well. Siblings helped with the medical regimen for a brother or sister with a chronic illness. Trying to help the family function in a routine or "normal" fashion was important to children with illnesses and siblings. Family connection was critical for children with chronic illnesses during hospitalization. Findings highlighted the importance of sibling support as a factor promoting child and family resilience when a child is facing medical procedures.

The invisible child: Sibling experiences of growing up with a brother with severe haemophilia-An interpretative phenomenological analysis.

Haemophilia is an inherited chronic condition that causes bleeding in the joints and soft tissue. Healthy siblings growing up in the family of a person with haemophilia can be affected socially and psychologically. To explore qualitatively the experiences of healthy siblings who grew up with a brother with severe haemophilia. Eleven healthy siblings (10 female, one male) who grew up with a brother with severe haemophilia A were recruited via the Haemophilia Society UK. The verbatim transcripts of individual semi-structured interviews were analysed using interpretative phenomenological analysis (IPA). Three themes were identified as follows: lack of parental attention, negative social emotions, and carrier status anxiety. Participants described having engaged in attention-seeking behaviours because they felt they lacked parental attention. They also described the resentment, anger and frustration they felt about the effect their brothers' haemophilia had on their lives. Female participants described the impact their carrier status or lack of it had on their lives. These findings could be translated into better advocacy and support for siblings through haemophilia centres. More research is also needed on how healthy siblings are affected by haemophilia, including studies guided by family systems theory.

Sweden and Finland need to improve the support provided for the siblings of children with cancer

Evidence favours sibling support as a standard of care in paediatric oncology (1). Guidelines published in 1999 by the International Society of Paediatric Oncology (2) recommended involving sibling ...

An invisible patient: Healthcare professionals' perspectives on caring for adolescents and young adults who have a sibling with cancer.

The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings' needs are limited. This study explores healthcare professionals' (HCPs') perspectives on engaging and supporting adolescent and young adult (AYA, 12-25years) siblings of young cancer patients in hospital settings. Semi-structured interviews with nine HCPs explored participants' views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings' absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs' recognition of the need to support siblings, their "invisibility," lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital-based care with community services may better facilitate the engagement and support of AYA siblings.

Pain in children with cerebral palsy – adolescent siblings’ awareness of pain and perceived influence on their family

Objective: To elucidate the experiences of being an adolescent sibling in a family that includes a child with cerebral palsy (CP) and pain, from the perspectives of siblings and parents.Methods: Seven siblings and 10 parents were individually interviewed to systematically analyse the experiences of siblings and parents with children with CP and pain. The interviews were analysed by using qualitative content analysis according to Graneheim and Lundman.Results: The theme ‘Making pain common ground for support’ and three categories combined the non-disabled adolescent sibling and parental experiences of the child’s pain, and point to the need for support of the non-disabled siblings. Dysfunctional coping influences the siblings’ daily life and future health. Siblings wanted closer contact with the Development Centre in order to alleviate their negative emotions.Conclusions: As Development Centre physiotherapists meet the families to the child with CP, they can be a link to the sibling. Physiotherapists can educate siblings on pain and how to better cope with stress and emotional discomfort caused by their sibling’s CP and pain.

3.35 Understanding the Influence of Sibling Support Group Facilitation on Mental Health Trainee Views and Skills of Family-Centered Care

Prior research suggests that family-centered interventions are among the least taught in training, yet most needed skills for practicing psychiatry. In this study, we sought to evaluate whether having mental health trainees lead a sibling support group could serve as a method to promote family-centered care among trainees.

Communication With Children and Families About Disaster: Reviewing Multi-disciplinary Literature 2015-2017.

To identify strategies for communicating with youth and children pre- and post-disaster in the context of a broader survey of child participation in disaster risk reduction as well as methods for communication with children. Youth and children are capable of peer and community education and activism concerning disaster issues and such participation benefits the young actors. Family and sibling support are important in easing the impact of trauma on children. Contemporary forms of psychological first aid appear to do no harm and in line with current evidence. Generally, more evidence from evaluations is necessary to guide the development of communication strategies. Children are growing up in increasingly urban environments with less contact with nature and greater reliance on techno-social systems. Thus, young people may misunderstand natural hazards. Schools and conscious parenting can play important roles in building understanding and psychological resilience.

The Sibling Support Demonstration Project: A Pilot Study Assessing Feasibility, Preliminary Effectiveness, and Participant Satisfaction

The Sibling Support Demonstration Project: A Pilot Study Assessing Feasibility, Preliminary Effectiveness, and Participant Satisfaction

Vécu psychologique d’adolescents ayant un frère ou une sœur porteur d’un Trouble du Spectre de l’Autisme et qualité des relations intrafamiliales

ObjectivesThe first objective of this study was to compare quality of life, symptoms of anxiety and depression, and family relationships among adolescent siblings of children with or without Autism Spectrum Disorder (ASD). The second aim was to investigate correlations between all the variables in the group “siblings with autism”. Participants and methodsParticipants are between 12 to 17 years old (19 adolescents in each group). In the group “siblings with autism”, adolescents were required to live with their siblings with autism, to not present a chronic somatic disease or psychiatric disorder and to not participate in a support group The majority of adolescent siblings of children with ASD were girls (84, 2%) and were the oldest child. A total of 10.5% had two siblings with ASD. Adolescents with siblings without a disability were mostly male (57, 9%). All adolescents completed four questionnaires. The first one (Vécu et Santé Perçue de l’Adolescent, VSP-A) assesses experience and perceived health, producing a global score and focusing on different areas related to quality of life: vitality, psychological well-being, relationship with friends, leisure activities, relationship with parents, physical well-being, relationship with teachers, school performance and self image. Secondly, the French version of the Hospital Anxiety and Depression Scale (HADS) was used to measure symptoms of anxiety and depression. Thirdly, the French version of the Egna Minnen Beträffende Uppfostran (Questionnaire d’Évaluation des Relations Parent/Enfant, QERPE) was used to assess parent/child relations. Respondents rated the support, rejection and overprotection of their both parents. The last questionnaire was the French version of the Sibling Relationship Questionnaire (Questionnaire sur les Relations Fraternelles, QRF) composed of 7 dimensions: pro-social behaviors, intimacy, affection, friendship, similarities, educational support given by the respondent to his/her brother/sister and educational support given by the brother/sister to the respondent. ResultsNo difference was found between the two groups concerning quality of life, symptoms of depression and relations with their parents. Adolescent siblings of children with ASD tend to support more their brother/sister, but feel less supported by them than adolescents of siblings without a disability. Moreover, they present more symptoms of anxiety. The higher the quality of life of adolescents with siblings with ASD, the more they feel supported by their mothers, have pro-social behaviors and feel intimacy with their siblings, and the less they feel rejected by both of their parents. The less symptoms of depression adolescents have, the more they feel supported by their mother, and the less they feel rejected and overprotected by their father. The more symptoms of depression adolescents have, the less they present pro-social behavior and the less they feel intimacy with their siblings with ASD. Concerning relations with their parents, the more they feel rejected by their mother, the less they find similarity with their siblings. The more they feel rejected by their fathers, the less they support their siblings and present less pro-social behavior, friendship and similarity. ConclusionTo conclude, it seems necessary to propose psychological support for siblings and parents of children with ASD.

The School Experiences of Siblings of Children With Chronic Illness: Australian Parents’ Perceptions

Children with chronic illness often experience difficulties at school, yet little is known about the impact of the child's illness on siblings’ school experiences. This study investigated parents’ perceptions of siblings’ school experiences and school support. We conducted semi-structured telephone interviews with 27 parents of children with a chronic illness who had a sibling or siblings (4–25 years), representing the experiences of 31 siblings. Interviews were audio-recorded, transcribed, and analysed using content analysis. Parents believed that 14 of 31 (45.2%) siblings had school difficulties related to the ill child, such as increased anxiety or stress at school, lack of attention from teachers, and changes in behaviour as a result of increased carer responsibilities. Parents identified increased absenteeism due to the ill child's hospitalisation and the impact of parent absences on sibling school functioning. Parents described general and psychological support from the school, and the importance of monitoring the sibling at school and focusing on their unique needs. Overall, our findings suggest the need for a school-based sibling support model that combines psycho-education for siblings and school personnel, individualised sibling psychological support, and shared school and parent responsibility in normalising the sibling experience and providing consistent support.

Depression and Quality of Life in Siblings of Children With Cancer After Group Intervention Participation: A Randomized Control Trial.

The objective of this study was to (1) assess the effects of a group intervention called Siblings Coping Together on siblings' psychosocial adjustment compared with controls; (2) explore the potential moderating effect of siblings' gender; and (3) investigate whether the intervention was more effective for siblings with more depressive symptoms at baseline. This was a repeated measure, parallel randomized controlled trial (RCT) with two groups. Seventy-five healthy siblings (7-16 years old, 41 males) participated. Both groups had 8 weekly 2-hr sessions. Intervention sessions had psychoeducational, social, and therapeutic problem-solving goals taught through games and crafts (n = 41); controls (n = 34) had games and crafts only. Self-reported symptoms of depression (Children's Depression Inventory, CDI) and self- and proxy-reported quality of life (QOL) (Pediatric Quality of Life Inventory, PedsQL) were obtained at baseline, postintervention, and 3 months later. Multivariable analyses with a mixed effects model were performed. No significant main group effect or group × time interactions were found for any of the scales assessed. Significant improvement over time was found for total CDI (p < .01) and proxy-reported PedsQL total (p < .001) in both groups, which may have been attributable to the passage of time. No sufficient evidence was obtained for the efficacy of the intervention in the current study. Future research may examine conducting a larger RCT comparing sibling support group to no treatment control group.

"It's Just for Us!" Perceived Benefits of Participation in a Group Intervention for Siblings of Children With Cancer.

This qualitative substudy aimed to investigate the outcomes of sibling group interventions from the perspective of siblings of children with cancer and their caregivers. Siblings were randomized to receive the Siblings Coping Together intervention (SibCT) or attention control (CG). In all, 30 participants, 18 siblings (average age = 11.89 years, 9 CG and 9 SibCT) and 12 caregivers (4 CG and 8 SibCT), were interviewed following group participation. SibCT consists of eight 2-hr manualized sessions delivered weekly; in each session, it combines arts and crafts and cognitive-behavioral strategies structured around a specific theme (family or school). The CG is structured only around arts and crafts. Interviews were analyzed using content analysis. Themes common to both groups included the following: having a group just for siblings, improving family relationships, and feeling reassured of parental role. Themes unique to the SibCT group included the following: learning program targets, increasing self-confidence, feeling less different, and connecting caregivers and siblings through homework. Themes unique to the control group included the following: being a good helper and being in the hospital for positive reasons. This study uncovered additional intervention effects not captured in quantitative measures. Whereas benefits were noted in both groups and speak to the importance of support for siblings in general, positive personal and relational changes unique to siblings in the SibCT group and their caregivers support the importance of specific interventions focused on problem-solving siblings' issues.

Health related quality of life in children with spina bifida in Uganda

BackgroundStudies on health related quality of life (HRQOL) of children with disabilities in low income countries are limited. ObjectiveTo inform interventions for children with spina bifida in low income countries, HRQOL of children with spina bifida and siblings, predictors, relationships between HRQOL and parental stress in Uganda were examined. MethodsDemographic, impairment, daily, social functioning data, and HRQOL using the KIDSCREEN-10 were collected from 39 children, 33 siblings, and 39 parents from a cohort of families of children with spina bifida. T-tests, correlations, analysis of variance and regression analysis were used to compare means between children with spina bifida and their siblings, understand relationships between variables, and identify predictors of HRQOL. ResultsChildren with spina bifida (N = 39) had lower HRQOL compared to their siblings (N = 33) (t = −3.868, p < .001 parental; t = −3.248, p = .002 child ratings). Parents (N = 39) indicated higher parental stress for their child with spina bifida (t = 2.143, p = 0.036). HRQOL child outcomes were predicted by the presence of hydrocephalus (β = −.295, p = 0.013) for children with spina bifida, and daily functioning levels (β = .336, p = 0.038), and parental support (β = .357, p = 0.041) for siblings specifically. Parent rated HRQOL outcomes were predicted by parental distress (β = −.337, p = 0.008), incontinence (β = .423, p = 0.002), and daily functioning levels (β = .325, p = 0.016) for children with spina bifida. ConclusionsTo improve HRQOL investment in neurosurgical care, community based rehabilitation, incontinence management, and parental support are required. A combination of child friendly semi-structured and creative research methods are recommended to study HRQOL.

Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review.

Siblings' psychosocial adjustment to childhood cancer is poorly understood. This systematic review summarizes findings and limitations of the sibling literature since 2008, provides clinical recommendations, and offers future research directions. MEDLINE/Pubmed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO were searched for articles related to siblings, psychosocial functioning, and pediatric cancer. After systematic screening, studies meeting inclusion criteria were rated for scientific merit, and findings were extracted and synthesized. In total, 102 studies were included (63 quantitative, 35 qualitative, 4 mixed-methods). Methodological limitations are common. Mean levels of anxiety, depression, and general adjustment are similar across siblings and comparisons, but symptoms of cancer-related posttraumatic stress are prevalent. School-aged siblings display poorer academic functioning and more absenteeism but similar peer relationships as peers. Quality of life findings are mixed. Adult siblings engage in higher levels of risky health behaviors and may have poorer health outcomes than comparisons. Risk factors for poor sibling adjustment include lower social support, poorer family functioning, lower income, non-White race, and shorter time since diagnosis, but findings are inconsistent. Qualitative themes include siblings' maturity, compassion, and autonomy, but also strong negative emotions, uncertainty, family disruptions, limited parental support, school problems, altered friendships, and unmet needs. Despite methodological limitations, research indicates a strong need for sibling support. Clinical recommendations include identifying at-risk siblings and developing interventions to facilitate family communication and increase siblings' social support, cancer-related knowledge, and treatment involvement. Future longitudinal studies focusing on mechanisms and moderators of siblings' adjustment would inform timing and targets of psychosocial care.

Our Ultimate Fellow Travelers: A Pilot Exploration of Sibling Support for Adults With Developmental Disabilities

People with developmental disabilities often experience needs for support that extend beyond the caregiving capacity of their aging parents and their siblings tend to be looked to as next-generation support providers. Yet, sibling support relationships are distinct for their simultaneously obligatory and voluntary nature. This pilot exploration, using in-depth focus group data from five siblings of people with developmental disabilities, is aimed at enriching understandings of the nature of, and expectations surrounding, sibling support for brothers and sisters with developmental disabilities. Findings reflect how sibling support evolves over time and can manifest in siblings assuming roles of: (1) companion and protector; (2) follower; (3) caregiver; and (4) within family protector. Siblings are a vital resource, yet not one that can be assumed as automatically forthcoming.

Investigating Special Education Curriculum for Visually Impaired Children in Solving Family Adjustment Issues in Pakistan

Purpose: The purpose of this research is to evaluate the curriculum with reference to special education for visually impaired children across Pakistan while solving their issues in family adjustment. In this study, family adjustment is a process through which a child, who by any means owns any disability attempts to adjust in his/her family through the moral and functional support of elders and siblings. This is a proven fact that Pakistan is one of those nations, which have the educational infrastructure for visually impaired children, yet it is still not entirely developed for visually impaired learners. Methodology: Data collected by self developed questionnaire about the problem under investigation from a sample of 5 secondary schools of visually impaired children aged 15-20 years old in Lahore, Pakistan. These students are selected through stratified sampling according to age, gender, and educational level. The instrument, namely survey on the educational satisfaction level was utilized to collect the data. The researcher used simple descriptive statistical techniques such as mean and percentages to analyze the collected data. Findings: Data showed that majority of visually impaired children were satisfied with the schools an educational system given to them. It is suggested that with the active participation of teachers can play a remarkable role in providing visually impaired children with provision of an effective learning environment to help them in adjusting in their families. Significance: The study brings to light the importance with benefits visually impaired children in nurturing their educational concerns to adjust them in their families. Moreover, this research is significant to visually impaired children, their parents, teachers.

School Engagement and Achievement in Sibling Pairs: Gender and Birth Order Matter

School engagement has been shown to be a strong predictor for school achievement. Previous studies have focused on the role of individual and contextual factors to explain school achievement, with few examining the role of siblings. This study used data of 451 adolescent sibling pairs from the Iowa Youth and Families Project to investigate the associations between school engagement and achievement in siblings by considering gender composition and birth order. Data were collected in families’ home and obtained for a target child in the 7th grade and for a sibling within 4 years of age. Average age of younger siblings (55% female) was 11.56 (SD = 1.27), while older siblings (49% female) had an average age of 13.92 (SD = 1.47). Using the two-member, four-group actor-partner interdependence model (APIM), results showed that older siblings’ engagement was positively related with younger siblings’ achievement in same-gender sibling pairs, but not in sibling pairs of opposite gender. Younger siblings’ engagement was independent of older siblings’ achievement regardless of siblings’ gender. Implications for parents and professionals suggest that support for older siblings could also benefit younger siblings in same gender pairs.