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Family bonding as a result of the family talk intervention in pediatric oncology: Siblings’ experiences
Abstract
Background
Childhood cancer affects the whole family. Illness-related stressors increase the risk for poor family communication, affecting the family's well-being. Siblings describe worry and poor illness-related information. As there are few evaluated family interventions in pediatric oncology, this study aimed to pilot-test a family-centered intervention, the family talk intervention (FTI), in pediatric oncology. This paper examined the feasibility in terms of acceptability from the siblings’ perspectives.
Methods
This study derives from a pilot study of 26 families including 37 siblings recruited from one pediatric oncology center. Standard FTI comprises six meetings with the family, led by two interventionists, with the main goal to facilitate family communication on illness-related topics (e.g., prognosis, the invisibility of healthy siblings). This paper focuses on interview and survey data from siblings after participation in FTI. The study is registered at ClinicalTrials.gov (Identifier NCT03650530).
Results
The siblings, aged 6 to 24 years, stated that the interventionists made the meetings feel like a safe environment and that it was a relief for the siblings to talk. They reported that FTI helped the family talk openly about illness-related topics, which they felt led to increased family understanding and improved relationships. The siblings described that FTI also helped them with their school situation. The majority of the siblings reported that FTI came at the right time and involved an appropriate number of meetings.
Conclusion
According to the siblings, the timing, content, and structure of FTI were appropriate. FTI showed benefits for both the siblings and each family as a whole.
... Caregivers receiving FCC have been found to have better parental psychosocial health scores, decreased psychological stress, and higher levels of psychological well-being [21][22][23]. Improved communication and receiving enough information, which are the main components of FCC, are also indicated to have an association with enhanced levels of psychological health in families of children with cancer [24,25]. ...
... Our finding is consistent with other studies that reported the association of a higher level of perceived FCC with decreased mental health problems [21,22]. Similarly, previous studies indicated improved psychological health among caregivers who received FCC-based intervention [24,25]. The main components of FCC, such as the provision of specific and general cancer-related information [43,44], enabling caregivers to participate in childcare and decision-making [45,46], having good communication [24,25], and providing coordinated and comprehensive care, were found to decrease caregivers' PD. ...
... Similarly, previous studies indicated improved psychological health among caregivers who received FCC-based intervention [24,25]. The main components of FCC, such as the provision of specific and general cancer-related information [43,44], enabling caregivers to participate in childcare and decision-making [45,46], having good communication [24,25], and providing coordinated and comprehensive care, were found to decrease caregivers' PD. FCC also reduced parental distress caused by lack of information [43], underscoring the importance of considering the complex nature of caregivers' needs and integrating FCC into pediatric oncology care. ...
Background
Psychological distress (PD) is a common mental health problem faced by caregivers of children with cancer. The involvement of families in childcare was found to be associated with lower levels of distress.
Objective
The study aims to determine the associations between family-centered care (FCC) and PD among caregivers of children with cancer receiving treatment at Tikur Anbessa Specialized Hospital (TASH), Ethiopia.
Methods
An institution-based, cross-sectional study was conducted from June to December 2022. Caregivers of children with cancer aged 0-14 years receiving cancer treatment at the pediatric oncology unit completed a face-to-face, interviewer-administered, structured questionnaire during a routine inpatient or outpatient visit. The questionnaire included questions on the characteristics of the child and caregiver, PD (measured by the Kessler Psychological Distress Scale [K10]), FCC (measured by the Measure of Processes of Care [MPOC-20]), and social support (measured by the Oslo-3 Social Support Scale [OSS-3]). Data were collected using the Kobo toolbox and exported to SPSS (version 26; IBM Corp) for cleaning and analysis. A multivariable logistic regression model was used. An odds ratio with a 95% CI was calculated, and a P value less than .05 was considered statistically significant.
Results
A total of 384 caregivers of children with cancer participated in the study. The total PD score ranged from 10 to 50, with a mean score of 17.30 (SD 8.96; 95% CI 16.84-18.60). The proportion of caregivers found to have mild, moderate, and severe levels of PD was 43 (11.2%), 35 (9.1%), and 51 (13.3%), respectively. The overall prevalence of mild to severe PD symptoms was 33.6% (95% CI 28.9%-38.3%). A statistically significant negative association was found between FCC and PD (adjusted odds ratio [AOR] 0.68, 95% CI 0.53-0.86). In addition, having no formal education (AOR 2.87, 95% CI 1.28-6.45), having a history of relapse (AOR 3.24, 95% CI 1.17-9.02), beginning cancer treatment at TASH (AOR 2.82, 95% CI 1.4-4.85), beginning treatment within the last 3 months (AOR 3.99, 95% CI 1.73-9.23), and beginning treatment within the last 4 to 18 months (AOR 2.68, 95% CI 1.25-5.76) were significantly associated with higher level of PD.
Conclusions
A total of 1 in 3 caregivers have reported PD. FCC was found to be protective of PD. The finding of this study suggests the need for FCC intervention to improve the mental health condition of caregivers. In addition, the intervention needs to consider the educational status of the caregivers, the time since the cancer diagnosis, and the history of relapse.
... Registered in PROSPERO with registration number of CRD42022384890 dialogue (34, 36,40,44). Similarly a systematic review by Park et al (50) identi ed empowerment as a key component of FCC intervention. In addition, giving a chance for families to participate in some activities of care, information sharing, and joint decision-making were important components of FCC (50). ...
... The sixteen studies included in the review included ve studies from Iran (34-38), four from Sweden (39)(40)(41)(42), three from USA (43)(44)(45) and one study each from Chile (46), China (47) and Indonesia (48). One study was conducted in both USA and Saudi Arabia (49). ...
... One study was conducted in both USA and Saudi Arabia (49). Ten studies used non-randomized controlled trial intervention (36- 39,42,43,[45][46][47][48], four studies were randomized controlled interventional studies (34,35,44,49), and two study used qualitative interviews (40,41). All studies selected for nal analysis were published from 2014 to 2022. ...
Background
Family-centered care (FCC) is a globally accepted health care delivery system characterized by collaboration among the parents, by facilitating family participation, effective communication and respect/dignity care. The implementation of FCC in different settings employed various implementation strategies based on what works best for a specific context.
Aim
To identify key-components of FCC implemented among parents of children with cancer and evaluate the effects of FCC on parental-related outcomes.
Method
A systematic review was conducted in adherence to the standardized reporting format: PRISMA 2020 statement an updated guideline for reporting systematic reviews. We searched six data bases i.e., Cochrane library, Web of science, PubMed, Ovidweb, CINAHL and PsycINFO for studies published from establishment of each database to May 29, 2023. Studies evaluating the effectiveness of FCC among parents of children with cancer were included. Data were extracted using a pretested data extraction tool and analyzed using thematic qualitative analysis. Cochrane risk of bias tool was used to assess risk of bias in the studies included.
Result
The search identified 1,710 interventional studies of which 16 met our criteria and were at the end included in the systematic review. Ten of the studies were non-randomized clinical trials, four were randomized trials and two were qualitative studies. The review identified three themes for components of FCC in pediatric oncology setting. These are providing Information/education, family preparation, support and empowerment and facilitating communication. In relation to its effect on parental outcomes, it is found that FCC interventions will help to improve psycho-social condition of parents, communication of parents with other family members and health care professionals and improved their understanding about childhood cancer.
Conclusion
Three areas i.e., information sharing, communication and empowerment of FCC, were implemented in pediatric oncology setting and all studies reported positive effect of FCC interventions on parental outcomes. The findings indicated that FCC concepts among parents of children with cancer are still in the development process and remain to be fully characterized. Future researches need to aim at achieving a consensus on clear definitions and elements of FCC and designing more comprehensive interventions.
Registration
Registered in PROSPERO with registration number of CRD42022384890
... It has been proven feasible by families in pediatric oncology in terms of acceptability. FTI has also been shown to be effective in various ways from the children's perspectives [22]. Given the salient role of the parents, parenting satisfaction is thus an important factor for family adaptation and well-being when a child has cancer. ...
... When considering the support obtained from the FTI, almost all parents stated in their interviews that family togetherness had in some way been strengthened and that they now felt more satisfied with family life in general. Similar to these findings, siblings in families affected by childhood cancer reported that family relationships had been strengthened following the FTI [22]. Taken together, these results imply that the FTI might have initiated a process within the family that has contributed positively to overall family functioning. ...
Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents’ perspectives. Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents. Results: After participation in the FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI. Conclusions: The findings regarding FTI’s ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.
... Although most siblings in the study found it sufficient to talk with their parents, parents may need help understanding that siblings need to talk and could benefit from improved knowledge of how to do this. Some interventions may be helpful to improve parent -sibling communication, such as the family talk intervention (Ivéus et al., 2022;Lövgren et al., 2022) or SIBS (Haukeland et al., 2020). Our study shows that it may be difficult for siblings to talk with their parents when they are at the hospital. ...
Background
There is a lack of knowledge regarding siblings’ experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings’ perspectives are often expressed through their parents and not by siblings themselves.
Method
This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3–29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen’s lifeexistentials.
Results
One overall theme, “What about me?”, illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one’s own.
Conclusion
The study revealed that siblings’ own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings’ needs.
... In conjunction with the end of the FTI, the parents were invited to be interviewed by a researcher (the children's experiences are reported elsewhere 19,20 ). The primary focus of the interviews was the parents' experiences of taking part in the FTI, and parents were initially asked to freely describe their overall experience of the FTI. ...
Background:
Despite the challenges that caring for a child with cancer brings for parents, little knowledge is available concerning the effects on the parents' couple relationship. Furthermore, few interventions have been designed to support parents in their couple relationship. The aim of this paper was, therefore, to explore parents' experiences of their couple relationship while having a dependent child with cancer and the support they received from a family-based intervention, the Family Talk Intervention (FTI).
Methods:
Data for this paper were taken from semi-structured interviews performed in a pilot study of the FTI in the context of pediatric oncology. In total, 22 couples were interviewed after participating in the FTI. The interviews were transcribed and analyzed using qualitative content analysis.
Results:
Parents described how maintaining a couple relationship while living with childhood cancer could be very challenging and was not given the highest priority. The FTI was considered a way of providing important support to the couple and a chance for them to sit down together and listen to each other's perspectives on the situation. Parents described that the FTI had helped them gain an increased mutual understanding, sometimes also helping them to realize that they needed more extensive professional support in their relationship.
Conclusions:
Living with childhood cancer and upholding a healthy couple relationship is challenging for parents. The FTI has the potential to support couples, mainly by providing opportunities for parents to communicate with each other. However, some couples may be in need of a tailored clinical intervention.
Context:
Despite the proposed high burden of siblings of children and adolescents with life limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being.
Methods:
In this prospective, cross-sectional trial siblings of patients of a large pediatric palliative home care team were asked to answer the KINDL survey of health-related quality of life, the strengths and difficulties questionnaire (SDQ) to assess problems and resources of children and adolescents as well as the LARES questionnaire, a potential tool for early screening of distress in siblings of chronically ill children. The results of the KINDL total and subdomains as well of the SDQ-subdomains were compared to recent German normative data using multiple t-tests.
Results:
In total, 44 siblings (28 female; age 7 to 18 years, mean 11.8 ± 3.03) of 29 families participated in this study. The subgroup which matches the age range of current normative data of 11-17 years old siblings (n = 25) reported a significant lower total quality of life as measured by KINDL in comparison to normative data. Subscale analyses revealed a significant lower physical and psychological wellbeing and self-esteem. Siblings of PPC patients yielded significant higher scores in the sub-domain prosocial behavior compared to normative data as measured by the SDQ.
Conclusions:
Siblings of children receiving PPC in a home care setting are at risk for a relevant impairment of their health-related quality of life. Future studies should address the potential for possible interventions specific for this population-at-risk.
Objective
The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents.
Method
This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden.
Results
Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future.
Significance of results
This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.
Background:
Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care.
Methods:
This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6-19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation.
Results:
The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8-12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family.
Conclusions:
Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.
Trial registration:
ClinicalTrials.gov, Identifier NCT03119545, retrospectively registered 18 April 2017.
Purpose:
Previous research shows that bereaved parents are at an increased risk for intense and prolonged grief responses. To offer effective support to parents during a child's cancer treatment and after their child's death, more knowledge is needed about factors related to the child's illness trajectory that may contribute to prolonged grief in bereaved parents and about possible sex differences related to such factors. Therefore, we examined possible contributing factors associated with prolonged grief in cancer-bereaved mothers and fathers 1 to 5 years after their child died of cancer.
Methods:
We studied data from a population-based nationwide survey, including 133 mothers and 92 fathers who had lost a child to cancer 1 to 5 years earlier, using univariable and multiple regression analyses to assess the associations between prolonged grief and possible contributing variables.
Results:
The variables associated with lower levels of prolonged grief symptoms for mothers were being able to talk about feelings within the family (P = .00) and trusting that health care professionals made every possible effort to cure the child (P = .01). The statistically significantly associated variables for fathers were having said farewell to the deceased child in the way they wanted (P = .00) and feeling that they had received practical support from health care professionals during the child's illness trajectory (P = .01).
Conclusion:
We found factors during the illness of children with cancer that contributed to prolonged grief for parents; these were different for mothers and fathers. The results may have implications for design of family bereavement support within pediatric oncology care, including addressing the differing needs of mothers and fathers more effectively.
Introduction
There is evidence that families with a child diagnosed with cancer need psychosocial support throughout the illness trajectory. Unfortunately, there is little research into psychosocial interventions for such families, especially interventions where the entire family is involved. The aim of this pilot study is therefore to evaluate a psychosocial intervention, the family talk intervention (FTI), in paediatric oncology in terms of study feasibility and potential effects.
Methods and analysis
This pretest/post-test intervention pilot study is based on families with a child diagnosed with cancer. All families that include at least one child aged 6–19 years (ill child and/or sibling) at one of the six paediatric oncology centres in Sweden between September 2018 and September 2019 will be asked about participation. The intervention consists of six meetings with the family (part of the family or the entire family), led by two interventionists. The core elements in the intervention are to support the families in talking about the illness and related subjects, support the parents in understanding the needs of their children and how to support them and support the families in identifying their strengths and how to use them best. Mixed methods are used to evaluate the intervention (web-based questionnaires, interviews, field notes and observations). Self-reported data from all family members are collected at baseline, directly after the intervention and 6 months later. Study outcomes are family communication, knowledge about the illness, resilience, quality of life and grief.
Ethics and dissemination
The study has been approved by the Regional Ethical Review Board in Stockholm (Dnr 2018/250-31/2 and 2018/1852–32). Data are processed in coded form, accessible only to the research team and stored at Ersta Sköndal Bräcke University College in a secure server.
Trial registration
ClinicalTrials.gov Identifier NCT03650530 , registered in August 2018.
Objective:
The stress of having a child with cancer can impact the quality of relationships within the family. The current study describes the longitudinal trajectory of marital, parent-child, and sibling conflict beginning around the time of diagnosis through the first year of treatment. We examined the average level of marital, parent-child, and sibling conflict at each monthly time point in the first year of treatment; the proportion of families that fall into the distressed range of marital, parent-child, and sibling conflict at each time point; the typical trajectory of conflict during the first year of treatment and whether there are differences in trajectories across families.
Method:
A total of 160 families of children newly diagnosed with cancer (Mage = 5.6 years; range = 2-18 years) participated in a short-term prospective longitudinal study. Primary caregivers provided monthly reports of marital, parent-child, and sibling conflict.
Results:
Using multilevel modeling (MLM), most families showed stability in quality of family relationships, although considerable between-family variability was observed. For married couples, 25-36% of couples were in the distressed range at one time point over the first year of treatment. For married couples, more distress occurred at earlier months, particularly month 3. For parent-child and sibling dyads, the most difficult time periods were during later months.
Conclusion:
Implications for development of interventions that target at-risk family relationships are discussed. Identifying processes that predict between-family variability in trajectories of family relationships is an important next step, particularly for the marital relationship. (PsycINFO Database Record
Research indicates that a subset of youths with childhood cancer and their parents will experience significant psychological distress throughout the course of their illness. Importantly, the existing literature indicates that psychosocial support is beneficial in decreasing symptoms of distress in these families. The aim of the current review is to determine the extent of the evidence to support a standard of psychosocial care for children and their families throughout the cancer trajectory; thus, we examined the research related to psychosocial outcomes in youth with cancer and their parents. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.
Introduction: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings’ advice to health care professionals (HCPs) working with children with cancer and their families. Materials and Methods: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an openended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis. Results: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother’s/sister’s care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings’ wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care
they wanted. Conclusion: Information, communication, and involvement should be emphasized by HCPs to support siblings’ psychosocial needs in both the health care setting and within the family.
Background
Beardslee’s family intervention (FI), which is a family-based preventive method for children of mentally ill parents, has been implemented on a national level in Sweden.
Material
Fourteen children and parents from nine families were interviewed about how the FI was for the children. Data were analysed by qualitative content analysis.
Discussion
A central finding was children’s sense of relief and release from worry because of more knowledge and openness about the parent’s illness in the family.
Conclusion
The results indicating relief for the children are encouraging.
Evaluating complex interventions is complicated. The Medical Research Council's evaluation framework (2000) brought welcome clarity to the task. Now the council has updated its guidance
Families with parental affective disorder participated in a large-scale longitudinal study which involved participation in a standardized, short-term, psychoeducational preventive intervention. These families were followed for at least 3 years. An analysis of clinical material from the first 12 families to complete the intervention identified specific healing principles that contributed to positive changes in behavior and attitude. The healing elements of the intervention included demystification of the illness, modulation of shame and guilt, increase in the capacity for perspective taking, and development of a hopeful perspective and belief in one's own competence. Therapeutic effectiveness evolved in a process that linked cognitive information and presented depression as an illness that could be understood with the acknowledgement of family members' individual and collective experience. In this way, families developed a shared understanding of the illness that was useful over time. This article discusses the ways in which the healing principles promoted changes in family members' behavior and attitude, which, in turn, enhanced resiliency in children.
Objective:
Depression in parents is a prevalent and impairing illness that is encountered frequently in medical practice. Children of depressed parents are at risk for psychopathology and other difficulties. A series of recent national reports have recommended the development of prevention efforts targeting children of depressed parents. Yet, to date, few controlled prevention studies of depression in children and adolescents have been conducted. In this study, we report the evaluation of 2 preventive intervention strategies that target children living in homes with depressed parents. Both are public health approaches that were designed to be used by a wide range of practitioners from a variety of disciplines, including pediatricians, internists, school counselors, nurses, and mental health practitioners. We adopted a developmental perspective and intervened with families when children were entering the age of highest risk for depression onset (ie, adolescence). We chose a family-based approach to prevention and sought to reduce risk factors and enhance protective factors for early adolescents by increasing positive interactions between parents and children, and by increasing understanding of the illness for everyone in the family. Our prevention approaches were designed to provide information about mood disorders to parents, to equip parents with the skills they need to communicate information to their children, and to open a dialogue with their children about the effects of parental depression. We hypothesized that participation in these prevention programs would result in parental change in child-related behaviors and attitudes about depression and its impact on the family. In addition, we hypothesized that this parental change would produce change in children's self-understanding, and in children's depressive symptomatology.
Methods:
We conducted a large-scale efficacy trial of 2 manual-based preventive intervention programs that were designed to be used widely in public health settings. These interventions target the relatively healthy children (ages 8-15) of parents with mood disorder. Ninety-three families (88.5% of our initial sample), including 121 children, participated in this study through the fourth assessment point. These families were assigned randomly to either a lecture or a clinician-facilitated intervention. Both interventions were specified in manuals. The lecture condition consisted of 2 separate meetings delivered in a group format without children present. The clinician-facilitated condition consisted of 6 to 11 sessions, including separate meetings with parents and children, and a family meeting in which the parents led a discussion of the illness and of positive steps that can be taken to promote healthy functioning in the children. In addition, telephone contacts or refresher meetings were conducted at 6- to 9-month intervals. In both conditions, psychoeducational material about mood disorders, risk, and resilience was presented and efforts were made to decrease feelings of guilt and blame in children. Parents were helped to build resilience in their children through encouraging their friendships, their success outside of the home, and their understanding of parental illness and of themselves. In addition, in the clinician-facilitated condition, efforts were made to link the psychoeducational material presented to the family's own unique illness experience. To address directly how their lives had changed, all family members in both conditions were assessed for psychopathology and for overall functioning at intake, and for psychopathology, functioning, and response to intervention immediately postintervention, approximately 1 year postintervention, and again approximately 2.5 years postintervention.
Results:
We examined the outcomes of child understanding and internalizing symptomatology, and a number of predictor variables, using repeated measures analyses with generalized estimating equations. We found that parents in both conditions reported significant change in child-related behaviors and and attitudes, and that the amount of change reported increased over time from time 3 to time 4 (chi2(1) = 18.1). Moreover, relative to parents in the lecture program (mean number of changes = 6.3), parents in the clinician-facilitated program reported more change in child-related behaviors and attitudes (mean number of changes = 9.8). Children in both conditions reported increased understanding of parental illness attributable to participation in our intervention programs. There was a positive association between the amount of change children reported in their understanding of parental illness and the number of changes couples reported in child-related behaviors/attitudes (chi2(1) = 37.3; ie, parents who had changed the most in response to intervention had children who also changed the most). Finally, internalizing scores for all children decreased with increased time since intervention (chi2(1) = 7.3). In addition, females had higher internalizing scores than males (chi2(1) = 5.3). There was no significant effect of group on children's change in internalizing symptomatology (chi2(1) = 0.2).
Conclusions:
We enrolled families with relatively healthy children, administered carefully designed preventive interventions that are manual-based and relatively brief, and found that these programs do have long-standing positive effects in how families problem solve around parental illness. Our results show significant benefits from both interventions. Moreover, changes in parents' perceptions translated directly into changes in children's own understanding of parental illness. Parental behavior and attitude changes and their connection to child changes in understanding identify an important mediating variable: family change. By increasing children's understanding of parental mood disorder, our interventions were found to promote resilience-related qualities in these children at risk. This presentation represents the first and only longitudinal primary prevention study of relatively healthy children at risk for psychopathology attributable to parental mood disorder and demonstrates a significant reduction in risk factors and increase in protective factors in these families over a long time interval--2(1/2) years. Our results provide support for a family-based approach to preventive intervention.
Content analysis is a widely used qualitative research technique. Rather than being a single method, current applications of content analysis show three distinct approaches: conventional, directed, or summative. All three approaches are used to interpret meaning from the content of text data and, hence, adhere to the naturalistic paradigm. The major differences among the approaches are coding schemes, origins of codes, and threats to trustworthiness. In conventional content analysis, coding categories are derived directly from the text data. With a directed approach, analysis starts with a theory or relevant research findings as guidance for initial codes. A summative content analysis involves counting and comparisons, usually of keywords or content, followed by the interpretation of the underlying context. The authors delineate analytic procedures specific to each approach and techniques addressing trustworthiness with hypothetical examples drawn from the area of end-of-life care.
Background:There are few scientifically evaluated psychosocial interventions in pediatric oncology, despite the needs for families. The family-based psychosocial intervention “The Family Talk Intervention” (FTI) has shown promising results in other care contexts and was therefore pilot-tested in pediatric oncology. In this study, we examined the experiences of participating in FTI from ill children’s perspectives regarding feasibility and potential effects.
Methods: This pilot study involved 26 families in pediatric oncology that had participated in FTI. The paper is focused on those ill children who answered surveys (n =19) and/or participated in interviews (n =11) when FTI had ended. Data were analyzed with descriptive statistics and thematic analysis. Results: For most ill children, FTI came at the
right time, included a reasonable number of meetings, and the length of the meetings was appropriate. The children felt listened to and understood by the interventionists and almost all children reported that FTI had helped them in some way. The children’s perceptions indicated that FTI improved communication within the family and strengthened
family relations. Children reported that the parents and their siblings seemed to feel better after participation and became more understanding. Discussion: The findings of this pilot study indicated that a full-scale study could be valuable from the ill children’s perspective, as FTI was reported as feasible and had positive effects. The findings showed
that FTI gave families an opportunity to open up communication about the illness, adjust their behaviors, and strengthen family relationships. Trial registration: ClinicalTrials.gov Identifier NCT03650530.
The aim of this study was to explore the feasibility of the family talk intervention (FTI) and
its acceptability to dependent children when a parent is cared for in palliative home care.
The main goal of FTI is to increase family communication about the illness. The present
paper derives from a pilot study and is based on 25 children’s reports, involving both questionnaires and interviews, after participation. A majority of the children appreciated the
structure and content of FTI. They felt seen, heard, and acknowledged by the interventionists and recommended FTI to other children in similar situations.
Objective
One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.
Method
A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.
Results
FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families’ needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.
Significance of results
According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.
Objectives:
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.
Method:
MEDLINE/Pubmed, CINAHL, 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, four mixed-methods).
Results:
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 than 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.
Conclusion:
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.
Parents and caregivers of children with cancer are both resilient and deeply affected by the child's cancer. A systematic review of published research since 1995 identified 138 studies of moderate quality indicating that parent distress increases around diagnosis, then returns to normal levels. Post-traumatic symptoms are common. Distress may be impairing for vulnerable parents and may impact a child's coping and adjustment. Moderate quality evidence and expert consensus informed a strong recommendation for parents and caregivers to receive early and ongoing assessment of their mental health needs with access to appropriate interventions facilitated to optimize parent, child, and family well being. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.
Objective:
The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.
Method:
A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).
Results:
Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home.
Significance of results:
Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.
The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2-9 years later.
This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000-2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann-Whitney U-test was conducted to investigate if the experiences influenced anxiety 2-9 years later.
The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2-9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.
It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on. Copyright © 2015 John Wiley & Sons, Ltd.
Copyright © 2015 John Wiley & Sons, Ltd.
A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives.
A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden.
The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%).
To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice.
Copyright © 2014 Elsevier Ltd. All rights reserved.
Objective:
The aim of this study was to identify existing guidelines, standards, or consensus-based reports for psychosocial care of children with cancer and their families.
Purpose:
Psychosocial standards of care for children with cancer can systematize the approach to care and create a replicable model that can be utilized in pediatric hospitals around the world. Determining gaps in existing standards in pediatric psycho-oncology can guide development of useful evidence-based and consensus-based standards.
Methods:
The MEDLINE and PubMed databases were searched by investigators at two major pediatric oncology centers for existing guidelines, consensus-based reports, or standards for psychosocial care of patients with pediatric cancer and their families published in peer-reviewed journals in English between 1980 and 2013.
Results:
We located 27 articles about psychosocial care that met inclusion criteria: 5 set forth standards, 19 were guidelines, and 3 were consensus-based reports. None was sufficiently up to date, comprehensive, specific enough, or evidence- or consensus-based to serve as a current standard for psychosocial care for children with cancer and their families.
Conclusion:
Despite calls by a number of international pediatric oncology and psycho-oncology professional organizations about the urgency of addressing the psychosocial needs of the child with cancer to reduce suffering, there remains a need for development of a widely acceptable, evidence-based and consensus-based, comprehensive standard of care to guide provision of essential psychosocial services to all patients with pediatric cancer.
This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural “canons” regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, “schematic base” of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.
For a child, facing the imminent death of a parent is a highly stressful situation. This study assessed a preventive support program for children aged between 5 and 18 years and their families when a mother or father has an incurable form of cancer. We chose a family-based approach to reduce risk factors and enhance protective factors by increasing positive interactions between parents and children and by increasing their mutual understanding of the illness and its family impact. In this article, we focus especially on the children's experiences of how the Family Support Program met their needs and supported their coping. The qualitative study involved collecting descriptive data via in-depth interviews with children of cancer patients in palliative care after participation in the Family Support Program. The program helped the children to feel more secure; increased their knowledge and understanding; helped them become aware of their own role, their family's strengths, and whom they could approach for help; and helped them realize that it was good and helpful to talk about the illness situation. They needed to talk in private without having to think about other family members' reactions, but they also needed to be in dialogue with other family members.
This is the fourth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology constituted in 1991. This document develops another topic discussed and approved by the SIOP Committee: "communication of the diagnosis" is addressed to the pediatric oncology community as guidelines that could be followed. The highly stressful nature of the diagnostic period must be acknowledged, and communication involving the staff and all family members should cover both medical and psychosocial issues. A well-planned and extensive initial session should be followed by continuing discussions. The goal is a knowledgeable family that can talk openly with its members and with the staff.
This, the fifth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, develops another important topic: the Therapeutic Alliance between families and staff. This is addressed to the Pediatric Oncology Community as Guidelines that could be followed. Every parent, medical staff member, and psychosocial professional involved in the care of the child should be responsible for cooperating in the child's best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.
One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child.
In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 answered a questionnaire, and 429 stated whether or not they had talked about death with their child.
None of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27 percent) who did not talk with their child about death regretted not having done so. Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it (47 percent, as compared with 13 percent of parents who did not sense this awareness in their child; relative risk, 3.7; 95 percent confidence interval, 2.3 to 6.0). The same variable was related to having talked about death (50 percent vs. 13 percent; relative risk, 3.8; 95 percent confidence interval, 2.6 to 5.6), as was being religious (42 percent vs. 25 percent; relative risk, 1.7; 95 percent confidence interval, 1.2 to 2.3). The child's age was related to both having talked about death and the parents' regretting not having talked about it.
Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death.
Guidelines for a therapeutic alliance between families and staff: a report of the SIOP working committee on psychosocial issues in pediatric oncology
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