Background: The Normalization Process Theory (NPT) is increasingly used for evaluating and understanding implementation processes of complex care interventions. One key tool for applying the NPT in research and practice is the NoMAD questionnaire, which offers astructured approach to examination of the four constructs that according to the NPT are central in implementation and normalisation processes. We aimed to evaluate the psychometric properties of the Swedish version S-NoMAD.

Methods: Secondary analysis was performed on pooled S-NoMAD survey data from six implementation studies in different health and social care contexts. The NPT factor structurewas tested by confirmatory factor analysis (CFA). Internal construct reliability was test edusing Cronbach‟s alpha. Validity was confirmed by assessing the fit of the CFA using the fit measures Comparative Fit Index, Tucker-Lewis Index, root mean square error of approximation and standardised root mean square residual. Pearson correlations amongst the latent construct and general questions about the intervention were calculated.

Results: The estimation results of the CFA indicate that the four-factor model implied by the NPT fits the data reasonably well. The factor loadings are of good sizes and the fit indices do not imply a mis-specified model. A good internal construct validity, indicated by a good model fit to the NPT four-construct model and acceptable to good internal reliability, was shown. External validity was also demonstrated.

Conclusions: The CFA results indicate that the S-NoMAD has good psychometric properties for capturing perceptions of people involved in various Swedish implementation studies conducted in both health and social care contexts, demonstrating its general applicability. They show that the S-NoMAD, unlike the majority of instruments for evaluation of implementation processes, is not context- and intervention-specific. The findings highlight the utility of the S-NoMAD and show that it meets some important criteria for pragmatic measures. Further studies are warranted on different interventions implemented in diverse contexts regarding the meaning of the magnitude of the NoMAD scores in order to clarify itspotential value as a tool for assessment of implementation strategies and on psychometric properties beyond construct validity and internal construct reliability, for example on test-retest reliability and longitudinal studies focusing on responsiveness.

The Family Talk Intervention is a family-centered intervention in six sessions, which can be a tool to help health care social workers support families with dependent children when someone in the family has a severe illness. However, the influence of contextual factors on the implementation of Family Talk Intervention warrants further investigation. The purpose of this study was to examine the organizational context of social workers and its association with the implementation of Family Talk Intervention among families in which a parent or child is severely ill with identified palliative care needs. The study was part of a larger intervention project where Family Talk Intervention was implemented through a structured program in three different clinicalcare contexts: advanced palliative care, adult cancer care, and advanced pediatric care. Two validated instruments were used to measure social workers' ratings of their organizational context and the implementation of Family Talk Intervention. Results showed that higher ratings on certain organizational aspects were significantly associated with higher implementation ratings. These aspects, namely informal interactions, social capital and culture of the workplace, should be studied further. These may serve as facilitators for the implementation of family-centered interventions like Family Talk Intervention, by social workers and should be observed and promoted during the implementation of interventive processes.

Purpose: Up to 40% of parents of children with cancer experience relationship distress; a significantly higher proportion compared to the general population. Despite this elevated risk, there are few in-depth qualitative studies investigating relationship distress in the paediatric oncology context. Therefore, this study aimed to explore how parents of children with cancer experience relationship distress to thereby generate an in-depth understanding of the phenomenon.

Method: A sample of 25 parents (17 mothers, 8 fathers) who had experienced relationship distress related to their child's cancer participated in semi-structured interviews exploring relationship dynamics, communication, conflict management, and relational changes following the child's diagnosis. The interviews were audio-recorded, transcribed verbatim, and analysed using inductive content analysis.

Results: Three categories and nine subcategories were identified. In addition to these, one overarching theme emerged. The first category 'Pressure on the relationship', illustrated factors that placed strain on the couple relationship. The second category 'When unity fails' included parents' experiences of challenges in dealing with the situation together as a couple. The third category 'Fractured togetherness' highlighted relationship deterioration as a result of the cancer experience. The theme 'Fighting together, yet drifting apart' linked the categories by illustrating the process of experiencing joint hardships, of trying to manage these together, but ending up with a wounded relationship.

Conclusion: This study contributes with an in-depth understanding of relationship distress in parents of children with cancer. Thereby, it can contribute to the development of currently limited interventions to support parents' couple relationships in paediatric oncology care.  

Background: The psychosocial needs of families involving a child with a life-limiting or life-threatening condition are well recognized. However, evidence-based interventions that address the needs of the entire family remain scarce, even though family health can be maintained and supported if interventions encompass each individual family member, as well as the family as a unit. The aim was to evaluate the family talk intervention (FTI), regarding family communication, and psychosocial health, for families involving a child with a life-limiting or life-threatening condition.

Methods: This pre-post study without a control group involved families of children with a life-limiting or life-threatening condition receiving FTI at a pediatric hospital and a hospice in Sweden. The study is registered at clinicaltrials.gov (ID NCT05020158, date of registration: 23 August 2021). FTI is a family-based intervention with the goal of facilitating family communication about illness-related topics, e.g., prognosis, support parenting, and making all children's needs visible. In total, 105 participants from 29 families were included. Surveys measuring self-assessed family communication and satisfaction, anxiety, resilience, parenting skills, and children's mental problems were answered at three time points: baseline (before intervention), at the end of the intervention, and six months later. Changes over time were analyzed using linear mixed-effects models.

Results: Significant improvements were reported in family communication, family satisfaction, parenting skills, and levels of anxiety over time. Children's mental health problems were reduced over time regarding emotional symptoms, conduct problems, peer relationship difficulties, and hyperactivity. No changes were found regarding resilience.

Conclusion: The results suggest that FTI contributes to improved family communication and psychosocial health for families involving a child with a life-limiting or life-threatening condition. This highlights the value of a systemic approach that actively involves all family members.

Background: The psychosocial needs of families involving a child with severe illness are well recognized. However, evidence-based interventions that address the needs of the entire family remain scarce even though family health can be maintained and supported if interventions encompass each individual family member, as well as the family as a unit.

Aim/Research question or hypothesis: To evaluate the effectiveness of the Family Talk Intervention (FTI), regarding family communication, parenting and psychosocial health for families involving a child with severe illness and palliative care needs.

Methods: This pre-post study involved families of children with a severe illness receiving FTI in pediatric palliative care setting in Sweden. FTI is a family intervention with the purpose of facilitating family communication about difficult illness-related topics, e.g. prognosis, support parenting, and making the children's needs visible (siblings, ill child). In total, 105 participants from 29 families were included. Surveys measuring self-assessed family communication and satisfaction, anxiety, resilience and parenting skills and children's difficulties issues, were answered at three time points: baseline (before FTI), at the end of FTI and six months later. Changes over time were analyzed using linear mixed models.

Results: Significant improvements were reported in family communication, family satisfaction, and levels of anxiety over time. Among children, reductions were reported in emotional symptoms, conduct problems, peer relationship difficulties, and hyperactivity. No changes were found in resilience over time. No significant gender differences were found; however, fathers reported greater improvements in parenting skills.

Discussion: FTI proves effective for family communication, parenting and anxiety and reduces difficulties among children involved in FTI. All these improvements may enhance the psychosocial health among all family members.

Objectives: There is a lack of family-based psychosocial support interventions in palliative care when a parent of children or youths has a life-threatening illness. One intervention that has shown positive effects is the family talk intervention (FTI). This study aimed to describe the influence of contextual factors on FTI sustainability, as perceived by healthcare professionals (HCPs), after a median of 18 months of implementation in clinical practice in cancer and palliative care when a parent of children or youths has a life-threatening illness.

Methods: Focus groups and individual interviews were conducted with 15 HCPs working with FTI. Data were analyzed using conventional qualitative content analysis.

Results: HCPs identified contextual factors that facilitated or hindered the use of FTI. The analysis resulted in 3 categories, Trying to prioritize FTI and coordinate families in a complex context is challenging, Working alone without FTI-educated colleagues hamperssustainability, the satisfaction of seeing families become stronger contributes to a receptiveness for change.

Significance of the results: This study shows that organizational support and resources, alongside the individual's facilitating factors, such as receptiveness for change, are crucial for sustainability after the initial implementation. Witnessing a positive impact is motivational and also supports the sustainability of an intervention despite contextual constraints.

Families affected by cancer need psychosocial support, however few family interventions have been scientifically evaluated. The Family Talk Intervention (FTI) was pilot tested in pediatric oncology with 26 families. Issues raised and addressed during FTI meetings were explored by analyzing hospital social workers' (HSWs) fieldnotes. The findings show a range of severity in the family issues raised. These encompassed families' wellbeing, communication, conflicts, strengths, and needs for further support. Findings indicate that FTI can be a structured, yet flexible, way for HSWs to identify and address the complex psychosocial needs of these families.

Barn som lever med en förälder eller ett syskon med livshotande eller livsbegränsande sjukdom står inför många utmaningar. Samtidigt som de ska hantera att en nära familjemedlem är svårt sjuk går de igenom en viktig period i livet av personlig mognad och växt. Syftet med detta kapitel är att beskriva dessa barns livssituation samt ge rekommendationer kring hur stöd kan utformas för dessa barn och unga baserat på forskning. Forskning visar att det är svårt för professionella att veta hur de kan stötta och tala med barn om en nära familjemedlems svåra sjukdom och förestående död. Ofta finns en osäkerhet och rädsla att förvärra situationen om det svåra berörs. Forskning visar också att barn som har en nära familjemedlem med svår sjukdom ofta känner sig osynliga och att professionella och andra i omgivningen inte uppmärksammar dem i den utsträckning som de önskar och behöver. Flertalet faktorer i vården, till exempel bristande information och kommunikation, riskerar att ge ökad risk för psykisk ohälsa många år efter familjemedlemmens död. Stöd, som vi vet gör nytta, är därför viktigt. Idag har inte alla barn tillgång till stöd på lika villkor. I detta kapitel ges exempel på hur stöd kan utformas så att barn kan vara delaktiga. Förslag ges på hur lokala riktlinjer inom vården kan vara utformade och hur vården kan uppmuntra familjen att samtala med varandra om hur situationen är och hur alla mår, något som är skyddande för psykiska besvär.  

Background: The Family Talk Intervention (FTI) is a psychosocial intervention supporting families where a family member has palliative care needs. This study aimed to evaluate how the Family Talk Intervention (FTI) was implemented over time from the perspective of hospital social workers (HSWs) in their everyday clinical practice among families with a severely ill parent or child in need of palliative care.

Methods: HSWs (n=21) working in adult and children’s care completed a 10-day education where they were trained to use FTI. The education was part of a multifaced implementation strategy involving educational outreach visits, facilitation, clinical implementation meetings, and audit and feedback. The HSWs were then expected to use FTI in their clinical practice to support families with dependent children. To assess if and how FTI was integrated into their daily practice, they were also asked to complete the Swedish version of the Normalization Process Theory Measure (S-NoMAD) on three occasions: on completion of the FTI-education, six months later, and one year later. For the longitudinal analysis of data, Friedman’s test was used.

Results: The HSWs rated the use of FTI high after completing the FTI-education, indicating a positive attitude towards FTI. In the longitudinal analysis, statistically significant changes were seen for two questions in S-NoMAD, where the HSWs’ ratings showed that the FTI became more familiar and normalized over time. Generally, the HSWs’ ratings of S-NoMAD’s main constructs were high and stable over time, indicating a positive view of FTI and its implementation. However, for the single questions, the ratings were slightly more negative to some contextual aspects, such as managerial support and resources.

Conclusion: As results showed, HSW mainly rated different aspects of the implementation process as positive, both from the beginning, but also over time. Therefore, the intervention could be judged to have been implemented as a tool to support families when a parent or a child is severely ill. Contextual factors, involving managerial support and resources were rated lower, indicating the importance of those aspects when introducing interventions into healthcare. The result also indicates that the multifaced implementation strategy supported the HSW’s everyday clinical practice.

Background: The Family Talk Intervention (FTI) is a psychosocial intervention supporting families where a family member has palliative care needs. This study aimed to evaluate how the Family Talk Intervention (FTI) was implemented over time from the perspective of hospital social workers (HSWs) in their everyday clinical practice among families with a severely ill parent or child in need of palliative care.

Methods: HSWs (n = 21) working in adult and children's care completed a 10-day education where they were trained to use FTI. The education was part of a multifaced implementation strategy involving educational outreach visits, facilitation, clinical implementation meetings, and audit and feedback. The HSWs were then expected to use FTI in their clinical practice to support families with dependent children. To assess if and how FTI was integrated into their daily practice, they were also asked to complete the Swedish version of the Normalization Process Theory Measure (S-NoMAD) on three occasions: on completion of the FTI-education, six months later, and one year later. For the longitudinal analysis of data, Friedman's test was used.

Results: The HSWs rated the use of FTI high after completing the FTI-education, indicating a positive attitude towards FTI. In the longitudinal analysis, statistically significant changes were seen for two questions in S-NoMAD, where the HSWs' ratings showed that the FTI became more familiar and normalized over time. Generally, the HSWs' ratings of S-NoMAD's main constructs were high and stable over time, indicating a positive view of FTI and its implementation. However, for the single questions, the ratings were slightly more negative to some contextual aspects, such as managerial support and resources.

Conclusion: As results showed, HSW mainly rated different aspects of the implementation process as positive, both from the beginning, but also over time. Therefore, the intervention could be judged to have been implemented as a tool to support families when a parent or a child is severely ill. Contextual factors, involving managerial support and resources were rated lower, indicating the importance of those aspects when introducing interventions into healthcare. The result also indicates that the multifaced implementation strategy supported the HSW's everyday clinical practice.