Laura Inhestern

Psychosocial Interventions for Families with Parental Cancer and Barriers and Facilitators to Implementation and Use - A Systematic Review.

Background Parental cancer has a significant impact on minor children and families. Psychosocial interventions for affected families can provide support where necessary. This systematic review aims at providing an overview of existing interventions and support programs and focuses on the systematic investigation of barriers and facilitators for using psychosocial interventions for families affected by parental cancer (PROSPERO; registration number CRD42014013020). Methods A search of five electronic databases (EMBASE, MEDLINE, PsycInfo, Psyndex, CINAHL) was conducted in June 2014, and updated in September 2015. We included any kind of studies reporting psychosocial support services or interventions for families affected by parental cancer. Study quality was assessed using the Mixed Method Assessment Tool. Narrative synthesis and thematic analyses were undertaken to examine the included interventions and to identify barriers and facilitators for use and implementation. Results A total of 36 studies covering 19 interventions and support services were included in the systematic review. Interventions focused on children, parents or several family members and analyses revealed a broad picture of theoretical background and primary aims. Several studies focused on developmental or implementation phases or descriptions of interventions. Other included studies reported results of evaluations using qualitative and quantitative methods. Results suggest that interventions are helpful and that participants improved in various outcomes. The thematic analyses indicate that barriers for use of support services refer to aspects concerning the patients and families, such as practical difficulties, perceived need for support or fear of stigma. Cancer patients who understood the need and benefit of support services may have used them more often. Additionally, intervention characteristics such as a flexible structure and accessibility were important to reach families affected by parental cancer. Disease characteristics and complications in collaborations were identified as potential barriers. The provision of information about interventions by clinicians and understanding the support as part of routine care seem to be key issues for implementation and use of psychosocial support. Conclusion This review identified a broad number of intervention concepts for families with minor children affected by parental cancer. Findings provide a basis for existing or future psychosocial interventions to anticipate potential barriers and facilitators to implementation and use and can help to reach a wider range of families in need for support.

Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children.

Although cancer patients with minor children have become more of a focus of psycho‐oncological research, little is known about specific parenting concerns. Instruments to assess the concerns and worries of parents with cancer are rare. The Parenting Concerns Questionnaire (PCQ) addresses this issue. We analyzed parenting concerns in cancer survivors and evaluated the German version of the PCQ.

Understanding parenting concerns in cancer survivors with minor and young-adult children

OBJECTIVE Parents with cancer are concerned about the impact of their disease on their children. However, parenting concerns and associated factors in cancer survivors have not previously been analyzed. The purpose of this study is to examine parenting concerns and to test a path model for understanding parenting concerns in cancer survivors. METHODS In a cross-sectional study, a total of 1416 parents with cancer (mean age 47.5years, 74% women) having minor or young-adult children were recruited through two cancer registries. Parenting concerns were assessed using the Parenting Concerns Questionnaire. Structural equation modeling (SEM) was used to analyze the associations between social support, parenting confidence, emotional distress, family functioning and parenting concerns. RESULTS Mothers reported higher total parenting concerns than fathers (p<0.001). We observed strong effects of emotional distress and parenting confidence on parenting concerns. Family dysfunctioning was associated with lower concerns. An indirect association between social support and parenting concerns was identified. CONCLUSION Parenting concerns in cancer survivors display the need for interventions and after care programs that focus on affected families with minor and young adult children. The results of the structural path model illustrate the associations between psychological and interactional factors. Supporting parents with cancer in their parenting confidence and strengthen social support and family functioning may not only reduce the long-term burden on the parents themselves but also the burden on the entire family.

The role of rehabilitation measures in reintegration of children with brain tumours or leukaemia and their families after completion of cancer treatment: a study protocol

Introduction For ill children as well as for their parents and siblings, childhood cancer poses a major challenge. Little is known about the reintegration into daily life of childhood cancer survivors and their families. The aim of this prospective observational study is to further the understanding of the role of rehabilitation measures in the reintegration process of childhood leukaemia or brain tumour survivors and their family members after the end of cancer treatment. Methods and analysis This prospective observational study consists of three study arms: a quantitative study in cooperation with three German paediatric oncological study registries (study arm 1), a quantitative study in cooperation with a rehabilitation clinic that offers a family-oriented paediatric oncological rehabilitation programme (study arm 2) and a qualitative study at 12-month follow-up including families from the study arms 1 and 2 (study arm 3). In study arm 1, children, parents and siblings are surveyed after treatment (baseline), 4–6 months after baseline measurement and at 12-month follow-up. In study arm 2, data are collected at the beginning and at the end of the rehabilitation measure and at 12-month follow-up. Families are assessed with standardised questionnaires on quality of life, emotional and behavioural symptoms, depression, anxiety, fear of progression, coping and family functioning. Furthermore, self-developed items on rehabilitation aims and reintegration into daily life are used. Where applicable, users and non-users of rehabilitation measures will be compared regarding the outcome parameters. Longitudinal data will be analysed by means of multivariate analysis strategies. Reference values will be used for comparisons if applicable. Qualitative data will be analysed using thematic analysis. Ethics and dissemination This study has been approved by the medical ethics committee of the Medical Chamber of Hamburg. Data will be published in peer-reviewed journals and presented at conferences.

Parental cancer: Characteristics of users of child-centred counselling versus individual psycho-oncological treatment

The aims of this study were to investigate the characteristics of users of a specific child‐centred counselling service (COSIP) and to compare those to parents using an individual psycho‐oncological treatment (PO).

Psychosocial interventions for rehabilitation and reintegration into daily life of pediatric cancer survivors and their families: A systematic review

Background The survival rate of childhood cancer patients increased over the past decades. However, even after successful treatment the transition back to normalcy is often a major challenge for the whole family. Therefore, this study aims to provide an overview of psychosocial interventions for childhood cancer survivors and their families in the first years after the end of cancer treatment. Methods We conducted a systematic review following the PRISMA Checklist (Preferred Reporting Items for Systematic Reviews and Meta-Analyses; PROSPERO registration number: CRD42017059782). In November 2016 and September 2017, we searched the databases CINAHL, MEDLINE, PSYNDEX, and Web of Science. We included studies investigating psychosocial interventions for childhood cancer survivors diagnosed under the age of 21, their family members or the family as a whole. Further, we summarized the study characteristics and conducted a narrative synthesis of the results. Finally, we assessed the study quality with the Effective Public Health Practice Project Quality Assessment Tool. Results We identified a total of 8215 records based on our database searches and 17 additional records through hand searches. We included 33 articles in the qualitative synthesis. Most of the studies described interventions for the cancer survivor (n = 15). Nine studies investigated interventions for the whole family, and two studies interventions for siblings. The interventions mainly take place in an outpatient group setting (n = 15). Overall, most of the studies reported a significant psychosocial benefit of the interventions. However, the quality of the included studies was limited. Conclusion In summary, we identified a broad range of different interventions and thus could give a comprehensive overview of existing interventions for childhood cancer survivors and their families. However, there is a necessity for high quality studies. The results may help to optimize health care services that support families with the re-entry into daily life.

When a mother has cancer: strains and resources of affected families from the mother’s and father’s perspective - a qualitative study

BackgroundWhen a mother has cancer, families with minor children are confronted with major challenges for all family members. According to the Family Adjustment and Adaptation Response (FAAR) Model, the (im) balance between strains and resources of families affected by cancer can be an important indicator on the families’ adjustment to the situation. Hence, this study aims to explore the strains and resources of families of mothers with cancer from the mother’s and father’s perspective.MethodsWe conducted semi-structured interviews with 29 mothers diagnosed with cancer and ten fathers. The data was transcribed verbatim and analyzed using thematic analysis.ResultsBoth, mothers and fathers, reported a general impact of the disease regarding social and practical changes as well as strong emotional reactions. Parents reported specific strains and stressors regarding their parental role e.g. changes in the self-concept as a parent or fears and concerns about the children. Many mothers additionally experienced feelings of guilt. All fathers reported an increase of responsibilities and pressure. Both, the ill and healthy parent, reported strains and stressors for their children, e.g. parents observed behavioral changes and strong emotional reactions in their children. Families used a variety of resources and coping strategies on external, family and intrapersonal levels to encounter the challenges of the disease. They reported that e.g. support networks, flexible working hours and competent medical staff were helpful. Moreover, on the family level e.g. family time, open communication and the children themselves were considered to be important resources. On the intrapersonal level, parents reported resources such as setting small aims for the future and taking time for oneself.ConclusionsOur findings indicate a high amount and diversity of stressors and strains for the ill and healthy parent and for their children. At the same time, parents use diverse resources and coping strategies on external, family or intrapersonal level. The assessment of strains and resources may be an important indicator for the support needs of families when a mother has cancer. Enhancing and activating resources and coping strategies may help the families to manage the situation better and may prevent maladjustment in the family members.

Social relationships and physician utilization among older adults—A systematic review

Background In older age health needs and demand for health services utilization increase. Individual’s social relationships can play a decisive role regarding the utilization of outpatient health care services. This systematic review examines the associations of structural and functional dimensions of social relationships with outpatient health services use of older adults. Methods The databases PubMed, CINAHL, SocINDEX, PsycINFO, International Bibliography of the Social Sciences (IBSS), Sociological Abstracts, and Applied Social Sciences Index and Abstracts (ASSIA) were searched in February 2016. The methodological and reporting quality of the articles was assessed and the results were synthesized descriptively and systematically. Results Out of 1.392 hits, 36 articles (35 studies) were included in the systematic review. The methodological and reporting quality of the included articles was reasonable. Various structural and functional characteristics of social relationships were associated with the use (yes/no) and the frequency of using outpatient care among older adults. The majority of the associations between structural dimensions of social relationships and the use of physicians were positive and moderate in strength. The associations between functional dimensions of social relationships and the probability of using physician services were inconsistent and varied in strength. For the most part, social relationship variables assigned to the structural dimension were positively and weakly to moderately associated with the frequency of physician visits. Functional aspects of social relationships also tended to have positive associations with the frequency of physician utilization. The associations were weak to moderate in strength. Conclusions Measuring social relationships and their influence on health services use is a challenging methodological endeavor indicated by the inconclusive results. The results suggest that the outpatient care utilization behavior of older individuals being structurally and functionally integrated in social relationships is different to older adults being socially isolated or having no social support. All in all, the current status of quantitative data was insufficient. Future health services research should accentuate social ties in more detail, especially according to quality aspects of social relationships.