Supporting parents impacted by cancer: Development of an informational booklet for parents with cancer who have adolescent and young adult children

Konings, Stéphanie; McDonald, Fiona E. J.; Patterson, Pandora

doi:10.1002/pon.5475

Cited by 12 publications

(15 citation statements)

References 9 publications

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“…Besides the easy and fast access to information, the information booklet could also possibly lead to positive dynamics within the family due to incorporated practical suggestions. A recent study by Konings et al (2020) about the development of a booklet for parents affected by cancer with adolescent and young adult children in English language had concurrent findings regarding most critical information needs (importance and handling of communication about cancer with children) as well as the anticipated and experienced positive effects of the developed information booklet (confidence as parents and in communicating with their children).…”

Section: Discussionmentioning

confidence: 91%

Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents

2022

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BackgroundParents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: (1) investigating the acceptability and usability of the information booklet, (2) determining parental information needs, and (3) collating suggestions for implementation. Finally, we adapted the booklet according to the findings.MethodsWe interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis.Results(1) Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. (2) Following dimensions were identified as information needs: (a) communication, (b) support offers, (c) children’s disease understanding and needs, (d) organization of family life, (e) competence in parenting, and (f) sources of additional information material. (3) The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings.ConclusionIndicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated.

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Section: Discussionmentioning

confidence: 91%

Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents

2022

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“…Understanding this can assist in identifying at-risk AYAs with higher perception of parental illness unpredictability and unmet needs, and providing tailored interventions to improve their psychosocial adjustment to parental cancer. These interventions could include the following: (1) increasing AYAs understanding of, and active involvement in, their parents' cancer treatment and care through psychoeducation and attending medical appointments with their ill parent [48]; (2) encouraging discussion about cancer within the family and the participation of AYAs in peer recreation/ therapeutic camps which provide an opportunity for psychosocial support, skill development, and time out from the daily stresses of living with a parent affected by cancer [49]; and (3) using acceptance and commitment therapy based therapeutic approaches that facilitate having a different relationship with the realities of uncertainty and unpredictability while focusing the young person's energy on living their life in line with their values [42,50].…”

Section: Discussionmentioning

confidence: 99%

Illness unpredictability and psychosocial adjustment of adolescent and young adults impacted by parental cancer: the mediating role of unmet needs

Landi

Duzen

Patterson

et al. 2021

Support Care Cancer

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Purpose Given the large number of adolescents and young adults (AYAs) impacted by parental cancer and the potential for negative psychosocial outcomes in this vulnerable population, this study examined the mediating role of offspring unmet needs with regard to parental cancer and the relation between AYAs psychosocial adjustment and perceived illness unpredictability. Methods A total of 113 AYAs (aged 11–24 years) living with a parent diagnosed with cancer completed a questionnaire assessing illness unpredictability, offspring unmet needs, and psychosocial adjustment (i.e., health-related quality of life and internalizing problems). Results Higher offspring unmet needs were associated with lower health-related quality of life (r = –0.24**) and higher internalizing problems (r = 0.21*). Offspring unmet needs mediated the relation between illness unpredictability and health-related quality of life (standardized indirect effect = –0.100* [–0.183, –0.018]) but not internalizing problems (standardized indirect effect = 0.067 [–0.015, 0.148]). In particular, higher illness unpredictability was related to higher unmet needs (β = 0.351**) which, in turn, predicted lower health-related quality of life (β = –0.286**). Conclusion These findings identify offspring unmet needs and illness unpredictability as implicated in AYAs positive psychosocial adjustment to parental cancer. Given that AYAs are at greater risk of elevated psychosocial difficulties, interventions should target offspring unmet needs and perception of illness unpredictability to mitigate the adverse effects of parental cancer.

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“…Cancer patients parenting minor children experience increased levels of stress and anxiety compared to patients without minor children [4,5]. Additional to the burden of the life-limiting disease and its treatment, parents with cancer worry about how to maintain family life and their role as a "good" parent and supporter [6][7][8][9]. Parents often feel insecure if, when and how to communicate with their children about cancer and how to adequately address their children's needs [8,10,11].…”

Section: Introductionmentioning

confidence: 99%

“…Additional to the burden of the life-limiting disease and its treatment, parents with cancer worry about how to maintain family life and their role as a “good” parent and supporter [ 6 – 9 ]. Parents often feel insecure if, when and how to communicate with their children about cancer and how to adequately address their children’s needs [ 8 , 10 , 11 ].…”

Section: Introductionmentioning

confidence: 99%

“…Healthcare professionals (HCPs) have a significant role in identifying patients parenting minor children, their specific needs and—if necessary—initiating supportive, psychosocial care [ 1 , 6 , 8 , 11 ]. In order to provide high-quality, patient-centred cancer care, involvement of family and their specific needs is essential [ 15 , 16 ].…”

Section: Introductionmentioning

confidence: 99%

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Child- and family-specific communication skills trainings for healthcare professionals caring for families with parental cancer: A systematic review

et al. 2022

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Introduction As part of high-quality cancer care, healthcare professionals (HCPs) play a significant role in identifying and addressing specific needs of cancer patients parenting minor children. However, HCPs experience various barriers to adequately support parents with cancer. This systematic review explores current CSTs incorporating child- and family- specific modules for HCPs in oncology. Moreover, outcome measures and effectiveness of trainings are systematically investigated. Methods The systematic review was registered within PROSPERO (registration code: CRD42020139783). Systematic searches were performed in four databases (PubMed, Cinahl, PsycInfo, Web of Science) in 12/2020, including an update in 12/2021 and 08/2022. Quantitative, primary studies fulfilling the pre-defined inclusion criteria were included. Due to the expected heterogeneity a meta-analysis was not conducted. Study selection and quality assessment were conducted by two independent researchers, data extraction by one. Study quality was assessed using an adapted version of the National Institutes of Health quality assessment tool for pre-post studies without control group. Results Nine studies were included in this review following an experimental pre-post design only. Two CSTs were specifically designed to improve communication with cancer patients parenting minor children, the remaining seven incorporated a brief family module only. Seven programs were face-to-face trainings, one an e-learning and one a webinar. Eight studies found at least one statistically significant improvement in communication after training. However, quality of most studies was fair. Conclusion This is the first review exploring specific CSTs for HCPs caring for cancer patients parenting minor children. As only two CSTs focused on parental cancer, evidence on the effectiveness of such CSTs is limited. Existing CSTs should be evaluated properly and include details on content of family modules. Further studies including and evaluating specific CSTs focusing on parental cancer are needed in order to strengthen HCPs’ competencies to meet specific needs of patients parenting minor children.

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Supporting parents impacted by cancer: Development of an informational booklet for parents with cancer who have adolescent and young adult children

Cited by 12 publications

References 9 publications

Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents

Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents

Illness unpredictability and psychosocial adjustment of adolescent and young adults impacted by parental cancer: the mediating role of unmet needs

Child- and family-specific communication skills trainings for healthcare professionals caring for families with parental cancer: A systematic review

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