How mothers and fathers support adult childhood cancer survivors: parental attitudes, involvement, and motivation toward long-term follow-up care (results from the Swiss Childhood Cancer Survivor Study – Parents)

Vol.:(0123456789) Supportive Care in Cancer (2025) 33:992 https://doi.org/10.1007/s00520-025-10040-8 RESEARCH How mothers andfathers support adult childhood cancer survivors: parental attitudes, involvement, andmotivation towardlong‑term follow‑up care (results fromtheSwiss Childhood Cancer Survivor Study – Parents) JuliaBaenziger1,2· AnicaIlic1· TamaraDiesch‑Furlanetto3· AndréO.vonBueren4,5· GritSommer6· GiselaMichel1· ManyaJ.Hendriks1 Received: 15 June 2025 / Accepted: 11 October 2025 © The Author(s) 2025 Abstract Purpose Many childhood cancer survivors (CCS) do not attend long-term follow-up (LTFU) care. We examined (1) the involvement of mothers and fathers, (2) their attitudes towards LTFU, (3) how they motivated their adult children to attend, (4) and parents’ perceptions of the healthcare professionals involved and the decision to end LTFU care. Methods A population-based sample (Swiss Childhood Cancer Registry) of parents of long-term CCS (> 5years postdiagnosis, ≥ 20years at study) responded to a questionnaire. Multiple-choice and open-ended questions were analysed using descriptive statistics, chi2 comparisons, and qualitative content analyses. Results Of 302 families, 190 fathers (40.7%) and 276 mothers participated. One in four (26.1%) parents were involved in LTFU, providing medical, preventative/practical, and emotional support (mothers > fathers, p = 0.013). Parents of LTFU attenders were pleased with attendance (94.3%), providing them with reassurance about their child’s health. Parents of non-attenders did not wish their child attended LTFU (74.7%), because of their perceptions (e.g., ‘being cured’), respect for the child’s decision, or the need to move on. Parents (53.5%) motivated attenders (mothers > fathers, p = 0.002) by talking about importance, helping to schedule, and reminding. General practitioners (64.3%) and adult oncologists (31.9%) most often provided LTFU. The decision to end LTFU was made by the treating physician (53.4%), survivors (18.4%), or shared decision-making (17.5%). Conclusion There is unused potential for parents to motivate their children to participate in LTFU. The variety of LTFU models can be difficult to navigate; thus, working to improve visibility and encouragement might help increase attendance. Keywords Follow-up· Parents· Childhood cancer· Cohort· Health promotion· Long-term Gisela Michel and Manya J Hendriks joint last authorship. * Gisela Michel [email protected]h 1 Faculty ofHealth Sciences andMedicine, University ofLucerne, Lucerne, Switzerland 2 Heart Centre forChildren, The Sydney Children’s Hospital Network, Sydney, NSW, Australia 3 Departemnt ofPediatic Oncology/Hematology, Children’s Hospital ofBasel, Basel, Switzerland 4 Department ofPediatricsGynecology andObstetrics, Division ofGeneral Pediatrics, Pediatric Hematology andOncology Unit, University Hospitals ofGeneva, Geneva, Switzerland 5 Department ofPediatricsGynecology andObstetrics, Cansearch Research Platform forPediatric Oncology andHematology, Faculty ofMedicine, University ofGeneva, Geneva, Switzerland 6 Institute forSocial andPreventive Medicine, University ofBern, Bern, Switzerland Supportive Care in Cancer (2025) 33:992 992 Page 2 of 12 Abbreviations CCS Childhood Cancer Survivors CHF Swiss francs ICCC-3 International Classification of Childhood Cancer – Third Edition LTFU Long term follow-up SCCR Swiss Childhood Cancer Registry Switzerland SCCSS-Parents Swiss Childhood Cancer Survivor Study – Parents Background Childhood cancer is a family matter. Even years after successful treatment, parents may continue to have concerns related to cancer relapse or late effects, and remain engaged in their child’s long-term care [1]. For example, in Switzerland, among adolescent childhood cancer survivors (CCS, 11–17years), parental involvement was still widespread (92%) [1]. Mothers in particular are often reported as accompanying their children to long-term follow-up care (LTFU) visits [2, 3]. Social norms, including parents’ support and expectations, have been associated with higher intention for LTFU attendance [4]. Given the lifelong risk of medical late effects, regular LTFU is essential [5, 6]. Yet, despite recommendations, few CCS attend LTFU [6–10]. Little is known about how parental involvement continues once survivors reach adulthood, or which factors influence whether mothers and fathers remain engaged and encourage survivors’ attendance [11, 12]. The present study addresses this gap by describing parent self-reported involvement in their child’s LTFUcare and type of specialists consulted. Methods Aims & study design In this cross-sectional study, we combined closed and open-ended survey questions to investigate: (1) parental involvement in their adult child’s LTFU, (2) parental attitude towards their child’s LTFU attendance, and (3) parental behaviour and reasoning in motivating their child to attend LTFU; including potential differences among mothers and fathers of long-term CCS. Additionally, we asked parents (4) which healthcare professionals are involved in the child’s LTFU or who decided to end LTFU. Population This study is part of the Swiss Childhood Cancer Survivor Study on the health and well-being of Parents of long-term CCS (SCCSS-Parents) [13]. A population-based sample of parents of long-term CCS was identified at the Swiss Childhood Cancer Registry of Switzerland (SCCR, https:// www. child hoodc ancer regis try. ch) [14]. Eligibility criteria included being a parent of a child (≤ 16years old and Swiss resident at cancer diagnosis, at least five years postdiagnosis and off treatment, and ≥ 20years old in 2016). Procedure Parents of 575 long-term CCS received an information letter from their former treating clinic with an invitation to participate (Fig.1). Two weeks later, each parent was invited to complete a questionnaire individually. Non-responders received up to two reminders, sent approximately two and ten weeks later (01.2017–02.2018). Study materials were available in German, French, or Italian to cover the main national languages. Returned questionnaires were entered in EpiData, with 10% double-entred to ensure accuracy. Fig. 1 Recruitment flowchart of participating parents of childhood cancer survivors (CCS, aged > 20years) to study long-term involvement in long-term follow-up care Supportive Care in Cancer (2025) 33:992 Page 3 of 12 992 Measurements LTFU Parents reported whether their child still attended LTFU: yes, regularly; yes, irregularly; no; or unaware. Parents who responded to questions about their child’s LTFU attendance were categorized into parents of attenders (regular/irregular) and parents of non-attenders (no/unaware). Parents who reported being unaware of their child’s LTFU status were categorized as non-attenders, because lack of awareness was considered to indicate absence of parental engagement in LTFU. Parental involvement in LTFU: Parents reported whether they were involved (yes/no) and how (open question). Attitude towards LTFU attendance: Parents of attenders reported whether they are pleased (yes/no/unsure) about their child’s attendance, and parents of non-attenders, whether they would desire that their child attends LTFU (yes/no). Reasons for their attitudes towards LTFU were assessed in an open question. Motivating: Parents reported if they are motivating their child to attend LTFU (yes/no), and how (open question). Non-motivating parents were asked to describe their reasoning (Fig.2). Healthcare professionals involved: Parents of attenders were asked to indicate which healthcare professionals were involved in the child’s LTFU (multiple choice: general practitioner, paediatric oncologist, adult oncologist, gynaecologist, endocrinologist, ophthalmologist, neurologist, nephrologist, and ‘other’ to specify additional professionals). Parents of non-attenders were asked who decided to end LTFU (we [parents]/my child/paediatric oncologist/other [to be specified]). Cancer‑related characteristics Cancer-related characteristics were available from the SCCR: cancer diagnosis, treatment, age at diagnosis [years], time since diagnosis [years], and relapse (yes/no). Cancer diagnoses were classified according to the ICCC-3 [15] and categorized into leukaemia, lymphoma (including Langerhans cell histiocytosis), central nervous system tumour, and solid tumour. Treatment was categorized into: surgery only, chemotherapy (may have had surgery), radiotherapy (may have had surgery and/or chemotherapy), and stem cell transplantation (may have had surgery and/or chemotherapy and/or radiotherapy). Parents indicated in the questionnaire whether their child experienced late effects (yes/no). Parental characteristics Participants reported their parental role (Mother/Father), age (years), questionnaire language (German/French/Italian), migration background (defined as not being a Swiss citizen, not a Swiss citizen since birth, or not born in Switzerland), education (compulsory schooling/vocational training/upper secondary or university degree), employment status (yes/no [includes in education and retirement]), monthly household income in Swiss francs (CHF, < 6000/≥ 6000), number of children (≤ 2/> 2), civil status (single/married/widowed or divorced), whether they were living in a partnership (yes/ no), and whether they perceived themselves and their child as having a chronic health condition (yes/no) [14]. Fig. 2 Themes used in the open-ended questions aiming to better understand parental involvement in long-term follow-up of adult childhood cancer survivors. Abbreviations: LTFU, long-term follow-up; HCP, healthcare professional Supportive Care in Cancer (2025) 33:992 992 Page 4 of 12 Analysis To qualitatively describe Aim 1–3 (parents involvement, attitude, motivating their child), open-ended responses were analysed using the principles of content analysis with ATLAS.ti 22 [16, 17] following the approach from Kuckartz [18]. First, AI and MH familiarized themselves by reading all answers to one of the questions, and developed a coding scheme together by combining deductive (derived from our research questions) and inductive codes (derived from the data). Second, preliminary codes were assigned to all questions independently, by either AI or MH, creating additional codes where necessary (inductive and deductive phases). To ensure rigor, all authors exchanged files and reviewed the identified codes, discussing them in iterative meetings, and resolving discrepancies until consensus was reached to refine the coding scheme. Third, AI and MH collaboratively finalized the coding guide. Finally, the codes were categorized into overarching themes presented in the results after a discussion with all authors, and representative quotes were selected. To ensure the accuracy of participants’ quotes, back-to-back translation was performed [19]. For aim 4 (healthcare professionals and end of LTFU) we grouped and counted similar professions. To describe the study population (Table1) and Aim 4 (Table3), we used descriptive statistics. We compared mothers’ and fathers’ answers using chi2 tests. All statistical analyses were performed using Stata 16.0 Results Study populations Of the 575 contacted families, we received a response from at least one parent of 308 families (53.6% response rate, Table1;Fig.1; responders did not significantly differ from non-responding parents in socio-demographic and cancerrelated characteristics as published in Baenziger etal. [20]. Of 478 responding parents, 12 did not answer the questions regarding LTFU. This study includes 466 parents –190 fathers (40.8%) and 276 mothers (59.2%)– of 302 longterm CCS (55.3% male). Parents’ mean age was 62.3years (standard deviation (SD): 6.9years, range 45–85, Table1). Mean time since CCS’ diagnosis was 24.9years (SD: 7.1, 7.8–40.9years; Table2). CCS’ average age at study was 32.3years (SD: 6.4, range: 21–54). Of the 466 parents, 157 (33.7%, 98 mothers and 59 fathers) reported that their child attended LTFU (attenders), while 309 (66.3%, 178 mothers and 131 fathers) stated that their child does not attend LTFU or that they are unaware of it (non-attenders). Table 1 Socio-demographic characteristics of parents of long-term childhood cancer survivors Abbreviations: Unknown, values are missing; n, number Parents of Childhood Cancer Survivors (N = 466) n% Gender Mother 276 59.2 Father 190 40.8 Age category, years 36–55 71 15.2 56–65 238 51.1 66 + 153 32.8 Unknown 4 0.9 Language German 344 73.8 French 105 22.5 Italian 17 3.7 Migration background No 384 82.4 Yes 56 12.0 Unknown 26 5.6 Civil Status Single 5 1.1 Married 369 79.2 Widowed/Divorced 64 13.7 Unknown 28 6.0 Partnership No 43 9.2 Yes 404 86.7 Unknown 19 4.1 Employment No 196 42.1 Yes 252 54.1 Unknown 18 3.9 Education Compulsory schooling 53 11.4 Vocational Training 224 48.1 Upper secondary/University 146 31.3 Unknown 43 9.2 Number of children Two or less 214 45.9 More than two 212 45.5 Unknown 40 8.6 Household Income Up to and including 6000 CHF 325 69.7 More than 6000 CHF 105 22.5 Unknown 36 7.7 Supportive Care in Cancer (2025) 33:992 Page 5 of 12 992 Aim 1: Parental involvement inLTFU care Among parents of attenders, 114 (73.9%) stated not being involved in their child’s LTFU, while 41 (26.1%) remained involved. More mothers were involved than fathers (n = 32 (33.3%) vs. n = 9 (15.3%); χ2 (1,N = 155) = 6.14, p = 0.013, Fig.3). In the open-ended questions, parents reported that their involvement in follow-up attendance entailed medical tasks, such as active communication with the physician, checking results and monitoring medication. They also described preventative and practical contributions, including providing survivors with information and reminding them about upcoming appointments). Finally, parents emphasized their emotional role, supporting their child through open communication, offering a sense of security, and discussing impact of results (Table3). Aim 2: Parental attitude towardLTFU attendance Among parents of attenders, 148 (94.3%) were pleased that their child attended LTFU, five unsure (3.2%), four not answering (2.5%), and none endorsing ‘no’. Proportions (yes vs. unsure) were similar among mothers: n = 92 vs. 2 and fathers: n = 56 vs. 3 (χ2 not tested given the small subgroups; Figure3). Reasons for desiring LTFU attendance included medical, prevention and practical, emotional, autonomy-related, and relationship reasons (Table3). Parents most often referred to medical reasons, such as preventing relapse, monitoring for late effects or secondary malignancies, and managing side effects to maintain good health. Prevention and practical considerations were also emphasized, with several parents reporting that attendance helped placate fears of relapse or new health complications, especially as the cancer diagnosis dated back many years. Emotional reasons were equally important. Parents described a “sense of security that all is going well” when their child attended LTFU, and some highlighted that their child had felt abandoned after treatment, which reinforced the importance of continuing follow-up. Autonomy-related considerations also emerged, with some parents explaining that they personally did not see follow-up as necessary but nevertheless respected their child’s autonomous decision to attend. Finally, relationship factors influenced parental support. Some valued that the specialist already knew their child’s medical history, which made follow-up visits particularly meaningful. Among parents of non-attenders, 230 (74.4%) parents did not desire their child to attend LTFU, 43 (13.9%) parents desired CCS to attend, and 36 (11.7%) did not answer. Proportions desiring attendance (yes vs. no) were similar among mothers (n = 24 vs. n = 133) and fathers (n = 19 vs. n = 97, χ2(2, N = 309) = 0.07, p = 0.996, Fig.3). Explanations for not desiring their child to attend LTFU also followed the same reasoning (Table3). From a medical perspective, many parents felt that routine medical visits were sufficient, or that their child was “completely cured”, often citing longterm remission, a physician’s reassurance, or the formal end of LTFU. Some even believed that their child’s health risks were no different from peers without a cancer history. Some specific medical characteristics – such as benign tumours, no symptoms, and feeling healthy – were also mentioned as reasons for not wishing to continue LTFU care. Practical arguments included reliance on medical checks provided by an employer, which were seen as an adequate substitute. Emotional motives centred on the wish to move on. Parents spoke of the need to forget the difficult period of illness, maintain a positive mindset, and avoid instilling fear through continued hospital visits. While some parents feared bad news, others were confident about their child’s health and felt attendance was unnecessary. Finally, autonomy-related reasons were again important, with parents stressing that survivors Table 2 Cancer-related characteristics of long-term childhood cancer survivors Abbreviations: ICCC-3; International Classification of Childhood Cancer – Third edition; CNS, Central Nervous System; n, number; SD, standard deviation;† Parent-reported Childhood Cancer Survivors (N = 302) n% Gender Female 135 44.7 Male 167 55.3 Diagnosis (ICCC-3) Leukaemia 102 33.8 Lymphoma 55 18.2 CNS tumour 37 12.3 Neuroblastoma 13 4.3 Retinoblastoma 9 3.0 Renal tumour 20 6.6 Hepatic tumour 6 2.0 Bone tumour 14 4.6 Soft tissue sarcoma 22 7.3 Germ cell tumour 9 3.0 Langerhans cell histiocytosis 15 5.0 Treatment Surgery 35 11.6 Chemotherapy 166 55.0 Radiotherapy 82 27.2 Stem cell transplantation 19 6.3 Late effects† No 179 59.3 Yes 112 37.1 Unknown 11 3.6 Mean (SD) Range Age at diagnosis, years 6.9(4.5) 0–15 Age, years 32.3(6.4) 21–54 Time since diagnosis, years 24.9(7.1) 7.8–40.9 Supportive Care in Cancer (2025) 33:992 992 Page 6 of 12 Fig. 3 Parents’ involvement, attitude, and motivation regarding long-term follow-up care of adult childhood cancer survivors Supportive Care in Cancer (2025) 33:992 Page 7 of 12 992 Table 3 Themes of involvement, attitude, and motivation for long-term follow-up care of parents of childhood cancer survivors and corresponding quotes Medical Prevention and practical Emotional Autonomy-related Relationship AIM 1. PARENTAL INVOLVEMENT Are you currently involved in your child’s follow-up? If yes, in which form? I'm checking that she's taking her medicines as well as possible and email contact with the endocrinologist Mother of 19-year survivor Accompany to all doctor's appointments and provide linguistic support as well as organise transport services Mother of 39-year survivor We talk about results of the doctor's visit Father of 41-year survivor n.a n.a AIM 2. PARENTAL ATTITUDES I would like my child to attend LTFU, because: Because there are still heart problems, orthopedic problems that are not managed by the treating medical doctor that treats my daughter Mother of 18-year survivor To detect a possible relapse as soon as possible Mother of 26-year survivor There is always some fear (uncertainty) Father of 31-year survivor He is an adult and has to decide for himself Mother of 12-year survivor Since it has been so long and the doctors know her Father of 19-year survivor I would NOT like my child to attend LTFU, because: Our son is cured Father of 22-year survivor Our daughter sees her family doctor regularly and is well cared for. He has two “holistic” eyes on her health Mother of 22-year survivor At one point, you have to be finished, in order to get some distance Mother of 21-year survivor That is his decision, and I respect it Father of 13-year survivor n.a AIM 3. REASONS FOR MOTIVATING OR NOT I motivate my child to attend LTFU, by means of: I ask and tell him how important the followup is Mother of 30-year survivor I remind her of the annual check-ups she is required to perform but she willingly does them Mother of 14-year survivor I support her wish for follow-up because it gives her (momentary) security and it is a prevention for her Mother of 22-year old survivor I remind her of the annual check-ups, but she does them voluntarily Mother of 16-year survivor We openly talk about it Mother of 23-year survivor I do NOT motivate my child to attend LTFU, because of: Disease dates back approx. 30years, therapy fully completed Father of 29-year survivor Is not necessary, for her it is absolutely clear to do this every year Mother of 14-year survivor Because it would represent an emotional burden to the child Father of 23-year survivor Because he is an adult and can decide for himself whether he wants to go for a follow-up check! Mother of 22-year survivor n.a AIM 4. HEALTHCARE PROFESSIONALS INVOLVED; multiple mentions possible Supportive Care in Cancer (2025) 33:992 992 Page 8 of 12 Table 3 (continued) Medical Prevention and practical Emotional Autonomy-related Relationship Specialities Most common General/family practitioners (64.3%, n = 101) Adult oncologists (31.9%, n = 50) Common subspecialists Endocrinologist (20.4%, n = 32) Ophthalmologist (19.7%, n = 31) Gynecologist (16.6%, n = 26) Pediatric oncologist (13.4%, n = 21) Neurologist (10.8%, n = 17) Nephrologist (5.1%, n = 8) Psychologist or psychotherapist (4.5%, n = 7) Further specialists Dermatologist (n = 5) Cardiologist (n = 4) Gastroenterologist (n = 3) Dietician (n = 3) Otorhinolaryngology (n = 3) At previously treating hospital (n = 3) Orthopedist (n = 2) Otologist (n = 2) Pain management (n = 1) Andrologist (n = 1) Urologist (n = 1) Dentist (n = 1) Previous surgeon (n = 1) Nurse (n = 1) Ending LTFU Decision Maker Treating physician or hospital (53.4%, n = 165 of 309) Childhood cancer survivor (18.4%, n = 57) Parents 5.2% (n = 16) Participative decision: healthcare professionals, parents, and sometimes including the CCS (17.5%, n = 54) Reasons for ending LFTU Lack of prompts Long time since childhood cancer Insurance School conflicts Supportive Care in Cancer (2025) 33:992 Page 9 of 12 992 were “old enough” to make their own decisions — whether that meant continuing or discontinuing LTFU —depending on their age or cognitive maturity. Aim 3: Motivating their adult child’s LTFU attendance Among parents of attenders, 78 (49.7%) stated to motivate their adult child to attend LTFU, while 49 (30.2%) stated not to motivate their child. Mothers of attenders were more likely to motivate their children than fathers (59.2%, n = 58 vs. 33.9%, n = 20, χ2(1,N = 127) = 11.40, p = 0.002, Fig.2). Among the 43 parents of non-attenders who desired CCS to attend 46.5% (n = 20; 9 mothers, 11 fathers, χ2(1,N = 38) = 0.45, p = 0.504]) reported trying to motivate their child to attend LTFU. Overall, both parents who motivated or chose not to motivate their children referred to medical, prevention and practical, emotional, autonomy-related, and relational aspects (Table3). When parents described ways of motivating their child – for both attenders and non-attenders of LTFU care –, some highlighted medical reasons, such as a family history of unexpected childhood cancer, which underscored for them the importance of monitoring health and attending LTFU. Others focused on prevention and practical support, such as helping with scheduling appointments or even contacting physicians directly. Emotional motives were also present, with parents encouraging attendance because it offered both, them and their child, a sense of security. Some parents emphasized autonomy-related support, noting that their children were already independent in arranging their own follow-up, while others described relational strategies, such as engaging their child in conversations about the importance of LTFU. Conversely, parents who reported not motivating their child most often referred to medical arguments, stating that many years had passed since diagnosis or cure – sometimes 10 to 30years – and thus they did not perceive LTFU as necessary. Practical reasons were also cited, with some parents simply noting “no need” for attendance. In terms of emotional reasons, several explained that illness remained a “taboo topic” in their family or feared that reminders might emotionally distress their child. Finally, autonomy-related perspectives were central. Many stressed their child’s adulthood, independence, and right to decide whether to attend, and accepted their child’s choice even if this meant foregoing LTFU. Aim 4. Healthcare professionals involved inLTFU andwho decided toend LTFU Parents of attenders reported a variety of healthcare professionals involved in LTFU, including general/family practitioners (64.3%, n = 101), adulthood oncologists (31.9%, n = 50), and/or subspecialties, including psychologists and psychotherapy (n = 7, 4.5%) (Table3). This highlights that follow-up care is often provided across different professional groups. Parents of nonattenders reported that the decision to end LTFU care had been taken by the treating physician or hospital (53.4%, n = 165) or their child 18.4% (n = 57). Only 5.2% (n = 16) reported they (as parents) had decided, and 17.5% (n = 54) mentioned a participative decision, between the healthcare professionals, parents, and sometimes the CCS. In other words, the decision to end LTFU was most often initiated by healthcare professionals, but in some cases survivors themselves or shared decision-making processes played a role. Explanations for ending LTFU included systemic factors at the macro level, such as insurance coverage issues, the mesosystem, such as the lack of invitations by the clinics for LTFU and school conflicts, as well as personal factors at the micro level such as the long time since the cancer experience and survivors’ age. Discussion This study described parents’ perspectives regarding LTFU of long-term CCS. Only few parents of adult CCS remained involved in their adult child’s LTFU. Mothers were more often involved and motivating their child than fathers. While most parents of attenders were pleased with their child’s LTFU attendance, only a quarter of parents of non-attenders wished that their child attended LTFU. Our findings echo previous studies with parents reporting feeling ‘abandoned’ by the healthcare system shortly after treatment end, [21] and struggling to identify where their child could obtain LTFU [22]. Parents may not be fully aware of different LTFU models available since LTFU is often not standardised nor systematically implemented [23–27]. Parents can pass on this knowledge to CCS only if they understand the local system in place. A standardized transition approach from paediatric care to LTFU may help optimize the successful transfer [21]. A survivorship passport, as highlighted in studies from the US, Australia, New Zealand, and the EU, [28–30] containing information on the cancer history, medical treatments, and recommendations for LTFU [31] may represent a useful tool to guide parents and empower CCS with growing independence and self-management. Ideally, open communication between parent and child should be supported. However, as CCS grow older, they might feel uncomfortable sharing health-related or psychological experiences with their parents. This highlights the need for a nuanced understanding of parental involvement: support may include both active encouragement and respectful withdrawal as survivors take ownership of their follow-up care [32]. North American studies show that parental involvement adapted to the young persons’ developmental stage was found