Inception of a pediatric cancer caregiver support group guided by parental needs

Abstract Background Survivorship in childhood cancers has steadily improved and increased the need for caregivers to provide a longer duration of care both in the hospital and at home. Involving parents and caregivers to voice their unmet needs could significantly impact and direct the institution of support groups. Aims To ascertain the need for a pediatric caregiver support group based on a survey that explored the unmet needs of caregivers of children with cancer. Methods Caregivers of pediatric patients (n = 17) undergoing treatment at the hospital were requested to complete our Pediatric Caregiver Psycho‐social Needs Survey. The survey encompassed questions on different aspects of caregiving and the caveats felt by the caregivers. The needs were categorized into seven main domains (physical, emotional, family‐related issues, spiritual, social, logistics, and information) that focused on understanding the importance and the perceived level of professional support that was expected. The data was analyzed using SPSS. Results The most often reported needs were (i) emotional concerns with the majority reporting fear (58.8%), (ii) logistics‐related needs for play/art‐based activities (58.8%), (iii) informational needs focusing on understanding diagnosis/prognosis (47.1%), side‐effects of treatment and physical changes (41.2%). Family‐related needs escalated when caregivers (23.5%) looked after other ill family members at home. Caregivers (23.5%) also reported Spiritual concerns suggesting the need for religious/spiritual support in the hospital. Majority of caregivers (82.4%) expressed interest to be part of a pediatric caregiver support group. However, professional support sought for was much lesser compared to the percentage of needs/concerns expressed. Conclusion Our study highlighted the unmet needs of caregivers which included emotional, logistics‐related needs, and concerns about information. Hence, the goal is to provide a unified platform through a support group that holistically can address needs and empower caregivers.


| INTRODUCTION
The diagnosis of pediatric cancer has a multifold psychosocial effect not just on the child in question but the entire family. In particular, challenges faced by the caregivers encompass financial, social, and emotional domains and persist even after the completion of treatment. The experience of caregiving for patients with cancer has been described as "intense, episodic, and challenging.". 1 In the pediatric oncology setting, demands of caregiving are protean and ranges from medical care (management of symptoms, timely adminis- An extensive literature base supports that caregiver interventions have the potential to improve caregiver QOL and emotional wellbeing 6,7 for adult patients with cancer and alleviate distress in caregivers of pediatric patients with cancer. 8 In India to be specific often owing to the overwhelming burden of clinical commitments, clinicians may not always be able to devote time to address the psychosocial concerns of caregivers.
Thus, support groups could become a platform to address common concerns, develop skills for caring, identifying red flags, promoting self-care, raising awareness and foster a sense of togetherness among affected families. In a country like India where the financial burden of treatment often takes over the other problems, due importance, needs to be given to the psychosocial needs of the caregiver.
However, the assumption of parental needs by the clinical team can sometimes be a case of "smoke and mirrors". To obviate this bias, we attempted to channelize the needs of parents through a formal survey and direct the results towards the creation of a caregiver support group.

| METHODS
This was a cross-sectional study that used a convenience sample. We included only primary caregivers of our pediatric cancer patients aged 3-15 years who were on follow-up with the pediatric oncologist at our center between July and August 2019. Information on demographics (age, gender, occupation, relationship with patient) were also collected along with a question eliciting their willingness to attend a pediatric caregiver support group.

| Pediatric caregiver psychosocial needs survey
The survey was developed based on a review of literature [9][10][11] and domains of the NCCN (National Comprehensive Cancer Network) Distress Thermometer. Once the survey questionnaire was formulated it was given for face validity to a few experts (medical oncologist, pain and palliative care physicians, psycho-oncologists) in the hospital. The necessary changes were made with regard to number of items and wording before it was finally given to the caregivers. The preliminary survey contained a domain on financial concerns, but after a repeat discussion we felt financial concerns by default would be a concern and require professional assistance and hence omitted the domain. The final survey contained 33 items which had seven domains and were to be answered on a 5-point Likert scale to understand (a) level of importance (as per the caregiver) and (b) need for professional assistance. The seven domains included physical concerns, emotional concerns, family-related concerns, social concerns, F I G U R E 1 Domains assessed on the pediatric caregiver psychosocial needs survey logistics-related concerns, informational concerns and spiritual/religious concerns ( Figure 1).

| Study procedure
The 33-item survey was distributed to caregivers in the pediatric outpatient (OPD) clinic of the hospital after obtaining verbal consent.
Most of the caregivers were well-versed in English and completed the survey and the demographic detail sheet on their own. The remaining were helped by the psychologist/translator as they were more comfortable in the local vernacular (Kannada, Hindi, and Tamil) and one of international nationality (Arabic). The survey took about 10 min to complete and were returned to either the oncologist or psychologist upon completion.

| Data analysis
The data were analyzed using SPSS v 20.0. We grouped the demographics (caregiver age, gender, occupation, and if they were the primary caregivers) and domains using descriptive statistics as frequencies and proportions.

| RESULTS
We approached a total of 20 caregivers attending the pediatric oncology OPD, of which 17 consented to complete the survey. The remaining declined due to other planned engagements. Based on those included we found that almost all participants were in the age group of 24-47 years and were parents (94.1%) of the patient. More than half of our caregivers were female and the mothers (52.9%) of the patients and majority of them were homemakers (29.4%) ( Table 1).
Majority of our participants (82.4%) also reported interest to be part of the support group.
Of the seven domains, the most frequently reported concerns were pertaining to emotional concerns. In this domain the most commonly reported feelings were fear (58.8%), worry (52.9%), sadness and uncertainty (47.1%) and difficulty accepting child's illness (41.2%).
However, less than half of the caregivers who reported distress sought professional assistance in each of these domains; fear (17.6%) worry (17.6%), sadness (23.5%), and uncertainty (11.8%) and difficulty accepting child's illness (17.6%). The other concerns in this domain that were reported were helplessness (23.5%) and difficulty in adjusting to the new routine (17.6%). Although reported by a minority, all of them felt the necessity for professional assistance. With regard to issues pertaining to puberty and adolescence, only a minority (11.8%) reported it as concern, however the need for professional assistance (17.6%) was higher.
The next most reported domain was that of logistic concerns.
Majority of caregivers reported the need for the hospital to have art based/play activities for the children (58.8%) while only (5.9%) reported requiring professional assistance on the same. Another major concern reported was on Academics/Education of the child (41.2%) although only (5.9%) required assistance. Few parents also reported the need for additional opportunities to discuss with the doctor/treating team (17.6%), but the need for professional assistance was lesser (11.8%). Logistic concerns reported on accommodation (11.8%), transportation (17.6%), need for a translator (11.8%) and issues with child care (23.5%), although were reported by a minority were all found requiring equal need for professional assistance.
In the domain of informational needs, we found that majority caregivers reported concerns with accessing information about the illness (47.1%) and more than half (29.4%) expressed need for professional assistance. The next most reported concern was regarding the physical changes endured by the child during treatment (41.2%) for which the need for professional assistance was intently expressed   was "emotional struggles after end of curative treatment and transitioning back to life as it was before the diagnosis". 15 In another survey-based study done by Rajajee et al. depression was reported by 100% of caregivers who were the mothers of the children. 16 Although a majority of caregivers reported concerns in the emotional domain, only a small percentage asked for professional assistance. This pattern was observed in almost all the other domains of the survey. We hypothesize that the reason for this discrepancy is the stigma associated with seeking psychological support and this could be as a result of public stigma and self-stigma. 17 The second most frequently reported domain of concern in our cohort was that of logistical-related support, in particular play/activities for the children and need for academic support. However again only a minority requested professional assistance. Chari et al. reported that the benefits of play therapy lie in better illness adjustment and general mental well-being, enhanced coping, and normalization. 18 When encountered with a life-threatening illness like cancer, caregivers may not expect activity-/play-based therapy to be provided by the hospital and instead focus entirely on the clinical care. This may explain the discrepancy between the concern expressed and the need for help observed in this domain. 19 Similarly, school and academics take a back seat during treat- The third significant concern voiced in our caregiver cohort was benefits of the support group as perceived by the caregivers are a focus of interest and would be a follow-up to this study. Second, the reporting of emotional concerns as a major concern has made us sensitive to discuss and deliberate over psychological issues faced by caregivers and address the same in the support group meetings. This has also facilitated in disseminating evidence-based information and encourage families to seek professional psychosocial support when required and thereby help reduce stigma. Third, on a larger platform the support group could facilitate awareness building in schools and for teachers with regard to managing childhood cancers in order to warrant successful re-entry of children post completion of treatment.
This study is also not without limitations with regard to the sample, as the primary focus was to ascertain psycho-social needs of caregivers and their interest to join a support group. Since, the intent was to start Disha-Pediatric Caregiver Support Group as part of Childhood Cancer awareness month, the time frame for data collection was short.
In conclusion, we understand the there is a need for taking into consideration the concerns of caregivers to tailor make a support group. This study highlighted the needs of caregivers which were emotional, logistics related and concerns pertaining to informational needs.
Hence, the real challenge is on how we can channelize support and empower caregivers using evidence-based information to increase awareness and thereby provide adequate psychosocial support.