User survey of Nanny Angel Network, a free childcare service for mothers with cancer

Purpose The purpose of the present study was to determine user satisfaction with Nanny Angel Network ( nan ), a free childcare service for mothers undergoing cancer treatment. Methods All 243 living mothers who had used the nan service were invited by telephone to participate in an online research survey; 197 mothers (81%) consented to participate. The survey, sent by e-mail, consisted of 39 items divided into these categories: demographics, supports, use, satisfaction, and general comments. Results Of the 197 mothers who consented to receive the e-mailed survey, 104 (53%) completed it. More than 90% of the mothers were very satisfied with the help and support from their Nanny Angel. Many mothers mentioned that the Nanny Angel was most helpful during treatment and medical appointments, with 75% also mentioning that their Nanny Angel helped them to adhere to their scheduled medical appointments. However, 64% felt that they had not received enough visits from their Nanny Angel. Conclusions Satisfaction with the nan childcare provider was high, but mothers wished the service had been available to them more often. Our study highlights the importance of providing childcare to mothers with inadequate support systems, so as to allow for greater adherence to treatment and medical appointments, and for more time to recover.


INTRODUCTION
Many cancer patients with young children struggle with financial pressures, relationship stresses, and household responsibilities on top of their treatment side effects, resulting in negative psychosocial outcomes such as increased anxiety and depression [1][2][3][4] . Moreover, when a parent is diagnosed with cancer, children of all ages undergo significant stress, particularly when the parent experiences physical changes such as hair loss or is unable to engage in his or her usual child-related activities 5 . Accordingly, in comparison with other patients, parents of young children experience greater feelings of sadness and guilt while undergoing cancer treatment 6 , often struggling to balance their own needs against those of their children 7 .
More specifically, when mothers with young children undergo cancer treatment, they often struggle with finding the childcare that will allow them to attend medical appointments or to recover from surgery, chemotherapy, and radiation toxicities. Some women have supportive families or the financial means to pay for outside help, but many single mothers or families with a limited income encounter immense difficulty and stress in trying to find dependable care for their children.
In 2008, a charitable organization called Nanny Angel Network (nan) was launched in Canada by Audrey Guth, herself a cancer survivor and a mother, to provide free childcare to female cancer patients within the Greater Toronto Area. The goals of nan are to allow young mothers to attend appointments without the stress of finding childcare and to provide those women with some child-free time to themselves to relax and recover from the rigours of treatment. The privately funded nan program relies on the generosity of corporations, private foundations, and individual donors. At the time of the present study, nan was providing services only to mothers with cancer. Since then, nan has been developing a branch that seeks to provide childcare assistance to fathers with a cancer diagnosis.
Families are initially referred to nan by community partners such as the Canadian Cancer Society, pynk 8,9 , and Gilda's Club. Health care and social service professionals in oncology departments also serve as primary referrers for families. Families are not assessed for financial need by nan before they are assigned a Nanny Angel. Criteria for participation are n a confirmed cancer diagnosis in a mother with at least 1 child 12 years of age or younger, n active treatment that is currently ongoing or was completed within the preceding 3 months, and n residence in the Greater Toronto Area (because that region is currently the only one that nan services).
Before becoming a Nanny Angel, volunteers are required to have a minimum of 1 year of experience in caring for children. Many of the volunteers are teachers, nurses, and child life specialists. Some of the Angels are themselves cancer survivors. All potential volunteers must provide two reference letters indicating they are capable and qualified for the position, and must pass a vulnerable-sector police screening that indicates no past criminal activity. Appropriate applicants are then invited for a final interview conducted by the nan selection committee to evaluate the candidate's sense of responsibility, understanding of the position's requirements, and sensitivity to children's needs. Currently, only women are accepted as Nanny Angel volunteers, because nan users have mentioned that they feel more comfortable in the presence of another woman when they are ill and not fully dressed. After their acceptance to nan, each Nanny Angel must be certified in cardiopulmonary resuscitation and first aid, and must complete proprietary training in child safety and dealing with children's experiencing grief and loss. The entire process, beginning with receipt of the application and extending to completion of training, takes approximately 6-8 weeks. To date, nan has accepted 91 volunteers.
Once a volunteer has completed the requirements to become a Nanny Angel, she is matched with a family based on her experience, desire to work with certain age groups, location of the family, mother's schedule, and her personality, special abilities, and interests. The volunteer is expected to commit to at least 8 hours per month, ideally to the same family. The Nanny Angel arrives at the visit with age-appropriate activities provided by nan, which are specially selected to encourage engagement and to build trust with the child or children. Ideally, to optimize bonding, a single Nanny Angel is paired exclusively with one specific family; however, if schedules conflict, a second Nanny Angel is assigned.
Because cancer treatment often extends for 1 year or more, Nanny Angels develop intense relationships with their assigned families. A family is entitled to receive care until the mother is 3 months post-treatment. If a mother passes away, nan continues to provide care for the children for up to 1 year during the bereavement period.
In 2015, 8 years after the launch of nan, the organization reached a milestone: 10,000 hours of childcare provided to 300 families. At that point, the board of directors decided to formally evaluate nan to determine whether the organization was meeting the needs of its young mothers, and to address areas of the program that might require improvement. From a research perspective, it was of interest to the authors of the present paper to assess the extent to which the provision of free and accessible childcare increases a mother's adherence to medical appointments and recovery from cancer treatments. Such an assessment would help to determine whether such a service should be included as a recommended standard of care for cancer patients.

Survey Development
The study was approved by the Sunnybrook Health Sciences Centre Research Ethics Board.
Based on a literature review of satisfaction assessments of interventions and support services for cancer patients 10-13 , a decision was made to create an online questionnaire rather than to conduct telephone or in-person interviews. The online format maintains anonymity and requires the least amount of time from study participants. A committee of researchers and nan personnel drafted survey categories and objectives from topics that had been discussed by the nan Board of Directors during a formal review of the organization. Areas of particular importance to the committee were user satisfaction with the number of visits provided and the helpfulness of nan services at specific stages of the mother's illness.
From January to April 2015, the committee reviewed consecutive drafts of the questionnaire to evaluate it for clarity and breadth, and to eliminate any potential bias. A pilot study was not conducted. The final survey (Table i) contained 5 categories (demographics, supports, use, satisfaction, and general comments) and consisted of 39 items set up as Likert-scale multiple choice questions, with freetext fields that allowed participants to elaborate on their answers. It was estimated that completion of the survey would take approximately 10 minutes. The anonymous survey was administered online using Survey Monkey (Palo Alto, CA, U.S.A).

Participants and Study Design
In a telephone call, the nan program coordinator invited all living mothers who had used nan's services at any time up to 1 April 2015 to participate in the study. A follow-up e-mail message that included an introductory letter and survey link was sent in May 2015 to mothers who had expressed interest in participating. The introductory letter explained that participation was voluntary and completely anonymous, that survey completion time was estimated to be 10 minutes, and that completion would demonstrate consent. The program coordinator's contact information was provided in case questions arose. The survey remained open for completion until January 2016. E-mail reminders to complete the survey were sent by the program coordinator each month to all eligible mothers (because the identities of those who had already completed the survey were unknown).

Data Analysis
Descriptive statistics are reported using frequencies, percentages, and means with standard deviations. Bivariate analyses-using the chi-square and Fisher exact tests for categorical variables, the Wilcoxon rank-sum test for continuous variables, and Spearman correlation for ordinal variables-examined the relationships between various family characteristics and use of childcare services. The significance level for statistical tests was set at p = 0.05 (two-tailed). All statistical analyses were performed using the SAS software application (version 9.3: SAS Institute, Cary, NC, U.S.A.). All questionnaires with unanswered questions were included in the analysis, but the sample size for each question was adjusted accordingly. Comments in the free-text fields were grouped according to themes using standard qualitative data analysis techniques 14 .

RESULTS
At the time the study was conducted, nan had provided services to 300 families. Of the 243 living mothers, 197 (81%) expressed interest in participating after the initial telephone call made by the nan program coordinator, and of those 197 mothers, 104 (53%) completed the questionnaire. Eight women were excluded, because although they had registered for nan, they had not used nan childcare services within the specified study period.

Demographics
Table ii summarizes participant demographics. Mean age of the participants at diagnosis was 38.4 years (range: 26-52 years), and their mean age at the time of the survey was 41.3 years (range: 30-53 years). Mean age of the youngest child in the family at the time of diagnosis was 2.8 years (range: 0.08-11.5 years), and mean age of the oldest child in the family was 5.8 years (range: 0.17-27 years).
English was named as the first language of 83% of participants. The remaining 17% of participants spoke 10 distinct first languages other than English. A very good understanding of spoken English was reported by 90% of participants; another 9% reported that they understood spoken English well, and only 1% reported that they understood spoken English somewhat well. With respect to written English, 92% of participants reported that they understood it very well; the remainder indicated that they understood it well. All but 1 participant completed the survey without assistance.
Upon comparing the demographics of all mothers within the nan database with those of the mothers who completed the survey, no significant differences in language proficiency, education, age of children, treatment, and relationship status were noted.

Support System at Diagnosis and Treatment
When participants were asked whether, aside from issues related to their cancer and treatment, they felt overwhelmed by their other responsibilities, 85% of the 85 responders said yes, 13% said somewhat, and 2% said no. According to more than half the participants (58%), the most overwhelming responsibility at the time of their cancer diagnosis, treatment, and recovery was childcare; much smaller percentages of the respondents reported that household duties (12%), finances (12%), employment (10%), and relationship with spouse or partner (8%) was the most overwhelming responsibility. When asked if they could rely on family members or friends to help with their responsibilities at the time of diagnosis and during treatment, 19% of the 85 respondents replied that they did not require outside help; 64%, that they could somewhat rely on family and friends, but that it was not enough; and 18%, that they had no assistance and needed outside help. When asked to specify who assisted, 54% of respondents said that they received help from a friend; 52%, from a parent; 24%, from in-laws; 28%, from siblings; and 13%, from other family members. The help received from "others" (as reported by 8% of respondents) included stepchildren, hired nannies, churches, and community support groups.
Of 68 respondents, 32% replied that their spouse or partner was available as much as they needed at the time of diagnosis and during treatment; 58%, that the partner was somewhat available, but not enough; and 10%, that their significant other was not available at all, with several participants attributing their spouse or significant other's unavailability to having to work longer hours because of financial difficulties since the cancer diagnosis. Some of the mothers did not have family living in Canada. Participants also discussed the difficulties of asking for help and the challenge of connecting to their peers who were not battling cancer.
In 28% of cases, the responding mother had all her children enrolled in a full-time program; in 6% of cases, the children were enrolled in a half-day program; in 11%, the children were in a program some days of the week; and in 56% of cases, 1 or more children were at home all day, every day. Childcare issues had caused 17% of respondents to miss appointments for treatment or follow-up. The exact number of missed appointments was not collected. However, the need to miss medical appointments was not significantly different for mothers who indicated that they had adequate assistance from family and friends than for mothers who needed outside supports (p = 0.21). Similarly, women who ranked childcare as the most overwhelming obligation and women whose children were not in daily programming did not miss more appointments than their counterparts (p = 0.25, p = 0.15). There was also no significant difference in Nanny Angel use between those two groups (p = 0.14). However, many women commented that they were not forced to miss medical appointments because they could rely on their Nanny Angel for childcare. That sentiment was also reflected in the quantitative data, because 87% of mothers indicated that the childcare assistance from their Nanny Angel encouraged them to adhere to their medical appointments. Respondents also mentioned in the comments that,  Table iii summarizes the responses outlining how women first learned about nan and how many times and over what period of time they made use of nan services. On average, most mothers used nan services 1-5 times during their diagnosis, treatment, and recovery periods, with some mothers having more than 20 visits from their Nanny Angel. Use of nan services was not significantly different when respondents with lower (<$49,000) and higher (>$150,000) net incomes were compared (p = 0.28). There was also no correlation between lower income (<$49,000) and the desire for more visits from a Nanny Angel (p = 0.98). Women who were single and never married, separated, divorced, or widowed made more use of nan childcare services (p = 0.09). However, in comparing single parents with parents in a relationship, we observed no significant differences in satisfaction with the Nanny Angel at the time of diagnosis (p = 0.28), treatment (p = 0.56), or recovery (p = 0.66). Additionally, use of nan was not significantly different for families with 2 or more children and for those with 1 child (p = 0.35). The ages of the youngest and oldest children within a family were not significantly associated with the frequency with which nan childcare services were used (r s = 0). Women with breast cancer made use of Nanny Angels less frequently than did women with all other cancer types (p = 0.01).

Use of NAN
Nearly all users had a positive experience with nan, with 82%, 87%, and 83% respectively of the 69 respondents to this question indicating that they found the Nanny Angel to be very helpful at the time of diagnosis, treatment, and treatment recovery. Of responding mothers, 86% reported that their Nanny Angel allowed them to rest and recuperate while taking care of their children, and 94% reported that their Nanny Angel was very well prepared for her visits to their home, because activities for the child or children were brought to the visit. When participants were asked about the period during which their Nanny Angel was most helpful, 4% said at the time of diagnosis; 41%, during treatment; 24%, during recovery; and 27%, throughout the whole process; 4% did not find their Nanny Angel to be helpful. The number of visits provided by the Nanny Angel was claimed to be sufficient by 36% of respondents; 64% indicated that they would have liked more visits.

General Comments
When provided with the opportunity to elaborate on the most helpful aspect of nan, many mothers commented that they felt relieved that childcare was being provided for free at a time when funds were very limited. Participants mentioned that they gained peace of mind knowing that all Nanny Angels are screened and qualified. When asked to comment on ways in which nan could improve, many mentioned "providing more visits each week," but did not specify how much more of the service would be needed. One participant recommended that nan should provide services "in the outskirts of Toronto for friends we know that are battling cancer outside the [Greater Toronto Area]."

DISCUSSION
Although in the past, chemotherapy and cancer treatment required admission to hospital, medical advancements have increased the availability of ambulatory treatments 15 . However, a consequence of that change is that the presence at home of young mothers creates an expectation by their families that they will try to maintain a sense of routine and normalcy at home despite frequent medical appointments, often daily treatments, and treatment side effects such as profound fatigue 16 .
In a study conducted by Peters-Golden, healthy women were asked about their perceived supports if they were to one day be diagnosed with cancer 17 . Interestingly, most women were confident that, in a time of need, they would have a strong support system. However, in that same study, women with cancer indicated that their support systems did not materialize to the extent they had expected. Thus, it is not surprising that more than 80% of participants in our study felt that they were not receiving enough help and support from family and friends. Most of those women also stated that their significant others were not available to help as much as they would have liked. Many attributed the unavailability to the fact that the significant other was required to work extra hours, an unfortunate familiarity to families with an ill parent, because numerous financial burdens arise with the need to pay medical bills, hire outside help, and make up for the lost income of the ill spouse 1 . The additional expenses can become very burdensome to both the patient and family 18 and can cause strain in a marriage 19 . In an effort to fulfil the needs for support, nan provides a Nanny Angel free of charge. Often the Nanny Angel is also a cancer survivor who can establish a supportive, understanding, and mentoring relationship with the young mother. In our survey, 58% of mothers indicated that their largest stressor after their diagnosis was childcare. At times, they had to choose either to bring their children along to the hospital or to skip their appointment. In the present study, 17% of mothers chose the latter course. Similar findings were also demonstrated in a study which found that, because of a lack of childcare, women infected with hiv who had children missed a higher percentage of their medical appointments than did men 20 . However, when free in-hospital childcare was provided to the women, adherence to their scheduled visits significantly improved.
The success of nan in achieving its goals is indicated by the fact that 87% of mothers said that their Nanny Angel allowed them to adhere to their appointment schedules. Mothers were also grateful to their Nanny Angels for occupying their children with games and activities after treatments, giving the mother time to recuperate and regain her strength. Especially for women who did not have family in Canada (or as those nan users would say, "automatic support"), the Nanny Angel became the only person on whom they could rely.
Although various studies have concluded that it is essential that support systems for parents with cancer include childcare services 21-23 , a thorough literature review failed to uncover a description of any services similar to nan for cancer patients. A meta-analysis completed in 2016 that analyzed various psychosocial interventions and support systems for parents with cancer and their families reported interventions focused on increasing family communication, enhancing child adjustment, improving mood, and reassuring parenting skills, with no evaluation of the services and no description of any childcare services 24 . Moreover, although interventions were created to provide on-site childcare in clinics for patients undergoing hiv treatment, a home service was never included 20 . All those observations underscore the uniqueness of nan.
The survey reported here represents the first formal evaluation of nan, and the results show that most of the Network's users were satisfied with the services provided throughout the periods of their diagnosis, treatment, medical appointments, and recovery. Nanny Angels were used mainly while patients underwent treatment, and single women made use of the services more often than did women in a relationship. That finding is similar to reports in earlier publications that single women with cancer have increased illness-related pressures and require stronger support systems 25 . Interestingly, mothers who were diagnosed with breast cancer used nan less frequently than did mothers with other types of cancer-likely because they were healthier or were receiving less debilitating treatments.
Nevertheless, more than 60% of users wished that they could have had more visits from their Nanny Angel. We speculate that, in some cases, that desire was the result of a delay in referral to nan, together with the lag time needed to process the request. However, the number of nan volunteers-and particularly volunteers with a large number of available hours-is also insufficient for the number of families that reach out to nan. Understandably, many of the volunteers are unable to provide a greater number of hours to nan. In the future, nan will attempt to provide additional Nanny Angel visits in areas in which volunteers are available to families who require them. Over the next few years, nan hopes to increase its volunteer database to provide service hours sufficient to ensure that no mother need be turned away. Another important finding from our study is that almost 20% of mothers who use nan appear to have adequate support from family and friends. Although all young families dealing with cancer could ideally benefit from nan's highly skilled volunteers, nan will make more effort in the future to prioritize services to mothers who do not have available support.
Given that young children of cancer patients are at increased risk for anxiety and stress-related disorders 26 , one of nan's goals is to positively affect the long-term emotional and psychological development and well-being of those children. Of responding mothers, 94% felt that their Nanny Angel came to their home well-prepared with age-appropriate activities. Many commented that the consistency of having the same Nanny Angel come to their home each week helped the children to bond with the Nanny and generally feel more secure. Those findings are consistent with the results of a study conducted in 2006, which demonstrated that children with consistent social support adjust better to the fact that their parent is unwell 27 .
Our study has several limitations. Our questionnaire, although modelled after questionnaires for similar surveys, was not specifically validated. Given that the survey was completed anonymously, we could not corroborate the collected data against the nan records. However, when looking at the 96 participants in the study, we observed no significant differences in demographics between the respondents and the 243 living mothers in the nan database. Despite the anonymity of the survey, there remains a possibility of social desirability bias from respondents who might have felt indebted to the program or who might have to use the program again. It is also possible that, compared with nonparticipants, women who chose to participate in the study might have been more inherently satisfied with nan. Also, some respondents might have completed the survey up to 8 years after their nan experience, with the associated potential for recall bias. Another limitation of the study is that the data represent the perceptions of young mothers with cancer who live in an urban area, potentially affecting the generalizability of the findings. It is also important to note that the children's experiences with nan services were not analyzed, because the focus of this study was exclusively the experiences of the mothers. The children's interaction with their Nanny Angel and the Nanny's ability to provide emotional support to the child is an important area of research that we hope to pursue in the future. The bereavement program that enables Nanny Angels to continue to visit children in their home for 1 year after the parent passes away could be particularly beneficial, although given that our study did not include the spouses of deceased parents, no survey data are available to confirm that hypothesis. Thus, the impact of nan on the mental health of the children who receive its services during the bereavement period will be included in the next study.

CONCLUSIONS
In the Greater Toronto Area, nan has provided service to hundreds of families in the form of free childcare to mothers diagnosed with cancer. As demonstrated in the present study, nan is fulfilling an important and unique need within the community. Our study specifically sheds light on the importance of providing childcare services that enable mothers with childcare problems to attend appointments and treatments and to have at least one of their many sources of stress significantly reduced. Given the shortage of appropriate volunteers, childcare services might more efficiently be provided at the cancer centre; however, such services would not preclude the need for an organization such as nan to relieve some of the childcare burden at home for mothers recovering from treatmentrelated side effects. It could well be argued that provision of childcare to parents dealing with cancer treatment and recovery should be considered part of the standard of care for patients without alternative supports. That recommendation could well extend to other significant illnesses-such as trauma, mental illness, or organ transplantation-affecting young parents.
The outcomes of our study have also outlined important areas for future research, such as the effect of nan's volunteers on the mental state and development of children seen during the parent's treatment and recovery, as well as during bereavement.
It is hoped that this article will raise awareness of the nan program, attract donors, and increase the growth of the volunteer database to permit the expansion of nan's services. Within the next several years, nan hopes to provide Nanny Angel services to mothers living in remote areas of Ontario. Recently, nan developed a 2020 vision for the program, which consists of growing the Network nationally. As of January 2016, efforts have also been made to create a proprietary booking system to streamline service delivery, thus allowing the program to grow systematically. Further, nan is also currently in the process of devising a new sustainable funding initiative called "Angels Spread Their Wings" so that the organization will never have to turn away any mother in need of childcare.