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!!!!!

Non-medical Related, Supportive Information Needs for Parents

with Newly Diagnosed Sick Children

!Ryerson University

Submitted to:

Dr. James Tiessen

December 12th, 2013

!Submitted by:

Peter (Yi Nan) Zhang

500597806

!!

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Abstract

! Quality, timeliness, and relevancy of non-medical related supportive information are

critical for parents with newly diagnosed sick children.

Objectives: This project had two broad objectives. The first is to identify the supportive

information parents are unaware of, and the best timing to disseminate such information. The

second was to investigate links between parent characteristics and satisfaction with information

provided.

Methods: A quantitative methodology is adopted in order to find out descriptive statistics

on the informational gap existing in parental groups. Two paper-based surveys were developed

and reviewed by members of the Family Advisory Console from The Hospital for Sick Children

(SickKids). These surveys contain close ended demographic questions, and checklists of existing

informational knowledge and gaps (see Appendix). Open ended questions are also provided to

find out additional information needs in the two cohorts (see Appendix). Parents are asked to rate

their overall satisfaction with the amount of information they received. The surveys were

distributed by SickKids’ clinical staff at in-patient settings, in the oncology and haematology

units and clinics. Over the time period of 5 days, 34 responses were collected from the oncology

cohort, while 20 were collected from the haematology cohort.

Conclusions: The length of exposure to the management of the child’s condition, the

timing of information given, and availability of financial and supportive information are the

central factors that effect the quality, timeliness, and relevancy of non-medical related supportive

information.

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Table of Content

!Abstract 2

Table of Content 3

Introduction 4

Literature Review 5

Retrieval Methods 5

Parental Involvement in Paediatric Care 6

Challenges Faced by Parental Caregivers 7

Analysis of Stressors 8

Informational Needs 9

Informational Barriers 10

Literacy barriers 10

Information overload 10

Accessibility of information 11

Methodology 12

Data Collection 12

Analysis 12

Data Analysis: Oncology Cohort 13

Data Analysis: Haematology Cohort 19

Conclusion 25

Reference 26

Appendix A— Synopsis of Verbatim Responses 29

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Introduction

Canada has a tradition of patient-oriented medicine practice, and such practice involves

keeping a close partnership between the patients and the health care professionals (Ygge &

Arnetz, 2001). This was advocated both in the US and England as a means of improving quality

of healthcare and treatment outcomes (Hummelinck & Pollock, 2006). The availability of

accurate and comprehensive medical related information are regarded as integral parts of

patients’ rights, and a precondition for a successful partnership between patients and healthcare

professionals (Hummelinck & Pollock, 2006). Despite efforts to disseminate information

formally and informally through the healthcare system, dissatisfaction regarding the direct

communication of information in clinical encounters has been widespread (Minaya et al., 2012).

Hummelinck & Pollock (2006) suggested that patients are dissatisfied with the “amount, quality

and consistency of information about their condition and treatment provided to them by the

professionals”. The complexity of communication between patients and healthcare professionals

are further escalated in the paediatric setting, where parents often act as the intermediary

between the child and the healthcare team.

Other than the amount, quality and consistency of medical information, healthcare

professionals should be aware of the source of stress and categories of challenges faced by

parents in the paediatrics setting. For example, a hostile response by parents during therapeutic

communication could have multiple causes, and only by identifying and providing the right

guidance and support, can the real causes of stress and barriers of communication be resolved.

Evidences had accumulated in three categories of informational barriers: literacy barrier,

informational overload, and the accessibility of information. These factors must be sensitively

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considered when constructing educational materials for parents in the paediatric setting.

However, the creation of such material which encompasses a variety of parental needs is

difficult, since parental responses under difference stressors are highly unpredictable

(Hummelinck & Pollock, 2006). Moreover, several studies have reported that “health

professionals often remain unaware of patients’ treatment preferences and consistently

underestimate bother their information needs and desire for involvement in medical consolation.”

(Hummelinck & Pollock, 2006, p. 229). This leads to an even greater demands for needs-

assessment on the part of healthcare facilities.

This paper pinpoints few theoretical approaches of defining and identifying parental

involvement in paediatric healthcare setting, and challenges faced by parents. Analysis of

stressors and parental informational needs are also highlighted in the literature review. Lastly,

this paper presents the findings from surveys conducted in two paediatric settings (oncology &

haematology units) regarding ancillary (non-medical related) informational gaps.

Literature Review

!!Retrieval Methods

! A search of research literature in the Google Scholar, OVID, PubMED and CINAHL

databases produced 35 articles . The combination of search terms used were: “information

needs”, “caregivers”, “paediatrics”, “oncology”, “quality of care” “meta-analysis” & “literature

review”. 17 articles were excluded due to irrelevancy and non-matching demographics.

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Parental Involvement in Paediatric Care

! Conventional patient care involves direct communication and collaboration between

healthcare professionals and patients, and patient autonomy is treated with special respect.

However, in the case with paediatric care where the patients might be deemed incompetent to

make medical treatment choices, parents become important intermediaries between the patients,

the medical staff, and the final decision makers (Ygge & Arnetz, 2001). In addition, parental

caregivers are often ladened with emotional, physical, social and financial burdens involved in

the patients’ care, and they contribute to patients’ adherence to the treatments (Minaya et al.,

2012).

The Platt Report (1959) had identified that children’s separation from parents could stunt

their character and mental development. Given the sensitive and stressful circumstance when a

child is placed in a hospital environment, parental guidance and presence are ever more essential

in the successful care of the child. Other researchers such as Callery (1997) also emphasize the

importance of parental involvement in the quality and outcome of care for children. Furthermore,

from a moral and legal perspective, parents have the responsibility for the welfare of their

children, and therefore should be actively involved in the care process (Ygge & Arnetz, 2001).

Parental involvement also leads to the parents being more satisfied about the quality of care and

the hospital experience, leading to a positive feedback loop (Ygge & Arnetz, 2001).

!

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Challenges Faced by Parental Caregivers

! During a hospital stay, many stressors such as uncertainty of treatment, guilt, and

burnout, that can challenge parental caregivers’ emotional and physical ability in managing their

children’s care. These stressors can lead to deleterious mental and physical health problems for

the caregivers (Goode, Haley, Roth, & Ford, 1998), and subsequently undermine the caregivers

role in the care of paediatric patients. Depression, emotional distress, and general anxiety are

some common complaints among parental caregivers, and they can sometimes lead to an

increased risk of caregiver mortality in the extreme cases (Minaya et al., 2012). Generally,

quality of life would be severely affected (Minaya et al., 2012).

Two demographic factors are shown to affect the level of stress and health sequalae

experienced by paternal caregivers: age and gender. Age is “negatively related to subjective

burden, impact on schedule, role overload, depression, and mood disturbance” (Minaya et al.,

2012). This can been explained either by the caregivers’ adaptability as their children’s condition

persist through the years, or by the caregivers’ improving cognitive and multitasking abilities.

Meanwhile, gender is well supported by research as a defining factor for the degree of negative

impacts a caregiver encounters. Women are disproportionally afflicted with anxiety, role

captivity, emotional distress, depression and impact on health (Minaya et al. 2012), and Minaya

et al. (2012) also found significant differences between men and women in their quality of life

scores, with women bing more negatively affected. This discrepancy seems paradoxical given

that 39% of caregivers are males (the percentage is higher in the case of cancer caregiving)

(Minaya et al. 2012). Several explanations are given, one involving gender-role socialization,

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and the other states that male caregivers are likely to perceive their experience in caregiving

beneficial to the family unit, thus reporting a higher level of quality of life (Kim, Baker &

Spillers, 2007).

Analysis of Stressors

! There are many theoretic models to understand some of the difficulties experienced by

parental caregivers. Atwood (1989) identified three stressors faced by caregivers: a)

Intrapersonal stressors related to psychological factors such as uncertainty and ineffective

coping; b) Interpersonal stressors, which arise when dealing with multiple staff members or

other caregivers; c) Extrapersonal stressors such as financial distress, and transportation

problems. Another classification is between objective caregiver strain, and subjective

caregiver burden, the first category of stress relates to tasks and functionality (Archbold,

Stewart, Greenlick, & Harvath, 1990), while the latter relates to emotional reaction towards the

caregiving role (Pinquart & Sorenson, 2003).

Despite of the usefulness in categorization of stressors provided by the aforementioned

frameworks, they are very linear and one-dimensional in providing medical practitioners

guidelines in helping parental caregivers. An interactionist approach to role theory was proposed

by Schumacher et al. (2008), as an alternative view to caregiver stressors. This approach views

caregivers as fulfilling certain roles, and three components determine whether a role transition

from parents to caregivers will be successful: caregiving demand (goal-oriented pattern of

behaviour) , mutuality (interpersonal aspects and support network) , and preparedness

(resource obtained, and adaptive behaviours). Mary & Scherbring (2002) reported a significant

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inverse relationship between preparedness and burden score; as preparedness increase by one-

unit, burden decrease by 17%. Moreover, meta-analysis by Sorenson et al. (2004) suggests that

supportive interventions that increase preparedness (e.g. timely information), foster mutuality

(e.g. effective communication), and solve caregiving demand (e.g. home-care training), were

effective in reducing caregiver burden among caregivers from heterogeneous chronic illness

populations.

Informational Needs

! In a systematic literature review of caregiver informational needs, Adams, Boulton &

Watson (2009) point out that, in order of importance, caregivers identified four kinds of

information they viewed as crucial: treatment-related information, prognosis-related information,

coping information, and information on home-care. In addition to medical related information,

paediatric oncology caregivers want to know about resources both in the community and the

hospital, and they identified financial assistance information as valuable (James & Johnson,

1997). Adams, Boulton & Watson (2009) corroborated this last view by stating: “family

members have a wide range of information needs…oncology practice may need to pay greater

attention to proving information on non-medical supportive care topics (to caregivers)”.

!!!

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Informational Barriers

!Literacy barriers

Since parents are often the intermediaries between the children and healthcare

professionals, information package should be tailored towards the parents’ literacy level and

understanding. However, paediatricians in the United States rarely screen the parental caregivers

for reading abilities (Davis, Mayeaux, Fredrickson & Bocchini, 1994), and Davis et al. (1994)

found that two-thirds of parents they studied could not read at a level more than ninth grade, but

the reading materials provided by the hospital are not written at that level. Moreover, many

parents are discouraged by their experience of talking to physicians about diagnosis, due to the

extensive use of medical jargons (Hummelinck & Pollock, 2006). Information needs are shaped

by caregivers level of confidence in dealing with their children’s condition (Hummelinck &

Pollock, 2006), and if caregivers cannot understand and process information given to them, their

ability, competency, and confidence would be severely hampered.

Information overload

When dealing with multidisciplinary teams, parents reported being overwhelmed by the

amount of information they receive, particularly at the time of diagnosis (Hummelinck &

Pollock, 2006). This contributed to caregivers’ finding it difficult to process the information

given and express their information needs, and this situation is further exacerbated because

parents are reluctant to interrupt “busy nurses and doctors” when they did formulate any

questions (Schubart, Kinzie & Farace, 2007). Distraught by the lack of information or the fear of

insufficient information, some parents resort to the media and Internet as a alternative route for

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information (Hummelinck & Pollock, 2006; Schubart, Kinzie & Farace, 2007). This behaviour is

understandable but worrisome, since the quality and trustworthiness of such sources could

further “overload” the caregivers or create unnecessary stress.

Accessibility of information

With “information overload” in mind, it is not hard to imagine caregivers forgetting

information explained to them. Bailey & Caldwell (1997) found that “parents do not always

remember what has been explained to them, particularly in the stressful hospital environment”.

Parents also expressed the need for access to a personal advisor who knew their child and can

spend time with them to answer questions, in addition to written or verbal information (Smith &

Daughtrey, 2000). Therefore, multimedia information packages should be given to parents in

order to facilitate retention of knowledge, thus reducing caregiver stress and anxiety.

! In conclusion, parental involvement in paediatric care is vital to the health outcomes of

the patients, since parents act as advocates and intermediaries during the care process. Parents

are placed under immense stresses, and they often suffer negative physical and emotional

consequences from these stressors. Such stressors can be categorized into: intrapersonal,

interpersonal, and extrapersonal, and effective dealings of these stressors can reduce caregiver

burdens. Lastly, by providing appropriate and timely information, the overall stress of parents

can be greatly reduced. However, literacy barriers, information overload, and accessibility of

information are identified as informational barriers.

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Methodology

!Data Collection

A quantitative methodology is adopted in order to find out descriptive statistics on the

informational gap existing in parental groups. The purpose of the surveys is to identify parents’

familiarity to supportive services provided, and recognize the method of delivery parents prefer

and opportune timing of this non-medical related supportive information. Two paper-based

surveys were developed and reviewed by members of the Family Advisory Console from The

Hospital for Sick Children (SickKids). These surveys contain close ended demographic

questions, and checklists of existing informational knowledge and gaps (see Appendix). Open

ended questions were also provided to find out additional information needs in the two cohorts

(see Appendix). Parents are also asked to rate their overall satisfaction with the amount of

information they received.

The surveys were distributed by SickKids’ clinical staff at in-patient settings, in the

oncology and haematology units and clinics. Over the time period of 5 days, 34 responses were

collected from the oncology cohort, while 20 were collected from the haematology cohort.

Analysis

! Survey data were entered into SPSS Version 21, and close ended questions were coded

and labeled, while open ended questions are collected into verbatim report that is not included in

the SPSS analysis. Descriptive statistics of the demographic information are charted, and

checklists responses are measured and ranked in order of informational awareness (i.e. the least

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known information topic is placed on the top of charts). Finally, correlation and regression

analysis are conducted in order to find out possible relationships between demographical

characteristics/specific informational gaps and parental satisfaction with amount of supportive

information provided.

Data Analysis: Oncology Cohort

The survey yielded 35 responses, 1 was discarded due to incomplete information.

Frequency distribution of each survey questions will be discussed first, following synopsis of

verbatim qualitative data (see Appendix).

Leukemia/Lymphoma, and Solid Tumour account for 76% of total respondents. There are

only two respondents that didn’t selected English as their preferred language to receive health

information, and both of them had health professionals to help translate the survey.

!

!!!!!

!

Leukemia/Lymphoma-

35%-

Solid-Tumour-41%-

Brain-Tumour-15%-

Blood-and-Marrow-

Transplant-9%-

Healthcare)team)in)most)contact)with)child's)care)

English(94%(

Arabic(3%(

Spanish(3%(

Prefered&language&to&receive&health&informa3on&

Figure 1: Patient Diagnoses (n=34) Figure 2: Preferred Language (n=34)

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79% of Oncology patients were newly diagnosed (between 2010 to 2013), and they

visited most frequent weekly (41%) and every 3 months (38%). “Year of diagnoses” is connected

with general satisfaction with the amount of information received. The more recent the diagnosis,

the better rating for satisfaction level. This correlation might be brought about by the freshness of

information given.

! Most parents come from more than 10 km away from SickKids, and this does not effect

the satisfaction with the amount of information given. However, traveling and parking

arrangement information should be distributed to parents, as 45% (adjusted figure) of them do

not know about parent multi-use/long stay parking passes.

!

!

!!

41%$

15%$

38%$

6%$0%$

5%$

10%$

15%$

20%$

25%$

30%$

35%$

40%$

45%$

Weekly$ Monthly$ Every$3$months$ Every$year$

Freqency(of(visit(to(SickKids(

0%#

10%#

20%#

30%#

40%#

50%#

60%#

70%#

80%#

90%#

2005-2010# 2010-2013#

Year%of%diagnoses%

Figure 3: Patients’ Year of Diagnoses (n=34) Figure 4: Patients’ Frequency of Visits (n=34)

! of !15 30

! Compared to the results in the Haematology group, the Oncology group display similar

familiarity with clinical/medical related information (i.e. IV room, contact number of on-call

doctor, etc.). The lack of contact with social worker contribute negatively to parental information

satisfaction, and written feedbacks confirmed this complaint. The top three items that need to be

disseminated are: map of the clinic and hospital, the location of satellite hospital, the availability

of Child Life Specialist. These three items overlap with findings in the Haematology group.

!

Table 1: Information at time of diagnosis

Referring back to the frequency in which parents visit SickKids, 41% of parents visit

weekly. The top three informational needs identified in Table 2 correspond well with frequency

of visits (i.e. Laundry facilities on 4th floor, Parent multi-use/long stay parking passes, Late

night restaurants at hospital).

Around  the  +me  of  diagnosis  did  someone  explain  the  following  to  you?  n=34No Yes Not  Sure N/A

A  map  of  the  clinic  and  hospital   39% 39% 15% 6%The  tunnel  to  Princess  Margaret  Hospital 35% 29% 18% 18%The  loca@on  of  satellite  hospital   27% 58% 3% 12%The  avaliablity  of  Child  Life  Specialist   26% 71% 3% 0%Interlink  nurse   21% 71% 9% 0%The  avaliablity  of  clinic  pharmacist 21% 71% 9% 0%The  availability  of  clinical  die@cian 15% 79% 6% 0%The  loca@on  or  color  of  pod   15% 76% 3% 6%Cujo's  room   12% 68% 3% 18%  Who  the  social  worker  is   9% 91% 0% 0%Finger  Poke  room   9% 82% 6% 3%Day  hospital  registra@on   9% 76% 3% 12%Clinic  registra@on  process   6% 94% 0% 0%IV  room   6% 79% 9% 6%Clinic  contact  phone  number  and  aSer-­‐hours  phone  number  for  on-­‐call  doctor     6% 91% 0% 3%

 Who  the  contact  nurse  is   3% 97% 0% 0%

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!

Table 2: Information familiarity around the time of diagnosis

Satisfaction level is high (36% “very good”,

52% “excellent”), and this might be due to frequent

visits resulting in more contacts with medical/support

staff. High cure rates of paediatric cancer (75%) can

also reduce stress level of parents, leading to better

absorption of information.

!!

Top items are: YMCA on Shutter Street-free use for parents, Northern Health Travel

Grant, Carepages or Caringbridge, website/blogs, SickKids Theatre, Kids Health website (Table

3). These can further be categorized as “transportation resource needs” and “multimedia resource

Around  the  +me  of  diagnosis,  did  someone  tell  you  about  the  following  services?  n=34

No Yes Not  Sure N/A

Laundry  facili@es  on  4th  floor 52% 35% 10% 3%

Parent  mul@-­‐use/long  stay  parking  passes   40% 43% 7% 10%

Late  night  restaurants  at  hospital   39% 48% 6% 6%

Meal  train  purchase  for  parents   29% 61% 6% 3%

Free  Wi  Fi   19% 74% 0% 6%

In-­‐pa@ent  procedures/registra@on   7% 83% 7% 3%

Parent  fridge  and  microwave 0% 97% 0% 3%

52%$

36%$

6%$

6%$

0%$ 10%$ 20%$ 30%$ 40%$ 50%$ 60%$

Excellent$

Very$good$

Good$

Fair$

Overall'sa)sfac)on'with'the'amount'of'informa)on'about'people,places'and/or'services'received'at'diagnosis'

Figure 5: Overall satisfaction level (n=34)

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needs”. Research indicates that multimedia enhances information retention, therefore should be

developed and distributed.

Table 3: Familiarity with supportive service & preferred timing of information

Did  someone  explain  the  following  suppor+ve  services  to  you?  When  is  the  best  +me  to  get  this  informa+on?  n=34

No YesNot  Sure N/A

At  Diagnosis

1st  month  3  months

 YMCA  on  ShuYer  Street-­‐free  use  for  parents 74% 9% 6% 12% 23% 65% 12%

 Carepages  or  Caringbridge  website/blogs 65% 18% 12% 6% 30% 57% 13%

 SickKids  Theatre 53% 35% 6% 6% 22% 67% 11%  Kids  Health  website 50% 35% 12% 3% 41% 48% 10%

 Northern  Health  Travel  Grant 44% 6% 6% 44% 57% 39% 4%

 Parent  support  programs  in  your  community

41% 44% 9% 6% 42% 42% 15%

 Nearby  hotels  with  special  rates 35% 21% 3% 41% 70% 30% 0%

 EI  Caregiver  Benefit 35% 47% 6% 12% 74% 22% 4%  OPACC  &  Parent  Liaison   32% 44% 18% 6% 41% 59% 0%  Marnie'  Place  (4th  floor) 30% 52% 9% 9% 25% 71% 4%  Employment  benefits 30% 45% 9% 15% 69% 27% 4%

 Ronald  McDonald  House 24% 29% 3% 44% 82% 18% 0%

 Starlight  Room  (9th  floor) 21% 74% 3% 3% 13% 80% 7%

 Camp  Ooch  at  SickKids 21% 76% 0% 3% 36% 57% 7%  Access  to  translators 21% 15% 0% 65% 88% 12% 0%

 Canadian  Cancer  Society  Transporta@on  program

21% 59% 3% 18% 65% 35% 0%

 Canadian  Cancer  Society  Family  Transporta@on  Reimbursment  

18% 65% 9% 9% 61% 36% 4%

 Interlink  Nurse  visit  to  child's  school 6% 65% 9% 21% 33% 56% 11%

 POFAP  Financial  Assistance  through  POGO 3% 91% 3% 3% 64% 32% 4%

! of !18 30

Parents would like to know more about programs and organizations after the initial

diagnosis stage, and they show a equal preference for “with in 1st month” and “within 3 months”

(Table 4).

Table 4: Familiarity with programs and organizations & preferred timing of information

Did  someone  explain  the  following  programs  and  organiza+ons  to  you?  When  is  the  best  +me  to  get  this  informa+on?  n=34

No Yes Not  Sure At  Diagnosis 1st  month  3  months

Candle  Lighters 79% 9% 12% 12% 42% 46%

Wellspring  Cancer  Support  Centres 76% 3% 21% 24% 44% 32%

Camp  Quality 74% 21% 6% 12% 38% 50%

Childhoods  Cancer  Canada 70% 24% 6% 23% 38% 38%

Gilda's  Club 70% 21% 9% 8% 46% 46%

Million  Dollar  Smiles 68% 24% 9% 8% 46% 46%

Starlight  Founda@on 59% 29% 12% 8% 46% 46%

Camp  Trillium 58% 39% 3% 12% 38% 50%

Hearth  Place  (Oshawa) 56% 3% 41% 13% 46% 42%

Leukemia  Lymphoma  Founda@on 41% 24% 35% 21% 50% 29%

Make-­‐a-­‐Wish 26% 71% 3% 11% 46% 43%

Camp  Ooch 24% 71% 6% 7% 48% 44%

Canadian  Cancer  Society 21% 73% 6% 23% 46% 31%

Children's  Wish  Founda@on 19% 78% 3% 11% 46% 43%

65%$ 68%$

47%$

74%$

18%$

56%$

0%$

General$handouts$

Pa7ent$binder$

Online$(website)$

Verbal$informa7on$from

$contact$

Parent$to$Parent$communica7on$

ECmail$

Other$

Prefered&method&to&receive&informa0on&

28%$

44%$

22%$

3%$ 3%$0%$

5%$

10%$

15%$

20%$

25%$

30%$

35%$

40%$

45%$

50%$

Excellent$ Very$good$ Good$ Fair$ Poor$

Overall'sa)sfac)on'with'the'amount'of'informa)on'about'suppor)ve'

services,'programs'and'organiza)ons'

Figure 6: Preferred method to receive information (n=34) Figure 7: Overall satisfaction (n=34)

! of !19 30

Data Analysis: Haematology Cohort

The survey yielded 20 responses, and frequency distribution of each survey questions

will be discussed first, following synopsis of verbatim qualitative data.

The survey respondents consisted of mostly Sickle Cell disease, general haematology,

and bone marrow failure patients. Medical information resources, organizations, and support

group information should be prioritized, but not limited to these three groups. English is the

preferred language among respondents (100%).

! 30% of the respondents live greater than 50 km away from SickKids, and 65% live

between 10 km to 50 km away. This indicates that driving would be a primary mode of

transportation, thus parking spaces around SickKids or discounted hospital parking spots should

be identified to the parents.

Only 10% of the respondents visit SickKids weekly, which means many parents do not

have much chance to ask questions directly to the medical staff.Furthermore, without proper

Sickle'Cell'40%'

General'Haematology'35%'

Bone'Marrow'Failure'15%'

Thalassemia'5%'

Thrombosis'5%'

Healthcare)team)in)most)contact)with)child's)care)

5%#

65%#

30%#

Distance)from)home)to)SickKids)

Less#than#10#km#

10#km#1#50#km#

Greater#than#50#km#

Figure 8: Patient Diagnoses (n=20) Figure 9: Preferred Language (n=20)

! of !20 30

educational/reference materials, it is likely for parents to forget the information given to them,

leading to greater extent of anxiety in subsequent visits. Since medical information handouts

already exist for parents to take home, a resource-based checklist would most benefit the parents.

SickKids serves patients up to the age of

18, and the data collected span from 1995 to

2013. Therefore the frequency of “year of

diagnoses” can be seen as demographic

information. The age group then is separated

into quartiles: 0-5 year-olds (11%); 5-10

year-olds (22%); 10-15 year-olds (39%), and

15-18 year-olds (28%). Depending on the age

group, there should be resources that reflects

the patient demographic (data here might not reflect the actual demographic due to small sample

size).

! Table 5 and all other further tables are arranged in descending order interns of how many

people were unaware of the resources offered at SickKids. This process identifies knowledge

gaps that could be filled with proposed Patient Orientation Checklist. The top five information

needs are: Map of the clinic and hospital, Who the social worker is, IV room, Location of satellite

hospital, and Availability of Child Life Specialist. (ranking has been adjusted due to N/A

answers).

!

11%#

22%#

39%#

28%#

0%#

5%#

10%#

15%#

20%#

25%#

30%#

35%#

40%#

45%#

1995+2000# 2000+2005# 2005+2010# 2010+2013#

Year%of%diagnoses%

Figure 10: Patients’ Year of Diagnoses (n=20)

! of !21 30

Table 5: Information at time of diagnosis

Table 6 shows that there are greater unawareness in all the four services listed compared

to items in Table 5.

Table 6: Information familiarity around the time of diagnosis

!

Around  the  +me  of  diagnosis  did  someone  explain  the  following  to  you?  n=20No Yes Not  Sure N/A

Map  of  the  clinic  and  hospital   45% 35% 15% 5%

Sickle  Cell  Pain  Pager   33% 22% 11% 33%

Who  the  social  worker  is   30% 40% 25% 5%

IV  room   25% 55% 10% 10%

Loca@on  of  satellite  hospital   25% 45% 15% 15%

Cujo's  room   21% 47% 5% 26%

Day  hospital  registra@on   20% 75% 5% 0%

The  avaliablity  of  Child  Life  Specialist   16% 42% 32% 11%

Loca@on  or  color  of  pod   15% 75% 5% 5%

In-­‐pa@ent  procedures/registra@on   15% 75% 5% 5%

Clinic  registra@on  process   6% 94% 0% 0%

Finger  Poke  room   5% 95% 0% 0%

Clinic  contact  phone  number  and  aSer-­‐hours  phone  number  for  on-­‐call  doctor    

5% 90% 5% 0%

Who  the  contact  nurse  is 0% 100% 0% 0%

Around  the  +me  of  diagnosis,  did  someone  tell  you  about  the  following  services?  n=20

No Yes Not  Sure N/A

Free  SickKids  Wi  Fi 65% 25% 10% 0%

Parent  mul@-­‐use  and  long  stay  parking  passes 50% 50% 0% 0%

Late  night  restaurants  at  the  hospital 50% 25% 20% 5%

Meal  Train  purchase  for  parents 45% 35% 10% 10%

! of !22 30

Overall satisfaction is high.

45% reported “very good”, and

40% reported “excellent” on the

amount of information about

people, places and/or services

received at diagnosis. However,

this is at odd with the finding that

only four items can be recalled

beyond 90% (i.e. respondents answered “yes” when asked if they’ve been told about certain

items). One explanation for this inconsistency is that parents simply cannot recall all the items

being told to them at diagnosis, but they do remember being told much information, therefore

resulting in a feeling of overall satisfaction. Alternatively, parents may feel that information they

remember or being told are sufficient in dealing with everyday situation. A more plausible

explanation is that parents were overwhelmed by medical information at diagnosis, and they

didn't feel the need for auxiliary information. This hypothesis is supported by the observation

that, all the top four items recalled by parents are related to the medical aspects of patient care

(e.g. who the contact nurse is, Finger Poke Room etc.).

! Table 7 illustrates that respondents do not know where to get financial aid (i.e. top four

items). No individual are aware of EI Caregiver Benefit nor nearby hotels with special rates.

Only 10% of the respondents knew about employment benefits and Northern Health Travel

Grant. This finding corresponds to the literature where parents are most concerned with

40%$

45%$

15%$

0%$ 5%$ 10%$ 15%$ 20%$ 25%$ 30%$ 35%$ 40%$ 45%$ 50%$

Excellent$

Very$Good$

Good$

Overall'sa)sfac)on'with'the'amount'of'informa)on'about'people,places'and/or'

services'received'at'diagnosis'

Figure 11: Overall satisfaction level (n=20)

! of !23 30

diagnosis and prognosis at the beginning of the illness, and forgetting to seek financial support. It

could be argued that family do not need financial support because they are financially well-off,

however, this scenario is unlikely given the Ontario child poverty rate of 14.2%. In terms of the

timing of information, majority of respondents wish to receive details concerning supportive

services at diagnosis and within the 1st month. Top three items at diagnosis: access to

translators, nearby hotels with special rates, Northern Health Travel Grant. Top three items

within the 1st month: SickKids website, parent support programs at SickKids or parents’

community, EI Caregiver Benefit.

Table 7: Familiarity with supportive service & preferred timing of information

! In Table 8, most of the programs and organizations are unfamiliar to parents, with highest

recognition rate of 40% for Make-a-Wish Foundation (actual figures to be much higher due to

N/A responses). The timing of information given is spread out through the three timeframes,

indicating a lower priority compare to items in Table 7.

Did  someone  explain  the  following  suppor+ve  services  to  you?  When  is  the  best  +me  to  get  this  informa+on?  n=20

No YesNot  Sure N/A At  Diagnosis

1st  month  3  months

EI  Caregiver  Benefit 85% 0% 5% 10% 59% 29% 14%

Nearby  hotels  with  special  rates 84% 0% 0% 16% 77% 23% 0%

Employment  benefits 75% 10% 10% 5% 67% 27% 7%

Northern  Health  Travel  Grant 68% 11% 5% 16% 71% 21% 7%

SickKids  website 53% 42% 5% 0% 56% 44% 0%Parent  support  programs  at  SickKids  or  parents'  community 42% 42% 11% 5% 53% 40% 7%

Access  to  translators 40% 25% 10% 25% 83% 8% 8%

! of !24 30

Table 8: Familiarity with programs and organizations & preferred timing of information

! The level of satisfaction with the amount of information about supportive services is

lower than the previous satisfaction measurement. This is related to an increase of unknown

resources as shown in Table 7 and Table 8.

!

17%$

44%$

17%$

6%$

17%$

0%$ 5%$ 10%$ 15%$ 20%$ 25%$ 30%$ 35%$ 40%$ 45%$ 50%$

Excellent$

Very$Good$

Good$

Fair$

Poor$

Overall'sa)sfac)on'with'the'amount'of'informa)on'about'suppor)ve'services,'

programs'and'organiza)ons'

10%$

35%$

30%$

20%$

5%$0%$

5%$

10%$

15%$

20%$

25%$

30%$

35%$

40%$

Weekly$ Monthly$ Every$3$Months$

Every$6$Months$

Every$Year$

Freqency(of(visit(to(SickKids(

Figure 12: Preferred method to receive information (n=20) Figure 13: Overall satisfaction (n=20)

Did  someone  explain  the  following  programs  and  organiza+ons  to  you?  When  is  the  best  +me  to  get  this  informa+on?  n=20

No Yes N/A At  Diagnosis1st  

month  3  months

Canadian  Hemophilia  Society   85% 0% 15% 40% 30% 30%

Million  Dollar  Smiles 80% 10% 10% 42% 33% 25%

Thalassemia  Founda@on  of  Canada 75% 10% 15% 36% 27% 36%

Aplas@c  Anemia,  Myelodysplasia  and  PNH  Associa@on  of  Canada 74% 5% 21% 40% 30% 30%

Starlight  Founda@on 65% 20% 15% 38% 31% 31%

Sickle  Cell  Associa@on  of  Canada 60% 25% 15% 40% 30% 30%

Make-­‐a-­‐Wish 55% 40% 5% 31% 38% 31%

Children's  Wish  Founda@on 55% 35% 10% 31% 38% 31%

Sickle  Cell  Awareness  Group  of  Ontario 55% 25% 20% 40% 40% 20%

Camp  Jumoke 50% 30% 20% 33% 42% 25%

! of !25 30

Conclusion

Parents are presented with a variety of informational needs that are unmet by current

healthcare system. Among these needs, financial and organizational supportive information are

mostly sought out. This finding corresponds to the literature regarding the categories of

information parents overlook when their children were first diagnosed. Parents are most

concerned with medical diagnosis and treatments information at the initial stage of the hospital

admission process. However, other practical considerations are often needed to ensure

extrapersonal stressors are speedily identified and taken into account for.

The length of exposure to the management of the child’s condition also play an important

role in the satisfaction level among parents. From our data analysis, frequency of visit to the

hospital and years of diagnosis are positively related to the amount of information parents

already possess and greater information satisfaction level. This correlation is most likely resulted

from the increased availability of information due to the amount time parents spent with the

healthcare professionals.

Last but not the least, the timing of information given affects parents receptiveness and

retention of information. Information overload often occurs when a child is first admitted to a

hospital setting, as parents are emotionally and physically under pressure. A well structured and

sequenced informational resource can significantly reduce parental anxiety and lead to an

effective adaptation of the parents into a caregiver role.

!!!

! of !26 30

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Appendix A— Synopsis of Verbatim Responses

Oncology Group !Q8. People, places and/or services you wish you knew about at diagnosis in SickKids oncology experience: !• Parental parking discounts and weekly passes • Should be services that allow parents to question hospital policies and procedures • Restaurants/food places around hospital, laundry • Resources(personnel/services) for use during new therapies (i.e. CBC draw, transaction). • Never offered assistance from a social worker • Child Life Specialist, restaurants outside of hospital • Marnies lunge assistance services through social worker , special benefits for parents !Q11. Any other supportive services that you wish you knew about during your SickKids oncology experience: !• NOFCC Child Life • Unclear who to talk to when have questions requiring staff or procedure (maybe introduce

duties in the hospital and procedures, and why they are done). • In terms of parenteral nutrition (GI feed, etc.), Ensure/Boost, trail (sampling) of different

products with kids to see which one works the best with individual kids since there are so many products on the market.

• Out-patient chemo nurses were scarce, wants a list of all the out-patient (visiting nurses). !Q13. Any other programs and/or organizations that you wish you knew about during your SickKids oncology experience: • Many services offered were not used by this couple • Nutritional !Q16. Add. feedback: • After first few days after diagnosis, parents should be taken on a guided tour of 8D & Sears

Day Clinic to get an idea of the layout and procedures. • Overwhelming information and understanding the treatments and side effects are most

important that should be distributed • One parent on EI and are distressed about his/her inability to afford message therapy for the

child. • Nutrition mentioned again here • Personal connections are where one parent got most of his/her information about support

services & resources. Only through serious treatment did the parents receive more information from social workers.

• Wants to know more more about prognosis.

! of !30 30

• Lot of information, but too scared and sad to remember. !!!Haematology Group !

Q8. People, Places and/or Service that parents wish they had known: !● ATM machines ● Parking passes ● Map/direction of clinic ● Cross matching for MBT ● Use of Hydroxyurea !!Q11. Supportive services that you wish you knew about during your visit to SickKids: !● Request refresher/reminder at 1 month and 3 month as there are too much to understand for their child’s diagnosis. ● ACOR list for parents with children with cancer (great support and resource for sharing/requesting info). ● Educational program while children are away from their school. ● The parking ● Process of treatment to be more effective interns of time, for frequent visitors to SickKids (waiting 2-3 hours for 45 mins procedure) ● Nearby hotels with special rate ● EI Caregiver Benefit ● Northern Health Travel Grant ● Employment Benefit ● Help in buying Medication ● Talk to other parents with similar circumstances to get a feeling of what lays ahead !!Q13. Programs and/or organizations that you wish you knew: !● Sickle Cell Association of Canada ● Medical information related to Thalassemia ● Add. info concerning Camp Ooch, Camp Trillium etc. at 3 months ● Internet access & Wi-Fi !Q16. Add. Comments: !● One binder with tabs for all the services etc. would be helpful as a reference at latter date. ● Important to put parents in contact with other parents whom have gone through the same route, this makes the experience more friendly.