qualitative data collection involves methods such as observation , interviews ( one - on - one or 
 focus groups ) , documents , and audiovisual materials ( creswell & plano clark , 2011 ) . historically , the 
 primary purpose of using such methods has been to explore what is salient 
 about a specific phenomenon of interest ( polit & beck , 2012 ) or to discover the phenomena that influence or are 
 relevant to a social or clinical situation . researchers may select qualitative methods to 
 understand how individuals or groups may experience an influencing phenomenon to which they 
 interpret and ascribe meaning ( pope , van 
 royen , & baker , 2002 ) or to gain an understanding of participants perspectives 
 about the benefits and limitations of receiving an intervention ( monaghan , sanders , kelly , cogen , & streisand , 
 2011 ) . based on the analysis of qualitative data , researchers can be better 
 informed to make ongoing decisions about appropriate study design features that will lay the 
 foundation to guide the planning of the next study , particularly for intervention research 
 development ( monaghan et al . data collected through qualitative methods have become an increasingly valuable resource 
 for researchers when developing behavioral interventions for future clinical trial 
 evaluation ( murtagh et al . , 
 2007 ) . qualitative research findings can provide preliminary data in support of the 
 efficacy of a new intervention , contribute to further refinement of a new or existing 
 intervention , and suggest potential outcomes that result from delivering a new intervention . additionally , a critical measure of behavioral intervention research supported by extramural 
 funding agencies ( eg , national institutes of health ) is whether the target population viewed 
 the intervention as relevant , acceptable , and beneficial ( meissner , 2011 ) . researchers have demonstrated the ability of ill children to participate in studies that 
 employ qualitative methods . for example , children affected by life - threatening illnesses , 
 phenylketonuria , sickle cell disease , and diabetes have answered open - ended interview 
 questions ( cotton , grossoehme , & 
 mcgrady , 2012 ; di ciommo , 
 forcella , & cotugno , 2012 ; hawthorne et al . , 2011 ; kiernan , guerin , & maclachlan , 2005 ) , resulting in theory , instrument , and 
 intervention development and confirmation . these examples provide strong support for using 
 qualitative methods to understand perceptions from ill child participants for the purpose of 
 intervention development . thus , our research team chose to use qualitative data collection 
 methods to guide and shape development of a pediatric oncology palliative care 
 intervention . the purpose of our qualitative study was to use child and parent self - reports to gather 
 ideas for developing a legacy - making intervention for children with cancer . legacy - making , 
 or memory making , can be defined as doing or saying something to be remembered ( foster et al . , 2009 ) . although 
 children s hospitals often offer legacy - making activities to pediatric oncology patients or 
 their family members ( foster , dietrich , 
 friedman , gordon , & gilmer , 2012 ) , such activities are rarely empirically 
 based . legacy - making interventions have been tested in adult populations ( chochinov et al . , 2005 ) , but gaps 
 remain in testing legacy - making activities in children . legacy - making has been explored from 
 perceptions of staff and bereaved family members ( foster et al . , 2009 ; foster et al . , 2012 ) , but few studies have explored 
 legacy - making from perceptions of children with life - threatening illnesses such as cancer . 
 we were unable to locate published pediatric legacy - making activities or age - appropriate 
 interventions developed for children with cancer based on child self - reports . therefore , we 
 obtained institutional review board approval to gather child and parent self - reports that 
 would inform development of a legacy - making intervention . previous knowledge on legacy - making from bereaved parent and sibling reports ( foster et al . , 2009 ) , staff reports 
 ( foster et al . , 2012 ) , and adult 
 legacy - making interventions ( chochinov et 
 al . , 2005 ) however , prospective self - reports from parents and children with cancer were 
 needed to determine ( a ) if children with cancer seemed interested in 
 legacy - making activities , and ( b ) if so , what types of activities might 
 they be interested in . we chose a qualitative method in which children ( ages 7 - 12 years ) 
 responded to 2 open - ended interview questions after parent consent and child assent . research assistants gathered the self - reports via individual audio - recorded child interviews 
 in a private room near the outpatient clinic . two 
 researchers independently analyzed data from the open - ended questions through qualitative 
 content analysis ( hickey & kipping , 
 1996 ; lobiondo - wood & 
 haber , 2006 ) . the researchers repeatedly read the transcripts to gain a holistic 
 sense of the data . the 
 researchers reviewed the initial coding scheme , extracted quotes , and regularly discussed 
 the rationale for emerging categories . data were reexamined by recoding original transcripts 
 and making mutually agreed upon category changes . we used the findings to develop a 
 pediatric legacy - making intervention , which was further shaped after feedback from one of 
 the parent  child dyads . by using the same inclusion criteria planned for a future study to pilot the newly 
 developed intervention , the researcher is in a position to examine feasibility of the 
 proposed recruitment methods and inclusion criteria . the results of our qualitative study 
 showed a potential recruitment challenge regarding identification of eligible children at 
 our institution . eligible children ( a ) were between 7 and 12 years of age , 
 ( b ) had any cancer with a poor prognosis ( defined as less than a 60% 
 chance of disease - free survival at 5 years postdiagnosis ; this determination was made by 
 attending physicians at the time of diagnosis or at any point during treatment when clinical 
 changes have been noted ) , ( c ) were able to speak and understand english and 
 had a parent caregiver able to speak and understand english , and ( d ) had an 
 absence of cognitive impairment and a parent caregiver with an absence of cognitive 
 impairment . physicians and nurse practitioners notified the principal investigator of 
 patients who met inclusion criteria . although the participation rate was high , we 
 experienced difficulty in identifying participants with a poor prognosis because the 
 protocol relied on provider referral for patient names . it took 12 months to enroll 8 
 eligible participants when we had expected to enroll 2 per month . as a result of this 
 experience , we revised our inclusion criteria for the future pilot study to include children 
 with any prognosis . expanding our inclusion criteria would allow us to proactively review 
 lists created by the cancer center registry of new diagnoses and relapses for a more 
 feasible identification of potential participants . more important , our expected sample for 
 the future pilot study will include participants with varied prognoses and allow us to 
 prospectively explore if prognosis mediates intervention efficacy . expanding our inclusion 
 criteria will well - position us to formulate data - based inclusion criteria , especially 
 regarding prognosis and point of illness trajectory , best suited for intervention testing in 
 a future multisite trial . qualitative work also allows researchers to assess staff acceptability of studies and 
 willingness to support patient participation . physicians , nurses , and nurse practitioners 
 are key gatekeepers for investigators approaching potential study participants in 
 coordination with patient clinic visits . in our study , the principal investigator ( tfa ) 
 presented the project to all providers within the pediatric cancer division before beginning 
 recruitment . some providers expressed concerns regarding use of sensitive terms ( eg , legacy , 
 remember ) in the study materials that could imply death was imminent . in response , we added 
 to our protocol the opportunity for parents to see the open - ended child interview questions 
 before using them with their children . the questions were as follows : some children tell me that they would like to write a few words or make something 
 special to give to someone they care about . ( 1a ) would you like to write words or make 
 something to give to someone ? some children who are ill have told me that they hope their families and friends 
 remember certain things about them . what would you like your family or friends to 
 remember most about you ? this experience 
 confirmed the possibility of parents perceiving that certain terms used in study scripts , 
 consent forms , or instruments could imply a death - related study purpose , which was not the 
 intent of our study . this allowed for alterative wording in case any other parent caregivers were concerned 
 with us using the term  remember  with their child . we also planned to remove the word 
  legacy  from study scripts and consent forms for future studies to ensure that imminent 
 death would not be implied . our qualitative data provided the foundation for an empirically based framework for a 
 pediatric legacy - making intervention , informing intervention content and format ( table 1 ) . for example , we learned 
 that children living with advanced cancer with a poor prognosis did not explicitly express 
 end - of - life legacy concerns as we had anticipated . rather , children expressed that they 
 wanted others to know or remember ( a ) their personal characteristics , 
 ( b ) things they like to do , and ( c ) their connectedness 
 with others . these categories that emerged from child self - reports were used to create 
 content for the planned intervention that would guide children to develop or further build 
 their desired legacies . guiding questions were developed ( by 2 pediatric palliative care and 
 oncology experts and 1 child development expert ) for each of these categories to help 
 children speak about legacy - related topics . first , the participating children reported that 
 they wanted others to know or remember their personal characteristics , 
 including their name , gender , appearance , and personal traits . [ i want 
 others to know ] if i m a girl or boy and what my name is . . we used 
 these data to develop age - appropriate guiding questions to invite children to express their 
 unique traits and characteristics ( eg , name , age , school , favorite color , food , music ) . our 
 qualitative data further revealed that child participants wanted others to know or remember 
 the things that they like to do , including their hobbies and interests . for 
 example , one child shared , this informed the 
 development of guiding intervention questions related to children s favorite activities or 
 things that make children most happy . children also reflected on their personal desires to 
 express their connectedness with others , such as telling family members how 
 much they are loved . in turn , we created guiding questions for the intervention to elicit 
 children s expressions about their connections with others ( eg , family , friends , teacher , 
 pets ) and provide children the opportunity to give messages to special people . we also used the children s self - reports regarding individualization to develop the format 
 and structure of our intervention ( table 1 ) . all the child participants ( n = 8 ; 100% ) supported the idea of writing 
 some words or making something to give to somebody . the children suggested specific 
 activities involving crafts , computers , music , and games and suggested that they would 
 prefer to have the choice of working alone or seeking help of others . based on participants 
 suggestions , we selected a digital storytelling format in which the legacy - making 
 intervention would be embedded via scheduled video - recorded child interviews . video 
 recordings could incorporate the child s favorite activities , crafts , or locations ( eg , 
 their room ) ; family members ; or pets . a videographer would edit the video recordings and 
 incorporate photographs and music selected by the child to create a digital story for the 
 child and his or her family . digital storytelling would produce a final product that could be viewed and 
 distributed via the computer and could include music and photographs , video , and audio of 
 children s preferred crafts or games . the digital storytelling format would allow 
 participation to be tailored to the unique aspects of each child and family so that children 
 could choose to work alone or request assistance from others and still maintain consistent 
 intervention fidelity . after 
 developing the legacy - making intervention , the principal investigator contacted all parent 
 caregivers of children ( n = 8) who previously participated in the child self - report 
 interviews to invite the children and their primary parent caregivers to participate in a 
 follow - up focus group . the focus group was rescheduled once in an effort to increase 
 participation , but only 1 child and 1 parent participated in the follow - up . attrition ( 88% ) 
 was due to 2 participant deaths , 1 no - show after verbal agreement from parent via phone , 2 
 passive refusals , 1 active refusal because the child was not feeling well , and 1 active 
 refusal because of a schedule conflict . this information informed us that group follow - up 
 for this population presented challenges and was not feasible . in response , we designed the 
 subsequent pilot study without group data collection methods but rather individual 
 appointments that could be flexible and scheduled according to the unique needs of each 
 child and family . one of the greater contributions of qualitative findings as a source of evidence is face 
 validity , including potential participants acceptability of intervention elements . in our 
 study , the qualitative follow - up feedback obtained from the one child and parent informed 
 parent and child acceptability of our newly developed intervention . feedback from the one 
 child and one parent was acceptable here as our goal was to prepare and develop the 
 intervention for future standardization and pilot testing in the next study . the child and 
 parent dyad were interviewed separately to  try out  the planned content and format for the 
 newly developed intervention . to assess their acceptability of the digital storytelling 
 format , the child and parent first watched 2 examples of a digital story via youtube : 
 ( a ) a video describing the process of digital storytelling ( http://www.youtube.com/watch?v=ruzxbc6yrhu ) and ( b ) a generic 
 example of a digital story about a child s trip to disney world ( http://www.youtube.com/watch?v=erc2xqczppg ) . interviewers then asked 
 participants to play a  card - sorting game  to gather their feedback on the guiding questions 
 that would be provided to other kids in the future to create a digital story about 
 themselves . participants were 
 instructed to read each question and sort the cards based on how much they liked or disliked 
 each question ( 0do not like [  ] , 1not sure , 2like [  ] ) . at the conclusion of the 
 card - sorting game , questions placed in the  not sure  bin were discussed with each 
 participant to get their feedback on what they liked or disliked about the question . this 
 card - sorting method was based on lynn s 
 ( 2011 ) work in instrument development . open - ended questions explored parent and 
 child acceptability of the planned intervention . although face validity was not claimed due to small sample size , the parent and child s 
 self - reports regarding the planned intervention provided evidence of their acceptability of 
 the intervention , which contributes to face validity . based on this qualitative work , we 
 further shaped the planned intervention . for example , both the parent and child reported 
 that they did not like the guiding question related to doing chores because that was 
 something children typically do not like to do ; therefore , this guiding question was 
 deleted . a few guiding questions were reworded based on the child not understanding the 
 intended meaning . for example , the child did not understand the question ,  who do you look 
 up to and why ?  therefore , we revised the question to  who is your hero ?  this wording was 
 better understood and well received by the child . qualitative reports also highlighted the 
 need for the intervention to allow for individualization according to each child s 
 preferences . many guiding questions rated as  do not like  or  not sure  did not apply to 
 the child . for example , the child reported not wanting to talk about her favorite food 
 because she could not eat due to a feeding tube ; however , she advised it was a good question 
 to include for other children . in response to this information gathered in our qualitative 
 study , we shaped our intervention to include a worksheet guide for children who would 
 participate in the future planned pilot study . the worksheet included the list of possible 
 guiding questions that children could select as topics to include in their digital story . we also added the option for children 
 to add topics ( eg , their cancer journey ) to include in their digital story . qualitative data also informed us of child and parent preferences for how much parents 
 would be involved in the intervention . participants intervention acceptability self - reports 
 shaped the intervention to allow for child participants to either work alone or seek the 
 help of other family members ( eg , parent ) in selecting topics , music , or photos for the 
 digital story . the child participant suggested that both parents and children review and 
 provide feedback on drafts of the created digital stories . therefore , we revised our plan 
 from only showing the digital story drafts to the children to showing the drafts to both the 
 children and their parents . we then added content in our planned parent consent and child 
 assent forms for the future pilot study to inform participants that both children and their 
 parent caregivers would view the digital stories . as a result of our qualitative approach , we have developed a legacy - making intervention for 
 the pediatric oncology population . using age - appropriate and sensitive well - thought - through 
 questions , researchers gained a better understanding for what was meaningful to this rare 
 population regarding their legacy - making hopes and desires . qualitative data resulted in 
 progress toward developing of a conceptual framework for pediatric legacy - making activities , 
 development of an age - appropriate legacy - making intervention , and future pediatric oncology 
 research design components ( table 
 2 and figure 1 ) . we have 
 demonstrated how preliminary qualitative data can be used to develop an evidence - based 
 legacy - making intervention that is now ready for pilot testing . theoretically and 
 empirically grounded pediatric palliative care interventions could contribute to the 
 subsequent well - being of children with cancer and their family members . developing 
 interventions based on prospective child self - reports can provide empirical evidence for 
 hospital services offered to pediatric cancer patients . the results of our carefully planned 
 qualitative study laid a solid foundation for a newly developed legacy - making intervention 
 in pediatric oncology ready for pilot feasibility and efficacy testing .
qualitative methods can be particularly useful approaches to use with individuals who are 
 experiencing a rare disease and thus who comprise a small sample ( such as children with 
 cancer ) and are at points in care that few experience ( such as end of life ) . 
 this 
 data - based methods article describes how findings from a qualitative study were used to 
 guide and shape a pediatric oncology palliative care intervention . 
 qualitative data can 
 lay a strong foundation for subsequent pilot intervention work by facilitating the 
 development of an underlying study conceptualization , providing recruitment feasibility 
 estimates , helping establish clinically meaningful inclusion criteria , establishing staff 
 acceptability of a research intervention , and providing support for face validity of newly 
 developed interventions . 
 these benefits of preliminary qualitative research are described 
 in the context of this study on legacy - making , which involves reports of children ( 7 - 12 
 years of age ) living with advanced cancer and of their parent caregivers .