Elana E Evan*, Elise Calonico BS, Jolene Tan BS and Lonnie K Zeltzer
Department of Pediatrics, David Geffen School of Medicine at UCLA, UCLA Children’s Comfort Care Program, USA
Received date: June 22, 2012; Accepted date: August 21, 2012; Published date: August 23, 2012
Citation: Evan EE, Calonico BSE, Tan BSJ, Zeltzer LK (2012) A Qualitative Approach to Understanding Quality of Life in Pediatric Palliative Care. J Palliative Care Med S1:005. doi: 10.4172/2165-7386.S1-005
Copyright: © 2012 Evan EE, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Visit for more related articles at Journal of Palliative Care & Medicine
Helping pediatric patients achieve an optimal quality of life despite their serious illness is a hallmark for providing excellent pediatric palliative care. There is controversy regarding how to define pediatric Quality of Life (QoL) and how to assess this construct in children. Currently, there is no pediatric QoL instrumentation that has been standardized on population children with advanced disease. This qualitative study sought to determine what is quality of life from the perspective of pediatric patients with advanced disease? Twenty-nine pediatric patients (child mean age 14.7 years, range 9-21 years) participated in the current study. Through analysis, we identified three domains of QoL (physical, psychological, social) and a lifestyle values category. These results are important first steps for providing direction to future studies aimed at modifying QoL instruments in order to better understand the pediatric patient’s illness experience and improve QoL when they are facing advanced disease.
Quality of Life (QoL); Qualitative; Pediatric palliative care
The World Health Organization (WHO) defines palliative care as an “approach that improves the quality of life of patients and their families facing life-threatening illness”. This includes the “prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual” . When healthcare providers, together with families, decide which goals of care (whether curative or palliative) are of utmost importance in relation to the patient’s disease course and individual and family values, the patient’s perception of what is quality of life is at the forefront of this decision-making process. Thus, it is important for healthcare providers to have a clear sense of what is quality of life for their individual patients.
In pediatric patient populations, where children range in their cognitive and verbal skills and parents are often proxy-reporters and decision-makers for their children, it becomes even more challenging to assess the child’s perception of what he/she considers to be quality of life. Pediatric Quality of Life (QoL) has been defined by others as a multidimensional construct that is a state of complete physical, mental, and social well-being for a child [2,3]; however, these definitions of QoL that are referring to the physical, psychological, and social domains of health, are seen as distinct areas that are influenced by a person’s beliefs, expectations, and perceptions of health . Therefore, as much as possible, it is crucial to obtain the self-report of children in order to gain the most accurate assessment of their quality of life. The controversy when defining “quality of life” lies in the fact that each of these domains can be measured objectively or subjectively. The objective measure is important in defining a patient’s degree of health, while the subjective translates the objective assessment into the QoL experienced . This explains how two people with the same health status may have very different perceptions of QoL.
Additional controversy rests among clinicians and researchers, alike, regarding not only how QoL is defined, but how to measure it. Criticisms rose about the assessment of pediatric QoL focus on the idea that parents and children share different views about the cause, etiology, treatment of the illness, interpretation of questions as well as adopt different time perspectives. These factors may alter the parent and child’s ability to complete questionnaires and understand the language being used when being administered these types of questionnaires. Thus, time, context, and values can vary when QoL is being assessed across the same parent-child dyads which could, in turn, result in different QoL scores on any given occasion ; therefore, it is important to continue to pursue obtaining QoL information from the pediatric patient directly in order to ensure their voices are heard accurately.
All previous pediatric QoL instrumentation have been standardized on patients with chronic illness (which may include patients with nonterminal illnesses) and/or life threatening illness [5-8], such as cancer, which may be curable if treated successfully. The term advanced disease, used here, refers to patients who have been diagnosed with a life threatening illness which has progressed and is not curable. To date, there is no measure of Pediatric Quality of Life that has been standardized on a cohort of pediatric patients facing advanced illness. The objective of the current study is a first step in understanding what is quality of life for pediatric patients with advanced disease from their own perspectives; a qualitative approach was used to uncover some of these principles which are described here.
The current study was derived from a larger mixed-methods study using both qualitative and quantitative research methodology to assess symptom communication in pediatric palliative care . The current report is a secondary analysis of this larger dataset. Children’s perceptions of their quality of life were categorized and coded from interview narratives of their own experience dealing with their illness. From our study interviews, pediatric patients with advanced disease acknowledged three main domains of quality of life as being meaningful to their illness experience. These main domains were categorized as physical, psychological, and social domains of quality of life. For the three domains of Quality of Life identified here, we used the definitions provided by Spieth and Harris  to operationalize each category of quality of life. An emerging, additional fourth domain was also identified in the pediatric interviews that we termed “lifestyle values”. This new domain, identified by our study, encompassed statements made by pediatric patients that were their “rules to live by” or values which helped them achieve an improved quality of life.
Pediatric health care professionals (two psychologists and one doctoral level nurse) interviewed parents and their children, ages 9-21 years, with advanced diseases (operationalized in this study as having a less than 20% chance of survival beyond 3 years). Exclusion criteria included children and parents who were unable to speak English fluently enough to participate and parents who were not mentally competent. For this qualitative study, children were recruited from all subspecialty divisions at one children’s hospital, the hematology/oncology division of another children’s hospital, and at an in-home children’s hospice. Institutional Review Board approval for the study protocol was granted from each of the three institutions where participants were recruited. Potential participants were identified from referrals by health care providers affiliated with these institutions. The current report examines the interviews of 29 pediatric patients (child mean age 14.7 years, range 9-21 years). Data saturation was used to determine sample size.
The semi-structured interviews provided an opportunity for participants to tell their personal narratives while also ensuring that they responded to particular questions regarding symptom communication (see Table 2 for interview prompts). The interviewers asked children to share what it has been like for them to be sick. This broad prompt allowed children to tell their stories in their own words without interruption and allowed for them to freely describe what was important in their life while facing a serious illness. Children were interviewed without their parent(s) present.
|What has it been like to be sick?|
|What has bothered you the most while you have been sick?|
|Whom did you talk with about how you were feeling?|
|Do you think that (caregiver/provider/other) understood what it was like for you?|
|Did (caregiver/provider/other) do something or give you something that helped?|
|What do you think would have made it easier or harder to talk about how you feel with (caregiver/provider/other)?|
Table 2: Child Interview Prompts.
All interviews were audio taped and videotaped. They were then transcribed verbatim, with at least one individual performing a reliability check on each transcript and correcting any errors of transcription. The grounded theory approach used to perform the qualitative analyses used here is described in Hsiao et al. .
A preliminary codebook with operational definitions for each code related to quality of life was generated to promote consistency between coders and help eliminate individual coder bias. Blocks of texts ranged in size from a single sentence to several lines. Using this preliminary codebook, a random subsample of interviews was separately coded by two research assistants trained in qualitative content analysis. Where differences occurred, the two coders met with the project coordinator and appropriate adjustments were made to the set of codes, such as adding a new code or refining a code definition. Inter rater reliability was determined by comparing the coded interviews for consistency in the manner in which codes were applied to the same narrative. Reliability between both coders was 0.91, which is considered to be high. The focus of the current study is on all codes concerning “quality of life”.
Of the 29 children who participated, seventeen (59%) participating patients were female and 12 male (41%), 59% were Caucasian, 31% Hispanic, 3% Asian. Response rate for invited subjects for this qualitative study was 57%. Reasons for not participating consisted of “being too busy to participate” (7 families), “not a good time” (4 families), did not return phone calls (3 families), and child passed away before the meeting time was rescheduled (1 family). All enrolled subjects completed the study. One family’s demographic information was missing. The demographic characteristics of the patients are shown in Table 1.
|Variable||Number (%)||Mean (SD)||Range|
|Age (years)||14.7 (3.90)||9-21|
Congenital Heart Disease
Table 1: Demographic characteristics of pediatric participants.
The average child interview was 17.8 pages. The five children who were under 12 years of age had relatively shorter interview transcripts (average 10.2 pages, range 5-18 pages). In addition, the two younger children with the shortest transcripts (5 and 6 pages each) had cognitive deficits, which made communication difficult. Length of the child transcript did not vary by child’s diagnosis or gender. Given that the interview elicited narratives, differences in lengths of interview may reflect differences in individual communication styles.
Table 3 shows the main domains of Quality of Life identified by children with advanced diseases and the frequency in which these themes were mentioned.
|1. Physical: ability to perform age-appropriate daily Children n (%), N=29
activities including self- care, physical activity, and role and leisure activities
|What has bothered child the most about being sick:|
|unable to play sports, one of favorite activities||7(24.1)|
|wants to do what other children do||4(13.8)|
|unable to go out anymore to be with friends or other people||3(10.3)|
|limited from daily activities due to decreased range of motion||1(3.4)|
|being weak compared to others; can’t fully immerse self in activities||2(6.8)|
|due to limited energy feels imprisoned with limitations||1(3.4)|
|can only handle physical limitations for so long before feeling mentally like needs to do something||1(3.4)|
|would rather have fun dying than no fun at all||1(3.4)|
|prevented from doing over half the activities that wants to do||1(3.4)|
|unable to return to normal life as it was before||2(6.9)|
|loss of ability to walk, being stuck in a wheel chair stressful||1(3.4)|
|disappointed that must always be consciously aware of daily decisions, not as free as other children of the same age||1(3.4)|
|being unable to do anything alone makes frustrated and feels like an infant||1(3.4)|
|limits place in isolation, feels lonely||2(6.9)|
|2. Psychological: emotional and cognitive states, positive and negative effects on behavior|
|feels constantly scared||1(3.4)|
|experience of being sick is depressing and not fun||2(6.9)|
|feels sad and uncomfortable being sick||1(3.4)|
|feeling sad, uncomfortable, or scared makes child wish to go home to feel better||2(6.9)|
|caused child to think about suicide has bad attitude, focuses on the negative||1(3.4)|
|special help makes child feel not good enough to do anything by self||1(3.4)|
|being depressed and gloomy makes other children not want to be around child||2(6.9)|
|experience of being sick causes anxiety||2(6.9)|
|has gained gratitude and appreciation for life||1(3.4)|
|has lost confidence to think positively||1 (3.4|
|paranoid and frustrated -||1 (3.4)|
|fears losing people who will be there to take care of child||1 (3.4)|
|difficult to stay positive||1(3.4)|
|feels self-conscious due to effects of illness||1(3.4)|
|scared and worried for family’s emotional suffering and pain||1(3.4)|
|negative outlook due to loss of plans for the future because of illness||1(3.4)|
|had to stop school because needed to keep life fun and stress-free, which going to school would not allow||1(3.4)|
|being sick is like a nightmare||2 (6.9)|
|3. Social: ability to maintain social relations, often the number or quality of social contacts:|
|having a best friend who listens, comments, and understands child makes child more comfortable||3 (10.3)|
|one of hardest parts of being sick is not being with family; desires more contact from family and friends||4 (13.8)|
|being close with mom makes child comfortable and makes life easier||1(3.4)|
|important to have people to talk to that understand child||1(3.4)|
|child and mom have a dual relationship of strength||1(3.4)|
|physical limitations make child feel left out from other kids||1(3.4)|
|hard to get along with kids, so doesn’t have friends own age||1(3.4)|
|family helps keep humor in life||1(3.4)|
|being separated and in isolation from everyone one of worst parts of being sick, it’s depressing||1(3.4)|
|being sick has made family closer||2(6.9)|
|feels weird to be treated differently by people child used to know||1(3.4)|
|hard to grow apart from family while sick||1(3.4)|
|4. Lifestyle values: other areas of life or lifestyles that child values:|
|just wants to be normal and be treated normally||3(10.3)|
|living is important- key to not be overcautious, to not change life because of the sickness, to not be afraid of doing anything. Don’t stop living life.||1(3.4)|
|important to achieve plans for future even though illness put them on hold||2(6.9)|
|privacy is an important component to keep in life||1(3.4)|
Table 3: Domains of Quality of Life identified by children.
Physical Quality of Life was defined as the ability to perform age appropriate daily activities including self-care, mobility, physical activity, and role and leisure activities in relation to the child’s subjective perception of QoL. Children often cited physical limitations as the one aspect of being sick that bothered them the most. One of the most common problems children associated with these limitations was the inability to do activities that were important to the child, such as sports, walking, eating their favorite foods, taking care of themselves/ being self-sufficient, etc. The inability to be a “normal” child, or what the child perceived as normal, was a major cause of the problem. Often, children stated that the inability to participate in such activities and be “normal” served as a source of stress and frustration in the child’s life, hating the stress of relying on others, feeling belittled, and feeling persistent sadness about losing their valued activities. Physical limitations had an impact on social functioning-children often felt left out from other children when they are unable to function in the activities they see their friends participate in. An interesting idea expressed by a few of the children was the importance of not letting the pain and physical limitations dictate one’s life. These children would prevent their physical limitations from affecting their ability to reach their goals at all costs, even if this meant ignoring their doctor’s or parents’ orders, or their own pain, in favor of having fun. One child expressed the thought that he would rather die having fun than not have fun at all.
One teen boy remarked: “It’s not really the way they treat me it’s more like how I feel when I’m in the hospital. I feel you know kind of imprisoned in the hospital like I can’t do anything. Especially when you’re in the hospital and you got tubes, you got an IV on you and you’re hooked up to machines and you can’t really do anything but lay there. And the more time you’re in there the more you feel like a slug and you can’t do anything.”
Psychological Quality of Life was defined through emotional and cognitive states, positive and negative effect, and behavior in relation to the child’s perception of QoL. Children made several statements about their mental and emotional states in relation to their illness that affect their daily psychological functioning. Common negative psychological effects of being sick were experiencing depression, anxiety and being uncomfortable. These mental states had several important consequences for the child’s QoL. Children often stated that feeling sad or uncomfortable in the hospital made them miss being home and wanted to go home even more, which made them globally unhappier about their illness. One child stated that the physical limitations of being sick accompanied by being made fun of and feeling left out from his peer group made him depressed and caused him to think about suicide, though he said would never actually do it.
Anxiety limited children from immersing themselves completely in the activities that they wanted to do the most. Feeling self-conscious and losing confidence made children more wary of returning to normal activities such as going back to school. Some children expressed that they created a negative self-perception, making them feel that they were not good enough to accomplish normal things. Some children attributed a negative outlook on life, to persistent negative thoughts because it was hard to keep them from focusing on the bad parts of life. This negative thinking caused the child to be depressed, creating a vicious cycle in which other kids did not want to befriend the child, which led to more depression.
On the other hand, children did state some positive effects of being ill on their psychological functioning. For instance, children stated that their illness made them appreciate and be more thankful for things in life, giving new importance to things that, before, they had not considered. Children, thus, recognized the importance of having a positive outlook on life to help prevent them from focusing on the bad parts of the day, which in turn, helped them to enjoy life and what they had. An example of this effect is stated here by one 12 year old girl:
“A couple days after my big brain surgery that had taken the tumor out, I became aware of all the things that I had to be thankful for…. I had a fabulous brain surgery with some really amazing brain surgeons working…I was being treated at, you know, some of the best hospitals, probably in the world and that was really good. I had a doctor who was amazing, really bright, tuned-in and solid. I had amazing nurse care, and you know all these things I realized I could be grateful for. Having this kind of gratitude kept me from focusing on the bad parts of the day. It helps me see the plus side and helped me to see all the things that could have gone wrong.”
Social Quality of Life refers to the ability to maintain social relationships, often defined as the number or quality of social contacts in relation to their subjective perception of QoL. Many of the children expressed the importance of their relationships with others as a major part of their overall quality of life. The quality of these relationships was often defined by how understanding, good at listening, and easy to talk to another person was. Benefits they derived from their social relationships included: having someone to talk to, giving the child hope for the future, keeping a positive perspective on life, keeping humor in life, and making life easier and more comfortable. However, children often expressed the difficulties of being ill in relation to their social functioning. Children spoke of losing relationships when they were unable to participate in activities with peers and go to social events. For these children, it was hardest to lose their friends and grow apart from their siblings. Moreover, it was also difficult to get along with the other children at school. They stated that one of their biggest challenges in dealing with their illness was being treated differently by others, especially by their peers. Finally, the limited nature of their interaction with family and friends seemed hardest for these children. Many expressed, including the child quoted here, that they missed their family and desired more contact from them:
“The worst thing I would say is just being separated from everybody because everyone keeps continuing what they were doing, but you kind alike have to take a break and step aside for a while so it’s the worst thing.”
Through the process of coding the interview texts by the various domains (physical, psychological, social) of QoL, we found that there was an additional theme important enough to categorize and label as “lifestyle values”. There were few interview excerpts that fell under this category, but regardless, we felt they were significant enough to mention here and perhaps develop further in future studies. A lifestyle value was defined as other areas of life or lifestyles that the child valued. In this regard, children would state various “rules to live by” as well as values that contributed to improving their quality of life. An example of text coded under this category is the following:
“I try not to be overcautious, like, ‘Oh, can’t touch that, it has germs.’ I just handle things like before only more careful, but I try not to like, change my life over it…”
Without directly querying the pediatric patients, themselves, it is unlikely that we would have gathered the type of results we did. More informally, within each of the domains of quality life, we observed children’s responses contained words demonstrating distress levels of a time-sensitive or time-pressured nature, using words such as “constantly”, and “can only handle physical limitations for so long” to describe their physical, psychological, and social quality of life. Some examples of statements include:
“I am disappointed that I must always be consciously aware of daily decisions”
“I feel constantly scared”
“I can only handle physical limitations for so long before feeling mentally like I need to do something”
Our findings support the work of other qualitative studies which call for a multidimensional (physical, psychological, and social) framework for defining quality of life [2,3] and also suggests the importance of directly asking the pediatric patient what is meaningful in their life in order to get a sense of how they define quality of life [11,12].
The study that most closely resembles the objectives of our current study is Hinds et al.’s  qualitative examination of children’s responses to interview questions relating to pediatric QoL. Her results primarily revealed that by directly asking pediatric patients the meaning of being ill to them, researchers and healthcare providers could more accurately assess what quality of life is for children diagnosed with cancer and undergoing initial stages of their treatment. However, the concept of what is quality of life and what is valued by the child, him/ herself, during stages of advanced pediatric disease was not deciphered. A unique element of our study was our exploration of the pediatric patient’s perception of their quality of life during advanced disease.
Although our study did not ask specifically about what patients felt brought meaning to their life, pediatric patients, nevertheless, initiated discussion regarding this topic on their own. Thus, in addition to categorizing QoL into physical, psychological, and social domains, we also created a separate category termed lifestyle values. This proposed new domain of quality of life consisted of statements made children which were “rules to live by” or values that facilitated their quality of life. Future study is needed to validate this emerging concept since the current study consisted of a small sample size. The qualitative results we uncovered here would be important to incorporate into already existing quantitative instrumentation that have not been standardized on pediatric patients with advanced illness. For example, after administering a quantitative instrument assessing pediatric quality of life on domains of physical, psychological and social well-being, it may be important to then query the child using an open-ended question such as, “What does good physical well-being/quality of life mean to you?” This question can then be repeated for each other domain of quality of life (e.g. psychological, social). The interviewer can then ask a more general question regarding what are the child’s rules that she or he lives by and what values in life do they hold as a priority. Information derived from this type of quantitative-qualitative assessment can allow healthcare providers and family members to achieve a better, more individualized understanding of a particular patient’s quality of life needs, which can in turn inform decision-making for goals of care.
With regards to some informal observations we made regarding children’s responses containing words/phrases demonstrating distress levels of a time-sensitive or time-pressured nature (e.g. “constantly”, and “can only handle physical limitations for so long”): this sense of urgency relating to factors affecting their quality of life appeared to be different from the type of answers that would be gleaned from a typical pediatric QoL assessment instrument (e.g. “How much of a problem is it for you to run more than one block?” with Likert scale response choices of “never, almost never, sometimes, almost always, always”). It is possible that at an advanced stage of disease, certain physical, psychological, and social limitations create a more driving sense of urgency and distress than perhaps at an earlier stage of treatment. Therefore, level of distress experienced by patients regarding any physical, psychological and social limitations’ impact on their quality of life would be important to assess at an advanced stage of disease. For example, it is likely that a child just beginning cancer treatment after being diagnosed may feel that an extended hospital stay is less distressing and plays less of an impact on his/her quality of life than a child with advanced disease who has endured years of hospitalization and/or more severe episodes of illness. The level of distress or urgency on the part of the patient to ameliorate any particular domain (physical, psychological, social) of his/her quality of life may be moderated by their stage of disease. Thus, based on our observations, it may be important for healthcare providers to inquire, using open-ended questions, to, about distress level and meaning associated with physical, psychological, social domains of QoL) approaches for assessing overall quality of life.
An extension from this study may be a survey derived from these findings that could be used by healthcare providers during advanced stages of pediatric illness to measure quality of life. From this information, healthcare providers may learn from their pediatric patients how to balance goals of care involving life extension with those involving comfort measures.
Additional future studies can aim to compare QoL responses between children with newly diagnosed conditions and those with recurrent hospitalizations, as well as examine whether children experiencing chemotherapy have different ideas and language for how they describe their quality of life as opposed to those children receiving a heart transplant.
As this study is a work-in-progress as well as a first step to understanding quality of life from the perspective and language of children with advanced disease, some limitations to the current study include: small sample size, bias towards two specific disease categories, abroad age range, and a limited socio demographic representation. Next step studies could then prospectively take into account the limitations as well as the findings we have presented here and improve on future study methodologies. It is the hope that with better techniques to more accurately assess pediatric QoL, healthcare providers can better understand the pediatric patients’ overall experience when confronting advanced stages of their illness, and, in turn, improve pediatric palliative care for their patients.
This work was supported in part by the Elizabeth Glaser Pediatric Research Network. We thank our research associates and students for the work they all contributed to this project over the years. Most importantly, we thank the pediatric patients and their families who participated in this research by inviting us into their lives by sharing their heroic stories.
Make the best use of Scientific Research and information from our 700 + peer reviewed, Open Access Journals