Comparing the Perception of Support by Parents of Children With Cancer and by Health Professionals Holly Ann Williams, RNC, MN Childhood cancer is considered one of the greatest challenges a family can face. Some families cope well with it; others do not. The presence of social support, both perceived and actual, as well as the individuals with whom parents interact, may determine how well a family copes. The purpose of this pilot study was to describe how parents of children with cancer perceive support and the types of things parents found supportive while their child was hospitalized. Parents’ perceptions of support were compared with those of the health professionals involved in the care of these children. The primary way the parents perceived support was any activity that met their affective needs. Health professionals faltered when asked to define support, but most said that it meant "being available." Caring and educational activities were the two ways the professionals could offer support to the families, yet parents rarely mentioned teaching as a supportive activity. Parents and health professionals defined aspects of support similarly, but there was minimal congruity between them in listing which people were considered supportive to the parents. In conclusion, health professionals and parents have similar ideas about what support is, but at best, the professionals’ predictions concerning who is supportive in a given case appear random and may be biased. This study suggests that new ways of assessing support needs for these families are needed.
SUPPORT is a central tenet in onNurses assess the need for support and offer support to families on a daily basis. However, the definition of support is generally taken for granted. Everyone assumes that they know what is meant by &dquo;social support.&dquo; Yet research that asks health care professionals what they mean by support is curiously missing in the oncology literature. The literature is also without any studies that compare staff mem-
SOCIAL cology nursing.
From the Department of Anthropology,
Florida, Gainesville, FL
University of
Supported by a Pre-Doctoral Fellowship (National Research Service Award) from the National Cancer Institute, and funding from the Nurses Educational Funds. The views expressed in this report are those of the author and do not necessarily reflect the views of the funding agencies. Address reprint requests
to
Holly Ann Williams, RNC,
MN, 623 SW 21st Ave, Gainesville,
FL 32601.
or what is supportive for parents with parents’ perception of support. This article reports findings comparing health care professionals’ perceptions and definitions of support with the perceptions and definitions of support given by parents of children with cancer. I wanted to know if parents and health care providers defined and described support similarly. I also wanted to know if the staff taking care of children with cancer were accurate in assessing who the parents identified as their most supportive contacts. These findings are a component of a larger study’2 focused on understanding why some parents of children with cancer seem to have more support than others, particularly during those periods when the child is in the hospital.
bers’ perceptions of who
Review of Literature Social Support-What Do We
Really Mean? simultaneously one of the
Social support is commonly used and
most
180
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one
of the most
181
poorly defined constructs. The fourth outcome standard of practice for pediatric oncology nurs-
ing3
focuses
on
psychosocial
care.
Criteria for
outcome include assessment of stressors and
coping strategies of family members and of the adequacy of family support systems. Yet clinicians and researchers do not agree on a definition of support, and the operationalization of the construct varies widely~-10 There is agreement now that support is a multidimensional construct. When referring to support, each component of the construct should be clearly defined and operationalized.&dquo;,12 Typologies of support generally refer to the areas of instrumental aid (material assistance), affective support, and informational support. Barrera~3 conceptualized social support as consisting of the areas of perception of support, enacted support, and social embeddedness. Perception of support referred to the perception of being connected with others in a reliable manner, enacted support was described as actions of others toward the person in need, and social embeddedness implied social relations with significant others. 13 1 used Barrera’s definitions for this research, although I redefined social embeddedness to refer to the parents’ social support networks.
Social Network Social networks refer to linkages between individuals. These linkages, or ties, vary in structure and function?14-16 Resources such as social support flow across such ties. (For more extensive reviews on social support and social networks see Heller and Swindle, 7 Wortman,l’ and Norbeck.18)
Parents and the Need forSupport
Dealing with all aspects of childhood cancer is challenge for most families. Parents need support throughout the course of the illness and after treatment.19,20 Studying 45 families of children with leukemia over a 20-month period, Kalnins et a121 found that families required support for more than just treatment issues. Support was required for a wide range of problems, such as medical complications of the ill child, financial problems, and deaths of others. Morrow et alzz found that the amount of perceived support received was positively associated with psychosoa
adjustment in parents of children with can(See Williamsz3 for a more complete review on social support specific to parents of children with cancer.) Perception of care from the perspective of both the health professional and the parent of a cial
cer.
sick child is an area that needs to be addressed. An extensive literature review failed to find research in this area. This report attempts to address this deficit in the pediatric oncology literature.
Methods
Sample and Setting A nonrandom sample of parents or other primary caretakers of children with cancer was drawn from the inpatient admissions of two general pediatric units and a bone marrow transplant unit in a large university teaching hospital. I interviewed the families of 15 children. The sample consisted of 14 women and 3 men; 15 were parents (12 mothers and 3 fathers); I was a grandmother; and 1 was an aunt. Although not parents, the grandmother and the aunt were primary caretakers for the ill child. Most of the parents (n 13) interviewed were also primary caretakers. The hospital stays were managed primarily by the mothers, and fathers were rarely seen in the rooms. Therefore, the sample reflected a greater participation by women. Ten parents were married, 1 was separated, and 4 were divorced. The grandmother was married, and the aunt was single. I also interviewed 33 health care professionals involved in the care of these children. Twentytwo nurses, 2 physician assistants (PAs), 4 physicians, and 1 child life therapist agreed to be interviewed. The children’s ages ranged from 2 years to 19 years. There were 6 girls and 9 boys, and all had been diagnosed within the past 3.5 years. =
Procedure The
study consisted Participant observation
of several components. and in-depth interviews were used to collect data to describe parents’ experiences of parenting a child with cancer. Although focused primarily on what happened during hospitalizations, I also asked questions about support at home. Parents were observed in their children’s hospital rooms for periods of 5
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182
minutes at a time. Observations occurred during the day and evening shifts, and timing varied. Averaging 13 visits per family (15 families), I made 194 observations. To find out who was most supportive to the parents during the periods of their child’s illness and hospitalizations, I asked the parents to fill out a social network inventory (modified from McCallister and Fische~4). They listed the persons who were important to them during their child’s illness (a free listing of friends, family members, health professionals, etc) and indicated whether each person lived within 5 miles of them and how long they had known each person. For each person on the list, the parents rated the amount of support they felt they had received from the individual. Rating was on a scale from 0 (no support at all) to 100 (the highest level of support that they could imagine). The social network inventory was adapted from a procedure designed by McCallister and Fischer,24 used to study personal networks by mass survey. The instrument was altered to allow the parents to list as many individuals as they wished. This was done so that I could describe the types of networks that parents have during the experience of parenting a child with cancer. Reliability of my adapted social network inventory has not been established because there has been no prior use of this instrument. I compared the findings from the social network inventory with the data obtained from the interview to establish face validity. I conducted in-depth interviews with the health professionals to determine their definition of support, what things impeded giving these families support, and what they would want for support if they were parents of a child with cancer. In addition, each health professional was asked to list the individuals they considered most supportive to the parents during the time of the child’s illness and hospitalizations. The health professionals were asked to list supportive persons only for the families for whom they personally had provided care. Each of the health professionals interviewed cared for these families on more than one occasion.
Analysis of Data were tape-recorded and tranUsing content analysis on the extensive
All interviews
scribed.
field notes and interview data, I identified themes pertaining to support providers and the mechanisms of support. Conceptual definitions of sup-
port were obtained from both the parents and the health professionals. Qualitative data matrices,25 based on Barrera’s definitions of support, 13 were used to code support behaviors into the dimensions of enacted and perceived support. Frequency measures were tabulated on the content-analyzed data. Representative verbatim quotes in this article provide vivid details that illustrate the subjects’ interpretations of their ex-
periences. Results and Discussion
Parents’Definitions ofSupport Parents defined support consistently in affective terms. The parents offered examples of those who provided affective support: &dquo;People who care, who are easy to talk to, and who listen.&dquo; The ability to listen well and to show compassion were important aspects of affective support. Caring was a central theme expressed by the parents: &dquo;Someone just to be there, to hold me and let me cry.&dquo;
Professionals’ Definitions of Support The overwhelming majority of the staff faltered when asked to define what support was. One nurse commented: &dquo;Everyone knows what it is, but how do you say it? The extra, what goes above and beyond the normal care.&dquo; Another nurse said: &dquo;No one ever gave me a lesson on support, you just innately know what it is.&dquo; Professionals could describe actions but were unable to clearly articulate a definition of those actions. &dquo;Sometimes you stumble, but you know you are there to ease the situation.&dquo; Another nurse said, &dquo;I’m at a loss for words. In dealing with oncology patients it is more focused than with chronic or surgical patients, especially with pediatric patients. It just becomes a vital part of your care.&dquo; The general consensus was that support was &dquo;being available&dquo;-sitting down, joking with the parent, helping to carry others through difficult emotional times, and helping the parents to cope. The staff clearly described an affective component in their efforts to define support. The affective dimension to support was best ex-
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183
pressed by a staff nurse who have a caring heart.&dquo;
said: &dquo;In this
job,
The second component of the staff definition of support was knowledge. Being knowledgeable and letting the family know that they were being supported with nursing and medical care was defined as support. Comments on providing knowledge included, &dquo;Answer questions concerning their child, tell them everything that you know, teach them to reach an optimal level of coping.&dquo;
Parents’ Descriptiorrs of EnactedSupport Again, affective behaviors were the most consistently identified aspect of enacted support, both at home and when the child was hospitalized. Information, such
as education about the child’s disease, was provided only by the hospital staff. Parents discussed receiving this type of information only during periods of hospitalizations. (Teaching is an integral component of pediatric oncology nursing, both in the hospital and in clinic or office settings. I interviewed the parents while their children were in the hospital. Although the interview questions were broadly worded, I believe the primacy of the hospital experiences altered the perceptions of the parents.) Parents mentioned instrumental support in terms of assistance with household management. This assistance included picking up the mail, child care for siblings, and watching the house when the parents were away. Primarily family members offered this help, assisted by neighbors and friends.
Parent-to-parent networks developed quickly in the
hospital.
Parents shared
news
about the
status of their children and sought one another out for emotional support. Parents discussed these relationships in their interviews. These parent-to-parent contacts were seen during the
observations made in the hospital rooms and corridors. Health professionals never men-
daily
tioned these parent-to-parent relationships. It unclear whether the professionals were unaware of the existence of these ties or whether they did not see these relationships as valid indicators of support for the parents. Parents cried together, spent breaks together away from their children, and encouraged one another during difficult times. Parents explained
was ’
that other parents knew better than the home what the experience was like.
people at
Professionals’ Descriptions of Enacted Support When asked about the most important things health professional could do for a family, 29 professionals ranked &dquo;caring&dquo; as the primary activity. The components of caring included being available, being consistent with the family, and showing oneself as supportive. Caring was seen as &dquo;showing oneself as being someone who knew the families as individuals&dquo; and &dquo;someone who offered empathy.&dquo; One caregiver qualified her statement &dquo;I don’t like to take control, but they need someone available for issues to be discussed.&dquo; Understanding and supporting the parent role was also an aspect of caring. A social worker expressed the need for professionals to support the parent role: &dquo;Allow a parent to continue to be a parent. Many parents have told me that they feel their child has been taken away from them by the doctors, the nurses, the social workers, the drugs. We can’t assume the role of parent for these people.&dquo; Consistent with the definition of support, offering education was the next most important activity, cited by 18 staff members. A nurse clinician described, at length, the need for educaa
tion : Make sure they are educated and know what the disease does or can do emotionally and physically. Make them feel that they can ask questions. It’s a busy place for a parent who isn’t aggressive. Be careful how you say things ... two, three words can change a though~ Nurses need to tell them that flexibility [ie, fiexibility in providing care] isn’t bad-the system doesn’t allow for consistency [ referring to the parents’ concerns about the number of individuals from whom they received information].
interesting aspect of this was that parents identified teaching as a component of support. The cause of this disparity is unclear. The
rarely
assume teaching is an basic component of care and thereit as a given. Support may be viewed as
Perhaps parents simply
expected, fore
see
something
extra or
special.
assisting with needed rethe third aspect of enacted support. This included helping with finances, referrals, The staff identified
sources as
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184
assistance with other family members, and helping the parents at home. Factors
Impeding Staff Provision of Support There was general agreement that a lack of
nursing staff and staff time were institutional facimpeding professionals from giving sup-
tors
port. Other factors included lack of communi-
physicians to the staff and family, inconsistency of staff, and the medical system bureaucracy. A physician was particularly disgruntled with the obstacles to giving supcation from the
port and said:
’
We don’t do things adequately or constantly enough. Modern health centers are wrongly conceived. When loved ones are dangerously ill and suffer extreme distress, the setting should be considered with great skill, love, and care. The architecture doesn’t lend itself to this--people are herded into buildings. We need twice as many nurses, need MDs to feel less pressured, less coerced. Desperate financial needs of families and enormous nonmedical costs. There is a large federal budget which could be focused on making people’s lives in this situation more manageable.
Lack of staff, too intense workloads, and the politics of physician-nurse communication were reasons staff members cited for personal inability to give the support they thought the families required. One staff nurse was very reflective when asked this question. Softly, she said: ’
Sometimes it’s my own personal invotvement.1’rrv too close to the situation and that can get in the way. Sometimes I don’t always know the answer, I brush things aside ... I can’t cope. Sometimes it’s just too painful ... don’t want them [the parents to bare their souls as it’s painful and it hurts for you.
The other major obstacle to providing support identified as the family itself. In this situation, the family members directly resisted the support, manifested anger and denial, or openly clashed with the staff. In a recent study that examined parent and pediatric nurse roles from the perspective of the nurse,26 interpersonal conflicts arose when the parents and the staff had different ideas about what was best for the children. was
Parents’ Criticisms of Staff
support Parents voiced anger and indignation at staff
failure to see them as experts in their children’s care. Parents wanted to participate in care,
wanted to be told results of tests promptly, and wanted the staff to hear their concerns about their children and to treat their concerns as legitimate. For example, one mother was furious as she recounted problems getting the staff to listen to her regarding her daughter’s N. I am so pissed! Every night, every admission, after 48 hours they screw around with her N. There are intems, residents, students ... I know they have to team but none of them can get a blood retum.1 tell them to call the nurse clinician as she can handle her line and get a blood return. Why won’t they listen? I’m so mad, my daughter is all I have ... she’s my entire life. Why must we go through things that are unneces-
sary ?
Findings in the literature describe two prominent problems with support: (1) professionals’ lack of respect for parents’ expertise in caring for their ill children, and (2) conflict resolution between the staff and the parents 27-2$ Health Professionals
as Parents
When health professionals were asked what help they would want if they were the parents of a child with cancer, they became very verbal. The provision of knowledge and information was the most consistent answer (n 17). The next most consistent answer was emotional support and caring. Health professionals expressed concerns that they would want their child treated as an individual and not as a diagnosis, that their opinions as parents should be respected, and that they wanted to be very involved in the decisionmaking process. Interestingly, the professionals indicated that they would want the same things that the parents complained about not getting (see above). One nurse clinician commented on the difficulties of parents exposed to a large number of hospital staff members: &dquo;I’d want to know the strange face ... who they are and how they fit in with the team, especially when you don’t know who they are or why they are there.&dquo; For some professionals, trying to envision being the parent of a child with cancer was overwhelming. The need to control and to be assertive as a parent came through clearly from the health professionals. One caregiver exclaimed: &dquo;I don’t know ... l can’t picture it! I’d be a pain in the ass!&dquo; Others recognized that being a professional in the field of oncology would alter the
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=
185
situation. A nurse tearfully offered this response: &dquo;My situation would be different because of what I know. I’d want someone to talk to if needed but I’d pretty much want to be left alone. I’d be obnoxious... I’d want to see the chart and to read the bone marrows. I’d tell the social worker to get the hell out of the room!&dquo;
’
port Conclusions In conclusion, health professionals and parents defined
support
Identi fying Parents’Support Providers
as
Although health professionals and the parents could identify similar definitional aspects of support, there was minimal congruity between them
’
out-of-town parents with few visitors have the potential to not be recognized as receiving sup-
in listing people who were considered supportive to the parents. For individual families, the professionals were asked to identify whom they thought were most supportive to the parents. This list was compared with the lists from parents. For only two parents did the health professionals correctly identify the individuals the parents listed as supportive. Both of these parents were extremely verbal and had been labeled as &dquo;aggressive parents.&dquo; These parents clearly voiced their needs and desires. Health professionals (n = 31) listed staff as most supportive to these families; only rarely did
they identify any nonmedical people as supportive. A physician’s assistant was unable to identify any support providers for the families, and a child life worker identified persons other than health professionals as the support providers. However, for four families in the bone marrow
transplant unit, the health professionals included nonmedical individuals. The professionals’ exposure to the families is much greater in the bone marrow transplant unit, and this allows the staff to be aware of the relationships parents have with others. For the health professionals on the regular pediatric units, admissions are much quicker and there are fewer opportunities for the staff to know who the support providers are for each family. Health professionals’ inability to recognize supportive members of these parents’ networks was disturbing. The few nonprofessional support providers whom the health professionals identified were primarily visitors or persons the parents called or discussed with the professionals. Recognizing only highly visible members of support networks severely limits our conceptualizations of how and from whom parents receive support. Quiet, nondemanding parents or _
as
support similarly. Parents defined caring, and professionals defined it
being available. Knowing what support meant parents did
not coincide with the health professionals’ accurately identifying support providers. At best, the health professionals’ predictioris about who is supportive in any given case seems random and may be biased. LaMontagne and Pawla~9 studied parents of children in pediatric intensive care units and found that social support was a frequently used coping strategy. The authors recommend that staff assess- who its supportive for the parents. Findings from their study are applicable in the case of childhood cancer, particularly during the times of repeated hospitalizations or during a bone marrow transplant : Admission notes should include not only a listing of individuals from whom the parents receive support, but also the type of support received. Weekly updates on the parents’ perceptions of support should offer information regarding how the perceptions of support and the need for support alter over time. Nurses should reconsider how we assess family needs and how judgments are made regarding who is supportive to the parents. Bonds such as the parent-to-parent relationships need to be recognized and nurtured by health professionals. If we are unable to identify correctly the dynamics involved in support of families, our interventions may be misguided. Michael and Copeland3° noted the need for a broader research agenda in psychosocial oncology. They proposed an ecological framework that extends research and interventions from the individual to to
include the family, schools, and communities and the interactions occurring in these areas. They also urged inclusion of health professionals as subjects to better understand the transactions between caregivers and families. Clearly, additional work is needed to determine which factors alter parents’ perceptions of support. Social network memberships and listings of support providers need to be compared before, during, and after illness. Thorough infor-
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186
mation about parents’ perceptions of support should be an integral component of family assessments. We must gather additional data- regarding how parents view our education) efforts and whether, and when, teaching is considered most supportive. Ultimately, with these combined efforts, we should learn more
.
about how parents seek and receive support when their child has cancer.
Acknowledgment The author thanks Dr Art Hansen and the reviewers for their comments on this paper. ’
I,
References 1. Williams HA: Social support Its definition and
parents of children with
cancer.
use by Unpublished manuscript,
1991 2. Williams HA: Perception of social support Nurs Times 84:52, 1988 (short reports)
3. Education Committee, Association of Pediatric Oncology Nurses: Scope of Practice and Outcome Standards of Practice for Pediatric Oncology Nursing. McLean, VA, Association of Pediatric Oncology Nurses, 1985 4. LaRocco J, House J, French J: Social support, occupational stress and health. J Soc Health 21:202-218, 1980 5. Antonucci T, Depner C: Social support and informal helping relationships, in Wills T (ed): Basic Processes in Helping Relationships. New York, NY, Academic, 1982, pp 233-254 6. Thoits P: Conceptual, methodological, and theoretical problems in studying social support as a buffer against life stress. J Health Soc Behav 23:145-159, 1982 7. Heller K, Swindle R: Social networks, perceived social support, and coping with stress, in Felner R, Jason L, Moritsugu J, et al (eds): Preventive psychology. Theory, Research and Practice, Elmsford, NY, Pergamon, 1983, pp 87-103 8. Shumaker S, Brownell A: Toward a theory of social support: Closing conceptual gaps. J Soc Issues 40:11-36, 1984 9. Wortman C. Dunkle-Schetter C: Conceptual and methodological issues in the study of social support, in Baum A, Taylor S, Singer J (eds): Handbook of Psychology and Health. Hillsdale, NJ, Lawrence Erlbaum, 1987, pp 63-108 10. Ryan M, Austin A: Social supports and social networks in the aged. Image 21:176-180, 1989 11. Rook K: The negative side of social interaction: Impact on psychological well-being. J Pers Soc Psych 5:1097-
1108,1984 of
12. Ueberman M: Social supports—The consequences psychologizing: A commentary. J Consult Clin Psychol
54:461-465, 1986 13. Barrera M: Distinctions between social support conmeasures, and models. Am J Community Psychol
cepts,
14:413-445, 1986 14. Bloom J: Social support systems and
cancer:
A
con-
ceptual view, in Cohen J (ed): Psychosocial Aspects of Cancer.
New York, NY, Raven, 1982, pp 129-149
15. Maxwell M: The
use
of social networks to
help cancer
patients maximize support. Cancer Nursing 5:275-281, 1982 16. Mitchell JC: Network procedures, in Frick D (in corporation with Wolfgang Hoefert H): The Quality of Urban Life. Berlin, Germany, de Gruyter, 1986, pp 73-92 17. Wortman C: Social support and the cancer patient Conceptual and methodological issues. Cancer 53 :2339-
2360, 1984 (suppl 10) 18. NorbeckJ: Social support, in Fitzpatrick J, Taunton R, Benoliel J (eds): Annual Review of Nursing Research. New York, NY, Springer, 1988, pp 85-109 19. Moore I, Kramer R, Perin G: Care of the family with a child with cancer: Diagnosis and early stages of treatment. Oncol Nurs Forum 13:60-66, 1986 20. Bakke K, Pomietto M: Family care when a child has late stage cancer: A research review. Oncol Nurs Forum 13:71-76, 1986 21. Kalnins IV, Churchill MP, Terry GE: Concurrent stresses in families with a leukemic child. J Pediatr Psychol 5:81-92, 1980 22. Morrow G, Hoagland A, Carnrike C: Social support and parental adjustment to pediatric cancer. J Consult Clin Psychol 49:763-765, 1981 23. Williams HA: Social support and social networks: A review of the literature. J Pediatr Oncol Nurs 5:6-10, 1988 24. McCallister L, Fischer C: A procedure for surveying personal networks, in Burt R, Minor M (eds): Applied Network Analysis. Beverly Hills, CA, Sage, 1983, pp 75-88 25. Miles M, Huberman AM: Qualitative Data Analysis. Beverly Hills, CA, Sage, 1984 26. Brown J, Ritchie J: Nurses perceptions of parent and nurse roles in caring for hospitalized children. CHC 19 :28-
36, 1990 27. Hayes V, Knox J: The experience of stress in parents of children hospitalized with long-term disabilities. J Adv Nurs 9:333-341, 1984 28. Chesler M, Barbarin O: Relating to the medical staff: How parents of children with cancer see the issues. Health Soc Work 9:49-65, 1984 29. LaMontagne LL, Pawlack R: Stress and coping of parents of children in a pediatric intensive care unit. Heart Lung 19:416-421, 1990 30. Michael BE, Copeland DR: Psychosocial issues in childhood cancer. An ecological framework for research. Am J Pediatr Hematol Oncol 9:73-83, 1987
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SUPPORT is a central tenet in onNurses assess the need for support and offer support to families on a daily basis. However, the definition of support is generally taken for granted. Everyone assumes that they know what is meant by &dquo;social support.&dquo; Yet research that asks health care professionals what they mean by support is curiously missing in the oncology literature. The literature is also without any studies that compare staff mem-
SOCIAL cology nursing.
From the Department of Anthropology,
Florida, Gainesville, FL
University of
Supported by a Pre-Doctoral Fellowship (National Research Service Award) from the National Cancer Institute, and funding from the Nurses Educational Funds. The views expressed in this report are those of the author and do not necessarily reflect the views of the funding agencies. Address reprint requests
to
Holly Ann Williams, RNC,
MN, 623 SW 21st Ave, Gainesville,
FL 32601.
or what is supportive for parents with parents’ perception of support. This article reports findings comparing health care professionals’ perceptions and definitions of support with the perceptions and definitions of support given by parents of children with cancer. I wanted to know if parents and health care providers defined and described support similarly. I also wanted to know if the staff taking care of children with cancer were accurate in assessing who the parents identified as their most supportive contacts. These findings are a component of a larger study’2 focused on understanding why some parents of children with cancer seem to have more support than others, particularly during those periods when the child is in the hospital.
bers’ perceptions of who
Review of Literature Social Support-What Do We
Really Mean? simultaneously one of the
Social support is commonly used and
most
180
Downloaded from jpo.sagepub.com at UCSF LIBRARY & CKM on April 1, 2015
one
of the most
181
poorly defined constructs. The fourth outcome standard of practice for pediatric oncology nurs-
ing3
focuses
on
psychosocial
care.
Criteria for
outcome include assessment of stressors and
coping strategies of family members and of the adequacy of family support systems. Yet clinicians and researchers do not agree on a definition of support, and the operationalization of the construct varies widely~-10 There is agreement now that support is a multidimensional construct. When referring to support, each component of the construct should be clearly defined and operationalized.&dquo;,12 Typologies of support generally refer to the areas of instrumental aid (material assistance), affective support, and informational support. Barrera~3 conceptualized social support as consisting of the areas of perception of support, enacted support, and social embeddedness. Perception of support referred to the perception of being connected with others in a reliable manner, enacted support was described as actions of others toward the person in need, and social embeddedness implied social relations with significant others. 13 1 used Barrera’s definitions for this research, although I redefined social embeddedness to refer to the parents’ social support networks.
Social Network Social networks refer to linkages between individuals. These linkages, or ties, vary in structure and function?14-16 Resources such as social support flow across such ties. (For more extensive reviews on social support and social networks see Heller and Swindle, 7 Wortman,l’ and Norbeck.18)
Parents and the Need forSupport
Dealing with all aspects of childhood cancer is challenge for most families. Parents need support throughout the course of the illness and after treatment.19,20 Studying 45 families of children with leukemia over a 20-month period, Kalnins et a121 found that families required support for more than just treatment issues. Support was required for a wide range of problems, such as medical complications of the ill child, financial problems, and deaths of others. Morrow et alzz found that the amount of perceived support received was positively associated with psychosoa
adjustment in parents of children with can(See Williamsz3 for a more complete review on social support specific to parents of children with cancer.) Perception of care from the perspective of both the health professional and the parent of a cial
cer.
sick child is an area that needs to be addressed. An extensive literature review failed to find research in this area. This report attempts to address this deficit in the pediatric oncology literature.
Methods
Sample and Setting A nonrandom sample of parents or other primary caretakers of children with cancer was drawn from the inpatient admissions of two general pediatric units and a bone marrow transplant unit in a large university teaching hospital. I interviewed the families of 15 children. The sample consisted of 14 women and 3 men; 15 were parents (12 mothers and 3 fathers); I was a grandmother; and 1 was an aunt. Although not parents, the grandmother and the aunt were primary caretakers for the ill child. Most of the parents (n 13) interviewed were also primary caretakers. The hospital stays were managed primarily by the mothers, and fathers were rarely seen in the rooms. Therefore, the sample reflected a greater participation by women. Ten parents were married, 1 was separated, and 4 were divorced. The grandmother was married, and the aunt was single. I also interviewed 33 health care professionals involved in the care of these children. Twentytwo nurses, 2 physician assistants (PAs), 4 physicians, and 1 child life therapist agreed to be interviewed. The children’s ages ranged from 2 years to 19 years. There were 6 girls and 9 boys, and all had been diagnosed within the past 3.5 years. =
Procedure The
study consisted Participant observation
of several components. and in-depth interviews were used to collect data to describe parents’ experiences of parenting a child with cancer. Although focused primarily on what happened during hospitalizations, I also asked questions about support at home. Parents were observed in their children’s hospital rooms for periods of 5
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182
minutes at a time. Observations occurred during the day and evening shifts, and timing varied. Averaging 13 visits per family (15 families), I made 194 observations. To find out who was most supportive to the parents during the periods of their child’s illness and hospitalizations, I asked the parents to fill out a social network inventory (modified from McCallister and Fische~4). They listed the persons who were important to them during their child’s illness (a free listing of friends, family members, health professionals, etc) and indicated whether each person lived within 5 miles of them and how long they had known each person. For each person on the list, the parents rated the amount of support they felt they had received from the individual. Rating was on a scale from 0 (no support at all) to 100 (the highest level of support that they could imagine). The social network inventory was adapted from a procedure designed by McCallister and Fischer,24 used to study personal networks by mass survey. The instrument was altered to allow the parents to list as many individuals as they wished. This was done so that I could describe the types of networks that parents have during the experience of parenting a child with cancer. Reliability of my adapted social network inventory has not been established because there has been no prior use of this instrument. I compared the findings from the social network inventory with the data obtained from the interview to establish face validity. I conducted in-depth interviews with the health professionals to determine their definition of support, what things impeded giving these families support, and what they would want for support if they were parents of a child with cancer. In addition, each health professional was asked to list the individuals they considered most supportive to the parents during the time of the child’s illness and hospitalizations. The health professionals were asked to list supportive persons only for the families for whom they personally had provided care. Each of the health professionals interviewed cared for these families on more than one occasion.
Analysis of Data were tape-recorded and tranUsing content analysis on the extensive
All interviews
scribed.
field notes and interview data, I identified themes pertaining to support providers and the mechanisms of support. Conceptual definitions of sup-
port were obtained from both the parents and the health professionals. Qualitative data matrices,25 based on Barrera’s definitions of support, 13 were used to code support behaviors into the dimensions of enacted and perceived support. Frequency measures were tabulated on the content-analyzed data. Representative verbatim quotes in this article provide vivid details that illustrate the subjects’ interpretations of their ex-
periences. Results and Discussion
Parents’Definitions ofSupport Parents defined support consistently in affective terms. The parents offered examples of those who provided affective support: &dquo;People who care, who are easy to talk to, and who listen.&dquo; The ability to listen well and to show compassion were important aspects of affective support. Caring was a central theme expressed by the parents: &dquo;Someone just to be there, to hold me and let me cry.&dquo;
Professionals’ Definitions of Support The overwhelming majority of the staff faltered when asked to define what support was. One nurse commented: &dquo;Everyone knows what it is, but how do you say it? The extra, what goes above and beyond the normal care.&dquo; Another nurse said: &dquo;No one ever gave me a lesson on support, you just innately know what it is.&dquo; Professionals could describe actions but were unable to clearly articulate a definition of those actions. &dquo;Sometimes you stumble, but you know you are there to ease the situation.&dquo; Another nurse said, &dquo;I’m at a loss for words. In dealing with oncology patients it is more focused than with chronic or surgical patients, especially with pediatric patients. It just becomes a vital part of your care.&dquo; The general consensus was that support was &dquo;being available&dquo;-sitting down, joking with the parent, helping to carry others through difficult emotional times, and helping the parents to cope. The staff clearly described an affective component in their efforts to define support. The affective dimension to support was best ex-
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pressed by a staff nurse who have a caring heart.&dquo;
said: &dquo;In this
job,
The second component of the staff definition of support was knowledge. Being knowledgeable and letting the family know that they were being supported with nursing and medical care was defined as support. Comments on providing knowledge included, &dquo;Answer questions concerning their child, tell them everything that you know, teach them to reach an optimal level of coping.&dquo;
Parents’ Descriptiorrs of EnactedSupport Again, affective behaviors were the most consistently identified aspect of enacted support, both at home and when the child was hospitalized. Information, such
as education about the child’s disease, was provided only by the hospital staff. Parents discussed receiving this type of information only during periods of hospitalizations. (Teaching is an integral component of pediatric oncology nursing, both in the hospital and in clinic or office settings. I interviewed the parents while their children were in the hospital. Although the interview questions were broadly worded, I believe the primacy of the hospital experiences altered the perceptions of the parents.) Parents mentioned instrumental support in terms of assistance with household management. This assistance included picking up the mail, child care for siblings, and watching the house when the parents were away. Primarily family members offered this help, assisted by neighbors and friends.
Parent-to-parent networks developed quickly in the
hospital.
Parents shared
news
about the
status of their children and sought one another out for emotional support. Parents discussed these relationships in their interviews. These parent-to-parent contacts were seen during the
observations made in the hospital rooms and corridors. Health professionals never men-
daily
tioned these parent-to-parent relationships. It unclear whether the professionals were unaware of the existence of these ties or whether they did not see these relationships as valid indicators of support for the parents. Parents cried together, spent breaks together away from their children, and encouraged one another during difficult times. Parents explained
was ’
that other parents knew better than the home what the experience was like.
people at
Professionals’ Descriptions of Enacted Support When asked about the most important things health professional could do for a family, 29 professionals ranked &dquo;caring&dquo; as the primary activity. The components of caring included being available, being consistent with the family, and showing oneself as supportive. Caring was seen as &dquo;showing oneself as being someone who knew the families as individuals&dquo; and &dquo;someone who offered empathy.&dquo; One caregiver qualified her statement &dquo;I don’t like to take control, but they need someone available for issues to be discussed.&dquo; Understanding and supporting the parent role was also an aspect of caring. A social worker expressed the need for professionals to support the parent role: &dquo;Allow a parent to continue to be a parent. Many parents have told me that they feel their child has been taken away from them by the doctors, the nurses, the social workers, the drugs. We can’t assume the role of parent for these people.&dquo; Consistent with the definition of support, offering education was the next most important activity, cited by 18 staff members. A nurse clinician described, at length, the need for educaa
tion : Make sure they are educated and know what the disease does or can do emotionally and physically. Make them feel that they can ask questions. It’s a busy place for a parent who isn’t aggressive. Be careful how you say things ... two, three words can change a though~ Nurses need to tell them that flexibility [ie, fiexibility in providing care] isn’t bad-the system doesn’t allow for consistency [ referring to the parents’ concerns about the number of individuals from whom they received information].
interesting aspect of this was that parents identified teaching as a component of support. The cause of this disparity is unclear. The
rarely
assume teaching is an basic component of care and thereit as a given. Support may be viewed as
Perhaps parents simply
expected, fore
see
something
extra or
special.
assisting with needed rethe third aspect of enacted support. This included helping with finances, referrals, The staff identified
sources as
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assistance with other family members, and helping the parents at home. Factors
Impeding Staff Provision of Support There was general agreement that a lack of
nursing staff and staff time were institutional facimpeding professionals from giving sup-
tors
port. Other factors included lack of communi-
physicians to the staff and family, inconsistency of staff, and the medical system bureaucracy. A physician was particularly disgruntled with the obstacles to giving supcation from the
port and said:
’
We don’t do things adequately or constantly enough. Modern health centers are wrongly conceived. When loved ones are dangerously ill and suffer extreme distress, the setting should be considered with great skill, love, and care. The architecture doesn’t lend itself to this--people are herded into buildings. We need twice as many nurses, need MDs to feel less pressured, less coerced. Desperate financial needs of families and enormous nonmedical costs. There is a large federal budget which could be focused on making people’s lives in this situation more manageable.
Lack of staff, too intense workloads, and the politics of physician-nurse communication were reasons staff members cited for personal inability to give the support they thought the families required. One staff nurse was very reflective when asked this question. Softly, she said: ’
Sometimes it’s my own personal invotvement.1’rrv too close to the situation and that can get in the way. Sometimes I don’t always know the answer, I brush things aside ... I can’t cope. Sometimes it’s just too painful ... don’t want them [the parents to bare their souls as it’s painful and it hurts for you.
The other major obstacle to providing support identified as the family itself. In this situation, the family members directly resisted the support, manifested anger and denial, or openly clashed with the staff. In a recent study that examined parent and pediatric nurse roles from the perspective of the nurse,26 interpersonal conflicts arose when the parents and the staff had different ideas about what was best for the children. was
Parents’ Criticisms of Staff
support Parents voiced anger and indignation at staff
failure to see them as experts in their children’s care. Parents wanted to participate in care,
wanted to be told results of tests promptly, and wanted the staff to hear their concerns about their children and to treat their concerns as legitimate. For example, one mother was furious as she recounted problems getting the staff to listen to her regarding her daughter’s N. I am so pissed! Every night, every admission, after 48 hours they screw around with her N. There are intems, residents, students ... I know they have to team but none of them can get a blood retum.1 tell them to call the nurse clinician as she can handle her line and get a blood return. Why won’t they listen? I’m so mad, my daughter is all I have ... she’s my entire life. Why must we go through things that are unneces-
sary ?
Findings in the literature describe two prominent problems with support: (1) professionals’ lack of respect for parents’ expertise in caring for their ill children, and (2) conflict resolution between the staff and the parents 27-2$ Health Professionals
as Parents
When health professionals were asked what help they would want if they were the parents of a child with cancer, they became very verbal. The provision of knowledge and information was the most consistent answer (n 17). The next most consistent answer was emotional support and caring. Health professionals expressed concerns that they would want their child treated as an individual and not as a diagnosis, that their opinions as parents should be respected, and that they wanted to be very involved in the decisionmaking process. Interestingly, the professionals indicated that they would want the same things that the parents complained about not getting (see above). One nurse clinician commented on the difficulties of parents exposed to a large number of hospital staff members: &dquo;I’d want to know the strange face ... who they are and how they fit in with the team, especially when you don’t know who they are or why they are there.&dquo; For some professionals, trying to envision being the parent of a child with cancer was overwhelming. The need to control and to be assertive as a parent came through clearly from the health professionals. One caregiver exclaimed: &dquo;I don’t know ... l can’t picture it! I’d be a pain in the ass!&dquo; Others recognized that being a professional in the field of oncology would alter the
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situation. A nurse tearfully offered this response: &dquo;My situation would be different because of what I know. I’d want someone to talk to if needed but I’d pretty much want to be left alone. I’d be obnoxious... I’d want to see the chart and to read the bone marrows. I’d tell the social worker to get the hell out of the room!&dquo;
’
port Conclusions In conclusion, health professionals and parents defined
support
Identi fying Parents’Support Providers
as
Although health professionals and the parents could identify similar definitional aspects of support, there was minimal congruity between them
’
out-of-town parents with few visitors have the potential to not be recognized as receiving sup-
in listing people who were considered supportive to the parents. For individual families, the professionals were asked to identify whom they thought were most supportive to the parents. This list was compared with the lists from parents. For only two parents did the health professionals correctly identify the individuals the parents listed as supportive. Both of these parents were extremely verbal and had been labeled as &dquo;aggressive parents.&dquo; These parents clearly voiced their needs and desires. Health professionals (n = 31) listed staff as most supportive to these families; only rarely did
they identify any nonmedical people as supportive. A physician’s assistant was unable to identify any support providers for the families, and a child life worker identified persons other than health professionals as the support providers. However, for four families in the bone marrow
transplant unit, the health professionals included nonmedical individuals. The professionals’ exposure to the families is much greater in the bone marrow transplant unit, and this allows the staff to be aware of the relationships parents have with others. For the health professionals on the regular pediatric units, admissions are much quicker and there are fewer opportunities for the staff to know who the support providers are for each family. Health professionals’ inability to recognize supportive members of these parents’ networks was disturbing. The few nonprofessional support providers whom the health professionals identified were primarily visitors or persons the parents called or discussed with the professionals. Recognizing only highly visible members of support networks severely limits our conceptualizations of how and from whom parents receive support. Quiet, nondemanding parents or _
as
support similarly. Parents defined caring, and professionals defined it
being available. Knowing what support meant parents did
not coincide with the health professionals’ accurately identifying support providers. At best, the health professionals’ predictioris about who is supportive in any given case seems random and may be biased. LaMontagne and Pawla~9 studied parents of children in pediatric intensive care units and found that social support was a frequently used coping strategy. The authors recommend that staff assess- who its supportive for the parents. Findings from their study are applicable in the case of childhood cancer, particularly during the times of repeated hospitalizations or during a bone marrow transplant : Admission notes should include not only a listing of individuals from whom the parents receive support, but also the type of support received. Weekly updates on the parents’ perceptions of support should offer information regarding how the perceptions of support and the need for support alter over time. Nurses should reconsider how we assess family needs and how judgments are made regarding who is supportive to the parents. Bonds such as the parent-to-parent relationships need to be recognized and nurtured by health professionals. If we are unable to identify correctly the dynamics involved in support of families, our interventions may be misguided. Michael and Copeland3° noted the need for a broader research agenda in psychosocial oncology. They proposed an ecological framework that extends research and interventions from the individual to to
include the family, schools, and communities and the interactions occurring in these areas. They also urged inclusion of health professionals as subjects to better understand the transactions between caregivers and families. Clearly, additional work is needed to determine which factors alter parents’ perceptions of support. Social network memberships and listings of support providers need to be compared before, during, and after illness. Thorough infor-
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mation about parents’ perceptions of support should be an integral component of family assessments. We must gather additional data- regarding how parents view our education) efforts and whether, and when, teaching is considered most supportive. Ultimately, with these combined efforts, we should learn more
.
about how parents seek and receive support when their child has cancer.
Acknowledgment The author thanks Dr Art Hansen and the reviewers for their comments on this paper. ’
I,
References 1. Williams HA: Social support Its definition and
parents of children with
cancer.
use by Unpublished manuscript,
1991 2. Williams HA: Perception of social support Nurs Times 84:52, 1988 (short reports)
3. Education Committee, Association of Pediatric Oncology Nurses: Scope of Practice and Outcome Standards of Practice for Pediatric Oncology Nursing. McLean, VA, Association of Pediatric Oncology Nurses, 1985 4. LaRocco J, House J, French J: Social support, occupational stress and health. J Soc Health 21:202-218, 1980 5. Antonucci T, Depner C: Social support and informal helping relationships, in Wills T (ed): Basic Processes in Helping Relationships. New York, NY, Academic, 1982, pp 233-254 6. Thoits P: Conceptual, methodological, and theoretical problems in studying social support as a buffer against life stress. J Health Soc Behav 23:145-159, 1982 7. Heller K, Swindle R: Social networks, perceived social support, and coping with stress, in Felner R, Jason L, Moritsugu J, et al (eds): Preventive psychology. Theory, Research and Practice, Elmsford, NY, Pergamon, 1983, pp 87-103 8. Shumaker S, Brownell A: Toward a theory of social support: Closing conceptual gaps. J Soc Issues 40:11-36, 1984 9. Wortman C. Dunkle-Schetter C: Conceptual and methodological issues in the study of social support, in Baum A, Taylor S, Singer J (eds): Handbook of Psychology and Health. Hillsdale, NJ, Lawrence Erlbaum, 1987, pp 63-108 10. Ryan M, Austin A: Social supports and social networks in the aged. Image 21:176-180, 1989 11. Rook K: The negative side of social interaction: Impact on psychological well-being. J Pers Soc Psych 5:1097-
1108,1984 of
12. Ueberman M: Social supports—The consequences psychologizing: A commentary. J Consult Clin Psychol
54:461-465, 1986 13. Barrera M: Distinctions between social support conmeasures, and models. Am J Community Psychol
cepts,
14:413-445, 1986 14. Bloom J: Social support systems and
cancer:
A
con-
ceptual view, in Cohen J (ed): Psychosocial Aspects of Cancer.
New York, NY, Raven, 1982, pp 129-149
15. Maxwell M: The
use
of social networks to
help cancer
patients maximize support. Cancer Nursing 5:275-281, 1982 16. Mitchell JC: Network procedures, in Frick D (in corporation with Wolfgang Hoefert H): The Quality of Urban Life. Berlin, Germany, de Gruyter, 1986, pp 73-92 17. Wortman C: Social support and the cancer patient Conceptual and methodological issues. Cancer 53 :2339-
2360, 1984 (suppl 10) 18. NorbeckJ: Social support, in Fitzpatrick J, Taunton R, Benoliel J (eds): Annual Review of Nursing Research. New York, NY, Springer, 1988, pp 85-109 19. Moore I, Kramer R, Perin G: Care of the family with a child with cancer: Diagnosis and early stages of treatment. Oncol Nurs Forum 13:60-66, 1986 20. Bakke K, Pomietto M: Family care when a child has late stage cancer: A research review. Oncol Nurs Forum 13:71-76, 1986 21. Kalnins IV, Churchill MP, Terry GE: Concurrent stresses in families with a leukemic child. J Pediatr Psychol 5:81-92, 1980 22. Morrow G, Hoagland A, Carnrike C: Social support and parental adjustment to pediatric cancer. J Consult Clin Psychol 49:763-765, 1981 23. Williams HA: Social support and social networks: A review of the literature. J Pediatr Oncol Nurs 5:6-10, 1988 24. McCallister L, Fischer C: A procedure for surveying personal networks, in Burt R, Minor M (eds): Applied Network Analysis. Beverly Hills, CA, Sage, 1983, pp 75-88 25. Miles M, Huberman AM: Qualitative Data Analysis. Beverly Hills, CA, Sage, 1984 26. Brown J, Ritchie J: Nurses perceptions of parent and nurse roles in caring for hospitalized children. CHC 19 :28-
36, 1990 27. Hayes V, Knox J: The experience of stress in parents of children hospitalized with long-term disabilities. J Adv Nurs 9:333-341, 1984 28. Chesler M, Barbarin O: Relating to the medical staff: How parents of children with cancer see the issues. Health Soc Work 9:49-65, 1984 29. LaMontagne LL, Pawlack R: Stress and coping of parents of children in a pediatric intensive care unit. Heart Lung 19:416-421, 1990 30. Michael BE, Copeland DR: Psychosocial issues in childhood cancer. An ecological framework for research. Am J Pediatr Hematol Oncol 9:73-83, 1987
Downloaded from jpo.sagepub.com at UCSF LIBRARY & CKM on April 1, 2015
