When cancer strikes a family: Psychosocial issues in pediatric oncology

Introduction

Many children do not understand what is happening in the midst of a cancer diagnosis and treatment. Large numbers experience psychosocial dysfunction such as anger, fear, depression, sleep disturbances, unjustifiable guilt, or panic. A cancer diagnosis and treatment also impact siblings, parents, and the family as a whole. This article will review a number of psychosocial issues facing the pediatrician's patient with cancer and discusses practice strategies for their identification and treatment.

Scope of the problem

Unfortunately, psychosocial care for children with cancer and their families is not systematically provided across or within pediatric cancer programs, and few programs use empirically supported assessments or treatments.¹ As a result, an effort has been made to develop standards for the assessment and treatment of the psychosocial needs of children with cancer.²

For the pediatrician attempting to better understand the impact of psychosocial issues, it is useful to think about several different domains that impact children with cancer:³

·      Physical

·      Emotional

·      Cognitive

·      Familial

Additionally, development plays a significant role as to how the pediatric patient may experience psychosocial dysfunction. Patients may experience issues in only some of the domains and may have issues in different domains over time.

In the emotional/behavioral spectrum, the infant/toddler may experience dysfunction related to self-soothing while the preschool-aged child may develop temper tantrums and procedural resistance when control is threatened or with frequent changing routines because of their illness. School-aged children may experience significant aversion to medicine, diets, or another domain compared with siblings as a result of feeling unfairness or a disruption of normalcy. Adolescents may display risk taking and nonadherence behaviors as well as behaviors for the benefit of social/peer values with less concern about the immediate family.⁴

Related: The price of surviving childhood cancer

In the cognitive domain, normal development of sensory and motor curiosity in the infant/toddler may be disrupted by pain and treatment discomfort. As they develop imagination and magical thinking, preschoolers can develop complex fears and fantasies linked to both their treatment and treatment environment. School-aged children begin to develop concrete thinking about the length and number of treatments and begin to develop an understanding of death. The adolescent can understand both abstract and theoretical constructs about death as well as critical thinking, planning, and agency related to their treatment.⁴

In the psychosocial domain, difficulties with feeding and comfort can lead to caregiver mistrust and attachment issues in infancy. Preschoolers are at risk of losing the sense of personal control related to their environment and tasks such as eating and toileting that may result in fear, anxiety, doubt, and frustration. School disruption can lead to an inability to participate in activities valued by the family, resulting in a sense of inferiority and guilt. Adolescents are at risk of frustration and confusion if they are unable to find acceptance in peer groups and subsequent feelings of loneliness and isolation.⁴

Parents and families are also at risk for psychosocial dysfunction. Families with an existing prediagnosis dysfunction and those with poor psychosocial support networks appear to be at greatest risk.⁵ Parents may experience issues with marital satisfaction as well as individual problems with anxiety, stress, and depression. This can be made worse by ineffective social support and a lack of awareness from family or friends that words and actions can negatively impact the family, even when trying to help. Similarly, families also experience a sense of overinvolvement with some and feeling of abandonment from certain people in their life.⁶

Finally, siblings of children with cancer are an at-risk group and experience both different and similar feelings of psychosocial dysfunction such as:^7,8

·      Loss

·      Fear

·      Uncertainty

·      Jealousy

·      Anger

·      Guilt

·      A “forgotten” child

·      Anxiety

·      Depression

·      Diminished sense of self-importance in a family

Unmet needs

Despite the guidelines outlining the need for and best practices for psychosocial care among children with cancer (Table 1), unmet needs remain.⁹

NEXT: ICD-10 codes for psychosocial dysfunction

The following professionals are available to assist with psychosocial needs in pediatric oncology programs:⁹

·      Social workers-96%

·      Child life specialists-93%

·      Psychologists-60%

·      Neuropsychologists-31%

·      Psychiatrists-l19%

Many programs also report having the services of other professionals such as:⁹

·      Art therapists

·      Chaplains

·      Educational specialists

·      Palliative care specialist

Only 39% report having at least 1 Spanish-speaking team member able to address psychosocial needs of children with cancer.⁹

Rather than beliefs in the concept of psychosocial care, its efficacy, evidence basis, or politics, the challenges are much more pragmatic. Cancer programs commonly cite the following as barriers to delivering more psychosocial care to patients:¹⁰

·      Time constraints to provide care

·      Poor reimbursement for provision of psychosocial care

·      Difficulty in recruiting and retaining providers

One might expect that if these barriers exist in oncology programs, the pediatrician might experience even greater barriers. However, the pediatrician may have an advantage in knowing local resources for children who must travel for their cancer care.

Parents also describe a number of unmet needs that the pediatrician might not consider when thinking about psychosocial stressors. Parents of children with cancer describe both instrumental and relational needs relating to caring for their child with cancer as well as other members of the family.¹⁰

More: Reimagining chemotherapy

Instrumental needs are similar to the base of Maslow's hierarchy of physiologic and safety needs.¹¹ Parents often rely food/parking vouchers, dependable childcare for healthy siblings, and flexible work arrangements in order to survive a lengthy hospitalization. If not present, parents risk losing connectedness with either the healthy or ill child and a loss of family income. Parents need and want a hospital environment that allows them support the daily life and care of siblings without cancer.¹⁰

NEXT: What can the pediatric practice do?

Similarly, parents feel that providers are not always cognizant of the impact of care plans on the healthy sibling.¹⁰ Parents indicate that hospital system interventions to address these issues are not begun until problems are raised to a crisis level.

Parents may be suffering from psychosocial distress such as distress or exhaustion and it may not be readily apparent to their care team. Additionally, parents report feeling that the healthcare team sets unrealistic expectations of them that leads to decreased engagement with the team in the care of their child.¹⁰

Recommended: Tackling health literacy in diverse populations

Finally, some of the psychosocial impacts may be delayed as the pediatric patient transitions out of a pediatric practice into adulthood.

For example, pediatric patients report significant worry and distress in a number of areas related to future parenting, relationships and fertility:¹²

·      Thoughts of infertility triggered by a friend having a child.

·      Not knowing if they are infertile.

·      Conflict between information given to patients by their pediatric doctor and their new adult doctor (e.g. Being told you might be able to have children when you had assumed you could not).

·      Disclosing infertility or potential to a partner relationship.

·      Risk of passing cancer genes to offspring

·      Impact of cancer on the ability to parent.

·      Possible early death if cancer recurs.

What can the pediatric practice do?

1. Assess patients for psychosocial distress. While many pediatricians may feel assessing for psychosocial distress among the patient, parent or siblings more appropriately falls into the domain of the oncologist, the psychosocial assessment tool (PAT)^13,14 and the distress thermometer (DT)^15,16 are evidenced based screening tools assessing domains such as family resources, family problems, social support, child and sibling problems. While potentially time consuming, screening is essential to identifying potential issues. The first year after a diagnosis is the highest risk for distress, but a number of different factors contribute to increasing distress of patients, families, and siblings impacted by pediatric cancer.¹

2. Create opportunities to surface problems. Because much of parental distress may not be shared or be directly evident, pediatricians should directly ask parents about economic and caregiving demands or desire for support in children with cancer.

Just as parents are available and supportive for their children, the pediatrician needs to create an environment where parents can share their thoughts, fears and concerns without judgement. The pediatrician should listen as much for what is unsaid as what is unspoken. The pediatrician can reframe family issues in the context what other families have been through may decrease stress. Instead of "doing for" parents, strategize and plan with parents to build on their capabilities to effectively parent the entire family.¹⁰

Make referrals to appropriate support professionals that can help parents address both instrumental and relational needs. Develop resource materials for helping parents to access support groups, church communities or other peer support.

3. Journaling. While there is limited evidence to support journaling as a complementary treatment in pediatrics, there is evidence for is support in the adult literature. Expressive writing has been associated with improved wound healing and immune function in adults, as well as decreased hospital visits in a variety of chronic conditions.^17,18 In adult breast cancer patients expressive writing reduced visits for cancer related morbidities and decreases physical symptoms.¹⁹

If thought of as a self-administered treatment, journaling can easily and inexpensively be administered to pediatric patients and their families. There is also some evidence that these treatments may be as effective as traditional therapy.²⁰ The pediatrician might think of journaling as a preventative psychologic support and encouraged at diagnosis before any psychosocial dysfunction develops.²¹ It may help fill gaps given a shortage of mental health and psychologic support services available in many communities as well as improving communication and allowing the child with cancer a more active role in their treatment.

NEXT: Taking the development approach

4. Develop proactive parenting skills. There are a number of things that the pediatrician can suggest to parents to reduce the negative impact of their illness and reduce stress:²²

·      "Fear of the unknown" can create significant anxiety in children. To the best of their ability parents should be encouraged to explain what is going to happen at a visit or hospitalization.

·      "Rehearsal" can help decrease fear and anxiety. Just seeing the hospital ward may help decrease fear over an upcoming hospitalization.

·      Spending time with other children with cancer can make their child seem more normal.

·      Talking with their child about their cancer so that the child will comfortable bringing issues up.

·      Encouraging parents to identify their child's strengths so that they can support and encourage things their child does well despite their chronic illness.

·      Promote autonomy when possible. Small things, such as choosing the arm from which to have blood drawn, determining when a procedure will occur, or identifying a reward for cooperating, can help children feel in control.

5. Think developmentally. When trying to help patients, parents, and families of children with cancer, a developmental approach is appropriate. See Table 2.

6. Be an education resource for the families’ support network. Parents often report ineffective support, and the pediatrician can help these groups improve their knowledge of how to be supportive. Parents report help with housecleaning, childcare, providing ready-to-make meals, and running errands, such as shopping for groceries and picking up prescriptions, as some of the most helpful things their support network could do.

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7. Address the needs of siblings. The pediatrician has an opportunity to talk with siblings about the impact a sibling’s illness is having on them and address any issues with parents.

In conclusion

Although standards of care for psychosocial assessment and treatment exist for children with cancer and their families, implementation remains suboptimal. The community pediatrician will likely need to address a broad range of psychosocial needs in their patients.

References

1. Kazak AE, Abrams AN, Banks J, et al. Psychosocial assessment as a standard of care in pediatric cancer. Pediatr Blood Cancer. 2015;62 suppl 5:S426-S459.

2. Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ. Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer. 2015;62 suppl 5:S419-S424.

3. Marcus J. Psychosocial issues in pediatric oncology. Ochsner J. 2012;12(3):211-215.

4. Brand S, Wolfe J, Samsel C. The impact of cancer and its treatment on the growth and development of the pediatric patient. Curr Pediatr Rev. 2017;13(1):24-33.

5. Hosoda T. The impact of childhood cancer on family functioning: a review. Graduate Student J Psychol. 2014;15:1-28.

6. Long KA, Marsland AL. Family adjustment to childhood cancer: a systematic review. Clin Child Fam Psychol Rev. 2011;14(1):57-88.

7. Massimo LM, Wiley TJ. Young siblings of children with cancer deserve care and a personalized approach. Pediatr Blood Cancer. 2008;50(3):708-710.

8. Nolbris M, Enskär K, Hellström AL. Experience of siblings of children treated for cancer. Eur J Oncol Nurs. 2007;11(2):106-112.

9. Scialla MA, Canter KS, Chen FF, et al. Implementing the psychosocial standards in pediatric cancer: current staffing and services available. Pediatr Blood Cancer. 2017;64(11):e26634.

10. Mooney-Doyle K, Dos Santos MR, Szylit R, Deatrick JA. Parental expectations of support from healthcare providers during pediatric life-threatening illness: a secondary, qualitative analysis. J Pediatr Nurs. 2017;36:163-172.

11. Kosco M, Warren NA. Critical care nurses' perceptions of family needs as met. Crit Care Nurs Q. 2000;23(2):60-72.

12. Nilsson J, Jervaeus A, Lampic C, et al. “Will I be able to have a baby?” Results from online focus group discussions with childhood cancer survivors in Sweden. Hum Reprod. 2014;29(12):2704-2711.

13. Pai AL, Patiño-Fernández AM, McSherry M, et al. The Psychosocial Assessment Tool (PAT2.0): psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. J Pediatr Psychol. 2008;33(1):50-62.

14. Kazak AE, Schneider S, Didonato S, Pai AL. Family psychosocial risk screening guided by the Pediatric Psychosocial Preventative Health Model (PPPHM) using the Psychosocial Assessment Tool (PAT). Acta Oncol. 2015;54(5):574-580.

15. Patel SK, Mullins W, Turk A, Dekel N, Kinjo C, Sato JK. Distress screening, rater agreement, and services in pediatric oncology. Psychooncology. 2011;20(12):1324-1333.

16. Haverman L, van Oers HA, Limperg PF, et al. Development and validation of the distress thermometer for parents of a chronically ill child. J Pediatr. 2013;163(4):1140.e2-1146.e2.

17. Koschwanez HE, Kerse N, Darragh M, Jarrett P, Booth RJ, Broadbent E. Expressive writing and wound healing in older adults: a randomized controlled trial. Psychosom Med. 2013;75(6):581-590.

18. Pennebaker JW, Colder M, Sharp LK. Accelerating the coping process. J Pers Soc Psychol. 1990;58(3):528-537.

19. Stanton AL, Danoff-Burg S, Sworowski LA, et al. Randomized, controlled trial of written emotional expression and benefit finding in breast cancer patients. J Clin Oncol. 2002;20(20):4160-4168.

20. Elgar FJ, McGrath PJ. Self-administered psychosocial treatments for children and families. J Clin Psychol. 2003;59(3):321-339.

21. Theofanidis D. Chronic illness in childhood: psychosocial adaptation and nursing support for the child and family. Health Sci J. 2007;1(2):1-9.

22. American Academy of Pediatrics. Living with a chronic illness or disability. Available at: https://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/Coping-With-Chronic-Illness.aspx. Updated November 21, 2015. Accessed January 19, 2018.

Dr Bass is chief medical information officer and professor of Medicine and of Pediatrics, Louisiana State University Health Sciences Center–Shreveport. He has nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.