Community Help: When a Family has a Child with Cancer


When a child of someone you know has cancer, it is common to feel worried or sad and want to do something to help.

However, many parents don't know what to say when people offer to help. Sometimes the parents themselves are uncertain what they need. In fact, some parents say, "I'm usually the one helping others," or "I feel embarrassed getting help."

Parents of a child who has just been diagnosed with cancer are often overwhelmed by the new demands of the situation. Sometimes they feel uncomfortable asking friends and family for assistance. Following is information designed to give you ideas about how you can best support a family facing cancer.

Supporting a Family Under Stress Can Help in Many Ways

There are many things you can do to provide informational, practical, and emotional support that can make a significant difference for the quality of life for the child with cancer, the caregivers, and other family members.2 The support of the community can make the family feel cared for, valued, and respected during a time of stress.3 

A community is made up of friends, extended family, neighbors, parents and teachers from school, members and leaders of religious institutions, work place, and other social groupings. There is strong evidence that family caregivers who receive social support:

  • cope better, 4-11  
  • feel less depressed; and 12 
  • and report less stress 13 compared to families who are alone or isolated.

Family caregivers who receive support from their extended family and friends are more likely to be optimistic despite the hardships.14  

Serious stress can heighten the "fight or flight" response in most people. When a person stays in this state for a long period, such as occurs with the extended treatment typical of most children's cancers, it can have longer term health implications for caregivers.15-16 But, the good news is that:

  • care and support provided by friends and community members can benefit those under stress both psychologically and by decreasing the underlying biological signs of stress; 1 
  • social contact can reduce inflammatory,10 cardiovascular, endocrine and immune responses by buffering the effects of stress;15-16 
  • good social support can help improve the quality of care that parents can provide their family; 17  
  • brothers and sisters of a sick child cope better when they and their parents get help from others.18 Siblings who report more direct social support are less depressed and worried, have fewer behavioral problems and show better overall adjustment; and 19  
  • there is evidence that providing care and support to others is good for those who are providing the support.34 In fact, people who provide logistical and emotional support for others live longer lives.

Thinking About the Whole Family

When thinking about supporting a family, think about the whole family. Everyone is affected by the cancer, from the mother and father, to siblings and the child who is sick. Each family member probably needs something a little different and they each have their own style of coping. Some typical issues for different family members include the following:

Mothers

Mother’s have the most challenging time during the period following the child's diagnosis and at the start of treatment.20-22 However, once treatment starts, mothers usually focus on treatment-related needs and psychological distress diminishes.23 Having help and support from friends and family has been shown to substantially improve how mothers adjust to the challenges of having a child with cancer,12,24-27 and her closest friends and family play a particularly important role.28 Mothers tend to seek out and find more friends and family to help them cope with their child's cancer29 compared to fathers, who tend to focus on employment or financial issues.4 

Fathers

A family experiencing the time and financial concerns associated with having a child with cancer will sometimes look more traditional in terms of gender roles. The father frequently tries to maintain work and the mother will sometimes have to cut back or leave her job.29 Fathers may appear less worried than the mothers at diagnosis, but the fathers' anxiety is less likely to decrease over the treatment period while mothers report slightly fewer worries.25 Mothers often look for support from family and friends, while fathers tend to appreciate support from healthcare professionals, extended family members, and church communities.30 

Siblings

Many people focus on the child with cancer, sometimes leaving siblings in the shadows. The often long and complex treatment protocols for patients mean that siblings' needs can become a lower priority for family and oncology care teams. Treatments often involve many visits to the hospital, prolonged hospitalizations, preoccupation of parents, disruptions in home life, and loss of companionship for the sister or brother with cancer. Things can be very difficult for siblings and it shows. They report more anxiety, depression, academic problems, loneliness, isolation, physical health problems,31-32 and family, school and social problems.33 In this stressful and confusing time, it is difficult for parents to provide enough time, support or answers to siblings. Friends and extended family can successfully help siblings understand that they are not alone and that their feelings are important and valid.19 

If the Child Needs Treatment Far From Home

Sometimes specialized treatments are only available at a great distance from the family's home, which can further disrupt the family's routine. Often one parent will have to take an extended leave or quit her/his job and the other parent maintains his/her work schedule and takes care of the siblings and household. This is extremely stressful for the entire family. In this case, logistical support can be very helpful for the parent and children remaining at home. Friends can offer emotional support to the in-hospital parent with phone calls and letters. The in-hospital parent will be very grateful for the help at home. He or she may also want to hear updates on the family members, so she/he feels involved.

If You Live Far Away

There are many things you can do even if you live far away.

  • Provide a listening ear. Call on a regular basis and talk to the child with cancer, siblings, and/or parents - whoever you think you can best support.
  • Send a handwritten card.
  • Find a local restaurant and have them deliver a meal to the home or hospital one night.
  • Stay in touch using email, free calling on Skype or Oovoo, or text messaging with the children or adolescents.
  • Contact the point person and tell them you want to help out and have them let you know if a need arises.

References

1.         Taylor SE. Affiliation and Stress. In: Folkman S, ed. The Oxford Handbook of Stress, Health and Coping. 1st ed. New York: Oxford University Press Inc.; 2011:86-100. 

2.         Glajchen M. The emerging role and needs of family caregivers in cancer care. Journal of Supportive Oncology. Mar-Apr 2004;2(2):145-155. 

3.         Wills TA. Social support and interpersonal relationships. In: Clark MS, ed. Prosocial Behavior Newbury Park, CA: Sage; 1991:265-289. 

4.         Frank NC, Brown RT, Blount RL, Bunke V. Predictors of affective responses of mothers and fathers of children with cancer. Psychooncology. Jul-Aug 2001;10(4):293-304. 

5.         Han HR. Korean mothers' psychosocial adjustment to their children's cancer. Journal of Advanced Nursing. Dec 2003;44(5):499-506. 

6.         Hockenberry-Eaton M, Kemp V, DiIorio C. Cancer stressors and protective factors: predictors of stress experienced during treatment for childhood cancer. Reseach in Nursing and Health. Oct 1994;17(5):351-361. 

7.         Hoekstra-Weebers JE, Jaspers JP, Kamps WA, Klip EC. Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. Journal of Pediatric Psychology. Jun 2001;26(4):225-235. 

8.         Kazak AE, Stuber ML, Barakat LP, Meeske K, Guthrie D, Meadows AT. Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers. Journal of the American Academy of  Child and Adolescent Psychiatry. Aug 1998;37(8):823-831. 

9.         Last BF, Grootenhuis MA. Emotions, coping and the need for support in families of children with cancer: a model for psychosocial care. Patient Education and  Counseling. Feb 1998;33(2):169-179. 

10.       Miller GE, Cohen S, Ritchey AK. Chronic psychological stress and the regulation of pro-inflammatory cytokines: a glucocorticoid-resistance model. Health Psychology. Nov 2002;21(6):531-541. 

11.       Simons L, Ingerski LM, Janicke DM. Social support, coping, and psychological distress in mothers and fathers of pediatric transplant candidates: a pilot study. Pediatric Transplant. Nov 2007;11(7):781-787. 

12.       Speechley KN, Noh S. Surviving childhood cancer, social support, and parents' psychological adjustment. Journal of Pediaticr Psychology. Feb 1992;17(1):15-31. 

13.       Dunkel-Schetter C, Feinstein LG, Taylor SE, Falke RL. Patterns of coping with cancer. Health Psychology. 1992;11(2):79-87. 

14.       Schroevers MJ, Helgeson VS, Sanderman R, Ranchor AV. Type of social support matters for prediction of posttraumatic growth among cancer survivors. Psychooncology. Feb 27 2009. 

15.       Seeman TE, McEwen BS. Impact of social environment characteristics on neuroendocrine regulation. Psychosomatic Medicine. Sep-Oct 1996;58(5):459-471. 

16.       Uchino BN, Cacioppo JT, Kiecolt-Glaser JK. The relationship between social support and physiological processes: a review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin. May 1996;119(3):488-531. 

17.       Park SM, Kim YJ, Kim S, et al. Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance. Supportive Care in Cancer. May 31 2009. 

18.       Cohen DS, Friedrich WN, Jaworski TM, Copeland D, Pendergrass T. Pediatric cancer: predicting sibling adjustment. Journal of  Clinical Psychology. May 1994;50(3):303-319. 

19.       Barrera M, Fleming CF, Khan FS. The role of emotional social support in the psychological adjustment of siblings of children with cancer. Child Care Health and Development. Mar 2004;30(2):103-111. 

20.       Barrera M, D'Agostino NM, Gibson J, Gilbert T, Weksberg R, Malkin D. Predictors and mediators of psychological adjustment in mothers of children newly diagnosed with cancer. Psychooncology. Sep 2004;13(9):630-641. 

21.       Landolt MA, Vollrath M, Ribi K, Gnehm HE, Sennhauser FH. Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. Journal of  Child Psychology and Psychiatry. Nov 2003;44(8):1199-1207. 

22.       Sloper P. Predictors of distress in parents of children with cancer: A prospective study. Journal of Pediatric Psychology. 2000;25:91. 

23.       Patino-Fernandez AM, Pai AL, Alderfer M, Hwang WT, Reilly A, Kazak AE. Acute stress in parents of children newly diagnosed with cancer. Pediatric Blood and Cancer. Feb 2008;50(2):289-292. 

24.       Best M, Streisand R, Catania L, Kazak AE. Parental distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends. Journal of Pediatric Psychology. Jul-Aug 2001;26(5):299-307. 

25.       Dahlquist LM, Czyzewski DI, Jones CL. Parents of children with cancer: a longitudinal study of emotional distress, coping style, and marital adjustment two and twenty months after diagnosis. Journal of  Pediatric Psychology. Aug 1996;21(4):541-554. 

26.       Manne S, DuHamel K, Ostroff J, et al. Anxiety, depressive, and posttraumatic stress disorders among mothers of pediatric survivors of hematopoietic stem cell transplantation. Pediatrics. Jun 2004;113(6):1700-1708. 

27.       Noll R, Garstein MA, Hawkins A, Vannatta K, W.H. D, Bukowski WM. Comparing parental distress for families with children who  have cancer and matched comparison families without children with cancer. Family Systems Medicine. 1995;13:11-28. 

28.       Gerhardt CA, Gutzwiller J, Huiet KA, Fischer S, Noll RB, Vannatta K. Parental adjustment to childhood cancer: A replication study. Families, Systems, and Health. 2007;25. 

29.       Clarke NE, McCarthy MC, Downie P, Ashley DM, Anderson VA. Gender differences in the psychosocial experience of parents of children with cancer: a review of the literature. Psychooncology. Sep 2009;18(9):907-915. 

30.       Brody AC, Simmons LA. Family resiliency during childhood cancer: the father's perspective. Journal of  Pediatric Oncology Nursing. May-Jun 2007;24(3):152-165. 

31.       Houtzager BA, Grootenhuis MA, Last BF. Adjustment of siblings to childhood cancer: a literature review. Support Care Cancer. Sep 1999;7(5):302-320. 

32.       Zeltzer LK, Dolgin MJ, Sahler OJ, et al. Sibling adaptation to childhood cancer collaborative study: health outcomes of siblings of children with cancer. Medical Pediatric Oncology. Aug 1996;27(2):98-107. 

33.       Alderfer MA, Long KA, Lown EA, et al. Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology. Oct 27 2009. 

34.       Brown SL, Nesse RM, Vinokur AD, Smith DM. Providing social support may be more beneficial than receiving it: results from a prospective study of mortality. Psychology Science quarterly. Jul 2003;14(4):320-327. 

35.       Van de Velde V, Demares I, De Vos P, et al. Weblogs of parents with a child treated for cancer: their intentions and experiences (abstract). Pediatric Blood & Cancer. 2010;55(5):810. 

36.       Dockerty JD, Skegg DC, Williams SM. Economic effects of childhood cancer on families. Journal of Paediatric and Child Health. May-Jun 2003;39(4):254-258. 

37.       Dussel V, Bona K, Heath J, Joanne M. Hilden J, Jane C. Weeks J, Joanne Wolfe J. Financial Burden, Work Disruptions, and Economic Coping Strategies Used by American and Australian Families Who Lost Children to Cancer Journal of Clinical Oncology. Jan 4, 2011, doi  2011. 

38.       Eiser C, Upton P. Costs of caring for a child with cancer: a questionnaire survey. Child Care Health and Development. Jul 2007;33(4):455-459. 

39.       Limburg H, Shaw AK, McBride ML. Impact of childhood cancer on parental employment and sources of income: a Canadian pilot study. Pediatric Blood and Cancer. Jul 2008;51(1):93-98. 

40.       Hassmen P, Koivula N, Uutela A. Physical exercise and psychological well-being: a population study in Finland. Preventive Medicine. Jan 2000;30(1):17-25. 

41.       Klassen AF, Klaassen R, Dix D, et al. Impact of caring for a child with cancer on parents' health-related quality of life. Journal of Clinical Oncology. Dec 20 2008;26(36):5884-5889. 

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