Skip to main content
Top
Gepubliceerd in: Journal of Child and Family Studies 6/2019

10-04-2019 | Original Paper

How Parents of Childhood Cancer Survivors Perceive Support From Their Extended Families

Auteurs: Lauren Kelada, Claire E. Wakefield, Lauren Carlson, Kate Hetherington, Brittany C. McGill, Maria C. McCarthy, Gordon Miles, Richard J. Cohn, Ursula M. Sansom-Daly

Gepubliceerd in: Journal of Child and Family Studies | Uitgave 6/2019

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Objectives

Childhood cancer has a profound impact on parents and family relationships. After their child’s diagnosis, parents commonly require support from their extended family members including their own parents and siblings. Limited research has assessed how parents draw upon their extended families for support after diagnosis. Importantly, support–or lack of support–offered by extended family members may change family relationships. We aimed to assess how parents, after their child’s diagnosis: perceive the support they received from their extended family; and describe changes to relationships with extended family members.

Methods

We interviewed 35 parents of childhood cancer survivors (n = 32 female, 91.4%). On average, children had successfully completed their cancer treatment 1.52 years (SD= 1.23 years) prior to their parents’ participation in our study (range = 0.17–6.33 years).

Results

Thematic analysis of the data revealed five themes: extended family members as sources of support; hurt, anger and resentment; empathy for extended family members; insulating the nuclear family; and relationships after treatment. Extended family members can provide valuable support to parents of a child with cancer. At the same time, families can be a source of anger and frustration for parents, potentially damaging relationships into the future.

Conclusions

Parents and their extended family members may have different ideas or expectations regarding the kind of support which is helpful during a child’s cancer treatment. Interventions and resources which educate extended family members may assist in bridging the gap between the support parents need, and what they receive, when their child is diagnosed with cancer.
Literatuur
go back to reference American Cancer Society (2015). Global cancer facts and figures. 3rd Edn. Atlanta, Georgia: American Cancer Society. American Cancer Society (2015). Global cancer facts and figures. 3rd Edn. Atlanta, Georgia: American Cancer Society.
go back to reference Björk, M., Wiebe, T., & Hallström, I. (2005). Striving to survive: families’ lived experiences when a child is diagnosed with cancer. Journal of Pediatric Oncology Nursing, 22(5), 265–275.CrossRefPubMed Björk, M., Wiebe, T., & Hallström, I. (2005). Striving to survive: families’ lived experiences when a child is diagnosed with cancer. Journal of Pediatric Oncology Nursing, 22(5), 265–275.CrossRefPubMed
go back to reference Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.CrossRef Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.CrossRef
go back to reference Brody, A. C., & Simmons, L. A. (2007). Family resiliency during childhood cancer: the father’s perspective. Journal of Pediatric Oncology Nursing, 24(3), 152–165.CrossRefPubMed Brody, A. C., & Simmons, L. A. (2007). Family resiliency during childhood cancer: the father’s perspective. Journal of Pediatric Oncology Nursing, 24(3), 152–165.CrossRefPubMed
go back to reference Charlebois, S., & Bouchard, L. (2007). “The worst experience”: the experience of grandparents who have a grandchild with cancer. Canadian Oncology Nursing Journal/Revue Canadienne De Soins Infirmiers En Oncologie, 17(1), 26–30.CrossRef Charlebois, S., & Bouchard, L. (2007). “The worst experience”: the experience of grandparents who have a grandchild with cancer. Canadian Oncology Nursing Journal/Revue Canadienne De Soins Infirmiers En Oncologie, 17(1), 26–30.CrossRef
go back to reference Chung, H., & Gale, J. (2009). Family functioning and self-differentiation: a cross-cultural examination. Contemporary Family Therapy, 31(1), 19–33.CrossRef Chung, H., & Gale, J. (2009). Family functioning and self-differentiation: a cross-cultural examination. Contemporary Family Therapy, 31(1), 19–33.CrossRef
go back to reference Clarke, N. E., McCarthy, M. C., Downie, P., Ashley, D. M., & Anderson, V. A. (2009). Gender differences in the psychosocial experience of parents of children with cancer: a review of the literature. Psycho‐Oncology, 18(9), 907–915.CrossRefPubMed Clarke, N. E., McCarthy, M. C., Downie, P., Ashley, D. M., & Anderson, V. A. (2009). Gender differences in the psychosocial experience of parents of children with cancer: a review of the literature. Psycho‐Oncology, 18(9), 907–915.CrossRefPubMed
go back to reference Da Silva, F. M., Jacob, E., & Nascimento, L. C. (2010). Impact of childhood cancer on parents’ relationships: an integrative review. Journal of Nursing Scholarship, 42(3), 250–261.CrossRefPubMed Da Silva, F. M., Jacob, E., & Nascimento, L. C. (2010). Impact of childhood cancer on parents’ relationships: an integrative review. Journal of Nursing Scholarship, 42(3), 250–261.CrossRefPubMed
go back to reference Derogatis, L. R. (1986). The psychosocial adjustment to illness scale (PAIS). Journal of Psychosomatic Research, 30(1), 77–91.CrossRefPubMed Derogatis, L. R. (1986). The psychosocial adjustment to illness scale (PAIS). Journal of Psychosomatic Research, 30(1), 77–91.CrossRefPubMed
go back to reference Epp, K. (2012). Burnout in critical care nurses: a literature review. Dynamics, 23(4), 25–31.PubMed Epp, K. (2012). Burnout in critical care nurses: a literature review. Dynamics, 23(4), 25–31.PubMed
go back to reference Georgas, J., Mylonas, K., Bafiti, T., Poortinga, Y. H., Christakopoulou, S., Kagitcibasi, C., & Orung, S. (2001). Functional relationships in the nuclear and extended family: a 16‐culture study. International Journal of Psychology, 36(5), 289–300.CrossRef Georgas, J., Mylonas, K., Bafiti, T., Poortinga, Y. H., Christakopoulou, S., Kagitcibasi, C., & Orung, S. (2001). Functional relationships in the nuclear and extended family: a 16‐culture study. International Journal of Psychology, 36(5), 289–300.CrossRef
go back to reference Gerhardt, C. A., Gutzwiller, J., Huiet, K. A., Fischer, S., Noll, R. B., & Vannatta, K. (2007). Parental adjustment to childhood cancer: a replication study. Families Systems and Health, 25(3), 263.CrossRef Gerhardt, C. A., Gutzwiller, J., Huiet, K. A., Fischer, S., Noll, R. B., & Vannatta, K. (2007). Parental adjustment to childhood cancer: a replication study. Families Systems and Health, 25(3), 263.CrossRef
go back to reference Gupta, N., & Kumar, S. (2015). Significant predictors for resilience among a sample of undergraduate students: acceptance, forgiveness and gratitude. Indian Journal of Health and Wellbeing, 6(2), 188. Gupta, N., & Kumar, S. (2015). Significant predictors for resilience among a sample of undergraduate students: acceptance, forgiveness and gratitude. Indian Journal of Health and Wellbeing, 6(2), 188.
go back to reference Kelada, L., Hasking, P., & Melvin, G. (2018). Adolescent NSSI and recovery: the role of family functioning and emotion regulation. Youth & Society, 50(8), 1056–1077.CrossRef Kelada, L., Hasking, P., & Melvin, G. (2018). Adolescent NSSI and recovery: the role of family functioning and emotion regulation. Youth & Society, 50(8), 1056–1077.CrossRef
go back to reference Lamb, M. E., & Sutton-Smith, B. (2014). Sibling relationships: their nature and significance across the lifespan. New York: Psychology Press. Lamb, M. E., & Sutton-Smith, B. (2014). Sibling relationships: their nature and significance across the lifespan. New York: Psychology Press.
go back to reference Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33(1), 159–174.CrossRefPubMed Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33(1), 159–174.CrossRefPubMed
go back to reference Long, K. A., & Marsland, A. L. (2011). Family adjustment to childhood cancer: a systematic review. Clinical Child and Family Psychology Review, 14(1), 57–88.CrossRefPubMed Long, K. A., & Marsland, A. L. (2011). Family adjustment to childhood cancer: a systematic review. Clinical Child and Family Psychology Review, 14(1), 57–88.CrossRefPubMed
go back to reference McCubbin, M., Balling, K., Possin, P., Frierdich, S., & Bryne, B. (2002). Family resiliency in childhood cancer. Family Relations, 51(2), 103–111.CrossRef McCubbin, M., Balling, K., Possin, P., Frierdich, S., & Bryne, B. (2002). Family resiliency in childhood cancer. Family Relations, 51(2), 103–111.CrossRef
go back to reference McCubbin, M., & McCubbin, H. (1993). Family coping with health crises: the resiliency model of family stress, adjustement and adaption. In C. Danielson, B. Hamel‐Bisell, & P. Winstead‐Fry (Eds.), Families, Health, and Illness (pp. 3–63). St. Louis: Mosby. McCubbin, M., & McCubbin, H. (1993). Family coping with health crises: the resiliency model of family stress, adjustement and adaption. In C. Danielson, B. Hamel‐Bisell, & P. Winstead‐Fry (Eds.), Families, Health, and Illness (pp. 3–63). St. Louis: Mosby.
go back to reference McCubbin, M., & McCubbin, H. (1996). Family coping with health crises: the resiliency model of family stress, adjustment and adaptation. In C. Danielson, Bhamel-Bissel & P. Winstead-Fry (Eds.), Families, Health and Illness (pp. 21-64). St. Louis: CV Mosby. McCubbin, M., & McCubbin, H. (1996). Family coping with health crises: the resiliency model of family stress, adjustment and adaptation. In C. Danielson, Bhamel-Bissel & P. Winstead-Fry (Eds.), Families, Health and Illness (pp. 21-64). St. Louis: CV Mosby.
go back to reference Merluzzi, T. V., & Martinez Sanchez, M. A. (1997). Factor structure of the Psychosocial Adjustment to Illness Scale (Self-Report) for persons with cancer. Psychological Assessment, 9(3), 269.CrossRef Merluzzi, T. V., & Martinez Sanchez, M. A. (1997). Factor structure of the Psychosocial Adjustment to Illness Scale (Self-Report) for persons with cancer. Psychological Assessment, 9(3), 269.CrossRef
go back to reference Morgan, T., Ann Williams, L., Trussardi, G., & Gott, M. (2016). Gender and family caregiving at the end-of-life in the context of old age: a systematic review. Palliative Medicine, 30(7), 616–624.CrossRefPubMed Morgan, T., Ann Williams, L., Trussardi, G., & Gott, M. (2016). Gender and family caregiving at the end-of-life in the context of old age: a systematic review. Palliative Medicine, 30(7), 616–624.CrossRefPubMed
go back to reference Morris, J. A., Blount, R. L., Cohen, L. C., Frank, N. C., Madan-Swain, A., & Brown, R. T. (1997). Family functioning and behavioral adjustment in children with leukemia and their healthy peers. Children’s Health Care, 26(2), 61–75.CrossRef Morris, J. A., Blount, R. L., Cohen, L. C., Frank, N. C., Madan-Swain, A., & Brown, R. T. (1997). Family functioning and behavioral adjustment in children with leukemia and their healthy peers. Children’s Health Care, 26(2), 61–75.CrossRef
go back to reference Moules, N. J., Estefan, A., McCaffrey, G., Tapp, D. M., & Strother, D. (2016). Differences and trading: examining the effects of childhood cancer on the parental subsystem—Part 1. Journal of Family Nursing, 22(4), 515–539.CrossRefPubMed Moules, N. J., Estefan, A., McCaffrey, G., Tapp, D. M., & Strother, D. (2016). Differences and trading: examining the effects of childhood cancer on the parental subsystem—Part 1. Journal of Family Nursing, 22(4), 515–539.CrossRefPubMed
go back to reference Moules, N. J., Laing, C. M., McCaffrey, G., Tapp, D. M., & Strother, D. (2012). Grandparents’ experiences of childhood cancer, part 1: Doubled and silenced. Journal of Pediatric Oncology Nursing, 29(3), 119–132.CrossRefPubMed Moules, N. J., Laing, C. M., McCaffrey, G., Tapp, D. M., & Strother, D. (2012). Grandparents’ experiences of childhood cancer, part 1: Doubled and silenced. Journal of Pediatric Oncology Nursing, 29(3), 119–132.CrossRefPubMed
go back to reference Moules, N. J., McCaffrey, G., Laing, C. M., Tapp, D. M., & Strother, D. (2012). Grandparents’ experiences of childhood cancer, part 2: The need for support. Journal of Pediatric Oncology Nursing, 29(3), 133–140.CrossRefPubMed Moules, N. J., McCaffrey, G., Laing, C. M., Tapp, D. M., & Strother, D. (2012). Grandparents’ experiences of childhood cancer, part 2: The need for support. Journal of Pediatric Oncology Nursing, 29(3), 133–140.CrossRefPubMed
go back to reference Olver, J. S., Pinney, M., Maruff, P., & Norman, T. R. (2015). Impairments of spatial working memory and attention following acute psychosocial stress. Stress and Health, 31(2), 115–123.CrossRefPubMed Olver, J. S., Pinney, M., Maruff, P., & Norman, T. R. (2015). Impairments of spatial working memory and attention following acute psychosocial stress. Stress and Health, 31(2), 115–123.CrossRefPubMed
go back to reference Patterson, J. M., Holm, K. E., & Gurney, J. G. (2004). The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors. Psycho‐Oncology, 13(6), 390–407.CrossRefPubMed Patterson, J. M., Holm, K. E., & Gurney, J. G. (2004). The impact of childhood cancer on the family: a qualitative analysis of strains, resources, and coping behaviors. Psycho‐Oncology, 13(6), 390–407.CrossRefPubMed
go back to reference Silva-Rodrigues, F. M., Pan, R., Sposito, A. M. P., de Andrade Alvarenga, W., & Nascimento, L. C. (2016). Childhood cancer: Impact on parents’ marital dynamics. European Journal of Oncology Nursing, 23, 34–42.CrossRefPubMed Silva-Rodrigues, F. M., Pan, R., Sposito, A. M. P., de Andrade Alvarenga, W., & Nascimento, L. C. (2016). Childhood cancer: Impact on parents’ marital dynamics. European Journal of Oncology Nursing, 23, 34–42.CrossRefPubMed
go back to reference Sloper, P. (2000). Experiences and support needs of siblings of children with cancer. Health and Social Care in the Community, 8(5), 298–306.CrossRefPubMed Sloper, P. (2000). Experiences and support needs of siblings of children with cancer. Health and Social Care in the Community, 8(5), 298–306.CrossRefPubMed
go back to reference Society, A. C. (2015). Global cancer facts and figures. 3rd Edition. Atlanta, Georgia: American Cancer Society. Society, A. C. (2015). Global cancer facts and figures. 3rd Edition. Atlanta, Georgia: American Cancer Society.
go back to reference Steliarova‐Foucher, E., Stiller, C., Lacour, B., & Kaatsch, P. (2005). International classification of childhood cancer. Cancer, 103(7), 1457–1467.CrossRefPubMed Steliarova‐Foucher, E., Stiller, C., Lacour, B., & Kaatsch, P. (2005). International classification of childhood cancer. Cancer, 103(7), 1457–1467.CrossRefPubMed
go back to reference Stiles, W. B. (1993). Quality control in qualitative research. Clinical Psychology Review, 13(6), 593–618.CrossRef Stiles, W. B. (1993). Quality control in qualitative research. Clinical Psychology Review, 13(6), 593–618.CrossRef
go back to reference Sultan, S., Leclair, T., Rondeau, E., Burns, W., & Abate, C. (2016). A systematic review on factors and consequences of parental distress as related to childhood cancer. European Journal of Cancer Care, 25(4), 616–637.CrossRefPubMed Sultan, S., Leclair, T., Rondeau, E., Burns, W., & Abate, C. (2016). A systematic review on factors and consequences of parental distress as related to childhood cancer. European Journal of Cancer Care, 25(4), 616–637.CrossRefPubMed
go back to reference Tougas, A.-M., Jutras, S., & Bigras, M. (2016). Types and influence of social support on school engagement of young survivors of leukemia. The Journal of School Nursing, 32(4), 281–293.CrossRefPubMed Tougas, A.-M., Jutras, S., & Bigras, M. (2016). Types and influence of social support on school engagement of young survivors of leukemia. The Journal of School Nursing, 32(4), 281–293.CrossRefPubMed
go back to reference Wakefield, C., Drew, D., Ellis, S. J., Doolan, E. L., McLoone, J. K., & Cohn, R. J. (2014). Grandparents of children with cancer: a controlled study of distress, support, and barriers to care. Psycho‐Oncology, 23(8), 855–861.CrossRefPubMed Wakefield, C., Drew, D., Ellis, S. J., Doolan, E. L., McLoone, J. K., & Cohn, R. J. (2014). Grandparents of children with cancer: a controlled study of distress, support, and barriers to care. Psycho‐Oncology, 23(8), 855–861.CrossRefPubMed
go back to reference Wakefield, C., Fardell, J. E., Doolan, E. L., Aaronson, N. K., Jacobsen, P. B., Cohn, R. J., & King, M. (2017). Participation in psychosocial oncology and quality-of-life research: a systematic review. The Lancet Oncology, 18(3), e153–e165.CrossRefPubMed Wakefield, C., Fardell, J. E., Doolan, E. L., Aaronson, N. K., Jacobsen, P. B., Cohn, R. J., & King, M. (2017). Participation in psychosocial oncology and quality-of-life research: a systematic review. The Lancet Oncology, 18(3), e153–e165.CrossRefPubMed
go back to reference Wakefield, C., Sansom-Daly, U. M., McGill, B. C., McCarthy, M., Girgis, A., Grootenhuis, M., & Lowe, C. (2015). Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. Trials, 16(1), 153.CrossRefPubMedPubMedCentral Wakefield, C., Sansom-Daly, U. M., McGill, B. C., McCarthy, M., Girgis, A., Grootenhuis, M., & Lowe, C. (2015). Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. Trials, 16(1), 153.CrossRefPubMedPubMedCentral
go back to reference Walęcka-Matyja, K. (2015). Relationships with siblings as a way of coping with stress in the early adult hood and the level of self-esteem. Polskie Forum Psychologiczne, 21(3), 341–363. Walęcka-Matyja, K. (2015). Relationships with siblings as a way of coping with stress in the early adult hood and the level of self-esteem. Polskie Forum Psychologiczne, 21(3), 341–363.
go back to reference Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatric Blood and Cancer, 62(S5), S419–S424.CrossRefPubMed Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatric Blood and Cancer, 62(S5), S419–S424.CrossRefPubMed
go back to reference Williams, P. D., Williams, K. A., & Williams, A. R. (2014). Parental caregiving of children with cancer and family impact, economic burden: nursing perspectives. Issues in Comprehensive Pediatric Nursing, 37(1), 39–60.CrossRefPubMed Williams, P. D., Williams, K. A., & Williams, A. R. (2014). Parental caregiving of children with cancer and family impact, economic burden: nursing perspectives. Issues in Comprehensive Pediatric Nursing, 37(1), 39–60.CrossRefPubMed
go back to reference Woodgate, R. L. (2006). Life is never the same: childhood cancer narratives. European Journal of Cancer Care, 15(1), 8–18.CrossRefPubMed Woodgate, R. L. (2006). Life is never the same: childhood cancer narratives. European Journal of Cancer Care, 15(1), 8–18.CrossRefPubMed
Metagegevens
Titel
How Parents of Childhood Cancer Survivors Perceive Support From Their Extended Families
Auteurs
Lauren Kelada
Claire E. Wakefield
Lauren Carlson
Kate Hetherington
Brittany C. McGill
Maria C. McCarthy
Gordon Miles
Richard J. Cohn
Ursula M. Sansom-Daly
Publicatiedatum
10-04-2019
Uitgeverij
Springer US
Gepubliceerd in
Journal of Child and Family Studies / Uitgave 6/2019
Print ISSN: 1062-1024
Elektronisch ISSN: 1573-2843
DOI
https://doi.org/10.1007/s10826-019-01394-9

Andere artikelen Uitgave 6/2019

Journal of Child and Family Studies 6/2019 Naar de uitgave