The experiences of mothers who have a child diagnosed with cancer

McEvoy, Bernie; Creaner, Mary

doi:10.1080/08870446.2021.1872791

Cited by 7 publications

(6 citation statements)

References 33 publications

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“…Supporting children who have continuing health needs to continue with their education is essential, to promote better education outcomes (Burns et al, 2021 ). Preserving normality in a child’s daily life, and maintaining their social development, significant in parenting an ill child (McEvoy & Creaner, 2021 ), were central to the key worker role.…”

Section: Discussionmentioning

confidence: 99%

Care coordination, consistency and continuity: the case of the key worker role in children’s cancer care

Martins

Aldiss

Taylor

2022

International Journal of Qualitative Studies on Health and Well

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Purpose The overall aim was to evaluate the key worker role across principal treatment centres for children with cancer in England, Wales and Scotland. Methods Mixed-methods case study gathering data from multiple perspectives using questionnaires, interviews, focus groups and reports/performance documents over a two-year period. Framework approach was adopted to analyse transcripts and documentary data. Results Participants included: 22 nurse specialist key workers, 103 parents, 85 professionals and 10 children/young people. Qualitative and quantitative data were woven together, to best illuminate key worker services. Four main models of care were described as well as the context of care and process of care. Key working effectiveness centred around three pillars: care coordination; expert knowledge, experience and expertise; relationship. These were essential to improved family experience, emotional wellbeing, and delivery of individualized care closer to home. Conclusions The role is complex and diverse, responding to local needs. Certain conditions, (e.g., high caseload) placed limits on enacting the three pillars, diminishing the positive experience of families. When they worked well, key workers reduced the fragmented nature of services and families placed great value on keeping the same key worker from diagnosis into long-term care. Retaining these roles, where already in place, or including, if not, we would recommend, factoring into budgets to sustain and expand such roles.

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Section: Discussionmentioning

confidence: 99%

Care coordination, consistency and continuity: the case of the key worker role in children’s cancer care

Martins

Aldiss

Taylor

2022

International Journal of Qualitative Studies on Health and Well

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“…Studies have demonstrated that mothers of children with cancer experience high levels of stress and anxiety while their child is in treatment (Alderfer et al, 2005; Klassen et al, 2008; Sulkers et al, 2014). Mothers also experience significant disruption to their self-value as ‘competent mothers’, and there is a need to put their own life on hold while caring for the child with cancer (McEvoy & Creaner, 2022). Cox (2016) contends that mothers of children with cancer need to develop a new way of living as cancer disrupts their sense of having a ‘normal’ life.…”

Section: Discussionmentioning

confidence: 99%

“…In addition to increased levels of stress and anxiety, mothers of children with cancer have been shown to have a poor QoL (Clarke et al, 2009). Studies have also shown that taking care of a child with a serious illness affects a mother’s ability to care for her physical health, which includes her sleep and nutrition (Eyigor et al, 2011; McEvoy & Creaner, 2022).…”

Section: Introductionmentioning

confidence: 99%

“…Research has also shown that mothers often experience significant disruption in their lives after a child's cancer diagnosis (McEvoy & Creaner, 2022). Bury (1982) articulates this as the theory of biographical disruption, arguing that a diagnosis of serious illness (or that of a loved one) disturbs the narrative individuals hold regarding their future life and their self-identity.…”

Section: Introductionmentioning

confidence: 99%

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‘Torn in two’: Experiences of Mothers Who Are Pregnant when Their Child Is Diagnosed With Cancer

et al. 2022

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Mothers of children diagnosed with cancer have been shown to experience high rates of psychological distress and poor physical health. Pregnancy further increases the healthcare needs of mothers due to the marked physiological changes and psychological adaptations. Our study aimed to explore the experiences of mothers who were pregnant and/or had a baby while their older child was receiving treatment for cancer. Our study employed a qualitative description methodology using semi-structured interviews. Participants were recruited from across Australia via notices on social media sites and the distribution of flyers. The sample comprised 13 mothers who were pregnant and/or had a baby and had a child diagnosed with cancer who was under 17 years old. Thematic analysis was used to analyse the data from which six themes were identified: (1) an impossible balancing act, (2) mother’s health and well-being, (3) creating certainty: birthing plans, (4) a bit of sunshine and a time to rest, (5) challenges of caring for the baby and (6) an unenviable position: doing my best versus feeling guilty. Our study demonstrates the additional challenges faced by mothers who are pregnant while their child is receiving cancer treatment. There is a need for a comprehensive and coordinated program that provides pregnant mothers with practical and psychological support. The implementation of such a program has the potential to improve health outcomes for all family members, particularly the mother and their newborn.

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“…The key terms were coded, and primary codes were grouped into the concepts. Measuring discrepancy between the current condition and wanted condition appropriately identi ed the family caregivers' paramount needs; based on the extracted concepts, the topic for each training session was outlined [27][28][29][30]. The speci c requirements that were identi ed in this population of family caregivers during the preliminary phase of needs assessment and then addressed in the subsequent step are according to Table 1.…”

Section: The Rst Step: the Preliminary Phase Of Needs Assessmentmentioning

confidence: 99%

Effectiveness of a Need-Based Program in Relieving Psychological Distress of Family Caregivers of Leukemia Patients: A Randomized Clinical Trial

Abdullahzadeh

Khosravi

2021

Preprint

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PurposeThe family of leukemia patients, due to their caring role, often feel psychological distress. This paper describes the efficacy of a designed family-need-based program on relieving depression, anxiety, and stress of family caregivers of leukemia patients by meeting the specific psychological needs of caregivers.MethodsIn this clinical trial, 64 family caregivers of leukemia patients referring to a medical center in Iran were recruited by convenience sampling and divided into study and control groups randomly. The study group attended a designed need-based program. The control group did not receive the intervention. Stress, anxiety, and depression before, right after, and one month after the intervention in family caregivers were compared using DASS-42. Data were analyzed using descriptive and inferential statistics; the significance level adopted was 5%.ResultsBefore the intervention, the mean score of depression, anxiety, and stress scale in both study and control groups showed no considerable difference (P > 0.05). After the intervention, the mean score of DASS-42 revealed a significant difference between the two groups and the study group did better on outcomes (P < 0.001).ConclusionThis family-need-based program can decrease the level of stress, anxiety, and depression of the family caregivers of leukemia patients and may potentially alleviate the psychological distress of family caregivers over their caring role.Trial registration number: IRCT2013093011895N2. Date of registration: 2014-05-06

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The experiences of mothers who have a child diagnosed with cancer

Cited by 7 publications

References 33 publications

Care coordination, consistency and continuity: the case of the key worker role in children’s cancer care

Care coordination, consistency and continuity: the case of the key worker role in children’s cancer care

‘Torn in two’: Experiences of Mothers Who Are Pregnant when Their Child Is Diagnosed With Cancer

Effectiveness of a Need-Based Program in Relieving Psychological Distress of Family Caregivers of Leukemia Patients: A Randomized Clinical Trial

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