Table 5 Scoping review articles included in this review
First Author, Publication year | Title of Study | Journal | Country of Origin | Research Methods | Study Design | Sample Size | No of Mothers | No of Fathers | Study Aim | Authors Main Findings |
|---|---|---|---|---|---|---|---|---|---|---|
Hinds, P.S. et al. (1996) [32] | Coming to Terms: Parents’ Response to a First Cancer Recurrence in their child | Nursing Research | USA | Semi-structured interviews, observations | Qualitative | 33 | 27 | 5 | Identify and describe the coping processes (meaning the behaviours and thoughts) used by parents of pediatric oncology patients to deal with stress of a first cancer recurrence in their child | “Coming to terms”: meant adapting to the situation, managing emotional reactions, making rational decisions in the hope for a cure whilst recognising their child may die. Concerns about treatment impacting on employment, finances, and family life. Fear of their child dying, hence fighting for a cure, searching for outcomes, consideration of child’s wishes, faith, and religion |
Hinds, P.S. et al. (1997) [8] | Decision Making by Parents and Healthcare Professionals when Considering Continued Care for Pediatric Patients with Cancer | Oncology Nursing Forum | USA | Semi-structured interviews, questionnaires | Retrospective-descriptive design | 39 | Not stated | Not stated | To better define the treatment related decisions considered most difficult by parents of paediatric patients with cancer and the factors that influence their final decisions | Uncertainty of treatment side effects, ongoing communication from healthcare professionals on disease and treatment was vital, importance of trust and reassurance in healthcare professionals, consideration of their child’s wishes, repeated treatment decisions led to the conclusion that their child would not get better |
Hinds, P.S. et al. (2000) [33] | An International Feasibility Study of Parental Decision Making in Pediatric Oncology | Oncology Nursing Forum | USA | Open-ended interviews | Qualitative Exploratory descriptive cross-sectional design | 43 | 38 | 5 | To describe parental decision making about treatment options for children with cancer and determine the feasibility of a similar but larger international study | Continuing with treatment was seen as doing everything possible to save child’s life, parents were satisfied if decisions made had a positive outcome, ongoing communication from healthcare professionals on disease and treatment was vital, consideration of child’s wishes, faith, and religion |
Bluebond-Langner, M. et al. (2007) [35] | Understanding Parents’ Approaches to Care and Treatment of Children with Cancer when Standard Therapy has Failed | Journal of Clinical Oncology | USA | Semi-structured interviews, observation | Qualitative Prospective Ethnographic study | 34 | Not stated | Not stated | To examine US and UK parents’ approaches to care and treatment when standard therapy has failed and consider implications for clinical practice | Hope was leaving “no stone unturned”, seeking other treatment options, allowing time for treatments to work, for treatments to become available and more time with their child. Pursuing treatments whilst caring, protecting, and advocating for their child to prolong life, decrease suffering and keep all treatment options open |
De Graves (2008) [38] | Lving with Hope and Fear – The Uncertainty of Childhood Cancer after Relapse | Cancer Nursing | Australia | In-depth interviews and field notes (case studies) | Qualitative Prospective Critical Ethnography | 17 | 12 | 5 | To develop an understanding of human actions and emotions that shape the experience of relapse, to question what influences the care provided at relapse, and to challenge current practice | Maintaining hope, pursuing treatments despite potential harm or suffering, exploring alternative therapies to reduce the fear of their child dying |
Mack et al. (2008) [36] | Parents’ Views of Cancer-Directed Therapy for Children with No Realistic Chance of Cure | Journal of Clinical Oncology | USA | Close-ended questionnaires, vignettes | Quantitative | 141 | 117 | 24 | Assess parents’ experiences with treatment for their child with cancer and no realistic chance of cure | Hope for a cure, prolonging life and decreasing suffering |
Hinds et al. (2009) [34] | “Trying to be a Good Parent” As defined by Interviews with Parents who made Phase I, Terminal Care and Resuscitation Decisions for their Child | Journal of Clinical Oncology | USA | Interviews | Qualitative Descriptive study | 62 | 91.4% | 44.8% | To define what it means to be a good parent to a child with incurable cancer | Ongoing communication from healthcare professionals on disease and treatment, being a “good parent” included making informed decisions in the best interests of their child |
Maurer et al. (2010) [37] | Decision Making by Parents of children with Incurable Cancer who opt for enrolment on a Phase I trial compared with Choosing a Do Not Resuscitate/Terminal Care option | Journal of Clinical Oncology | USA | Interviews | Qualitative (secondary analysis) | 62 | 53 | 9 | To compare the self-reported rationale, good parent definition, and desired clinical staff behaviours of parents who recently decided for phase 1 (P1) chemotherapy with parents who chose do not resuscitate (DNR) or terminal care (TC) option | Importance of trust and reassurance in healthcare professionals, managing positive relationships with healthcare professionals, making informed decisions which were “evidence-based”, in the best interests of their child was seen as “doing the right thing” |
Tomlinson et al. (2011a) [40] | Concordance between couples Reporting their Child’s Quality of Life and their Decision Making in Pediatric Oncology Palliative Care | Journal of Pediatric Oncology Nursing | Canada | Hypothetical scenarios interview, format | Quantitative Cross-sectional study | 26 | 13 | 13 | To (1) describe concordance between fathers' and mothers' evaluation of QoL and (2) determine correlation between mother and father for how factors such as hope, anticipated QoL, and prolonged survival time influence the decision between supportive care alone versus aggressive chemotherapy | Maintaining hope outweighed their child’s quality of life and suffering, opinions of family members, other parents and healthcare professionals was influential, treatment provided more time with their child |
Tomlinson et al. (2011b) [16] | Chemotherapy versus supportive Care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals | Canadian Medical Association Journal | Canada | Hypothetical interviews (prepared scripts, visual aids) | Quantitative | 77 | 60 | 17 | The goal of this study was to compare the strength of preference between parents and healthcare professionals for supportive care alone versus palliative chemotherapy for children whose cancer has no reasonable chance of being cured, and to determine how specific factors affect these preferences | The importance of hope outweighed their child’s quality of life and suffering, opinions of family members, other parents and healthcare professionals was influential, treatment provided more time with their child |
Parents’ thoughts and perceptions on hearing that their child has incurable cancer | Journal of Palliative Medicine | Japan | Semi-structured open-ended interviews | Qualitative | 23 | 16 | 7 | To describe parental thoughts and perceptions when they hear that their child has incurable cancer | Continuing treatment was to not give up on their child, recognising death was not a potential reality with the focus on not allowing their child to die. This outweighed their child’s quality of life and suffering whilst acknowledging their child’s struggle to tolerate treatments | |
Mack et al. (2019) [17] | Unrealistic Parental Expectations for Cure in Poor-Prognosis Childhood Cancer | Cancer | USA | Questionnaires | Quantitative Prospective cohort study | 95 | 81% | 19% | The goal of the current study was to identify communication and care experiences that drive parents' care goals and decisions | Focus was to cure their child, allowing time for treatments to work and for treatments to become available |