Table 2.
Characteristics of studies included in the systematic review.
| Study (in alphabetical order) | Aims | Participants (sample size) | Design and data collection | Date and duration | Setting and location | Data analysis methods |
|---|---|---|---|---|---|---|
| Amery18 | Map children’s palliative care around the world and survey respondents’ learning needs | Varied including healthcare professionals (251), students, managers, social workers, volunteers, academics, counsellors/psychologists, therapists (346) | Closed-question survey | 3-month period in 2010 | Online questionnaire, UK | Descriptive statistics |
| Amery and Lapwood19 | Identify and explore educational needs of children’s hospice doctors in England | UK children’s hospice doctors (35 for questionnaire, 17 for diary and interview) | Closed-question survey, diary and semi-structured interview | Not stated | Children’s hospices in the United Kingdom | Questionnaire and diary: not stated; interview: findings were discussed and crosschecked |
| Amery et al.20 | Research the children’s palliative care educational needs of healthcare professionals in Uganda | Healthcare professionals (48 for survey, 8 for survey interview and focus group) | Closed-question survey, logbook, semi-structured interview, focus group | Not stated | Hospices in Uganda, | Survey: descriptive statistics logbook, interview and focus group: thematic analysis |
| Bagatell et al.21 | Design, implement and evaluate a seminar series for paediatric residents | Paediatric residents (10 pre-test, 8 post-test) | Pre- and post-test closed-question survey | Not stated | University of Arizona, USA | Pre- and post-test comparison, descriptive statistics |
| Balkin et al.22 | Create and test a portable reference card to improve paediatric resident education | Year 1 and Year 2 paediatric residents (26) | Pre- and post-intervention closed-question survey | 6-month period in 2015 | The University of California San Francisco Benioff Children’s Hospital, USA | Pre- and post-test comparison, descriptive statistics |
| Baughcum et al.23 | Develop and evaluate a paediatric palliative care workshop for oncology fellows | Oncology fellows in a paediatric haematology/oncology fellowship programme (32) | Pre- and post- workshop closed-question survey | 1 day in November 2004 and May 2005 | Children’s Hospital in Columbus, Ohio and at the annual meeting of the American Society of Paediatric Hematology Oncology (ASPHO), Washington DC, USA | Pre- and post-test comparison, descriptive statistics |
| Bergstraesser et al.24 | Describe perceptions and needs of paediatric healthcare professionals | Paediatric healthcare professionals caring for children with palliative care needs (78) | Qualitative interview | September 2007–January 2008 and February–August 2009 | The participants’ work environments, Switzerland | Content analysis |
| Bogetz et al.25 | Examine healthcare professionals’ views on barriers to paediatric palliative care | Nurses and other paediatric specialists (275) | Online closed- and open-question survey | 2017 | Children’s hospitals within the University of California, San Francisco Health System, USA | Descriptive statistics and comparison with data from a previous study |
| Byrne et al.26 | Explore the role of parent self-efficacy related to pain management for seriously ill children and adolescents | Parents/caregivers (50) of children and adolescents expected to survive 3 years or less | Closed-question surveys | Not stated | At home or at a hospital/clinic in the USA | Descriptive statistics |
| Chen et al.27 | Evaluate the impact of training on paediatric healthcare professionals’ confidence and attitudes related to pain and symptom management for children with life-limiting or life-threatening conditions | Paediatricians and nurses who had completed a 5 hour training programme (71) | Pre- and post-training closed-question survey | Not stated | The Taichung Veterans General Hospital, Taichung City, Taiwan | Pre- and post-training comparison, descriptive statistics |
| Collins et al.28 | (1) Identify benefits and difficulties encountered by families during their child’s palliative care; (2) suggest strategies; (3) assess parents’ adjustment after their child’s death | Families (18) of children who had died receiving palliative care at home | Semi-structured interviews; closed-question survey | Not stated | Home, hospital or over the telephone, New South Wales, Australia | Not stated |
| Contro et al.29 | Obtain personal accounts of families’ experiences | Parents (68) of deceased children | Face-to-face interviews with closed- and open-questions | September 1998–March 1999 | Lucile Salter Packard Children’s Hospital (LSPCH), California, USA | Thematic analysis |
| Contro et al.30 | Conduct a staff survey on paediatric palliative care | Staff members from a children’s hospital (446) | Survey with closed-questions and 1 open-question | Not stated | Postal questionnaires, LSPCH, California, USA | Descriptive statistics and thematic analysis |
| Dangel et al.31 | (1) Measure the quality of a paediatric hospice home care programme; (2) assess parents’ needs and concerns | Parents/primary caregivers (80) of children who had died under the hospice home care | Open- and closed-question survey | Not stated | Postal questionnaire, the Warsaw Hospice for Children, Poland | Descriptive statistics |
| Davies et al.32 | Explore barriers to palliative care experienced by paediatric healthcare professionals caring for seriously ill children | Paediatric healthcare professionals (240) | Closed-question survey | January–March 2002 | Postal questionnaire, University of California, San Francisco (UCSF) Children’s Hospital, USA | Descriptive statistics |
| Dickens33 | Identify and evaluate factors associated with healthcare professionals’ confidence in delivering paediatric palliative care | Paediatric healthcare professionals with experience in paediatric palliative care (157) | Closed-question survey | 2-month period in 2005 | Emailed survey, Helen DeVos Children’s Hospital, Michigan, USA | Statistical analysis including descriptives |
| Ellis et al.34 | Describe pain management practices for children with cancer | Contact person at Canadian hospitals and clinics providing paediatric cancer treatment (26) | Closed-question survey | Not stated | Email/telephone questionnaire, Canada | Descriptive statistics |
| Fortney and Steward35 | Explore how nurses observe and manage infant symptoms at the end of life | Nurses (14) | Face-to-face exploratory qualitative interviews | Not stated | A children’s hospital in central Ohio, USA | A framework approach |
| Fowler et al.36 | Determine Children’s Oncology Group (COG) members’ comfort level in dealing with end-of-life care | Paediatric oncologist members of the COG in 2003 (623) | Closed-question survey | June 2003 | Online survey, USA | Statistics including descriptives |
| Friedrichsdorf et al.37 | Elicit parents’ perceptions of their children’s symptoms and symptom management strategies used during the last week of life | Parents of children who had died under the hospice programme | Semi-structured interview | 2004–2006 | Telephone interviews, The Barnes-Jewish Hospital Wings Paediatric Hospice Program, Missouri, USA | Categories and labels assigned to data (thematic analysis) |
| Gilmer et al.38 | Describe parental perceptions of the care of hospitalised, terminally ill children | Parents (15) of children who had died in a children’s hospital | Telephone interviews, closed- and open-question survey | Not stated | The Monroe Carell Jr Children’s Hospital, Nashville, USA | Descriptive statistics and qualitative content analysis |
| Grimley39 | Examine the knowledge, barriers and support needs of healthcare professionals providing paediatric palliative care | Healthcare professionals (225) | Survey with closed-questions and one open-question | October 2009–March 2010 | Online/paper survey, USA | Statistics including descriptives, content analysis |
| Groh et al.40 | Evaluate involvement of a specialised paediatric palliative healthcare team | Primary caregivers (40) of severely ill children | Pre- and post-intervention survey with closed- and open- questions | April 2011–June 2012 | Families’ homes, Germany | Statistics including descriptives |
| Hendricks-Ferguson41 | Identify symptoms of greatest parental concern and symptom management strategies at end of life | Parents (28) of children who had died under the hospice programme | Telephone interviews with open-ended questions | 2004–2006 | The Barnes-Jewish Hospital Wings Paediatric Hospice Program, Missouri, USA | Semantic content analysis |
| Hilden et al.42 | Assess attitudes, practices and challenges associated with end-of-life care of patients with cancer | Paediatric oncologist members of the American Society of Clinical Oncology (ASCO; 228) | Closed-question survey | Not stated | Postal survey to ASCO members in the United States, Canada and the United Kingdom | Statistics including descriptives |
| Houlahan et al.43 | Establish a standard of care to manage end-of-life symptoms | Inpatient oncology nurses and paediatric oncology fellows (24) | Closed-question survey | Not stated | Emailed survey, The Dana-Farber Cancer Institute/Children’s Hospital Cancer Care Program, Missouri, USA | Descriptive statistics |
| Klepping44 | Explore the case of a 16 year old with nasopharyngeal carcinoma | 16 year old with nasopharyngeal carcinoma approaching end of life (1) | Case study | Not stated | Hospice (location not stated) | Not stated |
| Kohler and Radford45 | (1) Find out how long children dying of cancer live for when they are taken home to die; (2) find out how these children die; (3) discover the problems faced by these families | Parents (19) of children dying of cancer | Semi-structured interview and a questionnaire (type not specified) | Not stated | Not stated | Not stated |
| Kolarik et al.46 | (1) Determine the extent of paediatric residents’ training, knowledge, experience, comfort and competence in paediatric palliative care; (2) learn about their views on palliative care and training | Paediatric residents (49) | Closed-question survey | September–December 2003 | The Children’s Hospital of Pittsburgh, Pennsylvania, USA | Statistics including descriptives |
| Lewis et al.47 | Explore the views of healthcare professionals on providing palliative and end-of-life care | Adult and paediatric nurses and doctors (32) | Focus groups, 1 semi-structured interview | Not stated | The Kilimanjaro Christian Medical Centre, Tanzania | Thematic analysis |
| Malcolm et al.48 | (1) Explore which rare life-limiting conditions in children present symptom challenges; (2) explore which symptoms are difficult to manage | Healthcare professionals (43), families (16) | Closed- and open-question survey | 3 weeks (not stated when) | Online questionnaire, UK | Thematic analysis |
| Mariyana et al.49 | Explore the experiences of mothers managing their children’s pain during palliative care | Mothers (8) of children with cancer receiving palliative care | Semi-structured face-to-face interview | Not stated | The Rachel House Foundation, West Jakarta and Taufan Jakarta Community, India | The Colaizzi method of analysis |
| Maynard and Lynn50 | Evaluate the effectiveness of delivering 24/7 children’s palliative care | Healthcare professionals (53), hospice professionals (60), families (26) | Closed- and open-question survey | Not stated | England (setting not stated) | Descriptive statistics, thematic analysis using a framework approach |
| McCabe et al.51 | Document the frequency and context of paediatric resident experiences with paediatric end-of-life care and their views on adequacy of training | Paediatric residents (40) | Closed-question survey | February–April 2006 | Emailed questionnaire, the Johns Hopkins Children’s Center, Maryland, USA | Statistics including descriptives |
| McCluggage and Elborn52 | Identify the symptoms that cause the most anxiety to healthcare professionals | Healthcare professionals working in UK children’s hospices (38) | Open- and closed-question survey | Not stated | Postal questionnaire, UK | Descriptive statistics |
| Meyer et al.53 | Examine perspectives and priorities of parents of children at end of life in the PICU | Parents of infants at end of life in the PICU (56) | The Parental Perspectives Questionnaire:53 closed- and open- questions | Not stated | Postal questionnaire, 3 paediatric intensive care units in Boston, USA | Descriptive statistics |
| Michelson et al.54 | Determine paediatric residents and fellows’ views, training, knowledge, experience, comfort and perceived competence in palliative care | Paediatric residents (52) and fellows (46) | Closed-question survey | Not stated | Emailed questionnaire, USA (study hospital not stated) | Statistics including descriptives |
| Monterosso et al.55 | Elicit parents’ and service providers’ views of supportive and palliative care | Service providers (n not stated) and families of children with life-threatening conditions (129) | Telephone or face-to-face survey with closed- questions (families), semi-structured interviews (families and service providers) | February 2003 and March 2005 | Western Australia (setting not stated) | Descriptive statistics and content analysis |
| Monterosso and Kristjanson56 | Determine (1) the palliative and supportive care needs of families whose children died from cancer; (2) how well these needs were met; (3) perceived barriers to service provision | Families (24) of children dying of cancer | Telephone or face-to-face semi-structured interviews, survey with closed- questions | February 2003 and March 2005 | Western Australia (setting not stated) | Descriptive statistics, thematic analysis, latent content analysis and constant comparison techniques |
| Monterosso et al.57 | Determine (1) the palliative and supportive care needs of families whose children died from cancer; (2) how well these needs were met; (3) perceived barriers to service provision | Families (69) of children who had died from cancer | Phone or face-to-face semi structured-interviews with open and closed questions | Not stated | Western Australia (setting not stated) | Statistics including descriptives |
| Naicker et al.58 | Describe the development of a palliative care package for the home care of young children | Home- and community-based care workers (28) | Photo-elicitation | Not stated | Rural areas in KwaZulu-Natal, South Africa | Thematic analysis |
| Peng et al.59 | Explore (1) neonatal nurses’ experiences of caring for dying neonates; (2) their palliative care education; (3) their educational needs | Neonatal nurses (115) | Closed-question survey | October 2011–July 2012 | 3 medical centres in the central area of Taiwan | Descriptive statistics |
| Price et al.60 | Examine healthcare professionals’ views on caring for children at end of life | Health and social care professionals (35) | Focus group interviews | November 2008–January 2009 | UK (setting not stated) | Thematic content analysis |
| Price61 | Explore bereaved parents’ experiences of providing children’s end-of-life care | Bereaved parents (25) | Face-to-face interview with open-ended questions | November 2007–September 2008 | Participants’ homes, UK | Thematic analysis followed by narrative analysis |
| Pritchard62 | Study the symptoms experienced by dying children that were of most concern to parents | Parents of children who had died from cancer (42) | Telephone interviews with open-ended questions, medical record reviews | Not stated | A paediatric cancer centre, USA | Statistics including descriptive statistics |
| Pritchard et al.63 | Identify (1) cancer-related symptoms that most concerned parents of children at end of life; (2) the care strategies that parents found helpful from healthcare professionals | Parents of children who had died from cancer (65) | Telephone interview, review of medical records | Not stated | A paediatric cancer centre, USA | Content analysis and consensus coding, descriptive statistics |
| Rapoport et al.64 | Examine the attitudes of palliative care physicians towards paediatric patients | Palliative care physicians (44) | Open- and closed-question survey | 4-month duration | The University of Toronto, Ontario, USA | Descriptive statistics, content analysis |
| Saad et al.65 | Evaluate the quality of paediatric palliative care as perceived by bereaved parents | Parents (29) of children who had died of cancer | Face-to-face interview with open- and closed- questions | September–December 2008 | Parents’ home, Lebanon | Descriptive statistics, analysis for open-ended questions not stated |
| Stein et al.66 | Assess the impact of chronic life-threatening illness on families and their perception of hospice care | Families (25) of children with chronic life-threatening illnesses | Face-to-face interview consisting of a semi-structured questionnaire and survey | Not stated | Oxfordshire, UK | Descriptive statistics; analysis of open- ended data not described |
| Szymczak et al.67 | Explore paediatric oncology providers’ views on the paediatric palliative care service | Paediatric oncology providers (16) | Semi-structured interviews with open-ended questions | Not stated | A place of the participants’ choosing the United States (state not stated) | Modified grounded theory approach |
| Tamannai et al.68 | (1) Gain a better understanding of the needs of Burkitt–Lymphoma patients and families in rural Cameroon; (2) assess their perception of the palliative care outreach programme; (3) identify issues | Children with Burkitt–Lymphoma (3), their caregivers (7) and nurses (2) | Semi-structured interviews with open-ended questions | Not stated | Interviews conducted during home visits in a rural area of Cameroon | Thematic analysis |
| Theunissen et al.69 | Examine symptoms in children with cancer and their parents during palliative care | Parents (59) of children with cancer receiving palliative care | Postal questionnaire with closed- questions, review of medical records | Not stated | The Radboud University Nijmegen Medical Centre (RUNMC), The Netherlands | Descriptive statistics |
| Thienprayoon et al.70 | Explore parental perspectives on the hospice experience | Parents (34) of children who had died of cancer | Qualitative interview with open-ended questions | Not stated | Interviews conducted at a location chosen by the parent, Children’s Medical Center Dallas, Texas, USA | Thematic content analysis |
| Ullrich et al.71 | (1) Describe fatigue as experienced by children with advanced cancer; (2) evaluate factors hypothesised to be associated with fatigue and its treatment | Parents (141) of children who had died of cancer | Telephone or face-to-face semi-structured survey – all closed- questions | 1997–2001 | The Dana-Farber Cancer Institute/Children’s Hospital Boston and the Children’s Hospitals and Clinics, St Paul and Minneapolis, USA | Statistics including descriptives |
| Van der Geest et al.72 | Explore the perspective of GPs caring for children with advanced cancer at home | GPs (91) | Open- and closed-written survey | 2013 | The Netherlands (setting not stated) | Statistics including descriptives |
| Verberne et al.73 | Provide an overview of parental caregiving | Parents (42) caring for children with life-limiting diseases | Interview with open- questions | August 2013–November 2015 | Interviews conducted at parents’ homes, Amsterdam, The Netherlands | Inductive thematic analysis |
| Vickers et al.74 | Gain understanding into parents’ experience of caring for a terminally ill child | Parents (10) of children who had died | Interview with open- questions | Not stated | Interviews conducted at parents’ homes, UK | Thematic content analysis |
| Vollenbroich et al.75 | Evaluate the perception of symptoms, treatment and their influence on palliative care as perceived by parents | Parents of children who had died due to a life-limiting disease (38) | Closed-question postal survey | June–December 2007 | The Coordination Center for Paediatric Palliative Care (CPPC) of the University of Munich, Germany | Statistics including descriptives |
| Vollenbroich et al.76 | Evaluate whether paediatric palliative home care can be improved with a paediatric palliative home care team | Parents (38) of children who had died, healthcare professionals involved in the children’s care (87) | Closed-question postal survey | June–December 2007 | The Coordination Center for Paediatric Palliative Care (CPPC) of the University of Munich, Germany | Statistics including descriptives |
| Wheeler77 | (1) Establish survey properties; (2) describe attitudes and practices of paediatric nurses regarding the care of infants and children with life-threatening conditions; (3) assess barriers to care; (4) examine differences in attitudes, practices and barriers | Paediatric nurses (343) | Closed-question survey | Not stated | A large children’s hospital, USA | Statistics including descriptives |
| Wolfe et al.78 | Determine (1) the patterns of care among children who die of cancer; (2) the symptoms, effectiveness of treatment and factors related to suffering from pain at end of life | Parents (103) of children who had died from cancer | Telephone or face-to-face interview with closed- questions, review of medical records | September 1997–1998 | Boston Children’s Hospital and the Dana-Farber Cancer Institute in Boston, USA | Statistics including descriptives |
| Yorke79 | Explore experiences of families whose child died in the paediatric intensive care unit (PICU) | Parents (23) of children who died in PICU | Semi-structured interview and closed-question survey | Not stated | PICU at the UNC Children’s Hospital, USA | Constant comparison content analysis |
| Zaal-Schuller et al.80 | Investigate (1) what parents and physicians consider important for quality of life in children with profound intellectual and multiple disabilities (PIMD); (2) how parents and physicians discuss and incorporate quality of life in end-of-life decision-making | Parents (17) of children with PIMD and physicians (11) | Semi-structured interviews with open-ended questions | Not stated | The Netherlands | Qualitative data analysis using coding |
| Zelcer et al.81 | Explore the end-of-life experience of children with brain tumours and their families | Parents (25) of deceased children with brain tumours | Focus group interview | Not stated | Interview conducted outside of hospital, the Children’s Hospital, London Health Sciences Center, Canada | Thematic analysis |