Table 1.

Caring Decisions: Responding to Parental Needs and Requests as Described in the Literature

Aspects parents comment on or consider	Key findings	Response in Caring Decisions resources to issues raised by parents
Written resources	Parents have indicated that written resources in the form of pamphlets or booklets help them retain information [28, 29].	Development of written information in the form of a small printed handbook with room for parents to make notes.
Sources of information	While parents rely heavily on healthcare professionals for accurate and relevant information, they also seek information from other sources including the internet [5, 8, 9, 11–17].	Development of detailed web-based resource, made freely available on the internet (as well as printable, downloadable version of shorter handbook).
Technical understanding	Parents' lack of scientific knowledge can lead them to later doubt the decisions they made for their child [30]. Parents' lack of understanding of medical issues reduces their willingness to make decisions for their child and prompts them to leave the decision-making to healthcare professionals [1, 31, 32].	Inclusion of easy-to-understand definitions of key terms (e.g. life support treatment, comfort treatment etc.) as well as clarification of key medical information (e.g. explanation of various kinds of life support treatments).
Inability to articulate questions	Not knowing what to ask caused parents to have access to less information vital for decision-making [33–35].	Inclusion of example questions/phrases that parents could ask or draw on when speaking to healthcare professionals.
Jargon	Parents in numerous studies indicate that medical jargon is confusing and overpowering. This impacts on parents' ability to properly assess the information required for them to make decisions [10, 34–38].	Simplified language (also examined by independent Plain Language Officer).
Amount of information	Many parents complained about the paucity of information provided. Parents felt that a lack of information impacted on their ability to make decisions. Some parents felt that they would have made different decisions if they had had access to more information [12, 34, 35, 39–41].	Web resource contains more detailed information, allowing parents to find additional information if required.
Delivery of information	Parents are very sensitive to the manner with which bad information is delivered and when they perceive doctors to be uncaring, it causes distress and distrust. Parents want information to be simple, honest, and delivered compassionately. Such information delivery reduces their fear, increases their sense of control, and aids in their decision-making [37, 42–45].	Resources discuss difficult issues sensitively, but also openly and honestly. Feedback from parents and parent support groups was sought.
Others' experiences	Parents have expressed the view that talking to other parents with similar experiences would have helped them cope better with their decisions, would have prepared them better for future events, or would have impacted on the decisions that they made [2, 46].	Parent narratives provide readers with insight and an understanding of the circumstances under which decisions were made, parents' considerations, difficulties, and ways of coping with their circumstances.
Support/development of a trusting relationship	Parents who felt supported, not judged, and whose situation was acknowledged as being difficult tended to trust healthcare professionals more and tended to be able to cope with the decisions they had made. Lack of support from healthcare professionals expressed in a range of ways, such as uncaring or disrespectful attitudes, caused distress in parents. Emotional distress is known to affect decision-making [2, 8, 13, 15, 37, 38, 42].	The text is fully supportive of parents and acknowledges their pain, distress, and emotional turmoil and in doing so shows them respect. The resources also encourage parents to talk to healthcare professionals and discuss their concerns, values, and thoughts.
Conflicting information and disagreement	Parents are disturbed by conflicting information from healthcare professionals and disagreement between parents and clinicians led to difficult relationships [8, 37, 38, 42, 43, 47, 48].	Includes section that explains how disagreements between healthcare professionals may come about. The section also discusses other areas of disagreement, i.e. parent/clinician disagreement, mother/father disagreement, parent/family disagreement. Some potential approaches to resolving disagreement are provided.
Uncertainty	Some parents are aware that there is sometimes uncertainty in prognoses and treatment. Parents want to know when healthcare professionals are faced with uncertainty and want to know when doctors have dilemmas [3, 44, 48, 49].	The resources discuss the uncertainty of some diagnoses and prognoses. Such understanding may prompt parents to ask about the level of clinicians' certainty and encourage an open discussion of their child's circumstances.
Involvement in decision-making	Extensive literature indicates that parents' preferences regarding involvement in decision-making vary widely on a scale of no involvement through to involvement in discussions but not decisions, shared decision-making, to full parental responsibility for decisions. Numerous studies indicate that some parents do not want to have full responsibility for the decisions they make. Reluctance to make decisions [1, 50, 51]; Involvement in discussions but not decisions [31, 45]; Shared decision-making [20, 30, 35, 42, 43, 52–56]; Parents' responsibility [4, 7, 30, 38, 57, 58]; Not full responsibility [31, 32, 42, 45, 51–53]	Includes section discussing the many stances parents adopt in decision-making. The section acknowledges the difficulty of the task and tries to empower parents by encouraging them to discuss their preferences with healthcare professionals. Sample questions and phrases appropriate for this topic are provided.
Quality of life	Parents considered it important to take into account their child's quality of life when making end-of life decisions. However, using such a criterion was very difficult for them [4, 59, 60].	The handbook provides a definition, a consideration of the importance of taking quality of life into account, and a parent quote. The web resource dedicates an extensive section covering many aspects relating to quality of life and includes questions parents can ask clinicians.