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Abstract
Objectives Parents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our objective was to understand parents’ experience of advance care planning for their child.
Methods Data collected through semistructured interviews and documents using a constructivist and situational grounded theory approach. Parents with experience of end-of-life decisions or advance care planning for a child (age 0–17 years) with a life-limiting condition or life-threatening condition.
Results 13 parents participated; 11 interviews were undertaken with analysis of 9 advance care plans. Parents were interviewed separately (n=9) or together (n=2).
Overarching and inter-related categories, realisation, reconciling multiple tensions and building confidence and asserting control explained the actions and processes of parents’ experience of advance care planning. The arising theory, reconstructing meaning through advance care planning, describes how the process of advance care planning, enables parents to make ‘good’ decisions in complex medical situations and despite the emotional distress, has therapeutic value.
Conclusion This study confirms parents want to engage in advance care planning, use the process to continuously reorientate their values alongside treatment decisions and that offers a therapeutic value not previously recognised. This requires healthcare professionals to reframe their approach to advance care planning conversations valuing parents’ voices and desire for a sense of control and empowering them to make future decisions that offer hope and build resilience to face the future death of their child.
- End of life care
- Paediatrics
- Terminal care
Data availability statement
Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information. Relevant data from the study are included in the article and presented in tables 2 and 3 with supporting quotes. Coding index and categorisation data are available from the first author.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Parents want to participate in advance care planning for their child and want this process to take account of their day-to-day life, their family values, hopes and goals.
Parents want timely, ongoing conversations with clinicians which explore the meaning of potential care and treatment interventions so they can weigh up the implications for their child.
Studies to date have adopted a cross-sectional approach to understanding parents’ experience of advance care planning for their child. Studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.
WHAT THIS STUDY ADDS
First grounded theory study of parents’ experience of the process of advance care planning for children with life-limiting or life-threatening conditions, constructed from parent interviews and written advance care plans.
The grounded theory proposes advance care planning is best understood as a parental process of reconstructing meaning of their child’s illness, consisting of reassessing understanding of their child’s illness, evaluating potential care and treatment options and engaging in end-of-life decisions.
Parents purposefully use advance care planning to navigate the complexity of care and treatment decision-making and manage uncertainty.
Both the process of engaging in advance care planning conversations and constructing a written advance care plan contribute to the process of meaning reconstruction. Advance care planning conversations can enable parents to discuss difficult issues together, acknowledge difference and find points of agreement.
Advance care plans provide an important vehicle through which parents voice their knowledge of their child and exercise their parental role. Combined, these processes have the therapeutic benefit of ensuring end-of-life care is congruent with the child’s life and family values.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Healthcare professionals need to significantly change the approach to advance care planning, from a record of decisions about do-not-resuscitate and treatment options, to a continuous, relational conversation about choices of care.
Advance care planning should involve a series of conversations that start early in a child’s illness.
Parents should be supported to explore values and goals for themselves and their family.
Further research is needed to understand how parents cope with the tensions and contradictions of advance care planning and how advance care planning impacts on decisions at time of death and in bereavement.
Further research is needed to understand the child’s experience of advance care planning and how cultural and socioeconomic influence parental decision-making.
Introduction
Parents of children with life-limiting condition (LLC) and life-threatening condition (LTC) make decisions about care and treatment for their child on a daily basis, amidst ongoing changes in their condition.1 Situations such as diagnosis, crisis episodes of care, exacerbation and deterioration, and hospitalisation can trigger decisions about the appropriateness of current and future care and treatment,2 and for parents, this can be overwhelming. Advance care planning is therefore considered an important means of supporting parents to engage in such decisions and participate in decision-making.2
Our recent scoping review demonstrated parents are supportive of the process of advance care planning, although difficult and often distressing, and wish to make the ‘right’ decisions.1 Advance care planning is meaningful to parents when their role in decision-making is respected and when their family values, fears and wishes are considered.3 Parents comprehend the need to plan in advance. They draw on previous experiences of their child’s condition and health, and the impact of illness on the family, to balance decisions which enhance their child’s quality of life without causing undue suffering. Thus, for parents, advance care planning is contextualised by their family and the motivation to keep everything as normal as possible to maintain family coherence.1 Family resources are influential in parents’ advance care planning and much of their thinking about future care and treatment takes place outside of the clinical context.4
However, while research has investigated parents’ attitudes and perceptions of2 5–8 and approaches to advance care planning,4 9 little is known about how parents experience and manage this process. Understanding parents’ experience could strengthen coherence between healthcare professionals and parental perceptions of advance care planning, and subsequently enhance the quality, acceptability and sensitivity of advance care planning conversations. In addition, such knowledge would help realise the coaching potential of these conversations providing parents with knowledge of possible interventions and the ‘know-how’ to care for their child as they deteriorate.10
Aims
Our aim was to understand parents’ experience of advance care planning for their child.
Advance care planning
Advance care planning is described in both policy11 and professional guidance12 as a process of discussion with published definitions sharing common principles such as, person-centred approach and shared decision-making. In children’s palliative care, contextual issues such as modifications to resuscitation and limitations to life-sustaining treatments,13 make advance care planning complex, and shifts the focus of advance care planning to understanding parents’ choices for care of their child4 rather than making definitive decisions in advance.
Method
Advance care planning is co-constructed from conversations between professionals and parents. Thus, a grounded theory design was appropriate to describe parents’ experience of advance care planning for their child and associated social psychological processes.14 Specifically, we followed a constructivist and situational approach to grounded theory described by Charmaz14 and Clarke.15
Conducting research in children’s palliative care is ethically challenging.16 A process approach was adopted to manage identified considerations (figure 1). The approach was informed by public and patient involvement (PPI) in the design and governance of the study. Our standpoint was that knowledge generated of advance care planning was co-constructed between parents and researchers through the researcher–participant relationship and interpretation of data. To ensure the study was inclusive of parental experience the study included bereaved parents as well as parents caring for children with life-limiting and life-threatening illness.
Ethical considerations of the study.
Public and patient involvement
The PPI group comprised four parents, two currently caring for a child with an LLC and two whose child had died. The PPI group was supported by the primary researcher (HEB). The group were involved in conception of the study, study design, ethical approval application preparation and preparation for data collection. Throughout, the purpose of PPI engagement was to ensure the design and direction of the study was congruent with their experience. Revisions were made to the design and conduct of the study where this differed. Their involvement was influential in construction of participation information sheets, interview questions and the consent process. They advised on the sampling strategy and one of the parents participated in a pilot interview and provided feedback which was integrated in field work interviews.
Research sample, participant recruitment and access
Participants were parents with a child (age 0–17 years), either living or who had died, with an LLC or LTC, who had or were involved in end-of-life or advance care planning conversations for their child and may have completed a written advance care plan (see box 1). Parents were recruited from the caseload of two regional children’s community nursing (CCN) teams in South England.
Inclusion and exclusion criteria
Inclusion
Parents identified from regional CCN team caseload.
Parents (mothers and fathers) currently caring for a child aged 0–17 years with an LLC or LTC (conditions for which there is no reasonable hope of cure or which curative treatment may be feasible but can fail).12
Bereaved parents of a child aged 0–17 years who died as a consequence of an LLC or LTC (bereaved parents still known to the CCN team within 4 years of their child’s death).
Exclusion
English speaking (no funds were available for an interpreter for non-English speakers).
Parents receiving services from the primary researcher’s (HEB) clinical setting.
CCN, children’s community nursing; LLC, life-limiting condition; LTC, life-threatening condition.
Potential participants were identified by the CCN at their weekly team meeting and sent an invitation and participant information sheet by the CCN. Parents who expressed an interest in the study were contacted by the primary researcher (HEB) to explain more about the study and interview process.
Consent process
Consent to participate in the study was gained at the beginning of the interview meeting. Consent was obtained for the interview, recording, transcribing, access to their child’s advance care plan and use of resulting data for the study and study reports. Because the study was concerned with parents’ experience of advance care planning for their child, parents were asked, where appropriate, to discuss their participation in the study with their child and gain their assent. Parents chose whether their child’s real name or a pseudonym was used, following the recommendation by Gringer17 to recognise authorship and ownership of parents’ stories in research.
Data collection
Data were collected between April 2015 and March 2017 via semistructured interviews with parents and the child’s advance care plan. All interviews were conducted in the parents’ homes by the primary researcher (HEB). Interviews took the approach of a guided conversation18 initiated with the question ‘can you describe your experience of making care decisions for your child and advance care planning’. Further questions were used to prompt conversation if needed. Interviews were digitally recorded.
A copy of advance care plans were accessed from the CCN following the interview, where consent was obtained.
Field notes were written immediately after each interview to capture observational and methodological aspects of the research.19 Field notes included memos and diagramming20 to capture analytical insights generated through data collection.
Data analysis
A constant comparative approach20 of progressive analysis was conducted across the data sets (figure 2). Thus, analysis moved from initial and focused coding to generate concepts and their properties and subsequent categories. In the next phase of analysis, theoretical development, connections, relationships, variations and differences between categories and their constituent codes were examined, to identify a core category and basic social process.21
An illustration of the analytical process of the study.
Initial and focused coding
Interviews were transcribed verbatim and analysed via Atlas ti (a computer-assisted software program) to generate initial codes and concepts and their properties.
Advance care plans were analysed using Clarke’s situational maps15 to identify social and power constructs and the parental voice represented within the documents.
Theoretical development
The concepts and properties identified by initial and focused coding were interrogated using situational maps15 and, memos and diagramming20 to identify and explain connections and relationships across and within the data sets. Specifically, analysis sought to interpret and represent the discourse, structure and conditions associated with advance care planning and situation of inquiry.15
Theoretical sampling enabled a purposeful generation of data by refining the interview schedule to more focused questions.
Reflexivity was central to the research process and construction of the grounded theory. Field notes, kept throughout the research, were key to this process, and were guided by criteria generated by Charmaz, to evaluate the rigour of theory construction.14
‘Theoretical sufficiency’22 was established by constantly mapping codes against the developing categories, and reviewing each code and category for fit and adequacy against the data, until data were sufficiently explained by the categories and core category.
Results
Thirteen parents (mothers: n=9; fathers: n=4) of 10 children expressed an interest in the study. All were interviewed once. A total of 11 interviews were conducted; parents chose to be interviewed separately (n=9) or together (n=4). Three were bereaved parents. Nine advance care plans were analysed. Participant demographics are detailed in table 1. Parents’ experience of advance care planning for a child with an LLC or LTC is explained by the grounded theory reconstructing meaning through advance care planning. (figure 3) The theory consists of a core category and basic social process, reconstructing meaning, and three constituent and interwoven categories, realisation, reconciling multiple tensions, and building confidence and asserting control (table 2).
Sample demographics of participants and their child
Diagram of the theory: reconstructing meaning through advance care planning.
Categories, their concepts and properties
Reconstructing meaning through advance care planning
Core category and single basic process: reconstructing meaning
Parents’ experience of advance care planning was not solely confined to end-of-life care and treatment decisions, but also included value-based decisions which guided adjustment to a changing reality provoked by their child’s deteriorating condition. Consequently, advance care planning challenged parents’ previously held assumptions, values and beliefs, their parental self-concept and sense of family. Reconstructing meaning encapsulates the actions and processes adopted by parents to purposefully meet these challenges, in the presence of loss and grief. Reconstructing meaning describes a cyclical process in which parents moved between, through and around realisation, reconciling multiple tensions, and building confidence and asserting control. Thus, reconstructing meaning was not a singular event, parents encountered multiple reconstructions of meaning, depending on the nature and trajectory of their child’s illness, their family life and encounters with advance care planning.
Realisation
Realisation their child’s condition was deteriorating was prompted by triggers including increased severity of symptoms, treatment escalation, increased admission frequency and length of stay, referral to palliative care, as well as differences in interactions with health professionals. Advance care planning was associated with ‘questions no one wants to hear’ (6), by decisions which were ‘momentous…huge’ (13) and intense emotions of grief and sorrow. Therefore, parents experienced advance care planning as distinctively different to previous conversations with clinicians about their child’s diagnosis, treatment and prognosis.
Initially parents felt overwhelmed:
… everyone’s telling you what to do, what not to do and it’s a minefield of information and you don’t, can’t process it …you’re like hang on a minute, back up, back up. Hang on, I need to process this (2).
Parents initially coped by ‘sticking my head in the sand’ (5), procrastinating, and focusing on specific treatment details, to give themselves time to process the change in their child’s condition. However, although difficult, they wanted to be involved in advance care planning. While some suggested easing the difficulty by introducing advance care planning earlier in illness, many were helped by the support provided by respectful and compassionate clinicians through ‘gentle…prods’ (8) to encourage discussion, and opportunities to consider, reflect and process information over time.
I suppose somebody pushed the conversation and took ownership and managed it and encouraged us to do it (5)
Conversely, some parents found healthcare professionals reluctant to initiate advance care planning or discuss prognosis and treatment options.
surely someone should have said to us this is the beginning of the end, but nobody said that, they just skirt around the issue (13)
Reconciling multiple tensions
Parents wanted to make ‘right’ and ‘good’ decisions for their child’, and experienced tension between wanting to sustain their child’s life yet not prolong suffering or compromise quality of life.
it wouldn’t be fair to put her through that again… we had seen her go through so much discomfort and pain(12)
Advance care planning conversations were therefore important opportunities to both gather and check-out information about potential care and treatment, funeral care and organ donation.
it’s a huge responsibility and I felt all the way through that you are completely responsible for making decisions for a child who can’t voice their preferences… you really are reliant on the medical experts to give you the information. (13)
However, parents’ confidence to make ‘right’ and ‘good’ decisions for their child was exacerbated by the enormity of the decisions required and the knowledge that whatever decisions they made, their child would, at some point, die and they had little control in how this might happen:
We felt we had no control, and the worst was going to happen somewhere. (7)
Factors such as medical jargon, medical hierarchy and implicit rules of medical decision-making and decision-sharing, compounded parents’ feelings of disempowerment. Parents gave examples where their choices were scrutinised and criticised, their role side-lined, their knowledge of their child considered superfluous, and when they lacked information to fully participate or were excluded in decision-making. Parents also felt patronised and devalued: ‘It’s like someone thinks I’m a crazy person.’ (3), ‘they see me as the mess’ (1), ‘He patted her head and said I’ve seen children like this before’ (13).
Combined, such experiences influenced subsequent advance care planning conversations. For example, Catherine’s mother explained how an antagonistic conversation ‘swayed any decision I had to make for many months after’ (13).
Building confidence and asserting control
In strong contrast to parents’ experiences of advance care planning conversations, the completed written plan was considered liberating and empowering. Parents used the plan to impart knowledge of their child and their family values and wishes. Consequently, advance care plans were vehicles through which parents expressed their voice and their parental role: self-preservation’ (9): ‘It was totally the right decision…if we had said no we would have regretted for ever and ever…I couldn’t have lived with that if we’d made the wrong decision.’ (14)
We felt we needed to have our wishes documented… we are just not going to be dictated to, don’t ask us again just do it. (13).
Thus, advance care plans were a means to ‘be a good parent’ by ‘doing the right thing at the right time for the right reason’ (8), values by which parents judged their care and treatment decisions and which were intrinsically linked with their hopes and goals.
Parents often justified their decisions using heuristics, such as: ‘enough is enough’, (4) ‘I do not want my child to suffer’, ‘where there’s hope’ (3).
Most parents experienced periods of stability, during which their child’s condition ‘plateaued’, followed by periods of crisis during which recovery was unpredictable but, in many cases where their child, against all odds, ‘bounced back’, maybe not to their previous health but to a new plateau of stability.
He’s kind of stable and then drops a bit and then he’s kind of dropping again so we need to rethink. (2)
The cycle of stability and crisis increased parents’ knowledge and participation in the process of advance care planning. One parent explained previous discussions informed future decisions:
I guess once you’ve been asked these questions then they stay with you and for me I’ve, you know, gone back to them in my head and kind of thought them through. (1).
In addition, parents were reassured decisions recorded in an advance care plan could be changed, although some found this was not completed in practice:
they kind of do them but it’s not revisited…there needs to be a protocol because with each individual illness we decide on the best course of action at the time (9)
Parents made decisions which accounted for the unpredictability of how their child would respond during periods of crisis, by keeping their options open. For example, rather than applying a ‘do not resuscitate’ as an umbrella decision which guided treatment decisions for all circumstances faced by their child, they matched the most appropriate available intervention with each circumstance likely to be encountered. Interventions were selected which gave the best chance for their child to ‘bounce back’, as Finlay’s parents explained:
Our plan with Finlay, within his advance care plan, is that we would try everything for 24 hours and then we would review it. Cos past experience is that he is a child who can get very seriously ill but he does bounce back quite quickly, so we’ve said we would like to try everything possible, even if it was to have a trachy, we’d want to try it first before instantly dismissing it. (7)
Thus, parents’ decisions were informed by how their child responded in previous situations, their quality of life, the risk of pain and suffering, and intended place of death.
Nevertheless, parents feared clinicians would do what they thought was best, rather than act in accordance with the advance care plan, particularly in an emergency:
The [advance care] plan …is marvellous ‘cos the plan’s basically telling them, don’t do what you think, do what this says. Keep resuscitating even if you totally believe it’s irrelevant until you see his known professionals—just keep going because he’s come through huge periods of resuscitation before, and I believe he would again. (3)
Therefore, it was vitally important for parents that those caring for their child had access to the advance care plan. Key workers were pivotal to distribution and some parents carried copies and drew attention to the plan whenever speaking to a clinician.
In addition to being empowering, advance care plans were symbolically significant. Committing their decisions in writing made the situation ‘real’ (3) and represented the reality of being a parent to a child with an LLC. Advance care plans had therapeutic value and they sustained hope:
So there’s hope, there’s so much hope, it’ll be sudden his deterioration, but I would still be under the impression of constant hope. (3)
Parents pointed to the benefit of their thoughts being ‘out in the open’ (6):
So we talked about things we wouldn’t have talked about—getting us round to talking about things we SHOULD talk about. (8)
Moreover, the process of advance care planning fostered relationships with healthcare professionals:
a helpful way of getting to know the consultant …and that helped me feel that he knew us and Clara better. (1)
It also helped parents to understand ‘where our wishes came together and where they were slightly different’ (5) and whether any differences mattered, so they could live with decisions made, after their child had died. Moreover, it provided peace of mind and enabled parents to subsequently concentrate on building memories:
Now we can make plans and we can do things, and we can make the most of the time we’ve got (7)
Discussion
The theory, reconstructing meaning through the process of advance care planning, provides an understanding of parents' experience, from the realisation their child is deteriorating, managing the inherent conflicts and tensions, and gaining confidence and sense of control. It explains how the process of advance care planning provides a means for parents to express their parental voice, as well as their family values and beliefs and manage the complexity and uncertainty associated with parenting a child with LLC and LTC.
Many of the experiences described in the theory, mirror parents’ experience identified in previous research and summarised in a previous scoping review.1 For example, several authors have found parents value advance care planning and the opportunity to be involved,23 24 even though difficult7 and welcome support from trusting and compassionate relationships with clinicians.4 8 25 Similarly, when not involved, parents feel side-lined.4 The study also supports work which demonstrates parents make flexible decisions which ‘kept their options open’,4 which balanced their child’s quality of life with their suffering, and takes account of previous life-threatening episodes where their child bounced back.9 The study also supports work which demonstrates advance care planning increases parents’ confidence and provides peace of mind and a sense of control.26
In addition, the theory expands on previous work. Beecham et al4 found parents wanted to keep their options open, because they found it difficult to make decisions in ‘advance of situations they still regarded as hypothetical’ and which limited treatment options. In contrast, the current study found parents recognised treatment limitations would be appropriate and necessary at some future point but made purposeful decisions not to limit treatment until clear they offered no benefit. Moreover, parents’ decisions were typically expressed in the form of an ‘if-then’ plan, in which anticipated consequences of deterioration (if this happens) were matched with an intervention (then try this first). Thus, parents made advance care planning decisions which specified how their choices should be implemented. Parents also used these steps to minimise conflict with clinicians and avoid the potential their child would not be given interventions which might be beneficial.
Uniquely, the theory describes parents’ experience of advance care planning as a dynamic and cyclical process, shaped by the unpredictability of their child’s illness and repeated cycles of crisis and stability. Each cycle contributed to a growing realisation their child was deteriorating and developed their knowledge and understanding of their child’s illness, which informed their decisions. This depiction of parents’ experience, directly contrasts with most clinical debates which position advance care planning within a longitudinal model of illness, where initiation at diagnosis is considered best practice, and initiation late in illness considered ‘too late’1 27 and burdensome.8 However, instead of being considered burdensome, parents valued the relationships, knowledge and confidence accrued through each advance care planning conversation. Moreover, they were less concerned about when advance care planning was initiated so long as they were involved. Indeed, they stressed there was no ‘right’ time to consider their child’s death. Nevertheless, parents considered it important to know about the concept of advance care planning early in illness, so they could think about and initiate conversations with clinicians. Thus, advance care planning was a means to enact their parental role and participate in shared decision-making for their child. Moreover, while the process of decision-making within advance care planning was familiar to parents, the experience was significantly different to their previous decision-making experiences, distinguished by the grief and sorrow which accompanied realisation their child was deteriorating. Thus, for parents, advance care planning was symbolic of the reality their child would die in the near future, their changing role as parents, and the decisions they made for their child.
Thus, parents’ experience of advance care planning was one through which they reconstructed the meaning of parenting a child with an LLC or LTC, how they integrated family life and normalcy with prognostic uncertainty, orientated their beliefs and values with complex intervention options to ensure the best life and death for their child, and reconciled inherent paradoxes and contradictions. The study adds to our understanding of what parents endure through the process of advance care planning and the outcomes associated with advance care planning.
The theory provides an understanding of how advance care planning facilitates parents’ judgement of their decisions and their subsequent self-concept as a parent. Thus, for parents, advance care planning was a relational, contextual and ongoing experience influenced by family and society, which provoked deep personal questions about life’s meaning. Advance care planning conversations helped parents make sense of and express their beliefs and goals and enact their decisions. Thus, advance care planning offered a means of ensuring coherence with what is important to families and how they make decisions.1
Importantly, parents considered the process of and their experience of advance care planning, as a combination of advance care planning conversations and construction of a written advance care plan. As might be expected by the nature of these documents, initial analysis of the written advance care plan revealed medically focused decisions, with little evidence of the values and beliefs or decision-making process described by parents in their interviews. However, by combining analysis of the plans with the interview data, the grounded theory reveals the symbolic significance of written advance care plans, in expressing a parents’ understanding of their child’s illness. Thus, rather than being solely a medical document, advance care plans were an important means for parents to express their voice and family identity.
Thus, this study demonstrates that current depictions of advance care planning focused on definitive treatment decisions achieved by rational decision-making processes misrepresents parents’ experience. In contrast, for parents, advance care planning encompasses their hopes and fears, beliefs and values, and represents what is ‘right’ for their child and their ability to be a ‘good’ parent. Thus, advance care planning supports parents to find meaning in the life and death of their child and in the transition from palliative to end of life care.
Implications and application
Advance care planning conversations are not just dependent on sensitive communication skills or regular reviews, but understanding the triggers for engaging in conversation and the complexity of decisions and how parents manage the tensions and options for care involved in the process. Furthermore, recognising the profound emotional impact requires an appreciation that parents use advance care planning to navigate these complexities, not to resolve them. Clinicians can support the process of reconciling multiple tensions by asking parents what is important to them and their family, and how they wish to engage in decision-making for their child. Advance care planning conversations are an opportunity to support and coach parents and give them a voice in assessment, timing of review and distribution of the advance care plan.
Advance care planning should involve early and continuous conversations of assessment and review that will provide space and time for parents to adjust, and manage the uncertainties related to their child’s illness and to reorientate their values, hopes and goals as their child’s condition deteriorates. This will help parents to understand the cyclical process of reconstructing meaning through advance care planning that although emotive, can have a therapeutic benefit.
Key recommendations
To reframe the approach to advance care planning to one that fosters a series of conversations and embraces reconstructing meaning.
To openly acknowledge the complexities and contradictions of advance care planning for parents, that will enable them to readjust their values and goals as their child’s condition deteriorates.
Strengths and limitations
This is the first grounded theory study exploring parents’ experience of advance care planning and one of its major strengths was the use of a constructivist grounded theory approach providing significant insight of parents’ experience of advance care planning. The combination of20 constructive approach and Clarke’s15 supplementary method of situational analysis revealed complexities and contradictions that were not previously known and has provided a new understanding of the process of advance care planning.
The robust systematic application of methods and theoretical considerations of plausibility, direction, centrality and theoretical adequacy14 provided rigour and theoretical sensitivity to the research process. In addition, the grounded theory was measured against Charmaz14 criteria for evidence of rigour (credibility, originality, resonance and usefulness).
The analysis, combining interviews and the advance care planning documents also provided an understanding of the process of advance care planning that would not have been achieved if either had been explored in isolation. The findings have demonstrated that both the conversation and the document are important for advance care planning and this provides vital knowledge for practice.
However, there are notable limitations. Accessing parents through the CCN team proved a significant challenge, specifically where parents who met the study criteria were not invited as the community nurses felt it inappropriate to discuss advance care planning. Additional time with the CCN team to understand their concerns illuminated that parents were perceived as vulnerable (although not self-defined) and there was a tendency for nurses to influence parents not to take part. Constant encouragement that parents do want to be involved and managing the dynamics of relationships was needed to ensure successful recruitment. In addition, it was clear that not all parents who had a child with an LLC came forward to offer to participate in the study. It may be that those parents that participated were better able to hear and understand the decisions about their child and engage in advance care planning and wanted to talk. The reasons are unknown, but it is possible that we have not heard the full range of views of parents’ experience of advance care planning. Furthermore, we did not investigate socioeconomic and cultural influence on advance care planning and this requires further research.
Only four fathers participated in this study and there were only two joint interviews, it is unlikely this is a complete representation of fathers’ views and only an emergent understanding of how parents co-constructed meaning within the process of advance care planning. This underlines the need for a better understanding of the individual perspectives of mothers and fathers, as well as how they construct a joint narrative.
Lastly, the study has not revealed where parents struggled or were unable to make meaning and the impact of this at end of life and into bereavement. Only four bereaved parents were interviewed so understanding the impact of the advance care planning process and the outcome in bereavement is limited.
Conclusion
The grounded theory asserts that reconstructing meaning is central to the process of advance care planning and that parents use the process of reconstructing meaning through advance care planning to readjust, and reconstruct meaning for themselves, their family and a future without their child. It presents a new understanding of parents’ experience of advance care planning and establishes a process of realisation, reconciling multiple tensions and building confidence and asserting control. It encourages us to significantly reframe the approach to advance care planning conversations. This means careful attention to conversations in practice, recognising uncertainty and supporting parents to make the most difficult of decisions through continuous conversations. If managed effectively it can empower parents to make future decisions and enables them to reconstruct meaning that offers hope and resilience to face the future death of their child. To implement meaningful conversations becomes a measure of how parents are able to understand and manage conversations and to talk about their values and beliefs. As healthcare professionals we need to build confidence so we are able to work in this unique space with parents.
Data availability statement
Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information. Relevant data from the study are included in the article and presented in tables 2 and 3 with supporting quotes. Coding index and categorisation data are available from the first author.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and ethical approval was gained from the University of Southampton ethics committee (ERGO 12608) and the National Research Ethics Service (15/SC/1077: IRAS 167355). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
The study was undertaken as part of a PhD, University of Southampton. HEB would like to acknowledge and thank her academic supervisors, Sue Duke and Alison Richardson for their advice and expertise in all aspects of the study. We would also like to acknowledge the research sites who assisted in the study and to thank the parents who participated in the study and shared their experience.
Footnotes
Contributors HEB conceived and designed the paper and analysis, undertook the data collection, extracted the data and performed the analysis, wrote the paper and acts as guarantor. SD conceived and designed the paper, supported the analysis, wrote the paper. AR verified the data and analysis, wrote, reviewed and edited the paper.
Funding HEB was recipient of an End of Life Care Doctoral Research studentship from the University of Southampton. Alison Richardson receives funding from National Institute for Health and Care Research Applied Research Collaboration Wessex. For the purpose of open access, the author has applied a Creative Commons attribution license (CC BY) to any Author Accepted Manuscript version arising from this submission.
Disclaimer The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.