Parent Perspectives in Shared Decision-Making for Children With Medical Complexity

Lin, Jody L.; Clark, Catherine L.; Halpern‐Felsher, Bonnie; Bennett, Paul N.; Assis-Hassid, Shiri; Amir, Ofra; Nunez, Yadira Castaneda; Cleary, N.; Gehrmann, Sebastian; Grosz, Barbara J.; Sanders, Lee

doi:10.1016/j.acap.2020.06.008

Cited by 29 publications

(11 citation statements)

References 34 publications

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“…However, physicians have to remind families that the decision to start treatment does not imply that they need to continue it if it is no longer in line with their goal of care 142 . Within this regard, it could be interesting to introduce a shared decision horizon that allows families to recalibrate their decisions and expectations 44 . Likewise, the healthcare team should reassure parents that the decision to forego treatment is not the equivalent of “doing nothing.” Raising awareness about palliative care as actively taking charge of the child, might make parents feeling less pressured to do “something.”…”

Section: Discussionmentioning

confidence: 99%

“…Why did none of the other families do so? Among the general Swiss population, the knowledge gap regarding palliative care is still great compared to other countries like the United Kingdom, 45 despite palliative care being an evidence-based standard of care in pediatric oncology. 46 Studies further show that despite highquality healthcare in Switzerland, important barriers to the timely implementation of pediatric palliative care (PPC) continue to persist and that late and non-referrals are still common in the pediatric oncology setting.…”

Section: Loss Of Independencementioning

confidence: 99%

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No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma

Clercq

Grotzer

Landolt

et al. 2022

Pediatric Blood & Cancer

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Background: Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child-and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. Procedure: The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis. Results: For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed. Conclusion: The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.

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Section: Discussionmentioning

confidence: 99%

Section: Loss Of Independencementioning

confidence: 99%

No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma

Clercq

Grotzer

Landolt

et al. 2022

Pediatric Blood & Cancer

View full text Add to dashboard Cite

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“…Given the challenges of medical care for CMC, their parents are faced with many difficult decisions. Unlike parents of healthy children who seek occasional care for a broken bone or an acute respiratory illness, parents of CMCs often face a continuous number of interconnected decisions, often without the support of medical evidence due to the complexity and co-existence of multiple chronic conditions [6,7]. To support these complex decisions, shared decision-making (SDM), a collaborative approach to reach decisional agreement, is a proposed means of improving health outcomes for children with chronic medical conditions [8,9].…”

Section: Introductionmentioning

confidence: 99%

Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis

Buchanan¹,

Lai²,

Cohen³

et al. 2022

J Particip Med

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Background Shared decision-making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the pediatric setting and children with medical complexity (CMC), specifically since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs. Objective The goal of our study was to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity among parents of CMCs and exploring what comprises their decision-making activity. Methods We interviewed 12 participants using semistructured interviews based on activity theory. Participants identified as either a parent of a CMC or a CMC over the age of 18 years. Qualitative framework analysis and an activity theory framework were employed to understand the complexity of the decision-making process in context. Results Parents of CMCs in our study made decisions based on a mental model of their child’s illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions. Conclusions Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving, and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child’s unique situation, the insights parents gain through their decision-making activity, and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values.

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“…Recently there has been a focus on shared decision-making practices among parents of children with medical complexity (Lin et al, 2017(Lin et al, , 2020, however studies focused specifically on mother-nurse decision making practices for this group of children receiving homecare services is scarce and therefore suggests further exploration.…”

Section: Introductionmentioning

confidence: 99%

“…Nevertheless, parents' and homecare nurses report conflict when negotiating care for children with complex health care needs (Carnevale et al, 2006, 2008; Coffman, 1997; Dybwik et al, 2011; Gravelle, 1997; Kirk, 1998, 2001; Kirk et al, 2005; Mah et al, 2008; Noyes et al, 1999; Ratliffe et al, 2002; Thorne et al, 1997; Wang & Barnard, 2004, 2008). Recently there has been a focus on shared decision‐making practices among parents of children with medical complexity (Lin et al, 2017, 2020), however studies focused specifically on mother–nurse decision making practices for this group of children receiving homecare services is scarce and therefore suggests further exploration.…”

Section: Introductionmentioning

confidence: 99%

Mother–nurse decision making practices for children with complex health care needs receiving homecare services: A qualitative descriptive study

LeGrow

Cohen

Espin

2022

Child

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Background Many children with complex health care needs face chronic health and developmental issues that may include functional impairments, neurodevelopmental disabilities, and lifelong dependence on medical technology. Providing the necessary care and services for this unique group of children and youth places substantial demands on the health care system. Much of the focus on improvements has been in acute care settings even though homecare accounts for the largest proportion of health care utilization among children with complex health care needs. While parents assume great responsibility for their child's care at home, they indicate that the balance of power between themselves and their health care providers does not change when care shifts from the hospital to home. Given the expanding role of paediatric homecare and parents' concerns of their role in decisions related to their child's care, it is imperative to explore these practices in this unique setting. Purpose The purpose of this work is to explore mother–nurse decision making practices for children with complex health care needs receiving health care services in their home. Methods A qualitative descriptive study design was used. Five mothers and five nurses participated. Twenty‐six home observations with accompanying analytical memos and 10 semistructured interviews were conducted with five mothers and five homecare nurses. Thematic analysis of study data, using an iterative process, identified major themes. Findings Data revealed the complex and relational nature of mother–nurse decision making practices within the home setting. Three major themes were identified: (1) core areas of decision making, (2) a dynamic and collaborative process, and (3) centrality of relationships. Conclusions Study findings enhanced our understanding of how decision making and relational care practices take place in the home for children with complex health care needs receiving homecare services, which has implications for child and family health.

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Parent Perspectives in Shared Decision-Making for Children With Medical Complexity

Cited by 29 publications

References 34 publications

No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma

No wrong decisions in an all‐wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma

Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis

Mother–nurse decision making practices for children with complex health care needs receiving homecare services: A qualitative descriptive study

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