Core theme
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Sub-themes
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Example in literature
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The need to ventilate
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Who decides?
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Parents have ultimate decision despite incomplete information [14]
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Parents felt they should be in control of decision, the ultimate decision maker [18]
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Caregiver perceived decision about LTV was theirs to make, sometimes an urgent decision [5]
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Providers often have limited understanding of how to guide ethical decision-making [19]
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Emotional experience
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Emotionally distressing [15]
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Social isolation, lonely experience [14]
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Pressure to make a quick decision, leading to stress [19]
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Frustration at not being listened to [14]
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Some parents felt unheard and opinion undervalued [14]
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Weight of responsibility of decision-making [14]
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Intensity of parenting [14]
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Conflict between parents [15]
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Context of decision-making
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Decision to initiate usually taken during a prolonged hospital stay [15]
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Discussion of home ventilation initially in ICU [15]
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Factors affecting how families arrive at a diagnosis, sometimes a long journey [10]
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Unexpected diagnosis or difficult treatment choices [22]
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HCP View
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Doctors present LTV as logical next step [15]
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HCP said procedure ‘had’ to be done [18]
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No other option given [5]
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Trach was often the only option presented [20]
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Other options
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Not take LTV option, rarely offered, a choice in tough situations [16]
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LTV not always obligatory [16]
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Differing opinions
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Parent who did not pursue LTV option felt medical team viewed her as uncaring [16]
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Parents felt they were an annoyance when they had differing opinions [18]
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Reluctance to commit to LTV when uncertain about life-course trajectory, its impact and technology dependence [18]
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Navigating medical decision-making
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The healthcare team
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Parents guided by medical team (experts) [17]
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Physicians involving nurses was positive [5]
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Nurses and respiratory therapists play a major role, more comfortable and trusting [5]
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Good collaboration between medical team was valued [5]
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Need for a ‘go to’ person, to coordinate the different parts of medical system [19]
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Health system constraints impaired decision-making (shorten decision-making window) such as availability of key professionals/ medical equipment / therapies / rooms [18]
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Information
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Parents need to fully understand options available to make informed decision [19]
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Educate myself to be his primary care physician [17]
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Other sources
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LTV is an uncommon procedure, little relevant life experience to draw upon [15]
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Parents sought perspectives from outside core team [15]
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Parents valued non-professional/other sources as more influential [18]
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Parents use social media sources [15]
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Spirituality
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Faith in a higher power [16]
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Spirituality [5]
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Complementary and alternative therapies, non-conventional approaches [21]
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Religion: prayers, helps coping, generates feelings of hope [21]
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Emotional needs
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Take one day at a time, cross bridge (decision-making) when come to it [17]
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Adjust life expectations and financial expectations [14]
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Signal loss of hope, grief [15]
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Devastation at childs condition [3]
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Transform as a person in response to childs need [14]
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Why LTV?
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Parents chose trach to extend lives of child and care for them at home [20]
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Desire for ‘getting home’ drove decision-making [15]
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Perceptions of communications
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HCP Comms: Positive
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Sharing stories about children with similar conditions was helpful [5]
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Good communications were valued [5]
Valued qualities: honesty, allowed time, tactful, supportive [3] honest, patient, hopeful [5]
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Empathic communications with increased information from medical team [19]
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An early and ongoing relationship with doctor was valued [17] (continuity of care)
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HCP Comms: Negative
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Inconsistently discussed [15]
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Did not value qualities: insufficient information, not timely, lack of detail, pressure to make decision, changing staff, depersonalisation of child [16]
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Rush or pressure to make a decision was perceived as negative [5]
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Insensitive or unhelpful HCP, very hard especially when unexpected diagnosis or treatment choices are presented [22]
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Focus on clinical outcomes [18]
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Parent as advocate
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Being the childs voice [14]
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Patient preferences rarely sought [18]
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Parents advocate for child (when HCP are unfamiliar with their condition), child is unable to vocalise pain [19]
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Important to know everything about condition to enable making a well-informed decision [16]
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Concerned about uncertain health trajectories [18]
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Information
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Some parents preferred only positive information. Did not wish to hear negative information and only information directly related to their childs condition [16]
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Information provided by HCP could be overwhelming [5]
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Parents not willing to accept ‘bad news’ [5]
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Different reactions to discussions with HCP, some valued early and frequent information, others felt overwhelmed, information overload and tried to avoid [15]
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Long-term
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Too little information on long term experience and outcomes and mostly training for home nursing [15]
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Wished better informed of difficulties of home nursing [16]
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Clinicians did not counsel adequately about long-term negative consequences of trach [20]
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Authority
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Physicians regarded as professional class with social power and ignore maternal knowledge and experience [21]
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Relations between HCP and parents/patients should be conducted in a non-hierarchal manner [21]
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Reflections
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Parents pick up pieces healthcare system cannot provide [14]
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Decision for child impacts whole family [14]
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Most satisfied with their decision [15]
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Wished had access to other families experiences [15]
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Tracheostomy decision-making is an iterative process, occurring over time, an ongoing information exchange [5]
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Parents should ask doctors about benefits of trach and only pursue if absolutely needed [20]
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Decision should be based on individual child rather than diagnosis [19]
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Balance quality of life with longevity [19]
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Resources developed to aid decision-making process
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LTV booklet [16]
Family reflections website [15]
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