"Fighting the system": Families caring for ventilator-dependent children and adults with complex health care needs at home

Abstract

BackgroundAn increasing number of individuals with complex health care needs now receive life-long and life-prolonging ventilatory support at home. Family members often take on the role of primary caregivers. The aim of this study was to explore the experiences of families giving advanced care to family members dependent on home mechanical ventilation.MethodsUsing qualitative research methods, a Grounded Theory influenced approach was used to explore the families' experiences. A total of 15 family members with 11 ventilator-dependent individuals (three children and eight adults) were recruited for 10 in-depth interviews.ResultsThe core category, "fighting the system," became the central theme as family members were asked to describe their experiences. In addition, we identified three subcategories, "lack of competence and continuity", "being indispensable" and "worth fighting for". This study revealed no major differences in the families' experiences that were dependent on whether the ventilator-dependent individual was a child or an adult.ConclusionsThese findings show that there is a large gap between family members' expectations and what the community health care services are able to provide, even when almost unlimited resources are available. A number of measures are needed to reduce the burden on these family members and to make hospital care at home possible. In the future, the gap between what the health care can potentially provide and what they can provide in real life will rapidly increase. New proposals to limit the extremely costly provision of home mechanical ventilation in Norway will trigger new ethical dilemmas that should be studied further.

Den familiære relasjonens betydning for pårørendes behov i møte med helsetjenesten

“…Mange pårørende opplever at kontakten med helsetjenesten er svaert vanskelig og representerer en ekstra belastning i hverdagen, saerlig i situasjoner der en naerstående har behov for langvarig og/eller sammensatt helsehjelp (Sommerseth & Hanssen, 2013;Weimand, 2012;Dybwik, Tollåli, Nielsen & Brinckmann, 2011). En rekke studier fra ulike fagfelt, viser at pårørende opplever manglende gjensidig informasjon, manglende involvering i beslutninger og manglende innflytelse (Dybwik et al, 2011;Jonasson, Liss, Westerlind & Berterö, 2010;Pirkis, Burgess, Hardy, Harris, Slade & Johnston, 2010;Montgomery & Koloski, 2009;Gray, Robinson, Seddon & Roberts, 2008;Berglund, 2007).…”

“…En rekke studier fra ulike fagfelt, viser at pårørende opplever manglende gjensidig informasjon, manglende involvering i beslutninger og manglende innflytelse (Dybwik et al, 2011;Jonasson, Liss, Westerlind & Berterö, 2010;Pirkis, Burgess, Hardy, Harris, Slade & Johnston, 2010;Montgomery & Koloski, 2009;Gray, Robinson, Seddon & Roberts, 2008;Berglund, 2007). Forskning om pårørendeinvolvering legger stor vekt på at samarbeidet mellom helsepersonell og pårørende bør vaere planlagt og strukturert (Bøckmann & Kjellevold, 2010;Jonasson et al, 2010).…”

“…Pirkis et al (2010) hevder at mangel på respekt fra andre kan vaere en kilde til utvikling av psykisk lidelse og psykologisk stress blant pårørende. Dersom belastningene blir for store, kan det vaere fare for at den pårørende selv utvikler helseproblemer og/eller at relasjonen til den en er pårørende til, blir konfliktfylt (Dybwik et al, 2011;Holst & Edberg, 2011;Weimand, Hedelin, Sällström & Hall-Lord, 2010;Koerner & Kenyon, 2007;Ulstein, 2007). Weimand (2012) fant at pårørende til personer med psykiske vansker har dårligere helse enn den norske befolkningen for øvrig.…”

“…Resultatene støtter opp under funn fra tidligere studier fra ulike fagfelt når det gjelder pårørendes opplevelse av mangel på informasjon, inkludering og samarbeid fra helsetjenestens side (Norheim & Sommerseth, 2014;Weimand, 2012;Dybwik et al, 2011;Pirkis et al 2010;Montgomery & Koloski, 2009;Gray et al, 2008;Koerner & Kenyon, 2007;Lewis, 2007), men studien bringer også inn nye dimensjoner. Dette er for det første knyttet til sammenhengen mellom pårørendes behov og den familiaere relasjonen til den en er pårørende til.…”

Rehabilitation Considerations for Children Dependent on Long-Term Mechanical Ventilation

“…Differences exist between family expectations and what professional care providers are able to provide [101]. Home nursing support, in particular night nursing, is important for the health and well-being of familial caregivers of children dependent on long-term MV [102].…”