Fathers and mothers developing skills in managing children's long-term medical conditions: how do their qualitative accounts compare?

Abstract

Developing skills for home-based caregiving of long-term conditions is a challenging and uncertain process. Both parents often participate in caregiving, and the findings reported here may help professionals decide how best to support both parents in their home-based caregiving.

Framework analysis: a worked example of a study exploring young people’s experiences of depression

“…In NVivo, you can then link the summary to the relevant part of the transcript text, so clicking on the summary will retrieve the transcript text linked to that part of the summary, making it easy for the researcher to move between the summaries and the original transcript text (Swallow et al, 2011).…”

“…For example, Srivastava and Thomson (2009) recommend the use of a schematic diagram to guide interpretation of the data, while Swallow et al (2011) worked independently on subsets of the data and established patterns and connections which they sought to explain. These were then compared and discussed with the aim of reaching a consensus.…”

Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

“…Evidence suggests that care-giving such as providing medical and nursing interventions above usual parenting tasks is a significant feature of living with a child with a long-term condition for both fathers and mothers (Cashin, Small & Solberg, 2008;Smith, Cheater & Bekker, 2013a;Wennick & Hallström, 2007). In order to manage their child's condition, parents need to; gain knowledge of the condition and treatments (Bailing & McCubin 2001;Knafl, Deatrick, Knafl, Gallo, et al, 2013, Nuutila & Salanterä, 2006; learn how to identify and respond to illness symptoms in their child (Smith, Cheater, Bekker & Chatwin, 2013b;Wennick & Hallström, 2007); and develop effective relationships with health professionals (Dickinson, Smythe, & Spence, 2006;Swallow & Jacoby, 2001;Swallow, Lambert, Santacroce, Macfadyen, 2011;Swallow, Macfadyen, Santacroce & Lambert, 2012). Many mothers and fathers living with a child with a long-term condition develop considerable expertise in managing their child's condition and want to work in partnership with health professionals (Swallow, Lambert, Santacroce & Macfadyen, 2011;Swallow, Macfadyen, Santacroce & Lambert, 2012;Smith, Cheater, Bekker & Chatwin, 2013c).…”

“…In order to manage their child's condition, parents need to; gain knowledge of the condition and treatments (Bailing & McCubin 2001;Knafl, Deatrick, Knafl, Gallo, et al, 2013, Nuutila & Salanterä, 2006; learn how to identify and respond to illness symptoms in their child (Smith, Cheater, Bekker & Chatwin, 2013b;Wennick & Hallström, 2007); and develop effective relationships with health professionals (Dickinson, Smythe, & Spence, 2006;Swallow & Jacoby, 2001;Swallow, Lambert, Santacroce, Macfadyen, 2011;Swallow, Macfadyen, Santacroce & Lambert, 2012). Many mothers and fathers living with a child with a long-term condition develop considerable expertise in managing their child's condition and want to work in partnership with health professionals (Swallow, Lambert, Santacroce & Macfadyen, 2011;Swallow, Macfadyen, Santacroce & Lambert, 2012;Smith, Cheater, Bekker & Chatwin, 2013c). Consequently parents expect care to be negotiated (Dickinson et al 2006) and that they will be involved in care decisions (Fawcett, Baggaley, Wu, Whyte & Martinson, 2005).…”

Família e asma da criança: a percepção do conviver bem

“…Além disso, o contexto geral no que diz respeito à doença crônica, e a atual diretriz de integralidade na assistência ao paciente, apontam que a subjetividade da enfermidade jamais pode ser excluída na medição da carga global da doença, ou seja, o impacto que ela traz a vida das pessoas, famílias e sociedade, como identificado em estudo na região nordeste do Brasil (13) ; e reforçam o que a mais de uma década já era apontado por estudiosos de família no contexto pediátrico, ou seja, que diante da situação de doença crônica da criança é fundamental uma abordagem mais ampla, não limitada apenas aos seus aspectos clínicos (14) , mas envolvendo também suas repercussões psicológicas, sociais e de funcionamento familiar (15,16) , sendo importante conhecer como e quanto a família foi impactada em todos os seus aspectos pela doença crônica da criança (6,17,18,19) .…”