Youth and parents' experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model

Lindsay, Sally; Fellin, Melissa; Cruickshank, Heather; McPherson, Amy C.; Maxwell, Joanne

doi:10.1016/j.dhjo.2016.05.009

Cited by 29 publications

(66 citation statements)

References 16 publications

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“…"through the concrete experiences of the bereaved families (34). In line with previous research (35) coding of all transcripts was completed to develop themes before comparisons between the two groups of interviews were undertaken.…”

Section: Discussionmentioning

confidence: 99%

Palliative care delivery in residential aged care: Bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

Frey

Barham

Balmer

et al. 2020

Preprint

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BackgroundThe supportive hospice aged residential Exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses' knowledge and skill to care for frail older people.MethodThe experiences of 16 bereaved families concerning the palliative care journey (both at the start and finish of a one-year implementation of SHARE) were explored using semi-structured interviews.ResultsFour themes were important to bereaved families’ experience: communication with staff, relationship with general practitioners, systems of care, and hospice involvement. A sub-theme indicating changes in these four components of care between the start and finish of SHARE was identified. A fifth theme highlighted challenges (staff shortages and turnover).ConclusionFindings indicated that SHARE benefited families (improved communication and support) through the end of life journey of their relatives, but challenges remained.

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Section: Discussionmentioning

confidence: 99%

Palliative care delivery in residential aged care: Bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

Frey

Barham

Balmer

et al. 2020

Preprint

View full text Add to dashboard Cite

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“…In other words, “What did bereaved families at the start of SHARE say about developed themes and what did bereaved families at the finish of SHARE have to say about the same themes?” through the concrete experiences of the bereaved families [ 37 ]. In line with previous research [ 38 ] coding of all transcripts was completed to develop themes before comparisons between the two groups of interviews were undertaken. Analyst triangulation [ 39 ] of the results was established through discussion with project co-authors who hold a variety of expertise (gerontology, palliative care, social psychology, ethnography).…”

Section: Methodsmentioning

confidence: 99%

Palliative care delivery in residential aged care: bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

et al. 2020

View full text Add to dashboard Cite

Background: The supportive hospice aged residential exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses' knowledge and skill to care for frail older people. Method: The experiences of 18 bereaved families concerning the palliative care journey (both at the start and finish of a one-year implementation of SHARE) were explored using semi-structured interviews. Results: Three themes were important to bereaved families' experience: communication with staff, systems of care, and hospice involvement. Sub-themes indicating changes in these three components of care between the start and finish of SHARE was identified. A fourth theme highlighted challenges (relationship with GP, staff shortages, and turnover) that continued across SHARE. Conclusion: Findings indicated that SHARE benefited families (improved communication and support) through the end of life journey of their relatives, but challenges remained.

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“…AYAs with SB who progressed to transition had generally been exposed to parenting styles that encouraged independence, whereas AYAs with SB who did not progress to transition had parents who lacked awareness of their medical transition needs (Berry et al, 2013). Regarding family support, family involvement was an important factor of successful transition process (Lindsay et al, 2016): "(She wasn't) so involved in the past. So, when they ask her questions about the past … she doesn't remember because she never needed to.…”

Section: Main Transition Outcomes Of the Programsmentioning

confidence: 99%

“…In 2003, the Centers for Disease Control and Prevention began to study the quality of life of AYAs with SB, as well as ways to prevent SB (Thibadeau et al, 2010). Research into their transition also began (Binks et al, 2007;Mukherjee, 2007;Tuffrey & Pearce, 2003) and since the 2010s, the development and evaluation of transition programs for AYAs with SB have become topics of growing interest (Betz et al, 2010(Betz et al, , 2015Lindsay et al, 2016;Sawin et al, 2015;Seeley & Lindeke, 2017). Nonetheless, clinical guidelines to promote the successful transition of AYAs with SB are limited, indicating a need for a systematic review of the literature to identify the components of successful interventions and their transition outcomes.…”

Section: Introductionmentioning

confidence: 99%

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

Choi

Bae

Jang

2020

Journal of Advanced Nursing

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Spina bifida (SB) is one of the most common congenital malformations. It is caused by a failed closure of one or more vertebrae during the early weeks of gestation and results in significant neurological impairment at or below the lesion site (Copp et al., 2015). SB is the most complex of the congenital disorders that infants are expected to survive (Phillips et al., 2017); approximately 85% of individuals with SB are expected to survive to adulthood owing to medical advances (Spina Bifida Association, 2018). However, despite the advances in medical care and treatment, patients with SB continue to experience a range of functional impairments in areas such as walking and voluntary bowel and bladder control (Şahiṅ et al., 2014).

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Youth and parents' experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model

Cited by 29 publications

References 16 publications

Palliative care delivery in residential aged care: Bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

Palliative care delivery in residential aged care: Bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

Palliative care delivery in residential aged care: bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

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