Children’s hospices are key players in the provision of palliative care services for families wit... more Children’s hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents’ experiences of place identity and place belongingness at a children’s hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children’s hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents’ views of the identity of the hospice change and how the hospice becomes a plac...
Chronic pain, like acute pain, is in the individual child’s head — that is to say, only he or she... more Chronic pain, like acute pain, is in the individual child’s head — that is to say, only he or she can experience that pain. This does not mean that the pain is not real: it is real to the child experiencing it even if it is difficult for those outside this individual experience to validate it. This study, undertaken with three children and their families, explores their experiences of living with chronic pain. It provides an insight into their perspective of the way in which pain impacts on their life. The stress experienced as a result of not being believed and of feeling different is explored. The effects of pain in terms of the feelings engendered and the restrictions imposed are considered and reflect that families are not passively giving in to the pain but are active in their attempts to deal with it. The difficulties experienced when interfacing with professionals are presented.
Many people experience estrangement from a family member, which is broadly understood to refer to... more Many people experience estrangement from a family member, which is broadly understood to refer to negative relationships that are characterised by little or no contact. However, little is known about how people cope with family estrangement. To address this gap, interviews were conducted with 46 participants who identified as being estranged from a parent/sibling and/or child and having sought therapeutic support for this experience. The participants were recruited from a UK‐based charity that supports individuals experiencing family estrangement. The participants had a range of experiences of therapeutic support, with most (N = 31, 67%) having paid for private therapy. The data were analysed using thematic analysis, and three themes were generated: (1) finding the missing qualities in estranged family relationships: warmth, validation and safety; (2) speaking the unspoken: addressing the causes and consequences of estrangement; and (3) learning relational skills: improving the rela...
BACKGROUND Ambulant children with cerebral palsy (CP) undertake physiotherapy to improve balance ... more BACKGROUND Ambulant children with cerebral palsy (CP) undertake physiotherapy to improve balance and walking. However, there are no relevant clinical guidelines to standardise usual physiotherapy care in the UK. A consensus process can be used to define usual physiotherapy care for children with cerebral palsy (CP). The resulting usual care checklist can support the development of clinical guidelines and be used to measure fidelity to usual care in the control groups of trials for children with CP. METHODS Twelve expert physiotherapists were recruited. In Phase 1, statements on usual care were developed using a survey and two nominal groups. Phase 2 included a literature review to support usual physiotherapy interventions. Phase 3 used a confirmatory survey, which also captured changes to provision during the COVID-19 pandemic. Consensus was calculated by deriving the mean of the deviations from the median score (MDM). High consensus was deemed to be where MDM<0.42. RESULTS Physiotherapists reached high consensus on five outcome measures (MDM range 0-0.375) and nine areas of assessment (MDM range 0-0.25). Physiotherapists reached moderate consensus on task specific training (MDM=0.75), delivered at weekly intensity for 4-6 weeks (MDM=0.43). There was high consensus (MDM=0) that children should participate in modified sport and fitness activities and that children with Gross Motor Function Classification System level III should be monitored on long-term pathways (MDM= 0.29). CONCLUSIONS Physiotherapists reached consensus on two usual care interventions and a checklist was developed to inform the control groups of future randomised controlled trials. Further consensus work is required to establish clinical guidelines to standardise usual physiotherapy care in the UK.
Pain lashes out - a personal story of pain the pains of living with an artificial limb talking ab... more Pain lashes out - a personal story of pain the pains of living with an artificial limb talking about pain effective pain management - is empathy relevant? cultural dimensions of pain researching pain - paradigms and revolutions psychotherapy, foetal memory and pain counselling and the management of chronic pain pain - a feminist issue? suffering, emotion and pain - towards a sociological understanding pain management - training and education issues organizing pain management developing best practice through comparison and sharing the prevention of chronic pain child assent, consent and refusal of painful procedures children and their experience of pain young people and acute pain pain in later life fibromyalgia and pain shoulder pain in hemiplegia constructive management of cardiac pain the pain of withdrawing from illicit heroine use.
Urinary incontinence (UI) affects half of patients hospitalised after stroke and is often poorly ... more Urinary incontinence (UI) affects half of patients hospitalised after stroke and is often poorly managed. Cochrane systematic reviews have shown some positive impact of conservative interventions (such as bladder training) in reducing UI, but their effectiveness has not been demonstrated with stroke patients. We conducted a cluster randomised controlled feasibility trial of a systematic voiding programme (SVP) for the management of UI after stroke. Stroke services were randomised to receive SVP (n = 4), SVP plus supported implementation (SVP+, n = 4), or usual care (UC, n = 4).Feasibility outcomes were participant recruitment and retention. The main effectiveness outcome was presence or absence of UI at six and 12 weeks post-stroke. Additional effectiveness outcomes included were the effect of the intervention on different types of UI, continence status at discharge, UI severity, functional ability, quality of life, and death. It was possible to recruit patients (413; 164 SVP, 125 S...
■ Little research exists in relation to the world of the preterm baby nursed in moderate- to high... more ■ Little research exists in relation to the world of the preterm baby nursed in moderate- to high-dependency neonatal units ■ A constructivist approach allowed study of the responses of preterm babies to painful stimuli in relation to other patterns of behaviour ■ Heuristic analysis demonstrated four pantomimes: repose, lability, distress and pain ■ Babies used active self-coping strategies to contain pain, distress and lability ■ Babies signalled the need for support with both characteristic hand positions and grosser movements ■ The need for supportive, skilled nursing care and close assessment of behavioural state is indicated
Children’s hospices are key players in the provision of palliative care services for families wit... more Children’s hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents’ experiences of place identity and place belongingness at a children’s hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children’s hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents’ views of the identity of the hospice change and how the hospice becomes a plac...
Chronic pain, like acute pain, is in the individual child’s head — that is to say, only he or she... more Chronic pain, like acute pain, is in the individual child’s head — that is to say, only he or she can experience that pain. This does not mean that the pain is not real: it is real to the child experiencing it even if it is difficult for those outside this individual experience to validate it. This study, undertaken with three children and their families, explores their experiences of living with chronic pain. It provides an insight into their perspective of the way in which pain impacts on their life. The stress experienced as a result of not being believed and of feeling different is explored. The effects of pain in terms of the feelings engendered and the restrictions imposed are considered and reflect that families are not passively giving in to the pain but are active in their attempts to deal with it. The difficulties experienced when interfacing with professionals are presented.
Many people experience estrangement from a family member, which is broadly understood to refer to... more Many people experience estrangement from a family member, which is broadly understood to refer to negative relationships that are characterised by little or no contact. However, little is known about how people cope with family estrangement. To address this gap, interviews were conducted with 46 participants who identified as being estranged from a parent/sibling and/or child and having sought therapeutic support for this experience. The participants were recruited from a UK‐based charity that supports individuals experiencing family estrangement. The participants had a range of experiences of therapeutic support, with most (N = 31, 67%) having paid for private therapy. The data were analysed using thematic analysis, and three themes were generated: (1) finding the missing qualities in estranged family relationships: warmth, validation and safety; (2) speaking the unspoken: addressing the causes and consequences of estrangement; and (3) learning relational skills: improving the rela...
BACKGROUND Ambulant children with cerebral palsy (CP) undertake physiotherapy to improve balance ... more BACKGROUND Ambulant children with cerebral palsy (CP) undertake physiotherapy to improve balance and walking. However, there are no relevant clinical guidelines to standardise usual physiotherapy care in the UK. A consensus process can be used to define usual physiotherapy care for children with cerebral palsy (CP). The resulting usual care checklist can support the development of clinical guidelines and be used to measure fidelity to usual care in the control groups of trials for children with CP. METHODS Twelve expert physiotherapists were recruited. In Phase 1, statements on usual care were developed using a survey and two nominal groups. Phase 2 included a literature review to support usual physiotherapy interventions. Phase 3 used a confirmatory survey, which also captured changes to provision during the COVID-19 pandemic. Consensus was calculated by deriving the mean of the deviations from the median score (MDM). High consensus was deemed to be where MDM<0.42. RESULTS Physiotherapists reached high consensus on five outcome measures (MDM range 0-0.375) and nine areas of assessment (MDM range 0-0.25). Physiotherapists reached moderate consensus on task specific training (MDM=0.75), delivered at weekly intensity for 4-6 weeks (MDM=0.43). There was high consensus (MDM=0) that children should participate in modified sport and fitness activities and that children with Gross Motor Function Classification System level III should be monitored on long-term pathways (MDM= 0.29). CONCLUSIONS Physiotherapists reached consensus on two usual care interventions and a checklist was developed to inform the control groups of future randomised controlled trials. Further consensus work is required to establish clinical guidelines to standardise usual physiotherapy care in the UK.
Pain lashes out - a personal story of pain the pains of living with an artificial limb talking ab... more Pain lashes out - a personal story of pain the pains of living with an artificial limb talking about pain effective pain management - is empathy relevant? cultural dimensions of pain researching pain - paradigms and revolutions psychotherapy, foetal memory and pain counselling and the management of chronic pain pain - a feminist issue? suffering, emotion and pain - towards a sociological understanding pain management - training and education issues organizing pain management developing best practice through comparison and sharing the prevention of chronic pain child assent, consent and refusal of painful procedures children and their experience of pain young people and acute pain pain in later life fibromyalgia and pain shoulder pain in hemiplegia constructive management of cardiac pain the pain of withdrawing from illicit heroine use.
Urinary incontinence (UI) affects half of patients hospitalised after stroke and is often poorly ... more Urinary incontinence (UI) affects half of patients hospitalised after stroke and is often poorly managed. Cochrane systematic reviews have shown some positive impact of conservative interventions (such as bladder training) in reducing UI, but their effectiveness has not been demonstrated with stroke patients. We conducted a cluster randomised controlled feasibility trial of a systematic voiding programme (SVP) for the management of UI after stroke. Stroke services were randomised to receive SVP (n = 4), SVP plus supported implementation (SVP+, n = 4), or usual care (UC, n = 4).Feasibility outcomes were participant recruitment and retention. The main effectiveness outcome was presence or absence of UI at six and 12 weeks post-stroke. Additional effectiveness outcomes included were the effect of the intervention on different types of UI, continence status at discharge, UI severity, functional ability, quality of life, and death. It was possible to recruit patients (413; 164 SVP, 125 S...
■ Little research exists in relation to the world of the preterm baby nursed in moderate- to high... more ■ Little research exists in relation to the world of the preterm baby nursed in moderate- to high-dependency neonatal units ■ A constructivist approach allowed study of the responses of preterm babies to painful stimuli in relation to other patterns of behaviour ■ Heuristic analysis demonstrated four pantomimes: repose, lability, distress and pain ■ Babies used active self-coping strategies to contain pain, distress and lability ■ Babies signalled the need for support with both characteristic hand positions and grosser movements ■ The need for supportive, skilled nursing care and close assessment of behavioural state is indicated
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