Family Support Needs Following Acquired Brain Injury Across Metropolitan and Regional/Remote South Australia

2015 ◽  
Vol 16 (2) ◽  
pp. 131-144 ◽  
Author(s):  
Michelle Bellon ◽  
Ruth Crocker ◽  
Jennifer Farnden ◽  
Jaime Gardner ◽  
Sandi Sando ◽  
...  
Keyword(s):  
Brain Injury ◽  
Focus Groups ◽  
Family Support ◽  
Peer Support ◽  
Support Groups ◽  
Emotional Support ◽  
Family Members ◽  
South Australia ◽  
Acquired Brain Injury ◽  
Support Needs

Aims:To identify and compare, family support needs following an acquired brain injury (ABI) in metropolitan and regional/remote areas in order to inform the development of a state-wide family peer support network.Design:Mixed methods design including postal survey and focus groups.Results:The survey was completed by 194 family members who provide support to an adult with ABI. Focus groups included 43 participants (29 family members, 14 people with ABI). Thematic analysis of open-ended survey responses and focus group transcripts revealed 15 areas of needed support. Although all themes were identified by both geographic groups, regional/remote participants commented more frequently on the need for coordinated, accessible and tailored services. A strong focus was placed on the need for counselling and emotional support, as well as family support groups from both major city and regional/remote participants. Each support was reviewed to identify those which could be augmented through peer-supports, including: emotional support; family support groups; ABI information; family social activities; help to navigate the system; early supports (within the first year of ABI); and self-advocacy training.Conclusions:Results highlight a need for ongoing supports for the entire family following ABI in both metropolitan and regional/remote regions of SA (South Australia). Support themes can inform the development of family-centred services, including the role of peer-support networks.

The role of peer support groups in identity (re)construction after acquired brain injury

2019 ◽  
pp. 66-110
Author(s):  
Hana Malá Rytter ◽  
Camilla Jørgensen ◽  
Maria N. R. Thomassen ◽  
Chalotte Glintborg
Keyword(s):  
Brain Injury ◽  
Peer Support ◽  
Support Groups ◽  
Acquired Brain Injury

scholarly journals Peer support groups after acquired brain injury: a systematic review

Brain Injury ◽  
2020 ◽  
Vol 34 (7) ◽  
pp. 847-856
Author(s):  
Rachel Hughes ◽  
Pete Fleming ◽  
Lauren Henshall
Keyword(s):  
Systematic Review ◽  
Brain Injury ◽  
Peer Support ◽  
Support Groups ◽  
Acquired Brain Injury

Tensions in support for family caregivers of people with dementia in Singapore: A qualitative study

Dementia ◽  
2021 ◽  
pp. 147130122199056
Author(s):  
Iccha Basnyat ◽  
Leanne Chang
Keyword(s):  
Family Support ◽  
Family Caregivers ◽  
Emotional Support ◽  
Family Members ◽  
Primary Caregivers ◽  
Support Needs ◽  
Physical Support ◽  
Cultural Expectations ◽  
People With Dementia ◽  
The Family

Background Family members as informal caregivers are considered the first line of support for people with dementia across the world. In Singapore, caregiving expectations revolve around the cultural expectations of providing care in the home environment. However, studies in Singapore have identified a lack of family support for primary caregivers. Family support has been discussed in the literature as the provision of care for people with dementia, and rarely as a resource for family caregivers. Method To understand family support among primary caregivers in Singapore, 24 semi-structured interviews were conducted. Thematic analysis found four themes: excuses for lack of physical support for the caregiver, tensions between cultural expectations of caregiving and the provision of support, unmet emotional support, and lack of awareness of dementia and caregiving needs. Findings Caregivers rationalized and forgave the absence of physical support but were frustrated when the lack of support impacted people with dementia. This was seen as a lack of fulfilling cultural obligations of caring for elderly parents. The caregivers also felt frustrated with the lack of emotional support provided to them, but these were unspoken between the caregiver and the family members. Insufficient and unhelpful support giving was exacerbated with the perception of family members’ limited understanding of the demands of caregiving. Conclusion The findings offer four practical suggestions to address unmet support needs. First, public education is needed to enhance general knowledge about the symptoms and progression of dementia. Second, help is needed to address miscommunication about support within the family. Third, the development of guidebooks is needed to help family caregivers communicate with family members about their various support needs. Fourth, the relationship between cultural expectation and caregiving must be understood within the context of modernity and urbanism.

Information, connection and giving back: peer support outcomes for families following acquired brain injury in South Australia

2015 ◽  
Vol 25 (1) ◽  
pp. 204-214 ◽  
Author(s):  
Michelle Bellon ◽  
Sandi Sando ◽  
Ruth Crocker ◽  
Jennifer Farnden ◽  
Melissa Duras
Keyword(s):  
Brain Injury ◽  
Peer Support ◽  
South Australia ◽  
Acquired Brain Injury

scholarly journals A qualitative analysis of psychosocial needs and support impacts in families affected by young sudden cardiac death: The role of community and peer support

2020 ◽  
pp. 147451512092234 ◽  
Author(s):  
Edith Maria Steffen ◽  
Lada Timotijevic ◽  
Adrian Coyle
Keyword(s):  
Sudden Cardiac Death ◽  
Focus Groups ◽  
Peer Support ◽  
Thematic Analysis ◽  
Cardiac Death ◽  
Psychosocial Support ◽  
Family Members ◽  
Community Support ◽  
Sense Making ◽  
Support Needs

Background Young sudden cardiac death (YSCD), often occurring in previously healthy individuals, is a tragic event with devastating impact on affected families, who are at heightened risk of posttraumatic stress and prolonged grief and may themselves be at risk of YSCD. Previous research suggests that surviving family members’ psychosocial support needs are often unmet. Purpose This study sought to identify how YSCD-affected families experience dedicated community and peer support in light of their psychosocial support needs. Methods The study used a qualitative design, employing a thematic analysis of focus group and interview data. Three focus groups and five individual interviews were conducted with affected family members ( N = 19). The sample was drawn from a UK-based charity, Cardiac Risk in the Young. Audio-recordings of the focus groups and interviews were transcribed and subjected to thematic analysis. Results Three super-ordinate themes were identified: 1. YSCD community support as offering a place of safety, 2. YSCD community support as fostering sense-making, 3. YSCD community support as facilitating finding new meaning. Conclusions YSCD-affected families can benefit from access to dedicated community and peer support that offers a safe environment, provides affiliation, understanding and normalisation and enables sense-making and the rebuilding of a sense of self. Dedicated community support can facilitate meaningful re-engagement with life through helping prevent YSCD and through memorialisation and legacy-building to maintain a continuing bond with the deceased. Clinicians need to be aware of the need to incorporate available community and peer support into patient pathways.

“Family Support Would Have Been Like Amazing”

2016 ◽  
Vol 25 (1) ◽  
pp. 55-62 ◽  
Author(s):  
Stuart Roe
Keyword(s):  
Qualitative Study ◽  
Family Support ◽  
Peer Support ◽  
Coming Out ◽  
Family Members ◽  
Lgbtq Youth ◽  
Phenomenological Inquiry ◽  
Inquiry Approach ◽  
And Bisexual

This qualitative study examines gay and bisexual adolescent experiences with parental and family support using a phenomenological inquiry approach. Four themes related to peer support emerged from the data including (1) coming out was necessary; (2) initial reactions of parents are most often not positive; (3) lesbian, gay, bisexual, transgender, and questioning (LGBTQ) youth view religion as a barrier to support from parents; and (4) LGBTQ youth want explicit support from parents and family members. Implications for counselors working with parents, families, and individuals are discussed.

Assessing Care and Support Needs for Children With Acquired Brain Injury: Normative Data for the Paediatric Care and Needs Scale (PCANS)

2010 ◽  
Vol 11 (2) ◽  
pp. 183-196 ◽  
Author(s):  
Cheryl Soo ◽  
Robyn L. Tate ◽  
Vicki Anderson ◽  
Mary-Clare Waugh
Keyword(s):  
Brain Injury ◽  
Normative Data ◽  
Medical Condition ◽  
Acquired Brain Injury ◽  
Personal Hygiene ◽  
Support Needs ◽  
Typically Developing ◽  
Typically Developing Children ◽  
Essential Point ◽  
Paediatric Care

AbstractIntroduction:The Paediatric Care and Needs Scale (PCANS) was developed to address the dearth of scales currently available for measuring support needs of children with acquired brain injury (ABI). The scale assesses environmental supports (both supervision and physical assistance) across 14 domains of everyday activities from support for personal hygiene to participation in leisure and social activities. This study aimed to determine support needs in typically developing children using the PCANS in a normative sample of Australian children.Methods:Participants were parents of typically developing children aged 5–14 years (N= 300) recruited from a range of schools in metropolitan Melbourne. Children with ABI, diagnosis of a neurological or developmental disorder, or significant medical condition were excluded. Thirty parents of children in each of 10 age levels, with approximately equal sex ratio were recruited.Results:Findings suggest that support needs vary according to age of the child (p< .01) but not sex of child or occupational status of the parent. Additionally, children were found to have significantly higher support needs for supervision compared with physical assistance across most of the domains of the PCANS (p< .01). A greater number of age differences across PCANS domains were also found in younger children (5 to 7 and 8 to 11 years) compared to the older age group (age 12–14 years).Conclusions:This study reports normative data for the PCANS using a sample of children stratified by age. Findings will provide an essential point of reference to help guide clinical interpretation of the PCANS for assessing support needs of children with ABI.

scholarly journals Support for family members who are caregivers to relatives with acquired brain injury

2021 ◽  
Vol 8 (1) ◽  
pp. 76-85
Author(s):  
Janet Walker ◽  
Lourens Schlebusch ◽  
Bernhard Gaede
Keyword(s):  
Brain Injury ◽  
Suicidal Ideation ◽  
Family Caregivers ◽  
Qualitative Data ◽  
Family Members ◽  
Acquired Brain Injury ◽  
Well Being ◽  
Self Report ◽  
Cross Sectional ◽  
Significance Level

Objectives. Family members caring for a patient with acquired brain injury (ABI) are coping with inordinate levels of stress partially due to their lack of understanding of the neuropsychological effects of acquired brain injury in the patient. The objective of this research is to show that as the caregivers’ stress levels increase, there is an increase in suicidal ideation. This highlights the causal relationship between unhealthy stress and reduced psychological well-being in these caregivers. In addition, qualitative research evidence regarding the caregivers’ views of their main sources of stress are presented. Methods. The participants were a random sample of 80 family caregivers of patients with acquired brain injury, out of whom 72.5% (58) are primary caregivers and 27.5% (22) are secondary caregivers. A mixed methodology was utilized. It comprised cross-sectional descriptive and phenomenological approaches. Quantitative data were obtained from two standardized measures: The Stress Symptom Checklist (SSCL) and item 9 of the Beck Depression Inventory. The qualitative data were derived from self-report procedures that were part of a structured questionnaire administered individually during the interviews. Results. The Kruskal-Wallis test with a significance level of p = .05 was used to compare the stress and suicidal ideation scores, which revealed that increasing levels of stress led to increased suicidality. The analysis of the qualitative data revealed five themes which were identified as the triggers of the caregivers’ profound stress. Most caregivers felt that it was predominantly the patient’s neuropsychological deficits, such as emotions and/or moods, cognitive ability, behavior and personality, executive function, and social factors that caused them profound stress. Conclusions. Support and education are needed to help family caregivers understand the neuropsychological impact of acquired brain injury on the patient. Once caregivers have an improved understanding and receive better support from healthcare providers, they should experience less stress and be better prepared to provide the appropriate support to patients with acquired brain injury.

Family members’ needs and experiences of driving disruption over time following an acquired brain injury: an evolving issue

2016 ◽  
Vol 39 (14) ◽  
pp. 1398-1407
Author(s):  
Phyllis Liang ◽  
Louise Gustafsson ◽  
Jacki Liddle ◽  
Jennifer Fleming
Keyword(s):  
Brain Injury ◽  
Family Members ◽  
Acquired Brain Injury ◽  
Over Time
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