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Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

The Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries

BIZZEGO, Andrea
LIM, Mengyu
DIMITRIOU, Dagmara
ESPOSITO, Gianluca
2021

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Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability.

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Covid-19: Violence risk and loss of income among persons with disabilities

ADD International
October 2020

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This report presents findings from telephone interviews with 87 members from Disabled People’s Organisation (DPO) partners and 10 DPO/Self-Help Group (SHG) leaders from organisations with 1,998 members in 10 districts across 7 provinces of Cambodia, to ask about the impact of the COVID-19 pandemic on persons with disabilities.

 

Three patterns emerge from these interviews: there is a pattern of compounding vulnerability to violence; a pattern of significant livelihood loss that is felt differently by disability type and gender; and a link between livelihood loss and pronounced increase in economic and psychological violence against women and girls with disabilities.

 

Evidence from these interviews suggests that, during the COVID-19 pandemic, some women with disabilities are at increased risk of violence and suffering a dramatic loss in household earnings. Reported violence risk increase is mostly psychological and economic, higher among older respondents and most pronounced among those who already experienced medium to high risk of violence before COVID-19.

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation

GONA, Joseph K.
NEWTON, Charles
HARTLEY, Sally
BUNNING, Karen
July 2020

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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.

 

Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.

 

Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.

 

Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.

 

Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

 

 

African Journal of Disability, Vol 9, 2020

Practicing in a person-centred environment – self-help groups in psycho-social rehabilitation

LANDSTAND, Bodil J
HEDLUNDl, Marianne
KENDALL, Elizabeth
2020

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Aim: The increasing prevalence of chronic conditions and impairments in the population is putting new demands on health and rehabilitation services. Research on self-help groups suggest that participation in these groups might have a positive impact on people who are struggling with chronic illnesses or disabil- ities. In this study, we explore person-centred support in which participants in self-help groups are under- going rehabilitation to develop their knowledge, skills and confidence necessary to handle life’s challenges.

 

Method: The design is exploratory, analysing data from informant interviews and focus groups (a total of 32 participants) using a Grounded Theory inspired approach to analyse. The participants were rehabilita- tion clients aged between 20 and 60 years; eight were men and twenty-six were women.

 

Results: Three main categories emerged as being important self-help processes that were likely to pro- mote positive rehabilitation outcomes: (1) Learning and practicing safely, (2) A refuge from expectations, (3) Internal processes that accentuate the positives.

 

Conclusion: Peer support delivered through the structured self-help environment can facilitate the devel- opment of new self-awareness, promote acceptance and adjustment, facilitate the establishment of new skills and enable transfer of learning to new environments, including the workplace.

Disability progression among leprosy patients released from treatment: a survival analysis

dos Santos, Aleksandra Rosento
et al
May 2020

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Leprosy can be cured, but physical disability (PD) as a result of the infection can progress in the post-release from treatment phase. This study evaluated the likelihood of, and factors associated with, the progression of the PD grade post-release from treatment among leprosy patients treated in Cáceres-MT, Brazil in the period 2000 to 2017.

A retrospective cohort study and survival analysis were performed in the hyperendemic municipality of Cáceres in the state of Mato Grosso. The study population consisted of newly diagnosed leprosy patients released from treatment between January 1, 2000 and December 31, 2017.

 

Infect Dis Poverty 9, 53 (2020)

https://doi.org/10.1186/s40249-020-00669-4

Stop Coronavirus: Keep clean

MENCAP
April 2020

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Why we need to keep our hands and things we touch clean in order to stop the spread of the Coronavirus pandemic and how to go about it.

Coronavirus: Guidance to help you stay safe and well. Self isolating

MENCAP
April 2020

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These are two of several guides to help keep safe and well during the coronavirus outbreak. The guides are accessible for people with a learning disability to use and are easy read format. These guides are about self isolating - one for people who live on their own and the other for people who live with others.

Feeling controlled or being in control? Apps for self-management among older people with neurological disability

WINBERG, C
KYLBERG, M
PETTERSSON, C
HARNETT, T
HEDVALL, P-O
MATTSSON, T
LEXELL, E Månsson
2019

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Purpose: 

The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson’s disease and stroke reason regarding using apps to facilitate self-management in everyday life.

 

Material and methods: 

A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51–80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson’s disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns.

 

Results:

 The results formed two themes. The first theme “using apps to have control of my health” comprises two subthemes; “monitor and take responsibility for a healthy lifestyle” and “compensate to facilitate everyday life”. The second theme “using the app as a tool and means for communication” also comprised two subthemes; “dare to trust the app” and “feeling safe when sharing information with health care professionals”.

 

Conclusions:

 The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered.

Medication management for people with disabilities

SINGLECARE
September 2019

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This guide provides tips for people with disabilities and their caregivers to properly handle prescriptions and manage medications. Practical advice is given on:

  • How to read medication labels
  • Managing medications at home
  • Medication strategies for people with visual impairments
  • Medication management for people with a physical disability and/or mobility limitations
  • Medication management for people with intellectual disabilities
  • Tips for effective medication management as the caregiver of a person with a disability

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

Associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury

MASHOLA, Mokgadi K.
MOTHABENG, Diphale J.
2019

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Background: The development of secondary health conditions (SHCs) after spinal cord injury (SCI) is common and can affect an individual’s emotional well-being, and his or her health-related quality of life (QOL). Little is known about relationships between performing health-benefiting behaviours and the presence (or absence) of SHCs and QOL, particularly in South Africa.

 

Objectives: This research study was conducted in order to determine the associations between health behaviour, SHCs and QOL in people with SCI (PWSCI).

 

Method: This cross-sectional study included 36 PWSCI discharged from a private rehabilitation facility in Pretoria, South Africa. The PWSCI completed questionnaires pertaining to lifestyle, independence, presence of SHCs, social support and QOL. Data were analysed using descriptive and inferential statistics such as correlation tests and chi-square test of independence (x2) using the SPSS v25. Moderate, moderately high and high correlations are reported (Pearson r ≥ 0.4). Results were significant if p < 0.05.

 

Results: Participation in health-benefiting behaviour was associated with increased QOL (r = 0.457, p < 0.01) and increased social support from family and friends (r = 0.425, p < 0.01), which was associated with increased QOL (r = 0.671, p < 0.001). Not participating in specific neuromusculoskeletal health behaviours was found to be associated with the overall presence of SHCs (r = -0.426, p < 0.01).

 

Conclusions: Participating in health-benefiting behaviour can reduce the development of SHCs and subsequently increase QOL in PWSCI. Health professionals must focus on minimising the development of SHCs by providing specific education on good health-benefiting behaviour.

 

African Journal of Disability, Vol 8, 2019

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

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