Respondents included a predominantly older population who were married, lived in their own home with their spouse/partner and had been diagnosed with Parkinson’s for two years or longer. Consistent with international literature, there were more men than women in the sample . Interestingly, a large proportion of survey respondents in this study reported never having problems with close personal relationships or lacking support from family or close friends. Indeed, the profile of long-term survivors with Parkinson’s for over 20 years suggested that the majority lived at home with a family caregiver . Elsewhere, “social relationships” (with family, friends, and neighbours) were revealed as most significant for PwP . Karlstedt et al.  found that although PwP may deteriorate over time, high relationship quality can produce gratification, meaning, and support, enhance negative consequences, and improve QoL. This emphasises the importance of establishing a profile of available supports to guide and facilitate pathways for individualised person-centred care  that can support HRQoL of people with Parkinson’s. Hence, interventions such as social support, respite care, couple therapy, or counselling may help caregivers and individuals adapt and adjust to ever-changing care situations and find inward strength to cope .
In this study, presence, type, and disruptions caused by NMSs, often referred to as invisible symptoms, and manifested their influence on HRQoL. Results indicated the differing gendered impacts of NMSs on HRQoL, with symptoms relating to talking or moving about in sleep, dribbling of saliva, and sexuality were statistically significant for men and nausea/vomiting for women. Concurring reports have suggested that NMSs influence long-term HRQoL for PwP . Moreover, findings showed how they may influence HRQoL more than motor symptoms , and psychological wellbeing  thereby highlighting the impact of NMSs and their relationship to HRQoL.
Within this study, respondents living with Parkinson’s for longer timeframes, recorded a higher NMS burden, a finding supported by Sanchez-Martinez et al. . There was also greater than a two-fold increase in the NMS burden for those in the low HRQoL cohort compared with participants in the high HRQoL cohort. Results indicated that the odds of experiencing individual NMSs were more likely in participants with lower HRQoL. Indeed, NMS burden can negatively affect HRQoL . Furthermore, people with more severe NMSs have reported more unmet needs such as accessibility to health care professionals . Given that respondents were community-dwelling, this highlights the vital role of primary and community nurses in providing impeccable assessment and therapeutic care that alleviates the impact of NMSs on PwP .
As detailed in the results most survey respondents reported either no depression or mild depression; nonetheless, combined frequencies for moderate and severe depression symptomology were clinically significant. This supports earlier findings ,  signalling the prevalence of major depressive disorders in PwP. Principal component and regression analyses established depression score as a significant contributor to and determinant of HRQoL. Symptoms of depression have emerged as one of the most important determinants of poor HRQoL for PwP  .
Of interest within this study was the finding which revealed a statistically significant difference in HRQoL scores (high, average, low HRQoL cohorts) across GDS-15 depression symptomology categories. Respondents in the low HRQoL cohort recorded more severe depression symptomology. From a health-professional perspective, two simple questions are recommended to assist identification of depression symptomology in the previous month, ‘have you often been bothered by feeling down, depressed or hopeless’? and, ‘Have you often been bothered by having little interest or pleasure in doing things’?  Undoubtedly, being vigilant to depression symptomology, employing listening skills, along with ascertaining a comprehensive history are fundamental nursing skills. Furthermore, referral to practitioners competent to undertake more in-depth physical and mental health assessments using validated instruments (e.g., GDS-15 or the combined Hospital Anxiety and Depression Scale HADS) to indicate presence of psychological difficulties severity, family and social supports and individual preferences is advised , . This is particularly important given the negative impact of depression and anxiety on the lives of people with Parkinson’s .
In the wider literature, the direct influences of motor control and mobility as strong contributors to HRQoL are reported . More recently, it was reported that ‘locomotion dysfunction’ (gait and balance difficulties) scored highest in motor characteristics underscoring the importance of gait deficits to HRQoL . One common dysfunction, freezing of gait, is a complex motor fluctuation connected with advancing Parkinson’s . In this study, the influence of Parkinson’s on mobility went beyond mere estimates of walking distance; many participants indicated they would need someone to accompany them in public. Furthermore, almost a third of survey participants reported that they felt frightened (often or always) about falling over in public. Horning et al.  reported gait deterioration, falls, and functional decline as key symptoms challenging home safety. These cause noticeable restrictions in a range of activities, disability, and altered autonomy  and highlight the interwoven nature of mobility, fear and dependence. Falls are significantly related to reduced HRQoL , .
As motor fluctuations also have direct and indirect effects on HRQoL (directly affecting pain and fatigue, and indirectly mood and sleep), assessing and managing these effectively could improve overall QoL . Recommendations from this study include the need to supplement HRQoL research instruments such as the PDQ-39 by including additional instruments to capture the everyday impact of Parkinson’s such as freezing of gait (e.g. The Freezing of Gait Questionnaire FOGQ), and other influences such as falls incidence and fear of falling (FOF) e.g. Fall Efficacy Scale-International (FES-I).
Findings from this study also emphasised the everyday impact of Parkinson’s not just on motor fluctuations but on ambulation, where almost half (48.5%) of respondents reported difficulty walking ½ mile. Findings from the wider literature highlight that exercise may help motor and nonmotor symptoms and prevent secondary complications of immobility (cardiovascular, osteoporosis) . Additionally exercise can help optimise function and performance of life activities . Developing exercise and walking capacity, balance, muscle power, and compensatory methods to alleviate pain during ambulation, could also reduce the work of walking from a rehabilitation perspective . Through rehabilitation, growth in knowledge and skills can increase personal control, self-management, role participation, and satisfaction . This emphasises the importance of resource planning and long-term healthcare professional commitment to sustaining rehabilitative therapy initiatives for PwP that truly foster independence and augment QoL.
It was evident that physical effects of Parkinson’s made it difficult for some respondents to complete everyday activities like doing up buttons or laces, writing clearly and cutting up food. Participants diagnosed the longest (22 years or more) showed poorer HRQoL with mobility, activities of daily living, emotional wellbeing, social support, cognition, communication and overall HRQoL. Furthermore, there was a significant association between feeling helpless and poorer HRQoL scores. Self-care activities contribute most to and are strong predictors of HRQoL . From the wider literature, a decline in ADL performance over a period of 8 years  along with ability to engage in leisure activities, household work, walking, and getting around in public have been attributed to Parkinson’s .
Principal component analysis in this study (PDQ-39 scale) revealed one of the four components determining HRQoL was independence/dependence. Previously, perceived autonomy was reported to affect HRQoL . Being dependent on others causes feelings of insecurity and reduces confidence in self-image and identity . The idea that Parkinson’s impacts on meaningful activities was previously linked to losses associated with previous social identities evident such as gardener, cook, mother/father, or being able to wear heeled shoes . Without sufficient personal control, people also find adaptation problematic . Subsequently, they may experience increased effects of chronic illness and its treatment, resulting in even lower QoL. Findings from Gusdal et al.’s  delphi study described having a social life, feeling safe and being able to retain one’s control as requirements for healthy and independent living among older people generally. Social care is valued for allowing choice, control, and enabling people to maintain independence . Hence, more creative community supports, based on individual needs in line with an active ageing concept , are required that facilitate social and advocacy needs around independence to sustain and improve HRQoL rather than just a focus on physical care services. This is further supported by aspirations to support people to live independently in the community for as long as possible and to co-design population service requirements . Udo’s (2016)  analysis of active ageing also incorporates continued participation in life and health to enable individuals to enjoy a positive QoL, as they grow older. Hence, promotion of independence and participation must be primary considerations for health care policy development and service delivery to preserve HRQoL for PwP.
In this study, PCA revealed stigma was a significant component of HRQoL. Moreover, there was a positive correlation between GDS-15 scores and the stigma dimension score (PDQ-39, with higher scores, suggest lowered HRQoL). A Kruskal Wallis test also showed a statistically significant difference in the GDS-15 category, and the stigma dimension score, revealing that participants in the severe depression category recorded the highest median stigma score. Salazar et al.  reported that for men, younger age and higher depression scores and for women higher depression scores were significant predictors of stigma, suggesting that treatments for Parkinson’s should also target emotional responses to alleviate perceived stigma.
Difficulty participating in preferred leisure activities were reported by over a third of respondents in this study. Kennedy-Behr and Hatchett  identified engagement in meaningful occupation as supporting wellbeing, relationships, and identity. Participation in a wide range of activities is also a useful rehabilitation goal . Involvement in physical and social activities can help individuals recover previous routines, ease and shape transition to a new life or fill losses in building self-esteem and identity .
Survey findings indicated over a third of respondents had difficulty getting around in public, and/or needed someone to accompany them. Over half the respondents indicated a preference for staying at home rather than socialising. In addition, poorer HRQoL in the domain of social support was evidences by respondents with longstanding Parkinson’s. Social isolation independently influences the prospect of depression or anxiety, with loneliness being a cyclical risk factor for declining social life . All these situations ultimately reduce social roles, wellbeing, and QoL.
While the largely inevitable physical consequences of disease take hold, social withdrawal and isolation should not be viewed as inevitable nor intractable . From a health and social perspective, activities that engage PwP where they feel valued, and part of communities is essential for QoL. This is especially important for individuals diagnosed for longer periods where social isolation may creep in. This again emphasises the importance of addressing loneliness and social network size to improve mental health of older PwP . It is vital that barriers to participation are removed for older people generally and more opportunities emerge for continued involvement in cultural, economic, and social dimensions of life and communities according to needs, preferences, and capabilities . From a HRQoL perspective, healthcare professionals should be mindful of the positive influence of feeling part of a community of people be that a committee or group.
Most survey respondents with good to average HRQoL reported feeling happy most of the time, as did two-thirds of those with poorer HRQoL. Sperens et al.  also found a positive outlook was necessary for coping with Parkinson’s. Moreover, Hurt et al.  explored relationships between illness perceptions, optimism, and well‐being. Holding positive views of illness predicted better well‐being; being optimistic offered some protection from undesirable illness perceptions . Gardenhire et al.  observed ‘emotional optimism’ was expressed through hope, happiness, and gratitude. Consequently, interventions should focus on enhancing positive perceptions of Parkinson’s and general optimistic attitudes to maximize well‐being. This finding reiterates the importance of healthcare interventions that support adaptation to Parkinson’s incorporating psychological therapies into pathways of care.
Results explored reliability of and relationships among variables in the PDQ-39 scale relative to an Irish context using principal component analysis (PCA). Results from PCA indicated that for the population in this study, components measuring 1) Independence/dependence 2) Experiencing stigma when communicating with others, 3) Emotional wellbeing and 4) Experiences of Pain were central to explaining core aspects of participants’ HRQoL. This finding strengthens recognition of HRQoL determinants as more than just physical but encapsulating sense of self, emotional wellbeing, feelings of control and. social dimensions of interacting with other people. Statistical analysis in this study’s population also uniquely established a framework of regression that strengthens understanding around the impact of depression symptomology, number of NMSs experienced and the length of time one is diagnosed in predicting HRQoL for PwP.